Searching for answers

Maubry MillThe days passed. My condition deteriorated. I suffered chronic pain, mentally and physically. The challenge to maintain the façade became almost too tough but I continued to shove reality into a distant corner and slap on the happy face daily. The stress definitely took its toll on me. No matter how tough I presented myself to the world, many times I found myself slipping. I was beginning to crater. I may have fooled some people, family and friends, but mostly I fooled myself. When asked, “Timmy, are you ok?” or “Timmy, how did you hurt your leg?” I shrugged it off, attempting to redirect their attention, laughing and changing the subject. I breathed a sigh of relief, believing I was successfully avoiding burdening anyone. Deep down, I was scared to death, frightened at how sick and disabled I was becoming, frightened it was getting more difficult to hide.

One of the main reasons I never received the medical care I needed was the expense. Medical expenses were a huge stumbling block while I was growing up, coupled with the lack of knowledge concerning my condition and the lack of treatments available for patients with CMT. Patients with CMT were often misdiagnosed and actually still are today. Many people with CMT are actually diagnosed with Multiple Sclerosis. Multiple Sclerosis is an autoimmune disease that presents with almost identical symptoms. When I was a child, no doctor treated the actual disease – the CMT. Instead, doctors focused on treating the symptoms. Sadly, to this day, this still occurs and to this day, there is no real treatment or cure for CMT or consistent success in treating the symptoms. Patients find relief experimenting with different drug protocols and therapies but no drug or therapy seems successful long term. So patients with CMT tend to get shuffled around the medical community simply because no one knows what to do with them. With an inherited disease like CMT, the entire extended family is affected with multiple patients in every generation. Oddly peculiar to families with afflicted with CMT, collectively, the extended families feel shamed by the disease. Strangely, entire families attempt to hide their family affliction of CMT to the public. It has only been in the last couple of decades, literally, patients with CMT are finally stepping out of the shadows, many times, much to their families’ chagrin, and purposefully creating awareness of CMT in the search for answers and a cure.

As a little kid, and to this day, late at night, or in moments of weakness and insecurity, I secretly ask myself those looping, haunting questions: the “why?”, the “what if?”, the “how come me?”. Now, as when I was little, I force my mind to silence this absurdly useless thinking. This is my life and I choose to be proud of my life. In spite of my challenges with CMT or because of them, I continue to push through my limitations every day.

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3 comments

  1. Yes I am scared. I am 53 and have lived with CMT all my life. Have passed in on to my beautiful daughter 20 year old, oops I forgot almost 21 years old (we are counting the months).
    I loved your blog, in fact I want to forward it to our lawyer (let the judge read it) as we our fighting for disability for my daughter, and we have already be declined twice. Will be following your blog, can’t wait to see what you can do!

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