Last weekend, I planned to meet a friend at 7:45 on Sunday morning. I arrived a little early (growing up, I learned 10 minutes early was considered “on time,” but arriving “on time” meant you were just plain late). My friend pulled up on time (which means she was late – 😊). As her car slid into the empty parking spot, I could see her left hand holding her cell to her left ear, talking, laughing, and talking some more. Five minutes later, she opened the door, walked over to me while still chatting away, covered the speaker part of the phone, and whispered, “Hi!” “Hi,” I whispered back.
I did not tune into her mood or her joy. I felt irritable and impatient; I was stuck in my own reality, and I just wanted to walk, get moving, and get on with the day.
When she was finally ready to walk, yet another woman pulled her truck over to the side of the road to chit-chat with my outgoing friend. “Ugh,” I thought. “More time wasted talking.” My friend has non-stop energy and knows a zillion people, attracting people like bees to honey.
“OMG,” I thought. “We will be here all morning, probably until noon at this rate. I looked at my watch, but it was only 8:25. Why did it seem like I had waited for over an hour? We had plenty of time, but time was not the problem. I was just in a mood. It happens.
The best is yet to come: Impulsively, I made my way over to the truck and blurted out, “Shamika, you remind me of my mom. I love my mom, but whenever we were together, all the homeless people in the downtown area would claw their way to talk to her. She was the kindest soul ever, but we never got to where we were going. I’d end up leaving her with her friends and waiting at a nearby café!” (Wow, where did that come from?)
Joking with the woman in the truck, “And just to be clear, I am not insinuating you remind me of a homeless person….. HAHAHAHA.” I think she got the joke, but honestly, I was acting like a 5-year old child. That comment sort of ended the three-way conversation.
I’ve been working on emotional mastery, with Executive Life Coach Arda Ozdemir, using the POWER method (rise2realize.com) which has been transformational. But that particular day, everything seemed to fly out the window. That day, there was no Pause, Observe, Welcome, Earth, React.
There was only react. Well, back to the drawing board.
Once we were alone, my friend looked at me with disbelief, “What is with you today?” Nothing!! I assured her defensively. “Nothing at all.” And then the memories whooshed back into my consciousness, and the tears started to flow.
This was my Aha moment.
Thinking back to childhood, I remember my mom being uber busy, working long hours, talking on the phone and involved in a million trillion activities. Everything she did was to make a better life for her children.
My mom had to work full-time, as did my dad. With 3 children, a bunch of half brothers and sisters, cousins, aunts, uncles, and grandparents all living in close proximity, neither parent had time to spare. But a 5-year-old doesn’t care about all that. A 5-year-old wants what she wants and, in its absence, creates coping mechanisms to make sense of the world.
When I heard my friend on the phone, taking her time, chatting with others, I went right back to my early memories and lashed out with repressed childhood feelings of loneliness and not feeling seen.
I had dreamed of having a mom who made me lunch, brought me to piano lessons, and waited anxiously as I walked in the door after school. A child understands neither the financial responsibility required to raise a family nor the expectations and responsibilities of adulting.
A year ago, I would not have had the aptitude to look for meaning behind my behavior. I went along, day to day, believing I was born emotionless, one-dimensional, superficial, and lacking in depth. I was not in touch with my authentic self (I did not even know I had an authentic self). I’m only getting to know her now. It’s a delightful process, like a treasure hunt.
Working with Rise 2 Realize Life Coach, Arda Ozdemir, I’ve learned to pause and observe those emotional reactions – ideally – before they happen, connecting with and processing those repressed fears/feelings before responding. I’ve grown so much, but Arda reminds me that this is only the beginning, meaning this work is a marathon, not a race, and I’m okay with that.
Now, back to my friend. I shared my reflections, and she was open to hearing my truth. I apologized for being impatient and explained why I acted so rudely. To her credit, she reflected upon her own life and raised her tendency toward phone conversations with friends/work while her family was around.
To my surprise, she too experienced an AHA moment. She wondered, “Do her friends/family resent her talking on the phone when spending time together?” It was the first time she’d considered how her actions affected her loved ones. At the end of our walk, she planned to check in with them to get their feedback. My shared moment of clarity got her thinking about her own life and habits. How beautiful is that?
Try it. It’s not easy to focus the mind, but with practice, you get better. And, the silver lining? It only takes 2-3 minutes. So, take a moment to pause and figure out why you are acting/reacting the way you do. A little bit of self-knowledge goes a very long way.
In addition to providing services to adults with CMT, the CMTA provides services to children and teens who are also aware of the struggles that they face every day. Jonah Berger and his team have helped the CMTA transform youth into leaders and fulfill their dreams at Camp Footprint for nearly twenty years. His book The Strangest Of Places was published in 2021, and it is a collection of stories that will leave you laughing, crying, and inspired.
As part of episode 18 of the CMTA’s official podcast, CMT 4 Me, Chris and Liz O. discuss Jonah Berger’s experience with CMT and his role with the CMTA, as well as who Jonah is and what he is passionate about.
Jonah: My role at the CMTA, my official title is the National Youth Programs Manager. So, to boil that down into human talk, I run the youth program and I am responsible for working side by side with the team and with the leadership of the youth to come up with programming and offerings for the youth, connecting the youth throughout the year, and then the big shiny diamond at the top of the mountain Camp Footprint every year.
Chris: Jonah, how did you stumble upon the CMTA? Did you hear about us in a support group?
Jonah: I remember the very day I went to a Patient/Family Conference in Washington, D.C. My mom had signed us up to go and I went with her and I met Jeana Sweeney that very day. That was my first kind of true introduction to someone official with the CMTA. I met Jeana when I first arrived at 9:00 AM. She was the first one I met. By the end of the day, I had also met Elizabeth, who also blew my mind. There are probably thousands of people out there who could easily agree with me. Jeana’s enthusiasm and passion for the mission was infectious. By the end of that day, I had met many people through the organization that just impressed me with their grounded nature in what they were up to, and the fact that they weren’t afraid to have fun and laugh while they were doing it. I caught that day one, and I would say that from then on it was just trying to volunteer or help in any way that I could, and the rest kind of took over organically.
Chris: What type of CMT do you have and some indications of your existing symptoms, and whether those have progressed over the years or where you were 10 years ago? Tell us a little bit about that history?
Jonah: I have CMT 1X, as does my mother, as did my grandmother, as do two of my aunts, and three total out of nine cousins on that side of the family. I have two kids now. I have a three-year-old daughter who does have it. I have a three-month-old son who does not. We know this because with CMT 1X for men, such as myself, every daughter I have, I’ll have given my X chromosome, therefore she will have it. Every son I have, I’ll have given my Y and he will not have it. So we didn’t know what we were having both times, but when they showed themselves to us, we knew right away if they would or would not have CMT.
I would say that my overall effect is pretty balanced. I’m quite an active person. I bike a ton. I’ve done a lot of hiking and crazy things physically in my day. I would say that I have been noticing in the last few years, especially in the last year to two years, that I’m having more trouble with balance than I did before. And as Dr. Shy explains it to me, that is not necessarily at my age.It is the progression of CMT as much as it is CMT working with an ever-aging body. So at the same level, you kind of plateau at a certain point in my case, but as I get older, that same level will appear to be more severe because I’m getting older.
Elizabeth: I was reading your book,The Strangest of Places. Is that the whole title?
Jonah: The Strangest Of Places, which is a Grateful Dead quote.
“Once in a while, you get shown the light in the strangest of places if you look at it right” -The Grateful Dead
Elizabeth: I’m just reading that and devouring it. I’ve learned a couple of things about Jonah, Chris. He was traumatized at a young age by a very mean teacher who brought vegetables in every morning and cut them up, so he never eats healthy. I mean, never even celery. It’s fun reading his stories and he loves nature and he’s out camping. But Jonah, you never mentioned CMT in this book. I’m halfway through. All I know is your father’s chasing after you. You jump in your room, lock the door, and he’s grabbing your foot. I mean, there’s no mention of hobbling over. So I was wondering when you were younger, did you have any symptoms? When did they start?
Jonah: When I was that age, no, I was pretty quick, or else he would’ve caught me. No question about it. You did not raise your voice to my mother when you were in our house, which is a good rule now in retrospect, but my biggest concern being the pickiest eater on the planet was what was gonna be for dinner every night. I would call out to my mom, “Mom! What’s for dinner tonight?” She had her canned answer. You’ll find out when you get to the table. Which is for me, you’ll find out in an hour if you’ll eat or not.
I wasn’t having that. So one night, I had it. I don’t know how old I was. I was probably eight or nine. I said,”Mom, what’s for dinner?” She said,”You’ll find out when you get to the table.” Don’t ask me what came over me. But out of my nine-year-old mouth, I said, “Mom, what the F is for dinner?” And all I heard was my father coming up the steps… My father’s giant feet. I ran and I managed to make it to my room and close the door and push my bed against the door. That’s before my dad got to me.
I didn’t really start showing symptoms per se until I was closer to 13. I would say that’s when I really could tell that my feet were getting a little weaker, that I was having a little bit of trouble doing things that should be completely normal for a 13-year-old. And then, by the time I was 15, you can tell in pictures of the way I walked in videos that I was stumbling more for sure.
Chris: Jonah, were you engaged in sports when you were in school?
Jonah: I was. I played soccer for a few seasons as a kid. I was the manager of the girls’ volleyball team in high school. They were seven times state champs and they were tall and lovely. So it was a great situation for me. I had found a way to become part of a sports team without having any athletic ability.
Elizabeth: It sounds like you were never really shy. You mentioned a lot of crushes in your book and like the sun rose and set in her eyes, you know, like things like that. It doesn’t sound like you were a shy kid, even though you were traumatized about going to school when you were younger.
Jonah: I was not a shy kid by nature. I was a very outgoing spirit by nature. I think what happened in kindergarten (which we laugh about a lot) was a teacher who just lost her cool on me as a kindergarten kid and it did traumatize me for several years. I became shy as a result of that, but I think through a lot of love for my parents and through summer camp. Quite honestly, that’s what brought me back out of my shell and kind of into my natural way.
Chris: Jonah, if you don’t mind, what happened? What was that experience in brief?
Jonah: Mrs. Preston, who we call the Pickle Witch in my family. There is a chapter, by the way, about CMT. You’ll get to it in the second half of the book. I had the best kindergarten teacher in history. Ms. Gillespie. She was so great that they promoted her in the middle of the year to a high-level position in the county. First mistake. You never take a teacher out of the classroom at that age unless you have to. They replaced Ms. Gillespie with Mrs. Preston, who decided she was going to earn the favor of these kindergarten-age kids by instituting a vegetable tasting day every Wednesday.
I was already a picky eater. So she would bring in a vegetable, cut it up, and we’d all have to come up, take a bite, and say what we thought of it. I was having nothing to do with vegetable tasting day, and it all came to a head on pickle day. She brought in a pickle. Cut it up, we came up to try it. She said, “Jonah, will you come up and try it?”
I said, “No, no way.” She said, “Jonah, come up and try it.” I said, “No.” And then, evidently, I don’t remember her screaming, but the room mother told my mom, she just lost her cool and started screaming at me. I went under a table and grabbed the table legs. Mrs. Sullivan, the room mom, went to the office, called my mom, and said, “You better get down here.” They peeled me off my mom kicking and screaming every day for the rest of kindergarten, first, second, and part of third grade.
Chris: Wow. So that went on for quite a while.
Jonah: It was a very traumatic pickle incident.
Elizabeth: How did these experiences of early life help you? Because you’ve always been interested in helping kids with differences with different abilities. Did that have anything to do with the future of helping kids be themselves or find themselves?
Jonah: I would say CMT was major. My dad is like the king of all times with a teacher, camp director, and childcare. He was just the maestro. I think I was always kind of inclined towards working with kids, but my disability helped me to steer that passion into working with kids with disabilities. I think what happened to me as a kindergartner made me extra attentive to the kids who are on the fringes. So on the first day of camp, I am always laser-focused on where the homesick kids are. Let me give them extra love because I know exactly what’s going on in their gut at the time.
Chris: I want our listeners to learn more about Camp Footprint and what you have done, and it’s just such an incredible event. So why don’t you tell our listeners a little bit about Camp Footprint and what that’s all about in your role and your attitude towards it and what you get out of it, et cetera.
Jonah: Well, in 2016, the organization decided it was time to get a camp together just for kids with CMT because the avenue had always been a Muscular Dystrophy Association camp, which is a beautiful avenue. I’m a huge fan of the MDA’s Camp Program. But MDA is an umbrella term that encapsulates 50 different disabilities and diagnoses. I think that CMT, being as prevalent as it is and specific as it is with its symptomatology, needed its own program and they happened to have someone on their advisory board, myself at the time, who was a camp director. His whole career with CMT and was used to working with kids with CMT, so thank goodness it was a no-brainer because it is the greatest joy I’ve ever experienced professionally in my entire life. I’ve been directing eight different camp programs now, including Footprint. And I’ve never seen anything like it.
I’m biased because I help to plan and run it, but there’s something bigger than any one of us that goes on when we get kids together who are used to being the one in their friends’ group, some of them, the only one in their family to have a physical disability, the one that is looked at as abnormal and all of a sudden you put them into a situation where a hundred other kids or 99 other kids and three-quarters of the staff and the director has CMT and not only are they understood, but they are understood about one of their most personal challenges without them having to say one word and they know it. And as a result, everyone relaxes. And I don’t put a lot of value on normalcy, as you can probably tell. They are allowed and gifted the ability to feel normal, some of them for the first time in most of their lives. And it is so cool to watch what happens to a kid when they’re not trying so hard to cover something up, when they can just relax. And that’s the bottom line behind the success of Footprint.
Elizabeth: Bring us through a day in the life.
Jonah: This was the first year of Footprint 2016. On the first full day when the kids were there, the first morning I got up, I grabbed my braces with my right hand, and my shoes with my left hand, and I came out and I sat down on the couch in the common area of the boys’ cabin, and I started doing my morning routine of five minutes of getting my legs strapped on. At one point, I turn my head to the right and two little boys are sitting next to me on the couch putting their leg braces on. And it was the first time in my 43-year-old life at the time that I had company, and I had company that got it, and it was really a pretty incredible moment. We have breakfast, we do chair dancing every morning after breakfast, which is our way of exercising without having to have balance be a part of it.
So everyone sits in chairs. Bridget, our unbelievable Director of Greatness, is leading it. She’s a dance instructor and so many other things, but brought chair dancing to the kids and it is one of everyone’s favorite parts of the day. We just rock out and get our hearts pumping and no one has to worry about tripping or falling. I love it. After dancing, we go to activities in the morning. We have activities in the morning and afternoon. They are traditional camp activities. We do boating and swimming archery! Wall climbing, zip-lining, and fishing. It’s just so fun. And it’s a camp that is designed for disabilities. So everything is adaptive. Their attitude and our attitude is, if you want to do it, we will figure it out. We will find a way to get you to do anything under the sun.
Chris: I think that’s so cool. All the activities you offer and I can only imagine, you must have some of the attendees very hesitant to try some of these new things, right? They’ve never done them and maybe in their mind they’re thinking, I don’t think I can do this. So it’s gotta be such a cool feeling to see them participate.
Jonah: When we are there we ask, “What do you want to do?” We’re never saying, “you can’t, you shouldn’t, you need to do this activity instead of that activity.” We’re saying, “What do you want to do?” If a kid wants to get up to the top of the climbing wall, we’re gonna get that kid to the top of the climbing wall. If it takes three people climbing around them and helping them, they’re gonna get up there. I think that’s different from what they experience in typical days of their lives.
We do lunch. We have rest time after lunch where no one rests, but we all hang out and talk. I think honestly, my favorite activity at Camp Footprint is sitting around and talking to the kids, and the other counselors. It’s as important a part of our day as any other part of our day because the whole goal here is connection. Tapping into the understanding, you get from these other people. So we don’t want you just running around the whole time doing activities. We want you balanced between running around doing activities and sitting there and just talking or listening as other people say. Things that sound like they’ve come directly from your own experience.
We swim in the afternoon, which is so much fun. Then we do dinner, and then we do an evening activity every night. The evening activities are always a blast. We have a dance, we have a talent show. Usually, at one point or another, we do a campfire the first night of camp where I do a drumming circle with everyone and we sing and it’s just wonderful.
It’s funny as a camp director and as someone who’s done triathlons and climbed mountains and done all these big things, I tend to get an inflated sense of ego from time to time. My wife will tell you. But then you hang out with these kids who are facing some unbelievable challenges in the most graceful of ways, and I’m reminded of humility every year at camp, I am reminded of the absolute vital value and importance.
Connection to others, not just of your own tribe, but of each other. I think the biggest gift that CMT gives us and that Camp Footprint gives the kids is the reminder that we need each other. We can’t really function, especially happily unless we’re together. We were designed to be in a community, and that’s why camp is my favorite place in the world and that is why almost every kid and counselor who comes to Camp Footprint goes home thinking the same exact thing. It’s a yearly reminder for me to keep on going even though I appear to be pretty confident with my disability.
My disability causes me a lot of internal struggle and I am aware that people are looking at me all the time and I am self-conscious as a result of my disability. Whether I show it on the outside or not, I am. Camp is a reminder that you’re great the way you are.
Elizabeth: There are times I have an internal struggle. Do you bring your struggles to camp and talk about it?
Jonah: Yeah, I am completely honest with the kids and counselors.
Anyone at Camp Footprint will tell you. They know me inside and out. There’s no holding back. At that point, the kids, for the most part, are so mature. They just get it because they deal with struggles. They don’t have the luxury of ignorance. They have to be engaged. And as a result, we get some pretty amazing kids.
Jeana, for example, while she’s amazing, is an example of adults being children locked in adult bodies. So not all adults are mature. That’s why Jeana and I get along so well, but everyone’s on the same level. At Camp Footprint,there’s no separation between admin and counselors and campers. CMT cuts through all of it and we all function on the exact same plane, and I think, as a result, it’s just easier to develop a connection that way.
Chris: Jonah, do you have an experience at Camp Footprint that you can remember where you feel like you really influenced one of the campers, or maybe they were struggling with something?
Jonah: There are two that come to mind. There’s a chapter in my book, Elizabeth, it’s called The Golden Pine Cone, which is kind of my wife and I’s love story basically. Let’s just say it has to do with the Golden Pine Cone, but one year earlier, at camp, we got back from Lake Day, we got back and there’s some downtime where we’re all sitting on blankets on the field and I happened to sit down with a group of about 10 kids. I don’t know why, but somehow the Golden Pinecone story came up. So I told the whole story and now it’s a tradition. Every year on Wednesday afternoon, I find a new group of kids.
I sat down and told them the Golden Pine Cone story.
So far it’s been going over well. That’s an example of sharing my 50-year-old wisdom with these kids any chance I get in any creative way that I can model for them. That no matter what your circumstances, you don’t stop. You keep on going.
The one story that sticks out in my mind is there was a camper who was pretty shy and didn’t want to be in front of others but made it clear that she loved to sing. But she was terrified of singing in front of other people. That year, on Wednesday night at the Night Swim, I think it actually was Jeana who encouraged this kid to come to the edge of the pool and got everyone to be quiet. I was in the pool at the time playing ball with the kids and everyone was quiet. Everyone came over to that side of the pool and this kid sang her song. Wow. An entire song for the camp, and her voice was shaking like nothing you’ve ever heard. She was scared to death, but she was doing it. And the applause that erupted when she was done with her song was the most magical thing I’ve ever seen. I’ll never forget it. Hannah Roberts and I looked at each other and we had tears in our eyes. Unbelievable moment because that’s it, it’s an illustration of what Footprint’s all about. It’s like whatever it is, that’s your mountain to climb. If you climb it during camp, you’re gonna have a lot of people cheering you on. That was kind of a shiny example of that. And you could see this kid just growing. Infinitely in that one moment, and I see that about a hundred times a day. It’s pretty cool.
Elizabeth: I can’t thank you enough for doing what you do. I was skeptical at first of camp when the idea came up, and I told you that many times and throughout the years the feedback has been phenomenal.
So tell me, we have Camp Footprint, but we have other youth programs, so I get confused about Youth Council and Compass and what are we doing at the CMT with all these programs.
Jonah: So my kind of focus in the first few years was to establish infrastructure within the youth program. That was the first big step to that was the youth council. The youth council and a lot of the ideas for the youth program came from one of the youth council members who is about to age out of it in three weeks. But Erin Black came to me one day and she said,”The youth at the CMTA don’t have enough of a voice. We don’t have a seat at the table.” And I said that’s something that ought to be fixed and is fixable. Because I knew that the adults at the CMTA were heart filled. Like you just have to push and so we did.
The youth councils are a group of kids who show themselves to be organized, passionate, and dynamic. Natural leaders.We gather them, we use them as a kind of a youth board of directors to bounce ideas off of. We develop fundraisers, develop programming. A lot of my ideas throughout the year, I’ll bounce off of them because they are the ones representing the very kids who are going to be benefiting hopefully from those ideas. I get a lot of my ideas from the youth council and then I go run with them as things I institute into the youth program. So it’s an invaluable group of kids. We meet once a month. They’re on committees. They have a fundraising committee, a special projects committee, and a social media committee. They do unbelievable work and it’s all voluntary. Navigating the world of CMT or life with CMT with other young adults.
Elizabeth: I just wanted you to say a word or two about Compass. What are the age groups for that?
Jonah: Compass is our newest program for 19 to 29 or 30 years old. The youth program is primarily for 10 to 18-year-olds. I believe the CMTA should be supporting someone from birth to death and everything in between. We do a ton of that already, but there are some holes in our system just because it hasn’t been done yet. So we’re filling those in.
I have a lot of ideas. They have to be futuristic but for the whole infant, toddler, and young kids. phases. We connect parents as an organization, but there’s just even more that I would love to develop around that. Once a kid is 10, they can come to Camp Footprint. They’re involved in programming for the youth program. When they turn eighteen or nineteen, that’s when they start evolving into being young adults and applying for colleges and needing to keep accommodations in mind and dating and sexuality and all of these things. We decided that was the next step in the process. So we created Compass.
It is a monthly meeting online to start with that covers a different topic each month. They’ve done a month on symptoms and what you use to help you. They’ve got a list of unbelievable topics, including accommodations at college, dating, and sexuality. Who better to talk to than other young adults in your position? And young adults especially are a group that was overlooked because I think the branch system that we have developed over many years, tends to run in older adults. So younger adults don’t often flock to that model. It’s not their jam. We wanted to create a jam that was just for them. My huge belief is that I can help to plan it, but I don’t run it. I’ve got Julia Beron who was on your show. Katerina Ballsmith and they are two young adults with CMT who are running this program with my support and help. I want young adults to show up and be served by young adults. The youth movement’s slogan is Youth Empowering Youth. Not a 50-year-old empowering youth. It’s empowering youth.
Chris: So, Jonah, if someone in our audience with CMT, a youth, et cetera, how would they go about learning more about these opportunities to participate in these programs? Would they reach out to you directly? Do they go to the website? What’s the information you can share with the community?
Jonah: They can do one or the other. So my information, I’m hoping you’ll spread it far and wide, is Jonah@cmtausa.org. People can contact me any time of day. The best way to get all the information under the sun in one place is our website, which is CMTAUSA.ORG
Chris: What would you like to leave our listeners with or what advice would you love to give our listeners as we close?
Jonah: I’ve got a small one and a big one. The small one is, and again, it’s biased because I work for the CMTA and I’m paid by the CMTA, but I also see frontline what the CMTA does and accomplishes, and I’ve never been a part of an organization that does it better. I just never have. And so, the small one you can do is keep supporting and that could be financial. It can also be participating in things. It can also be a connection or volunteering, as there are so many ways to support this organization.I’m here to tell you all from the front lines. This organization is worth every minute of your energy and effort and every penny you donate. It’s beautiful because not every organization I’ve worked for I could say that about, but I can about the CMTA.
I guess the bigger one I would say comes directly from my exposure to the youth of the CMTA and my work. Don’t ever believe that the world is a bad place. Yes, the world is going through a lot of issues and we have a world of work to do in our culture and on the way we prioritize and treat each other. But the same thing from the front lines. If you are lucky enough to do the work that I do, you see this side of humanity, this beauty, this strength, man, that same thing as I said about parenting and marriage. We have a lot of challenges on our plate as a community, as a larger world community, but it’s worth the effort. You gotta keep doing the work because the golden moments are still very much alive and there’s nothing but hope in the future as long as you’re willing to stay focused.
Katerina is a bright young college student living with Charcot-Marie-Tooth disease. Officially diagnosed at 17 years old, her symptoms progressed rapidly, leaving her little time to adapt to a physical disability, unrelenting fatigue, chronic pain, leg braces, and a wheelchair/scooter.
Although her CMT symptoms pose many limitations, she’s a fighter and continues to go to college, dance, and play a big part in the CMTA’s new young adult community – Compass. She also is a talented writer, aiming to encourage and inspire others who live with chronic illness, pain, and fatigue.
Listen to her podcast, subscribe to her blog. She’s a gift to our community! xoxo
“He has what?” I asked when the neurologist mentioned something about sharks and a
tooth. Dr. Sum, the pediatric neurologist was using words like nerves, genes, muscle
atrophy, and progression. I wasn’t able to quite grasp what he was trying to convey, but it
did not sound good. Something was amiss with my 7-year-old son, Yohan, and now this
ailment had a name – CMT or Charcot-Marie-Tooth disease. When he told us this disease
was incurable and progressive, I completely lost it.
Before he left the room, he gave me a card, “Here is the website for the Charcot-Marie-
Tooth Association (CMTA). Call them for a packet of information. In the meantime,
continue with physical therapy, and occupational therapy. I’ll see Yohan in a year unless
something else crops up.” And that was that!
Neither my husband nor I tested positive for CMT, so why is it that my only child had a
heritable genetic mutation causing a life-changing neuromuscular disease? What did I do
wrong? How will we deal with this as individuals and as a family? What does the future
I would ask myself these and many other questions over and over again, trying to
understand, striving to make sense of why an innocent child, my only child, had to endure
such challenges so early on in life. Initially, I experienced grief in all its stages—denial,
anger, bargaining, depression, and acceptance—and just when I think acceptance
remained strong in my heart, I had setbacks, reverting to anger and sliding down the
ladder once more.
A World Shattered in a Million Pieces
My world shattered into millions of pieces that day, and I never thought we’d be able to
pick up all the scattered bits to rebuild our dreams, our hopes, and our wishes for Yohan.
I quickly learned this reassessment would not be a one-time project, but a repetitive task
taking time, effort, and a lot of soul searching.
Seeing a child struggling with pain, braces, physical limitations, and obvious differences
made me unspeakably sad. My maternal instincts told me to protect, shelter, cajole and
especially do something—anything—to make the world a friendlier, more secure place
for him. The more his self-esteem plummeted and self-confidence lessened, the more I
would try to make his life easier in any way possible.
Yet, kids are resilient and smart. On some level, Yohan felt my fears and reflected them
back by becoming more and more anxious, less focused, and simply put, a very unhappy
child. Something had to give.
What Else Could We Do?
Lightening his load did not seem to be the answer, and neither did catering to his every
need. In retrospect, I was allowing him to be more dependent on me for everything, and
his teachers in school commented on his lack of autonomy and self-motivation.
My husband and I thought long and hard about what was playing out before our eyes and
decided to get some help from a therapist who counsels families on raising children with
medical issues. Intuitively, we knew what measures needed to be taken, but implementing change is hard
and we desperately needed someone to guide us. Slowly but surely, we stopped treating him as different
and let him experience the world on his terms. For me, this was probably the hardest, but most essential
job I had as a parent of a child with special needs.
Tools for Independence
Working together, my husband and I learned how to provide Yohan with the tools needed
to be independent, self-sufficient, tenacious, and optimistic. After numerous
discussions and a lot of trial and error, we got on the same page and worked as a family
towards common goals. My husband started bringing Yohan on camping trips, desert
excursions, and kayaking adventures, treating him like every other kid on the trip.
I changed my mindset, letting him blow off steam on the way home from school, and
listened without judging by creating a safe space for him to open up and talk. Sure, I still
tended to stray at times, fretting over hypothetical possibilities, living much too far in the
future, and being obsessed with “what ifs”—but a shift was taking hold, and overall, life
became more manageable and much more fun.
When all is said and done, Yohan was not the top athlete in his class, so we had the
opportunity to do things a little differently, creating a life full of enriching and rewarding
experiences. Over the years, our motto has been, “Let’s Make it Happen.” We follow our
dreams, live in the moment, cultivate new experiences and live our best lives possible.
Yohan became an expert archer, was scuba-dive certified, visited the Galapagos Islands,
volunteered many hours to CMTA, and graduated from a first-class University and
Graduate school. He is now working in the field of HR for a local start-up company and
enjoying his success.
Encouragement For Parents
If your child/children have CMT, life can still be enjoyable and fulfilling. There is no one
road map to raising a child with CMT, but here are a couple of key concepts I often share:
-Accept (eventually) the CMT diagnosis – it’s the first step.
Talk about CMT with family and friends; don’t hide it.
Help your children describe what CMT is, in their own words, if asked.
Let your children know it will all be okay because it will.
Embrace challenges and praise your children for doing their best.
Create a safe space for your children to talk about frustrations and anger.
Let go and let them live their lives to the fullest, with autonomy and independence.
Laugh heartily and often. Laughter really is the best medicine.
Involve yourself with the CMTA. We have so many resources for parents and kids alike.
Camp Footprint, the CMTA’s sleep-away summer camp for kids with CMT changes lives. Our volunteers make us shine. Get involved and meet forever friends who understand. Neither your children nor you should deal with this alone. We are better together.
I could not be prouder of Yohan. He’s kind, empathic, funny, and engaging. He rarely complains about his CMT, and lives with the knowledge that every day is a blessing, He has a supportive extended family and friends who love him for his authentic self. If there is just one gift with which I wish to leave him, it is the knowledge that he can achieve his heart’s desire. He just has to believe!
– Elizabeth Ouellette
I’ve been volunteering for CMTA for the past 20 years. Here are a few of my most cherished achievements: I created a school-based program, Teaching Kids About CMT, built the national CMTA Branch network, initiated CMT Awareness week, co-founded the Cycle 4 CMT and co-launched the CMTA’s official podcast CMT 4 Me Podcast with my brother, Chris, who is also on the CMTA Board of Directors.
Eleven years ago, late CMTUS founder, Gretchen Glick and I talked about starting the first ever CMT Awareness Week. The 2 organizations (CMTA and CMTUS) worked collaboratively to get the word out about CMT. At the CMTA, I had posters created, wrote email blasts, and asked our branch leaders to spread awareness through groups across the country.
This first CMT awareness week was so successful, that the following year, we dedicated an entire month to CMT awareness, and somehow, Gretchen got American radio host, Shadoe Stevens, to do a PSA about CMT. Listen to this 29-second clip from 2012:
Eleven years later, it is still hard to explain CMT. I read Kenny Raymond’s latest blog post where he addressed this issue, and he brilliantly defines some of the challenges of explaining what CMT is. Thanks, Kenny B. Raymond for putting your thoughts on paper for reflection. How do you explain CMT? Before you answer, read Kenny’s article and then, come up with your elevator speech and share it in the comments. I’d love to hear your ideas!
We All Know the Drill
Exploring the Burgeoning Question: “What is CMT?”
by Kenneth Raymond
“Why are you wearing shin guards? You play soccer?”
“What’s wrong with your hands?”
“What’s wrong with your legs?”
Etc., Etc., Etc.
We all know the drill. The answer to the seemingly never-ending questions involves those three lovely letters, C-M-T. And then, the proverbial follow-up, whether it’s a random person in public or even a healthcare provider, requires us to dig deep in hopes of giving them a straight-to-the-point answer that’ll leave them knowing just enough about our disease to remember the name should they hear it again, all the while hoping we give them enough information to know it’s not a tooth disease and that it has nothing to do with sharks.
What is CMT?
“What is CMT?” I’m always trying to improve on how I answer this question. I can easily rattle off some quick factoids, such as CMT is a heterogeneous group of inheritable peripheral polyneuropathies whose name comes from the three doctors who first described it in 1886: Drs. Charcot, Marie, and Tooth; and this name, CMT, has since become an umbrella term that refers to many different inheritable sensory and/or motor neuropathies. Quick and to the point, right? This doesn’t say much about what the disease is though.
Medically, CMT is a genetically caused neuromuscular disease—neuro because peripheral nerve, muscular because the disease in the peripheral nerves causes symptoms in muscles. Genetically caused because each subtype is caused by a mutation in any one of many different genes.
Medically, CMT is an inheritable multisystem neuromuscular peripheral polyneuropathy. Inheritable because each of the genetic mutations that cause CMT are inheritable. Peripheral because CMT is a disease of the peripheral nerves. Polyneuropathy because CMT affects more than one peripheral nerve at a time (poly), as opposed to only one peripheral nerve (mononeuropathy). Neuropathy because peripheral nerve disease. Then, multisystem because CMT can affect hearing, vision, breathing, genitourinary, and much more, in addition to feet/legs/hands.
Statistically, CMT is the most commonly inherited neuromuscular disease nobody has ever heard of. This one is a weird dichotomy unto itself. CMT is a rare disease by every statistical and modeling measure. At the same time, when it comes to inheritable neuromuscular diseases, in totality, CMT is the most commonly inherited. In this context, common and rare can peacefully coexist even if it seems like they shouldn’t.
These above are just a select few examples of how CMT can be described. All of these descriptions are fine and dandy, but not only are these difficult to remember, firing off any of them to Jane Q. Public tends to render confusion about a disease they’ve never heard of. Is there a viable solution—a grand unifying answer, so to speak?
The Elevator Speech
I’m often asked to give my “45-second elevator speech” on what CMT is. My response typically hits several talking points and is usually along the lines of “CMT stands for Charcot-Marie-Tooth disease and is a rare inheritable neuromuscular peripheral neuropathy named after the three doctors who first described it more than 130 years ago. Although rare by definition, affecting only 1 in every 2,500 people, and totaling about 3 million people worldwide, CMT is the most commonly inherited peripheral nervous system disease. CMT causes the peripheral nerves to stop working correctly; and this leads to muscle weakness and atrophy, joint changes, difficulty with walking, and hand issues. Some who have CMT have breathing issues, hearing impairment, vision problems, bladder issues, and GI issues. The disease progressively worsens over one’s lifetime, there is currently no treatment, the disease can’t be cured, and it affects everybody very differently from one another.” Sometimes, people will ask follow-up questions. Other times, we part ways with only a, “whoa,” and maybe they’ll recognize the name the next time they hear it.
My “elevator speech” has been a go-to for many years, having evolved only slightly since my initial CMT diagnosis. It’s very easy for me to throw it out there anytime I’m asked. Does it say enough about what CMT is as a whole that it could be adopted by anybody who needs a quick go-to description? Until a week ago, I thought it did and I thought it could. What changed?
Bicyclists as a Catalyst
For the first time, I attended the Charcot-Marie-Tooth Association’s Cycle 4 CMT fundraising event held annually the last weekend of August in Charlotte, Vermont. This event is huge and people from all over the place, not just locals, attend and/or participate. I met and spoke with many CMTers. Some CMTers were cycling participants riding a treacherous 40-mile course through the western Vermont mountains even though there were shorter less-challenging routes. Some CMTers were there to participate in non-cycling activities. Some were event volunteers. Some were parents who do not have CMT, but their child does (or children do). Some were members of the CMTA leadership and social media teams.
Some of the CMTers at Cycle 4 CMT used wheelchairs, canes, walkers, etc. Some CMTers wore leg braces. Some CMTers had breathing issues. Some CMTers had severely twisted and deformed feet. Some CMTers had hearing loss. Some CMTers had speech impairment. Some CMTers had <fill in the blank>. I’m confident there were many hidden symptoms that went unmentioned and unnoticed. Without a doubt, it was the most diverse single-source representation of what CMT is that I have experienced in-person. As I spoke with CMTers and as I looked around, it became apparent that my go-to elevator speech is grossly inadequate and under-represents what CMT is.
It’s well established that CMT can and does affect everybody differently, and even within the same family. CMT can cause many things. Not everybody who has CMT will experience all symptoms of CMT. The mix of symptoms, the severity of individual symptoms, the rate of disease progression, and the overall disease severity can be quite different for every CMTer. What one CMTer experiences cannot be used to gauge or to predict what the disease will be for the next CMTer, regardless of subtype. It’s one thing for me to read it, and another for me to witness these concepts firsthand.
Is There a Solution for the Question?
What is CMT? The answer to that question, as it turns out, is quite different for every CMTer. My CMT is different than somebody else’s CMT. CMT, for me, looks quite different than does CMT for another. CMT, for me, is twisted, contorted, crooked feet that have led to tendons tearing requiring corrective reconstruction surgery of my right foot (and upcoming surgery for my left foot). CMT, for me, is weakened hands that easily cramp, a knee that used to dislocate before corrective surgery, bilateral hearing loss, unrelenting fatigue, chronic whole-body pain, progressively weakening upper leg muscles, spine changes (kyphoscoliosis), premature degenerative joint changes, speech/vocal difficulties, and for me, CMT is breathing issues. For another CMTer, CMT is wheelchair dependency, is an inability to hold and use a pen or pencil, is 24/7 mechanical ventilation via tracheostomy, and is total deafness. Yet, for another, CMT is none of these things, or a is a combination of these.
What is CMT? True to CMT, there isn’t a one-size-fits-all answer. The answer to the proverbial question is unique to the CMTer who is asked. The answer is even unique to the healthcare provider and to the scientific investigator. There are wrong answers to the question, such as a suggestion that CMT is an autoimmune disease. While CMT might share symptoms with some autoimmune diseases, such as Multiple Sclerosis (MS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) for example, CMT is decidedly not an autoimmune disease. Nonetheless, the answer to the burgeoning question is dependent on what CMT looks like for the one who’s giving the answer.
If you were to line up ten random CMTers—somebody who has CMT or somebody whose loved one has CMT, and ask each, “what is CMT?” each of the ten answers are likely going to be very different from one another. The differences are not born of inaccuracy or of a misunderstanding of their disease. The differences instead come from how differently CMT looks for each individual and from how each person individually experiences CMT.
What is CMT? For me, CMT is a cruel and often debilitating neuromuscular disease that looks very different from person-to-person. For me, what was once an easy answer to a complex question, or what was a complex answer to an easy question, has become exponentially more difficult to answer. As a CMTer, it’s easy to answer the question by simply describing what CMT looks like for me. As an advocate, however, I’ve learned my “45-second elevator speech,” while it gives a lot of information, is a disservice to the CMT community as a whole. The solution? I resolve to do better. I have to do better. I will do better.
About the Author
Kenneth Raymond was first diagnosed clinically with CMT1 in late 2002, at the age of 29. He was genetically confirmed to have CMT1A a year later. Kenneth has since devoted his life to studying, researching, and learning all things CMT, with an emphasis on the genetics of CMT as they relate to everyday CMTers. As a member of the Charcot-Marie-Tooth Association’s Advisory Board, Kenneth serves as a CMT genetics expert, a CMT-related respiratory impairment expert, and as a CMT advocate who is committed to raising CMT awareness through fact-based information rooted in the latest understandings of CMT. Kenneth has just published,
Charcot-Marie-Tooth Disease Gene and Subtype Discovery: The Complete Bibliography – Fall 2022 Release: A Desk Reference for the Everyday CMTer, the Practicing Clinician, and the CMT Researcher Paperback which is available on Amazon. Kenny also has an excellent website and blog to check out: expertsincmt.com
Kenneth Raymond is an administrator of several Facebook groups. He helps people with their CMT questions, especially those related to breathing and genetics. The CMTA is fortunate to have such a well-versed, well-educated Advisory Board member willing to work tirelessly for the CMTA community!
Comin’ at you! What do you get when you mix chaotic creativity with organized comedy? You get the #1 CMT Podcast available today: CMT 4 Me. Despite being polar opposites, this brother-sister team brings it all together in an exciting and informative series focused on all aspects of CMT. Meet Chris and LizO (Chris and Elizabeth Ouellette), dedicated siblings on a mission to magnify the voices of individuals with CMT, share their challenges and success stories, and raise awareness of Charcot-Marie-Tooth disease.
As kids, they learned homelessness was not someone else’s problem.
Giving back is so much more than pizza and donuts for Halloween.
Chris: One, two, three. Hello, everyone. This is Chris and Liz O.
LizO: We’re a brother/sister team.
Chris: And, on behalf of the Charcot-Marie-Tooth Association, AKA CMTA, we are coming at you.
LizO: Coming at you not from coast to coast, from the East Coast. We’re both in Vermont, and I’m here for a couple more days.
Chris: Nice. We’re at our camp in beautiful Colchester, Vermont on the beach of Lake Champlain.
LizO: Yeah, it’s nice.
Chris: So, Liz O, guess what?
Chris: This is another fantastic episode of our famous podcast named what?
LizO: CMT, the number four, me, CMT4Me.
Chris: That’s right. What is this podcast all about? It is a comprehensive podcast covering all aspects of CMT, the voice of individuals living with CMT, their challenges, and more importantly, their inspirational stories. We will also cover research updates, fundraising, and interviews with the CMTA community, such as board members, branch leaders, CMTA leaders, but overall, an opportunity to spread awareness through the eyes of those with CMT. So, Liz O, I’m pretty excited about today’s podcast. Totally different, right? This podcast is going to focus on what?
LizO: Me and you. Who are we? Why are we doing this? Why are we even doing the CMT4Me Podcast? What is our relationship? What are we all about?
Chris: That is right, folks.
LizO: Should we start?
Chris: Yeah, that is right. There is a lot there, and we’ve been thinking about this for quite some time. We really wanted our listeners to understand a little bit more about Liz O and I and our past, our history, why we’re engaged in the CMTA, as Liz O said, why we do this podcast. What I’m hoping is if you folks have questions, you’re able to send those in, and we can answer them on future podcasts. So, where do we start, Liz O?
LizO: Well, do you want to start by saying how I got involved in the CMTA?
Chris: No, I don’t want to start there at all.
LizO: Okay, well then why’d you just ask me?
Chris: Just because I love to ask you a question and then totally, we don’t do it. So, I was thinking … Let’s start a little bit, right? So, I’d like to go back to kind of our upbringing. We were both born here in Vermont.
LizO: Oh, way back.
Chris: We’re going to go way back to the beginning. Just so our listeners know, I am currently … Actually, I’m going to be 56.
LizO: Oh, now we’re talking about you. What the hell? I just started, me, and then you’re like, “Well, I’m going to be.” It’s not about you. It’s about us.
Chris: Right, so this is the Chris Podcast, and you won’t learn much about Liz O, but you’re going to learn a lot about me. So, it’s perfect. I’m right in my element, right in my spot.
LizO: I should have never agreed to this podcast.
Chris : I know, I know.
LizO: Okay, let’s get going. Come on.
Chris: All right, let’s do it. Go ahead.
LizO: No, go ahead. You have this great idea.
Chris: No, it just made me think, right? I’ll be 56 in July. We were born in beautiful Burlington, Vermont. In reflection, it really made me think, what’s the story? And, what’s the connection? One thing about our upbringing, and I think it really ties into the fact that we’re engaged with the CMTA. We’re engaged with the CMT community. And, we’ll touch base upon our fundraiser, Cycle4CMT, going into its ninth year. But, really there’s a pretty good background in terms of why we are engaged and I think why we give back and where that really came from, right? You see where I’m going with this, Liz O?
LizO: Yeah, I do. I do.
Chris: And, what are some of your thoughts on why I think we have this foundation in terms of giving back to the community in a number of different ways over the years? Where’d that come from?
LizO: Yeah, I think the spirit of volunteerism, it came from … I don’t even know if that’s a word, but-
Chris: I was just going to say, “Is that a word?”
LizO Cool. It’s volunteerism. Anyway, it is today. And, it goes back to our mom who has always been very generous, giving, and not just with her family, but with people she doesn’t even know. This is an example, and I know you have many, many more, but at Halloween, everybody loved our house at Halloween, because she just didn’t give a Reese’s Peanut Butter Cup or a quarter. She would order Domino’s pizza, and everybody would just come and chow down pizza, go out. It was just so much fun, and people remember that to this day.
Chris: I still have friends of mine that are in their 50s, that they go, “Oh, my gosh. How’s your mom doing? I remember those Halloween nights.” And, she also would take the popcorn machine from, at that time, the candy store that our folks owned down on Church Street and be giving out popcorn as well. But, people loved that. Then, I remember we used to have to go out and pick up all the Domino’s Pizza boxes all around the street, because we learned the entire Burlington area. But, it was pretty cool. But, that was her thought, right? Doing something different, right? And, what more could she do? Like you said, there’s so many stories. I think about if you and I ever went with our mom, Bev, to Church Street downtown, one thing is everybody would run up to her. Everybody knew her, right? And, she was always trying to help people, and I remember-
LizO: Not only people that we knew from school, but she knew a lot of the homeless. She knew a lot of the people that didn’t have a lot of money, because that was her focus. She wanted to help this community in Burlington, right?
Chris : Yeah.
LizO: She was always out there.
Chris: That was a full time job.
LizO: Yeah, and she has a degree in psychology, and she would talk to these people. But, for us growing up, I hated it at first. Looking back, I didn’t like it. I didn’t hate it, but it was just, where do we have to have Thanksgiving, at St. Jude’s? This is a rooming house she had with people that didn’t have tons of money. It was Section 8 or whatever. And, we had Thanksgiving, but we learned to accept people of all kinds. It doesn’t matter about their financial background, right?
Chris: Yeah, yeah, and I think it was also her way of telling us, A, be fortunate you have a family, right? And, back to that Thanksgiving is about giving back. So, as a family, we will together give back to the community. And, I do. I remember that. I was like, “Oh, my God.” I remember this Thanksgiving, and she decided that, and we’re around all these 80, 90 year old people. What fun, though? She was so humorous. She dumped all these apples in this big container filled with water, and the elderly folks were bobbing for apples. She looks at me, she’s like, “Your turn.” I’m like, “There is no way I’m sticking my mouth in that water.”
LizO: I remember that.
Chris: But, it was great. It was adding fun, and the people loved it.
LizO: Mom is a lot of fun.
Chris: So, I agree with you. She is a lot of fun, but I remember it was that reflection of leaving and being like, “Though I didn’t want to go, that was a good day.”
LizO: It was.
LizO: Right, I am too, and I think life, honestly, and I know this was instilled in us early on, but I think life is about giving back. It’s about giving back to the community, and I take a lot of pride in giving back. Just to volunteer and to help a group of people is a gift in itself. It just makes you feel good, and you know that you can make a difference, right?
Chris : Totally.
LizO: That’s where the CMTA comes in.
Chris: Yeah, and I think talking about that is the CMTA and just thinking about Yohan and his diagnosis and really how you personally have been involved with CMT and the CMTA for how many years now?
LizO So, it will be 20 years in December of 2022.
Chris: And, folks, keep that in mind. That is 20-plus years total volunteering. When I say volunteering with Liz O, this isn’t five hours a week. This is 40, 50 hours a week, weekends, never complains, totally engaged. And, this is what her life has become. I will speak on behalf of those with CMT and people in the CMTA, so fortunate to have someone like that driving to advance research, help find a cure, spread awareness. And, the stories go on and on of what she’s done, but that’s pretty in-cresible. In-cresible? You like that, I just made that word up, in-cresible.
LizO: Just go with it.
Chris: I love it. Hey, instead of incredible, that’s in-cresible. Sweet, okay, I got that down. But, anyways, very impressive. That’s giving back.
LizO: So, when Yohan was born, we had no idea. We don’t have CMT in our family, and so he started exhibiting signs early on just with light sensitivity and walking on his toes. At seven, he was diagnosed, and as parents, we didn’t know what Charcot-Marie-Tooth was. We had never heard of it, and there were very few, few, few resources at the time. They gave us the address of the Charcot-Marie-Tooth Association. At that time, we had just moved from France to California, and I decided to go back and get a degree in psychology.
LizO: When I was done with that degree, we learned that Yohan has CMT. So, I’m like, “How can I use this degree?” It was sort of just meant to be. So, I just got involved, and there were two people working at the CMTA 20 years ago. We knew a little bit about 1A and other types, but nothing to the extent. We didn’t have the resources at all of what we have today. So, we started building the branch network that we have now and awareness month. It was so fun at that time, because we didn’t have much. With Jeana Sweeney, we just built out the whole organization to all these fantastic resources and met so many people. So, I do this for Yohan, but I just feel like the CMT community is my family.
Chris: Okay, that’s what it is. Yeah, no, it’s pretty impressive, pretty impressive when you think back. I come back to Yohan’s diagnosis and/or my first involvement with CMT, and I actually do recall. I think it was on a phone call where you said, “Hey, Yohan and CMT,” and my first comment was, “What do you mean? What’s CMT? What do you mean there’s no cure? You know where science is. There has to be a cure, and what does this mean for him?” And, it really took me, I think, quite a while to understand what CMT was and/or how that may affect Yohan. Obviously, you guys are in California, so I didn’t see you all the time. All I could hear are some stories about wearing braces and potential surgeries in the future.
Chris: Then, you guys would come to Vermont, and he was very young. You really couldn’t notice very many symptoms being expressed, but also knowing that there was this underlying kind of diagnosis that you guys were trying to navigate through and also trying to explain to the family. So, it was really … Then, the fact, I think for me was every summer coming to Vermont, and he would just … Every year, he’s older and older. Then, I could start over a period of time seeing some of these subtle or slight changes from one year to the next. That brings up the components of, at a young age, hey, let’s go for this walk. Hey, let’s go for this hike. Oh, my God. You’ve really got to come in the winter and try skiing or snowboarding. That’ll be cool.
Chris: And, he engaged in those items. Then, I could see over a period of time, it was like, well, I really don’t necessarily have an interest in doing that. Maybe that was his way to express some of the challenges, though I knew he would want to do it. I could just see that over a period of time, based on his symptoms, that got me a lot more closer to what CMT is and really grasping what this disorder is. I would think it’s probably challenging when you talk to someone who doesn’t know anyone with CMT or what that is. It might be hard for them to make that connection to really what it is.
LizO: It a little challenging, because I will say, “My son has this neuromuscular disorder,” and then they see him, and he looks fine. What are you talking about? You’re totally the making this up, but let’s just go through some of the symptoms that people with CMT have. Chronic pain, burning nerve pain, no feeling, because it affects the sensory nerve, so no feeling in your lower legs or your feet, in your hands. Your muscles start to atrophy, because the nerves don’t work anymore, so people get claw hands, claw toes. They have tremors. It can affect your back, scoliosis, kyphosis. Some people are affected with their vocal cords, their hearing. More people than I thought are affected by their breathing. People need surgeries and the feet don’t fit into the high …
LizO They either have really high arch feet or totally flat feet, and the toes curl. It’s a challenge, and the biggest challenge when Yohan was first diagnosed, they thought he had cerebral palsy. So, I’m like, “Okay, it’s very mild. It’s not progressive.” Then, they came back with a CMT diagnosis, and it’s a progressive disease. So, it’s not going to get better. It’s not getting better. There are treatments like exercise or physical therapy or occupational therapy or surgery, but it’s going to keep getting worse until we find a cure. So, that’s what I’m all about, trying to find research and spread awareness and increase the resources we have. We’re doing a great job in that, but I’m still frustrated that we don’t have anything to stop the progression. But, we’ll get there.
Chris: I think what also hit me really hard in terms of what CMT is, is this was years ago, I think probably in 2014 or so. I think that’s when I joined the board of the CMTA, and I went to a conference in Boston. That was my first conference. So, I’d been kind of exposed to what CMT is with Yohan, not really engaged with anyone else that had CMT and would read stories, positive and negative, et cetera. But, I’ll tell you, going to this conference in Boston, and you were there, and I can totally remember walking out of there that I now have a much better appreciation and understanding of CMT. A lot of things, if you’re not engaged with CMT, I remember the first thing I did. I meet someone over at a table getting coffee, and I go to forcefully do the American awesome-
Chris: Manly handshake, and I grabbed that individual’s wrist, and I’m serious, I felt like I broke their wrist. They just couldn’t really return that handshake that I was so accustomed to and brought up doing in terms of a standard greeting. Then, I looked around the room, and I could see mothers or daughters together in wheelchairs or people having difficulty walking, et cetera. It was really, really mind blowing. I think that was really the turning point for me, that not only through our family and Yohan, but really starting to think about what else can I do to give back to this community? And, that really prompted a lot of different actions, further involvement for me in the board, more engaged, I think, with Yohan, and as we’ll talk about is that leaning into which I’ll say, our ninth annual coming up in August Cycle4CMT fundraiser that I’m really proud of that’s raised over $1.7 million for research. That story in itself, which leads to a number of different topics, is between you and I, is how that fundraiser got started, right?
LizO Right, and before you go into that, I just want to say I’m looking at that picture in back of you, and I see you and Yohan. Yohan was here in Vermont, and I believe there’s always a silver lining in every situation, any situation that’s tough. The silver lining is that you and Yohan have forged such a strong relationship. He thinks the world of you, and I can’t thank you enough for getting involved, because we felt pretty alone in this disease. For you to come out and spend so much time and energy and get the word out and talk about it and understand it means the world to me. But, it also means the world to Yohan, and I can’t thank you enough. Really, he was here, and you guys went to breakfast. He goes, “I think I just want to be with Funcle Chris,” fun uncle. And, you guys just laughing in sync, it just means the world to me. So, thank you for being involved, and I wish more families would get involved in the lives of others with CMT.
Chris: I do. I love him. He’s so awesome. We have such a great relationship, a lot of respect for him. I can’t imagine not doing some of these things. I think too that that relationship with Yohan and the connection to CMT has also prompted my dedication to CMT, not only for him, but as I’m more engaged in the community, with the three plus million people worldwide, and really trying to think of how we can reach those individuals, how we can spread awareness, and what more we can do any way possible. And, the key is funding research, finding a cure for this disorder at some point in time. I do agree with you, Liz O. I think at some point, we will get there. And, you and I were talking about it this morning. The CMTA is a relatively small association. I think we’ve committed well over $20 million in research to date, but it takes so much money, right? It takes so much money just to get to clinical trials, and then the failure rate of clinical trials is very high. But-
LizO: I think the statistics were it takes between 400 million and one billion dollars to bring a drug to market. But, that doesn’t mean the CMTA has to put that much in. We have really attracted pharmaceutical companies and biotech companies. There are more people today working on CMT than ever before, and it will only keep increasing. So, there’s a lot of hope if we can get them to get more involved or we have something very promising. They can take that and bring it to market, because they have the big dollars, right?
Chris Exactly, and going back, Liz O, too, I do want to talk about the inception of the Cycle4CMT fundraising.
LizO: Oh, yeah, let’s talk about that Bahamas trip.
Chris: Bahamas trip, and folks, listeners, we’ll touch base a little bit upon Liz O and I in terms of our relationship, but what we would do as a family I thought is very important is to travel at least once or twice a year, which I don’t say that lightly, very fortunate that we were able to do that. And, I definitely do not take that for granted.
LiizO Can I say something?
LizO I just want to say that your kids had to follow a strict schedule for school, but we would just take Yohan out of school, because early on, we decided that seeing the world is educational, and we would do as many trips as we could. Because, honestly at the time, and we still don’t know what his capabilities will be in the future. And, I’m really, really glad we did that. And, we did take him out of school. Sometimes, he had homework and everything on vacation, but what he learned and the experiences he had, it’s just incredible, and we’ll never get those back. So, I’m so fortunate to be able to have done that with him, really.
Chris: Yeah, it’s cool. And, the fact is right when we would travel, Yohan, he’d do a lot of things. Then, as I stated earlier in this podcast, I would notice he would be able to do less items. He would still have a great time on vacation, but our focus turned a little bit to what was he capable of doing. And, it hit me, and it was 2014. We were in The Bahamas, me, you, Yohan, my wife, Mia, our son, Warren, and daughter, Lila. And, we are sitting there in a Starbucks having coffee, and I was just looking at Yohan, because his feet were all scraped as he was walking around the pool. His water shoes, he had-
LizO: Well, the day before, because I’m so scattered, I got there a day before you and left the day earlier, because I messed up the schedule and the days.
Chris: I forgot that.
LizO: So, that first day we got there, I’m like, “Let’s go in the pool.” And, we had these water shoes. Since he has pinky toes up in claw, we put holes in the pinky toe, and he was out there. He was in the pool and the lazy river, walking all around, and he got out. Since he has no feeling in his feet initially, he looked down. His toes were raw. He had scraped all the skin off his toes, and then the pain set in. That set us up for a limited, limiting vacation, and it was awful.
Chris: Yeah, yeah, no, I remember that. So, we’re sitting there having coffee, and I remember I had just started cycling at that point. I started chatting with you and with everyone there, I said, “What more?” It was going in my mind actually, before I expressed that. I was thinking, what can we be doing, right? I don’t want to just sit on the sidelines. There has to be something we could do. Thank God, you were very knowledgeable because you were engaged with the CMTA and talking about research. I started to think, hey, maybe we put on a cycling fundraiser. And, I have never done any fundraising. I think maybe you were engaged in some fundraising.
LizO: Oh, yeah, I did.
Chris: Maybe it was through branches and things like that, but I was totally new, new to biking. And, I remember saying, “Well.” You asked me what my thought is. I was like, “I don’t know. I just want to tell maybe 10 of my friends, and we’ll try to raise some money, and I’ll go down [inaudible 00:25:59] Vermont and sit on the beach afterwards, and we’ll cook some hamburgers and have a beer or so. Maybe we’ll raise a couple hundred dollars, and I can start there. Then, with the sister/brother team, with your energy, and I think that translated to my energy where, well, that’s not enough, right? What can we do? And, behold, we launched the first Cycle4CMT event in October. It was October that first year in 2014 in Vermont. It was cold.
LizO: It was cold.
Chris: But, it was cool, because we had probably 80 plus participants, and that event was more kind of family and friends oriented. I went out and I posted some cycling routes, and I had these little tiny signs on the side of the road that had arrows to go right or left. I didn’t realize, well, you’re probably at times going downhill, could be going 25, 30 miles an hour. Maybe you won’t. And, people didn’t even see the signs. Everybody went off course.
LizO: Remember, Kevin Thibodeau, he left, and we didn’t even know where he was. And, he came back miles later, not in shape or anything.
LizO: But, you know what’s great is everybody was laughing about it.
LizO: Everybody understood. That’s great. There were two people with CMT, and fast forward, if you go to the eighth annual, we have a lot of people with CMT attending, walking, cycling. It’s really become quite big, and we have an event this year in Wisconsin. Then, we have, well, not an event. We have a ride in Wisconsin, and we have a ride in San Francisco and people doing their own thing. So, it’s really expanding, and it’s really exciting.
Chris: They were.
Chris: Yeah, and it’s cool to reflect back, thinking, sitting in the coffee shop, talking about a fundraiser, and where we are today. As I reference, that has just grown. The attendance, we usually at the signature event in Vermont, which is now always the Sunday prior, the week prior to Labor Day, we usually have about 200 plus participants. There are new faces every year. There are more people coming that have CMT. People go out for a ride. We have a great breakfast. We have a full catered meal. We have live music. We enjoy some local craft beer and cider. We always try to bring in researchers, our leading scientists to talk about where we are in the research front. The cool thing is then we just have a great silent auction. That’s very powerful here in Vermont, right? The community is so engaged. Probably, we’ve had at times 100 silent auction items, ranging from people donating skis, to hiking shoes, to biking jerseys, to gift certificates, to hotels, and you name it. That’s a fun, but not an easy feat to obtain those silent auction items.
LizO: No, the Cycle4CMT is really a lot of work, and every year after the event, we’re just like, “Should we do this next year? It’s taking so much time.” And, what I remember is you have people like Paul Kang and Stephen Lee coming from Washington and Connecticut and talking about little Juliana who died at five years old from CMT. It’s very rare to die from CMT, but it happens. Stephen flew all the way here, and then we had the interns, Emily and Erin.
Chris: They’re awesome.
LizO: They both have CMT, and they’re so, so motivational and inspirational and just great young women. Then, when we go, “Oh, my gosh, we’re so tired.” You want to tell the story of Riley, Riley who came up to you?
Chris: Oh, boy, I’m serious, folks. I’m sure a number of you have done fundraising. It’s not an easy feat, and I’m not saying that to give Liz O and I credit at all. Like Liz O said, every year, we’re like, “Okay, that was the last event.”
LizO: That’s the last one.
Chris: “That was the last one. We’re totally exhausted.” I know when everyone leaves the event on Sunday, we’re laying on the grass, and now we still have to take everything down. No one can speak. We’re totally tired. But, to me, that’s part of it, right? You have to have some blood, sweat, and tears. These things shouldn’t be easy to begin with, but Riley, who’s so awesome, and-
LizO: He’s from Vermont, Essex.
Chris: He’s from Vermont, and how old is he now, Liz O?
LizO: I don’t know. He must be 13, 14.
Chris: Yeah, so Riley, and I don’t know how this got out there, but he at the time, maybe he was eight or nine. And, I’m talking to someone at the event, and Riley pulls on my shirt, and he says to me-
LizO: And, wait, wait, wait. So, Riley’s pretty affected by CMT.
Chris: He is.
LizO: He’s a CMT type four, so that’s two genes causing CMT.
Chris: Yeah, he’s in a wheelchair.
LizO: Now, he is is.
Chris: Or, now. He was wearing braces, I think at the time, needed assistance with walking, and made it over to me, and pulled on my shirt. And, I looked down at this little, little boy with his glasses and big eyes. He said, I think he called me Chris, which was great, “Chris, someone said that this might be the last year that you” … Sorry, folks. This is my emotional point. He said, “I heard you might not do this event anymore.” And, I looked at him in the eyes, and I could see his condition. I just was like, “Riley, this will not be our last event.” It just showed me how important that event was to him and to others. I think that has been not only with Yohan, but the CMT community and folks like Riley, that has driven that kind of tiredness and not wanting to do the event into passion and dedication to continue to move forward, and even though we don’t have a cure today, to stay positive.
Chris: When you can see someone with CMT really have the opportunity to enjoy that event, and as I always say to Liz O, that event, as I reference, is not feedback for Liz O and I in terms of what we do. That event is for people with CMT, and that is why we do it. It’s their environment. It’s their voice. It’s giving them updates on research and doing whatever we can to spread awareness and help raise the necessary money so we can continue on this research path. So, that was inspirational, and it’s very interesting. It’s been probably five years, and every time that story comes up, I just start crying.
LizO: Well, and then Riley spoke at one of the events, and hopefully, he’ll be at the event this year. He probably will. His mom [inaudible 00:33:04] is a good friend. The other thing is he attend attends Camp Footprint, and that’s been life changing for him, but I just remember talking about … He didn’t want to lose the ability to walk, and he has. And, that’s the progressive nature of CMT, and we need to stop CMT. We Need to stop the progression.
Chris: The other thing that hits me at these events as well is the positive energy.
LizO: So fun.
Chris: CMT can have a major impact, however I just find such a positive environment with those that do have CMT. It gives you encouragement and strength to continue to try to fundraise and find a cure, because it’s just such an awesome community. You don’t find people that are sitting there, looking for sympathy. They are talking about what they have accomplished and what they can do. Some folks say, “Hey, if I had a chance” … I don’t know if I would say … It’s hard, right? Some folks would be like, “I don’t know if I’d say. Obviously, I wouldn’t want CMT, but CMT has really made me into this incredible person.” And, that is very heartfelt, warming, and touching to me, to hear those stories.
Chris: So, it’s a great environment. And, folks, this is definitely a pitch for the Cycle4CMT event as well. If you have a chance to get to that signature Vermont event, you’ll be blown away by it. It is beautiful. It’s a great environment. It is a lot of fun. It’s a great cause. On top of that, as Liz O said, there are rides going on throughout the country. You can go to the Cycle4CMT.com website, learn all about the event. But, again that event is for you, and if you can get out there and help fundraise and spread awareness, that’s our goal, and we’d love to have you.
LizO: And, this comes back to what I was thinking. You said people are so positive, and we have such a great group of people who Cycle4CMT. But, I think part of that is talking about giving back, instead of sitting there and waiting for somebody else to do it. Get involved in any way you can, so you’re part of progress. You’re going to be part of our solution. You, your money, even if it’s just a little bit, if everybody just gave a little bit, we’d probably have a cure by now. So, honestly, I just think I can’t sit by and watch Yohan progress or my friends, Bethany, progress, or Jeana, or people I’ve come to love, and Kenny B. I can’t do that. I have to be involved, and all these people are involved, and it feels good to give back. And, it feels good to see progress when we do.
Chris: Yeah, yeah, totally. So, Liz O, you’re talking, and I’m just thinking about our relationship, right? We don’t see each other that frequently, maybe a couple weeks each year. Hopefully, that’ll continue to grow as we-
LizO: You’re too busy. You’re too busy. Every time I call, you’re like, “Yeah, okay.” And, I’m like, “Hey, so” … I’ve got to go. Bye. Got to go. Bye. Got to go. Bye.
Chris: But, you’re busy as well, and it’s interesting. It is a good team. You and I are really two totally different people, but there are a lot of common characteristics as well. I’m going to just give a little bit of feedback, folks, to get you the details of Liz O. And, I would say number one, lot of fun, right? Always laughing, very, very intelligent, very well spoken. We’ve already talked about how she gives back, but on the side, she’s totally scattered, totally scattered. I am always like, “She makes it through the day. She does. I don’t know how she does.
Chris: And, here’s a great example. What does she do yesterday? Comes down to camp. She’s like, “I am going swimming.” I’m like, “Perfect. Go swimming.” So, she puts her bathing suit on. I’m doing something on my iPad, and she comes back out of the lake, and she’s like, “I can’t see anything. I can’t see anything.” I’m like, “What?” She goes, “Did I just jump in the lake with my glasses on?” I’m like, “I don’t know. I don’t know.” So, I’m like, “Here we go.” So, I go out in the lake. I can see these footprints in the sand. I go way out there, and sure enough, there-
LizO: I’m trying to help, and I can’t see anything.
Chris: Yeah, she can’t see anything anyways.
LizO: I’m stirring up all the sand.
Chris: Yeah, so there are glasses on the bottom of the lake, which I recover for her and continue to move on. But, that is not a surprise. There are probably five to 10 of those items that go on through the day. Can’t find her car keys. Can’t find her phone.
ChrisO: She goes on a trip with Gilles, who is our chairman of the CMTA, and what does she do? She loses the car keys in the desert, and he’s out horseback riding. She’s going for a hike, and so thank God, she posted her walk on this app called Strava, and Gilles followed it on Strava and found the rental keys. But, my point is she makes it through in that type of environment, and she’s not scattered on other things. But, those type of things, which aren’t real important to her, you know what I mean? There’s other things, and she gets through it. And, I am a little bit different. I’m not saying I’m not scattered, but I’m a little bit different.
LizO: No, no, no. You’re very different. Listen to this. (singing). I can’t even remember the tune now. (singing).
LizO: No, maybe it is. But, I meant The Odd Couple. We’re sort of like-
Chris: Oh, that is The Odd Couple.
LizO: Oscar and Felix.
Chris: Good point.
LizO: I’m Oscar. You’re Felix.
LizO: So, you’re very organized. You’re very driven. And, you are very structured, and I am not. I am driven. That’s what we have in common, but you’ve always been like that, though. I just remember waking up in the morning, and you were nine. What nine year old looks outside of the window and goes, “Oh, my God, the grass needs to be mowed.” And, you get out there, maybe 10. You’re mowing the grass, and I’m like, “What grass? Who cares? Have it weeds.” It’s so interesting, and I remember I was kind of nervous about spending the night at camp here with you, because-
ChrisO: Well, I was nervous as well.
LizO: I know if I have any crumbs on the counter, he’s going to freak. I don’t know if I’m doing the dishes right. I’m just trying to respect your space. The other day, and I felt bad about this afterwards, but I don’t think of these things. I get a box. We’re over at your house. You have white furniture, which I think is stupid.
Chris: She gets the box out of the garage, folks, my garage that has been … It’s all dusty and things like that.
LizO: It’s not dirty.
Chris: What does she do? She’s like, “Can I have use this box to ship items?” I’m like, “Sure.” So, then what proceeds to happen?
LizO: Then, I take the box and put it on the white furniture and start packing the box. He goes, “Could you please take that box off the furniture?” I’m like, “Why?” I had no idea. It didn’t even dawn on me that the box was dirty or had dust on it. Then, a little aggressively, I kind of rubbed the box into the couch.
Chris: Yeah, that was very nice.
LizO: No, that wasn’t. It was just like it annoyed me, but I apologized later. I should just taken it off, but I don’t think of these things. We grew up just having a blast and jumping in mud puddles. What did you tell me earlier about the bathtub?
Chris: Oh, yeah. No, it was great. I think about growing up, right? And, this comes back to mom. Mom was very structured, very committed, high driving, tons of energy. Even today, the energy is off the charts compared to us. Education was really important to her, the whole aspect of giving back, realizing what you have, and just throwing that in there. Not to digress, but it just made me think, even at Christmas time, I remember as a little kid being in our station wagon, and mom would go buy a couple bikes or something and toys. And, we would drive through the old north end in Burlington, which was somewhat of a depressed area.
Chris: She would see a child or a family and stop, and we’d get out and give them these gifts. But, yeah, very, very structured, but also flexible. It made me think, she rarely got mad. I remember with our brother, Anthony, when you’re younger, you’re taking baths together, and him and I are just always creative. The bathtub is filled, and we’re pretending we’re on a ship, and we’re sliding down the bath, and water is overflowing out of the tub and going on the floor. Mom’s downstairs, and water’s coming through the ceiling and just, oh, okay, great. They’re having fun. Can you guys stop that?
LizO: They’re having a good time.
Chris: I grab blankets, and then I’d be sliding down the stairs and rip the carpet and whatever and smash into the wall. They’re just like, “Oh, the kids are having fun again.” So, that was pretty cool, right?
LizO: But, I think it was. It was, and we just had a lot of freedom. But, our personalities are very different and very alike. I think we’re very complementary. And, you make me laugh, too. You’re funny, so I like that.
Chris: Oh, well, same. Listen, I guess, folks, it’s a great relationship. Liz O, love you very much.
Liz Ouellette: Same back to you.
Chris: It’s cool, and it’s really cool to have the opportunity, these things, whether it’s the fundraiser, Yohan, the CMTA, has really, I think, also kept us connected.
Chris: And, at times I wonder, I think, boy, if we didn’t have that, will we still be connected? And, there’s part of me that says, “I know we would. I know we would.”
LizO: We would.
Chris: Because, there’s that sense of family and appreciation for one another and Yohan and Gilles. You love our kids, et cetera, so that family aspect is big.
LizO: It’s huge.
Chris : And, I think you said it well. I’m proud of that. I do think we have a good example of how a family can come together and strive to overcome a number of hurdles, specifically as related to CMT, right? And, there’s a lot more power with more-
LizO: That’s right, it’s not just me and you. Our parents, our siblings, our community, our family, everybody is involved.
Chris: Yeah, it’s cool.
LizO: They don’t even hesitate.
Chris: That’s good. I hope mom’s listening, because we need her to make a big donation this year.
LizO: Yeah, I know. This is the reason we’re mentioning her. No, I’m just kidding.
Chris: Get out your checkbook, mumsy,
Chris: So, Liz O, let’s talk a little bit about this podcast.
LizO: So this is an idea you had six years ago.
Chris: Years ago.
LizO: Yeah, and people were starting podcasts. We should do a podcast. At that time, I’m like, “How do you even do a podcast?”
Chris. I don’t know.
LizO: Now, everybody has a podcast, but you had this idea, and the board of directors actually supports us 100%, love the podcast. They love the podcast. And, thanks to Mark, it’s pretty easy. And, I love doing it with you. And, we have interviewed some people that are just amazing. Every single person, and so the CMT4Me podcast, and you came up with the name, which you’re very creative also.
Chris: And, CMT4Me. And, again, it’s another … And, keep in mind, don’t just push yourself aside on this one. This is collaborative. That’s what’s cool, and you’re just making me think, whether it’s back in Bahamas. I’m like, “I’d like to do a fundraiser,” but working with you continues that creative. And, where do we go? Because, you don’t want to do anything small, right?
LizO: No, I can’t.
Chris: You’re like, “Okay.”
LizO: It’s either 100% or zero.
LizO: That’s a problem, but that’s the way I am.
Chris: Exactly, so we work well together. That was really again thinking about, with my experience with CMT individuals is that, how do we give more individuals with CMT the platform and voice? As our intro says, it’s really their inspirational stories. How can we get more people with CMT connected to one another so they feel they have support? It goes to the same thing with the fundraiser. It’s a platform, and this podcast is a platform for individuals to express themselves, tell their stories.
Chris: It’s been cool, because there’s been some people that have listened to the podcast that then have reached out to another individual who we interviewed. Or, they’re new to CMT, and now they have resources. So, I feel really good about that. One thing I think we work hard on too, and someone made me think about this, was you don’t always want to just focus on the negative, right? Oh, here’s all the negative things going on. No, we’re realistic, and we talk about the facts, but there are so many great stories about overcoming challenges and sharing information. On top of that, the big goal is spread awareness, right?
LizO: That’s right.
Chris: And, we’ve got to spread awareness. That, I think, ties into how we can raise more money for research, if we have more and more people engaged.
LizO: So, I was just blown away yesterday, and I actually took a video of you soliciting merchandise or a gift certificate from a restaurant. You are such a natural. You just go in there, and I just watch you. Usually, this is our tactic. We walk in a store. I go shopping and buy something. Then, Chris starts talking to the owner about the cycle event, what CMT is, and tries to get a gift certificate while I’m checking out. Usually, the answer is yes, but you’re so talented at it. You just have no inhibition.
Chris: Wow, that’s cool. Thanks for that feedback. But, you participate as well, and it is a strategy. I’m like, “Liz O, you go buy something, because if you buy something, then how can they turn us down?” So, it’s great.
LizO: Then, if I don’t see anything, you’re like, “Well, I like this. I like that.
Chris: Right, so I usually walk away after her visit, multiple pairs of pants, shorts-
Chris Shirts, shoes, you name it. It’s awesome.
LizO: It works.
Chris But, it is, it’s fun, and it’s interesting. I always look at the faces of someone who we’re trying to solicit, and you go, “CMT,” and they’re like, “Okay.” And, then you keep going. This individual yesterday who finally came around, and you learn-
LizO I didn’t think he was going to.
Chris: I didn’t either, but then you learn-
LizO He was clearly like, “Whatever, whatever.”
Chris : You learn, things come up as you keep talking to people. What did he say? I said, “Do you bike?” And, he’s like, “Well, no, I have a motorcycle out there.” Then, that’s like, “Oh, well, I used to ride motorcycles. I had a Honda Shadow 500. Oh, that’s a great bike.”
LizO: So good at making those connections.
Chris: So, you make these connections. Then, you talk about, which I think is important, it’s that statistic of … I always forget. What is it, one in 2,500 or 2,800 have CMT? And, relate that back to say Burlington, Vermont or Vermont, population of 647,000, right? So, when you say, “Hey, we were born in Burlington. We’re native Vermonters, and by the way, you may not know it, but there’s over 200 people in our community that have this incurable disorder at this point.” They start to think, and I find a lot of times, after those discussions, it’s hard for them to say no. And, I don’t feel that they feel the obligation, but I think they understand. And, it’s that passion. And, Vermont is a really community-driven state that is always looking at ways to give back. That also makes it a little bit easier, but then people feel connected, right? You’ve got to bring them in terms of how they can help us towards our mission.
LizO: And, what’s really unique here is the community is important. The community feel, and community comes together when you’re in need. Vermont and the surrounding areas are just great for that. I just miss that. I miss it a lot.
Chris: Yeah. Yeah. Well, it’s good. It’s good. We’re on a good path, folks. Liz O, are we coming to the close of this podcast? I think we kind of covered our topic.
LizO: Yeah, we’re probably just talking. I don’t even know how long we’ve been talking.
Chris: People are probably like, “Oh, my God, will these guys shut up?”
LizO: Oh, my God, are they going to stop talking?
Chris: Right. But, folks, listen. For those of you listening to this podcast, this is our opportunity. We’re not going to do our standard close, but to really thank you. Thank you for listening. Back to Liz O’s comment about doing your part as well, if you can tell folks about this podcast, if you can direct them to the Cycle4CMT fundraiser or to the CMTAUSA.org website, we need all hands on deck here.
LizO: Back to the ship in the bathtub reference.
Chris: I know, I know.
LizO: All hands on deck.
Chris: And, Liz O, maybe some of our listeners can help us if we spread this right. What’s one of our goals that we’d love to do someday, is kind of-
LizO: Oh, my gosh, we would love to be-
Chris: When you think of the news, and what would we love to do? It’d be sweet.
LizO: I’m so sick of hearing negative things. It’s all negative. So, I see this-
Chris: The news? You mean in the news?
LizO: Yeah. Yeah, everything is just negative and worrying and worrisome. Let’s get a feel good story like us helping the CMT community to find a cure for this disease and talk about all the people that do such incredible things, despite the limitations that CMT imposes. Wouldn’t it be great, Good Morning America? Or, there’s so many, so, so many programs that we would love to be on.
Chris: Right, CBS News. Maybe we could be interviewed by someone who has a podcast now.
LizO: That’s right.
Chris: That has a greater reach.
LizO: Guys, we want to go national here. We want to go international, actually. We’d like to go international.
Chris: That’d be cool.
LizO: Get the word out about CMT. We work with people internationally, so let’s get this on. Let’s get going.
Chris: Yeah, let’s do it.
LizO: Do it.
Chris: Yeah. Liz O, have you heard of those Sprinter vans?
Chris: No, okay. Well, they’re these cool vans you can put your bike in. People are buying these things now and throwing their skis in there and bikes and whatever. But, it made me think, wouldn’t it be kind of cool at some point where we could have as your background as the CMT4Me podcast logo on the side of this Sprinter van, and we tour the country and go to these areas and interview people with CMT. Wouldn’t that be sweet? That’d be fun.
LizO: Yeah, it would be fun, and we’d meet so many people. Now, that’s a story. Now, you’re cooking.
Chris: What’s it? Who’s the-
LizO: Alan Jackson?
Chris: No, no. Yeah, yeah, that’s Alan Jackson.
LizO: CMT came out, and I’m like, “Chris and Gilles, you guys have to bike there. You have to bike there, and we can make a story.” Chris was like, “I’m not biking there.”
Chris: No, it made me think of Al Roker, right? He goes on the road sometimes and travels in this van and does the weather in all these different areas of the country. We could do the podcasts in all these different areas of the country.
LizO: Yeah, let’s do it. You have to just stop working.
Chris: Yeah, okay, that sounds great. I hope people from-
LizO: Hey, talking about the podcast-
Chris: I hope people from where I work are not listening to this. No, just kidding.
LizO: So, about the podcast, if you want to leave a review, and we’d love to have your review, Apple Podcast has a place for that.
LizO: Yeah, so I just wanted to throw that out there, and it’s available on Spotify, Apple, all the major podcast outlets. You can hear this podcast, CMT4Me.
Chris: Awesome. All right, Liz O, time to go. That’s a wrap, sis.
LizO: All right, thanks, everyone for listening.
Chris: Yeah, thank you.
LizO: Cycle4CMT.com or CMTAUSA.org. If you have an interesting story, let us know, info@CMTAUSA.org, info@CMTAUSA.org. And, watch us on YouTube. We’re live.
Thank you all for your unwavering support of a cause so dear to my heart – CMT. Yohan was diagnosed 22 years ago with this progressive neuromuscular disease (the nerves deteriorate and in turn. the muscles atrophy). Where has the time gone?
As we turn the page, Yohan, at 29, is starting a new chapter in his life. Despite a year of setbacks due to COVID, he never gave up his quest to find a satisfying job and he succeeded!
Gilles introduced Yohan to cycling several years ago. Having never biked as a child, Yohan did not know what it was to ride around the neighborhood with his friends. Now, he is experiencing freedom on 2 wheels – an exhilarating activity. His e-bike has changed his world.
As Yohan moves forward with his life, his CMT moves right along with him, damaging his nerves and making his muscles weaker and weaker. As a parent, it is extremely hard to watch your own child lose the ability to walk, open cans, and lack the energy to fully participate in life. Yet, Yohan never complains. He embraces his reality with humor and acceptance. Yohan truly is an amazing human.
It takes 10 years and a billion dollars to bring a drug to market. 90% of drug candidates in clinical trials fail. These numbers may sound discouraging, but because the genetic cause of CMT has been identified, we have been able to make remarkable progress recently. When one of our sponsored projects shows promise, our pharma and biotech partners step in to provide the additional funds to take them to clinical trials.
This year, my family (Me, Uncle Chris, Yohan and Gilles) is once again organizing Cycle 4 CMT events around the country. The signature VT event is on August 28, 2022. The San Fran Bay Area ride is on September 17, as is the ride in Wisconsin. Many around the country are doing their “OWN” ride, cycling anywhere, anytime before September 30, 2022.
After 20 years dedicated to CMTA, my time at this wonderful organization is winding down, but I refuse to disappear into the night. I’ll never be too far, and my heart will always be with my friends and family who deal with this cruel disease every single day. Whatever the future holds, let’s make this 9th annual Cycle 4 CMT the most memorable in CMTA history!
Here is my ask: Please sponsor me on behalf of Yohan. My goal is the sky, but I’m really aiming for the stars. My dream? To raise as much money as possible to change Yohan’s life and the lives of many living with CMT. To date, there is no cure for CMT. I have a big problem with that. Let’s change the course of this disease, together. Please give generously: www.cmtausa.org/elizabethcycle Checks accepted! Send to CMTA, PO BOX 105, Glenolden, PA, 19036. Please write Cycle 4 CMT n the memo line.
If you’d like to join an organized ride or do your “OWN” ride/walk to raise funds for CMTA research, please visit – www.cycle4cmt.com. Everyone is welcome!
I was flagged by Sister Helena in 5th grade; she sent me down the hallway to a dark room, where I sat until a woman instructed me, “Read the eye chart.” I started at the top row and slowly made my way down to the third row, “E, F, P, no, Ummm B, F? no, no E?” The lady told me to stop squinting, making the next letters even harder. “L, uh, T or, wait… E?” “That’s good enough,” she said. “Bring this letter home to your parents. I cringed. What had I done now? I was scared, but did not really know what I’d done wrong. I just want to hug that semi-blind 10-year-old with crow’s feet who’d been stumbling around in an unfocused, blurry world all her short life. Sad face. 😦
I will never forget the day I put on my first pair of glasses. I was not particularly fond of the frames my dad picked out. Old people have horrible taste. Seriously! I really wanted cool wired-framed “hippy glasses” just like John Lennon’s, but he picked out geeky blue plastic spectacles; I hated them. The lenses were so wide they hung over the thick plastic frame. “This sucks,” I thought. “I’m never going to wear these stupid glasses.” As ordered, I put them on, went outside, and was astonished. OMG! I could see the leaves high in a tree, the eyes and individual feathers of a bird, and people’s faces from across the street. It was a miracle!! Sister Helena… a miracle!
This childhood memory came waltzing along after a particularly illuminating personal coaching session with my executive life coach, Arda Ozdemir. With my thick-lensed spectacles, I still see pretty well, and the crow’s feet…..well, I still squint so they are even a bigger problem today. But it’s not about the glasses or the crow’s feet anymore.
Through Arda’s teachings, I realize I have been going about my day, blind to choice, possibility, and insight. My mind wears the pants in my psyche, leaving little room for emotion or self-reflection. I had become an automat living day to day without intent, feeling, or direction.
At first, I wondered what I had gotten myself into with these coaching sessions. The first couple of months were tough. I resisted. We talked about sandbags, anxiety, past events. We talked and talked and talked. Arda encouraged me to feel, but I told him I couldn’t. He asked me to close my eyes. I didn’t want to.
I started to trust. His method made sense. One day, I decided I was ready. I finally took that leap of faith and glimpsed within; I found my heart, bound by layer upon layer of imposed belief systems and rules, which were squeezing the life right out of me. I wanted to break free, but shedding my heart bandages was much too scary; I thought they protected me from past wounds. They did not. Personal growth begs openness, careful introspection, and exploration of deep-rooted fears and vulnerabilities.
Through my work with Arda, I’ve learned that change is not always easy or fast-moving, but it is possible and there is hope! Today, I’m more in tune, trusting my gut and paying careful attention to emotional triggers like anger, anxiety, sadness, and guilt. Before reacting, I try to remember to pause, breathe, work through the emotionally-charged situation, and explore the root cause of my reaction.
I have a secret! Did you know we all have the power to see reality in a multitude of different ways? Life is multi-dimensional. When you look at situations from diverse perspectives, it’s like looking through a prism…….every angle offers a unique view, some more appealing than others. I get more curious than angry and look for limiting life patterns when I’m triggered. Once identified, it’s possible to step out of the old ways and into the new by creating alternative pathways.
My heart is healing. With Arda’s guidance, I’ve been able to peel off the strips of gauze constricting my life pulse. Today, I see not only with my eyes (and glasses), but also with my heart, which is fluttering with joy. Seeing with the heart opens new horizons, illuminating a path to a happier, more authentic life.
Join me. Come along for the journey. Empower yourself with Arda’s teachings and lead a more fulfilling, meaningful life. It works.
Flipping through my expired French passport, Gilles made a loud gasping noise, “You haven’t been back to France in 18 years!” “C’mon. It can’t be that long,” I countered. Squinting to see the faded passport stamp, I made out 15/06/2003. “Yikes! Where have I been? What have I done? Where’d the time go?” I wondered. Those years were a blur.
The sands of time had slipped through my fingers in a blink of an eye. I was mortified. Going forward, I was intent on figuring out a way of decelerating time. And I think I’m on to something. But first, the backstory.
In 1989, Gilles and I met in Grenoble, France. I was on a Fulbright scholarship in Grenoble. As an aside, when I told my family and friends I was going to spend a year in Grenoble, many heard Chernobyl (site of the 1986 nuclear accident) and completely freaked out. A year abroad in Grenoble was much easier to swallow.
Gilles was returning from the US, where he’d been employed by IBM in California. We met through my brother, Ray, who essentially set us up on a blind date (a story for another time)! Two years later, we were married in Biviers, France. 2 years after that, our son, Yohan, was born, and 2 years following that celebratory day, I threatened divorce!
We had a very disturbing conversation which went something like this:
G: Elizabeth, want to move to California?
E: Are you high?
G: Seriously, I’ve been talking to colleagues at HP in Palo Alto, and they’ve offered me a once-in-a-lifetime opportunity (this is a phrase I hear more and more with time).
E: You’re a funny guy!! Fat chance. I love my life here.
G: We can buy a nice house, be close to the ocean, and travel the country!
E: Are you freakin’ kidding me? Nope. No way. Negatory. I am not moving. We’ve been here for 7 years and I’m loving my life. Why would I want to go to a place where blond hair, big boobs, short skirts, and facelifts were a thing? (In my defense, as a Vermonter, my only real experience with Californians was the TV show, Baywatch. That’s not me. Although I’d never really spent any time on a farm or in the backwoods, I considered myself a VT country girl!!)
This same dialogue went on for weeks, took different twists and turns, and created a lot of tension:
E: You can’t make me.
G: Why don’t you talk to my friends Jo and Neil.
E: Why don’t you take a flying leap off a cliff?
After 4 to 5 pressure-filled months, Gilles convinced me. I totally caved. Begrudgingly, I moved to the Bay Area with Gilles and Yohan in 1995, and though I rarely admit Gilles is right, he hit it out of the ballpark on this decision. I’m glad we moved.
During our first preview trip, I sheepishly realized the Bay Area is nothing like Bay Watch…dodged that bullet! In fact, people were friendly, the weather was ideal and life seemed bearable.
This past November, I went back to France after an 18-year sabbatical. I cannot pinpoint why I avoided France like COVID; it just sort of happened that way. Gilles’ mom, Blanche, has not been in the best of health, so I wanted to spend time with her. Life is super fragile.
Leading up to our European adventure, Gilles encouraged me to reach out to good friends with whom we’d lost contact. Remember, in 1995, PCs were beginning to make their way into the homes of the general public. Up until then, the only way to stay in touch was through costly long-distance phone calls or letter writing. Cell phones were a luxury item, texting came much later and internet searches were done through Yahoo.
Except for an infrequent “Like” on Facebook, notification of a Linked-In anniversary or a kudos for a Strava accomplishment, I’d little to no communication with my French friends. In all honesty, I was afraid to look up certain people in the white pages for fear that they had died. What if my email landed in the hands of the grieving family members or was simply launched into deep chambers of cyberspace, never to be found? I would never know if it was outright rejection, death, or incorrect contact information.
With a little luck and a lot of research, I found my friends; they were all living and breathing! We made breakfast, lunch,4pm tea, appetizer, and dinner plans (sounds caloric, right? I just decided I no longer cared about calories and chose to eat when I was hungry, not obey random habits or schedules). More difficult still was the 20 years later, 20 years older (not necessarily wiser) problem. How many wrinkles, liver spots, and white hairs can you count? Ugh.
Lastly, we don’t speak a lot of French at home, so my language skills were rusty. I worried I would not be able to hold an in-depth conversation which would have literally killed me. Take away my ability to talk, I flatline.
This trip was about diving in headfirst, living with doubt and being spontaneous.
Grenoble (not Chernobyl)
Driving into Grenoble, I recognized the snow-covered Alps, the Italian pizzerias next to the frigid Isère, the supermarket, Carrefour, and the eggs of the télépheric slowly gliding their way up and down the hill of the Bastille Fortress. If those reference points had disappeared, I would have had to make an appointment with a memory doctor for creeping dementia.
I used to walk everywhere, hour after hour, mile after mile, and I knew the name of the streets, the shortcuts through farmers’ fields, and every neighborhood store. I was shocked to realize the local bakeries, butchers, fishmongers were few and far between, and the restaurants had changed hands at least ten times, with new buildings everywhere. I guess that sort of thing is to be expected over a 20-year period.
In addition to my disorientation, I was surprised to see so many food/drink machines in France. When did France become automated?
Want some wine? Just bring your bottle and fill ‘er up!
How about a baguette? After some thought, I cannot figure out how the long baguettes make their way out of that machine? Maybe it’s a new thing – flexible baguettes!
Feel like eating a pizza? Put your Euros in the slot and they come out piping hot!!
In retrospect, I don’t think I ever really felt French. Being French is much more than language or a French passport. Being French is a way of dressing and thinking. It’s commitment to good food, pleasure, endless nonsensical arguments and a teasing sense of humor. And, as toxically positive Americans can be, the French weigh the scales in the opposite direction.
For example, if you like a meal, you’d say, “That was not bad. Maybe just a little more pepper next time.” Or, if you think someone is nice looking, you’d say, “He/she is not ugly!” Just a cultural thing that was really hard to get used to for a glass half full girl.
Annoyingly, my traitorous American accent was considered, “cute.” Okay, I’ll take the compliment. But, at the time I just did not want to be different. I yearned to fit in.
As for my size 11 athletic shoes, yoga pants and 5’9″inch height (skyscraper tall in France), my being screamed, “American Tourist! Right HERE. Come and see the American Tourist!!”
As we visited friends and family, many of those same fears and inadequacies came roaring back with vengeance. But, I was able to move beyond the discomfort, because those details were no longer important to me. If I was seen as too loud, too tall, too hard to understand, that’s okay. It just did not matter anymore. It’s taken 59 years, but I am more and more comfortable with who I am. Love me for me, or not at all.
As I look back on the 2 weeks we spent in France, I am grateful to have had quality time with Gilles’ mom.
We also reconnected with many good friends, who welcomed us with open arms. The icing on the cake was the time I spent with my good friend Bethany, catching up, visiting Monaco and celebrating her 30th birthday together at the fancy Negresco hotel.
So, what’s the secret to slowing the perception of time?
First, as I age, I realize that time slows down when my attention is on the now and I prioritize mindfulness.
Secondly, boring daily routine is a time-eating monster, so seeking out novelty, as would a child, is a must. Long-lasting memories are built on deep emotional experiences.
Next, I am starting to limit my time checking email and scrolling through social media channels…..literal time wastes.
By seeking quality over quantity, and focusing on the present moment, I am making a conscious decision on how I spend the seconds, minutes, hours of my life. I know. It sounds good on paper, and no, I don’t have this all down to a perfect science; I am a work in progress, but aren’t we all?
We’re back! Yohan yelled, sliding the door to the garage open. I noticed he was walking funny, not CMT funny, but like he had a stiff leg, a heavy foot, an injured limb? My perplexed look begged the question… What now?
He brushed off my concern, acting if I were being overly paranoid and concerned (like usual). “We had a great ride and of course, on the last mile, I was tired and I took a spill. I just sprained my ankle… and…well my elbow is banged up. Oh…. and sharp stick pierced the palm of my hand when I hit the ground, but overall, I’m fine. It’ll be better in a couple of days, he said, limping down the hallway.”
After a hot shower and short rest, I took a look at the damage. “My ankle is hardly swollen,” he insisted. I pointed out that the last time I had looked at his ankle, I could see a prominent ankle bone. Now it looked puffy and bloated, as if a small jelly fish had snuck in there and took up residence. So, the crutches came out of the closet, along with the sickening memories of past orthopedic surgeries, months and months of plaster casts, pain, boots, stinky feet, scars, blood and sores.
Our bald kitties ran across the hardwood floor to greet him, but one look at the clanking crutch made them hit the brakes and off they went sliding uncontrollably, face planting into the wall. Thank God the cats make us laugh!
Recognizing the all too familiar clunk, thud, clunk, thud of Yohan’s footsteps as he made his way across the room, I too wanted to hit my head against the wall, cursing CMT to eternity and back.
Yohan’s had so many trips, falls, ankle sprains and surgeries, he knew the drill. No, not RICE. We changed that acronym to RICED. Rest. Ice. Compression. Elevation. Drugs…can’t forget the Tylenol, Aleve, etc.
There wasn’t a lot of pain, but by Monday, Yohan intuitively knew he’d better get it checked out by his doctor. This was the foot on which he has had 2 reconstructive surgeries, with mediocre results.
When the films were placed on the viewing pane, there were a lot of aahs and oohs. His x-rays lit up the room like lights on Christmas tree. The techs were amazed at the hardware holding his foot together. But who was the jokester who took a pen and drew a fine line across the outer leg bone?
Diagnosis? A hairline fracture of the fibula requiring 2 months in a walking boot, 24/7, except to bathe. Ugh. Well, it could have been worse, but it still sucks.
Home we went, trying to wrap our heads around the news. The first order of business was to purchase an even-up foot riser to avoid throwing his opposing hip out of joint. He learned pretty quickly that the even-up foot risers are treacherous as they get caught on everything…..even air. The utmost caution is warranted. And if you don’t catch the edge of the foot riser on something, the cats will make sure you fall…..hard.
Walking on 2 CMT feet is tough. Put one of those in a boot and now balance on one very high-arched foot, whose toes curl in and up, and sprinkle in some ankle supination (outward turning ankle). Not for the faint of heart!
Next, he looked for additional boot liners. Seriously, they send you home with 1 boot with liner. The “hand wash only” liner smells like death after the foot is enclosed within its sweaty fabric for only 24 hours. Yohan ordered a second boot (the lux version of the same brand) so he could wash the liner every other day. Luckily, when a piece of the plastic from the first boot started digging into his heel, he had a cushy alternative.
The pain from the fracture was bearable, but he started to get a painful pressure sore on the bottom of his foot which thankfully abated when slipping his orthotic into the boot. The first several nights sleeping with the boot were tough, but gradually his body got used to the inconvenience.
This morning, he woke up with a smile!! He was celebrating his 2 weeks down, six weeks to go in a boot! He’s a glass half full kind of guy.
Taking a step back, here are my reflections:
Yohan’s new electric mountain bike offered a rainbow of opportunity, where, for the first time in quite a long while, Yohan could just be one with his friends, his dad, and his people. He did some pretty amazing rides, going places and seeing things not seen before. And these days are not gone, just suspended for a short period of time. Not the end of the world, but a bummer all the same.
I guess we all have ups and downs. Personally, I prefer the ups, but don’t we all? I believe the ups build experience and self-esteem and the downs build strength of character. And then there are all the in-betweens. Every emotional state –happiness, sadness, anxiety, fear, anger – is transient, so accepting the peaks and valleys with calm and acceptance makes each situation a little easier to handle.
Life’s highs and lows are an inevitable part of being alive, so I try to enjoy the highs, learn from the lows and experience everything else in between with an open heart. I know….easier said than done.
Yohan will get through this small setback. It will become a faint but unforgettable memory that will be part of his ongoing arsenal when dealing with upcoming challenges, setbacks and successes. He’ll get back on that bike…of this I’m sure. Why? Yohan is no stranger to adversity.
He’s not giving up or giving in. He’s found an activity he thoroughly enjoys, an activity which is exhilarating and fun, creating long-lasting memories of freedom and adventure. Also, he’s determined to cycle in the Cycle 4 CMT event with his Uncle Chris, his dad and maybe even me! The Cycle 4 CMT (in person or virtual) is so much more than a cycling event……It’s a celebration of strength, resilience and community.
Join us in the spirit of uniting with like-minded people, to fund research to put a stop to CMT. There is no cure for CMT… yet. But there will be because we, our CMT warriors, friends, family, loved ones, are going to make it happen. Grateful, so grateful for our community. Xo
How should I start? The beginning’s always a good place! Join me on my journey!
As a child, all the tell-tale signs were there; you know, the not being able to run fast, tripping over your own feet or hanging onto the old rope swing across the river. Yes, I got wet EVERYTIME!
I was also diagnosed with Perthes disease (a condition where the top of the thigh bone in the hip joint loses its blood supply, damaging the bone.) and treated accordingly, with 2 weeks in traction. My leg was set in a cast and weights were added daily in the hospital to pull the joint apart.
At about 17/18 years of age, I spoke with a GP (general practitioner) with regards to my hammered toes. The response was, “We wouldn’t do anything about them unless you couldn’t walk.” It occurred neither to him, nor to me anything more was wrong.
I left the field of education at 19 after 3 years working as an apprentice chef in Jesus College, Cambridge University. I evolved within my time here from boy into man and was worked hard by my mentor (sous-chef), but he saw the potential I had. In my 3rd year, the college turned 500 years old and on my shift, we celebrated the new £1billion library; HRH Queen Elizabeth & Prince Philip visited for lunch….. The very lunch I had to cook!! Apparently, I was the youngest ever apprentice in 500 years and was being presented to the Royals in the afternoon.
From here, I progressed in different establishments, one that Jamie Oliver’s dad, Trevor, owns. At 29, I was running my own catering business and had 3 different kitchens to run. Several years later, I was diagnosed with carpal tunnel syndrome I had surgery, which made little difference. The odd pot of soup or sauce would hit the floor or occasionally I’d trip. only to dump yet another plate in the bin.
I went back to work for another company and closed mine down. It was an easy little job in a busy garden center. It didn’t change me though and physically, nothing changed either. But gradually, it became apparent I had lost partial hearing. We worked around it for a few months. I got hearing aids….Great! At least I could hear the birds again. Then came the wrist pain again, so back to the GP I went. “I’m sending you to see a neurologist,” he said, somewhat puzzled.
I walk into the neurologist’s office and offered to shake hands. The next line from her totally threw me: “Can you remove your socks and shoes for me please?” A rather strange request for someone with wrist issues! Looking at my high arches, she pointed out my pes cavus feet. With this, she announced, “Mr. Neville, I’m sending you for a genetic blood test and I’ll see you in 3 months time. I believe you may have Charcot Marie Tooth disease (CMT).” At this point in time, I was 38 years old.
In the UK, we’re fortunate to have our NHS or National Health Service for which we pay in a national insurance scheme on all earnings. If we have treatments, certain medicines or appointments, it’s all covered.
De Novo or New Mutation
Anyway, the results were in and verified. I’m a CMT 1A mutant, meaning I have the first known case of CMT in my family. I knew nothing about it, knew no one with CMT and was directed to speak with someone at Muscular Dystrophy, UK. Muscular Dystrophy UK has a fantastic advocacy service which is free and many CMTers who have trouble with grants, equipment, etc. MDAUK helps these people in a number of ways. They even helped me with a grant for my mobility scooter!
Surgery wise, I’ve been quite lucky in that I’ve had toes 2,3 & 4 fused on the right foot. Both big toes have had Jones procedures ( fixing and screwing the big toe so it no longer bends and the tendon is removed to keep it from moving.) I’ve had both Achilles tendons lengthened and one ruptured Achilles tendon I still need to deal with. I’m awaiting surgery where a tendon from my shin will be moved to support my left Achilles.
The Charcot-Marie-Tooth Association (CMTA) was the first Facebook group I joined and decided the UK would benefit from a similar group, so I created the Facebook group – CMT Friends UK – England. We are now 5 years old, with over 1600+ members. I’ve had specialist training in peer support and I’m also about to take a course in adult safe guarding (a framework which safeguards employees from exploitation).
Today, I’m dedicated to helping others as they get diagnosed with Charcot-Marie-Tooth disease. I am able to empathize with their struggles in daily life with simple tasks. I believe we have to push ourselves daily because if we just sit back, CMT wins. Over the last five years, cmtfriendsuk has made a difference in people’s lives.
I’ve had several people telling me that they no longer feel lost or lonely and have a safe place to rant, ask silly questions (they turn out to be vital) and most importantly of all, be understood. The first thing we say is, “Welcome aboard the CMT crazy train!” We have 1500+ members who have walked in your shoes and sung from the same song sheet.
I have a very close friend who I came across in CMTA Faebook pages around 5 years ago. Sophie was diagnosed with CMT 1A at a similar time as me and now we’re like brother & sister. We both reached out and found each other. Adam Miller is a good friend and admin on cmtfriendsuk. Adam often tells me that I saved him from the pit of destruction. We’re like brothers.
In fact, I keep myself positive by engaging with many people across the UK with CMT and strengthen bonds with those who are in the shoes I wore 5 years ago. Peer support work is a fantastic opportunity to work with people who are in need of help, a shoulder or a virtual hug. I’ve found that by helping others, it then in turn helps me as I stay focused.
For newcomers to the group, the most vital information is: “You are not alone anymore!” There are others out there. The best thing to come from CMT? The CMT Warriors!
On occasion, I’ll be contacted by the local hospitals to be a live model for training purposes of new neurological doctors in training. Each appointment I attend, I’m armed with CMT literature for both patients and medical staff.
I’ll be 44 in August. I’ve had 7 operations and more to come. I try to live as normal a life as I can with CMT. I go fishing in my spare time and love the great outdoors and fishing (I caught the biggest known fish from the nearby lake, (27lb 4oz) . Last year, my stepson Danny jumped out of an airplane from 10,000ft and raised £520 doing so.
I also love birds and taking different pictures or videos.
I live with my partner Tracie and we share our anniversary on April 26, 2021 ( 8 years together). Tracie is my rock, soul mate and love of my life. I have 3 children: a 21-year-old son with mild CMT1A, my princess daughter, 17, who also has CMT 1A and my youngest is 9 with no signs yet. Although they live on the opposite side of England, we often facetime with them.
My moto in life is a simple one. If I can make one person smile each day or feel better about themselves, then I’m winning in life.
If anyone wishes to follow me on Instagram please feel free to do so:
I chose the name the_cmt_warrior as felt it fitting for myself as I battle in many ways against CMT and often refer to it as a realm within which we live. We all battle for the long run and a cure for the future to come but until then, we must fight.
One thing that stands out that I did achieve was turning the town purple for purple Tuesday. Attached is a video of me on UK TV about this. Enjoy!
CMT – What are your thoughts? Got a story, suggestions, wisdom to share? I’d love to get to know you and possibly share your story. Write to me at:
My name is Jeff Dols. I am 71 years old and I have Charcot-Marie-Tooth disease. I don’t mean for that to sound like an AA meeting, but it’s just a few basic facts. While it’s not my intent to preach at anyone, a little preaching may be involved.
I was diagnosed in 1964 at age 14. The clumsiness, sprained ankles, strange walking gait, hunched shoulders, and spinal curvature were all there but not connected. It was a broken hip from a fall to finally lead my parents to try to find out what was going on. That evolved into a day at Stanford University Hospital Clinics where I sat in an exam/conference room for 5 hours in a thin cotton gown as 5 teams of doctors poked, pricked, measured, prodded, tuning forked, zapped and generally explored. At the end of the day, I was excused and my parents were told I had Charcot-Marie-Tooth disease. I was told a few weeks later, but there were no details except that the disease was inherited, degenerative and had no treatment.
My mother was diagnosed too, but only after a lifetime of being treated as a Polio patient.
At age 16, I looked CMT up in a Medical Dictionary. It said, “a progressive, neuromuscular disorder, occasionally fatal.” So far, the fatal part has proven to be wrong, like so many things about CMT in the early years.
I have been lucky in that my disease is fairly mild. I had a mostly normal childhood and did the things most kids did, just not very well or as fast. There were things I could not physically do and things I was not allowed to do. I was just “a bit off”.
My diagnosis in 1964 gave me the starting point for answers to the question of what was going on with me. I learned I was never going to make a living with my body, so the NFL was out. I figured I better get an education to make a living. My mind is the one part of me CMT has never touched. While some may disagree, this is my letter, my life and so my reality.
This letter is not a complaint about my life or CMT. I went on to college, had a 40 plus year career in Sales and Marketing that took me all over the county and around the world. I met all types of people and experienced many different cultures. I would not change any of it. I worked hard, had a good time (mostly), and learned a great deal about myself along the way. CMT taught me how to deal with people and made my career choice ideal.
Now to the point, this letter is about the lessons I learned in 55 years of dealing with CMT.
I don’t use CMT as an excuse to get out of things. It’s dishonest and an abuse of those around you.
I learned to work around CMT issues because it was the only way I could live my life. Early on, when no one had answers, you had to be creative and make it up as you went along. That ability is key in dealing with CMT.
I am not hesitant to ask for help when I need it, but I don’t let people volunteer to help when they think I need it.
If I can do something, I will do it, no matter how long it takes. Eventually, CMT may tell you to go find a different way but CMT has probably been telling us that for years.
When people stare at the way I walk or at my leg braces or how my hands cramp up at the worst times, I make a joke about it or ask if they are having a bad day too. Not in a confrontational way, but with a smile and a genuine desire to help put both of us at ease and to remove the barrier CMT can be, especially with kids.
Treat your doctors with respect, the same respect you show your plumber. You hire either one because they have an expertise you don’t. Treat both with respect until a time comes when respect is not mutually viewed as required. Then tell them how you see things and realize it may be time to find a new plumber.
I am 71 years old now and I still manage an independent life. It’s a more limited life than 20 or 30 years ago but whose isn’t. I make it a point to always look for tools and tricks that make life just a bit easier.
By tools and tricks I mean:
A button hook to buttoning my shirts and pants.
A small hook I keep on my key chain for those time when I can’t manage to pull my zipper up. It’s embarrassing to walk into a public restroom with your shirt tucked in and come out with it untucked. Can be a bit drafty too.
A sock puller aid to get my socks on and off.
My AFO’s allow me walk in a mostly straight line. And I do walk, three to four times week, with my special walking stick to help keep me going in one direction at a time.
My AFO’s are great shoehorns too.
My Velcro strap shoes save me time, frustration and limits the use of bad words that come out with trying to tie shoelaces.
I drop things all the time and to pick them up, I keep BBQ tongs handy. My wife calls them my “Geezer Tweezers”. I have 4 pairs scattered around the house and garage.
Soft handled knives and utensils make it possible to safely grip a knife so I can still cook. Yes, I can cook. Soft handled flatware is in the future though.
My Kindle means I can read most any book I want without the struggle of turning actual pages. When you spend so much time trying to turn a page, you tend to forget what you just read. Reminder, I’m 71.
I love my glass of wine and I found a cork puller I can use. Because of balance issues, I limit it to just one glass and only with dinner. I really miss that second glass though.
I still drive. Thank God for all the safety features cars have now. They keep innocent people safe.
I type 22 words a minute with 7 errors. Voice to text software is in the very near future.
An often-used tool of mine is a large master closet with no exterior walls. On bad days, when things really get to me, it’s where I go to shut myself in and rail at the gods and yell at the top of my lungs. Never mind what words I may use; the neighbors can’t hear me and why would I care anyway.
But even with all the helps and the aids, the secret weapon that makes my life work is my wife, Julie. We have been married for 30 years. She has seen the best and the worst of me and she is still here. She knows what may be coming and she is still here.
When I am being an ass, she points out that I am being an ass, not always in the most tactful manner but she has rights and I tend to be “insensitive” on occasion. Remember the closet.
She laughs at me on a regular basis, even when I can’t see the humor. Example, in a furniture store, I got my AFO caught under a piece of furniture and no matter how hard I tried, I could not get it free. Julie laughed so hard I though she going to pass out.
When I do something especially stupid, she will yell, “Jesus Jeff”. She has yelled it so often and so loudly I think the neighbors wonder if I am some sort of demented deity.
Julie always has my back and will help when asked, even when she doesn’t think I deserve it.
Everyone needs a Julie in their life. If you have CMT, the need is greater.
So, the advice I would give kids and families dealing with CMT based on my 71 years of dealing with it:
CMT is going to win most battles. The trick is to make sure you lose on your terms. Don’t just accept, fight back and look for workarounds.
CMT affects many aspects of our lives, but it will not define who you are unless you let it.
As much as possible, don’t let CMT limit or constrain your life.
Don’t be afraid to ask for help, but always look to yourself first.
I keep physically active and exercise regularly. CMT will rob your physical abilities so do all you can to keep the strength and muscle tone you have.
Ask questions of your doctors and care givers. If you don’t understand the answers, ask again. Remember, you’re the one paying the bills and, in the end, they’re all just better educated plumbers.
Nurture friendships and make sure they feel free to call you an ass when you need it. If nothing else, it starts a conversation.
On bad days, don’t be an idiot and bring everyone around you down. You may have CMT, but the world does not revolve around you. Remember the closet.
On the good days, share it with the people who make the days good. They should share the good too.
A life with CMT is a life with lots of twists and turns, roadblocks and cliffs. Deal with them as best you can but always remember, each new issue is a shift to your new reality. Use the tools you have, adapt, and keep moving.
A life well lived is an adventure. If you have CMT, it can be a bit more adventurous but that just means the rewards are greater and the memories more impactful. And when you get older (and you will) and look back on your life, don’t just look back, but turn around, look forward and go see what’s next. The adventure ends only when you allow it to.
Here’s to cures and treatments to come so today’s CMT kids will be the last generation to be challenged by CMT.
Thanks so much to Jeff for his CMT story. It’s full of life experience, humor and common sense strategies. I feel grateful to have been given the opportunity to share his story with the CMT community. There is something for everyone, so enjoy!!
Do you have a CMT story? Would you like to share it? If so, write me: email@example.com I’d love to hear from you!
My son Yohan was diagnosed with CMT at 7 years old. We have no prior history of CMT in our families. Yohan has CMT due to a new spontaneous genetic mutation. He’s the first in our family to have CMT. Though Yohan’s CMT has thrown roadblocks and presented challenges in his life, it’s also made Yohan resilient, empathic, loving and kind.
A huge thank you to all our friends and family who have supported Yohan throughout the years. My husband, Gilles has always been so good at finding ways to spend quality time with Yohan, engaging him in so many activities: camping, horse riding, kayaking, and now, mountain biking. Yohan’s Uncle Chris has also had a profound influence on Yohan throughout his lifetime. Here is a chapter in their story.
Yohan’s CMT Story – Uncle Chris
By Yohan Bouchard
Since I was 4 months old, every summer (and a few below-zero Christmas holidays) were spent visiting my mother’s side of the family on the east coast. Vacations in Vermont were a blast – often the highlight of my year. I have such fond childhood memories of our adventures, which included spending time with my grandparents, aunts, uncles, cousins and longtime friends.
In particular, I spent a lot of time with my Uncle Chris; we’d go fishing, hiking, and swimming. In winter, he’d also take me skiing and snowboarding. But, as my CMT progressed, it was more and more difficult for me to keep up. I realized I was participating less and less in those outdoors activities, which we both enjoyed so much.
Snowboarding in VT with my dad and Uncle Chris.
Throughout the years, Chris and I had grown very close; he was always there for me regardless of my limitations. He knew my muscles were getting progressively weaker and noticed I was becoming more limited in my physical capacities. It was hard for both of us to embrace the effects of CMT, but we always managed to find alternative activities, like fishing, swimming and just some plain ol’ goofing around.
Goofin’ around with Uncle Chris and Warren
When Chris first brought up the idea of organizing a CMT fundraising event centered on cycling, I was impressed by his drive to actively raise money for a CMT cure. Witnessing his passion first hand, I too got excited by his vision which was to launch both an in-person and virtual Cycle event to fund treatment-driven research. I was convinced it would be a phenomenal successful, and I was not wrong. .
Over the last eight years, the Cycle 4 CMT has shown me just how far my uncle, and all my family and friends everywhere are willing to go to support me and so many others struggling with my CMT.
A surprise visit to the 1st Annual Cycle 4 CMT event
After the second or third annual event, I decided to face my fears and try to ride a bike again. My childhood adventures of being scared and unbalanced came back to haunt me, but I persevered. I wanted to show my Uncle Chris how much his effort, time and love meant to me. I biked around my college campus a bit, but that was the extent of my efforts.
Last year, with my dad’s encouragement and help, I gained confidence while I peddled on streets and swerved around people; I got back in the saddle. I was determined to actually ride alongside Chris and my friends on one of the Cycle 4 CMT routes. Of course, COVID had other plans, but it did not stop me. I did cycle in the Virtual Cycle (and Walk!) 4 CMT event with my dad and a group of friends over the Golden Gate Bridge in San Francisco. It was extremely fulfilling to do the actual ride with my dad and peers instead of sitting on the sidelines. My new electric bike was a game-changer!
Me and my dad, Gilles. We don’t go around obstacles, we face them straight on!!
I’m so pumped to go to Vermont this year and finally ride with my Uncle Chris in the 8th Annual Cycle 4 CMT. I will realize this dream as I want to show Uncle Chris how all his work has inspired me to face my fears and overcome them. I am extremely fortunate to have a supportive, loving family and an Uncle who is willing to go the extra mile.
Registration opens March 15, 2021. We are having both an in-person event in Charlotte, VT, on Sunday, August 29 and a virtual even from March 15-August 31, 2021, an anyone, anytime, anywhere can participate!!