Claire in a Chair: 3

What do we live for? Many will argue our dreams, both the ones we see when we shut our eyes at night and the dreams we work to achieve when we wake are what we live for. But what keeps our dreams alive? Mere hope. The hope that things will change, the hope that life will get better.

I dream of going to college thousands of miles away, on the East or maybe the West coast. I dream of traveling and divulging myself in the cultures of the world. My dreams, in all forms, are free from the restraints and confinements of a wheelchair, of a disability and of a disease. A disease whose greatest goal is to take dreams away.

I used to hold hope in the fulfillment of my dreams. But, with age I have become far too much of a realist. The realist in me knows how unlikely it is for me to get up out of my chair and walk, jump or run. My hope in science has not wavered, but my hope in my body has.

Spinal Muscular Atrophy is considered to be one of the closest genetic diseases to reach a treatment or cure. SMA has a major research advantage because the deleted or affected gene has been identified and can easily be attacked. Trials for drugs are in several different phases, my sister Lauren has been participating in a very promising trial for almost two years now, a trial that I was excluded from because of my severity.

I now believe I will not be cured. My hope resides in living, and living well. Living the life of my dreams, but maybe with a few complications  or challenges. I just want to hold the upper hand. I can’t let this wheelchair, plan and take control of my life, of my dreams.  John Green sums it up perfectly in his New York Times best-selling novel, “The Fault In Our Stars.”

“There is no glory in illness. There is no meaning to it. There is no honor in dying of.”

Now I hold hope in myself, in my will to live, and my unwillingness to give up or give in on my dreams.