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"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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Wednesday, May 25, 2011

Does accepting the label of disabled mean giving up hope?

(I wrote this at midnight a few minutes after finishing the last post.)

I ended my last post a few sentences early, wanting to end on a happier note. I had added two additional sentences that changed it from positive, or at least hopeful, to something more negative. Then I reread it and thought you cannot add those sentences. If you do you you negate hope but hope, or rather the question of hope is the point of this one.

What happens when you say "Okay. I am disabled?" If you say that, if you accept it, do you deny hope?

All the doctors have told me "I am sorry there is nothing else we can offer you." If I believe that, if I take those words to heart, hope becomes medically lost. If I take those words to heart while saying I am disabled, is it the refusal to say those words, to accept that term in applying it to myself, that keeps the (false) hope alive? And is it the falsity of that hope that keeps me from acknowledging my disability? And keeps me from accepting the falsehood of hope?

My family has treated me very poorly during all this. (It started way before that however). I hear and read people say about their dysfunctional families "No matter how estranged we are, no matter how dysfunctional when one of us is in need we come together for that person." That was never the case for me. The struggle to stay afloat, emotionally as well to meet the demands of facing more surgery, more meds, more side effects, and to do it alone could only be done if I was 'able', an irony since the fight was against my disabler - the pain. I needed to ignore, to not accept that I have a disability.

Wait a minute. Maybe right there, as I wrote that sentence, is where the difference comes in. I am not disabled, I have a disability. The word choice allows for the wiggle room. I am not the disability, I merely have one, which means that I also have ability. Hmm, is it the lateness of the day that has me meandering, maybe to an important AHA! moment?

I have never denied my abilities. It is those abilities that have made it harder to accept my limitations, my disability. "Of course I can do that." I say, offering for instance, to make phone calls, get people to sign petitions, write emails, knowing that I have offered to do something that will make me reach for the codeine pills, will hurt me, and hurt me bad, but if I say "No." I feel guilty. If I say "No." I may have to add, "I can't. The eye pain will not let me do that." If I say "No." I am saying 'my disability will not let me do that'.

I love words but when it comes to my own life distinction of meaning is harder to see. I am not sure if the acknowledgement of my abilities overrides the meaning of disability. My abilities let me do a lot of things. I can think, hear, see, speak, write, do the tasks of living.
It is the disability though that always has priority. Pain takes precedence, nature made it so.

So what do I do? Do I continue fighting the same fight?

I love the saying "crazy is doing the same thing over and over again and expecting a different result." Sometimes the different outcome does happen. Hope springs eternal. Disability ends, ability takes over. Until then seeing myself as Carol, who has a disability but is not her disability, may be trying to teach an old dog new tricks but old dogs can and do learn.

Maybe me too.
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I just read a comment from a reader about the difference between having a disability and being disabled. She makes a great point, for the most part when the question is asked on a form it is usually to find out if you can pay, rarely do they even need to know what your job is so you can pretty much write anything. That thought makes me smile. Maybe the old dog was just taught a new trick.

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