I refuse to accept the disability label. It pisses me off. It makes me want to curse, a lot. When I had to apply for Social Security Disability I did not even let the D word into my mind. I just knew I had to get the money so I could take a break from teaching. It was a harrowing, upsetting process. I won on the first time around. I remember thinking, “oh, I must be really sick.”
As time has gone on and medical crises have waxed and waned, I have still never put myself in the category of, “disabled.” To me, that word means you can’t walk or you can’t see or you can’t hear. Even though, if you ask me outright I will tell you the proper term for those things is, “differently abled.” I believe that. I really do: But now, back to me and closer to home, so to speak. I realize my family and some of my friends increasingly see me as disabled. And as a result, they treat me differently.
The changes are slow, almost imperceptible, especially when you don’t want to see them. My husband is always asking me, “Did you do too much?” or “Why did you do that?” I appreciate his concern but his understanding of what wears me out and when is pretty off base. It’s ok. He doesn’t mean it. How in the world could he know me better than myself? Nah.. that can’t be true.
I even notice my kids getting in on the act. That is nothing compared to the people who just don’t talk to me anymore. It is like I am toxic. I guess I am. I am not much fun.
BUT I AM NOT FUCKING DISABLED.
My therapist, who has just retired (shit, shit, shit) ran a group called “Adults with a disability” for like thirteen years. She invited me and I visited a few times. It was scary. I didn’t like the fact that it hit so close to home. I kept telling myself I didn’t belong with ‘those’ people. I suppose a valid question to ask would be,
“Who do I belong with?”
No one and nowhere: I am in a no man’s land of chronic illness and I don’t know the way out. I keep thinking I have it all under control and then the next thing hits.
I am a mom. I am a wife. Those are the two roles I cannot let slide. I try to do them above all. I also try to write. Writing is part of being for me. I am a musician and I am not making music now and that hurts. Writing is the only way to let the artist stuff out.
I am, despite it all, a person of faith. That faith has morphed and changed shape drastically, and I want to pursue new avenues. But, for now, I don’t seem capable of getting too far past my own door and the demands of my family and my life. I am trying to be patient. Before I know it, my youngest (8th grade) will be out the door, and I will have a lot of time on my hands.
So, am I disabled?
I don’t know.
Maybe a better answer is; I don’t care. Labels are not particularly useful. I think I will not worry about them. After all, I have never been one for labels. I don’t like race labels and I don’t like sexuality labels. It is all fluid. That is how I see everything… shades of gray. I suppose there are days when I am disabled. But there are many more where I am not. I am unstoppable because I choose to get up and get out the door despite the pain and despite the fatigue and despite whatever else is bothering my physical body. I am my own boss.
So, fuck the labels. I can choose my own future. If that is at all true, I am not done yet. Don’t count me out.