I recently joined Daily Strength as a way to search out others who have lived and struggled their whole lives with CMT. I have experienced the many kinds of physical losses you have lived through in your own life times, and the loss of past relationships. I have read through many of the discussions in the CMT area and agree with many of your insights. As a young man I too wanted to hide my weaknesses from the world, but believe your weaknesses are seen by most people, but these people also recognize your strength of character.

At the age of twenty my CMT was affected by another neurological factor which accelerated my CMT--taking away most of my muscle strength in my arms and legs--leaving me in such a weakened state I had to use a wheelchair and sleeping 18 to 20 hours a day. This 2nd factor had the Mayo Clinic stumped, but my doctor offered a chance to combat this 2nd factor--by taking mega-dosages of prednisone and immuran. I waived my rights not to sue if these medicines destroyed one or all of my different body systems.

In time the medicine reversed this 2nd neurological factor and I regained my ability for walking, the 4th time I had to reach myself how to walk. It was during this time where I had a crisis of faith--I despaired at having lost so much of my life to CMT, or so I thought, loss of muscle strength, loss of a relationship, loss of my dreams for the future. I begged God to let me die and take away my pain, or for God to give me some hope. God chose hope--He gave me a burning desire to seek out Jesus.

With hope I began to dream again about my life and the future I faced in life. Living with CMT has given us all many challenges, it has shaped much of our lives, but it also has the potential for great strength, many people will benefit from your strength and courage.

Just as I couldn't understand exactly how my mom lived with pancreatic cancer, it is true people find it hard to understand how CMT challenges the limits of our body. As a special education teacher for 26 years I once held in my arms a 20 year old man the size of an infant--this young man healed a big hole of pain in my heart. God showed me that my weakness and loss I had for life was miniscule to this young man. Some family might liken me to being stubborn and strong willed--which also means I have this drive to be independent--earning money to provide for my needs, etc. God showed me that every life has value, and all are loved by Him, even those who live their lives out totally dependent upon another person.

Today, I see my CMT as a curse, it has isolated me from others, some by choice, others because I chose to devote my energies in one direction of life over another. At school I gave my 12 hour days to helping my students reach achievements in their lives, so I never made many friends within the schools I taught. There isn't a day that I don't ask God to be restored to full physical health, but with the caveat of this being God's will for me, not my own wishes. CMT has kept me close to God, my whole focus in life is in serving His will in the world. My dreams are still guided by the effects of CMT and I thank God for it.