Friday, May 4, 2012


Nobody likes admitting that they have limitations. We all like to imagine ourselves as invincible! We are unstoppable and nothing can hamper our progress or stop us from doing whatever we set our minds to.

Except… not really. Everybody has limitations. No matter how much coffee and RedBull a college student drinks, we know eventually the all-nighters have to end. No matter how much we may want to be able to be a successful college student, work, and have a social life, something has to give. For most people it’s the grades or work. For me it was my social life, but that’s neither here nor there.

I have accepted my disability; I have accepted everything that comes with it. The chronic pain, the exhaustion, the stares and comments out in public, the whole kit and kaboodle. One of the things I have not yet accepted and maybe never truly will, is my limitations. I refuse to be limited by my disability. And so I push myself past the brink of sanity and take on more work and responsibility that most able-bodied people my own age. I am a full-time student (which this year means student teaching from 8:30-3:30 five days a week); I work two part-time jobs anywhere from 4 to 6 days a week (depending on how manic I am any given semester); and I’m about to graduate with honors in (less than!) two weeks. All of that would be a lot for any college student to take on, but I have to throw a disability into the mix. I have to throw the pain and exhaustion and days of mental exhaustion into the mix. Days where my brain won’t think as fast as I want it to or form sentences the way I want it to. It isn’t just the medications that do this; I have chronic mild aphasia (which feels as though it should be an oxymoron). Not every minute of every day, but every day I have moments where I can’t make my brain find the words I want it to.

Most people who know me are probably saying “yeah, right”. That I’m exaggerating. Not so. I have had mild aphasia for so long that I’m pretty adept at quickly finding a substitute word that kind of works so people don’t notice I can’t speak the way I want to. If you’ve ever heard me say “my words aren’t working right today” or something like that, that was a moment of aphasia. Unless it’s really really bad, people typically don’t notice. There might be a momentary pause in something I’m saying or a lapse in attention, but people don’t really notice. Especially not when you do it all the time.
When you throw the aphasia, the mental fogginess and confusion (when I’m tired), the constant movement, and the pain into the mix of a super busy working college student, it’s no wonder that I have limitations. I refuse to admit to them though, and typically work past my limitations until my body refuses to go any further and begins to shut down.

I joke that it was a cruel twist of fate that gave a stubborn, pain-in-the-ass control freak like me Tourette Syndrome. I love control; always have. But when I began to lose control of my body, I didn’t just love being in control. I had to control everything around me because I couldn’t control one thing I was supposed to be able to. My body. My voice. That loss of control pushed me over the stubborn controlling edge, and I’m worse today than I’ve ever been. I know this about my pathology though; as much as I know I want to be in control all the time, I also know that it isn’t possible. I have to make a conscious effort to not try and control everything and panic over things that I can’t control. Most of the times I do… okay. I’m not great at it; but I try. I recognize when I’m spinning out of control and about to drive everybody around me crazy, and I try to rein it in.

But the one thing I’ve never been good at admitting, never been good at relinquishing control about, is that my body has limitations. I’ve been sick for over a month now; not seriously sick, but enough that I feel (as my students say) “yucky”. That should have been my first clue, but I ignored it. Pretended like I wasn’t that sick, and when you’re sick for a long enough time, suddenly that’s normal. And you forget that there’s a problem, that your body is trying to tell you to slow down.

I’m better at listening to my body than I used to be, but I still don’t like what it has to say sometimes. I don’t like when it says “slow down” or “take a break”. I don’t want to listen when it says “stay home today” because I have made commitments to people in my life; my professors, my cooperating teacher, my students, my boss. I hate breaking these commitments due to something out of my control. So I pretend; I pretend that I feel okay, that I’m not sick.

The seriously funny (read: ironic) thing is that when you are sick and exhausted all the time, people don’t think there’s anything wrong with you. My cooperating teacher can’t tell when I haven’t slept because the circles under my eyes look no worse than any other day. Nobody can tell when my energy level is low, because it’s always low. My boss can kind of tell when I’m really really off, but that’s partly because that job requires a lot of perkiness and energy and it’s easy to tell when I can’t fake that.

This week I did what I probably should have done a few weeks ago; I took a break from work. I’m not stupid or masochistic, I don’t kill myself working 12 hour days for the fun of it; I do it so I can support myself. My family helps me; a lot. But I also live by myself, which means I’m responsible for all of the rent and utilities. If I were capable of sharing a living space with one or two other people, my rent would be significantly lower, and I probably wouldn’t have to work. But I can’t share a living space with people; I desperately need a space where I don’t have to worry about what I sound like or look like, how loud I am late into the night or how loud a roommate is being when all I want to do is sleep. So the compromise is to work so that I’m able to live by myself. Most days, the payoff of getting a paycheck (no matter how scant it may be) is worth it. I hate the feeling of dependence and I prefer to be able to make money to help support myself.

But this late in the semester, after week upon week (15 to be exact, but who’s counting) of 11- and 12-hour days, my body crashed. Shut down. Said “no more.” It was a long-time coming, but I finally had a panic attack towards the end of last week. There was no “reason” for it; I am for all intents and purposes done with my semester assignments, I only had a few seminar-like things left. I’m virtually done with student teaching, I have no more homework. There was no reason for me to have a panic attack, but I had one anyway. The only reasonable explanation was that the exhaustion, the long days and the cruddy sleep and the unnecessary stress from impending graduation was too much for my body. And because I hadn’t “listened” when it told me to take a break months ago, I shut down and had a week-long panic attack (which is finally feeling controllable today after taking prescription medication for a few days).

Thankfully I have an understanding boss and cooperating teacher. I’m able to say “I need a break,” and it’s okay. It’s not ideal; I wish I were able to work as much as I want to. I wish I didn’t have to choose between my sanity and getting a paycheck. But I do. And I hate it; not because I don’t enjoy going home at a reasonable time this week, but I hate being a slave to my body. I hate having to admit to limitations that I don’t think I should have.

I don’t know if it would have been easier had I been diagnosed with Tourette Syndrome when I was younger; before I had had a chance to develop such a die-hard workaholic attitude. In some respects, becoming symptomatic at 15 was a good thing; I was able to better verbalize what was happening and I got a diagnosis much faster than normal. Had I been diagnosed at the normal age of onset (about 7) though, I would have had a lot more time to come to terms with my disability. Being a teenager may not have sucked so badly if I hadn’t been trying to cope with a new neurological disability at the same time. Maybe I would have learned how to understand and admit to my limitations; maybe I wouldn’t have been killing myself in school trying to work and get by. But then again, knowing me, I probably would have done all of those things anyway.