The Day I Found Out My Life Was Hanging by a Thread (2017)
wired.com
wired.com
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...
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.
If your long-term objectives mean sacrificing (or delaying) happiness in the now, then I think you're doing the wrong thing.
It's all well and good to have long-term objectives, and we all hope we beat our life expectancy numbers, but you have to make every effort to be happy now, and not wait for some distant and uncertain future that may or may not become reality.
Yes, exactly.
Happiness now (because now is guaranteed) and (hopefully) happiness later too.
But whatever you do, don't put off happiness now.
Why put money into my 401k that I can't touch without penalty for 40 years when I could enjoy it now?
Being content and at peace with oneself in the moment is possible, and should be striven for. But for my part I'd have a hard time being content with myself if I wasn't striving for better for both myself and my family.
In my experience the only lasting satisfaction in life comes from discharging meaningful responsibilities, that requires some sacrifice of momentary happiness. Happiness is great when it's around but has no staying power, and too many people get sucked into miserable hedonism while trying to turn it into a constant.
> Today I sacrificed alcohol I would have enjoyed
It does not mean you have sacrificed happiness. You can (I hope) be happy without drinking.
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.
Death isn't as scary as the idea of leaving someone dependent on you behind. They might become dysfunctional without you.
I think my wife could take 8 years of Silicon Valley salary and retire off it in a lower cost of living area, although you're right that it wouldn't be a luxurious monetary worry-free existence..
It never stops shocking me how different the American health care system is...
"Americans are prescribed six times more opioids per capita than citizens in France, despite nationalized medicine in France allowing for easier access to healthcare and more healthcare visits per capita"
[1] https://www.dentalcare.com/en-us/professional-education/ce-c...
Shit, I had my wisdom teeth taken out days ago and the dentist was apprehensive to give me anything stronger than ibuprofen and paracetamol.
Unfortunately, I think you're mistaken.
Other times, my primary doctor always insists on doing blood tests before anything else. The only time I’ve been to him and been prescribed something before getting a blood test was when I went in for a muscle sprain, and even then the prescription was for some pretty mild muscle relaxers. I’ve also had the pleasure of experiencing kidney stones, and even when in the ER for that the doctors were extremely hesitant to give me anything stronger than ibuprofen until they did multiple blood tests and imaging to confirm without a doubt that the opiates were necessary.
I know statistics say otherwise, but I too am always surprised to hear stories about American doctors handing out opiates like candy.
Australia also had, or more likely has quite the crisis too. This is not at all specific to the United States though, I use it as an example as it's demonstratively worse.
In the last few years in Australia, opiates in it's over-the-counter (non-MD prescribed) forms have become controlled and are no longer available over the counter.
https://www.addictioncenter.com/addiction/addiction-in-austr...
https://www1.racgp.org.au/newsgp/clinical/australia-s-overdo...
Specifically regarding codeine:
https://www1.racgp.org.au/newsgp/clinical/here-s-what-happen...
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.
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-...
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.
I gather that it does take several years to go from early cancer cells to a tumor that's visible by MRI. But once there's a visible tumor, progression is much faster. And by the time you're clotting up and experiencing GI symptoms, you already have multiple metastases.
But there's no specific blood test, as far as I know. So basically you'd need an annual MRI scan, I suspect. I guess that'd cost too much. Or maybe damage from the x-ray exposures would overall increase risk.
False positives and the medical interventions that result aren't without risk.
Some cancers are just a death sentence. They start out virulent and spread quickly. And are immune to treatment. Detecting them early buys you nothing.
Flip side is some cancers progress slowly. Screening tends to catch the slow indolent cancers and miss the nasty ones. But because they progress slowly catching them early may provide not much benefit.
I'm seeing a different doctor.
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.
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. :(
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.
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."
In my experience and from everything I have read, the latter is far too common. It is much more common than the former.
I guess we'll just agree to disagree.
Here is just one such article:
https://www.oprahmag.com/life/health/a23100351/racial-bias-i...
I'm a woman and was called a hypochondriac until I got the right diagnosis at age 35. I'm skeptical that hypochondria is as common as people seem to think. I think people with real problems that aren't easily identified and being dismissed is probably far more common that actual psychosomatic illness. Probably somatopsychic illness is the real explanation in many of those cases.
> 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.
Looking back, I didn't even know what it meant until I lost my Mum a year ago at age 67 to cancer.
Life is damn short, and the most important thing you can do is have happiness right now.
But I am sorry to hear about the toll on mental health.
Not everyone thinks or responds the same and it is good to be conscious of that.
When I first joined, I was extremely ill and I turned off Show Dead because it just upset the hell out of me to see dead comments and dead articles. And I knew it was because I was so very sick and that made me emotionally fragile.
As I got healthier, that stopped bothering me and I turned on Show Dead because it's additional information and it's useful for knowing what is going on here.
I'm prone to nitpicking titles and I don't have any problem with people nitpicking titles because they feel the title didn't adequately signal that is wasn't really the kind of content they come here for. But I think it's overkill to ask people to not submit this kind of content.
I'm sorry but I think that is deserving of a more explicit content warning, and I don't see what that would cost you or others.
But the micro targeting facilitated via big data on social media, which plays in to our hopes and fears, desensitizes us.
I have 2 rare diseases myself, so I am pretty numb to articles like these, which is terrible, in and of itself.
I'm prone to nitpicking titles and I don't have any problem with people nitpicking titles because they feel the title didn't adequately signal that is wasn't really the kind of content they come here for. But I think it's overkill to ask people to not submit this kind of content.
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.
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.
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.
Well said. This advice is something I try to follow more as I get older.
Dwelling on negative realities is a bit more challenging especially with the current events.
It is. The numbers are staggering and our federal mismanagement of it is horrifying. In response, I have cast myself into a dev hole, am building a large-scale dream project, and i am very thankful to have the extra time.
This one is solvable - you can either just don't eat meat (plenty of people don't eat meat and they seem to do fine) or eeat meat from animals which were treated humanely.
No matter how grounded one's perspective is, each person has a finite amount of emotional energy to spend at a given time. This is a universal truth. Articles like this one can trash one's energy reserves - causing distress - without introducing any meaningful new information or perspective whatsoever. It's simply a bad cost/benefit ratio. I didn't learn any new hard truths by reading it, and I don't need your assistance to consider all of the bad things in the world, thank you very much. What I have trouble with is ceasing to do that even for a brief moment.
Don't preach at someone you don't have the faintest understanding of.