My Pain Levels Are Jacked

By: Loolwa Khazzoom, Founder, Dancing with Pain

September 30th, 2008 • Patient AdvocacyPrint Print

Today is R’shana, also known as Rosh Hashana – the Jewish New Year. I meant to be attending an egalitarian Sephardic (loosely referring to Middle Eastern Jewish) service that I was totally excited about, but my body feels like crap, my pain levels are jacked, and all my anger is flared about the fucked medical system that led me to this physical state.

I am pissed about everything: the incessant pain in my back — the result of being electrocuted by an MRI (vehemently denied by the radiation center), the dry eyes I now have as a result of a liquid nitrogen splash when I went in for a wart removal, and all the rest of the fallout that I’ve been left to face — with no medical support whatsoever, from a health insurance company that charges me over $500/month.

(Did I mention it was the medical system that caused most of my pain-related conditions in the first place?)

The health insurance company tells me I am not qualified for physical therapy, because I’m disabled (and therefore will never, according to them, heal – despite the fact that I improved by leaps and bounds during a mere handful of physical therapy sessions a couple of years back), while social security tells me I’m not disabled, and therefore that I’m unqualified for a special medical plan, because I’m able to bring in more than a few hundred dollars a month.

Tell me something: If a person is not able to bring in more than a few hundred dollars a month, how can she be expected to have it together enough to apply for social security disability? I mean, she’d probably be living on the street, near dead. And then she’d have to wait six months for the paperwork to kick in. Does one really have to sink to that extreme of a low before the social system recognizes that something is amiss?

I decided not to push myself to go to services today, but rather to use the day to check back in with my body. I’ve taken the bull by the horns with this move to Southern California, diving head-first into my new life and my new job. I still don’t have in place the team of people I need to help me function – schlepper, house cleaner, body worker, primary care physician – but somehow I’ve been managing, despite the challenges and frustrations. 

Oh yeah.  And despite the fact that I live on the third fucking floor, with no elevator.

I’ve even been driving every day (welcome to the bottom half of the state), despite the fact that it can scare the bejesus out of me, and despite the fact that I’m now sharing the road with freaks who put Bay Area road rage to shame.

Yesterday, for example, someone careened around from behind me in a 30 mph zone, crossed over the double yellow line, and raced down the neighborhood street at 60 mph, only to squeal into his driveway three blocks down. “Maybe he had to pee really bad,” a friend of mine suggested.

While I’ve been proud of myself for taking things in stride, I’m feeling worn down.  I need help. Hell, I need help finding that help. Just thinking about putting a new team together is exhausting, because I have to go through the process of screening a million people.

But most importantly, I need to return to myself, my body, my spirituality, my faith in healing.  I need time to nest, to poke around my neighborhood, to find safe bike paths, to get out into nature, to dance.  And I need to get back to this blog.  Because when I don’t release my thoughts and frustrations into the universe, they get trapped inside and shut me down.



Comments

Aliza Hausman February 16th, 2010

You took the words right out of my head. Also disabled but not “disabled enough.”

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