How to Talk About CMT

Jonah Berger

Jonah Berger

It is one thing to travel through this life with the unstable feet and uncertain balance of CMT. It is another thing altogether to share that experience with others. In fact, based on personal experience and chatting with my fellow CMTers over the years, I think sharing the path openly is one of the greatest challenges set before all of us.

There is a real challenge to being abnormal in our society, which so values normality. There is a pressure to conform and a stigma attached to anything that makes us different. The irony is that the things that make us different are the very things that make us great. Life with CMT teaches us wisdom, humility and grace. It makes us stronger from surviving the challenges. And it shows us the appreciation of true ability. We don’t take strength for granted in this tribe!

Jonah Berger - Braces

Jonah’s Braces

How then do we talk about it? How do we get it out? How do we share it with others? Three thoughts:

  1. Be brave. You need a lot of courage to open up about this personal challenge. It is scary at first, but I assure you that the more you do it, the easier it becomes. Human beings are curious by nature. That is why people stare at our leg braces or the way we walk. So FEED their curiosity with information. Teach them and send them down the road with the knowledge to replace their silent judgments.
  2. Practice your speech. Rather than making it up on the spot, have an explanation ready when the topic comes up. I explain that CMT is a slowing down of the messages from the brain to my muscles. That the nerves aren’t able to get the messages through fast enough or clear enough, so over time my muscles get weaker. I try to stay away from scientific talk. Keep things simple. Then I always leave them with a statement about why it could be worse. Let people see that you are facing your challenges. Seek out the people who are obviously curious or watching you and be the initiator. Go right up to them and explain what you have—especially to kids. They are so open. Help keep them that way. Teach them to learn about differences and not to fear them.
  3. Remember that everyone has special needs of some kind or another. Every single person walking this earth is dealing with the burden of challenges they’d like to put down. Whether you can see their challenges or not, they are there. Everyone is nervous to talk about them. And everyone feels better when they have the chance to get it out and be understood.

When I first started to wear leg braces in my twenties, I wore jeans even in the summer to cover up my differences. Over time, I realized that I was only fooling myself. You have to be who you are. It is the only way to live happily. Having CMT is hard enough and the burden of keeping it to yourself is a waste of energy. Get it off your chest. Teach others about CMT and learn about the unique challenges that others face. This world would be a better place if we learned to celebrate our differences. Figure out where your current comfort zone ends and go beyond it. The benefits of being open are worth the effort, I promise you!