(I wrote this shortly after my diagnosis, back when MS was just starting to make itself evident. Back when I could still drive a car, and walk down the hall, and go to work. The good ol’ days.)
I had to tell them at work that I wasn’t drunk. So they would not think that I was. So that when they saw me walking down the hall and stumbling over the toes of my shoes, and leaning on the wall for support, trailing one hand along the wall to insure I could maintain my balance. When they saw me stand up and barely be able to move my legs and my hips, when they saw me stand and almost have to sit right back down again rather than fall down. If they saw me out in my car, in the park at lunch, trying to hang in that place when I was asleep enough to ward off complete exhaustive collapse, but not so asleep that my throat would close and I’d suffocate myself. I felt the need to tell them at work that I was not drunk, but that I have a disease that sits in my brain and pushes random switches with no rhyme or reason, that rides around like a bumper car bouncing off synapses and nerve junctions and sometimes scores a direct hit and bounces one car off another and who knows where that car will go. And sometimes all the cars just sit there, or align themselves in some sort of order.
I felt the need to tell them at work so they wouldn’t think me an idiot for not remembering how to do some things, for taking so much longer than anyone else to learn and understand some things – broad concepts I have no problem with, but detailed mechanics just whiz right by me. And maybe no one really looks at me, maybe they don’t notice my stumbling and staggering and tripping. And maybe they don’t notice how hard I have to work just to keep up.
But I felt the need to tell them, to give them a tiny hint of what is going on in here, not as an excuse, but only as an explanation. I’m not drunk, sometimes my feet don’t respond to my desire to walk. And sometimes it is so hard to walk down the hall to the bathroom before I pee in my pants. (I think I should keep a change of clothes in the car – who else has to deal with thoughts like that?)
I felt the need to tell them so that if I ever woke up in the morning and really could not get out of bed, as I often say I can’t – if I ever really can’t, if it ever just gets to be too much, and I have to call in and tell them I just can’t do it today, maybe they will know and understand, or at least know, a little. This getting out of bed in the morning, a great heave, and getting myself together enough to face the day, to face just this day – I tell myself just get through this day and you can come home and lie down and maybe sleep, the one time that I completely forget everything. It doesn’t really refresh, but at least I am not aware of the pain.
So I told them at work that I was not drunk, that I was just doing the best I can, as we all are, as everyone does every day. It’s just that sometimes I look like I’m drunk – but I’m not. And I wanted them to know that.