Just under a year ago, after a fainting spell that ended with a hospital visit, I was diagnosed with CPEO; Chronic Progressive External Ophthalmoplegia, a mitochondrial disorder. The original prognosis by my physicians said that I had a very high risk of developing KSS; Kearn-Sayre Syndrome, a much more dangerous disorder with complications including a high risk of early heart attacks. Fear of this possible, shortened future controlled me for quite a while. That is, until a specialist told me that early diagnosis and treatment and proper health care could save me from such a fate.
The truth is, we have tough times in our lives but will eventually get through them eventually. How often we think to ourselves, “Man, my life sucks. No one has it as bad as I do”. I bet if you really think about it, it’s more then you’d like to admit to. However, it is always important to remember that there are people who have it much worse then some of us ever will and they continue to make the most of their lives and take each day as it comes.
In June of 1997, when he was only 9 years old, my friend Nick was diagnosed with Ostiosarcoma, cancer of the bone, in his right pelvis. He started chemotherapy and in November of that same year, he underwent a surgical procedure to remove ¼ of his pelvis, including the ball and socket of his right hip, effectively shortening his leg by 4-6 inches. Following this, Nick spent years in different types of leg casts and upper body stabilizers to help with his healing and still growing body and constantly relied on crutches to get himself around.
Did any of this bother him? Did he wake up every morning thinking “why did this happen to me”?
Every summer, Nick and I would gather all the young neighborhood kids and play soccer, letting them play with the ‘Big Kids’. He was always the fastest on either team. Later on, in high school, Nick joined the marching band with me, choosing to lay his saxophone aside and take up percussion in order to still take part of the competitions, always pulling his fair share of the pit equipment off the field. We used to tell him to wrap his crutches in blinking Christmas lights for more of an on-field effect.
I used to, and still try to tell him how inspired I am by him and his only response is, ‘why’? To this day, he doesn’t understand why I see him as being such an amazing role model. We know that life will come at you fast and that you have two options; you can either run, hide and cry about it or, more importantly, stand up and face, even if it is with a set of crutches. This is what Nick believed in and it’s what I believe in as well.
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