What Cerebral Palsy Has Been to Me
How do you define the relationship you have with your condition? My cerebral palsy has been many things over the years. It’s been a cruel brother, a tricky ally, an overactive advocate, and that clingy friend you don’t want at parties because for some reason he gets weird when there are lots of people around. On rare occasions, once in a blue moon really, he can be the wisest of teachers, even if learning my lesson means losing a scuffle with a pair of pants. They were “Lucky” Brand, of course.
I’ll begin with a bit of backstory. Due to my spastic diplegia, and due (at least in part) to a considerable effort by western medicine to dissuade me from intense exercise, I sort of “bounced” in and out of a wheelchair throughout my younger years. When college came around, I thought I’d use my status as a feisty 18-year old to refuse wheelchair assistance. I managed pretty well ignoring doctors’ orders at first. I even went as far as majoring in exercise sports science. Things were going awesome until one fateful Sunday.
It was my grandmother’s funeral, I’d just been 86’d (dumped, for the laymen), and I got “Sonny Liston’ed” by the Muhammad Ali of blue jeans. Here’s the slightly longer version of that last bit: I was wrestling the garment over my KAFO brace keeping my left leg stable, and somehow, rough fabric got caught on the stainless-steel-hinged knee joint. Out of frustration, I yanked up as hard as I could, straightening my left leg on the same motion. In a snap, the jeans broke free. I heard an odd crackle, followed by the kind of pop that makes your stomach turn. So much for a balanced breakfast.
My eyes closed in fierce defiance of the pain. My body knew I should not bear witness to the wreckage that was once my fragile kneecap. There were no words to describe how dislocated it had become. The worst hurt, however, came from an incredibly selfish thought creeping up right after the incident. It was my grandmother’s funeral, and all I could think was: what will my family say now that I’m stuck sitting down all over again?
Despite the trauma that I went through, and the typical heaviness that leans over a funeral, I felt a sense of joyful release in the air. Maybe it was getting to see my family again. Maybe I felt my grandmother was free. Maybe it was all the Percocet. Either way, I couldn’t help but think things were going to be OK. I know you’re supposed to be sad at funerals, but that day I honestly felt like my own mortality was smiling at me. I decided if I ever wanted to stand up again, I’d have to start by looking in that direction, even if life wasn’t all it was cracked up to be.
Several months later, despite a wonderful surgeon, great medical care and lots of rehab, doctors weren’t sure whether I’d find my feet on the ground again. I stayed positive despite their concern. I needed to stay positive. I was about to go to my cousin’s wedding after all. Nobody likes a sad sap at weddings, unless we’re talking tears of joy.
I managed to stay joyful and roll with the circumstances all the way up to the reception. Then my heart fell apart at the sight of the dance floor. I had forgotten how much I loved to dance. I’m terrible at it, but you can be terrible at something and love it. Just ask William Hung from “American Idol.”
In that moment, I heard the voice of a motivational mentor named Sean Stephenson pop up in my head. “Picture the worst case scenario and watch it play out,” he said.
So I began. I pictured rolling onto the dance floor and running over the new bride. She then falls into the groom. The groom flies right into one of the caterers who knocks the cake up in the air. Finally, the cake soars into the DJ who now looks like a very disturbed version of Snow White. Among the chaos I took note of something interesting. My whole family, especially Anna and Jacob (the bride and groom), was laughing hysterically. I thought, if this is the worst-case scenario, then I’m about to have one hell of a time. Sure enough the fear fell away, and I rolled onto the dance floor. Luckily no one got run over, and I wound up having a blast.
The day I came back from the wedding, the side effects of the rehabilitation began to show. My leg grew stronger and my knee more comfortable. With a little ingenuity and a lot of miracle, I rose to the occasion and found my feet once again. Call it coincidence. Call it a medical triumph if you must, but I might like to call it a graduation gift. You see, I don’t believe I was meant to rise until I learned that true love must rise first, for others and for yourself — above condition, above ego, even beyond the physical world. I could not stand as a man until I learned how to sit as one, because value comes from the love you give and the love you witness. My cerebral palsy had schooled me and I came out the other side a better human being.
It’s so easy to notice the gift of momentum that we often miss the gift of slowing down. Humility is a kind of tough lover that can get buried beneath the mediocrity of an ordinary life, but luckily, CP makes having a mediocre life impossible for me. I’m grateful my own humility could teach me a valuable lesson thanks to life gone by, true love, family, and an angry pair of pants.
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