This story is in the same vein as that of the CloudFlare cofounder[1] who suffers from a rare neurodegenerative disease and has had his life pretty much taken from him at far too young an age.
This quote in particular gnaws at me: "We had promised each other that in a few years, when the girls headed off to college, we’d work less and travel more. Amy didn’t deserve to lose those dreams, or her companion, just as we were on the brink." I, presumably like many others here, have spent a lot of time on my career, perhaps to the detriment of other aspects of my life. Is it worth it? That seems like an impossible question to answer.
It is common to have a rare disease: 7-8% of the general population has some sort of a condition that is classifiable as a rare disease
I personally have 2, both of which affect my peripheral nervous system.
Getting diagnosed is basically like having a bomb dropped on you. Nothing can prepare you for it, and it takes a long time to heal from the news, if you ever do.
The vast majority of rare diseases have no government health regulatory system approved treatment. I believe 95% do not.
Treatment is often for symptom relief, and typically modification of the disease process itself is not possible. However, in some cases, drugs can be repurposed.
My attitude to stories like this is simply that you can't live under the assumption that you'll die early from some freak cause. It would be a non-functional state of life, sacrificing all long term objectives.
At the end of the day all any of us can do is play the odds, and sometimes while playing X-Com that 99% chance-to-hit point blank shot by your most experienced soldier with the best equipment simply misses.
Such a difficult question. My thoughts: we're all trying to strike a balance between work and family. Whatever balance you manage, be present wherever you are. For whatever time you are with your family put away your phone, and be present mentally. Your children will be thrilled if they get 30 minutes a day of you uninterrupted even if you are working much of the rest of the time.
I remember this article when it first came out. It was like a gut punch. Things like this are so scary and you can do everything right and still die early. When I read he died a few months later it was just horrible to me. I still think about this story often and it scared me to my core that I could have undiagnosed cancer and be dead in months.
Same. Why I am against the idea of ever having a family unless I have a fuck you pile of cash. At least that way, you won't have many regrets and you should be able to hire someone to take care of things that you won't live to. It won't be 100% same as when you were there but at least, it won't be the worst.
Death isn't as scary as the idea of leaving someone dependent on you behind. They might become dysfunctional without you.
So it was weird when my primary care doctor put me on a cocktail of pain killers, nerve blockers, and cortisone shots. I even tried acupuncture. But as my back began to improve in late June, I started to feel off. Sick to my stomach. Weak. Couldn’t sleep. I lost more than 10 pounds. [...] My doctor said I was fit and healthy and that there was no need to run any blood tests. He wondered aloud if this was all in my head.
It never stops shocking me how different the American health care system is...
Do we just never hear the other side (because there's too many of them and they're too poor to get published)?
There's a lot of people who say their parents wished they "left a mark" or did something in this world besides enjoying living.
My uncle died of cancer, it took all of 8 months (he likely had it for a while by the time they found it). It was horrible for him.
By now, I have about 5 people I knew who just died suddenly or very fast, including one who killed themselves. Life is short and unfair, there's no time for negative emotions like hate, feeling sorry for yourself, regretting stuff imo. Just enjoy whatever life you have.
I didn't see the "(2017)" when reading this and wasn't aware of the news at the time, so at the end I wondered about how things concluded.
Unfortunately Matt passed in 2017 [1] [2] and the company reportedly acquired by Uber in 2019 [3] [4].
My take-away from this is to not waste the precious time we may or may not have, to not have regrets, to have my friends and family know how much they mean to me.
A side note: It's a shame that the record of his death by his company only exists through a web archive link. It feels like the passing of a person should be more permanently recorded. It's a single marker that says "this person existed and they mattered". Of course this means a lot to those who knew him directly, but it also means a lot to those in the future trying to understand their family history or the history of our society.
For example, the people who were killed during the witch trials - although their deaths were tragic, at least there is some recording of the injustice done against them [5].
I laughingly went into the cardiac clinic to have a routine angiogram that wouldn't find anything. I even made a play on my surname that I was going to have a "strangiogram".
A bit later, the doctors said "We're not sure if we'll let you go home or not."
I had plaques closing off my main cardiac artery just where it branches. If I got a full blockage there it would be curtains immediately, with no chance whatever.
Stents were no good, if they put a stent in one arm of the fork it would close off the other and vice-versa.
I was literally a walking time-bomb. They eventually said I could go home. Two weeks later I had a triple bypass.
Pancreatic cancer is almost always asymptomatic, until far too late for anything but palliative treatment. And it's extremely coagulogenic, so clots are often the initial symptom.
Is everyone going to think this - or should the next step in this situation be that every Doctor should recommend that you get a second or third opinion? Without processes in place, we will continue to make the same errors.
The Buddha recommended that both lay and monastic followers perform the following recollections on a daily basis:
1. I am sure to become old; I cannot avoid ageing.
2. I am sure to become ill; I cannot avoid illness.
3. I am sure to die; I cannot avoid death.
4. I must be separated and parted from all that is dear and beloved to me.
5. I am the owner of my actions, heir of my actions. Whatever actions I do, good or bad, of these I shall become the heir.
The first four recollections require no faith and can be perceived in the here and now.
I find that regularly contemplating the above recollections are helpful in reminding me of my own mortality.
They also prompt me to question my direction in life and what I'm working on. It's often easier to make frequent but smaller course corrections than really big changes.
With all that said, I still find myself falling into the illusion that I can control what happens in my life and that I'm building something permanent. We can certainly influence aspects of our lives, but at the end of the day it's all impermanent, beyond our absolute control, and will pass away.
One of my previous bosses and then my client for +10 years, have cancer and is very close to the end. He also spent his life in work and also have regrets. He was fit and healthy, at his peak in life and then have it all taken away. Cancer sucks do damn much..
Much like others I found the no blood test thing wild.
Personally I've just resorted to doing annual blood test in a 3rd world country. There the doctors will run whatever you like basically - it's paid at commercial (3rd world) rates so they don't give AF.
Ironically in a "european" healthcare system the doctors are much more reluctant given that they need to fairly allocate public funds.
My doctor ... wondered aloud if this was all in my head.
Just as a PSA: This is all too common with obscure conditions.
Before I finally got a proper diagsnosis, I spent months on antibiotics with doctors unsure what to do and when I expressed my concern with them having no answers and being unable to fix me that this could kill me, I was asked if I wanted to speak with a psychiatrist.
I wish medical doctors would be trained to never, ever dismiss anything as "all in your head."
On the other hand, there are people for whom it is in their head, but cost considerable (and scarce) medical resources having it investigated and treated. It's a balancing act.
I'm going to go out on a limb and request that people not post this sort of thing here. HNers, I believe, have a higher-than-average rate of anxiety and psychosomaticism (myself included). Articles like this that don't include any real hopeful message or interesting takeaway just cause pointless distress for many of us.
On the other hand, many people on HN just like most likely pretty much every human you meet needs to hear something like this in the end blurb:
> If I get a soapbox, here’s my short shtick: We are all so fragile. Each day is precious. And the most important parts of our lives are the relationships we invest in.
Carpe diem! Do something nice for your loved ones. Make friends with someone you dislike. Go be good to somebody who doesn't deserve it. Our time here is limited, there's little space to be petty.
On the contrary, articles like this remind me to not take life for granted.
Ever since I read about Lee Holloway at Cloudflare I try to be grateful for every day on this Earth. I am 30 and yet so many promising and beloved people have died before my own young age.
We will all die. I am lucky to still be here experiencing this life.
The article was brutal. I think Wired should have put a warning at the beginning of the article, instead of the very end, but; do you really think censoring yourself from all harsh reality and expecting "disney" endings for everything is wise? Should every article contain a hopeful message with mandatory rose colored glasses? Should survivorship bias echoing be enforced? Zealous positivity can prevent you from somber reflection, asking difficult questions, and growing as a person overall. I don't think its wise to dwell on negative realities like the information technology fueled Muslim concentration camps in China or the relative slave labor that manufactures your electronics and clothing or the cows and chickens that get brutally slaughtered so that you can eat meat and make necessary protein chains; but, hey, I enjoy my steak and my smartphone and just keep rolling baby! That's life.
As a child at one stage of my life I was terrified of dying, and every time I learned about a new way to die, I became certain I was in the process of dying in exactly that way.
Then as I learned more about science and statistics I realized that most early deaths are rare, and not only that but evolution guarantees they are rare, because we all descend from people who made it long enough to raise a family.
Of course rare doesn't mean impossible, and if you are truly sick see a doctor ASAP, but otherwise remember you're just an experimental branch on the great tree of Life and enjoy your time in the sun. We all have our time in the light, and we all return to the earth when that time is up.
If you or anyone else want to talk, email is in the profile.
On anxious thoughts, I find rationalising them is a better way to cope than trying to distract. Write them down somewhere and go through each labelling the possibility.
I couldn't disagree more. The idea of denying the HN community an opportunity to read a touching and deeply personal story—simply because its ending isn't palatable to you—is incredibly selfish.
[+] [-] brianyu8|5 years ago|reply
This quote in particular gnaws at me: "We had promised each other that in a few years, when the girls headed off to college, we’d work less and travel more. Amy didn’t deserve to lose those dreams, or her companion, just as we were on the brink." I, presumably like many others here, have spent a lot of time on my career, perhaps to the detriment of other aspects of my life. Is it worth it? That seems like an impossible question to answer.
[1]: https://www.wired.com/story/lee-holloway-devastating-decline...
[+] [-] disabled|5 years ago|reply
I personally have 2, both of which affect my peripheral nervous system.
Getting diagnosed is basically like having a bomb dropped on you. Nothing can prepare you for it, and it takes a long time to heal from the news, if you ever do.
The vast majority of rare diseases have no government health regulatory system approved treatment. I believe 95% do not.
Treatment is often for symptom relief, and typically modification of the disease process itself is not possible. However, in some cases, drugs can be repurposed.
[+] [-] scottLobster|5 years ago|reply
At the end of the day all any of us can do is play the odds, and sometimes while playing X-Com that 99% chance-to-hit point blank shot by your most experienced soldier with the best equipment simply misses.
[+] [-] amoorthy|5 years ago|reply
[+] [-] remote_phone|5 years ago|reply
[+] [-] searchableguy|5 years ago|reply
Death isn't as scary as the idea of leaving someone dependent on you behind. They might become dysfunctional without you.
[+] [-] kleiba|5 years ago|reply
It never stops shocking me how different the American health care system is...
[+] [-] jotm|5 years ago|reply
[+] [-] jotm|5 years ago|reply
There's a lot of people who say their parents wished they "left a mark" or did something in this world besides enjoying living.
My uncle died of cancer, it took all of 8 months (he likely had it for a while by the time they found it). It was horrible for him.
By now, I have about 5 people I knew who just died suddenly or very fast, including one who killed themselves. Life is short and unfair, there's no time for negative emotions like hate, feeling sorry for yourself, regretting stuff imo. Just enjoy whatever life you have.
[+] [-] MiroF|5 years ago|reply
[+] [-] ohdearohdear|5 years ago|reply
[deleted]
[+] [-] bArray|5 years ago|reply
Unfortunately Matt passed in 2017 [1] [2] and the company reportedly acquired by Uber in 2019 [3] [4].
My take-away from this is to not waste the precious time we may or may not have, to not have regrets, to have my friends and family know how much they mean to me.
A side note: It's a shame that the record of his death by his company only exists through a web archive link. It feels like the passing of a person should be more permanently recorded. It's a single marker that says "this person existed and they mattered". Of course this means a lot to those who knew him directly, but it also means a lot to those in the future trying to understand their family history or the history of our society.
For example, the people who were killed during the witch trials - although their deaths were tragic, at least there is some recording of the injustice done against them [5].
[1] https://www.geekwire.com/2017/mighty-ai-co-founder-matt-benc...
[2] https://web.archive.org/web/20171020053826/https://mty.ai/bl...
[3] https://mty.ai/
[4] https://www.geekwire.com/2019/uber-acquires-seattle-startup-...
[5] http://www.witchtrials.co.uk/
[+] [-] simonblack|5 years ago|reply
A bit later, the doctors said "We're not sure if we'll let you go home or not."
I had plaques closing off my main cardiac artery just where it branches. If I got a full blockage there it would be curtains immediately, with no chance whatever.
Stents were no good, if they put a stent in one arm of the fork it would close off the other and vice-versa.
I was literally a walking time-bomb. They eventually said I could go home. Two weeks later I had a triple bypass.
[+] [-] knolax|5 years ago|reply
[+] [-] smnrchrds|5 years ago|reply
[+] [-] mirimir|5 years ago|reply
[+] [-] bitcoinmoney|5 years ago|reply
[+] [-] ravenstine|5 years ago|reply
I'm seeing a different doctor.
[+] [-] donclark|5 years ago|reply
[+] [-] BtdTom|5 years ago|reply
Death is certain.
The Buddha recommended that both lay and monastic followers perform the following recollections on a daily basis:
1. I am sure to become old; I cannot avoid ageing.
2. I am sure to become ill; I cannot avoid illness.
3. I am sure to die; I cannot avoid death.
4. I must be separated and parted from all that is dear and beloved to me.
5. I am the owner of my actions, heir of my actions. Whatever actions I do, good or bad, of these I shall become the heir.
The first four recollections require no faith and can be perceived in the here and now.
I find that regularly contemplating the above recollections are helpful in reminding me of my own mortality.
They also prompt me to question my direction in life and what I'm working on. It's often easier to make frequent but smaller course corrections than really big changes.
With all that said, I still find myself falling into the illusion that I can control what happens in my life and that I'm building something permanent. We can certainly influence aspects of our lives, but at the end of the day it's all impermanent, beyond our absolute control, and will pass away.
[+] [-] canucker2016|5 years ago|reply
A bit of web searching yields:
YouTube video from Matt's family and friends about Matt Bencke: https://www.youtube.com/watch?v=AbgVvCnvrAk
Matt's wife and friends post to https://www.facebook.com/groups/benckeupdates/ (most content viewable w/o login)
Here's a covid19-related post - https://www.facebook.com/groups/benckeupdates/permalink/6501...
One sad thing is that the domain registration for Matt's personal website has expired. So the web has recycled the website a couple of times.
Now the website content is NSFW. :(
[+] [-] tmikaeld|5 years ago|reply
[+] [-] Havoc|5 years ago|reply
Personally I've just resorted to doing annual blood test in a 3rd world country. There the doctors will run whatever you like basically - it's paid at commercial (3rd world) rates so they don't give AF.
Ironically in a "european" healthcare system the doctors are much more reluctant given that they need to fairly allocate public funds.
[+] [-] DoreenMichele|5 years ago|reply
Just as a PSA: This is all too common with obscure conditions.
Before I finally got a proper diagsnosis, I spent months on antibiotics with doctors unsure what to do and when I expressed my concern with them having no answers and being unable to fix me that this could kill me, I was asked if I wanted to speak with a psychiatrist.
I wish medical doctors would be trained to never, ever dismiss anything as "all in your head."
[+] [-] MiroF|5 years ago|reply
[+] [-] bubba1236|5 years ago|reply
[deleted]
[+] [-] _bxg1|5 years ago|reply
[+] [-] asveikau|5 years ago|reply
> If I get a soapbox, here’s my short shtick: We are all so fragile. Each day is precious. And the most important parts of our lives are the relationships we invest in.
Carpe diem! Do something nice for your loved ones. Make friends with someone you dislike. Go be good to somebody who doesn't deserve it. Our time here is limited, there's little space to be petty.
[+] [-] verylittlemeat|5 years ago|reply
Ever since I read about Lee Holloway at Cloudflare I try to be grateful for every day on this Earth. I am 30 and yet so many promising and beloved people have died before my own young age.
We will all die. I am lucky to still be here experiencing this life.
[+] [-] nicetryguy|5 years ago|reply
[+] [-] klipt|5 years ago|reply
Then as I learned more about science and statistics I realized that most early deaths are rare, and not only that but evolution guarantees they are rare, because we all descend from people who made it long enough to raise a family.
Of course rare doesn't mean impossible, and if you are truly sick see a doctor ASAP, but otherwise remember you're just an experimental branch on the great tree of Life and enjoy your time in the sun. We all have our time in the light, and we all return to the earth when that time is up.
[+] [-] ravenstine|5 years ago|reply
[+] [-] searchableguy|5 years ago|reply
On anxious thoughts, I find rationalising them is a better way to cope than trying to distract. Write them down somewhere and go through each labelling the possibility.
[+] [-] ingsoc79|5 years ago|reply
[+] [-] Aeolun|5 years ago|reply