Dress Clothes

I got dressed today. I don't mean the simple act of putting on clothes. I mean getting dressed into the clothes that I used to wear when I worked, the clothes that fill my closet, now supplanted by the perpetual blue jeans and polo shirts that have become the fundamental tools of my wardrobe these days. I got dressed into "dressy" clothes. I can't say why, I just did.

Perhaps it is in rebellion to the loss of my career thanks to this disease. Almost every PALS I know has had to leave his or her chosen profession thanks to the exhaustion and limitations of this illness. The uniform of my work life meant a lot to me, identifying me as a professional, as a person with unique skills that were wanted in the business world. While I still have those skills, my body cannot deliver on what my mind proposes. Perhaps getting dressed is just my way of saying to myself that I am still that professional, still that person with unique and useful skills. It's my body that is failing, not my mind.

Another alternative is that this need to dress up is a rebellion against the constant dressing down that I have come to. With no reason for anything in particular, I just don't bother to get dressed up. The sadness is that in not bothering to get dressed, I am giving up a part of my identity. Perhaps today is about reclaiming a bit of myself through the clothes I wear, demonstrating that this disease can't take it all, that I can still look good, even in my wheelchair. The blue jeans and polo shirt can stay in the drawer for now.

Personally, I think it is about the pain. Lately I have been having a lot of it, in my back, in my knees, in my arms, and now in my shoulders. It is perverse, this pain. It comes when I lie down, not when I sit in my wheelchair. It comes at night, wakening me with discomfort. When I lie down stretched out straight, my knees stop hurting but my back starts to ache. When I curl up my knees, my back stops aching by my knees stop hurting. The rest of me just hurts from moving my legs around half the night.

I am not going to give in to this part of ALS. I will find a way to make a life even with this discomfort, to live each day as much as I can in spite of the aches and pains. There are lots of things I cannot do, but I can still dress decently every now and again. This morning I chose to dress up. I am going to put on some nice dress socks and perhaps even my dress shoes. I will forget about the pain for a moment, and look decent. I might even get a haircut today!