By Frank Bublitz
Yes, dear reader, my Charcot Marie Tooth (CMT) Disease variant is my own. In fact, it is named after me. It is CMT4F…which I declare is CMT4Frank!
Now if you believe that disease variant is named after me you will believe what I say to introduce myself at Open Mic Nights. I have married seven times, twice to the same woman. I have been a doctor, police officer, lawyer, businessperson, and a kidnapper. In 1978, and again in 2011, I was shot to death.
If you’re still reading you have probably guest that I have been an actor. However, it is hard to get roles now. Especially in musical theater. Though I have a “ deep…rich…powerful voice…” I cannot dance very well. If at all. Even walking onstage requires two sturdy braces, a lot of prayer, and a role that requires my cane to co-star. Such as Gustav Stossel in The Christmas Schooner in Marine City twice.
The Charcot Marie Tooth News website describes CMT as “… a progressive condition that causes the motor and sensory nerves to weaken.” Alan Jackson’s retirement tour was caused by his refusal to keep “…stumbling around onstage…”. Ozzy Osborne reported that he also had CMT, later changed to Parkinson’s Disease, and not the effects of hard drinking and drugs.
There is no cure for CMT and very few effective treatments. You might imagine for a formerly active man finding himself limited physically is frustrating. Prayer and worship help keep me going. But my Dad jokes and puns, some of which people actually laugh at, are another way that I face my condition and keep going.
My adaptive aids all have names. I had a red cane I called Candy and have a brown one I call Sugar. When I worked in a substance abuse treatment center I called my walker JW. But his real name is Johnny Walker Grey. I wear The Brace Brothers because the braces keep me upright most of the time.
I’m going to get two Tattoos, one on each wrist. The Tattoo on my right wrist will be my name and birthdate. My left will read “Fall Risk”. When at Marwood Manor rehabbing from a broken hip the therapy staff gave me a nickname. Since I rarely fell they called me “Weeble”, after the toy that “…wobbles but won’t fall down…”.
And I still laugh remembering a physical exam at U of M Hospital. A six-foot tall Swedish intern who paid for medical school as a fashion model forgot to stop palpitating my leg after a physical exam. I still remember how pink she blushed when I asked if she knew what she was doing. And how we laughed when I told her it was the most fun that I’d ever had at a U of M examination!
So when you face adversity try to laugh in its face. It works!
