Tuesday, May 29, 2012

Owning a Disability

Wow, it's been two weeks since I blogged. Mea culpa. I got lazy, I guess -- or uninspired. Hope my American readers all had a great Memorial Day weekend!

I've been thinking a lot about the ways in which disability can form a person's identity, in either a positive or negative way (i.e. THIS is who I am, or this is who I do NOT want to be). Benjy is such an admirable person for the way he owns his disabilities.

"Oh, I have Asperger's," he'll say, either in explanation  of some oddity about himself or just to convey who he thinks he is. He has said this to adults and kids alike. I've heard him talk about his anxiety and depression, too. There is no shame or self-loathing there. He owns his disabilities, knows they are a part of the amalgam of things that make Benjy Benjy, and therefore to be accepted, if not embraced.

I love that about him. He is much more at ease with himself than I was with myself, until fairly recently.

Because I have a disability too, and it has taken me a long time to be able to talk about it, even though it is a fairly obvious one.

I have Tourette's Syndrome, which has awkward symptoms, to put it mildly. Even medicated I sometimes tic, so it's not like people don't notice something's up.

For years, I couldn't acknowledge this issue to anyone but myself or my family. If some cruel person made fun of me, or accused me of "talking to myself," I would not say, "I have a disability, and it's called Tourette's, and it causes me to have vocal and motor tics." No way. I didn't even KNOW it was a disability, let alone admit as much. I just knew I did these weird things, and they were called tics, and I went to see a doctor in New York City once a month, and this doctor put me on The Worst Medication In The World, AKA Haldol, and it turned me into a fat zombie with slurred speech but I still could not own this thing that I had.

I remember as a graduate student sitting in the manuscripts collection of the British Library, looking delightedly at some 19th-century plays and theatre memorabilia for my dissertation. I was in heaven, English nerd that I was. And this horrible woman was sitting at the next table, looking at some medieval illuminated mansucripts that were WAY too good for her, and she kept angrily shushing me -- I guess I was making soft noises, because I was not at all aware of it and usually I am -- and glaring at me. If looks could kill I'd have died some horrible medieval death, on the spot.

I sat there, flushed with humiliation. I could not look her in the eye. I felt like a worm. Finally, when the shame of her abuse became greater than the shame of admitting my disability, I hissed, I have Tourette's Syndrome. I can't HELP it! And you know what she did? She waved me away with her hand like I was a gnat or something. Just dismissed me. So I went to the bathroom and cried for about ten minutes. When I got back to my table she was gone, but I didn't have the heart to sit there and continue my research. She had spoiled everything.

These days I have let go of my self-loathing. Like my boy, I know that my disability is simply a part of me. I have lots of friends who see it that way, and have had two husbands who were/are NOT EMBARRASSED TO BE ASSOCIATED WITH ME. Imagine that.

The reason I'm thinking about my Tourette's today is because I have gone off my medication, which put forty pounds on me over the past twelve years (still, it's better than the DREADED HALDOL), so I can try a new one. I am hoping this new one will ease my tics, not destroy me with side-effects, and allow me to return to my normal weight. I await its delivery at my door today with trepidation and a large dollop of hopefulness. In the meantime, two days off the Risperdal, the tics are waxing something fierce. I do not like it -- it's very uncomfortable, physically as well as socially -- but if I can get my old body back it will be worth a week of heightened ticciness.

I'll take Ben as my inspiration for how to live gracefully as the person I am.

1 comment:

  1. You are awesome how you are, although I shudder to think of you on, um, Haldol. FWIW, I had no idea after knowing you for two years. Good luck with the med change and I can't weight to see the new look :-)