Christina's World of CMT

Christina's World by Artist Andrew Wyeth 

Andrew Wyeth’s 1948 painting “Christina’s World,” depicts a woman crawling in the grass near her gray and dismal farmhouse in the distance. Wyeth would observe his neighbor, Anna Christina Olson, crawling frequently around her treeless property in rural Cushing, Maine.

Ranking as one of the most iconic paintings in modern American history, it was always assumed that Olson had Polio, a common infectious disease that causes muscle weakness and in some cases the inability to move. Olson told Wyeth at the time that she preferred to crawl everywhere rather than use one of those raggedy wheelchairs of the day.

In 2016, a neurologist at Mayo Clinic in Rochester, Minnesota, decided to review the health details of Olson’s life, which led him to believe that Olson had a form of Charcot-Marie-Tooth (CMT) disease instead of Polio.

Unlike Polio which moves fast and invades the central nervous system, Olson indicated that the disease moved slowly throughout her life, affecting her feet first at age three, causing her to painfully walk on the edges of her curling feet.

Foot deformities along with a decrease of nerve sensations in the foot and toes is probably one of the most classic signs of CMT, according to medical professionals. Olson also indicated that she would burn herself while sleeping too close to the wood burning stove at night. Many with CMT also have less feelings and sensations in their legs, arms, hands and other parts of the body.

I also burn myself very frequently after accidentally touching the hot stovetop. While I do feel the sting of pain from the heat, it takes me a split second longer than the average person to pull away, which causes more cell damage than what a healthy person would experience.  

I also remember burning my toe many years before my CMT diagnosis. I don’t remember how I did it, but I do remember having terrible pain for several hours, prompting me to send a donation the next morning to a burn organization for kids.

The incident later turned into a little joke with my wife and I after we began to laugh hard during a television episode of “The Office,” when the lead character Michael Scott burned his foot on a George Foreman Grill. Scott was angry because his coworkers didn’t show him any sympathy during the episode.

One of my favorite presidents, Franklin D. Roosevelt, also may have not suffered from Polio, according to doctors and historians.  Many believe he had something called Guillain Barre Syndrome.

I was first falsely diagnosed with Guillain Barre. The syndrome, which is a bacterially induced autoimmune disease, is extremely scary because the pain hits you almost overnight and often experience temporary paralysis. 

I met a local police officer who found himself paralyzed in a hospital bed for almost six months due to this illness. Like many with Guillain Barre, he eventually recovered fully and lives a normal life again, including working on the police force. Scientists have leaned that a small percentage of people who receive the flu shot can develop Guillain Barre.

Roosevelt was 39 years old when he woke up one morning in pain and found his legs and arms to be paralyzed. He said he was out jogging the day before and felt great while doing physical activities.

The quickness of the illness and paralysis later led doctors to believe decades later that it was Guillain Barre rather than Polio, which is slower and doesn’t usually affect adults over the age of 30. Roosevelt did all he could to keep his illness a secret from the public. He would tell press photographers to “Take no photographs of me boys,” until he sat down or held his body up against a podium. It’s amazing that the press at the time respected his wishes.

One famous individual who does have CMT is Julie Newmar who played the sexy Catwoman in the Batman television show in the 1960s. Newmar recently told CMTJournal.org that she started to feel fatigued and movement began to feel tougher toward the last episodes of the television show. She later found out she had CMT. Newmar eventually learned to live with the disease and finds it helpful to stretch daily as a way to keep the illness from progressing.

Newmar, for many, is living proof that people with CMT can be superheroes.

By Joseph Ruzich with Editor-in-Chief Emily Ruzich.

Julie Newmar played the Catwoman 

in the Batman television show in the 1960s

It's not about teeth

Driving to a medical appointment 

with my wife

Charcot-Marie-Tooth [CMT] disease. I often hate the name more than the symptoms I endure from it. The inherited peripheral nerve disorder was discovered by Frenchmen Jean-Martin Charcot and Pierre Marie along with Howard Henry Tooth of England in the late 1800s.

The Frenchmen and Mr. Tooth bit me in the ass for the first time four years ago. I now get around with a cane, a walker and an electric scooter during special outings. The disease causes excruciating pain in my lower back, feet and hands. Those details I will share in a future blog because I want to use this time to bash Mr. Tooth for causing confusion about CMT.

Many individuals and even doctors have never heard of the disease. Some doctors have even told frustrated patients it’s a “teeth disease,” according to a few friends with the disease. And CMT happens to be the most commonly inherited peripheral nerve disorder, according to the Muscular Dystrophy Association. It affects about 1 in 2,500 people. That means many small Midwestern towns, for example, with a population of that amount will have at least one person with CMT.

Why aren’t more doctors aware about it? I often wonder if Mr. Tooth’s last name is to blame. Doing a little research, however, led me to find other numerous diseases and syndromes with crazy names. For example, Dandy-Walker Syndrome brings to mind someone with a “hip-style of walking.” The disease is actually a brain disorder and is named after its discovers Walter Dandy and Arthur Earl Walker.

Take the name and ego out of disease titles and disorders and the medical field will come up with more names like Pseudopseudohypoparathyroidism, which is a bone disorder. Try saying that one to a friend or a person in the medical field. Maybe the solution is to name diseases and syndromes with a title that echoes its symptoms more. I like the name Saturday Night Palsy. This disorder involves a person in deep sleep who often lays on their arm causing injury. It often occurs with alcohol intoxication, according to medical sites.

In my quest to bring about more awareness of CMT, I ordered an ink stamper with the words “Find a cure for Charcot-Marie-Tooth disease.” I now stamp all pieces of mail leaving the house.

I recently was about to do something illegal with the stamper, but my wife, Emily, put a stop to it quickly. I told her I was going to place a stamp right above the men’s pisser when I go to the restroom at the pain clinic at Rush Hospital again.  “Every male doctor will see it,” I told her with enthusiasm. “It will make them more aware and may look it up on the web. Maybe you can stamp one in the women’s bathroom.” She said “wrong idea because they will figure out it was you. They don’t have a lot of patients with CMT.”

She remembered that my doctor informed us that the bustling clinic only treats one other individual with CMT. I needed to go to a pain clinic because I had a particular bad case of the disease, which caused pain after the nerves at the bottom of my spine became swollen and could not heal themselves.

What’s next I thought for getting the word out about the disease. I recently decided to start working on forming an organization that informs people in the medical field about the disease. And the first thing I will do is make them their very own ink stamper with the words “CMT: It has nothing to do with teeth.” Where they decide to place a stamp is up to them.

-- Joseph Ruzich has Charcot-Marie-Tooth disease and has been working in the journalism field for almost 20 years now. He is 40 years old and lives with his wife, Emily, in the western suburbs of Chicago, IL. You can comment at the bottom of the story or email me at josephruzich@gmail.com