What happened when my wife died | Hacker News Reader

What happened when my wife died

newyorker.com

188 pointsdrdee81 comments

https://web.archive.org/web/20221023004537/https://www.newyo...

I don't know how this is relevant to HN but it feels well timed, for me.

My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's had no diagnosis. Visually, she's stunning and fit. According to every test they run on her, there appears to be nothing wrong. There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding, the persistent fluid buildup and inflammation or the new magical DVT they found when looking for something else. It could be autoimmune, it could not be, I could be anything at this point. And there's no one who either wants to or is qualified to look.

I lost it after the title and lost it more through the first section. I couldn't even tell my wife what I was reading, when she came into the room. This story is the tale of all my fears. But where's he's poor, I'm not and where he has community, however temporary and dwindling, I don't.

I cannot imagine having to explain to our daughter that mommy is gone but I'm constantly thinking about the possibility of it. I've been worrying about this eventually for a couple years now and I don't know where people find the strength but somehow they do.

I feel for the author. I dread his reality every day.

Can I ask how old you and your wife are?

> I cannot imagine having to explain to our daughter that mommy is gone

sounds like she is in her late 30s or early 40s and he should be similar

Spot on

You can still do something about it, perhaps see a rheumatologist? That collection of symptoms seem to be right in their wheelhouse

Last week's ER visit included a bunch of extra blood samples for a rheumatologist. It's hard to get one to see you without a recommendation. The doctor at the ER, this time, is the first to make that recommendation.

Yes keep going! It is hard to see one and have it covered under your insurance, but in America (if you are in the US) you can just pay out of pocket if your insurance doesn't cover it, or requires several hoops to jump through in order to get a referral.

You can also ask your primary care doctor to give you a referral. Most will oblige.

Out of pocket, the fee is probably a few hundred dollars for an hour consultation.

Best of luck!

I'm very sorry for what you are going through.

I hope you get answers. Sometimes people do finally get answers and sometimes it's life changing in a very positive way.

Very sorry to hear that. Have they performed a CT scan or MRI? Have they ruled out MS? Some of the symptoms you mentioned might be caused by MS (Multiple Sclerosis).

Had another CT scan last Friday, at the ER. They couldn't tell her the cause for the reason she visited (extreme pain, abdominal swelling, fluid buildup) but they did find that blood clot, so that's a new and terrifying change. She's had a lot of CT scans and MRIs and this is the first time she's had DVT. Now she's on blood thinners, so she doesn't die in the next month or so. Unless she cuts her finger chopping vegetables (almost happened while I was typing this) and she bleeds out.

(I have new additions to the first aid kit, for this new problem.)

Right there with you. We had a scare where my wife had to go to the hospital and stay at the emergency room for four days for stroke-like symptoms. She has many of the symptoms you've listed, and though her assigned emergency room doctor was unwilling to provide a diagnosis, it turns out that that thyroid medication has helped stabilize her condition.

What's baffling is the lack of any sort of help at the hospital and the inability to find a rheumatologist or specialist or just a regular doctor who gives a damn. They will maximize wealth extraction from their patients and provide no meaningful service. Every step of the way has felt like gross negligence when it comes my wife's medical care.

I have a couple of young kids. I stopped reading the article because I don't want to imagine my children growing up without their mother.

> What's baffling is the lack of any sort of help at the hospital and the inability to find a rheumatologist or specialist or just a regular doctor who gives a damn.

I guess this depends on your situation. I've been in and out of doctors my entire life. The doctors that give a damn are generally locked away from you if you're using some sort of state health plan or HMO. I have only ever had luck finding a good doctor by going through PPO. If you can do this, I would recommend it. PPO doctors make far, far more (because it's expensive even to you) but the specialist access is second to none. It took 3 months to get an appointment with an ENT once, and when I switched to PPO my GP had me into an ENT at my request the next week. Then you start the cycle of feeling them out and finding out which ones mesh with your goals.

It's tough, but navigating healthcare is tough. Just avoid HMO insurance and you'll do a lot better (or at least better than baseline).

Would someone be kind, and explain what PPO, ENT, HMO means? Thank you in advance.

PPO is insurance that you pay more for but you can pick the doctors and services. HMO is insurance where the insurance company picks the doctors and services. ENT is a specialist doctor.

https://m.youtube.com/watch?v=-wpHszfnJns&t=1627s

“A terrible guide to the terrible terminology of U.S. Health Insurance” by Brian David Gilbert

ENT - ear nose and throat

HMO - health maintenance organization. It's a type of insurance where you have to get referrals from someone you designate as your primary care provider.

PPO - preferred provider organization. Another type of insurance where some providers are "preferred providers" who partner with the insurance company to offer reduced rates. You don't need a referral to see a specialist, but many specialists won't see you without a referral anyway.

I have no idea what a "PPO doctor" is, I've never heard of a doctor that only accepts PPOs, that's ridiculous. I guess if a referral is required then the nebulous "they" won't refer you to the "good" ones if you have an HMO?? Except, in practice, you end up at the same handful of providers in your area no matter your insurance. I've had both HMOs and PPOs throughout the years, same shitty doctors on both.

It’s not the doctor, it’s the network. What OP was saying is that the doctors in the PPO networks seem to be much better than those in the HMO networks.

> you end up at the same handful of providers in your area no matter your insurance

This is very dependent on where you live and the density of providers. If you live in a small-to-medium size city or smaller, your description is accurate. In big cities, it's not; there is a whole set of doctors who don't work with HMOs at all, because they don't have to. They often are the best, most in demand doctors as well.

PPO is preferred provider organization. You can see specialists easier and have more latitude to pick your providers, assuming they are in the network. ENT is ear nose and throat, also called otolaryngologists, who do sinuses and hearing and throat cancers and that sort of thing. Usually they are surgeons. HMO is a health maintenance organization which is usually cheaper and offers less choice for the patients but also pays for preventative services more but can be bureaucratic if you have a rarer problem. I use Kaiser because I believe in the focus on data driven treatment and prevention, and haven’t had rare diseases yet. We have used them for vasectomy, breast cancer, cornea replacement, and trans transitioning all fine effect. I have a friend whose wife had some standard type of valve replacement and also had a good experience, tho my friend was heavily involved in meeting with the surgeons and consulting on the operation planning. Most people have common problems, so it works well as a first level, I think.

Edit: Kaiser is non profit. There are HMOs which exist primarily as cost control organizations, not primarily committed to health care, so experienced vary

PPO and HMO are symptoms of our terrible US health system. They are focused on cost control, not positive outcomes. Basically they are middle-men between doctors and their patients. They get to approve/deny care choices. They get to decide, ex post facto, whether or not they will pay for healthcare services, medicines, etc.

Here in the US, you can get surprise medical bills greater than $10k USD, due to these organizations saying "nope, not gonna pay for that."

While in some cases, homeotherapy, and similar, this is justified ... in many/most cases, it really isn't. HMO/PPO etc are all about reducing cost of the care, with these organizations funding themselves from driving down the cost of the the service.

Doctors have to hire people to handle dealing with the insurance companies (HMO/PPO/etc.) Its expensive and time consuming to deal with them.

Thanks for the info, I'll see if we can switch to PPO, especially with open enrollment coming up next month. It could be the difference between life and death.

My mom had a sudden acute glaucoma, we didn't knew it was glaucoma yet, and she was sent to hospital.

Same shit, wealth extraction, no proper care.

We begged help from her usual eye doctor, sent to him photos of her eyes that had obvious glaucoma for someone that know what glaucoma is, and he just replied she is fine.

Eventually we found on our own she had glaucoma and transferred her to a university, where students wanting to learn treated her, or tried, since they couldn't do anything without permission from licensed medics, and the medics and their teacher all were for "some reason" unexpecteadly absent.

She is getting better now, but got some permanent damage that wouldn't have happened if someone bothered to look at her.

In the initial hospital she went to, nurses told me they asked for a medical specialist to come and see her, that I could rest easy and they would fix the issue. Later on, my father asked one of the hospital administrators that is his friend, and he checked the records, and found out the nurses lied.

If that is the treatment you get when you are paying and when hospital administator is your friend, imagine when you are poor...

EDIT: in general, I don't trust medics, almost all medics I know are liars, scam artists or butchers, I have a list of medical malpractice on people I know bigger than the list of stuff fixed, including deaths caused by medical malpractice.

My personal issues are mostly self-treated, with me going to medics only because the law obliges me to to get the needed prescriptions.

My wife is pregnant, and her medics told us a lot of suspicious stuff, I hired a doula and some nurses out of my own pocket, a team that helped with childbirth of a friend of my wife, and asked them about all sketchy stuff the medic said, and they gave me the details, including the science, to prove to me the medic is actually trying to scam my wife into having a privately paid caesarean section in a expensive hospital. And indeed when I asked the medic later how much he expects the birthing to cost us, he quoted us a totally eye-watering figure and said our health insurance wouldn't cover it (a lie, we checked this already).

EDIT2: how to be a butcher: insist a guy has cancer, when everyone insists he doesn't have cancer, then have a exploratory surgery to find his cancer and kill him on the sugery table, then you say "oops, he didn't had cancer after all!"

Somewhat related here in the US - when we had our second child, it was touted that with health insurance the cost out of pocket with my insurance of having a child was less than USD$1,000. The medical care providers figured out a neat way around this: they have a bunch of professionals come to the room after your child is born and have you sign paperwork for the post-birth checkup. (What I learned: do not sign anything.) Then, each professional is billed as a separate private contractor and our health insurance didn't cover service from a private contractor, so we paid around $8K out of pocket for service that used to be covered as part of child birth. (The benefit being that the hospital doesn't get bargained down by insurance providers if you get suckered into paying out of pocket.)

I feel like there’s an legislative fix for this: If the doctor is on the premises and you allow them to see patients, they are “in network”. If the doctor doesn’t like it, they can bill the hospital separately.

You might consider going to the Mayo Clinic in Rochester, MN. It’s world renowned for diagnosis. My wife had various, random symptoms and all local doctors were either baffled or suggesting absurd things in desperation. In two days a doctor at Mayo correctly diagnosed the issue and offered suggestions on treatment that worked. The local doctors were both disbelieving and angry.

Diagnosis was POTS (brought on by pregnancy) and the solution was exercise. Most doctors gravitated to a cardiological issue and prescribed various blood pressure medicine - none of which helped.

Aside from actual medical capability, the place is astoundingly futuristic. The entire process is streamlined. Everything is done within a few days, doctors and lab visits are coordinated and scheduled dynamically and in real time, discussions and investigations are immediately synced with an app, etc. It was…mind blowing to say the least.

I'll second this!! If you haven't tried The Mayo Clinic yet, drop everything and get an appointment there.

I'll Third This!!

Indeed, just drop everything and get seen by their specialists. Even compared with good Boston hospitals (kind of known as a Silicon Valley of medicine), Mayo is several steps above. Their paradigm is to really do an exhaustive search for the root cause, and work the best treatment plan. It may not be perfect, but it is by far the best available shot.

I wish you both well.

EDIT: Expect to spend several days there with lots of tests and appointments. We've found that a number of the small house AirBnbs are reasonable and good options, and also the CoOp is great.

Yes! One thing that I found really neat was that there's a series of underground walkways between buildings on the campus, which is very nice because it gets cold in Rochester. The campus is also just very beautiful too. You're most likely going through something difficult if you find yourself there, and it feels special and nice rather than the experience of most hospitals where you can sometimes feel like a number contributing to their budget.

The tunnels extend a bit beyond the campus--there are places you can stay and not have to go outside to get there.

Unfortunately, they never figured out my issues.

I went there. Hand pain and every doctor elsewhere telling me it was some new random disease, recommending surgeries and botox injections (without doing any real testing).

At the Rochester Mayo Clinic, they did a whole spectrum of tests, multiple specialist doctors looked at the results and made a multi-angle evaluation. In the end, they said it was all in my head, and I could believe it because they went the distance to rule out other things and explained their reasoning transparently and deeply (a year later my hands were fine, and now 5 years later still fine). They even gave me a chance to ask all my questions and answered them patiently with zero pressure to get out and make way for the next patient.

It's an amazing place.

I posted to be able to vent a little bit and have it be pseudo-anonymous. The conversation had gone stale, so I figured I would type that out and walk away.

We've tried to get into Mayo but they've rejected her because she needs to get into the general diagnostics are and they don't have room. We're going to try again through the spine center because if we can get in there, they can refer across.

I wish you success! Keep trying!

Hello. I'm just a (bad) med student and I'm not qualified to make any diagnosis, but I think the clinical picture you have reported warrants further investigations and I wanted to share my thoughts while I was reading your post.

In the demographic of woman of child-bearing age the coexistence of more than one autoimmune diseases is not uncommon. Occasionally, there are even combinations of several of them [1]. As you've written, the manifestations you have reported may or may not be caused by one or more autoimmune diseases, but the ones that tipically keep autoimmune/rheumatologic origin in consideration even when labs are negative are the partial spinal fusion and the arthritis [3][2].

> According to every test they run on her, there appears to be nothing wrong

Does it? We have:

- clinical picture strongly suggesting some rheumatologic disesease: inflammation and rapid onset arthritis are typical, but DVT, random bleeding may also be linked.

- radiographic evidence of spinal fusion.

And that's exactly how (eg) Ankylosing Spondylitis has been diagnosed classically (i.e. when MRI was not an option) [4]. More generally speaking, as the name suggests, the diagnosis of most Seronegative Spondyloarthropathies is based more on clinical than laboratory criteria [3]. For how I understand it, ideally AS would be diagnosed before spinal fusion happens, but when it's present and there isn't a more likely explanation AS would be at the top of the differential diagnosis.

Another thing that came to my mind when reading DVT, bleeding, vision loss was that these are more typically seen together in of some kind of vasculitides, hence why I mentioned above an the possibiity of multiple autoimmune diseases, but these could also be explained by anything altering Virchow's triad.

> There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding,

That sounds somewhat strange. While for temporary blindness, diverticulitis and DVT the cause may already be gone by the time the patient arrives at observation, at least for rapid onset arthritis, spinal fusion and random bleeding I think a diagnosis of the cause should be made.

The reason why rheumatologic diseases should be diagnosed is that if left untreated there will be periods of remission, when nothing happens, and periods of activity, when irreversible damage accumulates. Another reason to diagnose rheumatologic diseases is that they may themselves be manifestations of some other condition (e.g. rheumatologic paraneoplastic syndromes). We don't know if your wife actually has a disease, it may be not, but that's not a risk a doctor would leave to chance. It's just standard practice.

As I've already written I'm not a doctor, but if I may give you my advice anyway I would say your wife should go and see a rheumatologist.

> There's no one who either wants to or is qualified to look.

If I were in you, at this point I would go to some known research center with maybe a university department or ward.

[1] [Coexistence of Axial Spondyloarthritis, Systemic Lupus Erythematosus, Sjögren’s Syndrome and Secondary Antiphospholipid Syndrome: Case Report](https://dergipark.org.tr/en/download/article-file/1615538)

[2] [Approaching the Patient with "Joint Pain" - CRASH! Medical Review Series ](https://www.youtube.com/watch?v=sfKWNeAywak&t=195s)

[3] [Seronegative Spondyloarthropathies - CRASH! Medical Review Series](https://youtu.be/hvQkROf5rsQ?t=377)

[4] [Progression of Spinal Fusion in Ankylosing Spondylitis](https://clinicaltrials.gov/ct2/show/NCT00085995)

AS has actually been a discussion. She has a number of indicators that are "AS adjacent," per the last rheumatologist we saw (which I forgot about, until now). It's the best diagnosis we have but the treatments he tried had severe adverse reactions and didn't show signs of improvement. Combine that with many of the tests showing up as "close but not quite" aligned with AS, he suggested we explore other avenues because he wasn't convinced of AS.

> If I were in you, at this point I would go to some known research center with maybe a university department or ward.

That's one of the reasons we moved to New England. We wanted to be close to Boston.

This is great information. Thank you. I plan to review everything.

This is a heartbreaking piece of writing. Engaging and wistful. I feel this person’s pain, and I wish I could hug them to say that the pain and loss they experience Will pass some day.

But life doesn’t give us such affordances. And this man has to deal with the most personal loss and simultaneously be the rock his daughter needs to rely on.

This hurts my heart. It hurts my soul (should such a thing exist).

All I can offer is the hope that by the time I finish reading, he has peace, and his daughter years from now knows the strength of will and the work he has done to be so present for her.

I am sure that she will, and that she is also his rock already. My mother's story is very similar. When I was young, I was self-centred and didn't appreciate how strong she was, how an amazing job she was doing. And still from her perspective having me was giving her strength and purpose, even though I was like that. But my point is that these things always leave a big footprint, even if at first you don't think much of them -and when you grow up a bit they start clicking.

I'm so grateful that I've never felt the loss of someone very close to me, but at the same time it's my biggest fear in life because I have no idea how badly it would break me and if I would have the strength that these people have.

That you’re self aware of your selfishness then that is half of the battle towards recognising that you can be better.

When I was younger I always thought I was something special. High school sorted that issue out in a certain sense. In a way that everyone is humbled.

Treasure the time you can spend with your parents, for me COVID had allowed me to spend so much time with my parents, to be able to see them as peers. And I found that as something special.

Oh God, I saw the title and was kind of scared of reading this... I mean, I'm young still, not married or anything, but, I think I am a very empathetic person and kind of like to be understanding of other people's lives and feelings, maybe because I feel it's a way of expanding my own life perspective or something, but anyway I was reading this and feeling pretty emotional during the whole thing and then I read the final sentence that Lilly said and I basically just... Started crying, so those were a few awkward minutes... It's an extremely raw and well-written piece... Ahh that's a strange way to feel on a Sunday...

I don’t mean to police you and you probably don’t mean harm, but what you said and how you said it is bound to rub someone off the wrong way in the future.

In general, don’t tell people who are going through something that you empathize with their struggles, real and painful struggles which you have no share in suffering, because you benefit from their stories by making you wiser about life. It’s also presumptuous to say that you understand other people’s lives or experiences because you heard or read a small part of what they’re going through.

Empathy is about seeing another person as a dignified equal, making no judgments, sharing that person’s pain, and gaining nothing from it.

I'm sorry it apparently rubbed you off the wrong way, but I really meant no judgment or claiming that reading this makes me feel better about myself because I take valuable lessons from it while somehow being dettached from the real consequences as you rightly point out.

I ended up empathizing more peraphs because I have experienced some level of loss in my life both from family members and friends when I was very very young, and I feel that reading a text line this one many decades later probably triggered something in my subconscious in that I could probably understand how this dad was feeling in a way that I could not comprehend when I experienced those aforementioned losses when I was much younger.

I'm not claiming to understand his exact situation, I'm not married, I don't have kids and it's not something you can project or relativize in any way, we're on the same page there.

I just meant that understanding part of the feelings of grief and the innocent way that Lilly near the end of the article says she'd search every cloud just moved me in a way that I also found unexpected myself, that's all. I know I'm not special and I don't want to be or claim to be, because I know everybody will experience loss, but, simultaneously, this just hit me more than I expected it would which is what moved me to write the above comment, it was truly sincere.

I didn't take or see any selfishness in your comment. You can certainly empathize with someone and feel for them without having been in their shoes. That is the whole point of good writing (which you experienced). It is supposed to do that, to transport you there. You felt the author's lived experience and their is nothing wrong with that. It is supposed to expand your life experience and make you think.

You have nothing to feel ashamed about or to apologize for. The person who replied to you at best appears to have misunderstood what you said.

Oh knock it off.

Considering how I gave my piece as kindly as possible and how yours is just a self-assured dismissal, I think it's you who should knock it off. :)

Your comment didn't come off as kind. At best it just seems like you misunderstood the comment you were replying to.

You said: "...don't tell people who are going through something that you empathize with their struggles, real and painful struggles which you have no share in suffering."

The person you replied to didn't do this.

Misunderstanding is unkind? Did I misunderstand unkindly?

As I said in the previous comment, I think that the people dying on a hill to defend OP are completely missing the fact that people understand others’ statements according to their own circumstances. This is an inevitable limitation of the subjective human experience, and this is why no one can ever make the position that nothing that they say is offensive—you simply don’t know what others have gone through which they are using to understand the things you say.

I really don’t see what’s so different with what I’m saying with, say, some misunderstood law or policy at work or business requirement because the writer thought of the wording differently than the reader. I pointed out that there’s no need to demonize the commenter, but somehow people feel the need to protect him lol.

Then again, maybe you guys have been incorrectly called out on Twitter, but that doesn’t make you right in the same way that I’m not necessarily in the right here.

Stop. This has got to be the worst attempt at gatekeeping I’ve seen. Now we are not even allowed to have empathy! Just absolutely ridiculous.

You can absolutely empathize with people in more dire situations than you are. Why? Because we are perfectly capable of putting ourselves in other people’s shoes, because we can be compassionate, because we can be understanding, because we can _feel_.

Btw, that world you live in is absolutely terrible. Can you imagine if we couldn’t empathize with someone who lost a wife, or a son, or a loved one, because I didn’t? What a bleak, sad world you promote.

And do yourself a favor and look up the definition of empathy.

Why don’t you tell me what the definition of empathy is, and then go back to the comment that I responded to and show me how it is logically impossible to interpret it as the commenter making the struggle about him/herself, considering all the I’s she used?

For someone who supposedly has empathy, you care very little about how your own words (or those whom you agree with) can be seen in a different light by the simple fact that you don’t know what other people are going through, and people use their own experiences to interpret the meanings of things. Considering how there’s acknowledgement ob my end that maybe the commenter didn’t mean any harm, you’re overacting like your most basic freedoms are being trampled upon, which they aren’t.

I love this YouTube channel "camping with steve". He recently lost his wife suddenly and I'm grateful for him sharing his journey with me and others (via his YouTube channel). Life is hard, we need to help eachother.

Ah yes, so sad. I'd only watched two or three of his stealth camping episodes, enjoyed it, and then a few days days later that video pops up on my YouTube homepage...

I know what it is like to be asked that unanswerable question: “where is mummy?” I gasped when it appeared at the end of the essay.

The thing about having a kid is you have to get up and keep moving. The author decided to clean up and shave, but even if you don’t you can’t spend all your time moping. The kid needs your help.

I'm waiting to be asked that question. I'm fairly unprepared, but not at all sure the "up in the sky" answer is the best.

Completely true that a kid keeps you moving and that's very helpful.

My best friend’s wife is in the process of dying right now after qualifying for and self-choosing hospice following persistent and progressing medical issues. He was looking for graveyards yesterday while she continues to pass… I am one of his primary support structures and this is hard for me, too. I just want to be as normal as possible for/around him, to be a rock. But I have never been in this position for someone before and I don’t know what would be most helpful. If anyone has, or possessed the empathy and EQ to be truly attuned to an impossible situation like this, can you please reach me through my profile or respond to this comment? With gratitude in advance.

(My partner died two months ago and I was left to care for a 20 month old toddler)

If you're one of his primary support structures, you're already doing great. If you weren't, he'd have chosen someone else.

Some situations just suck. Don't expect to be able to miraculously help your friend. Don't expect him to get better quickly. Perhaps he will, perhaps he won't. You're there for him, that's mostly all you can do.

If you must, ask him how else you can help. Each situation is different and each person is different, he'll know better than me.

I'm sorry for your loss. That really does suck.

Just listen. Be thoughtful. Let him lean on you. It will be a heavy burden, but for those you love, no burden is too great.

My brother-in-law passed about 6 years ago, after dealing with strokes, seizures, etc. I was in the room with my sister-in-law and him when they took him off life support (no brain activity). His illness was long, and he suffered. I wished he hadn't. He was a great guy, and I miss him.

My SIL has a large extended family, and we all helped out. Sometimes, just being in the same room, bringing things over, listening is just what the (real) doctors order.

Just be there, be present. Look for him struggling with something, and help him do that thing. Don't ask, don't push your way in to it. If it looks like he can't do simple things, let him grieve, and you handle those. He will need processing time. Help him get it. Some people need to be busy with physical things to process. Some people need to be alone to process. But they need people nearby, even if alone.

Everyone is different, every person processes grief differently. There's no real "right" way for this. And be aware that after a time, he may want to change some things in his life, to not be reminded of this time. This is not necessarily burying it. It is moving on.

the most important qualities are patience and forgiveness.

your friend is supporting his wife, and she shares her pain and grief with him, while he shares his pain and grief with you.

here is an interesting article that describes this support model as multiple rings around the person that is sick.

https://www.latimes.com/opinion/op-ed/la-xpm-2013-apr-07-la-...

your friends wife is at the center, your friend is the inner circle, next are his family and you. you are supporting those inside the circle, and you get help from outside the circle.

HN is the furthermost layer outside. maybe you have friends that you can turn to for your support, but if not, reaching out here on HN is the right direction. you are welcome to dump your pain here or in private to anyone who offers to listen.

i have been on that inner circle before, and on outer ones. feel free to reach out.

It’s hard man. What you’re doing for him is good <3

When my sister was sick the best thing we had was an entire church community helping us out - people taking turns babysitting, various people bringing food to us, people I barely knew and friends of people I barely knew offering help, people simply hanging out and being there for us, tons of people who had been thru similar things telling me I could call them at any time (I never did because I had trouble asking for help and acknowledging my emotions back then)

What I’m getting at is I’d assume the more of a community you can get around the situation, the better - and the greater the variety of needs that can be serviced (emotional or time-based) and the longer lasting that help can last. In a similar way to how constructing an org can be a lot more robust and capable than trying to solo a project

Sometimes just having someone(s) do some PM work to manage funeral arrangements, life insurance arrangements, closing down accounts, manage beneficiary distributions etc can be very helpful if motivation/discipline is hard or stressful to come by

Food for thought: after my sister and dad passed I had tons of people ask me how I was doing / “please you can talk to me anytime” and I’d say “I’m good” even though I was plagued with burnout, depression, anxiety for a few years etc. I’m in a much better spot now, but what I’m getting at is there can be a problem of that it may be near impossible to actually know how the person is doing, especially if they’re the type of person who doesn’t like sharing emotions or being a burden on others. Not exactly sure what you can do to fix it, just pointing it out

https://archive.ph/r4Glj

Thanks for posting, but this (and all other links to this site) are unreadable due to ads that cover the text, so it doesn't really help with paywalled sites. Edit: Here's a screenshot for the curious: https://github.com/bachmeil/screenshots/blob/main/ads-over-t...

I don’t have this issue at all?

Not for me. Do you use an ad blocker?

Ah, that sucks. You might try:

Chrome + NoScript (default settings, with only google.com allowed to run scripts). Works on original and archive sites.

The old Kill Sticky wipes out the banner -

  javascript:(function()%7B(function () %7Bvar i%2C elements %3D document.querySelectorAll('body *')%3Bfor (i %3D 0%3B i < elements.length%3B i%2B%2B) %7Bif (getComputedStyle(elements%5Bi%5D).position %3D%3D%3D 'fixed') %7Belements%5Bi%5D.parentNode.removeChild(elements%5Bi%5D)%3B%7D%7D%7D)()%7D)()

I used to use Firefox with NoScript; haven't tried it on this.

I keep forgetting, most people are reading from mobile; I have no solution. I'm getting old...

On Android you can just install Firefox for mobile and install uBlock Origin as usual.

>If she does not understand or employ traditional feminine wiles that, offensive though it may be to admit, are necessary to getting along in a patriarchy?

Is this really true in this day and age?

Yes. Well perhaps not feminine wiles, but a greater degree of determination than men need.

Even here in Norway, which is a bastion of egalitarianism, men still have life time earnings substantially in excess of women and are a larger proportion of industrial workers, politicians, and board members.

In other societies that are less advanced in this respect I can easily imagine that the occasional wielding of a 'feminine wile' might count for something.

Of course. No one defies gender roles in the modern West. There are no large, media/ruling class celebrated subcultures of people who do not follow gender roles. All conform.

To be less tongue in cheek, no it’s not true. Life is harder if you’re weird but plenty of people are abnormal to the level of dysfunction and severe negative consequences and they get by. Plenty of others conform to gender roles and have a shit time anyway.

It’s a lot easier to make it as a member of the journalist class if you say what the author did about the patriarchy, of course.

The idea that we live in a patriarchy is laughable to me, but as a woman myself, I'd say that yes, knowing how to interact with men as a woman — "feminine wiles" — is very useful. If not indispensable.

I stopped reading at the 3rd paragraph. Not that the article was bad. But that it took me to a difficult place[1], where I had to consider the "what if" scenarios that I dreaded.

It sounds like this happened around the same time as our experience. What I recall of my experience, I went into sort of a relentlessly optimistic support guy. Suppressing everything I was thinking and worrying about, so as to take care of my family.

Our outcome was different. My wife of 31+ years is sitting a mere 1 meter from me on our couch, watching a TV show with our 22 year old daughter (12 at the time of the event). She is officially a survivor.

I've commented to my therapist that there really doesn't seem to be much support for families/spouses for survivors. This was a tremendously traumatic experience, that I only started addressing last year. Vocalizing your fears is hard, after you've buried them for so long to support your family.

I'm sure this is a good article. I just can't read beyond where I went. Likewise, the last episode of "How I met your mother" hit me very hard (1 scene, barely 30 seconds). I've never been able to complete that.

Its not that I can't watch/read these things, its that it resonates uncomfortably with my own experiences, and I don't wish to experience that discomfort if at all possible.

[1] https://blog.scalability.org/2011/11/ot-it-really-focuses-yo...

Oof I wasn't ready for that one. Great writing.

Wow that was a heartbreaking read, especially 1 month into being a parent.

Not sure why this is on HN, but this is a gut punch and I think it is something worth spending the time to read.

I think it's on HN because one of us thought this article deserved our time.

And, after reading it, I agree. You summarized it right: a gut punch, but it felt damn good.

The author's wikipedia page:

https://en.wikipedia.org/wiki/Charles_Bock

One thing they never tell you is just how much stuff a person leaves behind - especially things of sentimental value.

It's unfortunate, but we are all going to die much sooner than we want to.

Our son is four. I don't think I could make it through that speech.

I would search every cloud.

Reply on news.ycombinator.com