cerebral palsy


It’s been quiet around here, I know.

I haven’t said too, too much as yet about having cerebral palsy or what was involved in going from the way I used to be to the way I am now, owing a great deal to timing: for a bit there, most of the people coming here were very, very interested in my throuple marriage. On that subject, I intend to publish a post tomorrow about the perks for which I am grateful within my polyamorous marriage. Sort of in the holiday spirit, if a little late. I’ve been preoccupied.

Or, I should say, I have been stressed and anxious to agonizing, painful distraction.

Cerebral palsy is brain damage. It varies in severity and affectation so much because the places, and sizes, of damage vary too. Mine is spastic diplegic — both my legs are affected. Those aren’t the only places I’m hindered, as I have learned through living with this body, but “spastic diplegic” is an easy short-hand to direct attention to the worst of it.

It’s funny, but my brain — the higher, thinking part of it (the part that works) — is the part of me of which I’m most proud. Thinking, reasoning, articulating — these come easiest to me, and always have. My mother used to say to me: “People with CP are brilliant minds trapped in broken bodies.” I think that’s apt.

I was always great at test-taking, by which I mean the pen-and-paper kind. I never had anxiety about them, and I almost always got exemplary grades. Then, along came the challenge of driving.

I had had many corrective surgeries by then, so that my physical situation was a lot different than it had been when I was a child. (Other girls had time to watch their breasts grow; all I had time for was watching my progress at physical therapy. When all that was over, then I noticed that my body had changed in other ways. Only then. But that shock is another post.) No matter the improvements however, it was not enough… Driving was a real challenge for me.

I remember one day, my mother and I were talking about my woes regarding driving and, more specifically, the driving test.

“Well,” I said, “I mean… I have cerebral palsy.”

To which she replied: “No you don’t. You’re cured.”

This remark confounded me. I love my mother very much. She has done everything, everything in her power to understand, support, love and nurture me. I don’t begrudge her misunderstanding, because she doesn’t live in my body like I do. The truth is, though, that no matter how many modifications are made to my legs, I will never be cured. Or fixed. The disability is in my brain.

Looking at the moment now, I understand where we misunderstood each other, both at the same time. She thought I was talking about not being able to drive — that I was saying, for example, that because of my legs I couldn’t work the pedals, or because of my brain that I was incapable. In that case, her response was right on and good; it was as if she were saying, “You go, girl; you’re not missing anything other drivers have, not anymore!”

Totally true.

And I wasn’t old enough then, at sixteen or whatever, to articulate what I really felt. I had the words — I always have words — but not the courage to own as legitimate my own feelings or challenges. Now I do. What I felt then was an anxiety about driving, and about being evaluated for the same, that wrecked my body. What does everyone know about palsy?

Any hands up?

It makes you shake, baby. And not in the good way. For me (and for all?) anxiety compounds the issue, and the only other option is extreme rigor. Driving, my hands locked to the wheel in a paralysis of panic, to fight the trembling. My leg muscles were tense, my back was sore. I got out of the car from my hour with an instructor with a terrible migraine. Every. Single. Time. It didn’t seem like it would ever be a feasible reality, me driving. Why? Because all of these things still happened inside me even when everyone on the outside of me said that I was a wonderful driver, and that I was sure to pass my test. As far as performance, I was GREAT. But it was killing me. I hated it. I hated everyone who was “putting me through it,” for a time. I remember my father bought me all things car-related for my birthday that year, and I felt like he was mocking me (because I had tried to explain my trouble to him many times by then). I cried after he left.

My test date came. I went into it begrudgingly. I was even more panicky because this was for real, the big time — a TEST, and tests I hate to fail, nerd that I am. I failed, and all I had to show at the end of it was another whopping migraine. I cried. I felt like a huge failure. I refused a re-test, thinking myself unfit for the adult world. I assumed I would live my life dependent on the mercy and timetable of others, because I couldn’t face up to the awfulness of this thing. And no one around me was willing to agree with me that maybe, just maybe, my CP made it harder for me. I had gotten the impression that folks thought I was making a huge deal of nothing, so I hid in my shell, called myself an idiot, and shut way, way down.

I lived as a dependent, non-driver ever after (about 9 years). I met my now-legal husband. We married. He had no problem being my transportation, never pushed me, never questioned the validity of the pain I could recall too easily. I did other things for him, he said, and he could do this for me. I have my master’s degree because of that man’s goodness, his commitment to that promise. He saw that I got to classes even when they met two hours from where we lived at the time. It makes me tear up just thinking about it. He never complained, not once.

Not once, for goodness’ sake…

Things got simpler yet when we linked up with other husband. Now we were a network of helping each other, seeing that all were fed and well and loved and, in my case, transported in a timely fashion. We built what we lovingly call a tiny artist’s commune between the three of us. We made an effort to be positive, to be open and honest, and to be receptive to what one another had to say. We wanted to understand, not to shut each other down.

And one day I said that I would like to try driving again, if they would help me. My stipulations were that they had to be patient, and understand that this was the hardest thing I would probably ever have to do. They had to listen when I said I couldn’t do anymore on a particular drive, so that there were no bad, deterrent experiences. And they had to refrain from making long-term goals for me… at least out loud. Of course, they said.

So we started. Parking lots. I was rusty. I almost hit a dumpster and I couldn’t park to save my life. A few weeks later, I mastered pull-ins and turning again, and took to the back roads. I started changing lanes in panic mode. I started changing lanes out of panic mode. I noticed other drivers making bad moves, and anticipated them. I got on the highway. A lot. I waited all the while for the return of the migraines, the hyper-tension, but it never came. I was practicing with people who loved me, and who knew that this was hard for me, instead of curt and impatient strangers.

My mom found out I was trying again and, in her infinite joy and generosity, bought me a car. Three weeks ago, I took the second driver’s test of my life. The husbands came with me (other husband with a Rarity figurine on his knee, brought along for luck). They held one of my hands each while we waited for my name to be called. When I came back crying, because I had failed, they took me to breakfast anyway and we talked it all through. I had a good long cry in the car on other husband’s shoulder.

Then I drove us home. I wasn’t giving up this time. I had made a new test date, for three weeks later. For today. It made me a huge stress ball for Thanksgiving, and — as I said at the beginning — impeded my ability to embark on creative anything (though I did make a dessert, and read other husband a good chunk of Tess of the D’Urbervilles while he cooked.) I cried in panic and self-hate and restlessness when I couldn’t sleep last night. I wished the test was behind me even as I wished it would never happen.

I was with legal husband only when I went today, as other husband had some Man of Honor duties to do for an engaged lady friend. I came back into the DMV crying, yet again. But this time legal husband cried, too, and then I got my picture taken by a guy who looked like Santa Claus.


Bicycle Race

Even before I was born, my mother had to square with the fact that I might die.

Her contractions started about a month too early, and as a premature baby I was at risk for a whole bunch of things. The most terrifying possibility was that my under-developed lungs weren’t world-worthy, and I might suffocate when I left the womb. The doctors had my mom sign a waiver that she wouldn’t sue, because in working to better my odds of getting oxygen they were also making cerebral palsy more likely. I’m safe in saying that everyone is happy with that decision, as I’m alive to write about it.

Still, my mother had seen the Grim Reaper over her shoulder, gunning—scything?—for her baby. They played high-stakes tug-o-war for a while as I, the trophy child, sat by in a clear plastic crib, wrapped up in tubes and tape. When at last my mother wrested me from the bastard she stormed from the hospital for the last time and didn’t look back. Whatever else she did, she had determined never again to let Death near her daughter.

In winter, I was that kid wearing a full-body snowsuit so thick that I couldn’t put my arms down. Underneath, I wore a sweater, sweatpants, and a jacket. I remember longing so much to actually feel the cold that I bolted into the night jacketless—just for a second—from the sliding door of our kitchen. I came back as soon as I was shouted for, but I had a moment of freedom and it was worth it.

In summer, I rode my bike, a scooter, and even—for one ill-advised moment—a pogo stick. But on top of the standard-issue helmet, I was required by maternal law to wear elbow- and knee-pads. If I was going to go out into a world where Death walked free, I was going to do it in armor.

For a long time, I went along. I was a Good KidTM, operating indefinitely under the assumptions that 1) Mom was always honest, 2) Mom was always looking out for me, and 3) Mom probably knew best anyway, so whatever. Then, one day, I forgot the elbow- and knee-pads.

She didn’t notice. Then I started skipping them on purpose. But hey, I still wore my helmet. Right about then was when I started pulling stupid stunts.

It started with the stairs. We lived in a split-level condo, so on either side of the long building there was a big hill. On the right, there was a sidewalk that led from the front parking lot to the back one. In-between, in order to navigate the hill, the sidewalk broke up into three steps. Each one was far enough from the previous one to fit a bicycle. So, on that pad-less day, I rode down the stairs.

I did it slowly the first time, certain that some law of physics beyond my comprehension would immediately bring about my death simply because I was doing something I was not supposed to do. Navigating each step was a shock to my system: first the climbing anticipation as the wheel approached a step, then overtook it, hovering over nothing; and then the crash that shook the bike and me.

Everything rattled. Then everything was still. And I hadn’t died.

Soon I was riding circuits around the condo. No stopping, no slowing down. From there, I started trying to tighten my bike turns in the parking lots. I remember—though perhaps I remember wrongly—one time brushing the side of my sneaker (which was on the bike pedal) against the ground during a turn, and not falling over.

Down the other side of the condos, instead of lawn, was a bunch of trees. There was sidewalk there, too, but it just ran in a long, somewhat steep decline. Here and there old tree roots broke up, through the cement, for tripping over. I used to ride full-speed down that hill, bumping over the cracks and the roots, until I flew off the sidewalk at the bottom and rode a victory lap through the big puddle that always gathered in the waiting parking lot after a good rain. It was wonderful.

One time, I rode so hard up onto my mother’s lawn that I flew off the bike seat and into the handlebars. My chest ached for days. I scraped my hands, skinned my knees, and scared myself. Finally, I realized what my mother had known from the first: in everything I did, I might die.

The knowledge was liberating. It gave my life value, because it could be taken away.

The pain was liberating. It made my body a real thing: weak because it sustained injuries, but strong because it could withstand them.

I wasn’t going to live forever, and I wasn’t just my brain. Those were the two things I learned out on my bicycle. I had limits—of control, time, pain thresholds—and the real joy of existence is exploring all that lies between them and me. Maybe even pushing them.

A little.