Mister Rogers Taught Me These Lessons About Managing CMT

At the beginning of every episode of “Mister Rogers’ Neighborhood,” Fred Rogers walked through a door and greeted his audience by singing the show’s theme, “Won’t You Be My Neighbor.” 

I’ve always thought the song contained a sweet sentiment: that we should appreciate the beauty we live in.

Until recently, I had overlooked the importance of one line in the song: “So let’s make the most of this beautiful day.” It’s a call to respond to the beauty in the world — to celebrate it and participate in fostering it. It’s an action that anyone can undertake.

I recently finished reading “Kindness and Wonder,” by bestselling nonfiction author Gavin Edwards. It’s a biography of Rogers and reflections for those who may want to be inspired by how Rogers lived his life with intentional kindness.

Prompted by this idea, I’ve compiled a list of my own takeaways from what I’ve found special about how Rogers lived his life. I find these takeaways particularly relevant given the challenges Charcot-Marie-Tooth presents me. 

‘You learn by doing, and we did a lot’

Rogers was a pioneer of children’s educational television programming. However, he wasn’t what many executives at the time perceived as a natural fit for TV. He wasn’t in show business when he started and he didn’t fit the archetype of a showman of the time. He was simply a minister, a musician, and a fellow who cared greatly for children.

However, Rogers was willing to try new things, to learn new things, and to hone skills he picked up while on set. Through experimentation, he perfected what eventually became staples on any Mister Rogers show, from puppet personalities to the practice of removing his hard-soled shoes and replacing them with sneakers. In his own words, “You learn by doing, and we did a lot.”

I think that too often, life with a disease such as CMT can feel quite restrictive. While life is filled with adventures and opportunities, for many CMTers, it can seem as if we’re constantly hearing the message, “Sorry, this isn’t for you.” It’s easy to follow the temptation of settling into a sedentary routine due to the fear of failure or embarrassment. 

This is a mistake. Life’s beauty demands celebration and participation, and fear isn’t the appropriate response.

I’d like to think that it’s through doing, exploring, experimenting, pushing limits, and embracing struggle that we find new skills, niches, and ways to excel.

Stay close to your source of joy and inspiration 

In the 1950s, Rogers co-hosted a show called “Children’s Corner” for the local public broadcasting service WQED in Pittsburgh. It was in many ways a forerunner for “Mister Rogers’ Neighborhood” — while humble, it also was brilliant. 

In 1954, NBC needed a program to fill a Saturday morning slot for four weeks. Recognizing the brilliance of “Children’s Corner,” representatives from NBC approached Rogers and his co-host, Josie Carey. They asked Rogers and Carey if they would create a short run of their program in New York that NBC would broadcast nationwide. 

Rogers and Carey took the opportunity. But while it would have made sense for Rogers and Carey to spend more time in New York every week to mingle with journalists and publicists, they stayed each week only from Friday morning to Saturday afternoon.

According to Carey, Rogers insisted on returning to Pittsburgh every week to go to church on Sunday mornings.

It’s a quirky anecdote, but Rogers’ insistence reminds me of something neuromuscular physician Raghav Govindarajan said last year at the Charcot-Marie-Tooth Association’s Patient/Family Conference in St. Louis, Missouri. To care for your health, Govindarajan said, it’s important to take a holistic approach, which includes looking after your spiritual life. This means finding a source of joy and inspiration and something to help keep us centered. 

Look to the helpers, and be one yourself

Rogers shared advice his mother offered to him when he felt in need of hope: “Always look for the helpers. There will always be helpers, just on the sidelines.”

Oftentimes, chronic diseases such as CMT can be discouraging. There are days that leave CMTers feeling defeated. However, I don’t think Rogers would like us to fester in that defeat. Instead, perhaps every now and then it’s useful and therapeutic to reflect on those who helped us along our way.

While being inducted into the television hall of fame, Rogers said, “Nobody gets to be a human adult without the investment of others all along the way.”

Perhaps we can take comfort in that, and perhaps it can prompt us into action. 

***

Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.