I have to say I'm really humbled to suddenly see this on the front page. Today was a particularly hard day; I won't go into details but taking care of a permanently disabled invalid involves a lot of ups and downs and some fairly messy manual labor to keep them comfortable and in good shape.
I love you all. Hug your kids if you have em.
EDIT:
The above blog post here was one of three things I wrote in the immediate aftermath of the tragedy to try to process my feelings and exorcise my dark thoughts. I have two more which you can find below:
<3 Thank you for writing so beautifully and sharing so openly. Can I ask if you've sought support or community in other parents who have gone through similar losses and are battling this newfound duty? I can't figure out whether that would help or hinder. Perhaps the latter if it is too morose or retraumatizing.
That you’re finding so much comfort and resilience in your faith is an inspiration, and may God bless you all as you care for each other moving forward.
I also had a bit of an annus horribilis last year, and ended up taking almost a year off of blogging out of a sense of embarrassment and shame. I wanted to thank you for having the courage to write this and share the work through which you have been processing everything. It really would have helped to see all of this writing about 10 months ago, so I am glad it is here for everyone else and for my own inevitable next time at "rock bottom."
I also wanted to encourage you to keep going with your creative work, because I know it can really help fathom the depths of your mind in a way that "logical" thought really can't. For me, it was playing the piano and writing some (bad) compositions. You write very well, and I hope it brings you some clarity and relief.
Thank you and my best wishes to you and your family.
I lost my 21 year old brother in law to leukemia a few years back. Even though I didn't experience the same severity of pain as my wife or in-laws, I was still there through all of it. I saw my parents-in-law taking care of their dying son, who only a few months ago was a promising ornithology student, and the fittest player on his soccer team. What you wrote resonates a lot with what they said, and what I saw them go through.
Thank you for including the reference to Daniel 3, it has been a source of strength for my in-laws too. My brother-in-law got a lot of his strength from Philippians 1:21 "For to me to live is Christ, and to die is gain."
The love and care that you provide to your son does not go unnoticed or unseen.
One thing I learned from my in-laws' tragedy, was that the grief never goes away, but you will grow stronger in dealing with it.
I will be hugging my own kids extra-hard when I get home from work this afternoon.
> One thing I learned from my in-laws' tragedy, was that the grief never goes away, but you will grow stronger in dealing with it.
Picture your life as a a big, clear ball. When the grief first happens, it's like a giant, dark ball suddenly fills up the entire ball. There's nothing else. Everything is pain. Everything is grief.
People think the dark ball is meant to shrink over time, but in my experience, that's not it at all. What happens instead is that, slowly but surely, the clear ball gets bigger.
Eventually, not every moment is grief. Not every moment is pain. It's still there. It's never smaller. It never actually even hurts less. But you grow around it.
Losing someone to death is like if a color suddenly disappeared from your whole world. Let's use yellow. You've encountered so much of your life with this yellow in it. The more closely things were associated with this person,the yellower they are--and the more wrong they look now that yellow is gone.
Over time, you get used to the way they look, but you never really forget how they looked back when they were yellow. They're not as beautiful now.
But then there are other things that you encounter that haven't ever been yellow, places that person never went or things they were never a part of. You can imagine how much more beautiful they would be if they did have yellow, but they don't look wrong to you without yellow. They just look how they look, and that's the way you expect them to be beautiful.
I don't know if these images are helpful to anyone else, but they've made a big difference to me on my own grief journey, and since today would have been my sister's birthday, I thought I'd share them.
Thank you for sharing these. My brother was murdered a year ago and today I’m trying to finish writing my victim impact statement to be read at the sentencing of his killer. I’ve been frozen in my processing for several days and your descriptions helped me place myself back in my body as I tend to disassociate when faced with the overwhelming grief of his loss.
I'm so sorry for your loss, and the added layers of pain around how it happened. The thought of trying to put that into words that have to be shared publicly hurts my heart for you.
There's nothing I can say that will make it better. Just know a stranger on the internet is taking a moment to cry with your pain.
I've been reading your comments in this thread and wanted to say thank you. I recently lost my parrot (not directly — I had rehomed her with a friend and there was an accident with my friend's parents) and so much grief and regret choked me for a few days. But the ball has grown around it. And I am grateful that I had her company for a few years. Thank you.
This is an amazing writeup. I have lived the past 10 years in a situation with many parallels to yours, and at the same time unimaginably different.
When you say "It's not hard" you hit on one of the things I've always found difficulty to tell people. It's not hard, because it's the only thing to do. That certainty means it's painful, tiring, and many other things; but not hard.
My experience is that it only becomes really hard when you contemplate alternatives, imagine things being different, or daydream of a different life.
> contemplate alternatives, imagine things being different, or daydream of a different life
I lost my mother over 23 years ago, and one of the the hardest things for the longest while was anytime I would travel somewhere amazing, whether a city or country or the top of a mountain, knowing I'm seeing something she never saw, but might have, and what a kick she'd get out of it. It's always been in the back of my mind.
Now the hardest thing is realizing she'll never know her granddaughter, and vice-versa. Not to mention how much my daughter looks like her. But that's also a beautiful reminder of the cyclical nature of life and all its seasons.
Same. My mom was so unbelievably excited about eventually having grandchildren, it was one of her biggest desires after she'd lost her job and stayed home to take care of my various illnesses. She passed 2 years and 2 days ago. She had a long and... there still aren't words to describe the absolute horror. But i stayed there because i was the only one who could work from home and who could stay positive in the face of the impossible.
By the time i realized i should've been having every conversation possible she could no longer speak well, it just went one day, i have a recording of her struggling but i don't think i could ever bring myself to listen.
One new thing that's cropped up is thinking how much she'd enjoy some new youtube video i saw, or how funny she'd think a new "advertising photoshop fails" subreddit would be. And yeah, the grandchildren. There's a strong possibly she will have never even met my future wife. She didn't see my brother get married. She won't see me get aPhD. She was 60 and was there for so many things but the cycle just keeps moving on.
Life simply takes things, we're the ones who think we deserve them. The fact that we're anything at all is the greatest gift and the greatest pain. But i believe Tolkien said, "What punishments of God are not gifts"
My hands have similarities to both my mother and father who both died recently. When I'm stroking my 5 year old's face as he falls asleep (and he takes bloody ages to fall asleep) I like to think I'm giving them a chance to touch the grandson that they knew all too briefly.
(Great job autocorrect - almost changed "stroking" to "striking" there!)
Isn't it hard to do though? I fear I may be a monster for thinking this, but is the pain of the son and yourself worth it?
Meaning, is all this being done for some hope that the miracle pulls through? What if you knew with absolute certainty there was no recover and no brain activity, only pain.
So this is hard if you have a choice, what is the right choice?
I think he has thought about this question and 1000's of other scenarios that we will never know.
I write "you" figuratively, interchangeably as "one" or "oneself". I don't expect a reply. I'm asking for others sake or just simply to put my own thoughts down.
In case it helps — I actually have no expectation and hope of a miracle. Having my hopes absolutely crushed is what gets me through the day. The fear and uncertainty of having something to lose was and is far worse (to me) than the grinding daily commitment to meet his needs.
Maybe a miracle will happen one day but I have no expectation of it. I expect him to stay in that bed for years until he dies.
I see, thank you for the clarification and sharing. I don't think I could do what you're doing. That is what I mean by choice.
I'm holding my 6 week baby boy right now as he sleeps. It is painful just to read your story, but also humanizing and helpful in a way.
As someone who is very risk averse I wonder if using certain philosophies can help hedge against this kind of pain. But then it might have it's own consequences. I've used this in the past with partners (visualizing them leaving) but I'm not sure it would work here.
Is it possible to love your son so much but not feel an equal amount of pain with loss.
For the last year my father has been in a similar state, after suffering a massive stroke. You articulated some of my feelings in a beautiful way, even though our circumstances are quite different. Thank you. I wish you peace and joy.
> 17 If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king.
18 But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up.
Thank you so much for sharing this. God bless you and your family.
Hey Lars. Thanks for sharing your story, so many of us are in a similar situations but dealing with it in isolation. After more than a decade of being a carer I can offer you the following:
Take care of yourself and your partner. Get some outside help if you can so you can take some breaks.
Find things that bring you joy, treat yourself.
Try and help your daughters process things and come away better people for the experience.
Treat your son with love and dignity.
Find some things in your life to be grateful for and dwell on them, it is impossible to feel sorrow and gratitude at the same time.
> Find some things in your life to be grateful for and dwell on them, it is impossible to feel sorrow and gratitude at the same time.
Any advice on how to do this one. Recently I have been Noticing how no matter how many Good things I do in a year once they’re over they don’t really bring positive feelings the same way that the bad things pop up and make them selves dwelled upon.
There is really no tricks to do this, anyone who says otherwise is lying. We are not designed to "feel happy" we are designed to reproduce successfully . Don't strive to be happy all the time.
I am sure even dalai lama has a nagging inner voice thats harshing his buzz all the time. All the stuff these folks preach is just entertainment.
Inner voice has been conditioned by evolution, food, famine, floods, climate, culture , your body, your parents and host of other fears and hopes. You cannot simply trick that voice into thinking happy thoughts.
That’s weirdly reductive. The point isn’t to feel persistently happy—happiness is fleeting— it's to not feel hopeless and inconsolably miserable. I’m chemically prone to depression— diagnoses and everything— and even at my most depressed I’ll still feel moments of happiness. It’s the pervasive lack of hope, vitality, and the ability to see what’s good in your life that’s dangerous. Feeling grateful might not be a silver bullet for being in this mental state, but trying to more objectively view your situation in context and recognizing the good parts is an important part of grounding yourself when your perspective is skewed by depression.
An addendum: not sure if you were speaking figuratively, but an inner voice constantly preoccupied with potential catastrophe (even at a small scale, like minor social embarrassment) is a pretty strong indicator of an anxiety problem, which is eminently treatable. Even for people that chafe at the prospect of medication and traditional talk therapy, CBT specialists can help you implement some practical mental tools in only a few visits without protracted emotional history explorations or anything resembling them. The technique has proven to get quick, meaningful results for everything from combat PTSD to ADHD to depression and beyond, and can be a fast path to achieving good mental hygiene. Anyone reading this who’s curious about their own anxiety level should find an online questionnaire by a reputable, specialized mental health organization (i.e. not buzzfeed, et al, a pharmaceutical company, or someone trying to sell you therapy) and be honest in your answers. You shouldn’t need to create a login or divulge any identifying information.
I hope this doesn't sound overly simplistic, but it has changed my life. I have struggled with anxiety and depression for most of my life. A couple of years ago, a therapist said, "Have you tried thinking of something else?" when I was explaining running through anxiety-inducing scenarios in my head.
So now when something that causes anxiety or dread starts to show up in my head, I immediately say "I don't want to think about that" and I say a little prayer. Sometimes, I keep repeating the prayer to keep my mind occupied on something besides dread.
I have joked that this is my "Bottle it up" approach to my mental health, which people usually assume is a self-deprecating joke, but there's actually a lot of truth in it. Being able to control when to mentally address these tough situations if a real skill, and is not simply ignoring the problem outright. I'm glad you shared this experience.
Yeah it felt like a revelation when someone said "you can control your thoughts" basically. I was like, "Really? Is it really that easy?" and it takes some practice but yes, you don't have to just let your brain run around thinking about whatever it wants. You can say "no". It really helps me to have a specific prayer I say instead so that my mind doesn't just jump to some other dreadful scenario.
The other most impactful thing I've done for my anxiety was uninstalling all news apps from my phone. I check the headlines one time in the morning to satiate my curiosity then I don't look at the news at all.
In theravada buddhism, this is called applying the faculty of wise attention. We have zero control over our thoughts, but we have control over the object of our attention (and it improves with practice).
When unpleasant thoughts arise, the (canonical Buddhist) strategy is to move your attention to something (anything!) else.
Using mantra (prayer) or force of will ("I close my attention to this thought") are both applications of the technique.
i try to focus on positive experiences. that can mean trying to think of a positive memory or daydream about something, but usually it is immersing myself in a game or watch a movie, or listen or a story or audio drama, or writing.
one thing about writing vs daydreaming. daydreaming tends to have a bad reputation: https://en.wikipedia.org/wiki/Daydream#Benefits_and_costs but to me, a daydream is just a story not written down. when i focus on daydreaming i am literally doing the same thing as when i am focusing on writing a story.
i also write down positive experiences so i can revisit them if i feel the need (although i never do that. it's enough for me to know that the memory is saved)
you could try listening to entertaining podcasts if you want something to distract you while doing other work.
another thing that i found when i miss someone, is that drawing them lets me feel closer to them. if you want to try that but worry about your drawing skills, i recommend taking a photo of that person, break it down into small rectangles and then reconstruct the photo one rectangle at the time. that ensures you get the proportions right even if you don't have any drawing skills and you won't get frustrated that your drawing looks wrong.
> it is impossible to feel sorrow and gratitude at the same time.
This is very much the opposite of my experience. Being grateful even for the losses that have brought the most sorrow, the two things at the very same time, has ripped me apart, but it's also been the only way through.
ETA: I say this not to contradict you or deny your experience. I say it in case other people are thinking their experience might need to include both, so they're encouraged to realize that, for some people, it's not impossible, but necessary.
> Being grateful even for the losses that have brought the most sorrow, the two things at the very same time, has ripped me apart, but it's also been the only way through.
Whether or not you express this sentiment as a Christian, this is a core tenet of the teachings. Despite being reminded of this by a close counselor in the beginning of my own tragedy, I have yet to fully come to terms with it. I know I need to, and I try, but I'm still bitter about it, and I know I'm still only faking it. In fact, I think I'm reading this story and your comment at precisely the time I need to in order to finally admit to myself that this is also my only way through. I gotta be honest: I never expected to hear the voice of God speaking through this forum. Thank you.
I do express it as a Christian, and I don't believe I could any other way. After losing my sister and my nephew six years ago (today would have been her 36th birthday, actually), I tried mightily to come up with any other way through, and it just didn't, couldn't, happen.
There's a line at the end of the book A Song for Nagasaki where he says, "For all that has been, thank you. To all that will be, yes."
I think the journey of my life of faith is one of coming to mean that.
Agreed, this was my reaction as well. One of the most tragic feelings I've ever experienced in the realization of how lucky you are once something is gone. This is one of the defining aspects of my experience with lost relationships and the death of friends and family.
I appreciate that your post is thoughtful and has good intentions, but can i suggest not telling people how they can or cannot feel, or what they should or shouldn’t do?
(hah. putting myself into this basket for a second and acknowledging this comment)
emotions are complex.
you can show compassion and empathy without instruction?
> it is impossible to feel sorrow and gratitude at the same time.
I would’ve said this too, until 12 months ago. I lost my dog suddenly. And then some weeks and months later I started to feel her presence running up alongside me when I would walk in our familiar places.
In those moments I felt elation in her presence and also utter despair in her loss all at once.
It was a strange experience but also clear as day.
Not many things I (or anyone else) can say about what your family is going through. I wish patience and courage.
Your short story "Four Magic Words" is great and I can see how it's affected by recent events. When I saw the Greek phrase "Η Aνθρώπινη Ζωή Εστίν Ιερά" / "Human life is sacred", and after having read your post about your son, I understood that you have some connection with Eastern Christianity.
Being Greek and Christian myself (but not hardcore or old fashioned) I sympathize with you on many topics and wish for the optimal outcome in your family strugles.
This. I'm in a much less tragic situation with an intellectually disabled kid. After all the struggles to diagnose, potentially treat, and finally accept his - our - fate, the whole ordeal ended abruptly with this very same sentence. I am at peace now taking care of my kid.
Thanks for sharing your story. I want to acknowledge you we feel your devastation. Accept my virtual hugs. I wish peace and harmony to you, your family, and your son.
Thanks a lot for that write-up. Sent a very heartfelt prayer for your son. Life is hard beyond measure sometimes. Will give my daughter an extra hug when she is done with kindergarten later today; that much is for sure.
Lars, I opened this comment box because I have been through some of what you are going through. I hoped to offer you some comfort. However, as I try to type this, I realize I cannot. Ambigous grief is a bitch. There are no platitudes I can offer. I am sorry you are going through this.
I'm not emotional man, but the post made me tear up. Thank you for writing this I found it insightful compassionate and educational. I wish you all the best.
Lars from what I've read you seem like a very strong and capable person. A lot of success, great relationships and a beautiful family. When you get to this point in life there frankly isn't much left to learn or to grow. You are the kind of soul destined to go even further. It's a brutal harsh beautiful reality. It will test and grow your faith to heights and depths that will astound. You have and will continue through this with whatever it takes. I lost my 15 year old daughter a year and a half ago. It's not the same as your circumstance but I'm sure you'll be ok. PM me if you want to talk.
I couldn't bear to finish reading your story, for which I apologize. Our son is physically and developmentally disabled and though not at all near the level of yours, he will probably require assistance for the rest of his life. I will think about your family and story often, and may God keep you all, especially your beautiful little boy.
Agree that this is very heavy. I appreciate OP's vulnerability. I've got little ones and I need to read this; I just can't right now. I'll be glad do donate to OP if that's what we're doing.
My son has a severe intellectual disability, he's non verbal, still wears diapers (age 12), and requires assistance in almost every aspect of his life. I still remember the day we received his diagnosis 9 years ago. The word "devastating" can only describe a small part of what we felt. Today, I consider him a gift from God. He made everything fall into perspective. His purity and unconditional love brings us tremendous joy, even though the physical and mental aspects of caring for him can be tiresome sometimes.
I know how it feels when calamity hits. It's ugly. But with, time it gets easier. Hang in there, and know that you're not alone.
What a beautiful young man <3 God bless him. Thank you. I know there are many parents out there going through the same circumstances. It's always heartwarming to see this kind of solidarity and support. It does help.
Thank you for your kind words, I agree that he was such a beautiful child.
I've been reflecting on all the good things about him this week, and one thing I realized today is that because he was so small, I would still pick him up and carry him around as a 10 to 12 year old sometimes. That's something other parents could only do with their children for a much shorter time, and I appreciate now that that was something special about our time together.
I have an adult child with severe mental illness. It makes life less-than-easy, but others have it worse (including her). She will probably live with us until we check out. One of the things that concerns me, is how to help her, after we are gone.
I have also had many close associations and friends lose children, relatives, and associates; often, to unnatural causes. It has to do with the demographic I hang with.
> I have also had many close associations and friends lose children, relatives, and associates; often, to unnatural causes. It has to do with the demographic I hang with.
Perhaps this is morbid curiosity getting the best of me, but your last sentence was a surprise. What demographic do you hang out with that has such a high rate of death due to unnatural causes?
I appreciate you finding a way to so eloquently put your thoughts into words. For the longest time, I always felt like a terrible person or somehow socially or emotionally broken for being unable to respond to others grief. It's not that I couldn't imagine it or somewhat feel how they were feeling, but simply the wish that there was sentence or string of words I could put together to make it all okay. I guess anyone who has ever loved someone has felt the same :(
I've been debating on responding here and well you can see my decision has been made. The caveat is that this response is also biased on my personal experience so your milage may vary.
But for anyone reading this who is adjacent to a close friend or relative or even a stranger that is experience traumatic loss the grieving process is a messy thing. No one experiences it the same way. Second-hand grief is similar.
So rather than "try to fix it" by saying anything, say nothing, and just be present. Just sit. That says more than words. And if you can't be there, notes of "You are on my mind" are good too.
My heart goes out to you. My youngest son is the same age, with a permanent disability which for now we've managed to avoid the worst consequences of thanks to risky but ultimately successful surgeries, but there's an ever-present fear of what his future will be or when will tragedy strike. I just have to live for today, take things one day at a time, and not project into the future. Of course your circumstances are on a whole other level of difficulty and grief, one which I don't think I could handle, and I admire your ability to cope with it to the point of being able to write about it. Sending much love to you and your family.
I hope and pray that the whole family and everyone his life has touched gets some closure. What you shared broke probably many of us but somewhat was one of the most strengthening things I've ever read.
And to anyone who feels like telling me what a bad person I am for drawing the line in a slightly different place than you do on Euthanasia — go read Four Magic Words before you post something glib assuming you know anything about my reasoning and motivations.
Go ahead and have a reasoned debate about euthanasia if you want — I’ve never subscribed to “the person who is suffering the most this second gets to be right about everything.”
Just know five things:
1) I respect you if you would make a different decision than I would.
2) I landed in about the most controversial edge case imaginable.
3) You don’t know me
4) It has not been sentimental, romantic, or spiritually invigorating. It’s been horrible.
5) I don’t do this because I can’t emotionally bear to be parted with what’s left of him. It’s the opposite if anything.
Hey man, I don't know you and you don't know me, but if I may I'd like to point out that you don't have to explain your feelings or thoughts to a bunch of strangers on the Internet. Just getting them out there, in this form, is a gift for anyone willing to receive it.
I don't disagree with you, but it actually seems like a great strategy to avoid internet arguments... My grandfather used to tell a story about how when he was a child he'd get beat up on the way home by the bullies on the corner (circa 1950).
He resolved it with a similar approach - run in headfirst, fists flying, clobber everybody before they knew what hit em, and bounce. Seems a good idea to quash the trolls before they even get started.
It seems you are following the ethical course, and this is commendable. As you may already know, in ethics we distinguish between ordinary and extraordinary (or disproportionate) care. But while we may licitly refuse disproportionate care, at least in many cases, we cannot intentionally cause the death of anyone (ourselves or another; the "self-ownership" thesis is likely responsible for the view that we can licitly do anything to ourselves as if we were some kind of property, but we are not objects, and what is morally good is objective and not fully accounted for by consent, or utility). We may not purposefully speed up anyone's death, but we can, in some cases, where proportionality is preserved, permit treatment or refuse treatment, knowing that an unintended side effect is the hastening of death (like, perhaps, alleviation of pain).
In any case, know that such circumstances as yours, if we respond to them rightly, perfect us in the virtue of charity, the highest and greatest of virtues.
I wish your son, you, and your family comfort and joy. Do not despair. Fear not. Pax vobiscum.
I find your comment very distasteful. It is written as if you know The One True Path, and anyone who strays from Your Path is unethical.
I find your comment particularly distasteful in light of the fact that you were replying to a comment by the writer in which he acknowledged that people might make different choices if placed in the same situation that he was in.
Finally, some of the things you wrote are obviously wrong. For example:
>We may not purposefully speed up anyone’s death
Nonsense. If someone is trying to kill me, I may be justified in killing them.
Thank you, for all 3 blog posts. My wife and I experienced a still birth after a tragic cord accident on Dec 24th, two weeks from our due date. Your words have helped me bring some clarity and comfort to my situation. Thank you.
I have nothing useful to offer you other than my heartfelt tears and my sorrow. Your writing moved me in a way I cannot explain. God bless you and your family.
I have had a stressful, difficult week. Work is volatile right now, and it's taken a toll on my mental health.
Your story took me entirely out of that state, and your words regarding joy and optimism... reframing unimaginable to unfathomable, in particular... have both lifted me and left me with a feeling of unquenchable desire to help.
Thank you for sharing your story, and for being so deeply authentic throughout.
Thank you for sharing this. I've been going though it for over a decade and I rarely talk about it. I'm almost ashamed of it for reasons that I don't think I can put into words right now.
But I feel so isolated sometimes. Physically because it's so hard for us to go out, and mentally because if I share the details with 'ordinary' people it just tends to alienate them. People want to hear about softball tournaments and class plays, not feeding tubes and adult sized diapers. It's important for me to remember that I'm not uniquely cursed in having to deal with this.
I have seen many people like you respond here, but I felt a need to talk to you. I have a different story. I have convinced 2 partners over my younger life to have abortions. I was young and stupid. I thought life would continue in the grandest way it seemed then, and got caught off guard and was terrified. I have since had 2 children, and the sorrow and devastation of my past choices now haunts me. The love I lost. Not getting to hold and care for them.
You might say "get over it and stop feeling bad - you have something good," and I know I do, but the past hangs over me like a never-ending storm. How can I ever forgive myself for what I did? The thought of them safe in their mother's wombs and being ripped out...I can hardly bear it. I carry this pain daily. I have since learned that having kids is the best thing that ever happened to me. It taught me how to love in a way I hadn't ever before. Having this knowledge makes the past even harder to accept. Who would those unborn have been today? What would they have taught me? How can I be a caring person to have done this?
I can't say I can relate to your situation, so please forgive any apparent glibness, but I would gladly sign up to go through what a lot of people here have done for their children with special needs just to have the chance to have known them. It may sound easy for me to say, but be glad you didn't make my choices. If someone else reads this who did, please know that there is also a part of me that realizes I thought things would be different, and I went on the information I had, which was bad. I'm not at all judging you. You did the best you could. Despite me sounding self condemning, I'm just very regretful that I didn't make a different choice.
All this to say: I hope you find a little more validation from my story that you are on a good path, and that you are not cursed, but rather have a gift. It's a gift I chose to throw away. It sounds like it's hard to manage at times but it's very much a gift. I know that sounds dismissive and cheesy, like everything everyone would say because it sounds good and doesn't acknowledge the real sacrifices you've had to make in comparison to friends who don't understand, but I want you to know that I truly mean it, and I understand, maybe unlike others who say it, what it really means, because I look at you and want so badly what you have, if it meant having all my children alive in my life. Your child taught you how to love - deeper and more alive than anything else possibly could have. It may seem like life/God used force to shape you like this, but I'm learning that's the only way it can work sometimes. You have to get to a point where you are willing to see it differently, and God will find a way to show you that. Maybe your child's presence forced you to make a choice to break through your own ego and be willing to love them. If so, it no doubt transformed you. Learning that is the greatest lesson life can teach. You are on a good path. It won't be evident for a time, but you absolutely are. I send you my best.
This is one of the most moving things I've ever read on this site. Thanks for sharing your experience about a topic like this, where any discussion turns to the politics of the topic rather than the emotional impact it can have on real humans. Be well my friend, I'm sorry that you're having a hard time forgiving yourself.
I have two disabled siblings, what I wish I could do is give my parents (who are both dead now) some appreciation of how I now appreciate as a parent how hard it must have been for them and what a splendid job they did for all four of their kids.
Chiming in to say that the Ballad of St. Halvor was one of the nicest poems I’ve read in a long while, and kind of inspirational. I think I really needed that.
Where did you get that haunting image describing Elder Sophrony of Essex's quote? I love it. I love the tunnel of light juxtaposed with the abyss. And, of course, the simple table with tea.
The quote was one of my wife’s favorites. The image is just from ChatGPT and I believe the current legal doctrine is AI generated images aren’t copyrightable.
Stay safe and stay healthy, your other kids still need you. Your Son will be alive forever on your heart and memories. Stronger than the death, just the love, I heard once.. stay strong!
Thank you for sharing, and for writing so clearly. I just finished Four Magic Words and enjoyed it very much, including the author's note. Just bought your book as well. I wish you joy even in these difficult circumstances.
Many years ago, being newly married, I worried about my vulnerability in case my wife died. So one night, while away from her on a business trip, I tried to imagine and fathom her potential death. I was able to do this— or I should say I BEGAN to be able to do it, when to my alarm I felt my mind beginning to detach from her.
I realized from this exercise that the price of love is grief. Grief cannot be minimized or habituated without sacrificing what makes living wonderful.
I have now been married 32 years and have a 30-year old son whom I am equally besotted with. I am fully aware that the death of either of them will vaporize me as I know me. It is a black wall. I can’t and I won’t fathom life without them.
Hi larsiusprime, thank you for sharing. Right back at you.
My brain has been turning your words over and over this morning, trying to make sense of them. Trying to understand how I feel about them. I still don't know how to feel about them, but I really connect with the humanity of your story.
Four Magic Words was brilliant, I'm sure that story will sit with me for years.
My generally bright 3-year-old son has a physical defect that will make life harder for him, and that is reparable by now-common-enough surgery, the sooner the better, but requires general anesthesia.
"Is this worth the risks of general anesthesia" has a different balance for me after reading your story. Intellectually, I know there's risk for any sort of anesthesia, but you've given me some harsh emotional reality.
My wife of 10 years died of something called ADEM. "Acute disseminated encephalomyelitis". I'll save you the search, it means something (often immune system) strips the Myelin off the nerves in the brain. No Myelin, no proper electrical conduction. In my wife's case it was described as "fulminant", which means "severe and sudden onset". No kidding. She went from standing and talking to bed-ridden and not knowing who I am in 4 days. 3 days after she was "solement", meaning she wouldn't wake up fully. This is commonly described as "being in a coma". About a month and a half later I stopped supporting treatment, just like you did. I, she, were "lucky" (heh) that she didn't survive much longer and died just 3 days after.
I remember the doctors explaining the MRI (took a long while to get a sympathetic neurologist that actually sat and explained to me what's going on), the hopelessness, the decision to pull support and accept whatever happens next. I remember telling the hospital staff "just make her comfortable", though I didn't believe she was still there. Her brain was too far gone.
That decision was the hardest I had to make in my life. "yeah yeah" people might say (not you though, Lars, you know). But no. It was the hardest. To give up on the person that made your life whole. To know there will never be a replacement. Hoping (sorry, not a religious person, I don't really pray. I did try to make lots of deals with god during that time though) that things will get better, then just easier, then finally just end quickly.
Brain diseases are horrible. They frighten me beyond anything else in the world. You see your person change, disappear. That made me not believe in after life, souls, etc. What existence can there be after if you see memories disappear all at once, basic abilities like talking, moving, eating. Maybe there is something, but it's not the person anymore. That was the brain, the memories, the learned behavior and experiences they had in their lives. And when it's gone, it's gone.
I know what descending to that dark valley is like. What walking through it is like. I hope you can come back up towards the light. Eventually. Maybe.
One bit of practical advice: Reach out to psychologists (talk therapy) and to psychotherapists (psychoactive medicine). It's not a shame, it's a strength. Your brain undergoes significant changes and things get out of balance. Talking, pills - they both help. Today's psychiatric medicines are much more advanced and targeted than even 10 years ago, not to mention Hollywood's depictions. "But I'm afraid it'll change me, it won't be me anymore!" - sure, but is being you that great? You can comment here and I can share my own prescribed cocktail to your blog email.
Be strong. The sun will come back up. It won't be as bright or as warm, but it won't be dark forever.
At 49 I became a new father. My son (perfectly healthy thus far) is now 2.5 years old.
When I became a parent (a thing that the docs said was "likely impossible" given the obstacles in my and my partner's bodies, and yet here we are with what will likely be my only child ever), a number of perceptions changed, and one of them is that I can never look at any story involving parents, children and tragedy the same again.
I found it supremely difficult to read your piece but I did it anyway. ..... aaaaand I just had to pause because my eyes welled up at the end of the last sentence.
So I'm going to say nothing, because as you said, saying anything is awkward, and you already know how I feel to an extent, because you were a new father too once and terrified of stories like this (much less living one), so in honor of you sharing this part of your life story, I will make sure to hug my son when he returns from daycare shortly, because at the end of the day, love is the only currency that matters.
Keep loving that kid, even given the current situation. I know you have no choice, but keep doing it anyway. Much love to you and yours.
This is timely. We just lost our unborn son unexpectedly. He had been diagnosed with some issues with the heart and other organs. We were gearing up for multiple surgeries, a high-care situation, and him potentially not lasting until teens.
We didn't get to make memories with him, or see who he would grow to become. This is a blessing and a curse. But I believe that you and I will both meet our sons again one day in a place where there is no sickness, sadness, or death.
Romans 8:16-17
[16] The Spirit himself bears witness with our spirit that we are children of God, [17] and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him.
Everyone suffers in this life. The choice is whether to suffer with him or without him.
Sorry for your loss. I myself have two sons and almost cried when I read your post.
I just wanted to respectfully disagree that losing a child was that commonplace until approximately yesterday. IMO it's such a common thing that even today millions of people around the world suffer from that [0]. It's equally horrible experience to lose a child to what you describe in your post or to lose a child due to something this: [1]. (One could argue that a child simply dying is slightly better than having them brain dead for the next X years. But... let's leave it aside for now.)
My humble suggestion would be that maybe it would help to focus on preventing other children die. But IDK, I'm not a psychologist.
Lars is an absolutely incredible thinker with a polymath-like range.
- He has done great professional work as a software developer
- He has pushed forward arguably one of the best economic policies for modern times(land value tax) through both a startup[1], and writing[2]. I particularly like his interview with Dwarkesh Patel[3]
- He contributes core thinking to rationalist communities. Just the other day I completely randomly encountered him as being submitter of the primary US Election 2024 market on the forecasting site manifold[1]
The two most impactful thinkers/writers in my life have now had to survive through incredible loss(Douglas Hofstadter - who lost his wife after writing GEB is the other). Wishing you all the best Lars.
> The two most impactful thinkers/writers in my life
I am not familiar with the author, but after reading this article I am interested in learning more him and his other thoughts. Can you provide a good starting place for reading material? Specifically something that you feel affected your life.
Land is a Big Deal is a great place to start (and his three articles summarising Georgism for SSC, also on his substack named after Henry George's book "Progress and Poverty", which contain much of the same content).
Way back in 2012, this affected a lot of my thinking around software piracy/selling software, and I think a lot of it has proven pretty insightful in the intervening decade:
The images are shot, but that may be all the attention his site is getting today.
Edit: Many others are already saying it, but thank you for sharing, Lars. No one should have go through this, and your thoughts were beautifully written. Makes me feel very grateful/humbled for so much that I take for granted.
Just in case your "not familiar with the author" meant not Lars but Douglas Hofstadter, I suppose the best place to start is the aforementioned "GEB": Gödel, Escher, Bach - an Eternal Golden Braid -- note how 'GEB' returns transposed as 'EGB in the title; that's kind of significant (IIRC, been decades since I read it). HTH!
The cruelest thing of all is that, technically speaking, his son is still alive. I’d imagine this to be far more torturous.
I have lost many close family members, but they all lost their biological lives. This just seems to be one of the worst experiences you could go through.
People are downvoting you, but yes, his situation is worse than death in a sense. In some ways it's a comfort to still have what's left of him with me, in other ways it's worse. I definitely have a DNR in place for myself. I have complicated feelings about... well, everything, which I did my best to exorcise in this piece I posted a few days ago:
Thank you for sharing. I've found it helps to talk about these things. When my own mother died, I didn't immediately feel sad. It was a range of emotions; I was really surprised at how much I laughed. Not that I found it funny, but something within me just seemed to break.
My father died just before Christmas - and it was similar, my wife thought I was coping a little too well. That said all I needed was for all the planned 'xmas' things to be completed and I was able to give myself the time I needed to cry and make peace with the situation. I still go for a walk most mornings and cry when I am totally by myself - not that I am ashamed of crying, but just that it feels more freeing and more open when I am standing alone on a beach.
Thanks for writing this piece, I enjoyed it. My sympathies for your family's loss.
I feel like the most controversial idea in the story is the one where a four-word deontological requirement's truest and deepest form turns out to be a kind of consequentialist utilitarianism!
When your loved one is a continuing biological entity but you will never again experience them as they were… to me it was like all the magic left the world and consciousness/humanity was revealed to be just an illusion.
And, as Lars has written, there are many multipliers in the individual cases. Unfathomable indeed.
I will make some personal comments to Lars privately, but let me say this, publicly:
I read between 10 and 100 articles or posts linked from HN every single day, and I have for years. As you can see for yourselves, I almost never comment. At this late stage in my life and career, it just seems fruitless to add my lone voice to the world of mostly-vapid, interconnected noise.
But Lar’s three poignant and vulnerable essays, as well as his comments on this post, seem to have brought out nearly universally the best people I’ve yet to see on HN or even on the larger net.
Wow. Most of you commenting are demonstrably fine people, and without calling out any in particular, I must decloak for this brief moment to say thank you for being such thoughtful, expressive, kind people.
I certainly hope some of your best comments resonate with and help Lars. However, even if not, your wisdom and humanity have helped me today — helped me process my own life and my still-too-raw tragedies.
Well done, HN “friends.” Keep up your “good works.” May we meet again, in real life or beyond.
> I almost never comment. At this late stage in my life and career, it just seems fruitless to add my lone voice to the world of mostly-vapid, interconnected noise.
Late stage implies you’re older, and thus have seen a lot. You might get comments from people you’d rather not hear from, but your writing itself reaches people like me, who want to learn from your perspective.
> Turns out, unfathomable tragic loss isn't very hard. It's easy, in fact. Easy in the same way that falling off a cliff is "easy"–gravity does all the work for you. It's not like climbing mount Everest, desperately putting one foot in front of the other. It's not like struggling to answer questions in a final exam. Tragic loss is just something that happens to you.
I think about this a lot. The reality of life is that we either don't live very long or we experience unimaginable tragedy. But we figure out how to keep living in the new normal, because what else can you do. I guess part of being human is being able to exist as though this isn't true, and also survive when it happens.
Having gone myself as a 5 year old sibling through something like this I wish to stress this:
Don’t let your other children become chronically mentally ill, send them to the psychotherapist and counselor and do that for years. You can’t imagine the amount of suffering they will have untreated. This is not something that you can just outlive and your children are dependent on you supporting them by giving them support from somebody who actually can support them. The scar of this trauma will run many many years, make them extremely vulnerable and can render them with a full blown disability.
You can prevent this. Don’t let other people who have no idea shame you for seeking help for this.
So weird that I started reading C. S. Lewis’ “a grief observed” yesterday and today this popped up on hn. Your comment and OP’s thread made me go from a lurker to registering an account.
I was 2.5 years old when my brother was born with complications, brain damage being one of them. Could breathe by himself, but fed through a tube and couldn’t move. 3 months later he died.
Not sure what the total impact from this event has been, but I am affected by this event even today, decades later. It’s weird how something can impact a little child that much, but the loss was/is real. Especially with kids that I played with that had siblings (at that time when I was back to zero). Not unfazed, but not mentally crippled either. My parents didn’t, unfortunately(?), take me to any counselors or so, it wasn’t even recommended by any in the medical support apparatus.
I am often reminded that “God gives and he takes” (especially Job’s book), that might be the most pragmatic approach I’ve come up with over the years. And I still miss him when the wound opens once in a while, but at least he didn’t have to suffer.
I haven’t finished the books yet, but C. S. Lewis has at least two on this topic: “a grief observed” and “the problem of pain”, the latter written before losing his wife to cancer.
I hope you and your family can come through this trying time with your hope and faith intact.
I know of Doucet not because of games, but because of his extensive work and amazing writing in favor of a land value tax. Seeing this article title last month was such a gut punch. The lessons in the article are so so valuable, however. I'm so thankful for Doucet sharing the gift of his writing on this topic, and hope that it was helpful for him to create it.
I lost my 3 1/2 year old daughter to sudden illness about 10 months ago. Be gentle to yourself and your family. There will be times where you aren’t actively feeling the grief, but they pull you into theirs or vice versa. There will be times where your love and grief for your lost child will make it easy to forget to cherish the loved ones in front of you.
As you figure out how to live life from here– may you find a path forward that is healthy, loving, and beneficial for you and those you care about.
My son has been born with brain damage due to chromosomal abnormalities. He is just 2 years old. He can't walk, talk, he is feed through tube and doesn't seem to be interested with surrounding very much. And, he is scheduled medical procedure to treat another congenital condition in couple weeks. I understand your pain and suffering. I understand how much you and your family have changed over this difficult period. We also got healthy 5 year old daughter. Devastation, strangeness, changes and hardship that is more hard that anything.
I am glad that this forum raises human suffering issues and topics beyond bits and bytes. Before my son was born I was so unaware of how much support society has built to help cope and threat complex medical issues. I had no idea we got: feeding therapists, swallow studies, sleep studies, endocrinologists and literally hundreds specialties in health industry.
> “Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”
Saw that quote I think on HN a while ago.
Grief sucks. It's different than our other emotions. You can do all the right things and have everything going for you after, but it's still always there and never goes away. Something you truly how to live with and not be afraid to face or run from. This tragedy is different because in a way is ongoing. I found the post extremely inspirational. Best of luck on the new journey. Seems like they'll figure it out.
I've recently become a father to a son as well, and it's so difficult to imagine the magnitude of loss. We've already poured so much love into him and received so much, the thought of losing him is beyond heartbreaking. Then multiply that by 7 years and...like you said, unfathomable.
Your approach to the situation is inspiring. I honestly don't know what we'd do in this situation, but I like to think we'd find a way to continue loving him even with the understanding he'll never come back.
On a much smaller scale, I have an orchid plant my wife gave me, and the bloom from the store quickly died out. I've kept watering it every week, for the past 3 years. It's bloomed once since, interestingly enough when my wife & I agreed to get married, but since then nothing. My wife has asked me a few times why I don't throw it away, but at this point it's a part of us, until it naturally expires.
My son passed May 10 2018; I was drunk from May 11 2018 until sometime in 2022 with struggles off and on. I’d love to chat about the insane level of grief I experienced and maybe help or just listen. Come find me if you’d like.
I've come to understand that parents who have lost a child often face significant challenges in maintaining their relationship. Could you offer advice for such parents, both for before and after experiencing this tragic event, on how they can stay united and prevent further losses in their lives? Additionally, are there circumstances where it might be healthier for them not to stay together?
Coming up on the 6th anniversary of his death; my wife and I are separated and going through a divorce. I’d like to say it is all my fault because I am still emotionally unavailable but it takes two.
As for advice I think as we all relationships, communication is key. I dropped the ball here because honestly the first year I only got out of bed to go to the liquor store.
Year two, I drained my retirement to live while staying 24/7 obliterated and not dealing with what can only be called a complete loss of one’s identity and self.
I don’t think it is healthy for us to stay together because she took the loss much easier than I at least from all outward appearance.
Years 3-5 was a very introspective and healing time where I went through periods of depression and hopelessness.
I’m now in the rediscovering who I am phase because I kind of lost that along the way.
So in conclusion, a combination of LSD and therapy(CBT) allowed me to start moving forward with life and slowly getting out of a never ending cycle of grief.
That probably doesn’t answer your question but I think every one who has to go through this kind of event is going to handle it differently.
I’ve found after years of trying to escape all that I’ve lost. Talking about it helps the most.
You can see the PTSD and anxiety still has me up at 4:16am, I still don’t sleep well. I’m still healing and I imagine I may never fully heal but I do have hope that one day I will be better and have grown immensely through the experience but even today I have survivors guilt for being at work instead of home.
I’m deeply sorry that this happened to you both and, for whatever it’s worth to you, I’ll pray for you and your son today.
I couldn’t and wouldn’t pretend to understand what you’re going through - I’m just a stranger on the Internet that hopes that with time your struggles ease and you’re able to find a way forward.
I was reading this article and only at the end did it click that the author is a close childhood friend of mine, but we have since fallen out of touch. Love you, Lars, BT.
It is me! I've been good. I've been following and playing your games for years, back to the Super Energy Apocalypse days. I'll try to find a way to reach out, but my username here follows me around the internet.
I lost my first son five years ago. For me it permanently damaged - or a least thus far - has damaged my ability to return to a state of "normal", leaving me feeling more acutely aware of the accumulated emotional wounds that life inflicts while simultaneously slipping a veil between living and me. It was fast. One morning he was there and that night he was not.
To have ones child trapped in a state between life and death is a darkness that I am not sure I could endure. It is good to see that his family is so loving of one another and, I suppose, that he has such strong faith because ... I just cannot ... that cycle of pain that is most acute for months and months after your child is gone would spring on you every morning as the panic sets in, every time you step in and out of their room, every time you feed them, preventing any form of healing whatsoever. For me it would in any case. I cannot express it properly. It is a tragedy and I think that he may well be in a state of shock that he will not even be able to recognize as such for a long time to come.
When I lost my son, I found comfort in two thoughts—
- A big life can be very short
- "Why NOT me?"
Grief is an illness that can only be cured by time. Your wounds heal over, but never completely fade. You gradually pack it away in a little box alongside a few physical things—small clothes, toys, photos—and try not to open it too often in case you let it all spill out, or the smells to fade. Every now and then, someone knocks the box without realising and your grief tumbles onto the floor. It can take days to fit it all back in.
My nephew was born by emergency c-section after my sister experienced sudden cardiac death at age 29, 8 months pregnant. They were able to restart his heart, but after six days, he had recovered no brain activity, and passed away in the loving arms of his dad.
In those six days, that little boy brought peace to every person who met him, in the worst situation any of us had ever been in, even though he never even took a breath under his own power or opened his eyes.
Every year, as the anniversaries of his birth and death come around, I spend those days trying to ask myself if I've made good use of my time like he did of his.
Death can have so many meanings when I read this. I worry I'll forget what they smelled like, what they sounded like. What songs they would've been singing. What what what. The 'veil of tears' is perfectly apt. It both blinds me from the blessing I personally have to be living yet I'm I'm unaware of how short sighted I am. That beyond this veil so much of what I love is beyond the awareness of my own being. I hope he and his family finds respite.
I’m really feeling sorry for both the author and his family. Can’t imagine what they must be going through.
When I was 10 my oldest sibling went through a coma and after coming out of it some time later she did some things that my parents were not happy about. My family was going through some things and me being the youngest was completely neglected. I was shoved in a room and my family being well off all the problems were tried to be solved by money. Then just as things were getting a little better for me between 11-12 I was molested a few times. I was too scared to talk to anyone. My parents were not bothered much. 19 years later today I have PTSD and I struggle with anxiety depression panic. In my entire life I had no one to talk to and no one loved me. I was unable to make any connections in life. I do therapy which helps a little. I fell in love with someone 12 years ago which was the only time I felt something in life but she never liked me and till this day I hope for a miracle. There was a time few years ago I was unable to leave my room without panic attacks as that was the only place I felt safe. Somehow I was able to work my way into a graduate degree in computer science from a top school and a job. However I still spent the last 3 days crying alone. I deal with it every single day every single hour of my life. Life gets better some days and worse some days.
Anyway my point is that your children and your spouse need you the most right now. This is a turning point for everyone in the family. Hold them close. Talk to them. They may show they are strong and handling it well but they need you more than you might think. Some things cannot be undone. Some things cannot be changed. But many are in control today and a lot will be decided about the future at this time. So please just hold them close and tell them you love them. I will pray for you and your family.
I don't mean to trivialize your situation, but I recently learned about nociception [1] and your condition reminded me of what sucks about it. Ie, the emotional trauma you now live with is almost more debilitating than the initial pain from the earlier events.
It is such a terrible part of our physiology. It intends to protect us from so much pain, but it just ends up taking so much by preventing us from experiencing again. Wishing you the strength to keep working through this complexity and finding peace.
That previous sentence describes my father who was abusive in many strange ways. Sexual molestation was not included, so I can’t relate there.
My best advice is to succeed in spite of the barriers God placed in front of you. Ultimately it is you and God who care about what is happening moment to moment. Good luck
I've found the use of psychedelics and higher level thinking a particularly effective tool at mitigating the effects of PTSD. It's hard to explain but in some ways it's like when dr. Strange first goes to Kamar-Taj.
Terrible situation but nice that you are aware and that you suggested for him to turn to family. Needed in similar situation so and I understand it has become quite common or at least people have been more aware recently regarding trauma and cptsd (and the nightmares).
Thank you for the suggestion. I am immediately adding the book to kindle and will start reading it today itself. I once read a suggestion about 4 years ago called 'The Body Keeps the Score' on a reddit thread. I was unable to finish that book because it was just too much for me given I could relate so much to it but adding that to the thread as that book was very important for me to understand many things for me.
Pattesserie, a bit random but try and do sauna regularly. Start with little. Can do wonders for emotional issue release; can be very intense at first, just be prepared.
A user recommended the use of psychedelics, I wouldn't.
But try investigating recent literature regarding to MDMA and assisted therapy (with a professional) to treat and manage PTSD. If you are able to find a professional who is up to it, it could be something to consider. Is not a magic pill, but it can catalyze great results provided it's deeply integrated in therapy.
This worked for me actually with CBT for some time now as quality of life was certainly better. But it had side effects like feeling emotionally numb and lack of sexual desire. Though I haven’t ever even kissed a girl at 31 I thought that would be relevant in the future for any relationship as I tried dating a bit year ago and I felt emotionally very distant and cold for whatever reason. It’s a common side effect of it I guess from what I hear.
I slowly weaned off of it in 2023 with my therapist suggestion as I was doing okay even without it but I may have to go back to it for some time if things get worse. Not sure I’ll talk to my therapist next month.
MDMA and EMDR have been two therapies for trauma processing. I will keep an eye for it and talk to my therapist to see if he can refer me to a clinic who can help me in a controlled environment. Safety is very important from what I know when you do either.
> But it had side effects like feeling emotionally numb and lack of sexual desire
Lot's of friends who are in Sertraline has this adverse effect.
> Though I haven’t ever even kissed a girl at 31
I don't know how successful you are at dating but even so I'll recommend you "The Book of Pook" and "Anti Dump's Machine". Are two funny books you can find online for free. Don't buy them because they are recollection of blog posts from sosuave. They helped me mature in that aspect and give some good advice.
> I will keep an eye for it and talk to my therapist to see if he can refer me to a clinic who can help me in a controlled environment.
Sounds great. Also be cautious, you shouldn't take MDMA while on a SSRI like Escitalopram.
> Thanks for your help.
You are welcome, no problem, it's glad to hear I helped in some way. :)
Generally theme is that women tend to have a good time with me. Some have wanted to take the natural next steps. But I tend not to if I don’t feel the same which is always the case and I end it as soon as it starts getting real because I am either afraid or there is some guilt associated with it. I’m not sure I will talk to my therapist about this. Interesting thing to explore in my next session. Thanks for enlightening.
Also didn’t know about mdma and ssri combination.
I have a good combination of CBT expert and a therapist who prescribes me medicine who share notes so it’s been working for me so far. I tend not to experiment things on my own without their referrals or suggestions. I’ve had bad experience with therapists before so I am very cautious about it.
My story overlaps a lot with yours, especially the parts about never being able to form secure attachments (though for slightly different reasons).
I was stuck for a very, very, very long time until I encountered Internal Family Systems therapy. It has been able to help me heal the wounds in ways CBT/DBT/talk therapy never could (and not for lack of trying).
Oh this is the worst thing that could happen to any parent, but the writing was beautiful and so moving. Thank you for sharing. I am feeling such a great sympathetic grief but also great awe at how palpable the love and care is in this writing.
I'm adding this comment as a note to anyone who's walking alongside people who are grieving, or even is in the middle of a grief experience yourself.
Ring theory [0], developed by Susan Silk, was one of the most helpful guidelines someone gave me early in my grief journey.
Picture the traumatic event or loss at the center of a set of concentric circles. At the very center are the people going through it directly. Each step outward represents one step removed from the event itself.
Everyone has permission to dump any pain or need or anything onto anyone in a larger ring than they're in, but under no circumstance should any such things be dumped into a smaller circle.
For example, when my sister and my died, her husband/his father was in the innermost circle. My mother was in a very slightly larger one. My brother and I were a circle out from that, followed by her closest friend, his parents, his brother, their other friends, etc.
It makes a really big difference not to have to try to deal with what other people need to dump when you're dealing with enough to be broken yourself.
And when in doubt? The most effective thing you can do in many circumstances is show up, stay, and not say a word. Your physical presence and willingness to sit silently in the overwhelming awkwardness speaks volumes. It tells the person you love that they aren't alone, even when being with them is really hard.
My first born (and only kid) just birthed with a genetic mutation, very random one that may at any point in his life manifest in various degree of danger for his life.
I don't know what tomorrow has for me but your story made me think about this deep fear of one day losing him.
And at the same time I know 100 years ago we wouldn't even have noticed it until too late, at least now we can monitor and try to prevent danger...
Courage to you and your wife. I can't fathom but I can feel sympathy to your situation.
I can relate to this situation. My father contracted COVID in December 2021. He was already suffering from dementia, having lost his ability to relate things and express himself. From what we observed, he was no longer the person we had known for many years. After contracting COVID, he became fully silent and bedridden for six months. His food was administered through pipes, and blood reports were regularly taken to monitor his health. In case of any infection, especially urinary, we had to take him to the hospital. Throughout this period, he was physically present but unresponsive.
I was unsure about what he was feeling—whether he experienced pain or had lost his ability to feel it. My mother was not ready to accept the reality, continuously supporting him during this challenging time. I cannot recollect those days clearly. He passed away six months later, but the thoughts of what he went through continue to trouble all of us. I still feel the pain. Reading this account has made me more thoughtful about his situation during those times.
This feels horrific, this initial event essentially is the end of his son as he knows him, and eventually he will actually die. My only vaguely similar experience of this kind of thing is my grandfather with Alzheimer's, but it felt like a natural end of life scenario (a horrible one). But with my kids, and I do believe in euthanasia, I wouldn't be able to do that either. I don't believe in god, but I'd always think there's a chance that maybe things will improve. Very tough situation.
I knew soneone once who lost his wife with two small children. He started a "cheerful family" blog about how they were a cheerful family. Maybe I completely got it wrong, but it was painful to see. It seemed like denial.
Yet saying that, I am currently dealing with end'ish of life things for my father at 94, so I understand pragmatic.
My comment may be taken as wrong, but I hope that those that choose to vote (up or down) have gone through close loss before they choose to say they understand (or not).
What I will try to say is that we are with you, and that your sorrow is shared.
We cannot understand your loss, but we are moved by it, and it will mark us to a lesser degree than it has marked you, but the permanence of the mark will be remembered.
Take from us our thanks for your remembrance, and any solace that we might offer, scant as it may be, in your time of trial.
I will remember "Nikolas," the whispered song of what might have been.
Thank you for writing this. They say that you don't know what you have until it's gone, but reading experiences like this reminds me how precious and fragile life is, so that I can more deeply appreciate the time I do have with my loved ones.
I am truly sorry for your loss. Pray that you continue to stay strong. I went through the same situation about a decade ago with a close friend of mine and it's truly the hardest of times.
> Fortunately, we have been able to qualify for public medical assistance in this regard and it looks like we are going to be financially okay for the time being
I know this is off topic but I want to call out how important public medical assistance is. Healthcare costs can truly wreck families and anyone who thinks that the government does not have a role providing healthcare assistance needs to think again.
I've had a similar situation with a child, and although I won't go into details it can take a few years for it to process fully, and you come out with a different life perspective.
I can't give a lot of good advice as I've had the full emotional spectrum, the world no longer seems real, and at points didn't deal with it well. But that's ok. It's part of adjusting.
Please take it easy, you aren't alone, and if it gets too dark, sleep, tiredness can make things seem a lot worse. Make sure you speak to people continue hobbies, and avoid dwelling on the thoughts.
A very close friend of mine's brother was bicyling back home after his first year of college and was struck by a drunk driver, he was left in a vegetative state for about 8 years before finally passing from urinary complications. The father, also a creative person, wrote "In the Line of Fire", if you ever saw that film with Clint Eastwood. They said it was the worst and best thing to ever happen to them; I still don't understand what it means.
As a parent who has lost a son - I feel this immensely. At least you can see his face. That’s more than I can say for mine. He’ll forever be 12 years old to me. What helped me was giving back. I’m sure the road ahead will be hard, but don’t give up.
Very sorry to hear. I lost my boy five years ago and it just isn't something that ever gets better in the true sense, but we all have to learn how to live with it somehow.
When you become a parent, it's like being reincarnated but your old body is still there. You have two bodies now. Eventually you grow strong enough to withstand the new flood of sensations and emotions, but the majority of your energies goes into the new body. You have so much more to protect, but ultimately you have less you can control. You are along for the ride.
An important post to remind us that most of our trials are of the lesser kind.
>The best metaphor I can give for the daily home hospice care of your own seven year old son is a monastic vocation
His son is seven. In hospice care. There are no words, because as the author says: it is unfathomable. He writes with such care and precision and grace. It's an amazing act of charity he does for us all.
How utterly soulcrushing. Reading this I realized at once that both I want to be loving unconditionally to my kids like you and also my parents would never do this for me.
You and your family sound like beautiful people, and I hope you can be kind to yourself no matter what happens.
When timing is more appropriate, I'm curious to hear more in-depth about how to cling relentlessly to joy.
> My son is alive, but all of his higher mental functions have been wiped out. He still sleeps and wakes, breathes under his own power, and responds to certain stimuli, but he makes no intentional movements. He moves reflexively, and occasionally smiles and even laughs, but he can't speak and it's not clear what degree of awareness he still has of his situation, if any.
I remember when my mom got to that state when she was dying from cancer. I looked at my wife and told her that, when I'm at that state, feed me pain killers to move things along. (I didn't do that with my mom because she expressly told me that she didn't want euthanasia.)
But, when someone is in that state, is speeding along the inevitable really euthanasia? My mom was find with painkillers, even if they shortened her life by a few hours. I understand that the living need more time. (I wish I had more time with my mom.)
Steven Colbert and Anderson Cooper once had a wonderful, deeply human conversation about grief and loss, which also touches briefly upon Colbert’s mom losing two sons and her husband in a plane crash:
> Turns out, unfathomable tragic loss isn't very hard. It's easy, in fact. Easy in the same way that falling off a cliff is "easy"–gravity does all the work for you. It's not like climbing mount Everest, desperately putting one foot in front of the other. It's not like struggling to answer questions in a final exam. Tragic loss is just something that happens to you.
Lars, that was very deeply insightful for me. Thank you for sharing this, it helped me understand my own grief in a new light.
I wish I could say something to help you in the way your words have helped me. I only wish you some measure of happiness, in what way or form it may come, and may your future days be of peace.
Thank you Lars for putting my mundane work issues into perspective and help me think about enjoying and appreciating what I have and stress (less) about what I don't, though that is the human condition. Stay strong.
My son was born with TEF/EA (TOF/OA in the UK) and needed a 4 hour surgery when he was 2 days old. The days before the surgery and the following month while he was incubated were agonising in ways I can’t even describe.
Even though my story isn’t nowhere near your situation, I can vaguely relate. To the pain you feel, but also to the strength you seem to have found, to look for the positives because, deep down, you know that being positive and embracing the situation is the best you can do for your son.
I’m sending all my love to you, your son and your family.
Writing such a beautiful article in the midst of such a tragic moment proves your talent. I almost feel like I'm committing a blasphemy because I'm immensely moved by your article. Huge respect.
I read the article and browsed a lot of comments. I did not expect to read such an article when I opened the site today.
The article and a lot of comments really touched me. I gained a completely new perspective. Reading about the feeling of loosing a child automatically sparks the imagination about my one feelings about such a tragedy. Only thinking about it is somehow horrible. It really puts every other daily concern about the children and every dispute one might have with them into perspective.
Thanks everyone for sharing your thoughts and stories. I am moved.
> I now have one and only one job, which is working on real estate mass appraisal valuation technology for the purposes of accurately and credibly measuring the value of land separately from buildings and improvements. This is the kind of straightforward, steady, stable, boring work that I need to support my family right now. It also conveniently lines up with my niche interests [Georgism and LVT].
Is there a link regarding this? I'd like to know more about this project.
Hi Lars, Maybe what was needed all along for valuation software was a game developer's touch.
My greatest satisfaction when it comes to writing software comes from making my users happy - especially those users who've felt neglected.
Gamers are a spoiled bunch. There are so many good games, and so much other great entertainment and music on top of it =).
The inability to travel is something VR will help alleviate. Not the same as actually being there, but still, it will get people that much closer to it.
“For in grief nothing “stays put.” One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?
But if a spiral, am I going up or down it?
How often — will it be for always? — how often will the vast emptiness astonish me like a complete novelty and make me say, “I never realized my loss till this moment”? The same leg is cut off time after time.”
― C.S. Lewis, A Grief Observed
brought tears to my eyes, thank you for giving out such valuable lessons by writing this article. i hope you and your family will have the best days ahead of you <3
I want to say all the usual clichéd things like I'm sorry for your loss but it feels like nothing even comes close to being helpful. I hope you find a way through.
We dealt with this when my in-laws were in car accident, and my mother-in-law ended up in a coma - one day she was semi-conscious and still talking and then she just slipped away after series of micro strokes.
We all relieved when she passed - we buried her husband a few days before and were in a state of limbo as we waited as there was no hope of recovery - they did the DNR.
The lingering is the part that struck me too. Went through similar with my mother and ALS. It was hard witnessing her slowly die over months, while also having her witness our reactions, fully aware.
It is strange and cruel to have to mourn the loss of someone when they are still present.
My mom died in October.
Just today, I managed to open up memories through searching her stuff. The thought of the day was that a single kid covers and, literally, can wipe out all the generations that precede. Then, I read this post and the second thought was that this happens because of the parent that lies between.
Back in college I had to read "Lament for a Son", written by a college professor that lost a son in a mountain climbing accident. The "Page left deliberately blank" hit me a bit hard, just empathizing with the emptiness.
Based on the title simply can’t read this with kids of my own that I fear for daily. I have it an upvote because I believe it’s well deserving of attention but I just… can’t… read it myself. Whatever the circumstances I am very sorry for what you have had to go through.
The psychology of it is interesting. Somehow this worst thing in the world is bearable, and my granddad is quite ill right now and while that’s not the same at all, it feels “easy” compared to some other struggles in my life, which are objectively less painful. And yet…
So I’m going to feel sad for a bit, give you my best wishes, and then try as hard as possible to forget I ever read this and to purge the idea that it could ever happen to me.
It’ll be hard enough if it does. No need to worry about it beforehand.
I was depressed today and this flashed right at the top! Sorry for your loss and I am sure no words can easy out your pain. You have your family with you so this phase will move on. Life is unfair for sure but we still got a chance to make it better!
I lost my son three years ago last month and this resonates with me in ways I cannot imagine. I never expected to find this in this place today but I am both glad and sad that I did. "Unfathomable" is so painfully accurate.
This was a great read. The human conditions and the trials and tribulations faced by each and every one of us are plentiful and can often be over-encumbering. Be kind to everyone :)
Thank you for sharing your story. I remember when I lost my father while very young and the lack of it being “hard”, while being a lot of other things. You verbalized that experience very well.
It is a shame that medical bills can force you to change your way of life in the USA. In Germany or similiar countries with universal healthcare your cost would have been alomost 0$/€.
Fortunately I haven’t been saddled with enormous bills yet. We somehow qualified for public assistance. Granted we have also spent a very large number of hours on the phone and had to jump through many other hoops, and this is far from over.
What's so infuriating is that you even had to "qualify", and that many (presumably) don't. It would be nice if the USA caught up and joined the world's civilised countries.
Never mind that now, sorry. My best wishes to you and yours.
That is devastating. Beyond words. As a parent had stop reading because I could imagine that happening to my son. Eventually I went back and continued.
I hope they eventually find some comfort and some peace…
I commend this person for his capacity to write under such duress and depression. I have experienced my own tragedies over the years and during such times I can only escape.
Immense suffering one experiences is not explainable and can not be understood by people who did not experience the same. What is left is to smile and say, “I am OK”
When I miss my brother, it’s not because I just felt bad all of a sudden. It’s because I had a great thought about him or a fond memory, and then immediately it’s a a gut punch.
Lars, thank you for sharing. And you must know that you'll be fully reunited with your son again one day. I am humbled by your family's grace and strength.
It's sad to hear that you won't be making the game, but it's completely understandable, one has to focus on family.
this doesn't mean your career has to be boring, the job is boring if we make it boring.
I would respectfully suggest, from my ignorant and disconected viewpoint, that I sincerely hope that you at least consider making indie games from time to time.
perhaps making games is therapeutic, I do not know this, but it's a hunch.
I sincerely hope none of my remarks are considered insensitive, please keep in mind we belong in different cultural backgrounds.
I'm truly sorry for this event, OP. As a father, I cannot fathom how this feels, but I have had a taste of it when my young brother-in-law was in a catastrophic car accident. I hesitate to share this story, because it may again bring hope, and I agree that hope is pain in these situations. I do not know the details of your situation and how confident the medical team is in their prognosis. If you are certain in their judgment, then please do not read the rest, because it is hopeful. I share it here, if not for you, then for others. Apologies again if this is overstepping. I will delete it if this is out of bounds.
----
My BIL was in a head-on collision with a semi (he was in a Honda Civic) on a snowy day when he was in his early 20s. He was on his way to go snowboarding.
My wife, his only sibling, got the news immediately and we both got on a 5 hr flight to the hospital where he was. My wife was heavily pregnant.
While he was initially conscious after the accident, soon an embolism formed and resulted in a blockage in his brain. As I understand it, the embolism actually should have ended up in his lungs and killed him, but due to an unknown hole in his heart, it ended up in his brain and instead caused a severe brain injury. He lost consciousness and slipped into a coma. His physical body was battered (many broken bones) and now he also had no brain function. Non-responsive.
While grieving the accident, and his loss, we met with several Drs. at the hospital and their prognosis was bleak. Even on the slim chance that he would survive, he would not ever walk, or talk, or do much of anything ever again. I also remember the dire moment when the brain MRI came back and it looked like one big cloud of fog. I had spent a career at that time in medical imaging and while I was on the engineering side, I knew this was a horrible sign and the doctors confirmed that. One doctor matter of factly and without mincing words told us we'd be best off pulling the plug soon, so that his organs could be used. We could not bring ourselves to make that decision at the time (I often wish I could remember that Doctor's name to update him on what has transpired since, but alas that whole period of time was a grief-filled haze).
He stayed in that coma for 5 months, slowly showing signs of responsiveness. Eye movement, for example. Eventually, he "woke" up, but could not speak, still not walking or even able to sit up. Over years of intense therapy and effort by him and his team (and my wife supporting all of the above), he slowly improved. All of us spent so much time talking to him, while getting little to no response back. Eventually, you could get to the point where you told a joke and he would muster a smile, maybe with his eyes at first, and then with his mouth. I still remember the day the hospital called and the nurse put him on the phone to my wife with shock to say that he had said a word and he said "I love you" to his sister. Mind you, it was very hard to understand him (and he still is a bit difficult to understand, to this day).
I don't want to write a novel about this (I could easily), but his progression continued, over years and years. Physical therapy, speech therapy, occupational therapy and more. Today, a decade later, he can walk, talk, play video games, go to the movies, he does activities like swimming and skiing with assistance from equipment and aides. He lives in an apartment that has care aides around when he needs them, but can do many things for himself. He has the mentality of roughly a 10 year old, in some ways, but he has memories of his life before the accident and maintains his old sense of humour and love for his family. He is still with us and big pieces of the "old" him are there. He is a wonderful uncle to our children, the oldest of which was weeks away from being born when his Uncle's life changed forever.
wow, that was very powerful, and i didnt make it very far before being completely overwhelmed with emotion. but i am very grateful for this insight into human nature that can only come from the extremes of human experience.
> And honestly, at this point crying feels good. Crying isn't really when I feel like I'm suffering the most
Although I have not experienced anything even remotely as horrible as what the author has, I can still relate to this. I've been exposed to enough frustration and injustice over long enough periods of time that I can't cry about anything anymore. Last time I cried, I must have run out of tears mid-way through because I actually started chuckling at my own misfortune. I guess maybe my problems are in fact trivial in the grand scheme of things.
There is pain, and there is real pain. This is real pain. When life hits you like this, it's important to just endure, rather than escape. Trying to escape the pain can lead to addictions and behaviors that bring more problems. Some people are hit with pain like this and live a whole life trying to escape it, but never do. Best thing is accept, grieve, and continue on. Regardless, you will not be the same person, this will change you. Sometimes life just sucks, and there is no way of saying it doesn't, only time and love can help. However, the sun comes up every morning, and there is a sunset every night.
This is for anyone out there suffering some acute trauma like losing a loved one, or a chronic trauma like abuse over many years. I have experienced both, and it took me over 15 years to realize what had happened and to recover. I originally chose escapism. I didn't realize it at the time, but that's what it was. I was always into something, eventually even substance abuse. Ironically, escapism is how I ended learning to code, which was an escape for me. However, I also ended up being around even worse things and witnessing more death, while living broke and stressed out. This dragged me into even more suffering to the point of wanting suicide every day, but I just couldn't do it. This was a combination of escapism, and being around people with the same negativity as me.
Fortunately in time, I found myself, and realized everything that had happened, and how life can just be like that. But also how beautiful and exciting life can be as well. This would not have happened had I not met certain people that showed me what it means to love, and to be mentally strong. Also, by reading and learning you can find inspiration and love from someone that you will never meet in real life. Regardless, we need support of strong and positive people around us. We are a social species after all. When dealing with death/loss, remember the good times, be thankful for the time we had, and leave it at that - easier said than done.
The sun will rise tomorrow, and you will too. Take care, friend.
Life and its trappings are very precious. I once got slammed on here by some woke assholes for saying most people nowadays live better than John D. Rockefeller.
It’s like Sam Harris says, there are so many people who on their best day would choose to be you on your worst.
A bit too pessimistic if one is also in the 'AI will change our future' camp. The possibility of a hospice robot is much greater than zero in the next 20 years.
Being a father of two (oldest 3,5 years old) this kind of thread works as a friendly reminder of thankfulness. It suddenly opens up that deep void as thinking of your own death or the edge of the universe might do. I will hug my family and appreciate life and current happiness, knowing it can all end anytime. Thanks for the reminder and love to you all .
When I lost my father almost exactly a year I go, I was reminded of a comment on reddit that helped me a lot. Here it is:
Alright, here goes. I'm old. What that means is that I've survived (so far) and a lot of people I've known and loved did not. I've lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can't imagine the pain it must be to lose a child. But here's my two cents.
I wish I could say you get used to people dying. I never did. I don't want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don't want it to "not matter". I don't want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can't see.
As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.
In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, there is life.
Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out.
Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks.
Sad and terrible! Reminds me of a story I read when I was young.
An Indian emperor invited a wise man to his court and asked him to write a wish that will last forever. He wrote:
1. The emperor dies
2. His son dies
3. His grandson dies
The emperor was furious and ordered him to be punished. The wise man asked if he can have an opportunity to explain and the emperor agreed.
The wise man explained that he wrote what he wishes as the natural order of life in the kingdom. He asked the emperor to consider how terrible the situation would be if any of the order in that is changed. The emperor realized the truth in this and thanked the wise man.
The Buddhists were right about something. Life is suffering. I gotta stop writing here before I get too nihilistic. The posted article and some of the stories here are tragic. I wish I had something better to say.
Well, the Buddhists are more optimistic than that! They have lots of techniques and ways of thinking to reduce suffering. I recommend reading up on their life philosophy, they’re far from nihilists.
The main doctrine of Buddhism is that eternal bliss is possible, how is that not optimistic? I'm a Jodo Shinshu Pure Land Buddhist and as far as I can tell all Buddhists believe in this, it's the third noble truth after all.
To me it seems more optimistic to think that our current life is somehow limited and flawed and that a mind and experience beyond it is possible (Buddhahood) than to think that it's not possible and we are stuck as limited suffering beings.
I always found it interesting how many western religions and their followers maintain their faith in a “good” God, even in the face of terrible personal tragedy. I’m happy that people do, since it seems to help them and anything that does that is great.
I’m personally more beholden to the Warhammer (yes, out of anything…) quote: “it was the moment I began to believe, God was real, and He hated us.”.
If you accept the Christian view of God, then that God knows what it is to lose a son. He knows firsthand what he's costing you when he allows it to happen to you.
You may question his wisdom if you want. You may question his reasons for allowing it. But at least he's taken his own medicine.
There is also the part where human suffering is our problem because someone ate an apple and it gave us free will and the responsibility of our own lives. Still doesn’t change the thousands of children who died in some war zone today, or the ones who died from starvation and so on.
If you really watch that sort of thing from the sidelines with the power to stop it, then you probably aren’t too benevolent. Then again, the last time the Christian God wanted to solve “our” moral issues He drowned everyone but Noah.
Anyway, I’m happy people find comfort in their faith. I even sort of wish I could, but I just can’t get past the watching of all the evil and doing nothing to stop it. You wouldn’t let your toddlers set fire to each other either, well, I hope you wouldn’t.
Again, within the Christian view: We've walked away from God, rebelled against him, and broken everything in the process, but it's his fault that he doesn't fix everything?
God doesn't stop evil, but he does limit it, and will eventually end it completely. Why doesn't he do so immediately, when he could?
The bible's answer is that God is giving people time to repent. See, we are part of the evil that needs fixed. It's not just diseases. It's not even just other people. It's us. But we want God to address all the evil in the world that harms us (and those we care about), but not address the evil inside us (that also harms those around us).
So think carefully before you blame God for not addressing evil immediately with big, sweeping measures. He's still in the "rescue" phase; the court cases will come.
> The bible's answer is that God is giving people time to repent. See, we are part of the evil that needs fixed.
The evil that he, according to that same bronze-age goat-herders' tale, made. Any reasonable reading of the whole story says -- nay, loudly screams -- that he's the ultimate asshole.
The one redeeming character in the fable? The Prometheus who gave Man wisdom, the ability to think for himself. He must have been some competing goat-herder tribe's god; a tribe who lost, and the winners wrote the history, painting him as the bad guy.
> The doctors initially thought he would quickly die after being taken off the ventilator, but he has persisted for about a month now.
Doctors can think whatever but because most of them will prefer legality over morality anyway, they leave everyone to suffer and move on to the next patient. Then you're left to care and wait, oscillating in-between hoping that your loved one dies soon or that some miracle happens. In my case it was someone who had made very clear that they didn't want to remain in case of a catastrophic event like this.
Having a strong stance on euthanasia without having experienced first-hand what it actually means is – in my opinion – just a symptom of a clear lack of empathy, dismiss any politician who does.
I know the author explicitly stated they weren’t going to share any additional details outside of this piece, but I’m curious as to how their child was injured. Like most parents, I fear for the safety of my child and want to protect them from the world. Hearing about a child injured so severely is terrifying and devastating. I have this irrational belief that if I could somehow understand and categorize all possible dangers then I might have a hope of keeping my daughter safe.
I have to say I'm really humbled to suddenly see this on the front page. Today was a particularly hard day; I won't go into details but taking care of a permanently disabled invalid involves a lot of ups and downs and some fairly messy manual labor to keep them comfortable and in good shape.
I love you all. Hug your kids if you have em.
EDIT: The above blog post here was one of three things I wrote in the immediate aftermath of the tragedy to try to process my feelings and exorcise my dark thoughts. I have two more which you can find below:
The Ballad of St. Halvor (a poem): https://www.fortressofdoors.com/st-halvor/
Four Magic Words (short story, somewhat dark): https://www.fortressofdoors.com/four-magic-words/
<3
<3 Thank you for writing so beautifully and sharing so openly. Can I ask if you've sought support or community in other parents who have gone through similar losses and are battling this newfound duty? I can't figure out whether that would help or hinder. Perhaps the latter if it is too morose or retraumatizing.
Yes, I have resources and support, thankfully.
Looks like an Orthodox Christian family? If so I will write your baptism names down at church if you are willing to share them.
That's kind of you. You can email me at lars dot doucet at gmail dot com
My love to your family too, Lars.
That you’re finding so much comfort and resilience in your faith is an inspiration, and may God bless you all as you care for each other moving forward.
I don’t know you, but I have two little girls and I’ll be hugging them very tightly in the morning when we get ready for school.
I lost my brother a while back. It never goes away. All that the living have is life. Adore it.
I am sorry. My thoughts are with you and your family.
I also had a bit of an annus horribilis last year, and ended up taking almost a year off of blogging out of a sense of embarrassment and shame. I wanted to thank you for having the courage to write this and share the work through which you have been processing everything. It really would have helped to see all of this writing about 10 months ago, so I am glad it is here for everyone else and for my own inevitable next time at "rock bottom."
I also wanted to encourage you to keep going with your creative work, because I know it can really help fathom the depths of your mind in a way that "logical" thought really can't. For me, it was playing the piano and writing some (bad) compositions. You write very well, and I hope it brings you some clarity and relief.
Thank you and my best wishes to you and your family.
Hi Lars
Thank you very much for this write-up.
I lost my 21 year old brother in law to leukemia a few years back. Even though I didn't experience the same severity of pain as my wife or in-laws, I was still there through all of it. I saw my parents-in-law taking care of their dying son, who only a few months ago was a promising ornithology student, and the fittest player on his soccer team. What you wrote resonates a lot with what they said, and what I saw them go through.
Thank you for including the reference to Daniel 3, it has been a source of strength for my in-laws too. My brother-in-law got a lot of his strength from Philippians 1:21 "For to me to live is Christ, and to die is gain."
The love and care that you provide to your son does not go unnoticed or unseen.
One thing I learned from my in-laws' tragedy, was that the grief never goes away, but you will grow stronger in dealing with it.
I will be hugging my own kids extra-hard when I get home from work this afternoon.
> One thing I learned from my in-laws' tragedy, was that the grief never goes away, but you will grow stronger in dealing with it.
Picture your life as a a big, clear ball. When the grief first happens, it's like a giant, dark ball suddenly fills up the entire ball. There's nothing else. Everything is pain. Everything is grief.
People think the dark ball is meant to shrink over time, but in my experience, that's not it at all. What happens instead is that, slowly but surely, the clear ball gets bigger.
Eventually, not every moment is grief. Not every moment is pain. It's still there. It's never smaller. It never actually even hurts less. But you grow around it.
Losing someone to death is like if a color suddenly disappeared from your whole world. Let's use yellow. You've encountered so much of your life with this yellow in it. The more closely things were associated with this person,the yellower they are--and the more wrong they look now that yellow is gone.
Over time, you get used to the way they look, but you never really forget how they looked back when they were yellow. They're not as beautiful now.
But then there are other things that you encounter that haven't ever been yellow, places that person never went or things they were never a part of. You can imagine how much more beautiful they would be if they did have yellow, but they don't look wrong to you without yellow. They just look how they look, and that's the way you expect them to be beautiful.
I don't know if these images are helpful to anyone else, but they've made a big difference to me on my own grief journey, and since today would have been my sister's birthday, I thought I'd share them.
What a helpful post!
Thank you for sharing these. My brother was murdered a year ago and today I’m trying to finish writing my victim impact statement to be read at the sentencing of his killer. I’ve been frozen in my processing for several days and your descriptions helped me place myself back in my body as I tend to disassociate when faced with the overwhelming grief of his loss.
I'm so sorry for your loss, and the added layers of pain around how it happened. The thought of trying to put that into words that have to be shared publicly hurts my heart for you.
There's nothing I can say that will make it better. Just know a stranger on the internet is taking a moment to cry with your pain.
Yes, that's a very apt description
I've been reading your comments in this thread and wanted to say thank you. I recently lost my parrot (not directly — I had rehomed her with a friend and there was an accident with my friend's parents) and so much grief and regret choked me for a few days. But the ball has grown around it. And I am grateful that I had her company for a few years. Thank you.
Stunningly beautiful write up, Lars. You have an amazing gift.
God bless you and your family.
God bless you and your family!
This is an amazing writeup. I have lived the past 10 years in a situation with many parallels to yours, and at the same time unimaginably different.
When you say "It's not hard" you hit on one of the things I've always found difficulty to tell people. It's not hard, because it's the only thing to do. That certainty means it's painful, tiring, and many other things; but not hard.
My experience is that it only becomes really hard when you contemplate alternatives, imagine things being different, or daydream of a different life.
> contemplate alternatives, imagine things being different, or daydream of a different life
I lost my mother over 23 years ago, and one of the the hardest things for the longest while was anytime I would travel somewhere amazing, whether a city or country or the top of a mountain, knowing I'm seeing something she never saw, but might have, and what a kick she'd get out of it. It's always been in the back of my mind.
Now the hardest thing is realizing she'll never know her granddaughter, and vice-versa. Not to mention how much my daughter looks like her. But that's also a beautiful reminder of the cyclical nature of life and all its seasons.
Same. My mom was so unbelievably excited about eventually having grandchildren, it was one of her biggest desires after she'd lost her job and stayed home to take care of my various illnesses. She passed 2 years and 2 days ago. She had a long and... there still aren't words to describe the absolute horror. But i stayed there because i was the only one who could work from home and who could stay positive in the face of the impossible.
By the time i realized i should've been having every conversation possible she could no longer speak well, it just went one day, i have a recording of her struggling but i don't think i could ever bring myself to listen.
One new thing that's cropped up is thinking how much she'd enjoy some new youtube video i saw, or how funny she'd think a new "advertising photoshop fails" subreddit would be. And yeah, the grandchildren. There's a strong possibly she will have never even met my future wife. She didn't see my brother get married. She won't see me get aPhD. She was 60 and was there for so many things but the cycle just keeps moving on.
Life simply takes things, we're the ones who think we deserve them. The fact that we're anything at all is the greatest gift and the greatest pain. But i believe Tolkien said, "What punishments of God are not gifts"
My hands have similarities to both my mother and father who both died recently. When I'm stroking my 5 year old's face as he falls asleep (and he takes bloody ages to fall asleep) I like to think I'm giving them a chance to touch the grandson that they knew all too briefly.
(Great job autocorrect - almost changed "stroking" to "striking" there!)
Isn't it hard to do though? I fear I may be a monster for thinking this, but is the pain of the son and yourself worth it?
Meaning, is all this being done for some hope that the miracle pulls through? What if you knew with absolute certainty there was no recover and no brain activity, only pain.
So this is hard if you have a choice, what is the right choice?
Do you think he has not already turned this question over in his mind for many agonizing hours?
I think he has thought about this question and 1000's of other scenarios that we will never know.
I write "you" figuratively, interchangeably as "one" or "oneself". I don't expect a reply. I'm asking for others sake or just simply to put my own thoughts down.
In case it helps — I actually have no expectation and hope of a miracle. Having my hopes absolutely crushed is what gets me through the day. The fear and uncertainty of having something to lose was and is far worse (to me) than the grinding daily commitment to meet his needs.
Maybe a miracle will happen one day but I have no expectation of it. I expect him to stay in that bed for years until he dies.
I see, thank you for the clarification and sharing. I don't think I could do what you're doing. That is what I mean by choice.
I'm holding my 6 week baby boy right now as he sleeps. It is painful just to read your story, but also humanizing and helpful in a way.
As someone who is very risk averse I wonder if using certain philosophies can help hedge against this kind of pain. But then it might have it's own consequences. I've used this in the past with partners (visualizing them leaving) but I'm not sure it would work here.
Is it possible to love your son so much but not feel an equal amount of pain with loss.
For the last year my father has been in a similar state, after suffering a massive stroke. You articulated some of my feelings in a beautiful way, even though our circumstances are quite different. Thank you. I wish you peace and joy.
> 17 If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. 18 But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up.
Thank you so much for sharing this. God bless you and your family.
Hey Lars. Thanks for sharing your story, so many of us are in a similar situations but dealing with it in isolation. After more than a decade of being a carer I can offer you the following:
Take care of yourself and your partner. Get some outside help if you can so you can take some breaks.
Find things that bring you joy, treat yourself.
Try and help your daughters process things and come away better people for the experience.
Treat your son with love and dignity.
Find some things in your life to be grateful for and dwell on them, it is impossible to feel sorrow and gratitude at the same time.
Sending the hugs back to you and yours.
> Find some things in your life to be grateful for and dwell on them, it is impossible to feel sorrow and gratitude at the same time.
Any advice on how to do this one. Recently I have been Noticing how no matter how many Good things I do in a year once they’re over they don’t really bring positive feelings the same way that the bad things pop up and make them selves dwelled upon.
I struggle with it too. Remind yourself that bad feelings are like storms, they will soon pass.
There is really no tricks to do this, anyone who says otherwise is lying. We are not designed to "feel happy" we are designed to reproduce successfully . Don't strive to be happy all the time.
I am sure even dalai lama has a nagging inner voice thats harshing his buzz all the time. All the stuff these folks preach is just entertainment.
Inner voice has been conditioned by evolution, food, famine, floods, climate, culture , your body, your parents and host of other fears and hopes. You cannot simply trick that voice into thinking happy thoughts.
That’s weirdly reductive. The point isn’t to feel persistently happy—happiness is fleeting— it's to not feel hopeless and inconsolably miserable. I’m chemically prone to depression— diagnoses and everything— and even at my most depressed I’ll still feel moments of happiness. It’s the pervasive lack of hope, vitality, and the ability to see what’s good in your life that’s dangerous. Feeling grateful might not be a silver bullet for being in this mental state, but trying to more objectively view your situation in context and recognizing the good parts is an important part of grounding yourself when your perspective is skewed by depression.
An addendum: not sure if you were speaking figuratively, but an inner voice constantly preoccupied with potential catastrophe (even at a small scale, like minor social embarrassment) is a pretty strong indicator of an anxiety problem, which is eminently treatable. Even for people that chafe at the prospect of medication and traditional talk therapy, CBT specialists can help you implement some practical mental tools in only a few visits without protracted emotional history explorations or anything resembling them. The technique has proven to get quick, meaningful results for everything from combat PTSD to ADHD to depression and beyond, and can be a fast path to achieving good mental hygiene. Anyone reading this who’s curious about their own anxiety level should find an online questionnaire by a reputable, specialized mental health organization (i.e. not buzzfeed, et al, a pharmaceutical company, or someone trying to sell you therapy) and be honest in your answers. You shouldn’t need to create a login or divulge any identifying information.
if you could watch that voice, maybe it will shut up or u can make peace with it?
Non-believer not believing that believers’ belief has a real impact on their subjective inner experience.
It does.
I hope this doesn't sound overly simplistic, but it has changed my life. I have struggled with anxiety and depression for most of my life. A couple of years ago, a therapist said, "Have you tried thinking of something else?" when I was explaining running through anxiety-inducing scenarios in my head.
So now when something that causes anxiety or dread starts to show up in my head, I immediately say "I don't want to think about that" and I say a little prayer. Sometimes, I keep repeating the prayer to keep my mind occupied on something besides dread.
I have joked that this is my "Bottle it up" approach to my mental health, which people usually assume is a self-deprecating joke, but there's actually a lot of truth in it. Being able to control when to mentally address these tough situations if a real skill, and is not simply ignoring the problem outright. I'm glad you shared this experience.
Yeah it felt like a revelation when someone said "you can control your thoughts" basically. I was like, "Really? Is it really that easy?" and it takes some practice but yes, you don't have to just let your brain run around thinking about whatever it wants. You can say "no". It really helps me to have a specific prayer I say instead so that my mind doesn't just jump to some other dreadful scenario.
The other most impactful thing I've done for my anxiety was uninstalling all news apps from my phone. I check the headlines one time in the morning to satiate my curiosity then I don't look at the news at all.
In theravada buddhism, this is called applying the faculty of wise attention. We have zero control over our thoughts, but we have control over the object of our attention (and it improves with practice).
When unpleasant thoughts arise, the (canonical Buddhist) strategy is to move your attention to something (anything!) else.
Using mantra (prayer) or force of will ("I close my attention to this thought") are both applications of the technique.
i try to focus on positive experiences. that can mean trying to think of a positive memory or daydream about something, but usually it is immersing myself in a game or watch a movie, or listen or a story or audio drama, or writing.
one thing about writing vs daydreaming. daydreaming tends to have a bad reputation: https://en.wikipedia.org/wiki/Daydream#Benefits_and_costs but to me, a daydream is just a story not written down. when i focus on daydreaming i am literally doing the same thing as when i am focusing on writing a story.
i also write down positive experiences so i can revisit them if i feel the need (although i never do that. it's enough for me to know that the memory is saved)
you could try listening to entertaining podcasts if you want something to distract you while doing other work.
another thing that i found when i miss someone, is that drawing them lets me feel closer to them. if you want to try that but worry about your drawing skills, i recommend taking a photo of that person, break it down into small rectangles and then reconstruct the photo one rectangle at the time. that ensures you get the proportions right even if you don't have any drawing skills and you won't get frustrated that your drawing looks wrong.
I've heard it said that "happiness is a fleeting feeling and joy is a state of being."
Any time you have the opportunity to experience gratitude, contentment and appreciation for what you do have it brings a great deal of peace.
> it is impossible to feel sorrow and gratitude at the same time.
This is very much the opposite of my experience. Being grateful even for the losses that have brought the most sorrow, the two things at the very same time, has ripped me apart, but it's also been the only way through.
ETA: I say this not to contradict you or deny your experience. I say it in case other people are thinking their experience might need to include both, so they're encouraged to realize that, for some people, it's not impossible, but necessary.
> Being grateful even for the losses that have brought the most sorrow, the two things at the very same time, has ripped me apart, but it's also been the only way through.
Whether or not you express this sentiment as a Christian, this is a core tenet of the teachings. Despite being reminded of this by a close counselor in the beginning of my own tragedy, I have yet to fully come to terms with it. I know I need to, and I try, but I'm still bitter about it, and I know I'm still only faking it. In fact, I think I'm reading this story and your comment at precisely the time I need to in order to finally admit to myself that this is also my only way through. I gotta be honest: I never expected to hear the voice of God speaking through this forum. Thank you.
I do express it as a Christian, and I don't believe I could any other way. After losing my sister and my nephew six years ago (today would have been her 36th birthday, actually), I tried mightily to come up with any other way through, and it just didn't, couldn't, happen.
There's a line at the end of the book A Song for Nagasaki where he says, "For all that has been, thank you. To all that will be, yes."
I think the journey of my life of faith is one of coming to mean that.
Peace to you.
That’s a beautiful line. Thank you for sharing it.
Agreed, this was my reaction as well. One of the most tragic feelings I've ever experienced in the realization of how lucky you are once something is gone. This is one of the defining aspects of my experience with lost relationships and the death of friends and family.
I appreciate that your post is thoughtful and has good intentions, but can i suggest not telling people how they can or cannot feel, or what they should or shouldn’t do? (hah. putting myself into this basket for a second and acknowledging this comment)
emotions are complex. you can show compassion and empathy without instruction?
inshallah
So you are instructing me not to offer instruction?
> it is impossible to feel sorrow and gratitude at the same time.
I would’ve said this too, until 12 months ago. I lost my dog suddenly. And then some weeks and months later I started to feel her presence running up alongside me when I would walk in our familiar places.
In those moments I felt elation in her presence and also utter despair in her loss all at once.
It was a strange experience but also clear as day.
Thanks so much for having written this. My deepest condolences, God bless you and your family.
Not many things I (or anyone else) can say about what your family is going through. I wish patience and courage.
Your short story "Four Magic Words" is great and I can see how it's affected by recent events. When I saw the Greek phrase "Η Aνθρώπινη Ζωή Εστίν Ιερά" / "Human life is sacred", and after having read your post about your son, I understood that you have some connection with Eastern Christianity.
Being Greek and Christian myself (but not hardcore or old fashioned) I sympathize with you on many topics and wish for the optimal outcome in your family strugles.
>>> We take this burden gladly.
This. I'm in a much less tragic situation with an intellectually disabled kid. After all the struggles to diagnose, potentially treat, and finally accept his - our - fate, the whole ordeal ended abruptly with this very same sentence. I am at peace now taking care of my kid.
Thanks for sharing your story. I want to acknowledge you we feel your devastation. Accept my virtual hugs. I wish peace and harmony to you, your family, and your son.
Thanks for sharing your story, God bless you and your family.
Thanks a lot for that write-up. Sent a very heartfelt prayer for your son. Life is hard beyond measure sometimes. Will give my daughter an extra hug when she is done with kindergarten later today; that much is for sure.
Thank you for sharing. As a new father myself, my heart goes out to you and your family.
Lars, I opened this comment box because I have been through some of what you are going through. I hoped to offer you some comfort. However, as I try to type this, I realize I cannot. Ambigous grief is a bitch. There are no platitudes I can offer. I am sorry you are going through this.
I'm not emotional man, but the post made me tear up. Thank you for writing this I found it insightful compassionate and educational. I wish you all the best.
Lars from what I've read you seem like a very strong and capable person. A lot of success, great relationships and a beautiful family. When you get to this point in life there frankly isn't much left to learn or to grow. You are the kind of soul destined to go even further. It's a brutal harsh beautiful reality. It will test and grow your faith to heights and depths that will astound. You have and will continue through this with whatever it takes. I lost my 15 year old daughter a year and a half ago. It's not the same as your circumstance but I'm sure you'll be ok. PM me if you want to talk.
I couldn't bear to finish reading your story, for which I apologize. Our son is physically and developmentally disabled and though not at all near the level of yours, he will probably require assistance for the rest of his life. I will think about your family and story often, and may God keep you all, especially your beautiful little boy.
Agree that this is very heavy. I appreciate OP's vulnerability. I've got little ones and I need to read this; I just can't right now. I'll be glad do donate to OP if that's what we're doing.
He said the article was not about asking for money
My son has a severe intellectual disability, he's non verbal, still wears diapers (age 12), and requires assistance in almost every aspect of his life. I still remember the day we received his diagnosis 9 years ago. The word "devastating" can only describe a small part of what we felt. Today, I consider him a gift from God. He made everything fall into perspective. His purity and unconditional love brings us tremendous joy, even though the physical and mental aspects of caring for him can be tiresome sometimes.
I know how it feels when calamity hits. It's ugly. But with, time it gets easier. Hang in there, and know that you're not alone.
My son turned 18 this week, and his condition is similar, with additional physical limitations (severe CP via PVL)
Parenting him has been the hardest thing I’ve ever done, but there have also been moments of joy.
Hang in there, take care of yourself, and get as much help as you can. Being a carer is a huge job.
I wrote a little here: https://x.com/dnf/status/1746775939961528693?s=20
What a beautiful young man <3 God bless him. Thank you. I know there are many parents out there going through the same circumstances. It's always heartwarming to see this kind of solidarity and support. It does help.
Thank you for your kind words, I agree that he was such a beautiful child.
I've been reflecting on all the good things about him this week, and one thing I realized today is that because he was so small, I would still pick him up and carry him around as a 10 to 12 year old sometimes. That's something other parents could only do with their children for a much shorter time, and I appreciate now that that was something special about our time together.
Hi Don - I don't know you but I feel like I do now. And your son as well. Thank you for sharing that tweet.
God bless you and your family Don.
We love you too.
I have an adult child with severe mental illness. It makes life less-than-easy, but others have it worse (including her). She will probably live with us until we check out. One of the things that concerns me, is how to help her, after we are gone.
I have also had many close associations and friends lose children, relatives, and associates; often, to unnatural causes. It has to do with the demographic I hang with.
> I have also had many close associations and friends lose children, relatives, and associates; often, to unnatural causes. It has to do with the demographic I hang with.
Perhaps this is morbid curiosity getting the best of me, but your last sentence was a surprise. What demographic do you hang out with that has such a high rate of death due to unnatural causes?
I can’t get specific. Suffice it to say that we are working to recover from destructive pasts. Sometimes, we don’t succeed.
Fair enough. I’m in the same boat, though possibly for different reasons. Best of luck to you.
I sent few suggestions to your email leveluplabs@gmail.com. Is this the best email to reach you?
Can I send you a book? My email is on my website in my bio but I cannot find a way to contact you to ask.
FWIW, in case you haven't got it from somewhere else or noticed here, he says in several places that his email is lars dot doucet at gmail dot com .
Sorry if it's presumptious to jump in in your place Lars, undskyld, but I'm going on the premise that you just missed this question.
Good luck Nerdhead; all the best Larsius.
Thank you,
Sent an email.
I appreciate you finding a way to so eloquently put your thoughts into words. For the longest time, I always felt like a terrible person or somehow socially or emotionally broken for being unable to respond to others grief. It's not that I couldn't imagine it or somewhat feel how they were feeling, but simply the wish that there was sentence or string of words I could put together to make it all okay. I guess anyone who has ever loved someone has felt the same :(
Godspeed.
I've been debating on responding here and well you can see my decision has been made. The caveat is that this response is also biased on my personal experience so your milage may vary.
But for anyone reading this who is adjacent to a close friend or relative or even a stranger that is experience traumatic loss the grieving process is a messy thing. No one experiences it the same way. Second-hand grief is similar.
So rather than "try to fix it" by saying anything, say nothing, and just be present. Just sit. That says more than words. And if you can't be there, notes of "You are on my mind" are good too.
There is no fixing grief, only going through it.
Literally nobody knows what to say including me. It’s okay that it’s not okay.
My heart goes out to you. My youngest son is the same age, with a permanent disability which for now we've managed to avoid the worst consequences of thanks to risky but ultimately successful surgeries, but there's an ever-present fear of what his future will be or when will tragedy strike. I just have to live for today, take things one day at a time, and not project into the future. Of course your circumstances are on a whole other level of difficulty and grief, one which I don't think I could handle, and I admire your ability to cope with it to the point of being able to write about it. Sending much love to you and your family.
Every parent's worst nightmare. Godspeed, Lars.
I hope and pray that the whole family and everyone his life has touched gets some closure. What you shared broke probably many of us but somewhat was one of the most strengthening things I've ever read.
Thank you. I don't know you, but I love you.
Thank you for writing this. I lost a family member recently too (not a child thankfully, but someone who’d lived a long and full life).
And to anyone who feels like telling me what a bad person I am for drawing the line in a slightly different place than you do on Euthanasia — go read Four Magic Words before you post something glib assuming you know anything about my reasoning and motivations.
Go ahead and have a reasoned debate about euthanasia if you want — I’ve never subscribed to “the person who is suffering the most this second gets to be right about everything.”
Just know five things:
1) I respect you if you would make a different decision than I would.
2) I landed in about the most controversial edge case imaginable.
3) You don’t know me
4) It has not been sentimental, romantic, or spiritually invigorating. It’s been horrible.
5) I don’t do this because I can’t emotionally bear to be parted with what’s left of him. It’s the opposite if anything.
Hey man, I don't know you and you don't know me, but if I may I'd like to point out that you don't have to explain your feelings or thoughts to a bunch of strangers on the Internet. Just getting them out there, in this form, is a gift for anyone willing to receive it.
Thank you.
I don't disagree with you, but it actually seems like a great strategy to avoid internet arguments... My grandfather used to tell a story about how when he was a child he'd get beat up on the way home by the bullies on the corner (circa 1950).
He resolved it with a similar approach - run in headfirst, fists flying, clobber everybody before they knew what hit em, and bounce. Seems a good idea to quash the trolls before they even get started.
It seems you are following the ethical course, and this is commendable. As you may already know, in ethics we distinguish between ordinary and extraordinary (or disproportionate) care. But while we may licitly refuse disproportionate care, at least in many cases, we cannot intentionally cause the death of anyone (ourselves or another; the "self-ownership" thesis is likely responsible for the view that we can licitly do anything to ourselves as if we were some kind of property, but we are not objects, and what is morally good is objective and not fully accounted for by consent, or utility). We may not purposefully speed up anyone's death, but we can, in some cases, where proportionality is preserved, permit treatment or refuse treatment, knowing that an unintended side effect is the hastening of death (like, perhaps, alleviation of pain).
In any case, know that such circumstances as yours, if we respond to them rightly, perfect us in the virtue of charity, the highest and greatest of virtues.
I wish your son, you, and your family comfort and joy. Do not despair. Fear not. Pax vobiscum.
> what is morally good is objective and not fully accounted for by consent, or utility.
Could you elaborate here? I'm curious what is meant by this.
I find your comment very distasteful. It is written as if you know The One True Path, and anyone who strays from Your Path is unethical.
I find your comment particularly distasteful in light of the fact that you were replying to a comment by the writer in which he acknowledged that people might make different choices if placed in the same situation that he was in.
Finally, some of the things you wrote are obviously wrong. For example:
>We may not purposefully speed up anyone’s death
Nonsense. If someone is trying to kill me, I may be justified in killing them.
> 4) It has not been sentimental, romantic, or spiritually invigorating. It’s been horrible.
I've been reading everything you've posted and this is my favorite line. Nothing about what's happened with my son has made me better.
Thank you, for all 3 blog posts. My wife and I experienced a still birth after a tragic cord accident on Dec 24th, two weeks from our due date. Your words have helped me bring some clarity and comfort to my situation. Thank you.
I have nothing useful to offer you other than my heartfelt tears and my sorrow. Your writing moved me in a way I cannot explain. God bless you and your family.
I have had a stressful, difficult week. Work is volatile right now, and it's taken a toll on my mental health.
Your story took me entirely out of that state, and your words regarding joy and optimism... reframing unimaginable to unfathomable, in particular... have both lifted me and left me with a feeling of unquenchable desire to help.
Thank you for sharing your story, and for being so deeply authentic throughout.
Thank you for sharing this. I've been going though it for over a decade and I rarely talk about it. I'm almost ashamed of it for reasons that I don't think I can put into words right now.
But I feel so isolated sometimes. Physically because it's so hard for us to go out, and mentally because if I share the details with 'ordinary' people it just tends to alienate them. People want to hear about softball tournaments and class plays, not feeding tubes and adult sized diapers. It's important for me to remember that I'm not uniquely cursed in having to deal with this.
I have seen many people like you respond here, but I felt a need to talk to you. I have a different story. I have convinced 2 partners over my younger life to have abortions. I was young and stupid. I thought life would continue in the grandest way it seemed then, and got caught off guard and was terrified. I have since had 2 children, and the sorrow and devastation of my past choices now haunts me. The love I lost. Not getting to hold and care for them.
You might say "get over it and stop feeling bad - you have something good," and I know I do, but the past hangs over me like a never-ending storm. How can I ever forgive myself for what I did? The thought of them safe in their mother's wombs and being ripped out...I can hardly bear it. I carry this pain daily. I have since learned that having kids is the best thing that ever happened to me. It taught me how to love in a way I hadn't ever before. Having this knowledge makes the past even harder to accept. Who would those unborn have been today? What would they have taught me? How can I be a caring person to have done this?
I can't say I can relate to your situation, so please forgive any apparent glibness, but I would gladly sign up to go through what a lot of people here have done for their children with special needs just to have the chance to have known them. It may sound easy for me to say, but be glad you didn't make my choices. If someone else reads this who did, please know that there is also a part of me that realizes I thought things would be different, and I went on the information I had, which was bad. I'm not at all judging you. You did the best you could. Despite me sounding self condemning, I'm just very regretful that I didn't make a different choice.
All this to say: I hope you find a little more validation from my story that you are on a good path, and that you are not cursed, but rather have a gift. It's a gift I chose to throw away. It sounds like it's hard to manage at times but it's very much a gift. I know that sounds dismissive and cheesy, like everything everyone would say because it sounds good and doesn't acknowledge the real sacrifices you've had to make in comparison to friends who don't understand, but I want you to know that I truly mean it, and I understand, maybe unlike others who say it, what it really means, because I look at you and want so badly what you have, if it meant having all my children alive in my life. Your child taught you how to love - deeper and more alive than anything else possibly could have. It may seem like life/God used force to shape you like this, but I'm learning that's the only way it can work sometimes. You have to get to a point where you are willing to see it differently, and God will find a way to show you that. Maybe your child's presence forced you to make a choice to break through your own ego and be willing to love them. If so, it no doubt transformed you. Learning that is the greatest lesson life can teach. You are on a good path. It won't be evident for a time, but you absolutely are. I send you my best.
This is one of the most moving things I've ever read on this site. Thanks for sharing your experience about a topic like this, where any discussion turns to the politics of the topic rather than the emotional impact it can have on real humans. Be well my friend, I'm sorry that you're having a hard time forgiving yourself.
This reduced me to tears.
I'm so sorry for the pain you've gone through due to your past choices, and the loss you've given voice to here.
I hope you find some measure of peace. Thank you for sharing what you've gone through and what you've learned from it.
I have two disabled siblings, what I wish I could do is give my parents (who are both dead now) some appreciation of how I now appreciate as a parent how hard it must have been for them and what a splendid job they did for all four of their kids.
Chiming in to say that the Ballad of St. Halvor was one of the nicest poems I’ve read in a long while, and kind of inspirational. I think I really needed that.
Where did you get that haunting image describing Elder Sophrony of Essex's quote? I love it. I love the tunnel of light juxtaposed with the abyss. And, of course, the simple table with tea.
Is the image copyrighted?
It's AI-generated. Beyond the style/composition being typically AI, the filename says:
>DALL-E-2023-12-02-15.50.18---A-serene--contemplative-scene-inspired-by-Elder-Sophrony-of-Essex-s-quote.-The-image-depicts-a-peaceful-landscape-with-a-deep--dark-abyss-in-the-backg
The quote was one of my wife’s favorites. The image is just from ChatGPT and I believe the current legal doctrine is AI generated images aren’t copyrightable.
> I love you all. Hug your kids if you have em.
Stay safe and stay healthy, your other kids still need you. Your Son will be alive forever on your heart and memories. Stronger than the death, just the love, I heard once.. stay strong!
Thank you for such a vulnerable description of your terrible journey right now.
Thank you for sharing, and for writing so clearly. I just finished Four Magic Words and enjoyed it very much, including the author's note. Just bought your book as well. I wish you joy even in these difficult circumstances.
This is not just moving but helpful.
Many years ago, being newly married, I worried about my vulnerability in case my wife died. So one night, while away from her on a business trip, I tried to imagine and fathom her potential death. I was able to do this— or I should say I BEGAN to be able to do it, when to my alarm I felt my mind beginning to detach from her.
I realized from this exercise that the price of love is grief. Grief cannot be minimized or habituated without sacrificing what makes living wonderful.
I have now been married 32 years and have a 30-year old son whom I am equally besotted with. I am fully aware that the death of either of them will vaporize me as I know me. It is a black wall. I can’t and I won’t fathom life without them.
I will simply pay the price.
> I love you all. Hug your kids if you have em.
Hi larsiusprime, thank you for sharing. Right back at you.
My brain has been turning your words over and over this morning, trying to make sense of them. Trying to understand how I feel about them. I still don't know how to feel about them, but I really connect with the humanity of your story.
Four Magic Words was brilliant, I'm sure that story will sit with me for years.
My generally bright 3-year-old son has a physical defect that will make life harder for him, and that is reparable by now-common-enough surgery, the sooner the better, but requires general anesthesia.
"Is this worth the risks of general anesthesia" has a different balance for me after reading your story. Intellectually, I know there's risk for any sort of anesthesia, but you've given me some harsh emotional reality.
I'm sorry that this happened to you and your son.
Anesthesia definitely has non-zero risks, but for what it’s worth was entirely uninvolved in this accident.
I can emphasize and relate. Unfortunately.
My wife of 10 years died of something called ADEM. "Acute disseminated encephalomyelitis". I'll save you the search, it means something (often immune system) strips the Myelin off the nerves in the brain. No Myelin, no proper electrical conduction. In my wife's case it was described as "fulminant", which means "severe and sudden onset". No kidding. She went from standing and talking to bed-ridden and not knowing who I am in 4 days. 3 days after she was "solement", meaning she wouldn't wake up fully. This is commonly described as "being in a coma". About a month and a half later I stopped supporting treatment, just like you did. I, she, were "lucky" (heh) that she didn't survive much longer and died just 3 days after.
I remember the doctors explaining the MRI (took a long while to get a sympathetic neurologist that actually sat and explained to me what's going on), the hopelessness, the decision to pull support and accept whatever happens next. I remember telling the hospital staff "just make her comfortable", though I didn't believe she was still there. Her brain was too far gone.
That decision was the hardest I had to make in my life. "yeah yeah" people might say (not you though, Lars, you know). But no. It was the hardest. To give up on the person that made your life whole. To know there will never be a replacement. Hoping (sorry, not a religious person, I don't really pray. I did try to make lots of deals with god during that time though) that things will get better, then just easier, then finally just end quickly.
Brain diseases are horrible. They frighten me beyond anything else in the world. You see your person change, disappear. That made me not believe in after life, souls, etc. What existence can there be after if you see memories disappear all at once, basic abilities like talking, moving, eating. Maybe there is something, but it's not the person anymore. That was the brain, the memories, the learned behavior and experiences they had in their lives. And when it's gone, it's gone.
I know what descending to that dark valley is like. What walking through it is like. I hope you can come back up towards the light. Eventually. Maybe.
One bit of practical advice: Reach out to psychologists (talk therapy) and to psychotherapists (psychoactive medicine). It's not a shame, it's a strength. Your brain undergoes significant changes and things get out of balance. Talking, pills - they both help. Today's psychiatric medicines are much more advanced and targeted than even 10 years ago, not to mention Hollywood's depictions. "But I'm afraid it'll change me, it won't be me anymore!" - sure, but is being you that great? You can comment here and I can share my own prescribed cocktail to your blog email.
Be strong. The sun will come back up. It won't be as bright or as warm, but it won't be dark forever.
At 49 I became a new father. My son (perfectly healthy thus far) is now 2.5 years old.
When I became a parent (a thing that the docs said was "likely impossible" given the obstacles in my and my partner's bodies, and yet here we are with what will likely be my only child ever), a number of perceptions changed, and one of them is that I can never look at any story involving parents, children and tragedy the same again.
I found it supremely difficult to read your piece but I did it anyway. ..... aaaaand I just had to pause because my eyes welled up at the end of the last sentence.
So I'm going to say nothing, because as you said, saying anything is awkward, and you already know how I feel to an extent, because you were a new father too once and terrified of stories like this (much less living one), so in honor of you sharing this part of your life story, I will make sure to hug my son when he returns from daycare shortly, because at the end of the day, love is the only currency that matters.
Keep loving that kid, even given the current situation. I know you have no choice, but keep doing it anyway. Much love to you and yours.
Wow, "Four Magic Words" is incredible. Up there with some of the best sci-fi short stories I've read.
This is timely. We just lost our unborn son unexpectedly. He had been diagnosed with some issues with the heart and other organs. We were gearing up for multiple surgeries, a high-care situation, and him potentially not lasting until teens.
We didn't get to make memories with him, or see who he would grow to become. This is a blessing and a curse. But I believe that you and I will both meet our sons again one day in a place where there is no sickness, sadness, or death.
Romans 8:16-17
[16] The Spirit himself bears witness with our spirit that we are children of God, [17] and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him.
Everyone suffers in this life. The choice is whether to suffer with him or without him.
Hi Lars,
Sorry for your loss. I myself have two sons and almost cried when I read your post.
I just wanted to respectfully disagree that losing a child was that commonplace until approximately yesterday. IMO it's such a common thing that even today millions of people around the world suffer from that [0]. It's equally horrible experience to lose a child to what you describe in your post or to lose a child due to something this: [1]. (One could argue that a child simply dying is slightly better than having them brain dead for the next X years. But... let's leave it aside for now.)
My humble suggestion would be that maybe it would help to focus on preventing other children die. But IDK, I'm not a psychologist.
Chreers!
[0] https://ourworldindata.org/child-mortality
[1] WARNING: pretty graphical https://w.wiki/8thW
I'm sorry to say i know your pain.
No words will make this easier, it just dulls over time.
I understand the motivation for stability and applaud you for that. My experiences were similar.
This is absolutely gut-wrenching.
Lars is an absolutely incredible thinker with a polymath-like range.
- He has done great professional work as a software developer
- He has pushed forward arguably one of the best economic policies for modern times(land value tax) through both a startup[1], and writing[2]. I particularly like his interview with Dwarkesh Patel[3]
- He contributes core thinking to rationalist communities. Just the other day I completely randomly encountered him as being submitter of the primary US Election 2024 market on the forecasting site manifold[1]
The two most impactful thinkers/writers in my life have now had to survive through incredible loss(Douglas Hofstadter - who lost his wife after writing GEB is the other). Wishing you all the best Lars.
Sources:
[1] https://www.valuebase.co/
[2] https://www.landisabigdeal.com/
[3] https://www.youtube.com/watch?v=sL-qkv7Pzxo
[4] https://manifold.markets/LarsDoucet/will-joe-biden-win-the-2...
I knew the name on Manifold as the creator of some of my favourite markets.
> The two most impactful thinkers/writers in my life
I am not familiar with the author, but after reading this article I am interested in learning more him and his other thoughts. Can you provide a good starting place for reading material? Specifically something that you feel affected your life.
Land is a Big Deal is a great place to start (and his three articles summarising Georgism for SSC, also on his substack named after Henry George's book "Progress and Poverty", which contain much of the same content).
I don't know about the previous author or if it's even his best, but I learned about Lars through a Slate Star Codex guest post 2-3 years ago. https://www.astralcodexten.com/p/does-georgism-work-is-land-...
Way back in 2012, this affected a lot of my thinking around software piracy/selling software, and I think a lot of it has proven pretty insightful in the intervening decade:
https://www.fortressofdoors.com/piracy-and-the-four-currenci...
The images are shot, but that may be all the attention his site is getting today.
Edit: Many others are already saying it, but thank you for sharing, Lars. No one should have go through this, and your thoughts were beautifully written. Makes me feel very grateful/humbled for so much that I take for granted.
Just in case your "not familiar with the author" meant not Lars but Douglas Hofstadter, I suppose the best place to start is the aforementioned "GEB": Gödel, Escher, Bach - an Eternal Golden Braid -- note how 'GEB' returns transposed as 'EGB in the title; that's kind of significant (IIRC, been decades since I read it). HTH!
The cruelest thing of all is that, technically speaking, his son is still alive. I’d imagine this to be far more torturous.
I have lost many close family members, but they all lost their biological lives. This just seems to be one of the worst experiences you could go through.
People are downvoting you, but yes, his situation is worse than death in a sense. In some ways it's a comfort to still have what's left of him with me, in other ways it's worse. I definitely have a DNR in place for myself. I have complicated feelings about... well, everything, which I did my best to exorcise in this piece I posted a few days ago:
https://www.fortressofdoors.com/four-magic-words/
Thank you for sharing. I've found it helps to talk about these things. When my own mother died, I didn't immediately feel sad. It was a range of emotions; I was really surprised at how much I laughed. Not that I found it funny, but something within me just seemed to break.
My father died just before Christmas - and it was similar, my wife thought I was coping a little too well. That said all I needed was for all the planned 'xmas' things to be completed and I was able to give myself the time I needed to cry and make peace with the situation. I still go for a walk most mornings and cry when I am totally by myself - not that I am ashamed of crying, but just that it feels more freeing and more open when I am standing alone on a beach.
This is fairly common. Everyone handles grief differently and it doesn’t always line up with other peoples expectations.
Thanks for writing this piece, I enjoyed it. My sympathies for your family's loss.
I feel like the most controversial idea in the story is the one where a four-word deontological requirement's truest and deepest form turns out to be a kind of consequentialist utilitarianism!
This reads like Asimov. Thank you!
Yeah, I also got vibes of my favourite sci fi authors when reading it.
I read Four Magic Words and shared it with some friends. Thanks for writing, and I wish you and your family the very best.
When your loved one is a continuing biological entity but you will never again experience them as they were… to me it was like all the magic left the world and consciousness/humanity was revealed to be just an illusion.
And, as Lars has written, there are many multipliers in the individual cases. Unfathomable indeed.
There’s closure in death.
I will make some personal comments to Lars privately, but let me say this, publicly:
I read between 10 and 100 articles or posts linked from HN every single day, and I have for years. As you can see for yourselves, I almost never comment. At this late stage in my life and career, it just seems fruitless to add my lone voice to the world of mostly-vapid, interconnected noise.
But Lar’s three poignant and vulnerable essays, as well as his comments on this post, seem to have brought out nearly universally the best people I’ve yet to see on HN or even on the larger net.
Wow. Most of you commenting are demonstrably fine people, and without calling out any in particular, I must decloak for this brief moment to say thank you for being such thoughtful, expressive, kind people.
I certainly hope some of your best comments resonate with and help Lars. However, even if not, your wisdom and humanity have helped me today — helped me process my own life and my still-too-raw tragedies.
Well done, HN “friends.” Keep up your “good works.” May we meet again, in real life or beyond.
Write more, please.
> I almost never comment. At this late stage in my life and career, it just seems fruitless to add my lone voice to the world of mostly-vapid, interconnected noise.
Late stage implies you’re older, and thus have seen a lot. You might get comments from people you’d rather not hear from, but your writing itself reaches people like me, who want to learn from your perspective.
Damn. Just, damn.
> Turns out, unfathomable tragic loss isn't very hard. It's easy, in fact. Easy in the same way that falling off a cliff is "easy"–gravity does all the work for you. It's not like climbing mount Everest, desperately putting one foot in front of the other. It's not like struggling to answer questions in a final exam. Tragic loss is just something that happens to you.
I think about this a lot. The reality of life is that we either don't live very long or we experience unimaginable tragedy. But we figure out how to keep living in the new normal, because what else can you do. I guess part of being human is being able to exist as though this isn't true, and also survive when it happens.
I’m sorry for your situation.
Having gone myself as a 5 year old sibling through something like this I wish to stress this:
Don’t let your other children become chronically mentally ill, send them to the psychotherapist and counselor and do that for years. You can’t imagine the amount of suffering they will have untreated. This is not something that you can just outlive and your children are dependent on you supporting them by giving them support from somebody who actually can support them. The scar of this trauma will run many many years, make them extremely vulnerable and can render them with a full blown disability.
You can prevent this. Don’t let other people who have no idea shame you for seeking help for this.
So weird that I started reading C. S. Lewis’ “a grief observed” yesterday and today this popped up on hn. Your comment and OP’s thread made me go from a lurker to registering an account.
I was 2.5 years old when my brother was born with complications, brain damage being one of them. Could breathe by himself, but fed through a tube and couldn’t move. 3 months later he died.
Not sure what the total impact from this event has been, but I am affected by this event even today, decades later. It’s weird how something can impact a little child that much, but the loss was/is real. Especially with kids that I played with that had siblings (at that time when I was back to zero). Not unfazed, but not mentally crippled either. My parents didn’t, unfortunately(?), take me to any counselors or so, it wasn’t even recommended by any in the medical support apparatus.
I am often reminded that “God gives and he takes” (especially Job’s book), that might be the most pragmatic approach I’ve come up with over the years. And I still miss him when the wound opens once in a while, but at least he didn’t have to suffer.
I haven’t finished the books yet, but C. S. Lewis has at least two on this topic: “a grief observed” and “the problem of pain”, the latter written before losing his wife to cancer.
I hope you and your family can come through this trying time with your hope and faith intact.
Hi,
thanks for your comment. Your story touched me immediately in my heart.
I can recommend you this book on your quest to get more insights and ideas for healing:
"Healing Developmental Trauma: How Early Trauma Affects Self-Regulation, Self-Image, and the Capacity for Relationship" from Laurence Heller, PhD
I know of Doucet not because of games, but because of his extensive work and amazing writing in favor of a land value tax. Seeing this article title last month was such a gut punch. The lessons in the article are so so valuable, however. I'm so thankful for Doucet sharing the gift of his writing on this topic, and hope that it was helpful for him to create it.
I lost my 3 1/2 year old daughter to sudden illness about 10 months ago. Be gentle to yourself and your family. There will be times where you aren’t actively feeling the grief, but they pull you into theirs or vice versa. There will be times where your love and grief for your lost child will make it easy to forget to cherish the loved ones in front of you.
As you figure out how to live life from here– may you find a path forward that is healthy, loving, and beneficial for you and those you care about.
I’m sorry for your loss and thank you for sharing that
My son has been born with brain damage due to chromosomal abnormalities. He is just 2 years old. He can't walk, talk, he is feed through tube and doesn't seem to be interested with surrounding very much. And, he is scheduled medical procedure to treat another congenital condition in couple weeks. I understand your pain and suffering. I understand how much you and your family have changed over this difficult period. We also got healthy 5 year old daughter. Devastation, strangeness, changes and hardship that is more hard that anything.
I am glad that this forum raises human suffering issues and topics beyond bits and bytes. Before my son was born I was so unaware of how much support society has built to help cope and threat complex medical issues. I had no idea we got: feeding therapists, swallow studies, sleep studies, endocrinologists and literally hundreds specialties in health industry.
Gob Bless You and Your Family
> “Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”
Saw that quote I think on HN a while ago.
Grief sucks. It's different than our other emotions. You can do all the right things and have everything going for you after, but it's still always there and never goes away. Something you truly how to live with and not be afraid to face or run from. This tragedy is different because in a way is ongoing. I found the post extremely inspirational. Best of luck on the new journey. Seems like they'll figure it out.
I've recently become a father to a son as well, and it's so difficult to imagine the magnitude of loss. We've already poured so much love into him and received so much, the thought of losing him is beyond heartbreaking. Then multiply that by 7 years and...like you said, unfathomable.
Your approach to the situation is inspiring. I honestly don't know what we'd do in this situation, but I like to think we'd find a way to continue loving him even with the understanding he'll never come back.
On a much smaller scale, I have an orchid plant my wife gave me, and the bloom from the store quickly died out. I've kept watering it every week, for the past 3 years. It's bloomed once since, interestingly enough when my wife & I agreed to get married, but since then nothing. My wife has asked me a few times why I don't throw it away, but at this point it's a part of us, until it naturally expires.
My son passed May 10 2018; I was drunk from May 11 2018 until sometime in 2022 with struggles off and on. I’d love to chat about the insane level of grief I experienced and maybe help or just listen. Come find me if you’d like.
I've come to understand that parents who have lost a child often face significant challenges in maintaining their relationship. Could you offer advice for such parents, both for before and after experiencing this tragic event, on how they can stay united and prevent further losses in their lives? Additionally, are there circumstances where it might be healthier for them not to stay together?
Coming up on the 6th anniversary of his death; my wife and I are separated and going through a divorce. I’d like to say it is all my fault because I am still emotionally unavailable but it takes two.
As for advice I think as we all relationships, communication is key. I dropped the ball here because honestly the first year I only got out of bed to go to the liquor store.
Year two, I drained my retirement to live while staying 24/7 obliterated and not dealing with what can only be called a complete loss of one’s identity and self.
I don’t think it is healthy for us to stay together because she took the loss much easier than I at least from all outward appearance.
Years 3-5 was a very introspective and healing time where I went through periods of depression and hopelessness.
I’m now in the rediscovering who I am phase because I kind of lost that along the way.
So in conclusion, a combination of LSD and therapy(CBT) allowed me to start moving forward with life and slowly getting out of a never ending cycle of grief.
That probably doesn’t answer your question but I think every one who has to go through this kind of event is going to handle it differently.
Thank you for your answer.
I’ve found after years of trying to escape all that I’ve lost. Talking about it helps the most.
You can see the PTSD and anxiety still has me up at 4:16am, I still don’t sleep well. I’m still healing and I imagine I may never fully heal but I do have hope that one day I will be better and have grown immensely through the experience but even today I have survivors guilt for being at work instead of home.
Yup something like 9/10 couples who lose a child end up separating and I totally understand
I’m deeply sorry that this happened to you both and, for whatever it’s worth to you, I’ll pray for you and your son today.
I couldn’t and wouldn’t pretend to understand what you’re going through - I’m just a stranger on the Internet that hopes that with time your struggles ease and you’re able to find a way forward.
God bless you both.
My 23 year old son passed away in march 2021 - this is exactly what i've been living. Stay strong.
I was reading this article and only at the end did it click that the author is a close childhood friend of mine, but we have since fallen out of touch. Love you, Lars, BT.
This is your first and only comment from your profile that is nearly 12 years old. Sorry it has to be a sad one.
That you Brandon? How you been?
It is me! I've been good. I've been following and playing your games for years, back to the Super Energy Apocalypse days. I'll try to find a way to reach out, but my username here follows me around the internet.
I'm lars dot doucet at gmail dot com, ping me anytime!
I lost my first son five years ago. For me it permanently damaged - or a least thus far - has damaged my ability to return to a state of "normal", leaving me feeling more acutely aware of the accumulated emotional wounds that life inflicts while simultaneously slipping a veil between living and me. It was fast. One morning he was there and that night he was not.
To have ones child trapped in a state between life and death is a darkness that I am not sure I could endure. It is good to see that his family is so loving of one another and, I suppose, that he has such strong faith because ... I just cannot ... that cycle of pain that is most acute for months and months after your child is gone would spring on you every morning as the panic sets in, every time you step in and out of their room, every time you feed them, preventing any form of healing whatsoever. For me it would in any case. I cannot express it properly. It is a tragedy and I think that he may well be in a state of shock that he will not even be able to recognize as such for a long time to come.
So beautifully put.
When I lost my son, I found comfort in two thoughts—
Grief is an illness that can only be cured by time. Your wounds heal over, but never completely fade. You gradually pack it away in a little box alongside a few physical things—small clothes, toys, photos—and try not to open it too often in case you let it all spill out, or the smells to fade. Every now and then, someone knocks the box without realising and your grief tumbles onto the floor. It can take days to fit it all back in.
> A big life can be very short.
My nephew was born by emergency c-section after my sister experienced sudden cardiac death at age 29, 8 months pregnant. They were able to restart his heart, but after six days, he had recovered no brain activity, and passed away in the loving arms of his dad.
In those six days, that little boy brought peace to every person who met him, in the worst situation any of us had ever been in, even though he never even took a breath under his own power or opened his eyes.
Every year, as the anniversaries of his birth and death come around, I spend those days trying to ask myself if I've made good use of my time like he did of his.
BIG life. Long impact. Short days.
Death can have so many meanings when I read this. I worry I'll forget what they smelled like, what they sounded like. What songs they would've been singing. What what what. The 'veil of tears' is perfectly apt. It both blinds me from the blessing I personally have to be living yet I'm I'm unaware of how short sighted I am. That beyond this veil so much of what I love is beyond the awareness of my own being. I hope he and his family finds respite.
I’m really feeling sorry for both the author and his family. Can’t imagine what they must be going through.
When I was 10 my oldest sibling went through a coma and after coming out of it some time later she did some things that my parents were not happy about. My family was going through some things and me being the youngest was completely neglected. I was shoved in a room and my family being well off all the problems were tried to be solved by money. Then just as things were getting a little better for me between 11-12 I was molested a few times. I was too scared to talk to anyone. My parents were not bothered much. 19 years later today I have PTSD and I struggle with anxiety depression panic. In my entire life I had no one to talk to and no one loved me. I was unable to make any connections in life. I do therapy which helps a little. I fell in love with someone 12 years ago which was the only time I felt something in life but she never liked me and till this day I hope for a miracle. There was a time few years ago I was unable to leave my room without panic attacks as that was the only place I felt safe. Somehow I was able to work my way into a graduate degree in computer science from a top school and a job. However I still spent the last 3 days crying alone. I deal with it every single day every single hour of my life. Life gets better some days and worse some days.
Anyway my point is that your children and your spouse need you the most right now. This is a turning point for everyone in the family. Hold them close. Talk to them. They may show they are strong and handling it well but they need you more than you might think. Some things cannot be undone. Some things cannot be changed. But many are in control today and a lot will be decided about the future at this time. So please just hold them close and tell them you love them. I will pray for you and your family.
I a sorry to hear what you’ve gone through and are still going through. I hope you find the peace you deserve.
Thank you for your kind words.
Heartbreaking that you went through all that.
I don't mean to trivialize your situation, but I recently learned about nociception [1] and your condition reminded me of what sucks about it. Ie, the emotional trauma you now live with is almost more debilitating than the initial pain from the earlier events.
It is such a terrible part of our physiology. It intends to protect us from so much pain, but it just ends up taking so much by preventing us from experiencing again. Wishing you the strength to keep working through this complexity and finding peace.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4529956/
Pain, applied surgically, by people you trust.
That previous sentence describes my father who was abusive in many strange ways. Sexual molestation was not included, so I can’t relate there.
My best advice is to succeed in spite of the barriers God placed in front of you. Ultimately it is you and God who care about what is happening moment to moment. Good luck
I've found the use of psychedelics and higher level thinking a particularly effective tool at mitigating the effects of PTSD. It's hard to explain but in some ways it's like when dr. Strange first goes to Kamar-Taj.
Terrible situation but nice that you are aware and that you suggested for him to turn to family. Needed in similar situation so and I understand it has become quite common or at least people have been more aware recently regarding trauma and cptsd (and the nightmares).
For those who have in their life people with emergencies due e.g. emotional flashbacks let me put this here: https://old.reddit.com/r/CPTSD/wiki/firstaidkit
What has helped: “From surviving to thriving” book, “The Dialectical Behavior Therapy Skills Workbook”, ipf protocol, avoid stoicism related thinking
Thank you for the suggestion. I am immediately adding the book to kindle and will start reading it today itself. I once read a suggestion about 4 years ago called 'The Body Keeps the Score' on a reddit thread. I was unable to finish that book because it was just too much for me given I could relate so much to it but adding that to the thread as that book was very important for me to understand many things for me.
It is the most famous, that is why I did not mention it, you are not alone that it’s triggering. Here is other people that felt so for example: https://old.reddit.com/r/CPTSD/comments/a93qs7/reading_the_b...
Pattesserie, a bit random but try and do sauna regularly. Start with little. Can do wonders for emotional issue release; can be very intense at first, just be prepared.
I can't give medical advice, so I'll give none.
A user recommended the use of psychedelics, I wouldn't.
But try investigating recent literature regarding to MDMA and assisted therapy (with a professional) to treat and manage PTSD. If you are able to find a professional who is up to it, it could be something to consider. Is not a magic pill, but it can catalyze great results provided it's deeply integrated in therapy.
Escitalopram Oxalate
This worked for me actually with CBT for some time now as quality of life was certainly better. But it had side effects like feeling emotionally numb and lack of sexual desire. Though I haven’t ever even kissed a girl at 31 I thought that would be relevant in the future for any relationship as I tried dating a bit year ago and I felt emotionally very distant and cold for whatever reason. It’s a common side effect of it I guess from what I hear.
I slowly weaned off of it in 2023 with my therapist suggestion as I was doing okay even without it but I may have to go back to it for some time if things get worse. Not sure I’ll talk to my therapist next month.
MDMA and EMDR have been two therapies for trauma processing. I will keep an eye for it and talk to my therapist to see if he can refer me to a clinic who can help me in a controlled environment. Safety is very important from what I know when you do either.
Thanks for your help.
Great to hear this.
> But it had side effects like feeling emotionally numb and lack of sexual desire Lot's of friends who are in Sertraline has this adverse effect.
> Though I haven’t ever even kissed a girl at 31 I don't know how successful you are at dating but even so I'll recommend you "The Book of Pook" and "Anti Dump's Machine". Are two funny books you can find online for free. Don't buy them because they are recollection of blog posts from sosuave. They helped me mature in that aspect and give some good advice.
> I will keep an eye for it and talk to my therapist to see if he can refer me to a clinic who can help me in a controlled environment.
Sounds great. Also be cautious, you shouldn't take MDMA while on a SSRI like Escitalopram.
> Thanks for your help.
You are welcome, no problem, it's glad to hear I helped in some way. :)
Thanks for the suggestions. I’ll check it out.
Generally theme is that women tend to have a good time with me. Some have wanted to take the natural next steps. But I tend not to if I don’t feel the same which is always the case and I end it as soon as it starts getting real because I am either afraid or there is some guilt associated with it. I’m not sure I will talk to my therapist about this. Interesting thing to explore in my next session. Thanks for enlightening.
Also didn’t know about mdma and ssri combination.
I have a good combination of CBT expert and a therapist who prescribes me medicine who share notes so it’s been working for me so far. I tend not to experiment things on my own without their referrals or suggestions. I’ve had bad experience with therapists before so I am very cautious about it.
Thank you for sharing your story. As you pray for the author and his family, I too wish to pray for you and yours. Take care.
My story overlaps a lot with yours, especially the parts about never being able to form secure attachments (though for slightly different reasons).
I was stuck for a very, very, very long time until I encountered Internal Family Systems therapy. It has been able to help me heal the wounds in ways CBT/DBT/talk therapy never could (and not for lack of trying).
Oh this is the worst thing that could happen to any parent, but the writing was beautiful and so moving. Thank you for sharing. I am feeling such a great sympathetic grief but also great awe at how palpable the love and care is in this writing.
I'm adding this comment as a note to anyone who's walking alongside people who are grieving, or even is in the middle of a grief experience yourself.
Ring theory [0], developed by Susan Silk, was one of the most helpful guidelines someone gave me early in my grief journey.
Picture the traumatic event or loss at the center of a set of concentric circles. At the very center are the people going through it directly. Each step outward represents one step removed from the event itself.
Everyone has permission to dump any pain or need or anything onto anyone in a larger ring than they're in, but under no circumstance should any such things be dumped into a smaller circle.
For example, when my sister and my died, her husband/his father was in the innermost circle. My mother was in a very slightly larger one. My brother and I were a circle out from that, followed by her closest friend, his parents, his brother, their other friends, etc.
It makes a really big difference not to have to try to deal with what other people need to dump when you're dealing with enough to be broken yourself.
And when in doubt? The most effective thing you can do in many circumstances is show up, stay, and not say a word. Your physical presence and willingness to sit silently in the overwhelming awkwardness speaks volumes. It tells the person you love that they aren't alone, even when being with them is really hard.
[0] https://en.m.wikipedia.org/wiki/Ring_theory_(psychology)
I went to college with Lars. He's a brilliant, wonderful person. Allow me to be one more person who doesn't know what to say. I hope that's ok.
What a profound article. Nearly brought me to tears.
A truly amazing father and a truly amazing family.
Hello,
I felt deeply moved by your story.
My first born (and only kid) just birthed with a genetic mutation, very random one that may at any point in his life manifest in various degree of danger for his life.
I don't know what tomorrow has for me but your story made me think about this deep fear of one day losing him.
And at the same time I know 100 years ago we wouldn't even have noticed it until too late, at least now we can monitor and try to prevent danger...
Courage to you and your wife. I can't fathom but I can feel sympathy to your situation.
I can relate to this situation. My father contracted COVID in December 2021. He was already suffering from dementia, having lost his ability to relate things and express himself. From what we observed, he was no longer the person we had known for many years. After contracting COVID, he became fully silent and bedridden for six months. His food was administered through pipes, and blood reports were regularly taken to monitor his health. In case of any infection, especially urinary, we had to take him to the hospital. Throughout this period, he was physically present but unresponsive.
I was unsure about what he was feeling—whether he experienced pain or had lost his ability to feel it. My mother was not ready to accept the reality, continuously supporting him during this challenging time. I cannot recollect those days clearly. He passed away six months later, but the thoughts of what he went through continue to trouble all of us. I still feel the pain. Reading this account has made me more thoughtful about his situation during those times.
Horrible. Just horrible. I could not finish it. My 3 year old boy is the most precious thing to me in the world. Losing a child is incomprehensible.
This feels horrific, this initial event essentially is the end of his son as he knows him, and eventually he will actually die. My only vaguely similar experience of this kind of thing is my grandfather with Alzheimer's, but it felt like a natural end of life scenario (a horrible one). But with my kids, and I do believe in euthanasia, I wouldn't be able to do that either. I don't believe in god, but I'd always think there's a chance that maybe things will improve. Very tough situation.
I knew soneone once who lost his wife with two small children. He started a "cheerful family" blog about how they were a cheerful family. Maybe I completely got it wrong, but it was painful to see. It seemed like denial.
Yet saying that, I am currently dealing with end'ish of life things for my father at 94, so I understand pragmatic.
My comment may be taken as wrong, but I hope that those that choose to vote (up or down) have gone through close loss before they choose to say they understand (or not).
What I will try to say is that we are with you, and that your sorrow is shared.
We cannot understand your loss, but we are moved by it, and it will mark us to a lesser degree than it has marked you, but the permanence of the mark will be remembered.
Take from us our thanks for your remembrance, and any solace that we might offer, scant as it may be, in your time of trial.
I will remember "Nikolas," the whispered song of what might have been.
How terribly sad and also very moving. Hope (is this Hope? it seems that way to me) is a powerful and beautiful virtue.
Lars, I was in studio with you at A&M. I’m devastated to hear this, and praying for you and your family.
> Nikolas has becomes a living altar to his own memory.
While I cannot fault them for this decision, it is also antithetical to the decision I'd want made for me.
If that happened to me, I do not not consider that me anymore, just some body (and not somebody) that bears a superficial resemblance.
Thank you for writing this. They say that you don't know what you have until it's gone, but reading experiences like this reminds me how precious and fragile life is, so that I can more deeply appreciate the time I do have with my loved ones.
This is so sad and well written. Lars is one of the best people I've ever met, no one should have to go through that, especially not him.
I am truly sorry for your loss. Pray that you continue to stay strong. I went through the same situation about a decade ago with a close friend of mine and it's truly the hardest of times.
> Fortunately, we have been able to qualify for public medical assistance in this regard and it looks like we are going to be financially okay for the time being
I know this is off topic but I want to call out how important public medical assistance is. Healthcare costs can truly wreck families and anyone who thinks that the government does not have a role providing healthcare assistance needs to think again.
I have been SO Medicaid-pilled by this event
I've had a similar situation with a child, and although I won't go into details it can take a few years for it to process fully, and you come out with a different life perspective.
I can't give a lot of good advice as I've had the full emotional spectrum, the world no longer seems real, and at points didn't deal with it well. But that's ok. It's part of adjusting.
Please take it easy, you aren't alone, and if it gets too dark, sleep, tiredness can make things seem a lot worse. Make sure you speak to people continue hobbies, and avoid dwelling on the thoughts.
Keep well.
What a gifted writer.
A very close friend of mine's brother was bicyling back home after his first year of college and was struck by a drunk driver, he was left in a vegetative state for about 8 years before finally passing from urinary complications. The father, also a creative person, wrote "In the Line of Fire", if you ever saw that film with Clint Eastwood. They said it was the worst and best thing to ever happen to them; I still don't understand what it means.
As a parent who has lost a son - I feel this immensely. At least you can see his face. That’s more than I can say for mine. He’ll forever be 12 years old to me. What helped me was giving back. I’m sure the road ahead will be hard, but don’t give up.
What was your son like?
I’d rather not, if you don’t mind.
No worries. I understand.
Very sorry to hear. I lost my boy five years ago and it just isn't something that ever gets better in the true sense, but we all have to learn how to live with it somehow.
Around the same timeframe and same outcome. Stay strong. I know exactly how you feel.
The writing is incredible, but what a truly unimaginable thing.
God Bless you Lars Doucet.
When you become a parent, it's like being reincarnated but your old body is still there. You have two bodies now. Eventually you grow strong enough to withstand the new flood of sensations and emotions, but the majority of your energies goes into the new body. You have so much more to protect, but ultimately you have less you can control. You are along for the ride.
My deepest condolences to the author.
An important post to remind us that most of our trials are of the lesser kind.
>The best metaphor I can give for the daily home hospice care of your own seven year old son is a monastic vocation
His son is seven. In hospice care. There are no words, because as the author says: it is unfathomable. He writes with such care and precision and grace. It's an amazing act of charity he does for us all.
I can't add anything more than what has been said. I wish Lars well and can't even begin to really feel what he is actually going through.
How utterly soulcrushing. Reading this I realized at once that both I want to be loving unconditionally to my kids like you and also my parents would never do this for me.
You and your family sound like beautiful people, and I hope you can be kind to yourself no matter what happens.
When timing is more appropriate, I'm curious to hear more in-depth about how to cling relentlessly to joy.
> My son is alive, but all of his higher mental functions have been wiped out. He still sleeps and wakes, breathes under his own power, and responds to certain stimuli, but he makes no intentional movements. He moves reflexively, and occasionally smiles and even laughs, but he can't speak and it's not clear what degree of awareness he still has of his situation, if any.
I remember when my mom got to that state when she was dying from cancer. I looked at my wife and told her that, when I'm at that state, feed me pain killers to move things along. (I didn't do that with my mom because she expressly told me that she didn't want euthanasia.)
But, when someone is in that state, is speeding along the inevitable really euthanasia? My mom was find with painkillers, even if they shortened her life by a few hours. I understand that the living need more time. (I wish I had more time with my mom.)
Forgot to include that my mom died within 12 hours after reaching that state.
Steven Colbert and Anderson Cooper once had a wonderful, deeply human conversation about grief and loss, which also touches briefly upon Colbert’s mom losing two sons and her husband in a plane crash:
https://www.youtube.com/watch?v=YB46h1koicQ
May you find similar comfort, one day.
Give your love away for free everyday. That's all I can say.
Lars, that was very deeply insightful for me. Thank you for sharing this, it helped me understand my own grief in a new light.
I wish I could say something to help you in the way your words have helped me. I only wish you some measure of happiness, in what way or form it may come, and may your future days be of peace.
This was a powerful read. I’m so sorry that the author’s family is going through all this.
I found that the quote the author put at the end of his essay was very memorable.
“Stand at the brink of the abyss of despair, and when you see that you cannot bear it anymore, draw back a little and have a cup of tea.”
Lars I'm sending you and your family much love
I would hug you guys and never let go
Stay strong and keep your faith
Thank you Lars for putting my mundane work issues into perspective and help me think about enjoying and appreciating what I have and stress (less) about what I don't, though that is the human condition. Stay strong.
My son was born with TEF/EA (TOF/OA in the UK) and needed a 4 hour surgery when he was 2 days old. The days before the surgery and the following month while he was incubated were agonising in ways I can’t even describe.
Even though my story isn’t nowhere near your situation, I can vaguely relate. To the pain you feel, but also to the strength you seem to have found, to look for the positives because, deep down, you know that being positive and embracing the situation is the best you can do for your son.
I’m sending all my love to you, your son and your family.
Writing such a beautiful article in the midst of such a tragic moment proves your talent. I almost feel like I'm committing a blasphemy because I'm immensely moved by your article. Huge respect.
I read the article and browsed a lot of comments. I did not expect to read such an article when I opened the site today.
The article and a lot of comments really touched me. I gained a completely new perspective. Reading about the feeling of loosing a child automatically sparks the imagination about my one feelings about such a tragedy. Only thinking about it is somehow horrible. It really puts every other daily concern about the children and every dispute one might have with them into perspective.
Thanks everyone for sharing your thoughts and stories. I am moved.
Lars sounds like an amazing father. My heart goes out to him and his family.
I am finding it hard to find the right words to express this so please forgive me if this comes off as insensitive.
That was a very touching piece that gave me a sense of that unfathomability Lars wrote of.
Off-topic, but
> I now have one and only one job, which is working on real estate mass appraisal valuation technology for the purposes of accurately and credibly measuring the value of land separately from buildings and improvements. This is the kind of straightforward, steady, stable, boring work that I need to support my family right now. It also conveniently lines up with my niche interests [Georgism and LVT].
Is there a link regarding this? I'd like to know more about this project.
Looks like this (https://www.valuebase.co/) from further up
Hi Lars, Maybe what was needed all along for valuation software was a game developer's touch.
My greatest satisfaction when it comes to writing software comes from making my users happy - especially those users who've felt neglected.
Gamers are a spoiled bunch. There are so many good games, and so much other great entertainment and music on top of it =).
The inability to travel is something VR will help alleviate. Not the same as actually being there, but still, it will get people that much closer to it.
“For in grief nothing “stays put.” One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?
But if a spiral, am I going up or down it?
How often — will it be for always? — how often will the vast emptiness astonish me like a complete novelty and make me say, “I never realized my loss till this moment”? The same leg is cut off time after time.” ― C.S. Lewis, A Grief Observed
brought tears to my eyes, thank you for giving out such valuable lessons by writing this article. i hope you and your family will have the best days ahead of you <3
This interview with Rob Delany about the death of his 2 year old is heart breaking. His book is also very good. https://www.youtube.com/watch?v=MP7waDOo210
I want to say all the usual clichéd things like I'm sorry for your loss but it feels like nothing even comes close to being helpful. I hope you find a way through.
The lingering life-death.
We dealt with this when my in-laws were in car accident, and my mother-in-law ended up in a coma - one day she was semi-conscious and still talking and then she just slipped away after series of micro strokes.
We all relieved when she passed - we buried her husband a few days before and were in a state of limbo as we waited as there was no hope of recovery - they did the DNR.
The lingering is the part that struck me too. Went through similar with my mother and ALS. It was hard witnessing her slowly die over months, while also having her witness our reactions, fully aware.
It is strange and cruel to have to mourn the loss of someone when they are still present.
My mom died in October. Just today, I managed to open up memories through searching her stuff. The thought of the day was that a single kid covers and, literally, can wipe out all the generations that precede. Then, I read this post and the second thought was that this happens because of the parent that lies between.
Gotta live it to understand it. Everyone will go through some kind of pain like this, the only difference is when.
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Back in college I had to read "Lament for a Son", written by a college professor that lost a son in a mountain climbing accident. The "Page left deliberately blank" hit me a bit hard, just empathizing with the emptiness.
Based on the title simply can’t read this with kids of my own that I fear for daily. I have it an upvote because I believe it’s well deserving of attention but I just… can’t… read it myself. Whatever the circumstances I am very sorry for what you have had to go through.
This is my biggest fear, I wish I could be ignorant about how fragile our existence really is. How one moment, one mistake can change things forever.
I cannot imagine there is much worse to endure than losing your child especially at a young age.
I have much sympathy for the writer and I want to wish him well.
I think what worsens our pain is that we mostly forget that not everything is under our control. In fact, maybe nothing's under our control.
The psychology of it is interesting. Somehow this worst thing in the world is bearable, and my granddad is quite ill right now and while that’s not the same at all, it feels “easy” compared to some other struggles in my life, which are objectively less painful. And yet…
I feel like that’s literally my worst nightmare.
So I’m going to feel sad for a bit, give you my best wishes, and then try as hard as possible to forget I ever read this and to purge the idea that it could ever happen to me.
It’ll be hard enough if it does. No need to worry about it beforehand.
I was depressed today and this flashed right at the top! Sorry for your loss and I am sure no words can easy out your pain. You have your family with you so this phase will move on. Life is unfair for sure but we still got a chance to make it better!
I lost my son three years ago last month and this resonates with me in ways I cannot imagine. I never expected to find this in this place today but I am both glad and sad that I did. "Unfathomable" is so painfully accurate.
This was a great read. The human conditions and the trials and tribulations faced by each and every one of us are plentiful and can often be over-encumbering. Be kind to everyone :)
Thank you for sharing your story. I remember when I lost my father while very young and the lack of it being “hard”, while being a lot of other things. You verbalized that experience very well.
Wish you the best.
It is a shame that medical bills can force you to change your way of life in the USA. In Germany or similiar countries with universal healthcare your cost would have been alomost 0$/€.
Fortunately I haven’t been saddled with enormous bills yet. We somehow qualified for public assistance. Granted we have also spent a very large number of hours on the phone and had to jump through many other hoops, and this is far from over.
> We somehow qualified for public assistance.
What's so infuriating is that you even had to "qualify", and that many (presumably) don't. It would be nice if the USA caught up and joined the world's civilised countries.
Never mind that now, sorry. My best wishes to you and yours.
I am sorry for your loss.
Thank you for writing courageously during this impossible time.
That is devastating. Beyond words. As a parent had stop reading because I could imagine that happening to my son. Eventually I went back and continued.
I hope they eventually find some comfort and some peace…
I commend this person for his capacity to write under such duress and depression. I have experienced my own tragedies over the years and during such times I can only escape.
Immense suffering one experiences is not explainable and can not be understood by people who did not experience the same. What is left is to smile and say, “I am OK”
“ Grief is just love with no place to go.”
God damn. Yes. That’s exactly it.
When I miss my brother, it’s not because I just felt bad all of a sudden. It’s because I had a great thought about him or a fond memory, and then immediately it’s a a gut punch.
Lars, thank you for sharing. And you must know that you'll be fully reunited with your son again one day. I am humbled by your family's grace and strength.
I am devastated to read this and it brings tears to my eyes.
The author of the blog post is a strong man. I can’t imagine what he is going through and I am truly sorry.
Thank you for sharing your unfathomable journey. It may sound cliché, but my thoughts and prayers will be with you, your son, and your family!
Mi más sentido pésame.
I'm sorry for your loss.
It's sad to hear that you won't be making the game, but it's completely understandable, one has to focus on family.
this doesn't mean your career has to be boring, the job is boring if we make it boring.
I would respectfully suggest, from my ignorant and disconected viewpoint, that I sincerely hope that you at least consider making indie games from time to time.
perhaps making games is therapeutic, I do not know this, but it's a hunch.
I sincerely hope none of my remarks are considered insensitive, please keep in mind we belong in different cultural backgrounds.
I'm truly sorry for this event, OP. As a father, I cannot fathom how this feels, but I have had a taste of it when my young brother-in-law was in a catastrophic car accident. I hesitate to share this story, because it may again bring hope, and I agree that hope is pain in these situations. I do not know the details of your situation and how confident the medical team is in their prognosis. If you are certain in their judgment, then please do not read the rest, because it is hopeful. I share it here, if not for you, then for others. Apologies again if this is overstepping. I will delete it if this is out of bounds.
----
My BIL was in a head-on collision with a semi (he was in a Honda Civic) on a snowy day when he was in his early 20s. He was on his way to go snowboarding.
My wife, his only sibling, got the news immediately and we both got on a 5 hr flight to the hospital where he was. My wife was heavily pregnant.
While he was initially conscious after the accident, soon an embolism formed and resulted in a blockage in his brain. As I understand it, the embolism actually should have ended up in his lungs and killed him, but due to an unknown hole in his heart, it ended up in his brain and instead caused a severe brain injury. He lost consciousness and slipped into a coma. His physical body was battered (many broken bones) and now he also had no brain function. Non-responsive.
While grieving the accident, and his loss, we met with several Drs. at the hospital and their prognosis was bleak. Even on the slim chance that he would survive, he would not ever walk, or talk, or do much of anything ever again. I also remember the dire moment when the brain MRI came back and it looked like one big cloud of fog. I had spent a career at that time in medical imaging and while I was on the engineering side, I knew this was a horrible sign and the doctors confirmed that. One doctor matter of factly and without mincing words told us we'd be best off pulling the plug soon, so that his organs could be used. We could not bring ourselves to make that decision at the time (I often wish I could remember that Doctor's name to update him on what has transpired since, but alas that whole period of time was a grief-filled haze).
He stayed in that coma for 5 months, slowly showing signs of responsiveness. Eye movement, for example. Eventually, he "woke" up, but could not speak, still not walking or even able to sit up. Over years of intense therapy and effort by him and his team (and my wife supporting all of the above), he slowly improved. All of us spent so much time talking to him, while getting little to no response back. Eventually, you could get to the point where you told a joke and he would muster a smile, maybe with his eyes at first, and then with his mouth. I still remember the day the hospital called and the nurse put him on the phone to my wife with shock to say that he had said a word and he said "I love you" to his sister. Mind you, it was very hard to understand him (and he still is a bit difficult to understand, to this day).
I don't want to write a novel about this (I could easily), but his progression continued, over years and years. Physical therapy, speech therapy, occupational therapy and more. Today, a decade later, he can walk, talk, play video games, go to the movies, he does activities like swimming and skiing with assistance from equipment and aides. He lives in an apartment that has care aides around when he needs them, but can do many things for himself. He has the mentality of roughly a 10 year old, in some ways, but he has memories of his life before the accident and maintains his old sense of humour and love for his family. He is still with us and big pieces of the "old" him are there. He is a wonderful uncle to our children, the oldest of which was weeks away from being born when his Uncle's life changed forever.
I read it all through. Yes, there are no words. But seeing "Sign up for more like this." form at the end was so confusing.
Automatic feature of ghost blogs, not something I put there for what it’s worth.
Halfway down, I can't anymore.
Astonishing. Deeply humbling. I cried so much reading it. It’s an important piece of writing.
Isn't Michael Schumacher also in a similar condition for more than a decade now?
The part that got me was where he talks about his daughters helping out with the care.
wow, that was very powerful, and i didnt make it very far before being completely overwhelmed with emotion. but i am very grateful for this insight into human nature that can only come from the extremes of human experience.
The "but if he does not" from that passage is theodicy in a nutshell.
> And honestly, at this point crying feels good. Crying isn't really when I feel like I'm suffering the most
Although I have not experienced anything even remotely as horrible as what the author has, I can still relate to this. I've been exposed to enough frustration and injustice over long enough periods of time that I can't cry about anything anymore. Last time I cried, I must have run out of tears mid-way through because I actually started chuckling at my own misfortune. I guess maybe my problems are in fact trivial in the grand scheme of things.
Crying is the appropriate response to pain, much much better than drinking, getting numb or pretending that everything is ok.
The trick is to not feel ashamed or weak for doing this, just cry and appreciate the relief it gives.
There is pain, and there is real pain. This is real pain. When life hits you like this, it's important to just endure, rather than escape. Trying to escape the pain can lead to addictions and behaviors that bring more problems. Some people are hit with pain like this and live a whole life trying to escape it, but never do. Best thing is accept, grieve, and continue on. Regardless, you will not be the same person, this will change you. Sometimes life just sucks, and there is no way of saying it doesn't, only time and love can help. However, the sun comes up every morning, and there is a sunset every night.
This is for anyone out there suffering some acute trauma like losing a loved one, or a chronic trauma like abuse over many years. I have experienced both, and it took me over 15 years to realize what had happened and to recover. I originally chose escapism. I didn't realize it at the time, but that's what it was. I was always into something, eventually even substance abuse. Ironically, escapism is how I ended learning to code, which was an escape for me. However, I also ended up being around even worse things and witnessing more death, while living broke and stressed out. This dragged me into even more suffering to the point of wanting suicide every day, but I just couldn't do it. This was a combination of escapism, and being around people with the same negativity as me.
Fortunately in time, I found myself, and realized everything that had happened, and how life can just be like that. But also how beautiful and exciting life can be as well. This would not have happened had I not met certain people that showed me what it means to love, and to be mentally strong. Also, by reading and learning you can find inspiration and love from someone that you will never meet in real life. Regardless, we need support of strong and positive people around us. We are a social species after all. When dealing with death/loss, remember the good times, be thankful for the time we had, and leave it at that - easier said than done.
The sun will rise tomorrow, and you will too. Take care, friend.
Life and its trappings are very precious. I once got slammed on here by some woke assholes for saying most people nowadays live better than John D. Rockefeller.
It’s like Sam Harris says, there are so many people who on their best day would choose to be you on your worst.
Value what you have
>What We're In For
A bit too pessimistic if one is also in the 'AI will change our future' camp. The possibility of a hospice robot is much greater than zero in the next 20 years.
If there are miracles, I wish you one
just looking at the comments, I don't think I can even bring myself to read the post.
God, I hope he wakes up. Be well!
Being a father of two (oldest 3,5 years old) this kind of thread works as a friendly reminder of thankfulness. It suddenly opens up that deep void as thinking of your own death or the edge of the universe might do. I will hug my family and appreciate life and current happiness, knowing it can all end anytime. Thanks for the reminder and love to you all .
Thank you for sharing this.
I appreciate you sharing this
Thank you for writing this
Peace be with you.
When I lost my father almost exactly a year I go, I was reminded of a comment on reddit that helped me a lot. Here it is:
Alright, here goes. I'm old. What that means is that I've survived (so far) and a lot of people I've known and loved did not. I've lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can't imagine the pain it must be to lose a child. But here's my two cents.
I wish I could say you get used to people dying. I never did. I don't want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don't want it to "not matter". I don't want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can't see.
As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.
In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, there is life.
Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out.
Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks.
From here: https://www.reddit.com/r/GriefSupport/comments/d9685e/grief_...
"Sign up for more like this"
Sad and terrible! Reminds me of a story I read when I was young.
An Indian emperor invited a wise man to his court and asked him to write a wish that will last forever. He wrote:
1. The emperor dies
2. His son dies
3. His grandson dies
The emperor was furious and ordered him to be punished. The wise man asked if he can have an opportunity to explain and the emperor agreed.
The wise man explained that he wrote what he wishes as the natural order of life in the kingdom. He asked the emperor to consider how terrible the situation would be if any of the order in that is changed. The emperor realized the truth in this and thanked the wise man.
Maybe not the best time for that story.
The Buddhists were right about something. Life is suffering. I gotta stop writing here before I get too nihilistic. The posted article and some of the stories here are tragic. I wish I had something better to say.
Well, the Buddhists are more optimistic than that! They have lots of techniques and ways of thinking to reduce suffering. I recommend reading up on their life philosophy, they’re far from nihilists.
Links ?
https://tricycle.org/beginners/
https://www.amazon.de/Buddhas-Words-Anthology-Discourses-Tea...
https://suttacentral.net/mn
https://en.wikipedia.org/wiki/Heart_Sutra
https://en.wikipedia.org/wiki/P%C4%81ramit%C4%81
https://www.amazon.de/-/en/Charles-B-Jones/dp/1611808901/
https://www.amazon.com/The-Library-of-Wisdom-and-Compassion-...
http://shinranworks.com/
The absense of the need for optimism is not the same as optimism.
The main doctrine of Buddhism is that eternal bliss is possible, how is that not optimistic? I'm a Jodo Shinshu Pure Land Buddhist and as far as I can tell all Buddhists believe in this, it's the third noble truth after all.
To me it seems more optimistic to think that our current life is somehow limited and flawed and that a mind and experience beyond it is possible (Buddhahood) than to think that it's not possible and we are stuck as limited suffering beings.
Bliss via relinquishing desire and agency is different from optimism.
Thankfully in Buddhism there is neither relinquishing desire nor agency. I think those are misconceptions.
I always found it interesting how many western religions and their followers maintain their faith in a “good” God, even in the face of terrible personal tragedy. I’m happy that people do, since it seems to help them and anything that does that is great.
I’m personally more beholden to the Warhammer (yes, out of anything…) quote: “it was the moment I began to believe, God was real, and He hated us.”.
If you accept the Christian view of God, then that God knows what it is to lose a son. He knows firsthand what he's costing you when he allows it to happen to you.
You may question his wisdom if you want. You may question his reasons for allowing it. But at least he's taken his own medicine.
There is also the part where human suffering is our problem because someone ate an apple and it gave us free will and the responsibility of our own lives. Still doesn’t change the thousands of children who died in some war zone today, or the ones who died from starvation and so on.
If you really watch that sort of thing from the sidelines with the power to stop it, then you probably aren’t too benevolent. Then again, the last time the Christian God wanted to solve “our” moral issues He drowned everyone but Noah.
Anyway, I’m happy people find comfort in their faith. I even sort of wish I could, but I just can’t get past the watching of all the evil and doing nothing to stop it. You wouldn’t let your toddlers set fire to each other either, well, I hope you wouldn’t.
Again, within the Christian view: We've walked away from God, rebelled against him, and broken everything in the process, but it's his fault that he doesn't fix everything?
God doesn't stop evil, but he does limit it, and will eventually end it completely. Why doesn't he do so immediately, when he could?
The bible's answer is that God is giving people time to repent. See, we are part of the evil that needs fixed. It's not just diseases. It's not even just other people. It's us. But we want God to address all the evil in the world that harms us (and those we care about), but not address the evil inside us (that also harms those around us).
So think carefully before you blame God for not addressing evil immediately with big, sweeping measures. He's still in the "rescue" phase; the court cases will come.
> The bible's answer is that God is giving people time to repent. See, we are part of the evil that needs fixed.
The evil that he, according to that same bronze-age goat-herders' tale, made. Any reasonable reading of the whole story says -- nay, loudly screams -- that he's the ultimate asshole.
The one redeeming character in the fable? The Prometheus who gave Man wisdom, the ability to think for himself. He must have been some competing goat-herder tribe's god; a tribe who lost, and the winners wrote the history, painting him as the bad guy.
Easier for a god to take than a man.
> The doctors initially thought he would quickly die after being taken off the ventilator, but he has persisted for about a month now.
Doctors can think whatever but because most of them will prefer legality over morality anyway, they leave everyone to suffer and move on to the next patient. Then you're left to care and wait, oscillating in-between hoping that your loved one dies soon or that some miracle happens. In my case it was someone who had made very clear that they didn't want to remain in case of a catastrophic event like this.
Having a strong stance on euthanasia without having experienced first-hand what it actually means is – in my opinion – just a symptom of a clear lack of empathy, dismiss any politician who does.
I know the author explicitly stated they weren’t going to share any additional details outside of this piece, but I’m curious as to how their child was injured. Like most parents, I fear for the safety of my child and want to protect them from the world. Hearing about a child injured so severely is terrifying and devastating. I have this irrational belief that if I could somehow understand and categorize all possible dangers then I might have a hope of keeping my daughter safe.
It was a cardiac arrest during surgery. Likely nothing preventable or predictable. Just tragic
Exactly this. A routine surgery to deal with a treatable congenital condition. One in a million events happen to somebody.
That quickly becomes helicopter parenting. I've got two young kids myself and totally understand your struggle.