Someone told me a long time ago that I needed to remember that I am not my diseases…yes I have diseases and I am disabled but that is not who I am. It is just what is wrong with my body. That is why I seldom mention “what” is wrong with me. For my name is Deb, not disabled and most certainly not any of the diseases I have.
It is easy to fall into the habit of using our diseases to explain who we are. They are but a label …a list of descriptions of the problems we have physically but they are not the soul of me. I used to try to explain to people why I was tired or why I walked on crutches or why I wear oxygen or why I was disabled. I felt like I had to defend how I felt. And then I realized that every time I mentioned those things….I took the focus off ME and put it on my disabilities.
I think part of this comes from when we work with the disability people and doctors to get disability. I find the process dehumanizing and yet I realize that it is necessary to keep those who just want a check from achieving that goal. And that is why they now require more tests and documentation proving what is wrong. An example, my son was given an MRI and spinal taps and told he had MS. But, they repeated those tests every few months for that first year because if he ever had to have disability, he had to have documentation of more than one MR and other tests as other things can cause lesions on the brain. And he would need lots of documentation from the doctors who treat him on a regular basis for MS if his health ever got to the point he needed to go on disability.
This means months of documentation proving you were under the care of and making visits to a doctor on a regular basis for whatever the disabling illness is and the doctor documenting how your health has progressed.. You can’t just walk in and say you have an illness and get disability. And I am glad to see them require more documentation and tests to prove it. BUT, this means that the disability process makes us focus on our disease so much that we forget we are people with a soul inside that has nothing to do with these diseases. And so, we find ourselves talking about our illnesses instead of what makes us a person…our likes, our achievement, our wants, our dreams.
I work hard wanting people to see me…the real me. I want people to get to the point that they don’t see all the gear I have to wear when they see me, but instead they see the part that makes me who I am. Perhaps that is why I laugh about robo mom and the gear. I want them to not ID me as their disabled friend Deb but rather as Deb, who is funny, quirky, compassionate, serious, musical, poetic, friendly, smart..whatever description they see of the real me for my name is Deb…..not disabled nor any of the diseases I have. I might have a folder in the doctor’s office that is over three inches thick….but the folder in my heart and head are miles thick.
I want people to see me and all the other stuff to fade into the background. I don’t want them to see me as the poster child for disabilities or pain. Yes, I have times I just can’t go and that is ok. But I don’t want people to see only the disabilities and pain and tell others “oh Deb can’t make it today. She is disabled you know and has chronic health problems”. That brings it back to people seeing my diseases and not seeing Deb. I would rather people be able to see me and say “Sorry Deb can’t make it today. She is resting”. I don’t want people to show me attention because I am disabled or have chronic health problems. I want them to see that I fight and I keep going and I keep climbing. Yes I am disabled but I do not let that stop me and I do not let that define me. Life is what we make it and I prefer to build my life on the person I am and to deal with the health issues I have in ways that allow me to keep climbing.
My close friends would laugh when I would answer people who asked me was I disabled and I would say “yes, I am disabled but I don’t let that handicap me”…..for if we fall into the rut of only seeing our illnesses and letting them define us…then we are allowing them to handicap us mentally. I am not willing to do that when the disabilities have already done that to me physically. And so, do I ever cross your mind. If I do…remember..my name is Deb..not Disabled or Pain or Chronic Health Problems. 🙂