My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Monday, May 23, 2011

Description that evades me.

I have brown hair and brown eyes. I am short and a little overweight. I like dogs even though I have cats. My political beliefs lean towards liberal. I am Caucasian. I am a US citizen, born in Pennsylvania. I rarely get dressed up and hate wearing heels. I could go on but you have a fair idea of me from that description. Am I leaving anything out?

Oh. Yes. The dreaded "D" word. The word I try never to use. I am disabled. Why is that so hard for me to include? (As I write it my breath catches in my throat, I swallow, hard, my stomach clenches up.)

I hesitate whenever I fill out a form, any form, even medical. All the answers come easily: phone number, address, name, date of birth. Then the one that stumps me. 'Occupation' Oh no. I have to write disabled. There is no choice with the answer, but it is only very recently that I stopped putting the parenthetical extension,(at present).

An earlier post refers to the difficulty I have when talking about the pain. My fingers start to hesitate at the keys even as I write the words here.

Pain caused very weird things to happen. Brain surgery was for someone with tumors or something horrendous. It was an astonishment to me that 'only' pain brought the neurosurgeon into my hospital room and into my brain. Disabled also has its very specific niche, one that does not include the foreign invader into my life called trigeminal neuralgia, the face the only part of my body involved. Disabled means the body.

I discriminate not between mind and body but rather above the neck and below the neck. My disability does not stop me from walking, moving, or physically being able to do the things a body needs to do. It never has, not in the sense of inability to use my limbs and get around. My body always was ready to go. It was the face that said "No. there is a breeze, or cold, or wind, or rain, or, or, or." I think being 'able', absent the pain, has always made it harder to accept my inability to work and be a real participant in life.

I do not accept the pain. Not a day has gone by, not one in the 30 years and counting (except for the wonderful, fantastic 3 months when the first surgery worked and the pain was gone) where I have not awakened and expected that today is the day. No more pain, I can look for work, I can do anything. No, strike that. It is the day I can do everything.

Instead each day is another day I am disabled. Now that I have written it here maybe it will be easier to write it elsewhere.


  1. Jackie writes:

    My son, who is in college, has recurrent depression/perhaps bipolar. It is severe enough that he qualifies as "disabled" under the ADA when he's having an episode.

    But I never think of him as being disabled or being bipolar. Nor does he think of himself that way. Instead we think of him as having a disability or having bipolar (if he does indeed have bipolar -- that's a tricky one)

    It's a subtle difference but the former says that you are a disabled person, while the latter says that you are a person who happens to have a disability. A disability that could be alleviated/controlled/solved someday when medical science catches up. And that's what we're hoping for.

    As far as what he would put down in the "occupation" box. Well, at present he writes "student." But the only people who really need to know your occupation are the folks at the IRS and SSA. The rest of them really just want to know if you're going to be able to pay the bill, or have a conversation opener.

    My son would have lots of things that he could put in that box, even if he were on disability and had no paid employment. He could write "writer", "health blogger" "mental health activist" "self-employed" "political organizer" or even just not answer the question.

    I guess the point I'm trying to make is that I think we can define ourselves any way we want. In fact, the next time I have to fill in that box, I might just write "supermodel" just to see the reactions.

  2. Lee-I've been reading your posts and haven't commented yet, because frankly they leave me speechless. I can't imagine what it must be like to be in your shoes. I applaud your courage and determination, and hope you'll keep writing, both as an outlet for your feelings and as a source of enlightenment for your readers.

  3. Jackie, Thank you for sharing that. I am glad that he is able to continue in school and hope he is doing well.
    Maybe it is anaologous to the difference between describing yourself as the job "I am a waitress" vs. I waitress."
    And you're right: for the most part it is merely a 'can you pay?' and they already have my insurance card. (: (I guess I always see it as a 'what do you get paid for doing?")
    ((*_*)) Not a bad idea just to spruce up your day while you're waiting.

  4. Profound, Thank you so much for reading and I very much appreciate the kindness of your comment.

  5. Jackie writes:

    Thank you for your kind remarks about my son. He had to drop all his classes (for the third time) this semester because of residual symptoms -- but he manages to stay positive and have high hopes for next semester. His school is only letting him enrol half-time in the Fall, so fingers crossed ...

    In a way, his story has some similarities with yours. He has a medical condition, and the science hasn't caught up with it yet -- in his case, maybe because more than one specialty is involved -- endocrinology, sleep medicine, psychiatry, allergy, who knows what else.

    Now, back to "that box" If I were you, I would enter "published author." First of all, it's true -- you are a published author. But also, when people ask you about it, it will give you more chances to spread your message.


  6. Jackie, Im so sorry that it has effected this semester but that is great the school is working with him, and you, to assure he can get his education. It's hard to stay positive when you are fighting the illness, and sometimes life too.
    I am reading a blog written by a shrink and he talks about psychopharmacology and its uses and trying to figure out what is and isn't good for his patients.
    ( )
    It moght be a good place to bring this information forward. And especially when a lot of different symptoms and diagnoses are involved, it is so hard.
    You know that;s true. I have never thought of that. Thank you.
    I am so glad you found me and the site. It is so good to 'talk' with you.

  7. Jackie writes:

    That's where I "met" you -- on Dr. Steve's blog, Thought Broadcast! I'm the same Jackie who posts over there. Sorry, I thought you knew that already!

    Good to "talk" with you, too.

  8. That's funny. No. I did not realize we 'knew' each other from over there. ((*_*))