Over the past 14+ years, I have been asked several times if I was ever scared when I first became a quadriplegic. My answer has always been yes, to a certain degree. Of course, being in a hospital surrounded by numerous doctors and nurses would frighten even the most courageous of teenagers, and I was no different.
Looking back on my hospital stay, I found it difficult to ever remember being truly scared; probably because I was so focused on trying not to die, I shoved the fear into the back of the dark reaches of my mind. For a while it was so hectic it seemed impossible for me stop and really come to grips with what was happening to me.
Once I was able to take a moment, I did find myself becoming afraid about what was happening to me. But I wasn’t afraid that I was going to die, or that I’d be in the hospital forever. I was scared that I was going to lose the life and everything I knew. For 14 years, everything seemed to be on track. I was a great students, had amazing friends and a supportive family. And as I laid motionless in my hospital bed, all I could think about is that I would never see that life again.
While my life did change on that fateful September day in 1997, I can say that I’ve faced this adversity head on and beat my illness to live the best life I can. But while my past fears may be gone, I find myself with a new fear.
From the first day I became a quadriplegic, there isn’t a moment that goes by where I don’t think about what it was like to be able-bodied. There are times when I find myself remembering playing soccer with my friends, sitting in Mr. Cranson’s 8th-grade Spanish class and riding my bike to the Links for a round of golf. But lately I’ve begun to notice something different about these memories. While I remember doing these things, I’m finding it harder and harder to remember what it felt like to kick a soccer ball, sit in a chair or ride a bike. I know that I was able to have 14 years of life with the ability to move my arms and legs, but as the years go by, remembering what that feels like is getting more and more difficult.
And that scares me to death.
Hopkins Syndrome has robbed me of my mobility, and as I get older, time is robbing me of the remembering the experiences of my past. Now that I’m spending my days in an electric wheelchair, my memories are all that remain of my life as an able-bodied person. And just like it did 14 years ago, the fear is starting to return from the dark reaches of my mind.
But just like I did 14 years ago, I’m going to fight and overcome my fear. While this disease has taken away my ability to move my arms, I’m going to hold onto these memories for as long as I can and never let go.