Courage To Believe

Sept 22 My CMT Journey continues....

I have broken many plates, glasses, coffee mugs and casserole dishes. I have spilled drinks, dropped coins at the checkout and even dropped the tube you put your money in at the drive through at our local bank. Yup had money in it and had to have a bank teller come out and get it for me as it rolled under my car. Even had a wad of money blow out of my hands while grabbing it from the teller window. Luckily I was able to retrieve all of it. When my son was born and the nurse brought my son in she asked, “Joel's mom?” I was getting off the phone so I tried to raise my hand but with bent fingers she thought I was pointing to the mom in the bed next to me. I could here my room mate saying, “Oh Dustin come to mommy”. “Nooooo”, I yelled, “That's my son, Joel”. Wonder if the nurse was having a Solomon moment, “Ok who's baby is this really?” When people wave and I wave back it looks like I’m saying “Power to the people” with my fingers curled. My hands have weakened over the years. I type with one finger and not very fast either. At the drive through I have to use both hands to grab a drink, even then I worry about dropping it. I have to use light weight Tervis Tumblers, preferably with a handle. Sometimes I actually bring my own cup with me when going to a restaurant as it can be embarrassing spilling water or some liquid on my food or worse yet someone else. “As CMT progresses, contractures in the hand can lock the fingers in a flexed position. Making it extremely difficult, painful and frustrating to get your hands to work properly. ” (MDA Charcot-Marie-Tooth Disease). In 2001, Joel, graduated from high school and vo-tech. He loves tinkering around with devices and took two years of electronics. Unfortunately due to CMT my son had a difficult time with employment. He went through more jobs in the first 5 years of graduation than I ever did in my life time. Florida has the right to work state and well if your not fast enough out you go. It was a very frustrating time for him. Joel worked at various jobs and gave it his all. Unfortunately the work force is not as forgiving as it was when I was younger. We live in a different time and disabled people have it harder in finding and keeping employment. Joel applied with Goodwill who helps train and place disabled people in companies that are handicap friendly. The Goodwill company seemed to go through more counselors than they did in providing work outside the program. Another frustrating time. Eventually, Joel started a car detailing business where he worked part time and went to college. It took quite a few years but he graduated with an AA degree in Business. Today Joel continues to be self employed with 239 Mobile Detailing where he works on boats and cars. He is hoping to build up his business where he can run the company and hire out workers. To be continued. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge