When there is a Cure for SMA…

I am posting about “when” there is a cure for Spinal Muscular Atrophy, simply because I am told that there is a great chance that SMA will be cured relatively soon. When you grow up with a muscle disease you hope for a cure when you are young. People tell you there will be a cure. Then you become a teenager and cures seem less important as you begin planning your life. Well, now that I’ve reached 30, it seems that what I deemed impossible sometime while in my 20s may actually come to fruition.

I would say I have mixed feelings about this, but it is not anything to do with me not wanting a cure. It is the implication that being a person with a disability, I would need to be fixed. I feel I live a great life. A cure for Spinal Muscular Atrophy would be great, too, as it would allow me to do things independently of assistance. Still, I will not say my life is incomplete without a cure. It just has the potential to make everyday obstacles disappear, and to me, that is truly great. Still, even with a treatment, I have faced years of muscle atrophy and it has affected my body, so who knows how much function I will truly recover?

I have mixed feelings about an SMA cure, for a variety of reasons, and one is that I wonder where I will fit in the disability spectrum. I will always see myself as a person with a disability. A cure will never truly take away my SMA. It will merely put me in remission. How will others in the disability culture perceive me if I regain abilities I have lost? How will the able-bodied community view me if I am incapable of recovering all of these functions I have previously lost or been denied? There are so many questions that I face the prospect of a cure with a bit of trepidation and yet, excitement at the same time.

I already have plans for the first thing I will do after I start to regain functional abilities. There is no if, ands, or buts to treating SMA. There is a 100% cahnce that some treatment will become a reality and if it becomes available I should be able to qualify for it. So, why not make plans and celebrate the future? Why not begin to think about all the things I will be able to do, on my own, again?

The first thing I will do, after hugging my girlfriend, a full on, arms wrapped around the neck hug, something I have not been able to give her for the past few years without her raising my arms for me, is to find the nearest piano and play something. I have been in love with music for as long as I can remember, and the piano/keyboard was the first instrument I ever played.

When I was seven, my Aunt Betty Boop (what we called my grandfather’s next door neighbor) died. Her nephew let me have her small organ keyboard. At the time, I could not play a note of music, but I felt like Count Dracula, as I invented chords and sang along with homemade lyrics. I believe the first song I ever created was called “Death Wish”, which was made up of a selection of menacing minor chords and I would occasionally throw in scream-o lyrics. I loved that little organ. It provided me with hours of entertainment.

When I was in fifth grade, I joined the band, against my parents’ better judgment and went on to be a first chair clarinet player into high school. I learned to read music and was able to create actual music and learn to play the actual piano. I had my own keyboard and I could play practically any melody by ear. I never truly achieved greatness as a piano player, as two handed playing took more strength than I could muster for a continuous amount of time, but I absolutely loved playing what I could.

A few years ago, I was bed ridden and now sitting up in my wheelchair properly is impossible. I have chronic hip pain in the joint and muscle. This means I have less control of my arms and therefore can no longer play any instrument. I am now certain that one day I will play again, once there is a cure for Spinal Muscular Atrophy. Somehow, I believe that day is going to be soon.