I’ve said before that cerebral palsy (CP) isn’t progressive but it kind of is. While my experience is quite different than that of a person with a strictly degenerative disability, CP has proven to be an ever-changing experience and living in a disabled body requires quick adaptation to change. That’s something I wish had been an asterisk at the end of all the cheery paragraphs announcing that CP remains static over time. The cumulative impact of 26 years of spasticity is… noticeable. My muscles are engaged in overzealous pulling on my bones 24/7 in a series of what I call neurological drunk texts. And so,bones get pulled in weird directions, joints get creaky, and you find yourself thinking that if you went on a waterslide like you did at age 9, the remains of your aching spine would be floating somewhere in Hershey Park. CP quite simply is not the same from year to year or decade to decade. My once bendy knees now frozen at a barely right angle could tell you that.
I don’t see my disability as the enemy and I know that it is deeply wrapped into who I’ve become. But living in a disabled body is exhausting. I often hesitate to admit it, for fear that a society seemingly allergic to nuance will then view my entire existence as horrible. But there, I said it. This is a tough gig. My body and I are constantly getting to know each other again. I have never seen this quite as plainly as I have this year, after having three surgeries in 11 months. Most recently, my right hip was reconstructed after trying to Houdini its way out of the socket. In order to avoid several unpleasant muscle lengthening procedures, my right femur was slightly shortened, leaving it a little more than 2 inches different in length than the left. Over the last few months, I have had to recalibrate my gait, welcome a metal plate into my bone, and begin exploring the world of shoe lifts. At present, until I finish shoe shopping, my only modified sneakers have an all-over colorful dog pattern that enthusiastically clashes with my clothes on a regular basis.
All of this is to say that healing is an eye-opening, soul-opening, non-linear process that is humbling beyond words. After placing my whole self in so many clinical hands, so many gloved strangers who poke, prod, stretch, examine, and study my very being, it has been its own spiritual project to remind myself that this body still belongs to me and me alone.
I have lain awake for many nights, angry at my body for getting so twisty, so inflamed, so reminiscent of a grand old structure with a sign that says “closed for repairs.” I have spent just as many begging for its forgiveness. Sorry for the tubes and the IV pokes, for the dripping condescension of nurses’ aides too impatient for its slow, wobbly movements. But the miracle of this very human disabled body is it never asks for forgiveness. It shows up for work every single day, cradling my spirit and humming I love you even when you don’t love me. I try to pause for at least a moment each day to let the magnitude of that devotion sink in.
And then I remind myself that I am not a fraud for saying I am proud of this body and simultaneously having flashes of resentment, grief, and impatience. Great love takes work.
And healing continues long beyond the moment an incision settles in to a bodily constellation of scars.
Adjusting to a changed disabled body is something of a rebirth.
The first time we are born, we often ask later who was in the room the moment we came to be. I find myself considering that same question as I am born again, getting to know my too-short leg. My puffy stomach with the almost -magic red hole that lets me pee on my own for the first time ever. The bulge where my infusion pump works to calm the omnipresent buzz of spasticity.
Who was in the room?
The simple, literal answer is a lot of doctors and physical therapists. A lot of healthcare gloves and chuck sheets and that young man in the rehab hospital who spent the night shift scanning bladders… like the tooth fairy, but weirder.
The bigger, metaphorical answer is one that leaves me full of awe.