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Today is my birthday. I feel as though I should write something birthday related on my birthday, but really wasn’t sure what. I thought about writing about age-ism, or about reflections on my life thus far.

Really, though, this birthday has made me think a lot about my 21st birthday. It was my first birthday party after being diagnosed with fibromyalgia, and I was (am?) still adjusting to life with the “disability” label. I’d just applied for Supplemental Security Income. It was difficult for me to socialize much, as a lot of my friends were in other states or simply outside the distance I could comfortably drive.

It was so amazing to have a night with friends, to really feel surrounded and supported and loved. We went to a drag show at a local bar. It was exciting to be able to get into a 21-and-older establishment, and to order an obligatory alcoholic beverage. I had fun tipping all the drag queens, and they singled me out for having a birthday.

I know that people usually don’t like the whole have-everyone-at-the-restaurant-sing-a-song thing, but I really enjoyed it that night. Basically, a drag queen pie-d me in the face with a whipped cream pie while my friends laughed and took pictures. That probably sounds horrible and humiliating, but I actually felt…normal. Like a human being, instead of some fragile, trembling creature who was afraid to venture out of the house for fear of pain.

I was a bit worried about having a pain flare from the chairs in the restaurant. They were plastic patio chairs, and not ergonomically designed at all. I sat in them for four hours or so, and didn’t get up to stretch. My doctor would not have been pleased.

Imagine my surprise when I got home and found out that I wasn’t in pain. Anywhere. I usually have some sort of “background noise” of pain that never really goes away, even on my better days. My shoulders ache, or my hands are swollen. Something like that. For my 21st birthday, my body decided to give me some time without pain. It was incredible.

I decided I would use my new energy and pain-free body to do something “productive.” I went to sort and clean and organize, and soon found my body brought back to earth and pain. I learned an important lesson. If your body is feeling good, savor it. Experience that moment. Cleaning can always wait until another day.

When I was in the 3rd grade, my teacher gave the class an exercise. We were given big strips of paper with the words “I can’t…” written on them. My teacher instructed us to fill them with things we thought we couldn’t do. My friend and I gleefully filled every centimeter with things we couldn’t do: fly, do algebra, dig to China, speak French…Our teacher then had us put the list of things we “couldn’t” do in a shoebox “casket,” which we ceremoniously buried in the schoolyard. She told us that limiting ourselves with what we couldn’t do created a self-fulfilling prophecy.

Years later, I got a similar message in group therapy. According to the psychologist there, your brain doesn’t focus on things like “no,” “not,” “don’t,” etc. So if you say something like, “I won’t commit suicide tonight,” your brain actually hears, “I won’t commit suicide tonight.” (A more effective way of framing that might be, “I will stay safe tonight.”) Basically, another example of the way you think about yourself determining how you will be.

People with physical or mental limitations are already coping with the effect of those physical/mental limitations (be they chronic pain, mood swings, side effects of medications, or what have you). Empowering yourself through the way you think and speak can improve quality of life and even improve symptoms.

Why is it, then, that our country’s [for me, the U.S.] disability support system focuses solely on what you cannot do? Determination forms evaluate how well you can function in terms of tasks in your daily life: cooking, driving, getting dressed, etc. I remember that when I first filled out one of those forms, I looked it over and though, “Wow, I am really disabled.” (This train of thought eventually fed into the pain/depression cycle.)

Positive thinking is left by the wayside as people with disabilities must pathologize themselves to get basic support systems that they really need. (Without Medicaid or some other form of insurance, I would have to pay $500 a month for medications.)

Our disability system is oriented towards paying the least amount of money possible to those who are deemed completely unable to support themselves. It’s a grudging, “Well, if you jump through all these hoops and prove you really need it, I suppose we’ll give you some money.”

Standard neo-conservative (and even neo-liberal) lingo also rails against those who “take advantage of the system,” “subsist off of government handouts,” and others who are just “lazy.” As though the limitations of disability are worth getting under $8,500 a year and jumping through the aforementioned hoops.

Meanwhile, the system has no trouble allocating roughly half our budget to military spending.

The stimulus bill provided a one-time payment of $250 to each SSI recipient. The bill also allocated $759 million (for fiscal year 2010 alone) for “continuing disability review” (CDR). CDR is basically a program that checks to see if people on SSI are still eligible. “Are you still disabled?” I recognize that this is an important question, but I am also troubled by a report by the Social Security Administration that asserts that, “Estimates continue to indicate that SSA will achieve a sav­ings in Federal SSI payments of roughly $10 for every $1 spent conducting additional redeterminations above our base workload volume.”

Our health care system if fundamentally broken. For gods sakes, people go bankrupt trying to pay their medical bills. I suppose it’s no surprise that the system for providing disability benefits grudgingly gives support only to those who are “most deserving” and “completely unable to work.”

Meanwhile, the determination process forces applicants into self-defeating and negative self talk. The application process can ultimately damage one’s self-worth, recovery process, and mental well being.

You may wonder, “What’s a better system?” How about a more nurturing and supportive system which provides a social and economic safety net to all individuals, regardless of how “worthy” they may be. Don’t hold your breath. I’ll keep hoping for and promoting a more compassionate and humanistic approach.

Note: I’ll try not to talk politics all the time, but I felt really passionate about this particular post.

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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