Barely an adult (M20), and I’ve been sick since around 12. I got an official diagnosis for what is *actually* happening in Jan, after years of guesses from doctors, and unfortunately there is no cure. I’m trying to start new treatments, but I have quickly become housebound and bedbound a majority of the time.
I was an artist, and art was my passion- pretty much anything creative I’d do. I’m now in too much pain/fatigue to do almost any art. I’ve somewhat lost my passion for life, as I have to spend every day in my bed, resting.
Yes, I’m in therapy (2x weekly), and I have a very strong want to live- I’m newly engaged and much more- but I’m struggling to grasp how I’m going to live the rest of my life in this amount of pain.
I need something that can kick me into a new perspective on life, and can (hopefully) give me a purpose when I’ve been dwindled down to doing almost nothing every day. I miss having enough energy to be passionate.
Any recommendations are highly appreciated. I can explain more about my illnesses if it helps the book recommendations.
thank you
by theendoftimexx
4 Comments
I’m sorry you are going through this and glad that you are getting help. The book I’m suggesting is not to help with suicidal ideation, but it’s a beautiful book that I think you may be able to relate to and gain pleasure from just reading it. [My Name Is Asher Lev by Chaim Potok](https://www.goodreads.com/book/show/11507.My_Name_Is_Asher_Lev). It’s a coming of age story of a young artist who is a New York ultra-orthodox Jew. His need to create art is in direct opposition to his religion. He finds a way to make it work though his relationships do not make it through unscathed. As I said, the writing is stunning but the key thing that makes me recommend it to you is that it delves deeply into the mind of an artist – what drives them even when it may not be the safest thing to pursue. I’m hoping it could help respark your passion.
I’m so sorry to hear about what you’re going through.
Have you read The Diving Bell and the Butterfly by Jean-Dominique Bauby? It’s a memoir written by a man who had been at the height of his success when he suffered a horrific stroke that left him with “Locked-In Syndrome”–fully cognizant and mentally aware, but unable to consciously move any part of his body except for blinking one eyelid.
He wrote the entire book letter-by-letter by blinking sequentially at an assistant with a letter-board.
It’s hard to imagine a more difficult or harrowing situation, and yet the book is so beautiful in his intense will to not only live but find beauty in life still, despite everything.
Into Thin Air (non fiction Mt Everest climb)
Tuesdays with Morrie
My Friends, Fredrik Backman
Before the Coffee Gets Cold
Midnight Library
Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha,
Touch The Future John Lee Clark
Both of these are essay collections that really helped reshape my own view of my disability