I was 13 when I got a "mild" case of CFS and MCS. I was a gymnast with a shot at the Olympics. I was a singer and dancer, who was doing a 6 week singing tour across the west coast of the US, doing 1-2 concerts daily. Vivacious, outgoing, I had my whole life ahead of me.
I had one summer of remission at age 16. This allowed me to finally get caught up on my schoolwork for the first time in years, as I hadn't had the energy to concentrate. But that fall, I became sick again with various infections, and before I turned 17 I was mostly bedridden, in severe agony every day. Within 6 months I was fighting for my life, the only food i could eat was the stuff they put in feeding tubes, and my MCS meant I could barely breathe and was constantly on the brink of death.
I lived this way for YEARS on end. My mom was my primary caregiver, and our relationship was fairly fraught.
I tell you this because:
- When I was mostly bedridden and roombound, I still made lasting, deep friendships online.
- I took several years to do it, but at the age of 23 I finally graduated high school from self-taught schooling online, taking my time.
- I gradually got well enough to escape an abusive environment, living on the streets in a van.
- I met the love of my life.
I now live without symptoms most of the time, so long as I live carefully and do not overdo.
I am not yet well enough to be fully independent, but my boyfriend genuinely doesn't mind taking care of me. There is no resentment, no power imbalance, He does not think any less of me for it.
I am well enough to work a few odd jobs. This only started last year! I am so excited to gradually begin making enough to support myself. Very slowly. I keep living expenses very low, so that I do not need to earn as much to survive. Currently my boyfriend cannot work either, and yet we somehow make it through.
I've never been happier in my entire life than I am right now. I'm 27, nearly 28.
I know it can seem hopeless. I've been there. And I just want to say - YES - there is life while disabled. It is
different. But
different is still worth living.
I never got to be the athlete that I dreamed of. I don't have enough energy to sing enough to train my voice. Dancing is a rare luxury I can't do enough to get good at.
BUT....
When I do my yoga-like, slow dancing stretches at my local community center, dozens of people stop and stare in awe at the performance art I unwittingly create. I've actually become known for it in my local community. My boyfriend loves it when I sing, even when my voice isn't warmed up. And when we hit the dance floor together - I need him to hang onto me at all times for balance - we've created our own version of dancing that's the goofiest, sexiest, weirdest fun thing ever, that makes us and everyone around us have such a good time you'd think there's nothing bad in the world at all.
(Our second date ever I collapsed on the dance floor - oops. Poor guy carried me out and stayed with me all night and the next day, canceling work to care for me. He knew what he was getting into!)
I'm just sayin'. Yes, it's worth living. No, it won't be what you imagined. But that's just because you never imagined all that good stuff could happen to folks who are disabled. Can it? Yup.