Tuesday, May 29, 2012

This is lovely. Just lovely.

The Pink Tutu Project

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.

Monday, May 14, 2012

R.I.P. Zoidberg

Over the weekend, while we enjoyed ourselves in sunny, lovely Connecticut (at the home of my sunny, lovely BFF Anke), one of the rockin' hermit crabs died.

I think his name was Zoidberg, but it might have been Goat.

This makes me sad. Especially because Benjy had forgotten to check their water dish before we left, even with prodding, and I found Zoidberg/Goat on top of the hermies' little drinking sponge, which was dry as a bone in a dry water dish.

Now, the other three hermies were fine, so I have to believe that Zoidberg/Goat was going to die anyway. But still, the thought of him searching for water, parched and possibly dying (well, certainly dying) makes me want to cry.

And here's the sad truth: Benjy loves animals more than anything on this earth, but he is not a good pet owner. If I didn't remind him to feed his fish and feed/water the rockin' hermies, they'd all have died a year ago. If I didn't drag him off the computer to clean the fish tank those little guys would be swimming in a murky stew.

And yet, he wants ever more animals. This drives me crazy.

But you know what? I was not so different. I loved animals beyond measure when I was eight, nine, ten, thirteen. We had a family cat, and I had a number of small rodents. I had a hermit crab, too. The hermie died quite quickly, but I don't remember ever receiving instructions for care. He probably either suffocated because we had no salt water in his tank, or died of loneliness because he was singleton and like most of us they need company.

My biggest animal (in every sense) was my horse, Stardust. She was my best friend in those lonely years, but if you think I mucked out her stall frequently enough you're quite mistaken. And there was the time I forgot to tell my father to buy more sweet feed and I got to the barn to feed her but there was no food. I gave her some extra flakes of hay and went home and wept. She got a disease colloquially known as mud fever as a result of my shoddy stall-mucking skills, and she got a fungus -- God knows why -- and lost half the hair on her body. These memories are excruciating to me. I let Star down, big time. I was not ready to be a horse owner at the age of thirteen, fourteen, and my parents were not interested in horse care, nor did they know anything about it.

I was like Benjy: in love with animals but not responsible enough to own any. I have such terrible remorse about my animal failures. There are more stories about Stardust to tell, some wonderful and some very sad. If I have the courage maybe I'll tell them to you sometime. If there are points to be awarded for love and affection then I should get a million of those. But I'd lose at least half of them for my benign neglect.

At least the weekend's death was on a small scale. I hope Benjy has learned a lesson about water bowls and small sponges and the value of even the littlest of lives.

Sunday, May 13, 2012

Disability and Work, Revisited

It's a long time since I wrote a post on Disability and Work. At the time, our family, our son, was struggling with severe mental illness. He wanted to die. He hurt himself sometimes. He could not be left alone, or even out of my sight. Work had become untenable; I was canceling classes and office hours right and left. I was distracted as hell. My child wanted to die, and I just didn't care about a bunch of Freshman English essays.

So I left work and we went from pinched to officially broke. Planning every expenditure down to the penny. Saying no to the kids. A LOT. Buying only used clothes and very little else, besides food. And buying that at places like Aldi. That part of it has not been fun.

But it's been great only having one full-time job. Because before I was doing at least two. Maybe two and a half.

And now, things are changing again. Because Benjy is so much better. Unbelievably so. (Well, he did have a breakdown last week as a result of an unpleasant encounter with another kid at the Joy School. But that was the first in months. And he recovered pretty quickly.) And we are afraid if I continue working just one full-time job, an unpaid one, we will never be able to retire. We are beginning to imagine Lars hobbling to work with a walker. And it's kind of funny but mostly sad.

So as of tomorrow I am throwing my hat back in the ring. I'm applying for college administrator positions (I think I'm finished with teaching).

We've had to really think this through. Because if I go to work it will mean that Benjy has to take the SPED van to and from school, instead of driving with me, and he'll need to let himself in the house after school and hang out until Saskia gets home. This scares me a little. But on the other hand he's twelve now, and in sixth grade. If not now, when?

Of course, I'm counting my chickens. I don't have a job yet, and it may take a very long time to find one. But I'm looking forward to having a couple hundred dollars to put in our empty savings account each month. And being able to replace our roof when it decides to implode on us (this will probably happen soon). And being able to pay off the thousand dollar car repair expense we just incurred.

I don't know what the future holds, and whether, if I get a job, I"ll be able to keep it. We take things one day at a time here in the Delaunay household. But I'm starting to develop a slightly longer perspective. Like maybe looking out a month at a time.

I'm doing that right now, and the month of May looks like it's going to be fair and warm.

Friday, May 4, 2012

What We Have Take II

I've had a challenge from my wise and wonderful reader "Papa" (which I'm guessing is what his lucky grandchildren call him) to make a list of positive things we have around here, which is as long as my previous list of 19 crappy things.

Papa, you're on!

We have:

Cuteness (especially on the junior varsity level)
Some culinary abilities
A knockout voice (only one of us, sadly)
Killer paper-gunmaking abilities (only one of us, but the other one)
Decent interior decorating skills (yet a different one of us)
Technological prowess (some of us)
Excellent trampoline maneuvers
Awesome writing skills
Awesome translation skills
Some great art on our walls
Three beautiful hydrangea blossoms sitting on the coffee table in front of me (okay, okay, I'm stretching)
"Impeccable taste in literature" (quoting Dad, circa 1982. This compliment was actually a back-handed insult of my Top 40 musical taste)
Enough love to go around and then some
The most adorable canine felon in town -- he's really, really cute, despite being a worse dog even than Marley, who was reputedly pretty bad

Papa, are you satisfied? :)