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/
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.
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
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.
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.
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.
emotions are complex. you can show compassion and empathy without instruction?
inshallah
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.
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.
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.
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.
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.
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.
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.
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 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.
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.
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.
Thank you.
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.
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.
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.
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 lost my brother a while back. It never goes away. All that the living have is life. Adore it.
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.
Godspeed.
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.
Thank you so much for sharing this. God bless you and your family.
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.
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?
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.
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
God bless you and your family.
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.
Thank you. I don't know you, but I love you.
Is the image copyrighted?
>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
"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.
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.
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.
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!
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.
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.
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:
[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 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.
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.
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.
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!
And, as Lars has written, there are many multipliers in the individual cases. Unfathomable indeed.
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.
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.
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 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
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.
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.
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.
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?"
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.
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.
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
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.
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).
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
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.
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)
A truly amazing father and a truly amazing family.
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 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.
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).
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.
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.
> 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 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.
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.
God Bless you Lars Doucet.
My deepest condolences to the author.
>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.
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.
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.)
https://www.youtube.com/watch?v=YB46h1koicQ
May you find similar comfort, one day.
> 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 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.
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.”
I would hug you guys and never let go
Stay strong and keep your faith
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.
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.
That was a very touching piece that gave me a sense of that unfathomability Lars wrote of.
> 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.
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.
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
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.
It is strange and cruel to have to mourn the loss of someone when they are still present.
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Please read this book -
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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.
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.
Wish you the best.
Thank you for writing courageously during this impossible time.
I hope they eventually find some comfort and some peace…
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.
The author of the blog post is a strong man. I can’t imagine what he is going through and I am truly sorry.
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.
----
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.
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.
The trick is to not feel ashamed or weak for doing this, just cry and appreciate the relief it gives.
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.
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
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.
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_...
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.
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.