I know I am the same person I was before I accepted the fact that I had cerebral palsy and there was nothing I could do about it. There’s no cure, only management. It’s the management that drops my heart into my stomach, because how can you manage something that’s so random? Falls happen. Running into stuff happens. The worst part is being clumsy AND having monocular vision, because when I fall because of something that’s out of my field of vision, my reflexes aren’t fast enough to catch me. Yesterday I didn’t see the step down off a sidewalk and fell so hard on my left hip that I saw stars. I thought I had broken something, but I didn’t. I just have a bruise that would make the medical journals and lingering pain from pebbles and asphalt. Nearly breaking my ass was a wonderful way to start my day, just in case you were wondering.
Life is easier when I have a partner or friend to watch out for me. Sometimes they point out things I might miss, sometimes it helps to have someone to hold onto or help me up. My dad is obviously the best at it, because he’s had decades of experience saying, “watch it. There’s a step down.” Sidewalks are evil (especially when the city leaves them jagged because of buckling), as are door frames, particularly the left side. This is because I am right-eye dominant, and the left side is out of my field of vision. My shoulders sometimes ache from running into them. Is it any wonder that I feel the safest in my own room?
I get agoraphobic sometimes because I am not immune to being laughed at when I fall, nor are people graceful about my lazy eyes (they drift one at a time depending on my field of vision- called an alternating isotropia). I think that people will be less likely to laugh the older I get, because the chance I’ve really hurt myself will be higher. Right now, I just look like a goofy teenager who’s always clowning, as if I am taking pratfalls on purpose.
For the record, I am not.
I will be 42 years old on September 10th, but I look a lot younger than I am because I tend to wear boys’ clothes. I like looking crispy and if I shop in the big boys’ section, I have Oxfords and Polos where the shoulders fit perfectly, as well as shorts that don’t come down past my knees. I think it’s hilarious that I am so liberal, and yet most days I look like a tiny Alex P. Keaton (wow, that reference proves I’m the age I say I am……….).
There’s a simple reason I dress the way I do. Most people think it’s because I’m a little bit butch, a little bit femme. Nope. It’s because I still want to look good even though I need comfortable clothes and shoes in which I can really move. I look fantastic in dresses and heels, but it increases the chance that I will fall by at least 75 percent. The last time I wore heels, the muscles in my left leg went slack and I went to the floor in a heap. That was nine years ago. It just helps that I have the boyish charm of a lesbian to make my style pop. My style actually got better when (ironically) I met a straight woman that looks even better in men’s clothes than I do.
When I sent her sister a picture of me, she said “are you channeling your inner ________? I can think of worse people to resemble.” I replied, “it was accidental, but I’ll give you the popped collar for free. Thank you for pointing it out. I appreciate it sooooooo much. Now, every time I get dressed, I ask myself ‘is this too ________?'” It’s okay. I just chalk it up to the fact that my friend is evil and must be stopped. She knows it. It’s a thing. It has provided us with an endless supply of the fun kind of being teased. I like it.
That was six years ago, and I STILL ask myself if my outfit is too ____________.
Sometimes I don’t care. I like having a style icon to look up to when I am having trouble picking out clothes on my own. I ask myself if she would look hot in it, and if the mental picture is on point, I buy it. We have the same body type, so if she looks good in it, I will, too. It’s been nice to have clothes in which I look polished, but don’t impede my movement more than clothes already do.
I won’t lie, though. I miss the way girl clothes make me feel. Or as Dana and I used to joke about them, “my ho clothes.” I never minded going to clubs in short skirts, etc. because if I fell, people would just assume I was drunk and help me up.
In terms of “helping me up,” I absolutely hate the way that cerebral palsy lessens my self-reliance. I can get around alone, and I do. But having a companion, no matter who it is (parent, sibling, partner, friend), makes walking around the city so much easier. I have done a lot of crying over the past few weeks (months?) because it has finally sunk in that I am not going to recover from this. My movement will never be any better than it is right now. It is a bitter, bitter pill to swallow…. and yet another reason why I shy away from dating because I am terrified of becoming reliant on someone, even though it’s something that would help me navigate life so much easier.
My attitude right now reminds me of my sister when she was a toddler. If my parents were helping her to a degree she thought was too much, she would say indignantly and angrily “wanna do it BYMYSELF!” It’s not a question of desire to be completely self-sufficient, but practicality.
My health is a psychological issue I need to work on, because it makes my self-worth plummet. Whether it’s rational or not, it makes me feel like a burden and I’ve felt that way for years. Asking someone to take on CP and Bipolar II is a lot, especially when each one is big enough on its own. In my reading about CP, I learned that it can cause mental health problems, so it’s not impossible that the two conditions are related. The difference is that in terms of keeping things under control, Bipolar II is so much easier. There’s medications for it, many of them. If the medication I’m currently on stops working, I have resources.
Physically, I got nothin.’ By that I mean preventative medication. The only thing I can do right now is take pain meds after I fall. Ibuprofen and arthritis-strength Tylenol™ have been lifesavers. Walking helps to a degree, because my muscles get stronger over time. It is also fraught, though, because the more I walk outside, the more chances there are to trip over things.
The one thing I feel good about is that I’m not a flake. I’m not ditzy. These things don’t happen in a vacuum. There’s a solid reason for it, when previously I thought I was just having dumbass attacks all the time. It has solidified my need to take care of myself mentally and physically.
But again, the question on my mind is always “how do you take care of a problem you can’t see? It’s hard enough with problems you can.” I haven’t been idle about looking for help, though. I feel like it would be beneficial to get into group therapy for people who have the same disorder. I am sure that I will find one, but what I’ve found so far is for the parents of kids with juvenile cases and learning to navigate the school system, their home lives, their adjustment to not having a kid that’s completely normal, etc. No wonder my mother wanted to pretend I was.
There is no such thing as competitive suffering, but there are two sides to that coin. The first is being grateful that I do not need crutches or a walker to get around, and that my case is as mild as it is. The second is being able to accept the fact that though others are suffering more, that doesn’t mean I don’t.
I mean, I nearly broke my ass.