When I was 12 years old I was befriended by a teacher using a wheelchair (the hippest Crip I'll ever know) and was blessed with fundamental lessons in disability rights and advocacy. I had no clue then that my own DNA was already having its way with the bones supporting my central nervous system. We had little contact for decades until we practically ran into each other in the supermarket. My spine had caught up with me and I was using the mart cart. They laughed and said, Hey Dina, you're a Wheelie now! Our friendship has since taken on new dimensions. While I've been aging like a fine wine, so too has my experience with disability. Twelve year old me learned that shit happens. My teacher's spinal cord injury, a college sports incident, was radically life-changing. A fluke. One fell swoop. The way they roll with it (pun intended) continues to support independence and build community for all disabled people.
At a birthday party the other day we had a chance to catch up a little bit. They noticed right off that I was moving differently and I felt their eyes on me, questioning. They rolled up, already knowing I could only see them face on, since turning my head for a conversation is uncomfortable with the new hardware in my neck. It was still the 1970's when we first met. Their hair has gone white now, mine is more salt than pepper. We look into one another's eyes and smile with knowing, with seeing, with witness that being a Crip is a long strange trip.
Its all about the arms now! I exclaim, waving my flappers and clappers in the air. They've been rewired and its a little bewildering. We talk about the kindness and competency of my neurosurgeon. We touch on finding work-arounds when the signals the brain sends out find no receiving handshake. We understand but don't talk about how worried this makes me, since my spinal cord injury is progressive. We marvel at the Crip superpower of remaining adaptable to change. We don't talk about the writing on the wall and the fate of the Americans with Disabilities Act (ADA) and our health insurance if fascists win the next election. Although this too is bewildering.
And then it is time for birthday cake and singing. Little things like eating cake, a small paper plate balanced in one hand with a fork in the other, have become complex. I have to think about it and I have low confidence. I smile to myself as social anxiety bubbles up because it is, of course, a Trickster moment; it all may slide off in a chocolate permanence across my pretty new party shirt.
For many years my legs were the Trickster problem. They might give out or they might carry me farther than imagined, there was no knowing in advance. I learned to keep a stool in the trunk of my car, sometimes a rollater. I parented three children on the fly, developing resources, managing changes, recovering from rough patches and a surgery here and there. Gimping along. Meanwhile, my arms picked up all the slack. If I was sitting I could still cook a three course dinner. I could still fold laundry. I could still dig in the garden. Different-but-doable.
I delayed the surgery on my neck for seven years to put off the predicament I find myself in now. During the 5 hour procedure they relocate muscles and then remove bone before adding in titanium rods and screws and sewing a person back up again. All the little muscles they move are the ones you use to shmear cream cheese on a bagel, itch the top of your head, and change the position of your pillows in the night. I am learning to hold myself up differently and constantly bumping into the Not For You zone. The weight of cast iron pans: not for you. A friend's invitation to pick blueberries: not for you. Emptying the dishwasher, cleaning a toilet, nope! Scooping up a kitty for a snuggle or pulling those weeds in the garden... not for you. After all these years of compromise, fudging with and ignoring reality, now my 5 pound lifting limit is non negotiable.
The central nervous system is a magnificent organization of synapse and fibers carrying signals from the brain to every where else in the body. Some assaults to it are accidental, some are biological, some are just hopeful. My disease is of the biological and unstoppable sort. The surgery on my neck was of the hopeful sort. Maybe we could relieve pressure on my central canal is such a way as to prevent more harm and preserve function. I'd pitched the surgeon a more extensive procedure than he first proposed. We looked at imaging together and he agreed it was sensible, adding with a long sigh, this is going to hurt. And it did. First thing in the recovery room I was aware that I'd have to evolve a new relationship with my shoulders and arms. Joking to my husband that I felt like a T-Rex, my upper appendages were useful from elbow to fingertip. But I did not tell him the next day that my left hand has a new way of clenching and curling inwards and I'd become aware of it tucked up tight against my belly.
Six months into recovery it still hurts and that left paw still tucks in when I am tired. We succeeded in preventing harm and, mostly, in preserving function (even if functioning feels so different). The No zone was predicted and spelled out to me in advance. None of this is a surprise. The Trickster bit is that the labor of living in my skin has become more effortful so getting stuff done entails more accommodation. The places I can take myself are more limited and my energy requires mindful conservation. I am still making peace with the new restrictions and boundaries, still feeling for the edges of my capacity and (winkety-wink) seeing how much good trouble I can get away with.
For a person whose work has story telling and performance aspects, and who has a tendency to 'talk with their hands', learning how to gesture less wildly is a ridiculous challenge. When you express a thing just with words it may come out flat. Add in the motion of arms and hands, the angle of an elbow's flight, the punctuation of a closed fist or open palm, that same story has shape and mass (with maybe some ethnicity tossed in). My rewired arm, sweeping across the universe to make a point more gracefully, does not sail with the same ease it once did. Getting ideas out of my mouth without the expected support of habitual gestures presents an interesting embodiment puzzle. I need to invent a new arm ballet to weave nuance and context with my words.
I put off this surgery for so long because I feared losing the use of my arms and hands. I knew I'd adapt to whatever changes the surgery brought but waited until the risk of doing nothing equaled the risk of quadriplegia from the procedure. I wanted to be able to drive again, I wanted to be able to wipe my own ass. Friends who don't know any better winced that my bar for a good outcome was set so low, but I was fully aware of how much ability is involved in those two things. My extensive pre surgical body-mind preparations aside, nothing could have prepared me for the physicality of having to rewire my arm language. Or for feeling awkward, both verbally and physically. It is unsettling in ways that remind me of adolescence, working so hard to find my own gait and establish a new way of inhabiting space.
This puzzle of finding new ways to carry and move my torso, arms, neck, and head involves a lot more than how I communicate. It takes stamina, forethought, patience, and chutzpah. Proprioception, that float like a butterfly-sting like a bee state of oneself in relation to the physical universe, is a sense-organ we rarely come to understand. And here I am, the clown struggling with re-inhabiting mine. Stairs are different. Taking a shower is different. Driving is different! I have to be more aware of blind spots and radically adjust the rear view mirror for angles my neck can't get to. Smelling my own armpits is firmly in the not for you zone, subtlety thrown to the wolves while that damp bit of shirt is wrangled all the way to my face. I am adapting environments and improvising accommodations. Chafing at hard limits. Finding my way.
The hardest bit is admitting when a simple thing I used to do is now a thing I cannot do. And then (gasp) asking for help. ... And then waiting for help. And then being clear about what will help. And then being graceful about however the help does or does not work out. And then turning around to the next thing on my list and realizing I need help. Again. This is most evident in the kitchen. Because grating cheese is possible, sure, but I will pay. And a few minutes later, getting on the stool to reach for that pot is possible but also an accident waiting to happen. And however flagrantly I'd like to cast off this cautious self, I am as committed to learning a new way of living in my skin as the rods and screws in my neck are committed to fusing with my bones. Me and my hardware, we're in this together.
I came across a photo of myself in 9th grade. A long braid of hair lays across my shoulder and I am playing a bamboo flute. I stared and stared and stared at myself sitting on the ground. At my bare arms, the angle my neck is held at, and my unsupported elbows. So graceful. Effortless. I remember living in her skin. Her skin that is my skin. Those arms that could toss a 50 pound bale of hay onto a wagon. These arms, today, still remember being remarkably strong and capable. Now I have to channel all of that into adapting to where I am, to what is so.
I've been getting out and about more, both for work and for pleasure. A long drive is my happy place, I go slower than I used to, stick to back roads and savor the view. I don't last too long at birthday parties and I don't stay for refreshments when I've presided at a ceremony. I think long and often about the photo at the top of the page here, a rendering of a dissected central nervous system. I think about my arms and all the fine delicate tendrils of being-ness that connect my ideas with the impulse towards motion, firing all the way down to my fingertips, dancing across the keyboard and typing these words. It took a few months to really be able to write again after this last surgery. The signal has to get there, make that handshake, and come back again for the sentences to gather in a cohesive whole. Every character on the page feels like a gift. As for all the unexpected embodiment challenges this life has presented me, please imagine both my arms waving gracefully though the air with a touch of wild abandon. A new arm ballet with nuance and emphasis, because I have this to say: Its such a trip being a Crip!
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