Every March for the last five years would usually find me staring down a month-long duel with sleep deprivation and even poorer eating habits than the typical college student. As the president of Alliance for Disability Awareness, Ball State’s disability advocacy group, March was essentially my Christmas because it is Indiana’s disability awareness month. To celebrate and do our part as advocates ADA planned and orchestrated a full month of activities for the campus to be involved with, yours truly at the helm with the help of my over worked officers.
It was crazy busy and crazy fun. And in the midst of running around like a chicken with my head cut off delivering fliers, talking to classes and making sure our events went as smooth as possible, I think we, and I, actually reached people. We were successful, maybe only on a small-scale, of spreading awareness about disability and for some of us sharing first hand experience about living with a disability. For that month even more than the rest of my time in ADA I felt like I was making a difference.
Fast forward to now. I’m no longer president of ADA, I’m actually graduated and have moved away from campus and Muncie. I’m married and living with my new husband in our tiny apartment and looking for my first job post grad. And it’s March. I’ve got the itch. My brain can’t process the excess of sleep it’s getting although my stomach is thankful for the regular feedings. More than anything I feel the need to be doing. Planning, running, talking. Advocating. If I’m not spreading awareness to others I’m not doing my part for disability awareness month am I?
Then I got to thinking about everything I have been doing and dealing with this month and before. I’ve been dealing with health issues, adjusting to married life, and more than anything trying to figure out what my new role is, what I’m supposed to be doing with life. In short I got a little meta, a wild ride I assure you. All that meta cognition showed me one thing, rather than my usual spreading awareness to others, I’d been forced to become aware of things about myself as a person with a disability. These are things I’ve always understood about myself but I’ve only recently tried to really think them through. This is where I’m at so far:
I’m stubborn. Asking for help is akin to emotional torture for me on occasion. But I need help. Lots of it. So I’m learning, and failing daily at the art of receiving help from others, namely my husband. Bless his heart for putting up with me. I’m not entirely pleasant and when I’m aggravated because I can’t do something I’m even less so.
I also worry too much. This is a big one. I’ve always been a worrier but given free time to let my brain run wild, worry turns to anxiety and occasionally panic and bouts of depression when the things I’m over thinking or worrying about overwhelm me. Something should probably be done about this before I become the latest case of internal combustion. Sorry if that’s too flip. Moving on…
I am disabled. If you just said to yourself, “Well DUH!”, you’re not wrong. I’m a wheelchair user lacking lower body mobility and feeling past my knees. I’m disabled in several definitions of the word. But recently I guess I’ve actually felt disabled. I’m independent and resourceful so I’ve had very few occasions to feel disabled. So when I do it floors me. But the combination of not being able to do things on my own that used to be no problem and having to rely on others more has really shown me where my limitations are.
What’s equally frustrating is that this changes from day-to-day. Some days are great and I’m full of energy and motivation and I damn well get things done. And others I can barely get out of bed and dress myself and then have to rely on others for transportation or something else a “normal” 24-year-old doesn’t have to. This brings me to my latest revelation and the one that is hardest to deal with.
I don’t want to be disabled. If you’re hell-bent on maintaining a picture of me as the inspiring girl in a wheelchair who is nothing but completely grateful for what health she does have and whose valiant daily struggle makes you take a second look at your life, let me say two things. One, I have no idea where that image would have come from. And two, stop reading before it gets damaged for good.
I’m serious though. I don’t want to be disabled, or at the very least I don’t want to be anymore disabled than I already am and than I’m used to being. And lately that’s how I’ve felt. My body and sometimes my mind refuses to listen to me. And that pisses me off.
At this point I feel like I should apologize, partially in case anyone reads this and gets pissed and feels like I’m a bad disabled person. But maybe I am. Maybe being angry that I’m having to adjust to losing certain controls I’m used to having violates my image as a disabled person and an advocate for myself and others.
But I also want to apologize because I don’t mean to come off as some ungrateful whiner. And I’m not saying others who are dealing with worse health issues have it worse than I do and should be angry. Everyone is entitled to their own thoughts and feelings about their lives. I’m simply trying to express mine. And honestly what it boils down to for me is change. Things with my health have changed a little and I don’t feel like I have the control over myself that I used to.
That’s it. This is what I’ve taken away from this disability awareness month, awareness of myself. Again, thanks for listening. This is helping me and I hope you’re getting something out of it too. So until next time…