Me & My Shadow

  

I don't remember a time when I didn't have Juvenile Rheumatoid Arthritis. Well, now they call it Juvenile Idiopathic Arthritis, but a rose by any other name is still a pain in the arse.

I have lived with RA for over four decades and there are times when I've thought about how even really bad criminals tend to get off for good behavior after spending that long in prison, but apparently, I’m a lifer. And most days, it isn't really prison. It's just life and thanks to the Biologics, I'm living it, enjoying every moment of every day.

When you’ve had RA - or any chronic illness, I guess - for decades, it becomes part of your life. It intertwines, growing in and around you, becoming you and you it. It is as much part of you as your shadow, is a different kind of shadow, one that at times demands entirely too many resources but without which I would not be me. Where does it stop and I begin?

A couple of days ago, I read an article about a 14-month-old girl who had just received cochlear implants and who could now hear for the first time in her life (that link will take you to a revised version of the first article, which appears to no longer be on the site). Not surprisingly, initially the loud noises made her cry, but she is little and adapted quickly. It made me wonder what would happen if someone came along and gave me…. Well, it’d be more complicated, I guess. Aside from waving a magic wand to take away the RA (and the fibro too, please), regeneration would be necessary to reverse damage. Or would they just take away the RA and leave the damage? In which case, I guess I have had a miracle, but moving back to the mythical day of my equivalent reversing of my disability…

I thought about it yesterday on my way out to get my wheelchair fixed and quickly, one after the other, a list of wishes developed. I’d find myself a horse and take up riding again, tramp about the Don Valley with my camera, go visit the Tinks and tell my sister and brother-in-law to get lost for a week and then there's that road trip I've always wanted to take, the one where I drive south through the States, wherever my whims take me for as long as I want, turn right somewhere around Louisiana and meander my way across until I hit the Pacific Ocean. But after engaging in some wishful thinking for a while, a deeper question slowly emerged.

Would I still be me?

I have said before that if I were offered to do it all over again, I don't think I would choose a life without RA. It has shaped who I am and I like who I am. I love my life, the people who have become part of my world along the way and although I'm sure I would find happiness in this other parallel reality, I like this life more or less just the way it is, possessed wheelchair and all.

Let's assume that I wasn't starting over, but somehow magically healed (a body transplant?), So I'd still be this person who has been shaped through my experiences, still have the life I have now with the same people in it, but would I be able to adapt? I'd have to learn to use my body in a completely different way, would interact with the world in a way that would be completely alien to me. I'm pretty sure I could get over not being in pain - my recent experience with ultrasound indicates that it would take some getting used to, but in the long run, it wouldn’t be a hardship to be free from pain. But who would I be if I didn't have pain anymore? Who would I become? I alternate between jumping all over it because it would give me a chance to write as much as I want without having to stop after an hour or so, I' d have range again, walking much further than I can now… Wait. I wouldn't be using wheelchair, would I? I would be actually walking, instead of the concept of walking. What would that be like? I have a couple of times seen the world from someone else's height and it’s dizzying. Everything looks different and I'm pretty sure I’d be disoriented for a very long time.

And we're back to the nitty-gritty of it, but I'm not sure you can separate it into a larger concept instead of the nitty-gritty. Because my RA, my disability have been part of me so long that they are part of everything, the big and the small. They are most definitely part of what I am, but are they part of who I am, as well?

Would I still be me without them? I have no idea.