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Living With CMT - Jonah's Story

Hi, my name is Jonah Berger and I am constantly working on a positive attitude. More on that later.

I am 50 years old and I live in DeWitt, MI. I am a husband. And the father of two. One daughter who also has CMT and a son who does not. My mother has CMT as did my Grandmother and a few cousins. We have CMT 1X in our family.

I am the National Youth Programs Manager for the CMTA and I love my job so very much. I get to work with youth who have CMT. I’m the Camp Director for the CMTA Camp Footprint. And a proud member of the tribe of the Funky Feet. I wrote a book called “He Walks Like a Cowboy” charting the path of my life with CMT. And I have a podcast by the same name.

Diagnosis and Journey with CMT

I was diagnosed with CMT at age 5. And for the majority of my youth, I did all I could to mask the symptoms. As a result of trying to hide my CMT, it always felt big and heavy to me. It was also exhausting because you come to learn that you can’t really hide from your truth. You can try to, but you never tend to succeed.

Over the course of my adult life, I have focused on acceptance. Learning to face my CMT head on and not to run from it. I wear shorts when it is warm and I ask for help when I need it. When I fall, I take a breath and then I get back up and keep going. And over time, the more I accept my CMT, the lighter it becomes. Accepting CMT means not only being okay with it yourself, but also learning to share it openly with others. Practicing how you talk to others about it and learning to be as comfortable with that conversation as you would talking about the color of your eyes. It is just a part of who you are.

My attitude about my CMT came mostly from my Mom. She taught me that you can accomplish anything you set your mind to. You just have to do it in your own way. I climbed the tallest mountain in Colorado once. I climbed it super slowly and I fell down a lot and I had SO much help from my friends. And yet, I made it to the top. Mostly, because I wasn’t trying to climb in a “normal” way. I was climbing in my way.

I am much tougher as a result of my CMT. Because I have to work so much harder to do tasks, it makes me strong. I get to see the true nature of people because of my CMT. If someone is immature and can’t handle my challenges, I move on from them. And all of the amazing people who have helped me over the years bring amazing gifts to my life.

Encouragement To Those With CMT

The bottom line here is that attitude reflect experience. If you have a negative attitude about your CMT, your experience will be negative. If you have a positive attitude, your experience will be positive. I can sum it up in one statement…..

“It’s not about what happens to you, it’s how you deal with what happens to you that matters.”

Jonah Berger is 50 years old and lives in DeWitt, Michigan. He is the National Youth Programs Manager for the CMTA. He is the author of; He Walks Like a Cowboy. A book detailing the journey of life with a disability. He also wrote The Strangest of Places, a collection of stories from his trail. He is a Father, Husband, Camp Director, Drummer, Motivational Speaker, and champion of the unusual. He has spoken all over the country spreading his message of facing your challenges with positivity and determination. “There is an amazing amount of strength to be found in the experience of weakness.”

You can learn more about Jonah's story in his book: He Walks Like A Cowboy

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