Sunday, October 12, 2008

Neither Here Nor There

I think almost everyone has found themselves in a classic catch-22 situation (the term comes from a novel of that name by Joseph Heller). It seems no matter which option is chosen or excluded, we find ourselves right back from whence we started...often between a rock and a hard place. The more we try to extricate ourselves from the situation, the more deeply enmeshed we find ourselves.

As I've discussed on this blog before, I've been diagnosed with Mixed Connective Tissue Disease (MCTD) and, more recently, Fibromyalgia. Both -- individually and in combination -- can be best described as conditions in which the body attacks itself. The symptoms are hard to describe to others because they are so widespread and can involve different body systems. Flare-ups may last anywhere from a few days to months on end.

Initially, my symptoms were mere annoyances, but, as I've aged, each has become more pronounced and the periods of remission far shorter. It seems now that each flare-up brings on a new symptom that I had not experienced previously.

To offer but one example. A few weeks ago I awoke to find the entire right side of my face was swollen with an odd looking rash and a large pustule in the corner of my lower right eyelid. Over the course of three days, the swelling intensified to the point that it was affecting the vision in my right eye. Upon awakening on the fourth day, the whole thing had magically disappeared as if it had never been there at all.

This is my life now. Weird maladies appear from out of nowhere, increase in size, duration or severity and then...poof...they're gone. It is because I never know when the next flare-up will strike, how long it will last or how many body systems will be affected, the idea of normal employment has necessarily been jettisoned.

And this is where my own version of catch-22 enters.

Despite the fact that government doctors have verified that I suffer from MCTD, fibromyalgia, Klinefelter's Syndrome, Legg-Calvé-Perthes Disease, and degenerative disc disease, they have concurrently decided that I do not meet the legal definition of permanently disabled and have thus denied me benefits from Social Security Disability and a similar state-based program.

However, for the last year or so I have also been receiving services from the Washington State Division of Vocational Rehabilitation. Last week I was asked to attend a meeting with my Voc Rehab Counselor. At the meeting, I was informed that a decision had been made to CLOSE my case because they had determined that I was too disabled to benefit from their services -- helping disabled people find full or part-time employment.

So, here's where I find myself: Disabled enough that a government agency, charged with helping disabled people find employment, says I'm too disabled to meet their criteria, while two other government agencies tell me I'm not disabled enough to meet their criteria.

Maybe Joseph Heller should write a book about me.


  1. Hi Trey,

    I feel really guilty about critiqing your "unbiased" blog as much as I did. I now sense some of the pain you are/have been through in your life. I kinda felt that you didnt make proper distinctions between intentional 'unbiaseness' and deliberate propaganda. Anyway Trey we all have difficult people and situations and as one human being to another I salute you and not only that; I wish you well in general. You are a great champion in my eyes for your honesty.


  2. ummm i meant -"unintentional unbiaseness". note to self: must learn to use spellcheck before posting... "critiquing" and not "critiqing".

    oh the incredible humiliation ouch

  3. no wait I really did mean intentional unbiaseness... dyslexic moment

  4. Hi Trey,

    I was serious when I said I admired your honesty btw..


  5. Well, that just sucks the big wet noodle :-(

    -- Robin

  6. It sounds like the government doesn't want to spend money . . . on us. You need to tell them you're a billionaire.

  7. Jon,
    No offense taken. Critiques are always welcome. How else can any of us learn to view things as others view them?

    Now there's an idea!!


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