Where to begin? It begins, I suppose, with me. And why I’m even doing this. So, as the King of Hearts says, let us “begin at the beginning.”
There are several important things to know about me to understand any of this:
I have what has been termed an autoimmune condition. It manifests as what looks like chicken pox on my arms and legs. I also get nerve pain flares in my legs. This is the fourth most important thing to know about me.
Yes, I have been to the doctor. Several, even. The Gregory Houses of UCI, UCLA, Scripps Institute, Baylor College of Medicine and the Royal College of Medicine in London have all stared at various portions of my anatomy. I have even been written up as a case study in an issue of JAMA (and no, I am NOT telling you which one, you lil’ perv). Every last one has told me they got nuttin’, honey. This is the third most important thing to know about me.
No, I am not contagious. I do not have AIDS, the mumps, the measles, chicken pox, or whatever that mysterious thing was that your cousin’s best friend’s roommate had 13 years ago for one summer. Beyond that, my medical history is not your business. Go Google for HIPAA if you don’t believe me. This is the second most important thing to know about me.
I am not your teachable moment. I am not obligated to tell you my life story, serve as some sort of role model for visible disabilities, or be cheerful and brave. I am not an object of your pity, your scorn or your circus-freak curiosity. This is the MOST important thing to know about me.
Sometimes I get angry at a body that has betrayed me. Sometimes I weep with rage for what it has taken from me. And sometimes, I smack people on the snout when they can’t see beyond that to the person I am.
This is a dark and bumpy ride. Keep all arms and legs inside the vehicle until it comes to a complete stop.
Thank you and have a day.