From hacker to hospice in seven weeks

First, I'd like to say thank you for writing this. I'd also like to add a little for others who may be in a similar situation.

Just to set the background, I'm in my mid-40's, was a responsible adult, and had a house and family, and worked as a programmer for 15 years. I was fairly typical as a programmer -- a bit overfocused, had an excellent memory, strong reading skills, etc... I wouldn't say I was a great programmer, but I was a solid, competent programmer at the senior-ish/lead level.

Initially I was diagnosed with sleep apnea. Once I was on a CPAP machine I had periods where I'd sleep more-or-less normally, but I'd still go for periods or three to six months without normal sleep. This went on for three years or so. During periods of extreme fatigue my immune system would collapse and I'd get sick at the drop of a hat, and normally small things would make me really sick. Well, that was pertty horrible, but not too bad, really. I could get through it and, once the CPAP was set up correctly I'd eventually come back to normal after a few months.

I'm not really sure, but I think that sometime in that period I picked up a disease like chronic fatigue syndrome or mono or something that made it so that fatigue and confusion cause real trouble in my life. My memory is crap, and is simply gone most of the time. I have an extremely hard time getting focused and oriented. It's destroyed me financially, emotionaly, and caused a whole bunch of damage in my life. I'm just barely getting by and living in my van.

Sometime I'm better than others, but I go through these periods of extreme fatigue, where I mentally "fade out". My memory gets extremely bad and I forget things within seconds or minutes. I have trouble recognizing faces, names, etc... as well as just getting myself organized and functioning like an adult. There are periods where I come around and my brain starts working sort-of normally again, but it doesn't seem to last for very long.

I've seen seven or eight different doctors, ending three years ago when I lost my job and ran out of money. I didn't had any luck getting any of them to take my condition seriously. I'd tell them that something other than sleep apnea is going on, but they can't find anything, at least nothing obvious, so they don't believe anything is really happening, that it's "just psychological". But I know my self better -- for example I Know I had a college level reading ability in the sixth grade. Now I have trouble remembering the title of a book I read a week ago.

I'm solidly in the "darkest fears made manifest" stage of this thing. Part of me knows I'll survive this, that this will pass and that everyone deals with sickness, old age, and death. It has been (very) slowly getting better. I still have bad periods, but they aren't quite as often or as long, or as bad, as they were several years ago. Even still, when I'm in the middle of one of these periods of fatigue and confusion I'm convinced that it'll kill me.

So, and here's the real point of this, I'm still committed to being a force for good in the world. I'm there for my kids, regularly volunteer, and stay involved with helping other people. Like you say, mortality is the ticking timer that keeps you alive.

I worry that a victory over aging would be opening a pandora's box on humanity's progress on social change.

It is my personal opinion that a person's opinions of social norms, cultures, and traditions are largely fixed throughout one's lifetimes, and it is death (and birth!) that allows a society to shift its morals.

Of course you're right, but there's a misunderstanding there.

My point is people who went through the experience of having test results compatible with cancer and then discover it is just a false positive (which technically it's not even true, there's no cancer diagnosis before a biopsy, it just can't be excluded), well, these very people seem to speak out against screening, or adopting more extensive screening policies, because they had a "false positive", and "it's stressful".

I am pretty sure all the people whose lives were saved by screening find that pretty selfish.

I had the same experience. I was about the same age when I felt bad a lot. I had developed food allergies and suffered from nausea after I've eaten something along with a slight chest pain. It was going on for weeks before I went to my doctor and got diagnosed with a single gallstone and a lot of slug right away. In those weeks before, I was terrified that it could something more serious. But I told myself, that it was just the stress of the current project and the traveling (each week). After the diagnose, I went to the hospital three times when it was really worse, but denied further actions because of my project. The last time I went was on the last day of my project. I was in a really bad shape. I was operated a month later and today I am fine.

What I learned: See a doctor ASAP and do not delay treatment, even when working on one of the best projects.

As the joke goes:

Q: What do you call someone who finishes bottom of their class in medical school?

A: Doctor.