Wednesday, December 08, 2004

President Bartlett on The West Wing had an MS attack on tonight's episode. An episode I watched with dread and anticipation.

I had see the previews of the show that let the audience know MS was going to be a focus of the episode. I tried to ask two different people if they would watch the show with me, but neither one understood that I didn't want to watch alone.

He first noticed symptoms with one hand, slight tremors and and inability to really use it. The paralysis spread to his upper body. And someone had to feed him. Then it spread to his whole body. And someone had to carry him.

Part of the reason I watch The West Wing is because one of the main characters has multiple sclerosis. But I had been lulled in to emotional safety because he was doing fairly well. However, the majority of people who have relapsing/remitting MS eventually transition to chronic progressive MS. With the former, the symptoms and attacks come and go with recovery, if only in part, between times. With the latter, the disease begins its downhill course of ravaging the myelin sheathing in the brain and irreparably damaging neuromuscular activity. Walking. Talking. Thinking.

Myriad symptoms that are as idiosyncratic as people themselves. No set timeline or progression at first. You can have good days and bad days...or good years and bad years. It is a disease of devastating uncertainty.

Many people are living full lives, fighting the disease every step of the way. Others have given in, waiting for the inevitable and missing life in the mean while.

I find the disease to be incredibly lonely. For the most part, my friends, family, and co-workers who know rarely mention the disease. They do not appear to think about it either. For example, when I get too hot and grow weak and tremble and disoriented, they neither recognize what is happening or stop to help.

The cognitive dysfunction that I experience on a regular basis often frightens me with the enormity of what I am losing, what I have lost. But I am so fearful of others making light of the moment or criticizing the confusion that I mask. I hide my confusion and aphasia and wait for the moment that I can reconnect mentally.

The only time that loneliness is abated is when I speak with or read about or see someone with MS who is going through or has gone through symptoms I have battled. [Primarily because half the time you ask a doctor about a symptom you are treated as if you are crazy or a hypochondriac when really the doctor is not aware of the full range of symptoms that people with MS experience].

I understood how quietly President Bartlett sat as he lost ability to control his body. He smiled, made small jokes, listened...all the while his mind racing with questions and plans and frustration. While I have not experiences full paralysis, I have in both my arms and my legs at different times. This moment comes and suddenly or slowly it is as if your limb has disappeared. You cannot control it. You are trapped with nothing to do but wait until it passes.

It passes. And you cannot afford to wonder when it will happen again. It passes and you move on.

Tonight was a reminder of the reality of my life. I was sobered. But I was comforted in knowing that while I am lonely. I am not alone in this disease.

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