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.
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