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.

[tags]Spinal Muscular Atrophy, cure, SMA, piano, musician, cure disease, muscle disease, play music, wheelchair[/tags]


3 responses to “When there is a Cure for SMA…”

  1. 🙂 Your such a beautiful soul and as a mother of SMA type 1, I want a cure more then anything because I don’t want to bring another baby into the world without one… its a hard life for both the kids and the parents… however, you are perfect just the way you are. I believe you chose this life, because there were lessons you wished to learn. My daughter passed over four years ago and I know without a shadow of a doubt that she gained her wings and much more… It takes a strong amazing soul, to live the life you children choose and to do it with such love and hope is simply amazing.

  2. I have SMA type 3 and I am slowly but surely loosing my ability to ambulate. I understand your confliction with a cure. I myself know I wouldn’t be the person I am today without having to had experience living with SMA. All in the same thought though..I imagine running with my kids, being able to pick my son up, and running in heels everyday for the rest of my life.

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