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The year I didn't survive

bessstillman.substack.com

111–120 of 276 posts

Re: The year I didn't survive

#111

My son had cancer during COVID, though he was fortunate enough to beat it into remission (with the help of a huge care team). I was active duty military, and he is also non-verbal and autistic. The things she talks about, how focused she was and how hard it is to do any of that now, I've been experiencing exactly the same things. I find it hard to do anything, put anything together, etc. after 3 years of managing his…

Throwaway: when my daughter was 4, she took a bath. My wife was in the living room doing laundry, literally 5 steps away. At that point, my daughter had just finished swimming class 3 months before. I was at work. When she called "mum!", my wife said: "Coming" and folded one final shirt. When she then entered the bathroom, my daughter floated in the tub, face down. No breathing, no sign of life anymore. My wife revived here on the floor of our living room while calling 911 and crying for help.

She had a simple fever cramp (her second) in the tub and nearly drowned because of it.

This was roughly a year ago. I remember walking out of the building at work in trance, looking for a cab, after I got the call, thinking my daughter was dead. She was back to normal (apart from the nasty infection that lead to the fever cramp) on the next day. Buy my wife and I have never been the same since. I entered the apartment 2 days later, and the tub was still filled with water and some of my daughters hair, and there was blood on the living room floor because the medics gave her sedatives and she kicked against the syringe. While cleaning my daughter's blood from the floor, I got the distinct feeling that she really died and that I was just in a very long dream in which she survived, and that I would wake up very soon to a world of sorrow. That feeling has never left me. It may explain why most things now feel completely irrelevant to me, including work.

We quickly bought a house 6 months later and left the apartment. I now realize that this was mostly motivated by the fact that we couldn't stand the look of the bathtub anymore. It was also because we simply weren't afraid anymore of the debt, of the additional work, of moving. Fear is something that only remains a numb feeling after such an experience.

She is 5 now. The worst part is that she fully remembers. A few weeks ago, she freely and cheerfully explained in daycare that she once was bathing and then cried "mum" and then "fell asleep under water". At dinner a few months ago, she also explained that to us and then laughed and mentioned that "mum must've thought I am a mermaid" and happily continued eating. It crushes me just thinking of it.

If my wife had folded 2 or 3 shirts before entering the bathroom, my daughter would be dead now. If my daughter hadn't yelled "mum!" the second the fever cramp started, of if she would've yelled it under water, she would also be dead now. In this probabilistic decision tree, the leaf where my daughter survives has a probability that is negligibly small. To my very great surprise, I have found that this inevitably leads to religion. I have never been religious before, but I have indeed found great relief in prayer and sitting around in empty churches.

Life to us is now nothing but walking on a thin crust of ice, which spans over an infinite hell of fire, horror and torture. At any time, without warning, the ice may break.

Re: The year I didn't survive

#112

You all are writing about the loss of loved ones, and I'm like > You guys had loved ones? There'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 "git gud". Nobody cares about the slow burnout of knowing that you'll always be on your own. Which makes sense if you think about it. A person going through loss m…

People don't form meaningful relationships with celebrities. Relationships are actually largely divorced from what is "useful to society".

Re: The year I didn't survive

#113
post #17

While not quite the same, my partner was diagnosed with stage 4 cancer a few months ago, a few days after my daughter's 1st birthday. I think one thing I worry about is my daughter possibly not growing up with a mother. Like how that will affect her. It's been traumatic for myself personally, but it hasn't been ...I'm still highly functional and I'm still continuing to live life to the fullest.

My wife died suddenly when my son was two years old. He’s almost seven now. So far, he’s completely fine without her. He claims he has memories of her, but I think he just remembers photos and videos that we’ve watched together. I don’t think he knows what he’s missing.

[deleted]

Re: The year I didn't survive

#114
> 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.

I can only recommend to read « Éloge de l'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.

That’s why, I think, people does not help that much someone that lost a love saying him/her will be more focused on them-self. Because the lost was absolute part of them-self, and not something they actually suffer from.

Re: The year I didn't survive

#115
post #44

Earlier quoted context omitted.

COVID coincided with my daughter being born, my parents dying unexpectedly and my partner having complete mental breakdown all while I was working a very stressful job with long hours and high stakes. Years have passed and I still feel like the battered husk of the person I was. I have good days and bad days but I'm slowly coming to accept I won't ever feel the confidence, the capability or the boundless reserves of…

Shit is this everybody? I feel like I'm constantly mourning who I used to be, like it was a different person entirely and there's no getting that level of empathy or patience back again.

[deleted]

Re: The year I didn't survive

#116

Earlier quoted context omitted.

The executive in charge of the grant-giving agencies changed policy — after looking at rates from other grants, which fell in the 10-15% range. If you want the public to believe that was wrong, you’ll need to make that case.

May I ask what your actual gripe is with level of spending that was going into research before? Is there actual evidence that shows there was an issue that needed to be immediately addressed the way it was? Some evidence of "fraud" perhaps ?

Discussions with university researchers I know personally indicated an inappropriate amount was going to the university at large, rather than project funding.

Re: The year I didn't survive

#117

My son had cancer during COVID, though he was fortunate enough to beat it into remission (with the help of a huge care team). I was active duty military, and he is also non-verbal and autistic. The things she talks about, how focused she was and how hard it is to do any of that now, I've been experiencing exactly the same things. I find it hard to do anything, put anything together, etc. after 3 years of managing his…

Throwaway: when my daughter was 4, she took a bath. My wife was in the living room doing laundry, literally 5 steps away. At that point, my daughter had just finished swimming class 3 months before. I was at work. When she called "mum!", my wife said: "Coming" and folded one final shirt. When she then entered the bathroom, my daughter floated in the tub, face down. No breathing, no sign of life anymore. My wife reviv…

Your daughter has taken it all better than you. We're all a moment away from death - on the road all it would take would be one yank on the steering wheel at the wrong time - even by some other driver.

Re: The year I didn't survive

#118

Earlier quoted context omitted.

The executive in charge of the grant-giving agencies changed policy — after looking at rates from other grants, which fell in the 10-15% range. If you want the public to believe that was wrong, you’ll need to make that case.

No they didn't look at other grants! They looked at a handful of cherry picked charities that love to donate to high profile projects. Universities subsidize these grants internally to get other donations! When I get money from say the Gates foundation, they are almost always topping up existing research not doing something new. On a high profile topic donors are attracted to. These cherry picked foundations also giv…

> The bulk of other grants includes NSF, DARPA, ONR, etc.

You only listed peer government grant agencies — which people believe have similar problems to NIH.

> And the government pays it. In every single contract with industry.

And the same people generally believe that’s also full of fraud and waste. So what’s your argument?

> They could have computed countless statistics against tens of millions of grants for hundreds of billions of dollars.

So why don’t you do that, to prove them wrong? It sounds really easy.

Re: The year I didn't survive

#119

My son had cancer during COVID, though he was fortunate enough to beat it into remission (with the help of a huge care team). I was active duty military, and he is also non-verbal and autistic. The things she talks about, how focused she was and how hard it is to do any of that now, I've been experiencing exactly the same things. I find it hard to do anything, put anything together, etc. after 3 years of managing his…

[flagged]

Re: The year I didn't survive

#120
When my parents died, starting with my mum that shattered the world. My family didn't stay together. I was cut adrift.

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.

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.

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