The ability to be disabled
by Jonah Berger, CO, U.S.A. (Dec. 2001)

My name is Jonah Berger. I am a youth educator and I live in Boulder, Colorado. When I read in the August issue of the CMT Newsletter that there was a call to share emotions in regards to CMT, I felt the urge to share my thoughts with others who understand. The topic asks, among other things, for thoughts on how we cope with CMT and to me, that is a most important topic. It seems that how you cope with any struggle dictates how large or small a struggle it turns out to be.

I can’t presume to tell others how they feel. Each person handles this challenge in his own way. I can only share my experiences as I have lived them and hope that in some way, something can be understood from them.

I have had the benefit of knowing about CMT since I was young. I have been able to grow up with the knowledge of why I was unable to always keep up. That helped to minimize the frustration factor. And throughout my life, there have been two very clear reasons why I have been able to cope like I do. The first is myself. The second are my loved ones.

As for the loved ones, the greatest mention has to be my mother, Marilyn. She, too, has CMT, and it was by her example that I learned how to deal with this challenge. She taught me right from the start to be up front with people; to be open about CMT; to explain it clearly to others as a way of easing their discomfort, and in turn, our own. She was one of the busiest mothers of all my friends and so rarely complained. She had pain, she got tired, but she refused to slow from it. She is a champion.

The next was one of my first true friends, Jason Conn. We were in summer camp at the age of 15. One day out of the blue, he asked me why I walked so different. I made the choice to tell him the truth. I explained to him my challenge and how it works. I helped him to understand why it was hard for me and what my limitations were. At one point, I looked over and Jason was crying. He was 15 years old and crying for me, obviously moved by my honesty and clearly better able to serve my needs by understanding more. It was his understanding that helped me to learn to open up to my friends about this, not to shy away from it.

Since Jason, I have had a string of countless friends who have, for the most part, been an immeasurable strength in my coping process. Sometimes by helping me over tough terrain while hiking. Sometimes by checking in with me during time of obvious need. Sometimes by simply asking and listening to my feelings and struggles with CMT. True friends are gold to those of us with a physical challenge. Their acceptance has helped me to further accept. In some ways, I call CMT a “Truth Filter.” Only true hearts can see my challenge and get past it. Both friends and girlfriends over the years, all who truly love me, have to understand and accept my challenge. And those who aren’t true, are filtered from my life.

An honorable mention in the loved ones category has to be made to those strangers over the years, who, instead of just staring at me or quickly looking away, actually ask me why I walk like I do, actually ask me why I have braces on my legs. I much prefer a person to address a concern on their mind instead of just staring. Information and empathy eases judgment, and helps people of different lives coexist.

The second and most important coping mechanism is myself. It all starts with me. I have learned in my 29 years that the best thing I can do for myself and for others is to accept my situation and come to grips with the facts that I cannot change. I have a disability; I have to wear braces to get around; my feet and legs and hands look different from most; there are a few physical deeds that I have trouble taking care of on my own; I need help sometimes; I need to be listened to as I vent my frustration sometimes, etc. In order to deal with these things, you have to accept them. You have to stop fighting the things that you can’t change and save your precious strength and energy to fight the things you can change. This is not easy. It has taken most of my life to accept things, and I’m nowhere close to being done. But the more I accept about my situation, the better able I am to focus on what I can do, and to help others around me to understand. To be wide open about it is so cleansing. I am as comfortable with it as I am that my hair is brown and my height is 6’2". CMT is a part of me, of who I am, and by far the best way to cope with something is to accept it.

The older I get, the more I challenge myself physically. I am not about giving in. I am about fighting this by staying active. By accomplishing physical tasks that are easily written off for someone with my legs. By trying to be an ambassador to the world on behalf of the physically challenged. To do my small part to help people to understand what it’s like and why it is nothing to be afraid of.

It takes a lot of ability to be disabled in this world, emotional and physical courage. And the acquisition of this ability, of this courage, is our life’s challenge. Good luck to us all....