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Want the freedom to be able to die
(lemm.ee)
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this post was submitted on 18 Oct 2024
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Off My Chest
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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.
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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.