Coping with a string of pain setbacks

By: Loolwa Khazzoom, Founder, Dancing with Pain

May 8th, 2010 • Living with Chronic PainPrint Print

It’s been challenging recently, coping with a string of pain setbacks: I was in the Bay Area for a film shoot, including getting footage of my mom, and we bummed a ride from one town to another, where my mom lives. A friend of mine was driving in our direction at the same time, so it seemed perfect.

I did ask my friend, whom I greatly trust and who is one of the few drivers with whom I feel totally safe, if his friend was a good driver. There are few situations worse than putting my life in the hands of a driver who enjoys initiating anal intercourse with the cars in front or zipping in and out of lanes at breakneck speed. “Oh yeah,” my friend said with confidence.

Certainly in medical cases, I have made a habit of not trusting someone, no matter how well-referred that person comes, until s/he has passed muster with me personally. But I think my level of trust with this friend is so high that I accepted his word.

We piled into a Mustang with a virtually nonexistent back seat, with a whole lot of luggage. Gd bless my friend and the cameraman. To spare me getting a pain flare, they sat with big fat bags on their laps and in their faces, while I had virtually nothing on or around me.

The driver was a “get in whichever spot in whatever lane is moving fastest” kind of guy, and when he was neck-to-neck with a driver and wanting to pass, he would speed up instead of slow down — leaving me internally clutching and praying to Gd for salvation. Then there were the few times the driver swerved off the road, towards the dividing wall in the left hand lane, or into the lane to our right.

I spoke up a few times, asking the driver to slow down or put more space between us and the car in front. But with certain drivers – usually the careening kind, methinks – there is only so much you can play Backseat Driver, especially when you’re bumming a ride, before things get really tense. So I picked my battles.

About half an hour outside our destination, the driver revealed that having the windows rolled up in the front seat (which was funny in a convertible with the top down) was making him sleepy, given the pounding sun, and that was the cause of his swerving activities. So we rolled down the windows, to the protest of the guys in back.

I explained to the cameraman that our safety was at stake, but he couldn’t hear me. The driver then told me that my side didn’t need to be down for him to get the gust of air he needed, so I rolled it up. What ensued was the driver and my friend yelling back and forth over the loud wind, my friend saying he was freezing and the driver saying better freezing than dead.

By the time we were just outside the town where my mom lives, the driver was on a roll, going on and on about how he was such a nice guy, and how he was deferring to everyone else’s requests, but that it’s the driver who should be the one getting his needs met, because he’s the one who needs to drive, and everyone else just needs to go along with whatever he wants. I could tell he was feeling put-upon for real, although his tone was playful.

In a way, it was funny, and at least in terms of the driver not falling asleep, it was also true, so I laughed along a bit, with reservation. By the time we were in the outer limits of the town, I was praying to please please make it to our destination in one piece, while the driver was more fervently into his monologue about how he needs to ignore the yammering of those not in the driver’s seat.

We were one block away from our destination without incident, when the driver passed the turn onto the street where we were heading. At the next intersection, he tore a hard right, realized the street was a dead end, and zoomed up one of these stupid sidewalks that try to pass as driveways (with a slightly soft edge but no groove), making a T turn into a driveway.

I saw it coming. I saw it coming but didn’t say anything, because I get tired of micromanaging and because the environment was not friendly to speaking up. I was hoping that maybe this time, if it wasn’t an issue for the driver to catapult onto a sidewalk, it might not be an issue for me.

Wrong. It was an issue for everyone but the driver. “Slow down!” we all screamed, as the driver zipped around and headed back down the sidewalk. “Everyone in the back seat shut up!” he yelled, seriously yet playfully, as he catapulted us back down in a jolt.

By the time we reached my mom’s apartment one minute later, I knew I was in trouble. Fifteen minutes after the jolt, my body was a mess, everything in pain up and down my spine, in my neck, and in my head. We had one hour to do our filming, then the cameraman had to bolt out of town to catch a plane. But by the time I was well enough to nominally function, we just had 20 minutes for the shoot.

Fortunately my mom has honed her energetic powers and is a great healer. So once the film shoot was over, she got to work; and within about 30 minutes after the shoot, I was more or less pain free.

But then a week later, when I taught the first of three Dancing with Pain classes at a studio back home, my entire body fell apart just a few hours after I’d hauled the portable dance studio equipment up and down the stairs. I didn’t initially make the connection to the driving incident, and I was left scratching my head about why my back suddenly went out, when I’ve been doing so well recently. Only after my friend revealed that he was still having back pain from our trip up and down the sidewalk did I understand it had destabilized my body, leaving it prone to reinjury.

It took another couple of weeks of energy healing, dance, and massage to get my body back into shape. Then I went to the dentist for a nightguard fitting, and long story short, I ended up with an exacerbation of old TMJ issues. My mom did some distance energy healing on me immediately after, and within a few hours I was fine. That is, until that night, when my best friend’s two-year-old pulled some maneuver (I’m still not quite sure what) that long story short, socked me in the nose.

Not only did the nose sock hurt like hell and retrigger my jaw pain, but it also triggered intense pain in my ear and eye, from older injuries – caused by a doctor and dentist respectively. Suffice it to say, I laid low for the next 24 hours. And advised my friend to enroll her toddler in a martial arts class. That kid has a serious left hook.

Anyhoo, things had calmed down by this weekend, when my pot-smoking, trance-blasting neighbor took to slamming the door every ten minutes — sending a reverberating jolt up to my ear and setting my head back on fire. Then yesterday I went to get a desperately-needed haircut. When the shampoo gal took me to the basin in back, I was expecting a luxurious experience – especially considering that the chair had an electric massage thingy built into it. But it ended up hurting like hell.

She only put a flimsy towel over the porcelain, and there was this contraption that came down over my shoulders, making me feel wedged in. It was all very uncomfortable. I asked if she could put something else on the basin, but she said the towel was all she had.

That’s where I needed to stop everything, get up out of the chair, and look at the situation myself. Instead, I just said OK and tried to make do – rolling the towel into a little ball under my neck. What ensued was a struggle where I kept moving up and down on the chair and fidgeting with the towel behind my neck, trying to get comfortable, while the shampoo gal kept protesting. “It’s impossible to shampoo your hair when the towel is like that,” she would say.

Finally it got to be too much. It was like being tortured instead of pampered. A point came where the combination of the porcelain hitting the nerve on my neck, coupled with the massage balls pushing in on my upper back, just sent me into a spasm of intolerable pain. A few times leading up to that moment, I asked the shampoo girl to stop and said I needed to get up. “But you can’t,” she said, “You’ll get all wet.”

Finally I just jerked up and out of the damn basin, and because there was no preparation on her part – ie, putting a towel over my shoulders — I got completely soaked all over my back. “I can’t do this,” I said. “I’m in pain.” “But I haven’t finished rinsing your hair,” she protested. Really?! This is the primary concern here?

“It’s hurting me. I am in pain,” I repeated. I looked around for a solution. I saw a big fat pillow and lifted it, suggesting we use it, but it was too big. “There are only towels,” the shampoo gal said. She then took a big, folded towel and laid it on the basin. Why the fuck she didn’t do that in the first place is beyond me. I lay back down, and it was delightfully comfortable.

In other words, the entire incident was completely unnecessary. I felt angry at myself for not stopping it from the word go. I also felt angry at the shampoo gal for not having a problem-solving or, I might add, customer-service attitude, but rather, for insisting that I conform to her way of doing things.

And isn’t that how it usually goes: I’ll come in for a treatment, speak up about how it is not working for me, and be met with some shade of accusation and condemnation for not fitting into the mold, instead of being met with accommodation — ie, with the practitioner tailoring the treatment in such a way that it will actually help me.

Anyhow, next the shampoo gal was doing treatment for dry hair, rubbing my scalp with product. I asked her to be more gentle. She kept going at the same pressure. It was hurting, especially considering that my head was sensitive from the neck/basin drama. I asked again for her to be more gentle. She still didn’t change the pressure. “Stop,” I said, putting my hand up. “I need you to be more gentle.” Third time was a charm, and she responded. But again: Why so much struggle?

As I sat under some space agey hot drier thing for the second half of the treatment, I was in quite a bit of pain in my neck, upper back, and right side of my head and face. And I was really angry at myself. I called my mom. “You’re good at this with doctors now,” my mom said compassionately. “This is a different circumstance. It’s a hair salon. You didn’t come in expecting to need to use the same tools.”

Later that night, after I also didn’t protest when the hair dresser had a go at my eyebrows, I was sitting on my living room floor, talking to my mom, feeling terribly frustrated with myself. “Loolwa,” my mom said, “does it occur to you sometimes that you are human? You advocate for yourself a million more times than most people. But you can’t be perfect.”

I think my mom is right. When we have chronic pain, hypersensitivity, and disability, we have to butt heads with the system a million more times than someone who fits the mold of expectations. And I do a damn good job advocating for myself, but I get tired. And taken by surprise. And sometimes I just don’t want to have to be micromanaging yet again. I just want to sit back and relax. It’s such a drag to have to be hypervigilent 24/7, especially in places where we just want to go to chill.

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