My Journey With Autoimmune Disease


I woke up this morning, and my right hand was completely dead. I mean like this dead tumor hanging off the end of my arm. Like a skin tag. No feeling—no sensation—and my mind was screaming something about writing. How am I going to write?  The only way I could tell that I had my right hand is I could see it.

I looked at my hand and willed it to move. There was nothing at first; then after what seemed to be many long moments–movement. I still have not breathed a sigh of relief. I can only think of what’s to come. My right hand is dying. This movement is a fleeting respite. In what will seem like a split second, it will simply stop responding to my commands to operate.

I’ve lost my legs twice. The best description I could come to is it was like air between my hips and the floor. I mean, like, nothing there. So my torso was hanging in the air. Gravity took over and CRASH; I met the floor in a terrible fashion. That had happened four times before I ground to the conclusion I had to lie in bed and not stand. So I suppose you could say I’ve lost my legs five times. It’s just that I count that one episode with it’s four terrifying crashes in one day as once. That was in 2012. I lost my legs again at the beginning of this year. Each time I drove myself to walk again. My Autoimmune disease relented and allowed me movement. But she’s a beast and doesn’t have to do so.
Each time my legs have come back to life, they’ve been worse. I am this side of a wheelchair. But I push to walk. I don’t want to give it up. Walking, I mean. Any distance is hard. You probably look down a long hallway and don’t even blink. I feel trepidation. Getting from point A to point B is a conundrum. Will I make it without hitting the floor?

My hitting the floor bothers the able-bodied more than it bothers me. People believe people don’t belong on the floor. Think about it. You’re walking along, and you see a living, breathing person prostrate on the floor. Horrors. I feel I have to comfort people. I tell them, The floor and I are friends.

I am between Neurologists, so I called my primary care physician. I was crying.  She said a magic word—FLARE. Autoimmune Disease can flare up and die down. In my extreme panic, the word didn’t even light up inside my mind. Hope trickled in.

But the truth of the matter is: If this morning was not the end of my right hand, it is the beginning of the end. It has happened. My hand became a lump of bone and flesh protruding from the end of my arm. It will do so again. And someday it will do so forever.

Dying is difficult, and I am doing it a piece at a time.  It is a lonely journey.

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