Sept 18, My CMT Journey continues...Day of Prayer for a cure for CMT

One day my sister, Patty and her husband, Ray, invited Joel and I to go down to the Yacht Club to fish. While enjoying the serenity and beauty of the sunset the peer started to shake. When I looked up I saw people running off the peer. I asked a man what was going on and he pointed in back of us, a storm was about to brew. My brother in law, my nephew, Scott, and Joel took what they could and ran off the peer. Patty and I were unable to run due to CMT. We grabbed our poles and walked as fast as we could. The wind picked up and blew with such force. I became fearful as the heavens opened with rain and hail slapping against my face and body. We were bombarded for several minutes with these stinging pellets. I couldn't see.  I knew Patty was walking in front of me so I grabbed onto her shirt. The wind was so fierce it felt like we were going to be been blown into the water. All of a sudden I started laughing. I thought boy what a comedy team. Just when we were about to get into safety, another glitch. When we got to the end of the peer, my fishing pole got snagged onto a tree. It's now starting to lighten and thunder. But, I continued to laugh as my sister and I got the pole loose. In the back ground I can hear the windshield wipers from the cars sitting in the parking lot. It sounded like applause. I wanted to turn to my audience watching us and bow. Later that night as I looked back on the day, I realized how despaired I would have been if I had to endure that journey alone. My sister being with me  truly helped ease the burden and even bring laughter. "Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble" (Eccl 4:9-10 TLB). We never know when a storm is about to approach. That is why it so important to stay connected with a support system. Not everyone has family members that understand their trials. I know my mom was devastated that two of her children had CMT. But what a blessing that my sister and I have each other and my son has the both of us to run things off of. My dad never spoke of his CMT. It was the unspoken elephant in the room. I have family members who still refuse to see the seriousness of this disease. They believe that I am being dramatic. Even sharing my story brings a negative response. Today thanks to technology and the internet, there are several chat rooms with people who struggle with what you are enduring. MDA and Facebook have support groups for CMT patients .Their is no healing in isolation but there is  healing in communicating with others. The importance of support is finding others who understand.

  http://www.cmtausa.org/url/sharkchallenge .. To be continued. If you feel led to give any donations for researching a cure, you can give online at or to the MDA http://www2.mda.org/goto/CMTChallenge 

Joel, Ray, Scott and Patty

Patty and I