Because Silence is Costly

My title phrase is taken from the poet, Audre Lorde, but I have a reason for using it (besides the fact that I had to read some of her work for one of my seminars).

Scoliosis is a silent disability. It is one that often we can hide easily and that when we do try to talk about it, no one understands us. The Red Cross called me today to schedule my blood donations - I guess it is becoming real. The only way to attempt to let people into your world and understand is to talk.

I've spent over 15 years dealing with scoliosis, and I would say that I have been silent about it for at least 10-11 years of those. I've decided to start telling my story in pieces.

I was diagnosed when I was 13 after going into the doctor twice complaining about back pain. At that time it was 29 degrees and I was not initially braced. I went to an artsy middle school, which also had an exchange program in Japan that year. Shortly after I was diagnosed with scoliosis I went to Japan for a month to study and I remember carrying around these huge backpacker's bags and hurting even back then. My teachers who went with me could not give a crap about my newly diagnosed condition and pretty much told me to suck it up, although we all know that carrying around 50 plus pounds can do more damage than good. I think it was partly because of this experience that I learned asking for help or letting people know that I hurt did me no good.

In high school, I did not want anyone to know that I had scoliosis. The only problem with that was that my doctor told me I could not take P.E. class. Instead I took dance class. One girl, Miranda, said to me, "I wish I had scoliosis so I didn't have to take P.E." Those words still haunt me until this day, although I've done my best to forgive her ignorance and insensitiveness - we were only teenagers. However, I never talked about my scoliosis, and I did many things wrong. However, I moved heavy objects when people asked me to because otherwise I would have to admit I was different, and those volatile teenager years are no time to admit difference! :)

I was on the swim team to help control my scoliosis and never thought that my scoliosis hindered my swimming in anyway. I received the Noah Wolfson Award my sophmore year, which is an award given in memory of Noah Wolfson who was a swimmer and died of cancer at a young age. At the award ceremony the coach told all the guests that even though I had scoliosis, I never let it stop me from achieving my goals and perservered through pain and trial. Lovely story, huh? I was humiliated!! I could not believe that this person thought it was okay to tell everyone about this hidden curve on my back. Aw, to be young and a stupid teenager. I do appreciate the award now.

Only two of my friends dealt with me in my brace. Those two precious friends who have stood by me for all this time are coming out to take care of me this summer for a few days! Well, I think this blog is long enough (probably too long if you have read all this way). I will write another installment later.