“I believe you have multiple sclerosis.”
Those are the words my neurologist spoke after pointing out the bright white lesions on the MRIs of my brain and spine.
Multiple Sclerosis is a progressive and debilitating disease of the central nervous system. There is no cure for MS; the only treatments are through disease modifying drugs and medications that combat specific symptoms. MS affects everyone differently; no two cases are the same. My personal battle with MS started at the age of 11; however, it wasn’t diagnosed until 8 years later because up until recent years, it was not considered a pediatric disease despite the warning signs and symptoms that were present.
The symptoms vary from person to person. My symptoms are a right hand tremor that comes and goes, occasional double vision, occasional full body tremors and severe fatigue. Most are kept under control with medication and are not very noticeable.
A diagnosis of MS doesn’t mean that life is over. I was asked once if there are days that I don’t think about it. With the daily injections it is impossible not to think and worry about the MS. I have learned, however, that we cannot afford to play the “what if” game. There are an infinite number of “what ifs” in the universe and if we spend our time worrying about them we miss out on life. No one knows what tomorrow will bring whether you have a chronic disease or not.
On top of being someone with MS, I am also a right above-knee-amputee. I had a routine operation on my knee that turned into a nightmare when I developed a life threatening infection. I was rushed into the first of many emergency operations and placed on IV antibiotics for 6 weeks. Unfortunately, the infection kept returning.
The last four years of my life have been filled with trips to the ER, 22 operations on my leg, fear and pain. In August 2007, I decided to amputate my leg, a decision that has forever altered my life.
Some say it was a brave and mature decision especially for a then 23 year old. I don’t see it that way. I see it as saving my life. I’ve always been acutely aware that infection kills. There are also many things that I want to do in life that I cannot do in constant pain with a straight stiff leg. On September 10 2007, my leg was amputated and immediately I looked and felt healthy for the first time in four years. I do not now nor will I ever regret my decision.
I am an amputee and a person with multiple sclerosis but those things are not what define me. I am a writer, a photographer, a musician, and a student of life. I am a young person with big dreams and a bright future who just also happens to have one leg and a chronic disease.
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