Page 18 - 2021 Winter CMTA Report

Editor’s Note: This piece is excerpted from Jeff’s memoir, The Fun Master, which portrays his
struggles with CMT and his journey as caregiver to a son in fragile health. The book will be
published by SparkPress in 2021. Jeff wrote about his training routine in the Spring 2020
issue of The CMTA Report.

The Feet of Dorian Gray (An Excerpt)

BY JEFFREY SEITZER my twenties because my calf shoe salesman who suggested I
muscles had gotten so big from get plastic rather than metal
approached the waiting room vigorous exercise. braces. All of them gave a new
of the CMT clinic at Wayne “I can imagine,” he said. direction to my life. Sensing that
State University full of “Your calves look great.” this moment was important as
Ianticipation. In 30 plus years I raised my eyebrows, sur- well, I worked hard to concen-
struggling with CMT, I had only prised anyone would say that trate on what he was saying.
met one person outside my about my calves. I asked him if “Your case is better than
family who had it. I imagined he agreed with the neurologist most CMTX cases,” I heard him
being greeted there by a throng who told me that in some cases say. “There is less atrophy. Why
of fellow CMT sufferers eager to people plateau at a level with is unclear.”
share stories and exchange shoe
limited decline, then experience “That’s a lot to take in,” I
tips. Alas, the waiting room was
a precipitous decline much later. said, glancing at my notes, which
empty.
“Am I merely waiting for the looked like an experimental
After a few minutes, I
other foot to drop, so to speak?” poem. Content to let my wife
was led into an examination
I asked, secretly Janet, family science
room, where I was joined by
pleased with my play In 30 plus years officer, sort out the
Dr. Michael Shy, who told me,
on words. struggling with technical details, I
“You have the strangest case of
“I don’t think so,” focused on my new
CMTX we have ever seen. In CMT, I had only
he answered. “CMT is principal worry, the
terms of your neural response, met one person
slowly progressive, so difference between
muscle mass, muscle tone, you outside my family
your condition will my right and left
appear to have a very mild case who had it.
worsen. But you’ve sides. “If my left leg,
of Type 2. In a male, this is
established a certain the good leg, not the
rather surprising. By age 60, men
trajectory. Your degeneration right, is the lead indicator of the
with CMTX typically require a
should continue along the line degeneration produced by CMT,
cane or even AFOs to walk.”
already established.” then I feel I’m in good shape. Is
I explained about breaking
Jeffrey Seitzer and “Your case is interesting in that your sense as well?”
son Ethan out of the plastic leg braces in another respect,” he continued. “Perhaps,” he said. “We will
“To understand how unusual it have to study your case more.
is, let me go over some of the It may not be possible to deter-
most important aspects of your mine that conclusively. The fact
type of CMT.” that you’ve had encephalitis and
I was looking at him while CMTX, though, is highly inter-
he spoke, but my mind was else- esting. Your form of CMT
where. It was like a waking involves a protein, Connexin 32.
dream moving back in time. It is a little different from other
First, I was speaking with the proteins affected by CMT in that
neurologist at the University of it is located in both the central
Chicago, who said I might not and peripheral nervous systems.
even have CMT; then I was It is in a little different location
speaking with the mysterious in each. But there is a possible
stranger who told me about connection with encephalitis. In
reconstructive foot surgery; a very small number of cases,
followed by the 20-something some activity like high altitude

18 THE CMTA REPORT WINTER 2021