In recurring dreams I walk. I stroll, I climb stairs, move around like other people -- and then I suddenly realize I am on my feet, and I panic. Where's my wheelchair? How long will this dream state of grace persist before my mind remembers that my legs don't work any more? I'm about to have a Wile E. Coyote moment: I've overshot the cliff edge, so to speak, and reality is about to intervene and send me plummeting. Such is the speed with which I have become effectively paraplegic that my dreaming mind can't keep up with events.
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I have syringomyelia. It's comparatively rare, afflicting approximately 70K people in the US. Before the advent of Magnetic Resonance Imaging in the nineteen sixties[1], there was no accurate way to diagnose it except by eliminating other possibilities. Its sufferers were sometimes accused of psychosomatic hysteria, much as fibromyalgia sufferers are today. But now neurologists can view the phenomenon, via MRI, just as clearly as an x-ray reveals a broken arm. Radiologists and voyeurs can see the scans of my syrinx (which is about 6 or 7 inches long, from T6 to L1) here.
If you have cancer, you have a tumor: if you have syringomyelia, you have a syrinx, a hollow place somewhere inside your spinal cord. It might be a bubble, like a cyst, or it might be long and thin, as mine is, like a reed. The name comes from the Greek, from mythology. Syrinx was a water nymph. Desperate to evade the pursuit of lovestruck Pan, she called to the river for help, and the river obligingly turned her into reeds, whereupon a heartbroken, Pan fashioned the reeds into the first panpipes. Debussy wrote a ravishing solo flute piece about it (link takes you to an actual performance of the piece).
There is no cure. The syrinx fills with spinal fluid, causing the spinal cord to swell and bear on the nerve bundles that surround it within the rigid confines of the spinal column. This causes nerve damage, a cloud of neuropathic symptoms dependent on the location of the syrinx. There is an operation that creates a shunt to drain the syrinx, but this is a palliative, not curative measure, and the success rate is about 50%. You can't operate to remove a syrinx any more than you can operate on a doughnut to remove the hole.
Syringomyelia is most commonly congenital. Or it might be caused by trauma. Or it might be idiopathic, which is medico-speak for what the fuck. My syrinx is either idiopathic or congenital, which means I made it through nearly 60 years of a very athletic life without a single symptom. According to one doctor, if my case were the result of trauma, I would have to have fallen out of a third-story window and landed on my back -- and I think I would have remembered this event! I fell off a lot of horses in the course of a career in equitation thirty years ago, and took my share of falls and bruises during ten years of Wado-Ryu karate-do, but never suffered a single neuropathic consequence. Completely idiopathic. What the fuck?
How It Happened
At the beginning of 2008 I was fit, working two jobs and hoping for one of them to become permanent and provide health benefits. I had a bum ankle earned in karate, so, when that foot began to play up, I consulted an orthopaedic specialist, bought the prescribed orthotic inserts and carried on with life. The occasional fall was inexplicable and embarrassing, and the bouts of numbness and tingling were cause for concern, but I thought I knew what was wrong and that I was dealing with it.
Everything happened at once.
I lost my job with 24 hours' notice as the state suddenly clamped down on its budget in November, and even though I drew unemployment I knew I was adrift in a serious economic downturn. By mid-December I was experiencing periods of weakness when I could hardly lift a foot off the ground, or when my hips refused to hold me upright. These episodes would pass after 5 or 10 minutes and I would carry on, still convinced that my ankle was messing up my muscular and skeletal equilibrium. By Spring of 2009 I had collapsed while doing a stint of temporary work and had to stop driving because I had lost proprioception below the knees.[2]
When my neighbor drove me to hospital for my first MRI I was a mess of bruises from the shoulders down, from careening into door frames or banging into things. I never knew when or where that dreaded heaviness would invade and drop me to the floor. It happened in the middle of WalMart, at the doctor's office, even when I tried to get off the narrow bench of the MRI machine. My house was an art installation of chairs, all positioned so that I could rest after walking across the room. The bathroom was a death trap. Worst of all (for my state of mind), my symptoms were very similar to those of my mother, who had died of ALS, Lou Gehrig's Disease. I had watched her die and knew it was a hard way to go, and I was terrified. When my diagnosis came in, it was like an anticlimax -- "Whew, at least I don't have ALS! I wonder what a syrinx is?"
At the time of the MRI, I could stagger or toddle a limited distance, but after another few weeks I was falling so often that there was no alternative but the wheelchair. By November of 2009 I could no longer stand up, let alone walk.
Physiologically, nothing changed much after that. Today I have paraesthesia, patches of numbness interspersed with a few normal areas and other parts that feel like a mild case of shingles. And I'm practically paralyzed. I can twitch or move some muscles, while others are inert. From the waist up I'm symptom-free. I've stopped waiting to get better and have begun adapting my environment and my attitude to living with how things are.
I had lived in England for roughly a dozen years and had come to take national health care for granted. Even after I came back to the US and got a job I never gave the matter a thought until the day when I was between jobs and was diagnosed with cervical cancer. The operation cured me, but I was stuck with a $55K bill that took seven years to pay off. When I went on to self-employment I discovered that I was effectively uninsurable, that cancer was a pre-existing condition even if it was gone, and that most insurance companies wanted outrageous monthly premiums just to provide limited coverage. And so I carried on under the Grayson Rule, "Don't Get Sick." That worked until 2009. I was recently awarded disability, at last, and am starting to shed the stress of financial uncertainty, but, as a newbie, I have to wait before I'll be eligible for Medicare. Meanwhile, if I can qualify for medicaid, I can commence physical therapy. And get a spiffy new wheelchair.
So. Farewell then, legs.
It's hard to find the balance, in this narrative, between giving an impersonal account of the timeline of my neuropathy, and conveying the feelings with which you watch your own body become strange to you. Sometimes I feel as if I have been put in a wheelchair-cage, from which I am obliged to look up at everyone else and forego hugging (let alone romance). And sometimes I feel as if I have become a sort of centaur, human from the waist up, something on wheels from the waist down. The best times are when I'm out of myself, so to speak, wrapped up in doing art or reading.
I can't thank my neighbors and friends enough for the way they stepped in to help with shopping, post office errands and the like, but, without insurance and access to further medical assistance, I have had to figure out how to manage this new life by myself. I'm proud of the fact that I only had to call the sheriff's office twice for someone to come and pick me up off the floor. The floor is my enemy. The transfer board and picksticks are my friends. Alcohol and stress and anything that interferes with mindfulness, enemies.
I've been self-reliant practically all my life, and it's been hard to learn how to ask for help. And for the dumbest things! Could you change the wall calendar to the new month for me? Would you mind knocking down that spider web, it's making me nuts. Will you go out to the chest freezer for me? I need a loaf of bread. Thanks. And here's the thing: people don't get to earn grace unless you let them give you a hand.
One final thought: I'm glad I didn't know about the syrinx (assuming it to be congenital) before it came to life and brought me down. I've lived an active life, living and working as far away as Corfu, and I never would have been allowed to do any of it, never been allowed to take those chances and have those experiences, if the syrinx were a known factor.
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1. According to Daniel Levitin in his book This Is Your Brain on Music, MRI technology was largely developed by EMI with funding obtained by the sales of Beatles albums. Imagine!
2. Proprioception is how you know where your body parts are and what they're doing without your having to look. That's how you can reach for your coffee mug and raise it to your lips without having to redirect your attention from the computer screen, or how you move your foot from accelerator to brake and exert the right amount of force to control the car.
The picture at the top is a detail from the first in a series of computer-generated images by me, titled "Wheelscapes". I used Poser 7, Bryce 6, Painter 7 and Mojoworld Pro 3. The wheelchair model is by someone in England called ziggie and was obtained free from renderosity.com. The whole image is viewable here: be warned, it's about 145 kb, 1200 pixels wide.