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.


Allison said…
I have always believed that who we is, to a very large degree, the result of our experiences. Who we are is shaped by the events in our past and how we chose to respond to them.  Every event, every choice, every moment lived further develops who we are as a person.  We use our pasts as reference material for the future.

While I haven't lived with my disability nearly so long as you with yours, I know I would not be the same person I am today if I had lived the past years without chronic pain.  A similar person, sure.  I would still love chocolate, still hate rap music, still be a daydreamer... but I'd like to think that I have learned something from what I have experienced and do experience and certainly HOPE that I have grown as an individual as a result.  I'm sure I would have grown as a result of whatever experiences would have come my way in place of the ones I have had, but, as they would not have been these experiences, I would not have grown in the same ways.
Gaina said…
I had to smile at the bit about seeing the world from another person's height and I remember watching a video made by someone who's 6'6" and I actually had to turn it off because it made me quite dizzy! :)

Personally I'd give anything not be disabled.  I hate, hate, hate it.

And you know what? I think accepting and vocalizing just how much I hate it and how strenuously I try to divorce myself from my body might be the begining of a process that gives me a healthier atittude about it.

And that my dear is something I would never have admitted had you not written this blog, so thank you xx
Crafty Cripple said…
Of course you would still be you if you were no longer disabled. You might be different if you had never experienced it, but you can't take away who you are now. I don't think you can differentiate between who you will become if you are cured or who you will become if you remain unchanged. No one can predict how events change us. Whatever state of health you have each choice you make and what happens as a result of that choice changes who you are. You can only accept who you are now and that you will probably change in the future.
Jocelyn said…
I, too, had to laugh at the height comment - my husband is 6'6", and I once was standing on a chair to see something in a crowd when it hit me - he sees like this all the time.  Weird.

This post has really made me think a lot about what I would be without the things in my life that have been most difficult and personality-shaping. I don't live with a chronic illness, but there is violence and alcholism in my family background, and every time I think I've dealt with what that means, it hits me that while I might be done with that stage of my life, the people who are alcoholics haven't finished with that stage, which means I'm not done either.  What would it mean if they suddenly weren't any more?  Given that i am who I am because of that, would I be able to be different? Would I want to be?
Cindy B. said…
Not quite on topic but a bit. I remember reading an Anne of Green Gables book many years ago and somewhere in one of them (I have most of the L.M. Montgomery books, included an autographed one I bought at a second hand store!) Anne says she wants to be completely free. Matthew comments something to the effect of "No man can be free who has a thousand ancestors".

We are a product of our heredity and our environment.
AlisonH said…
I find it difficult to tiptoe near that train of thought for fear of having grief wash over me because I will never see that thought through to reality. And yet... I stop, go, wait--look where I was two years ago, vs now. This is what I so much wanted to get to see back then.  It is enough.

Which makes it hard for me to be patient with people who don't like seeing me in a wheelchair the times I need to be. Goodness, we're alive, I want to tell them! Let's celebrate!
Anonymous said…
Interesting. For 20 years I was told I had moderate to severe asthma.  I watched what I ate, stayed away from overly scented shops, watched how I exercised, Now it turns out I was having anxiety attacks that are being controlled quite nicely by the proper meds. So am I a former asthmatic? An overly anxious person? I still find myself reacting to strong perfumes by turning away. I guess what shapes up stays with us.
Trevor said…
You'd still be you.  A body transplant wouldn't change the past.  But it would seriously change the future.
I sometimes wonder what would happen if my depression ever went away.  If I actually found meds that worked, or if I tried ECT, or even the new brain pacemaker.
And the thought scares me, to be honest.  I wouldn't have the slightest idea what to do with myself.  And then I figure my lack of depression would make me depressed, since then I'd dwell on all the missed opportunities of the past.  That's probably my depression talking.
See?  I can't even imagine my life without it.
fridawrites said…
I get panicky when I think of being "nondisbled" or walking again--I guess that means I really am "wheelchair dependent." The problem is that I fear not having the wheelchair when I need it--even though when I do (sometimes) walk, it's still here.  The truth is, I really do need it most of the time and it's difficult to conceive of otherwise, even though I would gladly be pain free!