Yesterday I finally posted to my friends on Facebook that my brain function has gotten so bad I can’t finish a coherent article anymore and can’t find any other work that I can do otherwise, either.
The people who responded were kind, generally offering prayers or positive thoughts, though many said they were sorry to hear about it and didn’t know what else to say. I get that. There’s not much you can say in a situation like mine.
The surprising part was that so many people said I was inspiring and had always been so creative in finding ways to overcome hardship and likely could do so again. Some even said I should write a memoir about what I’ve been through, but right now (especially because I can’t get the recommended treatment because I don’t have $20K) I can’t even make my brain function that way. I would have no idea how to organize a book. That’s kinda the whole point of what I’ve lost: I once had so much potential and I didn’t make the most of it before it was too late. To me that’s tragic, not inspiring.
On the one hand, I feel like it’s an issue of what other choice do I have? I wake up most days with a heaviness in my chest, a dread for what’s ahead. I truly don’t remember the last time I woke up and felt joy. Sometimes I can cultivate something similar to joy once I’ve been awake a while, but it’s usually very fleeting. Life is just hard for me and has been for most of my life, even despite the things I have to be thankful for.
Yet on the other hand (or is this adding more fingers to the first hand?), I wonder why so many people find me inspiring. I’m a little flattered, I guess, but mostly just confused by it. I honestly can’t tell what about me is inspiring to anyone. I’m perpetually working to change my extremely negative self-talk and that change is very slow. But mostly I just think that people find me boring and annoying.
When I was young, I knew some people didn’t like me but I didn’t usually care too much. But then I met a friend who was part of my life for almost two decades who made me feel unlikable, boring, annoying, ugly. And I still haven’t been able to shake off that influence. It really fucked with my head and altered my self-perception for the worse.
Since I have this negative self-perception as a filter, I can’t possibly understand why anyone would find me inspiring. I just struggle a lot and endure a lot. I try not to complain. Most people, even my husband, have no idea how much physical pain I’m in on a daily basis. I experience momentary vision loss a few times a week and it scares me, but it always comes back after just a couple minutes. I don’t tell anyone when that happens either, because I don’t want to have my ability to drive taken away. (But if I felt it were to a degree that it was endangering others, I would tell someone. I’m not that stubborn.)
Rather than seeing myself as inspiring, I mostly just see myself as a cautionary tale. Do whatever you can while you still can. You never know when the ability will be taken from you. If you put things off until tomorrow, you may never get a chance.