Sept 13 My CMT Journey continues...

I always suffered from being self-conscious of my limp and the way my hands curled. One day at a support meeting, a woman came in just as we were about to start and she walked right up to the front of the room, grabbed a chair and sat down next to the speaker. At first I thought she was a bit arrogant, but then she shared her story in being deaf in one ear and hearing impaired in the other. She stated that she reads lips mostly and has to sit up close so she could see what others are saying. Now here is a woman who didn't let her disability stop her from getting the most of life. I was so taken by her boldness to speak so openly about her disability. I lived with the shame of not talking about it and hiding as much as you can. Eleanor, who liked to be called, Ellie, and I became fast friends. She became my sponsor, my mentor and my confidant. She is now with Jesus, but I sure do miss her. Ellie was larger than life. She had a lot of other health issues but she was always there if you needed someone to talk to. Ellie taught me so much, but mostly she taught me how to listen and laugh. We used to laugh how a deaf person could teach others to listen. Ellie was extraordinary and counseled many people who had issues similar to mine. I in turn shared my faith with her. God brought us together for a season of healing. ( Shame can be more disabling than having a disability. Some of the things I've gleaned from my support system is to surround myself as much as I can with people who accept me as I am. Who validate my feelings and try not to give advise or suggestions unless I ask for them. Most importantly, I learned not to let others negativity take up space in my head. Those who continue to pour out my faults in bringing shame will not listen to the words, “Stop”. It is up to me to put boundaries up and not give their actions, presence and words a lot of time in my life.) I was able to enjoy life and focus on the good not the bad. I was content and happy. My CMT seemed to be at a standstill, it wasn't getting better but wasn't progressing either. I enjoy being a mother. My life has never been more rewarding and meaningful than raising my son. It is also an emotional roller coaster of worry and helplessness. During the time Joel was growing up I continued attending twelve step meetings. I worked the program and applied it to having CMT. It also brought me closer to God. My mother became angry and distant towards God when both of her daughters inherited CMT from my dad. Yet, it was having CMT that brought me into a closer relationship with the Lord. That was a serendipitous act designed by God. In 1988, George, Joel and I moved down to Florida. A bitter sweet decision, as I was leaving one Eleanor to go to another. My mother's name was Eleanor as well. Patty, Ray and Scott followed a month later. My mother was elated. She always worried about Patty and I living so far away. Now she had us and her grandsons near by. Christine's prayers were answered as she used to ask God to bring her aunts and cousins down to Florida. Life was good. To be continued.....If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge

Happy Mom

Me, Chris and Patty