People with Chronic Pain Cannot Be Shy

By: Loolwa Khazzoom, Founder, Dancing with Pain

November 6th, 2009 • Living with Chronic PainPrint Print

(Me Presenting)

(Me Presenting)

People with chronic pain cannot be shy, especially if we have no outwardly visible signs of disability. Take the example of my presentation yesterday:

I was invited to speak at the Jewish Community Service Professionals of Southern California conference in the beautiful mountains of Malibu. Topic, for those of you who are wondering: “Make Room at the Table: Jewish Multiculturalism in the Global Village of the 21st Century.”

OK I love nature, nature loves me, but chronic pain and nature are, like, serious enemies in some ways. For starters, the land was completely unstable, with mini wood chips and rocks and dirt and all this other uneven chaos strewn about. Fun fun fun for those with ankle and knee sensitivity, like yours truly.

(Participants. In a YURT.)

(Participants. In a YURT.)

Then there were the YURTS. I had to put that in capital letters because I like saying it: YURTS. When I say it, I screw up my face all funny. That’s why I especially like saying it in front of a mirror. But that is not what we are here to discuss, is it.

Yurts are tents propped up on bricks. As such, I have found, they provide hours of entertainment for those with pain in the thigh/groin region. Or more accurately, they provide hours of entertainment for those watching the spectacle of those with pain in the thigh/groin region trying to get in and out of yurts.

And of course, the handicapped parking, never mind the regular parking, had to be a really long f*ing way away (measured in disability feet, that is) from my yurt of presentation choice.

Sittin' n presentin'

Sittin' n presentin'

So here’s how I handled the situation:

  1. I drove right up to the check-in table. Literally. I stopped, like, three feet away from it. I introduced myself, asked where I was presenting, informed the people that I have a disability, and said I would need to drive right up to the yurt to unload my belongings. The woman was totally fine with that and asked that I just park back in the parking lot once I had unloaded. No problem, I thought. And said.
  2. I drove between the tree and the ping-pong table, narrowly slipping through, and on to my presentation yurt. Within a minute or two, I knew I’d be in trouble, between the instability of the land and the height of the yurt platform. So I decided that my car wasn’t going anywhere. No way I was going to walk back – even from the handicapped parking lot – along such unstable ground.
  3. I parked my car out of the way, on the side of the yurt, and stuck my handicapped placard in the window, in case anyone had any questions. Just a few minutes after doing so, when I was in the yurt, the registration woman came over and very caringly said, “You know what? Don’t worry about parking in the lot. Just leave your car here.” “No problem,” I smiled, “Already done.”
  4. After one or two very careful and very slow up-and-down trips, I poked around and noticed that part of the bricks were sticking out. On my way up, stepping on the half-bricks took off the pressure of the climb, so I was fine. On the way down, however, I risked twisting my ankle if I were to step on the brick.  Well it was a start: Half of the entrance problem solved.
  5. As a colleague came over to help me set up (my hero — he brought from his office all kinds of stuff that I’d spaced out on requesting), I mentioned that I was having a hard time going up and down. He immediately offered his arm for me to take hold. And I took it, which really helped. Later on, when he wasn’t there, I asked a random participant, who’d wandered in, if she could come over and help me get down. And I told her exactly where to stand. Embarassment be gone!
  6. I walked over to the office (slowly, carefully, given the instability of the ground) and requested that they find me a big fat brick that could go midway between the ground and the yurt platform. They said OK. While it did take them a while to find one, they delivered it by the end of my presentation. So as I took stuff back to my car, I was able to step up and down comfortably.
  7. During the presentation, my aforementioned colleague did most of the setting up. For the leftover adjustments, I asked participants to help me move anything that smacked of possible heaviness.
  8. I pulled up a chair and sat down for most of the presentation, facing the participants, because standing was feeling too stressful on my body yesterday, what with all the YURT hopping. (Did you scrunch up your face when you read that?)
  9. I asked the last remaining participant to help me carry stuff out to the car — giving him the heavy stuff and taking the light stuff myself.

 And there you have it: An injury-free and fun presentation, thanks to some shameless requests for help. Truth be known, I did feel a bit uncomfortable or embarassed here and there, but here’s the thing: Courage is not about having no fear, but about doing things anyhow. Similarly, getting our needs met doesn’t mean never feeling weird about asking for assistance. It just means asking anyhow.


Ann Gourieux November 8th, 2009

I loved this story.  You are so correct.  We cannot be shy.  Although my appearance when walking (stooped over, hobbling, etc.), reveals a disability, I still get the “looks”.  I just LOOK right back. LOL.

Rebecca November 20th, 2009

Well spoken written!
I’ll take a good example from you while I’m still not as good as I’d like to be.

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