“Can you be the elevator guy?” I asked.  “When people walk in, introduce yourself, show them to into the elevator, push the down button and point out the way to the meeting room. Got it?”

“Whatever” he sighed, looking exaggeratedly bored.

I don’t get it. 5 years ago, he absolutely loved pressing those elevator buttons. I mean, it used to be a whole thing.  When he was with his little friends, they fought tooth and nail to be the one that got to choose the direction of our destiny. There would be meltdowns, tantrums until each had had a turn. Now he had the run of the place and he was bored?

I was a little anxious about bringing 10-year-old Yohan to my first CMTA support group.  At that point in time, we had not met anyone with CMT. This would be our first foray into the CMT community and we had no idea what or who to expect. Would there be only old people there, relying on canes, bending over walkers, or sitting in wheelchairs, completely disabled by the harsh effects of a lifetime of CMT? How would Yohan react to the young and/or old whose CMT had progressed to the point of curled hands, atrophied legs, skinny calves and high-arched feet?

I couldn’t help asking myself if  I was on the verge of making another very dumb and costly parent mistake?  I imagined the weekly psychotherapy bills I’d be paying as a senior citizen, due to having caused him a lifetime of trauma and PTSD. “She made me attend these horrible groups …..and left me there by myself……,” he’d lament while lying on the therapist’s couch.

In retrospect, I too was concerned about how I would feel about glimpsing into the possible future of my own son’s life with advanced CMT.  Having a change of heart, an inside, harsh voice scolded me, “You should have left him at home! What were you thinking?” Darn. Why didn’t I think about asking Dr. Spock, the world-renowned pediatrician?  Now it was just too late. Time to bite the bullet.

As my future CMT family made its way through the doors, I blocked out the negativity and threw myself into the meeting –  greeting, talking, explaining, introducing; there was no time to worry about the possibility of Yohan’s PTSD reaction, the therapy bills, the nightmares, the medication prescribed for anxiety, the mounting debt.

The clock struck 2:00 pm and most everyone was there, including the elevator guy, Yohan.  I asked him to take a seat in the circle, along with the other attendees while I ran back upstairs to make sure there were no stragglers, people who’d lost their way and could not find the room.

When I walked back to the room, I overheard someone complaining to one of the attendees, Terry, who has become one of our very good friends over the years, “I hate braces too. They suck. The plastic digs into my leg and makes my calf itchy and red. Does that happen to you, too?”

Rounding the corner, I looked up and was dumbfounded to see Yohan engaged in deep conversation with Terry and a few other of the attendees,  commiserating about living with CMT.  I breathed a sigh of relief – he had found his people.

He made a lot of friends that day, friends who follow his progress and support his CMT journey. These first interactions were instrumental in his acceptance of the disease and his willingness to get involved with the CMT Association, from leading youth groups, speaking at CMTA conferences, spreading awareness, and even fundraising for a cure.

Today, Yohan is in grad school, majoring in psychology. He’s had many ups and downs as his CMT has progressed, but those first relationships served as anchors, grounding and supporting him when times got tough.

Home for vacation just a few weeks ago, we spent time with Jeana and Rylee Sweeney. As I watched him with 12-year-old Rylee, he naturally emulated the love and compassion he experienced with the people who first wholeheartedly embraced him at that first group meeting. It was a beautiful scene to witness.

I’m thankful Yohan attended the branch meetings and found a way to manage life with CMT. He hates the disease, and so do I, but what choice do we have? He knows that everyone with CMT evolves differently, and he is not worried about the distant future. He just tries to get through each day as best he can.

He also believes in “playing it forward” –  he enjoys taking the time and offering love, understanding, and compassion to the  younger generations who are trying to find a way to live well with CMT.

And me? I’m just thankful it all worked out, and I’ll have enough money for retirement. Therapy is expensive!

Yohan was diagnosed with CMT 1A at the age of 7. Neither my husband nor I have CMT, so Yohan’s CMT is the result of a de Novo mutation- the first person with CMT ever in our families. CMT just showed up one day on our doorstep as would a long forgotten relative, needing a place to crash. He crashed alright, and never left, but he’s DNA and we’ve accepted him and make the best of the situation…. most days.

Over the years, I’ve written articles and given presentations about our family’s journey with CMT.  Here’s one from 2006 which is still relevant today:

Embracing Differences

Why does Yohan have funny old man shoes? Why can’t he run fast and climb trees? And what’s up with all the sprained ankles? Why does he get rest breaks and we don’t? He’s probably just lazy. Right?

These are just some of the questions and comments we heard during the early years. Yohan’s classmates realized he had some physical differences, but from the outside, he looked more or less, just fine. Making matters worse, Yohan did not have the words to explain this somewhat complicated neuromuscular disease to other kids his age. We barely understood it ourselves.

After giving it some thought, and getting Yohan’s blessing, I decided to present CMT to the entire class in a very upbeat, interactive, and educational way. My goal was to have the students actually acquire some sense of what it might be like to have CMT. I wanted them to empathize with Yohan, understand him, and accept him—not feel sorry for him.

The day of the presentation arrived and Yohan was nervous. True to form, he had his hoodie on and sort of hid in the back of the classroom so he could pretend he did not know me and had never met me. In all honesty, Yohan liked the idea of this presentation because he was not being treated well by the other kids, but when the day arrived, so did a case of the nerves. How would his peers react? There was no way to know in advance.

At at the beginning, I spent several minutes explaining the meaning and origin of CMT, and then I involved the class in a discussion and some activities. We also talked about the peripheral nervous system and the differences between sensory and motor nerves.

Then I explained that kids with CMT may have problems with tasks requiring fine motor skills. To demonstrate how difficult it can be for someone like Yohan to perform everyday activities, I gave each student a button-down shirt and a pair of socks. I had them put a sock on each hand, and then I asked them to button their shirts up as fast as possible. I heard, “This is hard,” “I can’t do this,” and even, “I give up!” I also picked up on a couple of  “This sucks” and …well, you get the point. The good news is that this exercise led to a wonderfully animated discussion about how frustrating and challenging the simple tasks of writing, tying shoelaces, and buttoning shirts can be for people with CMT.

Next, I brought in a model of a 10-foot-long myelin sheath with nerves branching out at each end. I made this with a black hose, through which I threaded many different-colored wires. I showed how the myelin sheath protects the nerves and, in turn, helps them send impulses to and from the brain. Delicately avoiding negative terms like “damaged” or “abnormal,” I explained that the myelin sheath in people with CMT is “thinner” and thus less apt to protect and conduct as rapidly or as efficiently as the myelin sheath of someone who does not have a neuromuscular disease.

To illustrate how the loss of myelin affects nerves, I chose three volunteers and asked them to first run the length of the sheath four times and then hop the same distance. They all agreed that hopping was much harder and time-consuming. This activity ultimately gave them insight into why muscles in CMT get tired quickly and just how much more energy a person with CMT must expend to perform the same tasks as everyone else.

Finally, I divided the class into groups of four or five students. Each group (except my son’s group) was given a full bottle of glue. His group also received a glue bottle, but, they didn’t know it was filled with water. I declared that the first group to squeeze out all the glue from the bottle would be the winner. On “Go,” they all squeezed furiously, wanting to win the bags of candy I held out as the prize.

Of course, the group with water in their bottle won very quickly. Cries of unfairness and injustice rang loudly throughout the room, especially when I handed out the bags of candy to only five members of a class of 21. When one child blurted out, “Oh… I get it, in this exercise, we are the ones with CMT and even though we tried really hard to complete the task we could not. The non-CMT group won the prize.” The others reflected on what was just said and I saw light bulbs illuminating the entire room!

This exercise produced much empathy and insight, which in turn provided a deeper and more profound understanding of CMT. Finally, I reminded the class that everyone has some condition or obstacle to overcome, whether it’s wearing glasses or braces or hearing aids. I left them with the following thought: if we all tried to be open to the differences of others and learn to understand and accept them without judgment, this would be a much better, more tolerant world!

From that day on, the teasing stopped, and Yohan became just another kid at school. Yeah, he might wear braces on his legs, trip and fall a lot and feel too exhausted to run around, but the questions were answered and the mystery was solved. Education is a wonderful thing.