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Saturday, July 19, 2008

Disabled people should be neither seen or heard


I made a decision that was tough for me last week. And so, of course, G-d in G-d's infinite wisdom decided to test me on it this week. I was on the phone when a friend when I brought up davening (praying) in a synagogue. Davening in a synagogue has been a tough issue for me ever since I developed fibromyalgia. The noise aggravates my pain. Holding a siddur in my hands for a long time aggravates my pain. Looking down at the siddur aggravates my pain. The oh-so-uncomfortable seats aggravate my pain. The...okay, you get the picture?


"So, I went tonight to Maariv (the evening prayer service) and I just stood there in the back with a friend. I didn't daven. I couldn't even hold a book in my hands. I just stretched and listened," I said sheepishly.


"What's the alternative?" he asked.


"The alternative is not going at all. A shtender might help." But, of course, I haven't even brought this up to the shul (synagogue) at home, why would I bring it up at the shul where my husband is interning? Though, a shtender would help a little bit.


"Then, I don't think it's a bad idea to go and listen."


"But what will people think? There's the Rebbetzin (rabbi's wife) stretching. There’s the Rebbetzin doing downward dog...."


"Why are they looking anyway?" he interrupts. "It doesn't matter what people think. What will G-d think? That's what really matters."


My husband gave his first drasha (sermon) at the shul this morning. I woke up for it groggy but with an attempt at urgency, shaking myself from the medication that helps me sleep so blessedly. I readied myself with an eye on the clock but utterly sure that I would miss it. Please G-d don't let me miss it, I said out loud as I searched for the second of a pair of little black slip-on socks.


When the clock hit 10am, I groaned. In a race against the clock, I threw on the shoes I promised myself I wouldn't wear again. I bagged the rice I had made for the lunch we would be having at a new friend's house. But as soon as I threw the bag over my shoulder, I realized my mistake. Pain shot through my arm, through my neck and then throughout my entire right side. The beast had been awakened.

I slid into a seat into the back. And I stretched. And stretched. And stretched. I only cracked open a siddur to grit my teeth through the pain to daven the Amidah.


Soon I was joined by some member of the congregation who made the mistake of touching me. I squealed loudly in pain. They thought I was joking and one reached out again to touch me. My eyes began to well up with tears. I decided to talk fast. I explained that I had fibromyalgia and that one of the symptoms happens to be an extreme sensitivity to touch in the areas where I am feeling pain. I was startled the congregant took this information and decided to help by giving me some pointers on stretching and suggested deep tissue massage which had helped her with pain the past.


My husband gave a great speech. And it should have been a great day at shul. But then someone came up to me to tell me what my place in shul should be. Apparently, some congregants had caught me stretching throughout the service. Why isn’t she davening (praying)? Why does she keep stretching? And so one of those people, one that actually knows I have fibromyalgia, approached me.


I was told that I was a distraction. (Hello, I sat in the back row?) I was told that when I’m in pain, I should sit through my husband’s speech and then LEAVE. Immediately. That I shouldn’t be at shul if I can’t participate in the davening. That, basically, all eyes had been on, not just on my husband, but me. And that I had been found EXTREMELY lacking. And the only way I could correct the situation was to never do it again. “It’s not like you are in a wheelchair. I mean, if you were then it’d be different.” If I were, then I would have permission to stay. “But because you look healthy, I mean you purport to be like everyone else and do things just like everyone else….” Ah, yes, the plight of those of us with fibromyalgia summed up. LOOKING healthy separates us not just from the handicapped but also from the more often reactionary able-bodied. I listened to this for 15 minutes, breaking in to repeatedly offer my point of view: “I disagree.”


Sometimes, I wish I could tattoo “fibromyalgia” on my face. I wish I didn’t have to spend so much of my life explaining it. I wish more people knew about it. I wish more people understood the sacrifices I have had to make. I wish people would see me as a disabled person. But I realized today that I’ve got it wrong. I want people to see me as a person. A person who has special needs. A person who deserves respect. A person who doesn’t need a wheelchair to get it.

9 comments:

  1. Anonymous10:17 AM

    I have fibro too, and I use a cane sometimes to help with it, because my knees are particularly bad. But there are times I bring the cane even when I don't need it, because I find it sends a clearer message than anything else. I've been kicked off of disabled seats on buses when I don't have it. I hate that people are so insistent that only people who look sick are sick, but there's little I can do to change that. So I just look sick.

    Congratulations to your husband on his first drasha.

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  2. Anonymous6:23 PM

    i can't believe how messed up this is. so people who are sick just
    shouldn't show up? and meanwhile if you're sitting in the back row how can you be distracting anyone? seems to me like they should have been facing forward?

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  3. Anonymous8:47 AM

    Aliza,

    This is just so unfair.

    It's funny though . . . I have barely been to shul for the past year because to feed Eli we use this little electronic pump. It beeps and clicks and even though I know, and the rabbi knows, that it is pikuach nefesh, I feel weird about having it in shul.

    It's just not fair. None of it. And I can't believe people would presume to come up to you afterward.

    Sending you an e-hug (they are painless . . . )

    Love,
    Danielle

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  4. What a great post. I have been a prisoner of Fibro and Atypical M.S. for 13 years now and it never gets better.

    People see me as fat (I have PCOS also) and I don't want to explain to everyone that I am on meds for pain, for adrenal fatigue, for cardiac issues and have had numerous surgeries which account for 98% of my weight.

    Invisible disabilities are the worst. I have a cane but I hate using it around my children because it causes them anxiety. I sit in the back at shul otherwise I'd distract everyone when I have to get up and walk or stretch because of some spasm or intractable pain.

    Keep talking about it. A website that might interest you is:

    www.butyoudontlooksick.com

    FibroHug!

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  5. I have had friends who suffer from fibromyalgia. It sounds like a very, very painful illness. Thanks for informing the rest of us on how difficult it can be.

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  6. Have you tried acupunture/Chinese medicine at all? I'm not saying it's a cure, but it has helped someone I know with fibro immensely.

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  7. Accupuncture has helped me in the past. And by the past, I mean when I had much better healthcare and it covered at least some portion of it. My new health insurance unfortunately does not cover it at all. Accupuncture is really incredible.

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  9. Thanks for your posts, everyone. Barbara, hang in there.

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