May 9, 2007

Reflections on a Weekend

I'd like to state at the beginning, I'm not sure where this post is going. I feel a need to write it though, so I guess I'll find out. You're welcome to come along for the ride with me.

I had a pretty eventful weekend. I'm now married legally, though we haven't had our huge family affair yet. We had a party afterwards that was fun, but completely overstimulating for both of us. I fear that on our actual wedding night we're going to sleep through the good part!

Yesterday, my sister and I went on a tour of various government offices to get our new-last-name paperwork done. The trip was an absolute adventure in disablism, but I'm sure I don't have to tell anyone who reads this blog that! Government buildings are built very accessible, but the government employees are experts at making them less so. By the time I left the SSA building, I was frustrated enough to come very close to letting it all out on this poor lady who rushed to hold the door open for me, giggle inanely, and say "You're pretty good in that thing." I just managed to hold my temper in check, which is a good thing. Its hardly her fault I had been glared at impatiently by state and federal government employees for trying to negotiate the physical obstacles they had placed all over the joint.

Later that day, I fell into a long pondering about my pain levels and functionality. I spent twelve and a half years in serious pain 24/7, and came to accept the constant pain hazing as a condition of my life. I accepted that I would always be in full tactical planning mode for the simplest of home activities, that I would always be a burden, and that I would never have a good quality of life. (But hey, during this time I also just denied that I was disabled!)

The last two years have completely turned this view on its ear. Over the last two years of wheelchair use, my pain levels of ratcheted down immensely. These days, two aleve a day means I experience only intermittent pain.
It is a strange feeling, one I'm still getting used to. I feel more healthy, able, and strong than ever, even though I now mentally categorize myself as a disabled person. I'm in the process of getting married, setting up a new life in another state, and helping raise my niece. I'm active, happy, and have an undeniably good quality of life.

In fact, I was feeling so well I began wondering if I still needed to use the wheelchair at all! So after much pondering, I spent about three and a half minutes hobbling around the house, pushing the 'chair in front of me so that if I fell I wouldn't be stuck on the floor waiting for someone to rescue me. In that short time, my hips completely inflamed and starting shooting strong pains down into my toes. I had to accede that yes, in fact, I had not been miraculously cured when I wasn't looking. Unfortunately, my hips haven't forgotten the slight and are still yelling at me, but it was good to know. It was good to push my limits. It was important today, when the baby and I got stuck in the livingroom due to an oversight (which is down a hard ramp) to know that it was safer for me to shuffle the 20' to her crib and exert all my self control to keep my leg from collapsing than it was to try and balance her on my lap while attempting the ramp.

It fascinates me how much pain can become part of your self identity. "I am Tokah" quickly becomes "I am Tokah, that person who is in pain all the time." But I'm not. I'm just Tokah, and what I'm functional to do at my lowest doesn't define me anymore than how well I do at my best. I might currently be dextrous, mediocre at writing, and not conventionally attractive, but none of those things can define who I am. They color my life, cause me to have experiences that shape who I am, but becoming suddenly clumsy, a brilliant author, and beautiful wouldn't make me any less Tokah.


Nina said...

As the Quakers say, you speak to my condition. Thanks for the insights about disability and self.

Philip. said...

Congratulations on your marriage :-)