For many years, my childhood bedroom featured a photo of Mr. McFeely, the friendly mailman from the beloved children’s television series “Mister Rogers’ Neighborhood.” It was as a souvenir from a meet and greet my family attended. While I don’t recall the meet and greet itself, which we must have attended when I was very young, I do remember the times spent sitting on our family room floor with “Mister Rogers’ Neighborhood” playing on our television.
I remember that regardless of how I was feeling, whether I was elated about the possibility of a macaroni and cheese dinner or troubled over relationships with friends, Mister Rogers always provided calm and confident assurance that everything would be all right. However, as an adult with Charcot-Marie-Tooth disease, I’ve come to realize that it’s not just childhood that is sometimes filled with scary, confusing, and frustrating things.
Indeed, whether it’s with the stresses of everyday life or the stresses unique to those of us affected by chronic diseases, kids aren’t the only ones who could use reminders that everyone is worthy of love, and that we can overcome any hurdles life throws at us. We could do well to remember what Mister Rogers taught us with his television program and by how he lived his life.
While there are many lessons and takeaways from Rogers, I’m reminded of one anecdote from 1969, when Hartford Gunn, then president of WGBH in Boston, asked Rogers to speak about the importance of public broadcasting shows during a government subcommittee hearing to debate the merits of public television funding.
Up to $20 million was at stake, as the Nixon administration wanted to cut public broadcasting’s budget to focus on Vietnam War efforts. Rogers defended the importance of his job by distilling the essence of what his show was about in a short, impromptu speech.
“I give an expression of care every day to each child, to help him realize that he is unique,” Rogers said to a particularly skeptical senator from Rhode Island. “I end the program by saying, ‘You’ve made this day a special day by just your being you. There’s no person in the whole world like you, and I like you just the way you are.’
“And I feel that if we in public television can only make it clear that feelings are mentionable and manageable, we will have done a great service for mental health.”
Rogers secured that $20 million by arguing that the ability to recognize and address our feelings and fears is important and worth fighting for.
Whether it’s about life as a child, life as CMTer, or just life in general, Rogers taught us that whatever difficulties we may face, our experiences should be mentionable — not taboo or stigmatized. That which is mentionable is indeed manageable.
Rogers often used this mantra to describe the mission of his beloved children’s program. It wasn’t a catchphrase he had coined — Margaret McFarland, Rogers’ mentor and director of the Arsenal Family and Children’s Center in Pittsburgh, Pennsylvania, gets that credit.
Still, “mentionable and manageable” was a philosophy he wholeheartedly adopted, and one of the great focuses of his program. I believe it’s advice that we shouldn’t relegate only to children.
Before I started writing about CMT, I hadn’t discussed it too much. I didn’t know much about myself or my family’s history.
Even now, I sometimes hesitate to talk about new struggles I have with my body, because CMT is such a confusing disease to experience that it’s difficult to say whether certain symptoms are from CMT or not. As one song Rogers wrote says, “Some things I don’t understand. Some things are scary and sad.”
Furthermore, when we take a wide-view perspective of the disease, we learn that we better start talking about CMT more if we as a society hope to offer the best care and treatment for our loved ones. After all, how can we hope to manage the disease if people aren’t even mentioning it?
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.
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