Slugging through Disability

By: Loolwa Khazzoom, Founder, Dancing with Pain

September 4th, 2009 • Living with Chronic PainPrint Print

I have decided to start writing my memories when they come to me. I’ve been waiting and waiting till I have the strength to sit and write my story from the beginning, or to wait until I have the emotional wherewithal to write about a memory from start to finish, eloquently. But I’ve decided instead to go for raw, stream of consciousness, just the facts ma’am. So here goes:

Tonight I got friended on Facebook, by a very cool woman who used to be my contact editor at Seventeen magazine. That reminded me of another very cool woman who was my contact editor at ELLEgirl. Which in turn reminded me that about four years ago, around this time, I experienced a horrific chiropractic adjustment from a practitioner whom I’d trusted up until then.

The day of the horrific adjustment, he was acting very weird. He started “adjusting” – ie, yanking at — me while I was sitting in a chair, when I’d barely finished telling him why I was there. Abruptly, without warning, he went on to adjust body parts I didn’t want adjusted, and he tried to adjust me in a move I’d explicitly told him numerous times not to do. Because I trusted him up until then, and because he’d been one of the most caring practitioners I’d had until then, I didn’t quite register what was going on until it was too late.

By that evening, I was in horrible pain. It only got worse. I ended up bedridden for two months – with what I only later found out was a torn rotator cuff on my right shoulder, along with miscellaneous damage in my left shoulder, right ankle, and neck. Pulling a sheet up to my chin while sleeping was excruciating, never mind a blanket.

But that was only the beginning. Using dance, I recovered enough to take a trip to the USA, where I was scheduled to give a workshops on Jewish multiculturalism and Dancing with Pain (the first time I taught other people my techniques).

One evening, while walking around barefoot in my New York hotel room, I thought I must have stepped on glass. I checked my foot – no glass. I put my foot back down. Stepping on it was still painful. I was positive there was glass in there.

Over the next day, the sensation increased and spread. It became clear that there was no glass in my foot, but something was happening with my nerves. It was excruciating to walk. I made calls to doctors in New York and on the West coast, describing my symptoms. I was told that I might have spinal chord damage, possibly from the chiropractic adjustment a few months earlier.

I was terrified. Spinal chord damage. Would I end up paralyzed? Was my life completely over? I scheduled an emergency appointment with a nerve specialist in the Bay Area (using all my skills to work my way into the first appointment after my arrival in town – instead of waiting a month as they would have had me do) and booked the first flight out the next morning, at 5:00 am.

Meanwhile, being that my survival depended on selling articles, that I was in New York, and that I often get writing gigs when I meet with editors in person, I decided to bite the bullet and go through with my meetings.

As I was speaking with the editor at Teen Vogue, all I could think was, “I may have spinal chord damage. I may have spinal chord damage.” I had the worst time concentrating on what the editor was saying. I clearly looked as frazzled as I felt, because the editor looked at me like a nutjob.

Then I went to meet with the editor at ELLE. I thought I was meeting the features editor. I began pitching all kinds of stories – again, through the fog of the “I may have spinal chord damage” terror  – when the editor stopped me. Turned out she was the fashion editor, not the features editor. Apparently I’d been in such a state while preparing for the meeting, that I’d mixed things up.

I wanted to cry. I felt like a total idiot. The editor looked at me like a total idiot too. Undaunted writer chick that I am, spinal chord damage or not, I immediately switched gears and began freestyling fashion story pitches – Israeli comfort fashion shoes, Israeli fashion designer Yigal Azrouel…

The editor wasn’t interested in any of my ideas. After politely but obviously suffering through a few of these last-minute article possibilities, she showed me the way to the exit. She didn’t bother walking me to the door, which is what editors usually do, but practically bolted in the other direction as soon as she pointed the way.

I left in tears. With this feeling I’d had before and I’d have again – that these people outside my body have no idea how tumultuous my world is, have no idea that something so simple as going up a flight of stairs or just getting from the cab to the door can be a major effort, taking all my internal resources. And somehow, I must function shoulder-to-shoulder with the able-bodied world, on the same terms as theirs, and still rise to the top.

Nonetheless, because people can’t see my disability, the judgments fly – she’s lazy, crazy, bitchy, difficult, whiny, you name it. They don’t say it out loud, but I can see it in their faces, their body language, their tone. It’s an awful slap in the face in addition to whatever disability struggles I’m slugging through.

Anyhow. It was a miserable night. I wished I hadn’t gone through with the appointments. It was worse, I decided, to see an editor when I was not in top form, than it was to not see an editor at all. At a nearby Starbucks, I sat looking out the window, crying, then shelled out more money than I could afford to take a cab back to the Upper West Side. I was so frightened about my future.

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