Posting from a throwaway. [TW contains a little bit of internalised ableism and touches on Suicide and Firearms]
I’m heavily disabled. Like can’t move or get out of bed type disabled. And sometimes lose the ability to communicate.
Anyways most of the time I’m happy to be alive. But the fact I couldn’t kill myself if I wanted to really makes me feel trapped. I take medicines given in a daily pill box, I’m IV fed water and food, and I can’t get out of my bed. There is literally no way for me to end it.
All I’m doing is laying here draining my family’s resources. I love learning, and most of the time that’s enough. But when the pain get’s really bad, or my disease starts to progress or worsen. I just want it to end. And not even having that option, or being able to communicate it, is terrifying. Like I could be stuck in an endless cycle of pain and suffering and not be able to let go even if I wanted it.
At the same time, in better periods I’m glad I’m alive. And if I did have a gun on my bedside table, I can remember more than a dozen moments I’d already have ended it. It’s like I only need to feel suicidal 1% of the time for my life to end if I have access to a weapon, so the other 99% feels glad that I don’t.
I don’t know what I want from this post. But I guess this is my message in a bottle. I needed to get this out there and throw it away.
If you’re here, thanks for reading. I hope your day went well. Peace.
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I know i can’t own a gun because there are times that my sadness or rage would take over. As a walkie-talkie, i don’t have anything near the struggles that you have. I can see how you would feel trapped or not in control of your own life. I work with school kids with disabilities and i found your post touching. I always wonder how my kids and their families do after they graduate. Do you mind if i ask a few questions? Is your disability congenital or acquired? Did you go through public school? Are there things that other people wanted for you when you were young (or now) that were not aligned with what you wanted?
Aquired. I was actually a math student at one of the top 5 universuties in the world before I got struck down. I was engaged too. I had everything, and then nothing… I’ve been pretty good at adapting to the new life. After a couple months of feeling sad I was able to make the best of it. But sometimes the physical pain and fact that there is almost no chance I ever get better hits hard.
I did go to public school though but skipped a couple years ahah.
As someone with an aquired disability, The thing that hurt the most about others is them being overly positive. Like them saying I’ll get better when I’m almost certain not too, or them acting like my disability is a phase that will pass. I imagine they did it of good faith. But to me it’s denying who I am as a person, my struggles, and my pain, acting like it doesn’t really exist. It almost felt like a coping mechanism more for them than for me.
Thanks for your answer by the way.
Thank you for sharing your experience. I think you have a story to tell that people would be interested in- something that could help people in similar situations feel seen or could help caregivers and families understand. In school we read a book called Bed Number 10 about a patient with Guillain Barre and the struggle of being unable to communicate needs to caregivers. It’s a reminder that the things we may not think of - a sheet wrinkle or a window shade - can be incredibly important to people with limited mobility or communication. Good book, but it’s written in the 80s and so much in healthcare is different now.
I can see how it would be incredibly frustrating to deal with such a huge change while people around you are essentially denying it.
Yeah when your situation undeniably implies a reality that’s darker and shittier than they have the balls to acknowledge, they wince instead of seeing it and do something reflexive.
Maybe the kindest interpretation is they saw as much of your situation as they had the strength for, and then they had to push it away.
❤️❤️
For what it’s worth, Thich Nhat Hahn has some lectures on YouTube and if all you did for the next 50 years was practice what he teaches, you wouldn’t run out of stuff to do. Good option to know about, at least.
Thank you for sharing.
My partner is disabled (not as impacting as you but rather impacting still), and I was really annoyed at relatives who tried to offer hope and advice when her symptoms started. Hell is paved with good intentions, so to say.
A few questions, if you don’t mind me asking : you mentioned you were a math student, did you have a preference for a particular field ? Are you still learning maths, or did you switch to other things ?
Are you able to / do you listen to music ? Any particular preference ? Same question for movies and TV shows. Any other form of entertainment you are able to experience and enjoy, when your condition permits ?
I’m deaf and mute. I was focusing on Manifold Learning but due to neurocognitive deficits I’m unable to continue with math. I’m able to use my phone and communicate sometimes but most of the time I’m only able to be alone with my thoughts. But I do enjoy watching some repetitive shows when my condition permits (animated sitcoms tend to be the easiest to follow with my cognitive problems).
Though what I spend most of the time I’m able to go on my phone is endlessly scrolling through wikipedia and learning new things, it’s what really excites me.
Anything interesting you’ve randomly learnt recently that you’d like to share ?
Due to my memory problems I don’t remember most of what I read for long. But I really enjoyed a deep dive into learning about purpoises the other day. If you’re ever bored, or want to get through a commute, reading random wikipedia pages and seeing where the links take you is quite enjoyable in my opinion.
Once again, thank you for taking the time to share about your experience. I hope your deep dives take you to interesting places, friend.