I was at the Occupy Philadelphia rally last week. A reporter, Sara, and I talked, and she decided she would interview me. (She was from CNN. I don't know if the interview was shown or not.)
The camerawoman turned on the camera and Sara took out her reporter's notebook.
"What is your name?" I answered that one easily.
Then the question that always stumps me. (I think I have written about this before, either here or at the old Women In Pain Awareness site so please bear with me if I am repeating myself somewhat. Age, you know, is my joke but it is more what my friend always says of me, "You never learn your lesson.")
"What do you do?"
I thought for a second. Did my usual hemming and hawing dance, more inside my head then vocally, I hope.
Then I said "I am disabled."
I hate saying that. Those of us with pain or other invisible disabilities fear the look that we sometimes get, the one that says 'Oh yeah, sure, I see how disabled you are. (In fact there have been 2 comments recently under the post Pain vs. Cancer. The commenter lets me know very loudly how untrue chronic pain is as a disease and how we are all nothing but drug users, lazy, etc. - Please feel free to reply to him.) Sara had no response to that, nor did I see disbelief in her face (but she is a reporter, trained not to show reactions.)
I stayed at the rally as long as I could then took the train to get back to my house. As I rode along, I thought about the interview. And emotionally kicked myself.
An online friend and fellow pain sufferer said, a long time ago, you (meaning me and disabled others in general) are much more than your disability. You are mothers and daughters, writers and singers, students and teachers. Disability is a small part of who you are as a person.
She was right. I should have said I was an author, or hypnotherapist, or teacher.
I am published and even though I rarely see clients or teach, I am and do both of those as well.
My life revolves around the things I cannot do. The things I can do fade in the background.
Maybe by letting them fade I make myself less, not only to the world but to myself. And maybe that is one of the biggest disservices I do to me.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Carol,
ReplyDeleteI always say I am an unpublished, unpaid writer. That always stops people in their tracks.
I just saw on Dr. Oz that a study recently came out that said chronic pain is a disease just like diabetes or high blood pressure! Hallelujah! Google the Doctor Oz show and look for chronic pain. He did a pretty good job but it needs to be taken further.
I also just put a note up in FB about the things NOT to say to someone struggling with an invisible chronic illness. Feel free to share it. I got it from a t-shirt in cafepress.com.
Don't kick yourself. Feeling guilty only makes us feel worse and there's no point to letting people who don't "get it" make us feel worse than we already do.
Gentle hugs,
Chelle
Good to hear from you.
ReplyDeleteThats a good answer and I bet it does.
I am having such a hard time getting the latest fb posts on my page so I havent seen it.
It has been around for a while the agreement that cp is a disease in and of itself. The person or persons writing these notes has some strange agenda where he/she needs to believe what he wrote (or is just a you know what)they have written.
very, very true. Thanks and gentle hugs back.