ramblings on disability

I endeavor not saying, “MY” MS or “MY” RA. I always felt it gave too much power to the disease. I was somehow relinquishing control as if that’s WHO I was—THE disease. The solution for me was to name them. At that time my neurologist was female and my rheumatologist was male. I decided to name the MS, Lucy, and the RA, Ricky. Yes, a reference to Ricky and Lucy Ricardo. One must find amusement where they may. I look at Ricky and Lucy as a part of life. I recognize them, am aware of them, but they don’t control me or what I do. Of course, I have limitations. We all do no matter the age—disease or no disease. They, however, do not define me.

We travel to Japan frequently and have many friends who call it home. We were visiting an aquarium in Kobe several years ago, and the friends we were with were purchasing entry tickets. He turned to me and asked if I had anything to prove I was disabled such that my entry ticket would be discounted. For some reason I found this hysterically funny. As mentioned previously, Multiple sclerosis is a disease of Caucasians. It is basically unknown to Asia in the presentation that we may recognize. So what exactly would I possess that would make the woman behind the window believe I am disabled if walking with a cane isn’t doing it for her since my disease is totally foreign to most people living in her country? As I type this, I’m rubbing my face. I STILL think it’s funny.

I’ve looked for you. I truly have, but I can’t find you…yet. Summer 2012, when my hands became useless, and I was pecking away at the computer looking for any sign there was hope, I found your blog describing how gluten impacted your arthritis. Gluten or sugar, I think, but how you couldn’t resist cupcakes and when you indulged in that cupcake, your hands told you how bad they were for you. This gave me hope that diet truly could change the course of what I had not yet been diagnosed with but knew I had, nonetheless. I told my father about you and how convinced I was because of your story. I’m still searching for you, but now the web is overwhelmed with descriptions like yours. Maybe all of them read about your cupcakes. In any case, thank you, and I’m still searching for you with the hope I will find you and be able to thank you directly.

Why is it when someone learns that I have MS or RA, they apologize? I understand it from the point of view of not wishing ill to others, but it’s not THEIR fault that my genetic makeup is such that this was a very likely outcome. It also seems to me that this presumes to know about my life before diagnosis. Now what? It’s worthless because of a disease? Call me a cranky cripple, but our language, and particularly our society, does not know what to do with crippled people. Our language is not adequate for conveying sentiments surrounding disability or disease without also conveying blame, criticism, denigration, or pity. I keep this in mind when I’m responding to people; I want to believe that they have my best interest at heart. They just don’t have the proper words or way of expressing it. Life is short. Be nice.

As I post this, an acquaintance has been diagnosed with pancreatic cancer. I look at her website and the vast majority of the messages say, “I’m sorry.” I rest my case.

I’ve held doors for people in chairs (I hold doors for everyone given the opportunity when I am able) only to be told briskly that they were perfectly capable of dealing with the door themselves. Well, I never said you weren’t; I just thought I’d attempt to be helpful. Would it have made a difference if I were carrying a cane that day? Showed them that I was crippled, too, only differently? Could we then compare our “crippleness” and decide whether they, with their permanent spinal injury, were more or less worthy than me with my body dismantling and consuming itself? Who knows, but I have come to realize that there are people that you just will not be able to satisfy no matter their disability status. As my mother would say: It makes my ass tired (considering it).

Then there are the people I show no mercy. I’m not careful in my response because their opening volley is so blatantly offensive and inappropriate. “My grandson has MS, and his life is OVER. I feel SOOOO sorry for you.” From a stranger approaching me at my car and asking why I had a cane. “No, you go ahead and take the disabled bathroom stall. You OBVIOUSLY need it MUCH more than I do!” The latter from a terribly obese woman in a US airport restroom looking SO distressed that I was mentally reviewing my CPR classes. “Why don’t you amputate your legs if they aren’t useful anymore?” This gem from a woman in a grocery store with her young son; I was in a wheelchair. I asked her why, using the same logic, she did not remove her head. You know who you are, and there are people like me out there who will cut you to the quick and not think twice. Behave yourselves. Think before you open your mouth…or type and hit “send”.

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