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The year I didn't survive

949 pointsby LaurenSerino3 months ago

52 comments

CobaltFire3 months ago
My son had cancer during COVID, though he was fortunate enough to beat it into remission (with the help of a huge care team).<p>I was active duty military, and he is also non-verbal and autistic.<p>The things she talks about, how focused she was and how hard it is to do any of that now, I&#x27;ve been experiencing exactly the same things. I find it hard to do anything, put anything together, etc. after 3 years of managing his care closely, being at his bedside all hours, having to scream at nurses to call away a code because he couldn&#x27;t breathe (anaphylaxis), and a ton of other things. All of this while working 50+ hours a week, including remotely from his bedside.<p>It&#x27;s like I burnt out that part of me. Maybe I&#x27;m slowly healing? But I don&#x27;t feel like it. I get minutes or hours when I can hit that stride again and it&#x27;s absolutely terrifying to realize that I can no longer keep it up.<p>I don&#x27;t know that this comment adds anything to her story. I just felt like I understood her on a level that&#x27;s hard to communicate and had the urge to share that.
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lux3 months ago
Sisyphean is the word I’ve come back to a lot myself since my wife took her life on November 6, 2024. Feeling like I’m now trying to live for both of us, grasping at ways of honouring her memory despite the incredible love we had being unable to “save” her, and somehow not at all myself anymore, but having to keep moving forward feels hopeless beyond belief.<p>I lost my dad suddenly just two months prior, and my grandma shortly before that, but the loss of your partner (and in this manner after she refused help and I watched helplessly as she spiralled in her last year) eclipses any grief or pain I had experienced before or could have even imagined.<p>But I wanted to show a little appreciation for the OP and others on here sharing their devastating losses. Knowing love inevitably turns into grief but that that is a more universal experience makes me feel a little less alone. Small blessings but at points like these, we take whatever morsels we can get.
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tombert3 months ago
It&#x27;s weird how a series of big things happening in a short period of time changes who you are as a person, and not always for the better.<p>When I failed to stop an acquaintance from killing himself a few years ago [1], it really fucked me up. I barely knew the guy, but I couldn&#x27;t stop myself from feeling guilty over it, and I still have nightmares about it.<p>It led to a severe funk of depression that I still haven&#x27;t gotten over, and it&#x27;s led to poor sleep, poor performance at work, an increased irritability towards pretty much everyone, and I&#x27;m not completely convinced that that will ever stop.<p>I&#x27;ve seen therapists, taken various medications for depression and PTSD, trauma dumped onto pretty much anyone who will listen, and I think I&#x27;m a worse person now than I was in 2021.<p>I guess the likelihood of an event like this happening approaches 1 as you get older, but it doesn&#x27;t mean it&#x27;s not terrible.<p>[1] Written in some detail here <a href="https:&#x2F;&#x2F;news.ycombinator.com&#x2F;item?id=29185822">https:&#x2F;&#x2F;news.ycombinator.com&#x2F;item?id=29185822</a>
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wonger_3 months ago
Very sad. In case you didn&#x27;t open the link yet, this is from the widow of Jake Seliger, who was very active on HN: <a href="https:&#x2F;&#x2F;news.ycombinator.com&#x2F;threads?id=jseliger">https:&#x2F;&#x2F;news.ycombinator.com&#x2F;threads?id=jseliger</a>. He died a few months ago.<p>Grieving while being a new mom must be brutal.
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tdullien3 months ago
This resonates with me very deeply. In the last few months of my 40th year, I exited my 2nd company - somewhat against my wishes (although I could&#x27;ve chosen differently). The day that deal closed my mother went into coma after complications from a routine hip surgery, and died after 9 weeks of intensive care. A few months later my dad had a brain hemorrhage leading to dementia; and due to a variety of factors I ended up taking care of a 4 year old and a 2 year old alone during weekdays; the emotional fabric of my marriage fell apart too.<p>It was a quadruple loss - losing the company I wanted to continue, losing my mother (who had provided emotional support), my father (who had previously been full of good advice), and then realizing that the support system that remained was not available.<p>Obviously this is different from losing a partner and father-of-a-child to cancer, but emotionally I recognize my own state ca. 2.5 years ago in this article - complete with the realization that the person I was before all of this is not around any more.<p>For quite a number of people the early 40s have some pretty brutal transitions in store.<p>That said, the nadir of the grief and loss is also in the rear-view mirror, and a few years later things are definitely looking up. We may not be the person we used to be, but there is such a thing as wisdom, and I think I have a much more nuanced and empathetic world view today, and a deeper appreciation of the value of lifetime.
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jll293 months ago
This was a tough story, and the comments show an ocean of additional human suffering on top of the OP&#x27;s.<p>After reading a hand full of the comments, I am scrolling over the rest, thinking &quot;wow&quot;, it&#x27;s HN, which I read it almost daily to scrutinize nerdy blogs, startup gossip and API critiques. In a way, it feels good that these same people are indeed &quot;real&quot; people with &quot;real&quot; problems, not robots or perfect beings of sorts who only IPO their tech and end up billionairs, flesh-and-bone humans.<p>Reading this I wished I could just give a big HUG to everyone out there suffering for whatever reason; we all just have one life, let&#x27;s live it in meaningful ways, let&#x27;s help each other and be good to one another because anything else is really not worth it.<p>Worn out, grief-struck after enountering death or other loss, sad, traumatized - it is all horrible but I believe anything can be overcome. No, you won&#x27;t be the same, but the other version of you can heal, can still live a good - perhaps more aware, humble, slower and more thankful - life, taking it one day at a time.<p>I&#x27;ll be throwing in a &quot;prayer for anon.&quot; - for everyone who posted here and the OP tonight: may their (your!) suffering cease, wounds heal, and meaning become clear in the end.
Balgair3 months ago
We had a similar thing happen to us in COIVD. My child was born and a few weeks later, my FiL died. We were the primary caretakers for both as one came into the world and one went out.<p>One thing I will suggest is a death doula. Birth doulas are very good if you can afford them and worth the money, at least ours was. I really wish we&#x27;d gotten a death doula too, to help out with all the dumb things about dying. The paperwork, the adult diapers, the cleaning of a large human, bedsores, the funeral homes, etc. It&#x27;s a lot of dumb little things that add up in your head that will make it want to pop.<p>Anyway, reading this piece was going back to a place and a person I was. I get that feeling of living on stress and adrenaline. I took up drinking at night to help out, and that wasn&#x27;t smart, it wrecked the little sleep I was getting. I should have gone coffee addict or vaping instead. No, honestly, nothing was going to help in the end.<p>I get the alonenese, the total burnout. For about 3 years afterwards, it was nothing but mechanical robot me. Not a lot of real feelings beside rage, which I barely had the energy for. The first year flus didn&#x27;t help at all either.<p>It is better, but like some Dr. Who transformation, I&#x27;m a new me now. I have all the memories, but I&#x27;m not the old person. I know that sounds like &#x27;Duh, we&#x27;re all like that dummy&#x27;, but this time, maybe due to the compression and intensity, it feels different. Like, you thought your first kiss would change you, and it did, but not as much as you though it would. The experience of being a new parent and having that kid&#x27;s grandfather die within a month, that changed me a <i>lot</i> more than I thought it would. And I really don&#x27;t like who it changed me into.<p>It gets better? Maybe, I don&#x27;t know yet. I hope so.
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tw19disaster3 months ago
Throwaway account. I&#x27;m fairly open about this, but don&#x27;t really want it associated for all time with me.<p>About a year after my marriage split up I went to the marriage of someone close to me. During the ceremony I had severe chest pains and was pretty sure I was having a heart attack. I didn&#x27;t want to disturb the ceremony (they were exchanging rings!) so I figured I&#x27;d wait 5 minutes then get up and call an ambulance.<p>The pain went away, and I didn&#x27;t do anything about it for a while. Later I had a panic attack when at a new GF&#x27;s place and had to leave.<p>Eventually I went to a therapist, and they pointed out these are symptoms of PTSD and trauma.<p>Anyway, I&#x27;m fine now. But it wasn&#x27;t until I had the physical symptoms that I believed the impact of these things wasn&#x27;t just something I could ignore.
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wwilim3 months ago
Grief and postpartum is a very dangerous combination. I know someone who landed in a mental facility for 5 weeks when her baby was barely 4 months old. Seek help, consult a psychiatrist, get therapy. Don&#x27;t be afraid of medication, there are antidepressants that don&#x27;t filter into your milk, and the doctor will know which ones they can safely give you, just tell them you&#x27;re breastfeeding. You can manage going to therapy with a baby, many therapists allow you to bring your child. Don&#x27;t let other people take control when they assume you&#x27;re weak and failing, you&#x27;re not. Take care.
lordfrito3 months ago
I can relate -- without getting into too much detail, I lost my son at age 16 to an undiagnosed heart condition... same thing that took my mom when I was 7. It was genetic, and passed through me. I can&#x27;t describe the depths of the grief I had, definitely changed me forever.<p>I&#x27;ll pass along some wisdom that was imparted to me at the time. A friend told me: &quot;Life is for the living&quot;. I&#x27;m still here. It&#x27;s my duty to keep carrying on in spite of it all. It&#x27;s what my son and mom would have wanted. Honor their lives by carrying on in the life you still have.
dottjt3 months ago
While not quite the same, my partner was diagnosed with stage 4 cancer a few months ago, a few days after my daughter&#x27;s 1st birthday.<p>I think one thing I worry about is my daughter possibly not growing up with a mother. Like how that will affect her.<p>It&#x27;s been traumatic for myself personally, but it hasn&#x27;t been ...I&#x27;m still highly functional and I&#x27;m still continuing to live life to the fullest.
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sonofhans3 months ago
I’ve read this thread with familiarity and empathy and want to say: some people here are describing symptoms of PTSD. A traumatic event, however brief, can cause lasting repercussions in our body and mind. If you find yourself listless, ruminating over the event, scared, over-reactive, walking through a fog — and it goes on and you seemingly don’t get better — this is exactly what PTSD feels like.<p>The initial conditions don’t have to be war or child abuse. A car accident can cause it. A variant, Complex-PTSD, is often caused by traumatic events over time that cannot be escaped, like caring for a dying loved one.<p>It’s dangerous to you and it can be hard to treat, but it often is treatable. The best thing I’ve read about it (and boy, have I read a lot about this) is The Body Keeps the Score — <a href="https:&#x2F;&#x2F;www.besselvanderkolk.com&#x2F;resources&#x2F;the-body-keeps-the-score" rel="nofollow">https:&#x2F;&#x2F;www.besselvanderkolk.com&#x2F;resources&#x2F;the-body-keeps-th...</a>. Pete Walker also has published several books, and has many important and useful writings on his website — <a href="https:&#x2F;&#x2F;www.pete-walker.com&#x2F;" rel="nofollow">https:&#x2F;&#x2F;www.pete-walker.com&#x2F;</a><p>PTSD doesn’t go away. You just cover it up until it explodes again. Please, if you think this is you, read more and try to get some help.
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bironran3 months ago
&quot;How is this our life?&quot;<p>I asked that question so many times (for reference, see my comment on Jake&#x27;s thread <a href="https:&#x2F;&#x2F;news.ycombinator.com&#x2F;item?id=41163619">https:&#x2F;&#x2F;news.ycombinator.com&#x2F;item?id=41163619</a> ). I asked it of my late wife. I asked it of my therapist. I asked it of my daughter, when she was sleeping.<p>&quot;Is this my life now?&quot;<p>The first few months were terrible. Then things started to get better. Before anyone jumps and says &quot;a few months?! That&#x27;s nothing!&quot;, there&#x27;s a thing called &quot;anticipatory grief&quot;. Look it up. (Besides, each grief journey is individual. Besides, who are you to criticize me?).<p>Then things stopped getting worse. For a while life was flat. Colorless. Dark. I moved through the motions. Dropped my daughter at preschool, worked from home, picked her up, went to the playground, went home, dinner, bedtime story, lie in bed doing nothing. Rinse and repeat. Go to sleep early to avoid feeling.<p>Then it started getting better. And better. And even better than that. Therapy, meds, pushing (omg so much pushing), friends, a new love. Things got continuously better. I&#x27;ll never forget that year, but I also now know that I can survive what I think is the 2nd worst thing that can happen to a person. I know it cannot break me.<p>And I think Bess found that out too. Parts of us died with them, but new parts are growing. Parenthood parts. Discovery parts.<p>I remember watching my wife to make sure she was breathing. Then at the hospital. Then she wasn&#x27;t. And it was terrible. A loss I cannot even describe, a part of your own soul that is torn out of you. Yet, that part was painful. Not just that, also in pain. In some sense, I was relieved she was no longer in pain. Even more relived she didn&#x27;t have to witness her mom passing away. The world turning darker and more despair filling in. She missed on milestones, but also on sadness. And, at the end, I miss her but that part, slowly, became more bearable.<p>To Bess - I can&#x27;t promise it&#x27;ll be ok. No one can. But it&#x27;ll get easier to bare.
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shadowtree3 months ago
This is ageing, for most people, unless you&#x27;re one of the few lucky ones.<p>Death and destruction is the outcome of age, on a molecular, cellular and mental level. The foundational issue addressed by religion, because how else to deal with the unfathomable dread of &quot;nothing gets really better, ever&quot;.<p>Take solace in the fact that this is true for most of your fellow creatures.<p>The concept of a happy ending, living happily ever after is a dangerous illusion. The best part is likely in the middle, or not at all. The end is pretty much always shit.<p>Zen, Stoicism, Rebirth ... so many concepts to cope with this simple, basic fact. You get born, you grow up - and then you start dying.
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dcchambers3 months ago
Beautifully written but...heartbreaking. Hard to get through this one.<p>In a few years I probably won&#x27;t be able to. I&#x27;m a married father of two, and every year stories like this hit me harder.
fossuser3 months ago
The other posts on her substack are also worth reading (and the earlier ones from his perspective) - I read through a bunch of them last August when one was posted. A tragic story well told, something that waits for all of us.
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jackconsidine3 months ago
Oh man, I’m really sorry to see Jake passed. I read their updates every few months when they’d land on HN; it made me sad to see the past tense of “dying” this time. Rest in peace
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ErigmolCt3 months ago
This is one of the most devastatingly beautiful pieces of writing I&#x27;ve ever read.
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l5870uoo9y3 months ago
“A Guide to the Good Life: The Ancient Art of Stoic Joy” by William Irvine has an entire chapter dedicated to letting go of past trauma and moving forward. The Stoic advice was “fatalism”. The Stoics&#x27; advice was “fatalism” in relation to the events that fate deals us. This is in stark contrast to the psychologizing approach of modernity where everything must be turned around and the answer must be found, preferably within the individual.<p>Here is an excerpt where author William Irvine highlights Marcus Aurelius&#x27; thoughts on fate and grief:<p>&gt; Marcus also advocates taking a fatalistic attitude toward life. To do otherwise is to rebel against nature, and such rebellions are counterproductive, if what we seek is a good life. In particular, if we reject the decrees of fate, Marcus says, we are likely to experience tranquility-disrupting grief, anger, or fear. To avoid this, we must learn to adapt ourselves to the environment into which fate has placed us and do our best to love the people with whom fate has surrounded us. We must learn to welcome whatever falls to our lot and persuade ourselves that whatever happens to us is for the best. Indeed, according to Marcus, a good man will welcome “every experience the looms of fate may weave for him.<p>Today, when I experience regrets and sadness that I can&#x27;t control, I think; it couldn&#x27;t have happened any other way.
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peakwritting3 months ago
&gt; And in the darkest hours, of which there are many, I try to remind myself that I didn’t know what happiness looked like before I had it the first time, either.<p>I&#x27;m sorry to deflate the mood, but holy damn, that is one banger of a line. So much said so briefly.
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poorcedural3 months ago
Love = loss. If you think that equation requires less from either side, you have not felt. To love, you have to lose. Lose yourself, and all that currently holds you. What are you waiting for?<p>And when your love dies and leaves you an empty husk, you can look back and embrace that loss that emptied you. Don&#x27;t hide from love&#x2F;loss. Life won&#x27;t leave you alone, life has infinite love and loss.
NickC253 months ago
Just going through this thread has reinforced the stark reality that while my struggles and issues are real and difficult, I&#x27;m incredibly fortunate to not have had to (hopefully ever) fight some of the battles others here have had to face and&#x2F;or are currently facing. My issues pale in comparison.<p>You guys are some incredibly admirable and resilient people. Infinite respect.
llsf3 months ago
Not sure if this is biology only (turned 50) or COVID or intense (work in my case) life, but I also distinctly feel that I am clearly not the same for the past ~5 years.<p>My self-diagnostic is mild burn out with a stressful work trying to get our start up to service, mild depression due I think to working remotely in my apartment, barely going outside even on weekend (my only human interactions are through zoom).<p>I am trying to improve, but it feels that the energy spent during the past 5 years to dig that hole, is equal to energy to get out of that hole... and honestly at this point, I don&#x27;t know if I can.<p>Quitting could be an option, but I have been working since I was 20yo without interruption, never had to really interview, just got hired or pulled from current job. And that feels scary to me now over 50yo to quit and maybe change career for something more social and less taxing.<p>I honestly do not know how long I can keep doing what I am currently doing. I need to keep myself in check to make sure that I do not go too far in that hole.
lynx973 months ago
I lost my father when I was 13. I never had a really good relationship to my mother. After 2 years of grieving, she directly went into a subtle type of depression. She basically soaked me in her negativity until I was finally able to move out. We have a very bad relationship these days, mostly because she is still unable to fathom how much pain she caused me in the 4 years I had to stay with her.<p>Whatever it is you are fighting with, never forget that you have far more subtle influence on your kids ten you might think. Letting things slide can have far more devastating conseuqneces to your relationships then you might think. If you dont get your act together, you might end up as an estranged parent a decade or two down the road.
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j3s3 months ago
we are millions of streams that never stop flowing -- but we love to pretend that there&#x27;s consistency to it. we like to imagine ourselves as a continuous person.<p>but we&#x27;re not. we change, moment to moment, forever, endlessly -- it doesn&#x27;t stop, ever. not when we go to sleep. not when we go through a traumatic event. not when we die.<p>a stark reminder of our fragility. i hope the author can find peace.
t435623 months ago
When my parents died, starting with my mum that shattered the world. My family didn&#x27;t stay together. I was cut adrift.<p>Time does heal though. It never stops you loving someone but it lets you gradually put something together out of the wreckage. The person you loved is no longer in pain, no longer suffering. The problem is feeling that nothing can replace the hole blown in your world.<p>Nothing does replace it exactly but you gradually build a different structure that makes life bearable. Other people need you (especially your child) to create that structure for them and when you start to do it you will see the value of overcoming your own pain.
darknavi3 months ago
I have yet to have a reason to use this, but I keep it in my pocket until do.<p>&gt; 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. &gt; &gt; — Elder Sophrony of Essex<p>It&#x27;s a quote from the end of Lars Doucet&#x27;s post, Losing my son.<p>Stay strong, and if not strong, then just stay.<p><a href="https:&#x2F;&#x2F;www.fortressofdoors.com&#x2F;i-lost-my-son&#x2F;" rel="nofollow">https:&#x2F;&#x2F;www.fortressofdoors.com&#x2F;i-lost-my-son&#x2F;</a>
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sytelus3 months ago
Amazing writing. When you become parent, the person you were at that point goes away. Growing as parent is part of letting that person go.
light_hue_13 months ago
Remember this tragedy and the millions like it when you read the news today.<p>Trump and Musk are killing the very research that has a shot at saving lives and preventing these families from being torn apart. NIH and NSF are being gutted. Universities won&#x27;t be able to do bio research at all under the new 15% cap on NIH indirect costs.<p>These decisions which save no appreciable amount of money have a real impact on people whose children must now grow up without them. As a new father this is really heartbreaking.
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vmurthy3 months ago
I rarely cry when I read (or in general) but the poignancy of this article was too much . I remember how many changes my wife&#x27;s body went through during our second pregnancy . Juxtapose all the things that Bess went through, it is too cruel to even think of . Have strength Bess &lt;3
maurits3 months ago
This vividly remembers me of &quot;The Year of Magical Thinking&quot; [1] It hit hard, and I didn&#x27;t finish the book.<p>[1]: <a href="https:&#x2F;&#x2F;en.wikipedia.org&#x2F;wiki&#x2F;The_Year_of_Magical_Thinking" rel="nofollow">https:&#x2F;&#x2F;en.wikipedia.org&#x2F;wiki&#x2F;The_Year_of_Magical_Thinking</a>
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Narann3 months ago
&gt; Friends have told me that they’re relieved I seem “like myself” even after everything that’s happened. I don’t understand how that’s possible when I frequently don’t feel like I have a self to be. Jake and I became so entangled in these last few years that it still seems like many of my thoughts belong to both of us.<p>I can only recommend to read « Éloge de l&#x27;amour » from Alain Badiou (and Nicolas Truong). It defends love as a conscientious and willing alterity of yourself, but a non-controlled alterity, an alterity puts in the hands of another.<p>That’s why, I think, people does not help that much someone that lost a love saying him&#x2F;her will be more focused on them-self. Because the lost was absolute part of them-self, and not something they actually suffer from.
sterasody3 months ago
In January 2022, my mother died in the hospital. At the time, she had severe dementia and COPD. I moved back to take care of her, but I also lost my job. The stress was insurmountable: caregiving, sleep deprivation, and poor financial condition. It&#x27;s like I used up all my energy at that time, just to fight the inevitable.<p>It&#x27;s been three years and now I can manage my life on a certain level. But all those unsightly, dark struggles still haunt me. I never overcome them. Deep down I know, I&#x27;m a runaway, forever.
kbarmettler3 months ago
Her words lived.
j_bum3 months ago
So expressively and beautifully written.
anal_reactor3 months ago
You all are writing about the loss of loved ones, and I&#x27;m like<p>&gt; You guys had loved ones?<p>There&#x27;s so much societal attention to loss, but any complaint about the inability to form meaningful relationships in the first place is usually met with enthusiastic &quot;git gud&quot;. Nobody cares about the slow burnout of knowing that you&#x27;ll always be on your own.<p>Which makes sense if you think about it. A person going through loss must&#x27;ve had the skills to get what they want in the first place, which means they might useful to the society, they deserve a second chance. A person who cannot get what they want most likely is inherently incapable of reaching their goals, which means they&#x27;re not as useful, and not worth crying over. It&#x27;s like all those people paying attention to celebrities and their problems, but ignoring the homeless. The former might release another beautiful song, the latter will not.
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Zebfross3 months ago
Having a child is hard, so having a child by yourself must be harder. All I know is that our hearts don&#x27;t fill up and can always fit more love.
andygcook3 months ago
If you didn&#x27;t make it to the end of the article, there&#x27;s a GoFundMe to help with care for Jake and Bess&#x27;s daughter, Athena: <a href="https:&#x2F;&#x2F;www.gofundme.com&#x2F;f&#x2F;secure-a-bright-future-for-bess-and-athena" rel="nofollow">https:&#x2F;&#x2F;www.gofundme.com&#x2F;f&#x2F;secure-a-bright-future-for-bess-a...</a>
b3lvedere3 months ago
Beautiful words. I am so sorry for all that hardship. I know it sucks. There is no right path.<p>All i can type is that it reminded me of some music and songtext that may or may not help give it all a place and time. <a href="https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=LpV3fO5Alto" rel="nofollow">https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=LpV3fO5Alto</a>
solaire_oa3 months ago
It&#x27;s not directly related to the article, but the music video for &quot;Moving On&quot; by James is singularly the most moving video I&#x27;ve seen about coming to terms with death and birth.<p><a href="https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=IdcN4BRpmGI" rel="nofollow">https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=IdcN4BRpmGI</a>
smoyer3 months ago
I lost my mother last Wednesday and today would have been her 85th birthday. Her life wasn&#x27;t truncated like the OP&#x27;s story or many of the comments here but ... These anecdotes are making me realize that I&#x27;m not really recognizing my loss yet.
dsign3 months ago
That terrible brutal grief is what death leaves us every time. I remember Jake&#x27;s posts. He fought, and he all of us to fight.<p><a href="https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=cZYNADOHhVY" rel="nofollow">https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=cZYNADOHhVY</a>
sgt3 months ago
Odd, I have the Substack app (on my phone). When I click on the link, I&#x27;m sent to the Substack app, which subsequently sends me back to the website, which suggests I open the app, then I open the app, and I see the Substack app without the article.
MisterBastahrd3 months ago
I can relate. I am a stubborn person, but I also have childhood trauma that sank its way deep into me. I had a gigantic fear of relaying any negative information to my family because they would often turn it back against me regardless of whether I was at fault or not. So I just didn&#x27;t respond, even when things were pretty bad.<p>About a month ago, I checked myself into a local hospital. I had severe ascites. My CO2 levels were 70%. My heart ejection fraction was 20%. I could barely walk much less breathe. I weighed 340 pounds. I had severe edema to the point that not only could I not put on socks, but flip flops barely fit on my feet. I could sit, tilt backward, and the edema in my back would act as a kickstand. Drinking a cup of coffee or eating anything more than half a burger would put me into a bout of physical pain that would last 2+ hours, and the only way to get past it was to lay down.<p>The hospital staff did paracentesis on me. They extracted 6, 10, 17, and 4 liters from me via a tube shoved into my abdomen. They put me on an around the clock Lasix drip and put a catheter in me. I urinated 2 gallons a day for 2 weeks. I entertained myself by watching the tube running from my junk to the catheter drainage bag, watching as I would periodically have bloody urine because I was passing kidney stones with so much force that they didn&#x27;t have time to hurt due to the sheer amount of fluid coming off of me. After those 2 weeks, I weighed 215 pounds. My heart&#x27;s ejection fraction improved to 50%.<p>Turns out my right lung did not have a connection to my right artery. And I have an unknown mass in my right kidney that they suspect is cancer. I had basically been operating my entire life with half an oxygen supply. As a teen, I had big time CFB athletic talent but didn&#x27;t have the stamina and it was frustrating. And now I knew why. My right heart had started to weaken. They did ultrasounds and CT scans and angiographs. The cardiologist said that my heart had no signs of damage and my arteries were completely fine, so at least I had that going for me.<p>So after not having seen a doctor since 1992, I was stuck in a hospital for a month getting around the clock medication and daily blood work and weekly paracentesis (which will be happening forever). All my blood work is normal. I also have AFib, which is the main thing they need to treat and might even help to fix some of the backflow which causes my abdomen to fill with fluid. My blood pressure is normal for the first time since I was 6 years old. When I entered the hospital, it was 187&#x2F;114. Now it&#x27;s 105&#x2F;80.<p>So in the course of a month, I went from having no doctor and no time in a hospital to a month long hospital stay accompanied with short term disability and a prognosis of needing weekly drainings forever along with 4 specialists and a primary care physician and about 8 prescriptions. I also saw a psychiatrist for the first time ever after having struck out multiple times with Betterhealth goons who wouldn&#x27;t listen and kept trying to make me meditate.<p>I am a fundamentally different person than I was when I went in. I refuse to be that person ever again. I will prioritize my own needs over other people&#x27;s feelings. I will be active because I want to be. I&#x27;ve got a plan to take my life back from the depression that hung over it for years. I have 3 or 4 product ideas that would make a hospital stay better and make the staff&#x27;s lives easier without dealing with HIPAA. So yes, it sucked, yes, it was expensive, but it helped me gain perspective and while I wish I wasn&#x27;t sick, otherwise it was totally worth it.
satisfice3 months ago
This is beautiful writing.
darkknight1073 months ago
So sad to hear. I know the words of a stranger probably do not matter but trust me when I say this, you&#x27;ll get through this. Sending you virtual hugs.
a3w3 months ago
Should we have a content warning for all the bad stuff happening here? Holy shit, I am in tears after two paragraphs.
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krunck3 months ago
Just tears.
willy1583 months ago
fk COVID, I lost my mother
WarOnPrivacy3 months ago
<p><pre><code> When I look in the mirror now, I notice all the places where my body reveals what I’ve been through. And I wonder, in a way that I wouldn’t if Jake were still alive, how this new body appears to others who don’t view it through a lens of love. </code></pre> At 20 I fell hard for a 35yo. We also became close friends and my pursuit of her was almost separate and apart. After a very long time I conceded; I met other people and eventually started a family with one of them.<p>35 years down the road I am single again and thought of that girl who didn&#x27;t happen. I did a little digging and found a recent selfie she&#x27;d taken. She&#x27;s in her 70s and I still see the same artist and dancer I fell for a lifetime ago. That she stayed with me that way - it makes me feel hopeful about what people can be to each other.
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__lbracket__3 months ago
I know it wasn&#x27;t the intention of the author in the slightest, but I feel so small and incapable after reading that piece. Good luck bess.
wegfawefgawefg3 months ago
not intending to be rude but this probably doesnt belong on hacker news. I come here to read about tech.
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