Socially living with cmt

2583_1112631178357_5656295_n My daily life became more challenging as time passed. Not a day went by that I didn’t wish I was someone else — with a love for life, more spring in my steps, and the will to make and accomplish goals in my life. Sad to admit this. I strived to make the best of what I had to work with. How I handled my physical disabilities was totally my choice, but keeping my problems a secret created an extremely difficult life. I made certain I looked fine – completely normal — to everyone. I kept Charcot Marie Tooth a complete secret – no one knew my condition, not even the doctors. I stubbornly ignored all the warning signs and symptoms. That was the life altering mistake I would later regret.

I lived with my grandmother, a single young man too embarrassed to let others know how I really felt – scared, overwhelmed, in so much pain. I was missing the best days of my life, spending most days in a chair, my feet elevated, nursing yet another infected wound that had flared up on one of my feet. Briefly, my feet would eventually take a turn for the better, but a few weeks would pass and, sadly I would be in pain and sporting an open wound yet again. These open sores are very difficult to explain to people who are not familiar with neuropathy. The feeling of no feeling, complete loss of sensation in your feet, yet at the same time, constantly throbbing in pain, falling and pitching, and just plain miserable. How do you explain no sensation yet throbbing pain simultaneously? When I developed an open wound, I could never feel it forming. I would notice a soiled sock and instantly my heart would drop. I spent more time searching for a place to prop up my feet and less time enjoying my young life. I imagine people assumed I was an introvert, a recluse, preferring to stay alone and inside even on an inviting, warm summer day.

I turned to social media to for most of my teenage life. The internet was a Godsend to me. I could sit and recover, yet be plugged into an active life. As a young man, I had dreams of becoming successful and meeting someone who would make me happy. In an odd sense, this made me happy and I felt active again. I made lots of internet friends who only knew me as being a funny guy, always joking and full of life. My friends never suspected the funny, full of life guy was hiding tons of hurt and anguish. I made sure to keep my distance from people, never revealing how sick I had actually become. I wondered if I would ever meet a special lady with whom I could be 100 percent “me”. There was always going to be that fear of pushing away someone for whom I cared. These are thoughts a young man should never have to experience.

I received a message via. facebook from this beautiful girl I had never seen before so instantly, I became overjoyed and hopeful. We communicated back and forth, I put forth all the witty charm I could muster and finally said the words, “would you like to hangout sometime?” A reply of yes, and I was glowing with hope yet nervous she would discover my secret CMT disease. The next day I jumped in my ol’ truck and was on my way to pick her up for the first time. I carefully planned a date that didn’t involve anything physically demanding. I sure didn’t want to give away my bum health immediately and risk pushing a good looking woman away from me. We rode around for hours just talking, it seemed so nice to finally connect with someone and seek comfort. For the meantime, my mind was at ease, not pondering thoughts about health and wellness. For the first time in a long time I was dulling the pain with happy thoughts.

That night, I had no intentions of developing feelings for her but I did. I honestly could not stop looking and smiling at this beautiful girl. I was being torn between a great girl and a degenerative disease. I chose the girl and decided to try and hide the cruel effects of CMT. I could not risk losing this special person. I had no idea what a meaningful blessing she would be to me. Lord knows I was occupying my mind with dreams and hopes of joy and not poisoning my thoughts with CMT. My life’s problems were beginning to simplify or so I hoped so…

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4 comments

  1. Thank you Timmy for all your posts… I relate so much to your life ! I think I couldn’t experience what you told us on this post because unfortunately I have alway had really severe (and visible) symptoms because of CMT… I have tons of friends so I can’t complain, but I feel like I might stay alone all my life (and not find the love of my life) because people don’t see me that way, all I have is people starring because I walk like a very drunk woman..

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