Fighting a losing battle

Dad and I

My prior blog briefly covered my first 30 years living with CMT.  Today I am sharing the next few years, a great life spent dodging countless CMT curve balls.  The mental anguish competes with the detrimental physical aspects of this terrible disease.  I spent lots of down time, patiently waiting to heal injuries, wondering — the what if’s, the “I wish I would have done that’s.”  This pesky, negative thinking occupied my brain much of the time.  My mind would wander off during conversations with people intently sharing their stories.  I learned to disguise my mental AWOL forcing frozen smiles, nodding, and adding an occasional “yes,” or “really?” at appropriate times to prove I was actually listening.  (My apologies to these people of course!)  Practice makes perfect — I was getting rather proficient at masking pain and hurt and pretending to be involved.  Unfortunately, mental fatigue began to take it’s toll.

Shortly after leaving my job at Walmart, I started visiting doctors searching for options to improve my health.  I was given a prescription for custom made orthopedic shoes. My foot deformity was extensive with very high arches, curled hammer toes and bone growth on the side of my foot, painful stuff to say the least.  The shoes were ready made in a shop but had to be customized to my feet.  With some tweaking by the podiatrist, I was ready to go.  Surprisingly, these shoes felt really comfortable.  But, as a fashion statement?  Well, maybe for Frankenstein.  Clompy, scary shoes — black leather bricks, heavy as anchor weights, exhausted most of my energy, as if I had any to spare.  Thank God I had already graduated high school.  I can’t imagine attending high school in these ugly shoes and dealing with the social trauma, too.  I already had quite a bit on my plate.

A year passed.  Now, the shoes were so worn out they were literally falling apart. Medicare would not cover the cost of replacing them and I could not fork out another $1,500.00 for custom made, orthopedic shoes. If I were diabetic, Medicare would have covered the expense.  To me this seemed so unfair – my disability did not matter.  This decision by Medicare hurt me very much.  So, desperately needing another pair of shoes, I was forced to wait.  Purchasing another pair at this time was impossible.  Back to $20.00 sneakers, constant, intense pain, and faking a positive attitude to the world, pretending to be normal, pretending to be happy.   My foot deformities – abnormally high arches, curled, hammer toes – coupled with poorly fitting shoes caused ulcers and callus buildup on my feet.  Foot drop also contributed to these issues.  Foot drop is caused by loss of nerves and subsequent muscle deterioration in my ankles and feet.  With foot drop, when walking, I have no control over the strike pattern of my foot.  Think of a floppy, broken hinge.  Gravity brought my feet to the ground, and my feet landed however they landed, without any control whatsoever.  The ulcers on my feet never healed since they were constantly being irritated.  Doctor’s orders over and over, like a broken record: Off your feet, take it easy until the sores heal, you will be OK.  So much idle down time to think.  I was a young man.  I didn’t want to spend my life sitting in a chair with my feet up like an old man, contemplating “if only” and “what if.”

Charcot Marie Tooth is a peripheral neuropathy disease affecting the nerves outside the brain and spinal cord. CMT related neuropathy begins in the extremities like toes, feet, fingers and hands, in varying degrees of severity, from one patient to the next. I always wondered why my feet were totally numb from my toes to my ankles.  Now, I know.  As soon as a sore would heal, another would appear.  I could not feel the sores, even when they became infected. The only thing I could do is use a mirror to check the status.  This caused me such mental torment.  I hoped for healing only to discover new sores daily.  It is beyond words attempting to share how really scary and out of hand this condition became and I just wished so much for it to go away.  Of course, it never did.  A local podiatrist would see me on a weekly basis and trim my ugly feet, wrap them in bandages, and send me home.  My regularly prescribed, cocktail of antibiotics would temporarily help, but this was just buying me time.  No doctor ever addressed the actual root cause of the problem, my deformed feet, or the CMT.  Instead, they treated the symptoms, over and over again.

I’m not about to tell you some days were better than others.  That would be lying.  I often wonder what others feel like when living a life forced to focus on an uncontrolled and relentless medical condition.  Think this: driving a car down a winding hill with no steering.  Even at the wheel, you are forced to be the passenger.  No control.  I had no control over my health or planning my own daily life, even after seeking help countless times and following doctors’ orders exactly.  My dad and I shared a lousy disease.  But I felt completely isolated and extremely pissed off.  I was physically exhausted and becoming more and more mentally exhausted from the frustration and lack of control living with this nightmare disease.  Pretending to be happy, always wearing the pasted, fake smile, eventually took too much effort.  Pretending simply became too hard.



  1. Wow-that sounds really awful. I had no idea you had to go through all that. You are very courageous to share your struggles with others. Even though we have never met in person, I feel I’ve gotten to know you little bit via Facebook and our emails. I value our friendship very much and you know and I am praying and rooting for your success!

  2. I wish I could send this to Medicare and let them see first hand, how their ridiculous rules can devastate a life. This brought tears to my eyes and I could read the total lack of control over your young adult life. I’m so sorry the whole system let you down.

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