Thursday, January 31, 2008


The not so funny thing about having MS is that I sometimes get the feeling that I have no idea who I am supposed to be. Just as soon as I feel like I accepted my condition it changes. I hate the changes...not steady downhill changes but rather the upward changes. Or the uneven changes. I have secondary progressive MS. It's no walk in the park. I have to be able to wake up in the morning, look in the mirror, and say "so you can't do what you did a week ago and that's ok." I do that and then I have this great sense of peace. It's like I've jumped over the self acceptance hurdle. Taken another small step in my self confidence program.

Then boom. I wake up the next morning and have to say "Holy spotted cow! I can do this and this. I couldn't do that a week ago! Was I too quick to resign myself to another loss? Did I really lose my ability to pour a cup of coffee without spilling it everywhere? Have I been wasting paper towells." The self doubt sets in. Am I deluding myself? Do I make myself weaker than I really am? If I don't suceed at something is it because I have a horrible tendancy to expect failure? What does that make me? or the real it all in my head?

Logically I know that I have MS. It is getting worse. I am not making it worse. I do stupid things that make my symptoms worse. But even if I didn't do stupid things it would get worse anyway. And the so called stupid things are the activities that I want to enjoy now. Those activities will eventually no longer be enjoyable. And sometimes it will be easier. My symptoms will get better. And really, logically, that's part of having MS. But logic doesn't always dictate emotion. There's a sign outside a shop on my very short drive home from work. Right now it reads "Don't believe everything you think." Hmm......Now I am taking advice from signs.

I have always thought of myself as a very physical person...defined myself by my physical abilties. I am a dancer, I am a fencer, I take hikes, walk my dogs, do construction projects, ride horses, and climb rocks. I like adventure and physical challenges. My list of "things to do during my life time" included climbing mountains, biking across the world, learning how to snowboard, and learning how to tango. Hmph. Yes...I can still do these things. Maybe. And certainly not in the very AB manner I imagined. Luckily I did not try to become a professional ballet dancer. I decided to go to school for academics instead and I excelled. But that doesn't stop the memories. The dreams of dancing and fencing. The dreams of running. The dreams of an old me. I wake up with my muscles tensed for a Tour jeté that never comes. Instead my legs are cramping. My heart is cramping. Sometimes I cry. I stretch my legs out. Point, flex, point and flex. Slowly they relax, but I remember. My body remembers. That hurts more than any other part of this bloody condition. Sure the cramps during the day hurt. It is agony. Sure stumbling over imaginay objects on the floor cause some quick recoveries and some slow motion falls. But nothing compares to the feeling of "I used to be able to do that". Nothing can fill the emptiness left by the words "I used to be a very physical person." Because now I am not.

I keep thinking that if I try harder, push myself further, and feel the burn in my legs that I recognize as a successful day of dance, then I can beat back the loss. I encounter more loss. I never learn. I look in the mirror and tell myself, "you can handle it. you know what is coming and you know it is ok." Logic sometimes fails. The emotion takes over and then it is almost unbearable. But what is really unbearable is the knowledge that the next day I might be able to do that which I could not do today. Is it too much to ask for consitancy? Will someone ever tell me to stop trying to do that I know I can't do? I don't think so. It is not their responsiblity. It is mine. I have to be able to accept that some days I will be able to do those things I could not the day before. And I have to be able to give up the things I could do the day before. And somewhere along the journey I have to be able to differentiate between things I can and cannot achieve.

A couple of nights ago I dreamed I was going fast. I acheived the same sense of freedom I remember from partnering in ballet. I felt the air rush by me. I was in my wheelchair. Perhaps it is a step forward?

1 comment:

Elizabeth McClung said...

"But what is really unbearable is the knowledge that the next day I might be able to do that which I could not do today." - Thank you for writing about this. I feel this odd connection (I almost said "bond" but restrained) becuase I too was/am a physical person, classical dance, running, biking, and of course, the fencing.

I still have dreams of running, that letting your legs stretch out as you extend the arms and push into oxygen deficient, racing the last three blocks home to the finish. But I never thought I would say I am "lucky" in that I am never given a second chance, or temptation of a moments remission.

The "I used to be able to do that" is very strong, to reenter sports again, competing with AB's as the weaker player instead of the one to beat, it is a different view. Painful and different, when people are amazed that I am equal to an "adequate" AB athlete.

But I can focus on "what next", "What now" focus on the balance act of how much lost this week/month? I used to think I would give almost anything to have it all back for a day, but now, I wouldn't because it would simply be too painful, coming back to the chair, and the bed and the life.

I wish I had some fortune cookie answer/solution for you. The closest I can say is that I almost signed up today for a dance class (tango or ballroom) and was just going to show up and let them deal with it - something I never would have been able to face thinking about some months ago. So yeah, I think that was a very good dream