4 ms·
10 years ago I was diagnosed with a progressive neurological condition. I knew that it would put me in a wheelchair, take my ability to type, strip one by one e
by sago 8y ago
10 years ago I was diagnosed with a progressive neurological condition. I knew that it would put me in a wheelchair, take my ability to type, strip one by one every physical function, and eventually, but definitely not quickly, kill me.
I knew I couldn't go through that. So I decided I would take my life at the appropriate time. I still hold to that decision. I did the planning, I have the means.
But something happened that I didn't expect. As I have got worse, it's never quite felt the right time. I am much worse now than I thought I could ever stand to be, for a long time I have been reconciled to death, but life is still worth living enough to live.
I wonder if I will ever take that step. I absolutely reserve the right to. But I am constantly surprised at the value of my own life, even stuck essentially in two rooms, and requiring constant care.
The very black-and-white, all-or-nothing, I know how it's going to be 100%, attitude in this post struck me as naive. I strongly believe that it's his life and it should be his choice. But it did feel naive to me.
- narak 8y agoRead your profile, would be interested in links to the books you've authored.
- zerr 8y agoNot OP. I've enjoyed "Artificial Intelligence for Games" by Ian Millington. One of the best books in this subject I'd say. Thank you Ian!
- sago 8y agoThank you. One of my last longer writing projects last year was to update this and author a new chapter on procedural content generation for the third edition. Which is due out at the end of the month. I think they were trying to get it out by GDC, but it slipped a couple of weeks. The biggest problem with the book I think, has been that I have been unable to program for a while. So I was glad to be able to work with the publisher on a third edition, to solve some of the bitrot problems.
- zerr 8y agoWow, definitely looking forward to the 3rd edition!
- robertAngst 8y agoHow do you spend time? productive?
- lm28469 8y agoA guy in a wheelchair talks about considering ending his life due to a debilitating condition. First question asked to him on HN is about productivity. Never change hn, never change.
- andrepd 8y agoThe other three replies offer only sympathy, while this one was down-voted. So please knock off the "never change hn" because this is no hivemind.
- sago 8y agoI up-voted this, though depending on what you meant by 'productive', I can see why it would be insensitive. After I retired I wanted to write a novel. I did that with voice recognition. I did some consulting via Skype. I wrote a chapter for a textbook. As the fatigue made long form writing more difficult, I wrote more short stories, and now poetry. My goal, such as it is, is to complete another collection (I wrote one years ago). I get an hour or two a day of reasonable clarity. Some days, though, I spend it farting around on the internet (ohai!).
- robertAngst 8y agoThis was very insightful and only wish the best. Thank you for sharing.
- iguy 8y agoThanks for the story. I was told (although have not checked) that many euthanasia cases work a bit like this. Doing the planning is important, but most people don't go through with it. Nevertheless their lives are improved by knowing that they have a plan B, by having agency.
- johnisgood 8y agoI have been diagnosed with multiple sclerosis 2-3 years ago. I have been contemplating a lot about what I am going to do, and if I would be able to do it when and if it comes to that. I do not wish to rot away on some hospital bed waiting for my life to end. I might just end up overdosing on morphine if it ever comes to that. Hopefully not. I try to maintain optimism, I hope that we will be able to significantly slow down demyelination, stop it, or even reverse it. We will see...
- itchyouch 8y agoCheck out dr terry wahls. She was diagnosed with ms and has been able get from wheel chair to walking through lifestyle interventions.
- HQn5y8skKzuPp8D 8y ago> I hope that we will be able to significantly slow down demyelination Recent drugs can already significantly slow down demyelinination but these stronger drugs come with stronger side effects. And that's why I suppose you are doing a MRI follow-up to check the activity of disease: so that doctors know which drugs they should prescribe you. Today immuno-neurology research is a hot field in which converge both research for neuro-degenerative diseases and research for various forms of cancer. You probably already know that most MS pts have an almost normal life expectancy. I think it's quite probable that in the next decades the disease will become stoppable for the majority of patients. (just think of tech and medicine 30 years ago...)
- ddingus 8y agoThat is amazing, and ai totally relate to it being unexpected. Live well. You seem to have high strength of character. Thanks for sharing this.
- itchyouch 8y agoIf you have MS, should look at Dr Terry Wahls Ted talk and books. Went from wheelchair to walking in 6 months and with clinical trials underway for more legitimate data.
- seattle_spring 8y agoIf you haven't cured yourself with a magic diet with no reproducible studies, maybe don't marginalize the very real pain chronic sufferers are experiencing and their many attempts to get better with a suggestion that they should just follow a fad diet.
- maxxxxx 8y agoTotally agree. It's really easy to categorically say "If X happens I will do Y for sure" until things really happen and then suddenly there is much more nuance that makes decisions really hard. A while ago someone I knew broke her neck and was paralyzed neck down, couldn't talk, couldn't eat. Before this I was always thinking I wouldn't want to live that way but now I am not so sure anymore. I think you did the right thing developing a plan for taking your life. Now you are in control of your life instead of being caught in the medical machine like a lot of other people.
- criddell 8y agoMy grandmother lived in a home for the last 8 years of her life. At first I felt pretty bad about it because there's no way I would want to be stuck in there. It smelled bad, the food looked gross, and there didn't seem to be anything to do. My grandmother loved it. Until that time she had been living in her own home and I guess she was pretty lonely. In the retirement / nursing home, she made a lot of friends and was far busier than she was when living alone. There was a routine she had to follow and that structure was great for her. She sang in a choir, played a lot of cards, found a boyfriend, got her hair done every other week, and could go on a field trip to the mall or a Walmart or a diner a couple times a week. I only saw the negatives and I think my grandmother only saw the positives.
- NeedMoreTea 8y agoThat strikes me as the most pragmatic, and humane option. For me, the option itself is the most important, and I think it should be available for all. If, like when my father was dying slowly of cancer, there comes a point when it is clearly no fun any more, I want an option to exit. If I'm still finding life worth living maybe I'll never actually hit the exit button and go quietly in my sleep.
- RickJWagner 8y agoGood for you! I hope you continue to enjoy a good quality of life, and please remember all the inspiration you bring to others around you.