Falak Tak

You know I have this fear: That one day my SpA will be so bad I'll struggle to navigate an airport. I'll be one of the young people on a wheelchair, strapped to a buggy with old people, being shepherded by aircraft crew, while everyone else gets to browse the bookstore and choose breakfast dosa. Someone will manage my hand-luggage and I'll be ferried by a much healthier flight attendant my age. I'll be the first to board and the last to alight. Maybe someone I know will see me like this. And I'll smile lamely and wave from a wheelchair. Maybe I'll have to talk sitting. Or unstrap myself before standing up to talk hoping nobody had noticed.

Please understand that I laughed till my stomach hurt while writing this. Out of feverish nervousness or because it's really funny I don't know.

It's tough, having a chronic, incurable, progressive, degenerative disease. I've lost many things to it already, I don't even know them all. But here's a few.

I used to love to cycle -- 32km along a beach no sweat. 80 laps in 50 minutes no sweat. I could walk dozens of kilometers and only my footwear would be worse. And then one day I couldn't. I had to slow down on swimming, give up cycling completely. It would take me weeks to recover from half an hour of tennis. I couldn't jog. In yoga classes middle aged people were doing with ease what I was struggling with. I gave up wearing heels and smoking cigarettes. My body changed and I couldn't fit into any of my old clothes anymore. I couldn't work enough hours a week to hold down a job. With loss of work I lost my identity. I lost so much.

You would think that I'd have accepted my diagnosis in the seven years since, as I've been building a life back brick by brick. Finding work that can accommodate my new reality, and nourishes me, emotionally, intellectually, physically, and monetarily. Accept the things I can and can't do; focus on the former and let go of the latter.

But I have fought acceptance every way I possibly could. I have not accepted, not accepted, not accepted. My body is unhappy with me, I'm deeply unhappy with my body. And I've really struggled to understand this. Why can't I accept this disease, such a central, definitive part of me? It's a force that is me and shapes me, what's keeping me from coming to terms it?

I think I've broken new ground on this. This is a new idea, so bear with me while I ferment it: It's been hard for me to accept that I am in some way inherently disadvantaged. That my body has limitations that others' don't have. That my starting point is a little bit behind everyone else's. That a body like mine is noone's dream.

This is a tough one for someone like me.

Here's a song from me to my spondylarthritis: https://www.youtube.com/watch?v=vr8RaNuWjWc

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