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by boxfire
1004 days ago
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Damn. One of the most powerful experiences of my life was working for someone with ALS. They could only communicate via moving and blinking their eyes slightly as I cued them. This person pivoted their career and was actively researching the disease locking them into their brain. One day they played a trick on me (I was basically a human auto complete as I took some graduate courses in their field and I was able to help finish the proposal they were writing). They made a joke in the word document. It made me laugh, and as I was looking in their eye I could see the joy that made. I cried so much that night. It really really gets to me. Every time I saw a new eye tracker device or otherwise I would email their spouse. I fuckin hate that disease, but I'm amazed at the human spirit I've seen it reveal. |
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I remember one specific patient that was a child and his parents were going to extreme lengths to have him live like a normal kid. I forget the specific disease but for the last few years of his life he had no functioning nervous system and was kept alive by machines until the parents could bring themselves to let him go.
I think about these situations a lot and yeah -- it brings out a range of strong emotions.