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.
Last week, I purchased a top-of-the-line 4K LED Smart TV with enough options to bedazzle even the most technologically gifted. Some of the features were intuitive enough that I proudly disregarded the instruction manual altogether. To my dismay, I soon discovered that a good number of even the simplest functions were complicated, puzzling and downright impossible to comprehend even with the handy user’s manual.
New Toy – LED TV
Realizing my dependence on this pamphlet of how-tos, I reflected upon all the parenting guides I have purchased over the years, all dealing with every different aspect of the child imaginable: the terrible twos, sleeplessness, anxiety, positive discipline, the emotional lives of boys, tolerating teens, etc The one book I have yet to come across is called the “THE MANUAL: Raising Kids With An Unexpected Diagnosis (Like CMT, a Progressive Nerve Disease).”
My instruction booklet was not included in my take-home packet from the hospital when Yohan was born 25 years ago, and I still fantasize about getting my hands on a copy of this yet non-existent source of knowledge.
Initially, I learned to care for my bundle of joy by asking questions, reading a selective few of those parenting books I mentioned above, taking advice from others (even if unsolicited) and relied heavily on my own maternal instincts. Through trial and error, my husband and I, as do most parents, strove to raise and nurture our child to be a resilient human being, who would hopefully be happy, successful, compassionate, friendly, confident, etc….. None of these attributes are ever guaranteed, but parents can and do influence their children to a very large degree by modeling behaviors and values, including empathic listening, acceptance of the whole child, unconditional love, acceptance and positive discipline.
Born with unique dispositions and temperaments, every child will integrate what he or she witnesses, observes and experiences to form a personality, which is in a state of constant flux, molding to and shaped by the surrounding environment. Raising children is truly a humbling adventure, where perfecting parental skills comes through valiant efforts on the part of the father and/or mother to do the best they can at any given moment.
And just to keep us on our toes, life has this nasty habit of throwing wrenches into our well thought-out and admirable plans and dreams, forcing us to change directions or reroute our individual and family’s journey throughout life over and over again.
For instance, when parents are told that their apparently healthy and precious child has a progressive neurological disease called CMT, (or any other chronic illness or disability) the world as they knew it comes to an abrupt halt. For a while, time just seems to stop as the shock of reality works its way through to the senses. With no current treatment or cure, CMT is a group of diseases whose effects vary greatly from one person to the next, even among members of the same family. The fear of an uncertain future for our beloved child creates a chaos so disruptive, parents may inevitably experience and re-experience a whole gamut of different feelings anywhere from grief, rage, disbelief, depression, anxiety, sadness, hopelessness, to guilt and disappointment. This flurry of unyielding and varied sets of emotions is unequivocally normal and expected in the face of such devastating and unwelcome news.
We immediately wonder what this diagnosis means for our child’s future – will she be able to play the piano, have children and fulfill her dreams as an actress? Will his legs remain strong, what about his basketball career, and just how much will my son be affected? Will he/she become more or less disabled than me, than my mother, than other family members? As concerned parents, we all have a tendency to get ahead of ourselves by asking a million questions about the fate of our children by continuously wondering and inquiring about what the future has in store, trying to predict what cannot be foreseen.
To top it off, in the midst of this traumatic news, unsettled parents must return home to their children, bearing the intolerable news that will inevitably change the lives of every single member of that particular family. How hard it is to remain calm, in control and at ease after you’ve been hit with the CMT hammer! In these delicate situations, let’s not forget that children are savvy readers of parental anxiety, tension, and stress. They are inexorably influenced by our attitudes, opinions, and expressions as they learn a great deal about themselves by watching, listening and absorbing all the subtle messages left behind in conversations to be had both in public and in private. They definitely do not wish to see us devastated by their disease (even if we are) and need most of all to be comforted, supported and understood.
So, when a parent unintentionally acts out his or her intense sadness, despair and anxiety in front of their children, the child is sure to take it all in, every bit of it. If our children receive messages confirming that their own situation is hopeless and the future bleak, he or she will surely feel out of control and helpless in the face of upcoming and ongoing adversity. However, if our kids are met with reassurance and optimism, they will be more likely to cope adequately, if not conquer the intermittent hurdles that are bound to appear throughout their lives. So, the quicker we as parents learn to “deal effectively” with the challenges presented by CMT, the quicker our children will build the necessary coping skills and resilience to live well despite this disease.
Let me qualify the expression “dealing effectively with CMT” as an extremely subjective experience, which takes on a different meaning for each and every one of us. Coming to terms with your child’s progressive disease and limitations takes a lot of time and energy, and as you already know, this does not happen overnight, if ever at all.
There are still moments when I am angry at this disease and obstinately think of Yohan’s CMT to be the ultimate definition of unfair lots in life, followed by a pathetic, “Why me?”, “Why him?”, “Why us?” I usually manage to calm down by focusing on what he can do, by living in the present moment and by appreciating the gifts of today. I also fervently practice replacing my negative and catastrophic thoughts with a more positive and realistic perspective which encompasses a broader, less self-centered approach to challenging situations.
The brutal reality is that I cannot control his disease or make it go away. However, we as parents are far from powerless and impotent. On the contrary, by sharing an unwavering hope for the future, role modeling coping mechanisms such as humor, optimism, faith while remaining connected to others for support, we are fostering resiliency and courage in our children, traits on which they will rely heavily today, tomorrow and the days to come.
Let me reiterate that as parents, we have the capacity to guide and support our children, despite the absence of that darn manual. There are always silver linings to all black clouds, you may just have to look for them. Hurdles and stumbling blocks exist to a greater or lesser extent in everyone’s life and many times, these challenges will bring families closer together or even offer a deeper, more meaningful purpose to life itself. Whatever afflicts us or our loved ones and no matter how severely, life is truly what we make of it. By planting the seeds of hope, confidence, and self-assurance, we are offering our children the right to a bright and fruitful future.
Whether it be CMT or some other uninvited disease, our children will have acquired the tools with which to triumph over whatever may befall them, because YOU, as parents, have given them the means. No one ever said that a parenting is an easy endeavor, but your hard work, time and patience is and will make a marked difference in the minds and lives of your children and the generations to come. Manual or no manual, your kids will be forever grateful, which I deem the best award a parent could ever receive.
Everyone gets down from time to time. When I am not in a good place, I try to think about something positive and uplifting. Sometimes, well okay, often, my mind brings me to unusual places, which make me laugh. Let me share 9 of my thoughts with you. Do any resonate?
You are all winners. I often find myself saying, ” I never win anything.” Then, I thought about this statistic: According to scientists, it is estimated that we have a 1 in 400 trillion chance of being born. 1 in 400,000,000,000! So, let’s say that there are currently about 7.5 billion people living on the earth right now. Let’s create 553 planet earths, each with 7.5 billion people. Now, you have to randomly choose just 1 person from any of the 553 planets. That person is you! That’s how incredibly lucky you are to be alive today. Crazy, right? We are all winners in the lottery of life.
Freedom rocks. There is so much beauty in the world and most of us have the ability to enjoy the air, sky, animals, friends, etc. I often think of those in prison, in solitary confinement or people who live in countries where freedom is severely restricted. Take a minute to take in and appreciate the tiniest of detail in your surroundings. Then celebrate your freedom by dancing, throwing your arms up, kissing a loved one. Why? Because you can.
Positivity. The way you interpret life events will definitely influence your feelings because thoughts create emotion. As master of your thoughts, you can put a positive spin on whatever happens to you, which will improve how you feel on a regular basis. And, if you end up in a slump, remember that you will not ALWAYS be in that same exact frame of mind. Laughter, joy, and happiness are not far away because feelings are temporary and fleeting. The way you feel will inevitably change.
I’m a modern girl. I am so happy I live in modern times, and not in the Middle Ages. Life does not look so fun back then. Serfs under the feudal system worked long and hard, doing back-breaking work all day long. Women spent their days spinning wool and making clothes (seriously, can you see me successfully making clothes on a spindle all day? They’d throw me to the pigs). Only 50% of the people lived until 35, which is the average life expectancy of the time. There was no electricity and families lived in one room huts where 1/3 of the space was fenced off for the animals. The hearth in the middle of the room gave off heat, but the air was always smoke-filled. You get the idea.
Cave Girl? No thanks! I’m also glad I was not born a cave girl. With my horrible vision, I would have been TOAST very early on. By the time I was in 2nd grade, my teacher figured out I was very nearsighted. Today, I am considered legally blind without correction. So when I play out my pre-historic times life, I get this scenario, “That pile of leaves looks fun! One, two, three-JUMP!” Then, in midair, I freeze, “Oh snap! The pile of leaves just made a growling noise that sounds just like a sabretooth cat. Good-bye cruel world.”
The internet is amazing! Information 24/7 at your fingertips. And Skype helps connect to people far away, in the US and way beyond. Today, it’s so much easier to research a topic from home instead of going to the library, using the Dewey Decimal system to find a book on a topic of interest.Now, video call a friend or a relative….just make sure you are wearing clothes to be seen in, at least from the waist up!
Changing your first name is totally legal. Seriously, there are some parents who did not think straight when naming their child. Here are a few very unfortunate names I’ve found while browsing the awesome internet:
Preserved Fish (Thanks, Shirley!)
And, there are many, many more horrible names out there. Many of these names are found on prison warrants for arrest. Well, what did you think would happen when giving your kids such embarrassing monikers?
Evolution is Cool For example, giants do not exist. Bare with me on this one. I always wonder how many ants I’ve unknowingly killed. To an ant, I am a huge monster, with big, murderous feet. I am so thankful I am not a tiny ant, and even more grateful that giants exist only in folklore. Can you imagine if we had to be worried about being crushed by giants roaming the earth? That would totally suck. And on that same note, I must confess that I am happy the dinosaurs are extinct. I just could not deal with knowing that at any time, I might come across an enormously fast lizard with little tiny hands reaching out to devour me for lunch.
CMT Sucks! (Joyce Steinkamp, thanks for the lollipop idea!)CMT stands for Charcot-Marie-Tooth disease-a progressive disease of he the peripheral nerves. Know if you have CMT, there is much more information, research, progress and awareness of this very common, but rare disease than ever before in history. And our researchers are working day and night to provide treatments to stop CMT. Bottom line – hope is real. But, believing without acting will not get us over the goal line. So, if you really want to feel good about yourself, get involved in a charitable cause like the CMTA by volunteering, donating, publicizing, joining igive.com or amazonsmile.com (choose CMTA as your charity of choice). Be part of the solution – cmtausa.org
Dedicated to all my friends who have a love/hate relationship with shoes.
“I love those shoes….OMG – they are sooooocute!” enthusiastically commented an unknown, young, attractive, athletically built woman. I looked around, certain that she was addressing someone behind me or outside my range of vision. Mouth hanging open, I stood stunned, realizing she was referring to my shoes, my size 12 purple and aqua blue Solomon running shoes. Managing to spit out a “Thanks!” her casual compliment rendered me speechless for all of about 5 minutes (which seemed like an eternity…..to me).
Above: The Complimented Shoes
The last time someone actually told me they liked my shoes was back in September of 1967. I was 5 and my mom had just bought me a pair of black, shiny patent leather shoes. The compliments I received! Overjoyed with my new shoes I ran, jumped, danced and then, never fail, I slipped on our hardwood floors, landing head first into the electric radiator, at the base of the wall. As blood gushed from the gash on my forehead, a cloth was applied to the wound where it stayed until we reached the ER. The stitches left a small scar above my left eyebrow, a foreboding symbol of future foot-related misery.
Above: Me, Age 5, Patent Leather Shoes
Nevertheless, I had not yet received the memo about imminent foot woes, so when my mom had to order new and very expensive shoes and winter boots from a shop in Montreal because my instep was so high, I thought that I was really something special. Although I hadn’t a clue as to what a high instep actually was, I didn’t care. I felt like a princess who needed the best of what money could buy, and from abroad, to boot (a 2-hour drive from my hometown of Burlington, VT). “I could get used to a life of royalty-Queen Elizabeth,” I imagined, my illusions of grandeur already a problem at such a young age. The thrill of ordering our butler around, “Andrew, Caviar, please! “or “I’ll wear the dazzling rubies this evening, Alfred! Snap, snap…I haven’t got all day!”
As I grew taller, my feet inevitably grew longer. By 8th grade, I was at least 5’7’ and my feet already demanded a size 10 shoe. Long-limbed and gawky, I looked like a baby flamingo and walked like a newborn giraffe learning to take its first steps. Between the giraffe and the flamingo, I must have looked a lot like a fliraffe.
Above: Baby Flamingo
Above: Baby Giraffe
Above: Fliraffe (a giraffe with baby flamingo feet)
If my parents had named me Grace, I would have been a laughing stock! It was bad enough with older brothers who had their own nicknames for me: clumsy, klutz, horse, big foot, clod, butterfingers, spazz, etc. I was always bumping into something and spent a lot of time on the ground, either cleaning up something I had spilled or nursing wounded knees.
If you have CMT, you may be able to relate to my story and have a few of your own. Does this sound familiar? I fall over air, get caught up in my own feet, trip up stairs, run into furniture and constantly drop things. Here are just a few concrete examples which come to mind: I dropped my cell in public toilets, twice, got my bike tire caught in the rails of a tram, and just simply fell over onto my side in the middle of a busy plaza, tripped on nothing and everything, sprained ankles, broken toes and sported many, many bruises. And this is just the tip of the iceberg, as the list is way too long and the catastrophes, too many to count.
Many of my friends in high school and college wore high heeled shoes for events. Not me. At 5’9’’ I was already taller than the majority of other students, especially the guys. Secondly, a size 10 high heeled shoe was impossible to find and third, I would have broken my neck. And have you ever found a sample size 6 or 7 shoe at the store, and when they brought out the size 10 or 11, it looked nothing at all like the size 7 you had already fallen in love with?
Above: The shoes I wanted (floor model,size 7)
Above: The shoes they brought out (size 12)
When I lived in France, the saleswoman wore a look of shock and disgust when I gave her my shoe size. As if being forced to wait on the Hunchback of Notre Dame, she nervously whimpered, “Madame, s’il vous plaît, look in zee secshun for zee man,” and she pointed in the direction of the men’s shoe department. How humiliating.
By adding padded and ultra cushy orthotics, my shoe size increased by 1 or 2 sizes!! On my body, an 11 or 12 shoe is not feminine. It just isn’t. I walk more like Herman Munster than a tall woman with long legs and big feet.
Above: My body and feet
So when my new best friend complimented me on my “cute” shoes, I decided to take the compliment and wear it with pride. And, honestly, I am just grateful to be able to walk. Some are not so lucky. So, I say screw femininity. The older I get, the less I care about what people think, especially if it is negative. Now give me positive commentary, and that my friends, is a different ball of wax.
The pizza had just arrived. Before I could take my first bite, the subject of my husband’s company cocktail party surfaces. “Thanks, but no thanks. I don’t want to go,” I say with steadfast determination. “I’ve already made sure that chairs will be available,” he counters, attempting to make the event seem easy, cozy, attractive even. Then, as he points at me with the tip of his piping hot slice of pepperoni pizza, he gets all serious and a little pouty. “Look, I run the company. It would mean a lot to me if you came. My staff and colleagues are looking forward to meeting you. ” On the inside, I roll my eyes, feeling a little irritated that some of the melted cheese from the pizza was still stuck to his face. If I’m not there, who will make sure he wipes off his chin, which was now dripping with grease and mozzarella?
Resigned, and feeling slightly manipulated, I agree to join in on the merriment.
Gilles’ mom once told me that sometimes you just have to do things you don’t want to do, like get a root canal, euthanize your pet lizard or unplug the toilet. And, going to this cocktail party was right up there in the category of things to avoid.
At cocktail parties, everyone usually stands around with a drink in hand, eating hors-d’oeuvres and chatting. I’m all good with the chatting and eating part. I also enjoy meeting new people. It’s the standing around that is the most difficult. When it hurts to stand for more than 5 minutes because of nerve pain in your feet, it is hard to feel relaxed at these events.
After no more than 5 minutes after our grand entrance, my anxiety rises and I desperately scan the room for a chair or something to lean on. Rocking back and forth, relieving pressure first on the right foot, then on the left, the right, the left, I wondering if the other guests are noticing my discomfort. So as to not look too silly, I even start bopping my head and swinging my hips to the beat of the music, as if I were lightly dancing and really into the melody. (This probably made me stand out that much more, but at the time, it seemed reasonable.)
10 minutes is my max tolerance before I excuse myself from whatever superficial conversation I am engaged in and plop down right into the arms of my new best friend- the chair. Thank God – the pressure is off of my aching soles. I wave to Gilles, just to show him where I’ve landed. Colleagues in tow, Gilles slowly makes his way toward me and over the noise, the music, the laughter, I overhear, “…… foot problems……can’t stand too long…..pain.” One of his cohorts, wearing a glittery cocktail dress and 10-inch heels chimes in, trying to relate to my situation, “Oh, my feet are killing me too! Ouch! I just have to slip these off….what women wouldn’t do to look their best! Staring down at my bulky size 10 (mens) hiking shoes, I could not take it anymore. “OMG, can we leave now?” I pleaded to deaf ears. “I just can’t relate to these people and they obviously can’t relate to me.” But, my protests were drowned by the noises of background laughter, glasses clinking and live, blasting music.
Loving the comfort of my chair, people politely stop by to say hi, but no one really wants to sit with me. Why? Because it is a COCKTAIL PARTY and people STAND at cocktail parties. As a seated attendee, engaging in casual or meaningful conversation with a standing guest just translates into craning of the neck in an upward position for an extended amount of time. The result? A trip to the chiropractor’s the following day. So, to bypass unnecessary appointments and self -afflicted neck pain, I set my gaze forward, looking straight in front of me. From this vantage point, the scenery is mostly just crotches and belt buckles. That’s exactly what I wrote – crotches and belt buckles!! Yep. Can you say, awkward? What’s worse, if the room is crowded, intimacy is quickly forgotten with up-close views of back pockets and butts. Feeling pretty helpless, I just end up praying that no one passes gas too close to my face. Escape would be difficult.
I usually get a few stragglers who spend some time talking about how mean Gilles is as a boss (just kidding), but mostly I pretend to be really busy on my phone, answering urgent messages, texting and making note of some vital, earth-shattering information.
I’m usually overjoyed when it is time to leave. Another holiday party over. Check! In all honesty, I think I would have rather unplugged the toilet.
There is no moral to this story, but here are a few thoughts:
If you want to see crotches and belt buckles up close and personal, attend a cocktail party. Make sure to sit for the entire duration of the party so you’ll be able to relate to my experiences.
Feign sickness and just don’t go to standing only events. Stay home, watch a movie and cuddle with your cat or dog. It’s much more relaxing and the therapeutic value is undeniable.
Ever had to use a wheelchair to get from here to there? Now, I’m not talking about temporarily using a hospital wheelchair to nurse a broken toe or to be wheeled out of the maternity ward after having a baby. I’m talking about relying on a wheelchair to get around for an indefinite amount of time because walking is too painful, extremely hard or simply not possible.
When I was pregnant with Yohan, I developed plantar fasciitis. It was 1993 and we were living in France at the time. My french PT chose to implement jackhammer “massage” therapy on the bare bottoms of both feet to loosen up the tightened fascia.
He turned on the pummeling device and went to work for what seemed forever on the right foot: GRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK (OW, OW, OW), and then the left: GRRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK (Double OW, OW, OW). It really hurt but I figured, “No Pain, No Gain” right?
Long story short, from that day forward, 24 years ago, nothing will ever be the same. My life had forever changed. My brain translated the pulsating vibrations as a threat, leaving the soles of my feet to ache, burn, freeze, stab, and just plain hurt. I no longer count the years, but the memory and the pain are forever etched in my feet and in my heart.
3 years later, Yohan, Gilles and I moved to California and my feet were still killing me. I tried everything, and I mean everything to alleviate the constant discomfort: acupuncture, medication, nerve blocks, psychotherapy, Tens, myofascial release, creams, gels, patches. Nothing worked, so after a lengthy and heated internal debate (the reality of using a wheelchair scared me), I purchased a custom-built wheelchair.
Here are just a few highlights from the first year or two:
“Oh dear,” laments an eighty-something-year-old in the grocery store. As I look up, she was peering down at me, pursing her lips and shaking her head slowly from side to side. “You are just too young to be in that chair.” Um. No duh, but I am, for now, and by the way, why am I even talking to you?
“Hey, this looks FUN!” yells a “friend” as he unexpectedly grabs the push handles in the back of the chair and starts to zoom me down the street, swiveling erratically to the right and to the left. He thought he was brightening my day, adding a little zest to my boring existence. Careening down the street, I was furious with my helplessness, vulnerability, and especially Monsieur Rémy. The guy who was pushing me around? We are no longer friends. He’s dead to me.
“Well, Heeellooooo Sunshine!” singsongs a salesperson at Macy’s. How are you doing today? she asks, enunciating every syllable with exaggerated grimaces which made me wonder if she thought I was deaf and had to read lips to communicate. Then she simply turned to my sister and asked if there was anything in particular “she” needed, referring to me. Oh, I get it, she assumed that I was mentally and physically disabled. You have got to be kidding me. Her strategy: avoid all eye contact with the sitter and go with the stander, the one “in control” and who looks the most normal. Normal must be in the eye of the beholder because on that particular day, my sister, Kathy, was dress as a blueberry…really. She was drumming up business for her summer business, Island Blueberries.
On another note, if you don’t get killed, some of the following situations could be translated as funny…..years after the fact.
This is the real Kathy.
Kathy, bless her heart, always volunteered to push me around downtown Burlington when I visited in the summer. Going into the mall, Kathy grunted several times in an effort to get the front wheels of the chair over the seemingly extra tall threshold (bottom of door frame). She pushed once (Hey, that was my back!…don’t use your knee!), she pushed twice and the third time….SCORE! The wheelchair unexpectedly jerked over the doorframe with such force that I fell forward, right out of the wheelchair and onto the cold, hard floor!
That very afternoon, I Googled: manual wheelchairs + seatbelts+ overly enthusiastic sister.
On a different day, we encountered yet another obstacle. The wheelchair ramp to the store in question was short and steep. It looked something like this:
Going forward was out of the question, so Kathy, with all her might, pulled me into the store backward. Gravity was pulling me forward (I had not yet received that damn seatbelt). It felt like I was going to tumble out of that chair, and roll into the street. She got me to the top of the ramp and wouldn’t you know it…the bottom of the doorframe was again, extra high (What is it about buildings in VT?) I pleaded with her to just leave…it was not worth the trouble, but my sister does not back down when facing a challenge. And she rarely listens to me, so I held on tightly, trying to shift my weight backward. Then I heard 2 employees scream, “WE’VE GOT HER!” and before I could say, “this is really embarrassing“, one woman helped my sister pull, when the other suddenly appeared in front of me, and started pushing the arm rests to get the chair into the building. With three people pushing and/or pulling, we made it into the store, but I had had it, I was done shopping for the day.
Today, we laugh when remembering those mortifying incidences, but to those who experience similar or worse situations daily, it’s really frustrating. Here are just a couple of tips when interacting with a person with a disability:
Respect Personal Space-many use mobility aids, so don’t touch, use, lean on or move the person’s wheelchair, walker, cane, etc
6 months later, he is still crutching around the house. Every time Yohan attempts to walk on the surgically repaired foot, he develops open sores and blisters on the ball of his foot. We were hopeful that the custom-made orthotic would shift his weight to a better, more functional position. It does, but his fragile skin just plain cracks under pressure.
Infection is also an on-going concern. With little sensation on the bottom of his feet, the seepage from the sore was the only indication something was amiss. Now, to avert danger, he inspects his soles day and night with a telescoping mirror.
“You need another surgery on that same foot?” I repeated incredulously as if I had not heard him right the first time. Sounding deflated, he explained, “Yeah… Dr. Pfeffer wants to take the pressure off the ball my foot, by surgically lifting the bone. He also wants to straighten my toes, and I’m not too sure about that. I’m going to think about it. Anyway, all in all, it’s a 6-8 week recovery period.”
Remaining calm and collected on the outside, I steadily asked a few more questions, showed my support and told Yohan we would do whatever it takes to get him walking again. But inside, I’m all like, WTF? Another surgery? You gotta’ be kidding me. My friend, Bethany had her feet surgically repaired and now she is walking all over the place. In fact, she can walk further and longer than most people I know. And Jeana had surgeries…ONCE on each foot, and now her feet look great!She has funky pinky toes, but hey, she can dance, walk, and exercise.
As I thought about this new piece of information, I suddenly remembered all the community members on our Facebook group who had mentioned having multiple surgeries – 10, 15, 20 operations over the years. I had put these people in the category of anomalies. They must have had really bad surgeons or maybe the procedures were done a long time ago when surgeons did not know CMT and really hadn’t a clue as to what they were doing. Today, surely, with advanced technology and techniques, a second surgery on the same foot within a 6-month time frame is probably unheard of.
Many DO have multiple surgeries to correct CMT feet. It may not be news to you, but it just hit me that I must be completely delusional.
As I count, I realize that it is more common to require several procedures on each foot, and then some over the years, than to have one surgery and be done with it. In fact, just last week I ran into a woman at the local fruit stand who commented on the Shark-O-Marie-Tooth bumper sticker on my car. “Oh, I see you have that too,” she muttered as she whisked by me. “What do I have?” I asked a bit confused. While feeling the ripeness of a cantaloupe, she offered, “ That thing, you know- Charcot-Marie-Tooth. My husband has that too.” She moved on to the kiwi, popping bite-sized samples into her mouth. “He’s in his 70’s now and he’s had over 23 surgeries on his feet over the years.”
I almost choked on the chunk of apple that lodged itself in my throat. Funny how reality changes once you open yourself up to the world. Haven’t you ever heard a new word, idea or process, and then you hear about it again and again, wherever you look. This phenomenon actually has a name: The Baader-Meinhof Phenomenon. Never heard of it? You will. Now that you are in the know, your unconscious will be scanning the environment looking for this word and you will be surprised at how often it will crop up from this day forth. This phenomenon even has its own Facebook page: https://www.facebook.com/TheBaaderMeinhofPhenomenon
Where was I? Ah, yes…back to Yohan.
The second surgery on the same foot is not scheduled yet, but come January 3rd, a call to Dr. Pfeffer’s surgery nurse will be made. Welcome 2017…….it can only get better, right?
PS: It’s not all doom and gloom. Yohan is finally using the knee scooter we’ve had since day 1. He wheels himself around the house with ease, running into people, objects, walls. He’s become quite adept at steering and getting around. Wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!
Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”. If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link:
Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”. If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link: http://www.cmtausa.org/101tips
As for Yohan, he’s more or less become a permanent fixture in our dining room. Every once in a while I’ll stroll on by, dust him off, rearrange the furniture and water the plants. In front of his computer screen, he keeps himself busy with grad school applications, gaming, writing projects, gaming, reading, and did I mention gaming? He’d be perfect at that mannequin challenge which has gone viral over the past month or better yet, he might be able to break the Guinness World Record for competitive sitting (72 hours).
Looking for Yohan? Look no Further!
The only reason I know he’s still living and breathing is that nasty cough he’s had for the past 30+ days. It almost feels like a game of psychological warfare where he’s trying to make me crack, and all truth be told, he’s succeeded. I’m worn down, my will is broken and I’m more than ready to divulge any and all information I might harbor. Let the interrogation begin!
The last time I checked in, Yohan had been cleared to walk and start PT. His progress has been molasses slow since then. Why? Pressure sores. After a week or two, these sores heal, and as soon as he’s given the green light to resume walking, they break open again. It’s so frustrating!! After surgery and casting, all his hard-earned calluses dropped away, leaving fresh, pink, baby skin. Problem is – Yohan is 23 years old and he’s totally over the baby skin stage. Like, WAY over.
He’s had a shoe insert made to relieve the force on the pressure spots. And we’ve been back and forth to San Francisco 3 times in the last month to have the orthotic modified, but we are not there yet. Just this morning, that stupid sore reopened, which means one thing: Stay off the foot and get back on crutches. UGGGGGHHHHH.
Yohan will be seeing Dr. Pfeffer next week for a consultation and we’ll go from there. If we can’t take the pressure off that one spot, he may need another procedure on that foot. No way are we delving into the second foot surgery until he is 95% ambulatory with the reconstructed one. We do not know how long that will take and grad school applications have been submitted for a fall 2017 admission.
Yohan does not like surprises. He yearns for certainty and security. We all do. How do you plan your life when you can’t really plan your life? Message from the universe: Shit happens and you just have to go with the flow. You make the best of what you’re given and deal. It’s definitely not optimal, but what choice do you have? CMT sucks.
Question: Dealt with foot sores? Share how you managed them!
That hairy tarantula crawling around the ranch the other morning would have, by definition, freaked out anyone who suffers from has arachnophobia, a fear of spiders. While it was basking in the sun behind a tire’s worn treads, I so wanted to put it in my palm and pet it, but before I knew it, someone had scooped it up into a bucket and displaced it into a secluded grassy area, away from me and the lethal parking lot.
And come to think of it, one of the last times I impulsively picked up a feral, furry animal, it bit me. Thankfully, that scraggly rat did not have rabies, or I would have been whisked away to the nearest hospital receiving treatment for rabies which, at the time, included 21 injections, with very long needles, into my 10-year-old abdomen.
I am not afraid of 8-legged creatures, but after reading yesterday’s news, I just might reconsider my position. “Invisible Bugs In Kansas City Are Jumping Out of Trees to Bite People, read the headline of the Wall Street Journal. Apparently, it is oak tree itch mite season in Kansas City, MO and these microscopic arachnids are pouring out of trees and landing on people, making their lives an itchy living hell. Arachnophobes-beware! Don’t hang out under oak trees in Missouri.
Oak Tree Mite
The next news story, Creepy Clown Craze Sweeps the Globe, peaked my interest. I do not suffer from a fear of clowns (coulrophobia)…yet, but if I keep reading the news, I may have to ask for a lifetime prescription for Valium.
While we are on the subject of phobias, here is how I addressed my new-found support group of phobic cohorts: “Hey everyone. My name is Elizabeth and I’m afraid of inclines.” Inclines? Yes, inclines, also referred to as slopes, ramps, hills, gradients, or ascents. “Welcome, Elizabeth,” they all chanted in a monotone kind of way.
There is a word for my malady. It’s called bathmophobia. For over a decade, this phobia has severely limited my ability to function well in this world. I avoid walking on even the gentlest of slopes. I’ll walk backward up a hill, but no way will I attempt to walk forwards. Sounds weird, right? Well, if you’ve ever seen me walking backward up the jetway to the airport terminal, it looks even weirder. People stare, make jokes, avoid eye contact and get irritated at my slowness. Generally, I ignore people by pretending to be pulling a very heavy, wheeled carry-on, or feign looking for the rest of my family who has already escaped to the terminal so as not to be associated with me.
20 years of chronic foot pain can mess you up a bit. Over the years my brain has learned to avoid potentially noxious stimulus. Protecting the area of the body that hurts is a normal response, one which is deleterious if left to linger for an extended amount of time. Muscles, tendons, and fascia tighten, and rigidity sets in. My gait has changed. There is little heel to toe motion. My calves are tight. I’ve been walking as if I had big blocks of ice on my already very large, size 11 feet-bang, bang, bang. You can hear me coming for miles away. And you wonder why you never see me in a dress!
Up until now, I’ve been half-heartedly facing my bathmophobia. Like everything else in my life, if the consequences are not dire, the task or challenge will most likely remain at the bottom of my never-ending list. Here’s the thing – Gilles and I own horses who have to move to a new pasture soon, a pasture where I will be faced with a 6 percent grade incline. Oh my……
A little bit about Athos: He is more canine than equine. Initially, Athos belonged to Yohan who discontinued riding because of CMT-related fatigue and pain. Then, I started looking after him and he quickly became my primary reason to get up early in the morning to walk and exercise. Athos, lacking the 2 inches necessary to earn the title of horse, is technically a pony (shhhhh, don’t tell him), but he thinks he’s a Clydesdale, or maybe a Great Dane, depending on the day. I ride Athos too, but standing 5’9” tall, with daddy longlegs limbs, my ice blocks nearly touch the ground when I get on his back. I can almost break with my frozen heels…..no joke!
He loves kids, and kids love him. He is particularly fond of my 9-year-old “niece”, Bella, and vice versa.
Athos loves performing. In fact, he’s clicker trained and knows a lot of tricks, from nodding his head, “Yes” to pushing a ball around the arena to picking up sticks and retrieving. Athos will do almost anything for a carrot!
Watch the video below where Bella and Athos are playing!
So, I need to get moving in the upward direction. I have my mind set on conquering the 6% grade hill below (it’s steeper than it looks, folks). It’s become my Everest, my K2, my Annapurna. If I can do this, I can do almost anything I put my mind to. I’ll keep you posted.
PS: And in the meantime, stay away from 8-legged creatures, clowns, and oak trees!
His toes are curled, especially the pinky toe which begs attention by standing just that much higher to make wearing any shoe a challenge. His crescent arches make walking a balancing act. His calves are as tight as the string of a bow and his ankles are turning out as the supporting tendons lose their grip. Thick, but hard earned callouses are just a bonus for winning the CMT lottery.
CMT is usually passed down from one generation to the next. It is inherited. Yet, neither my husband nor I have it. Yohan is the first person in our families to have CMT. His CMT is caused by a spontaneous genetic mutation. A mutation that can be passed on to his children, his children’s children, and so on and so forth.
Yohan will have reconstructive foot surgery tomorrow morning at 7:00 am, a surgery which has been planned for a year and scheduled for 3 months.
A few weeks ago, in a moment of sheer fear and anxiety, I clumsily suggested that we might want to get a second opinion on the necessity of surgery, a surgery that was only 3 weeks away.
In shocked disbelief, Yohan blurted out, “Are you expletive kidding me? After choosing to put my life on hold for a year after graduation? After all the in-depth discussions and conversations we’ve had? No way. I’m resolute in my decision. Now let’s get this over with and put it behind us.”
Enough said. My worry asked the question and the voice of reason responded: the surgery is a go. The reality is that Yohan can no longer run, walk with confidence or stand without pain. It’s time. It’s time for an upgrade that only the hands and skills of a competent orthopedic surgeon like Dr. Pfeffer can offer. After tomorrow’s surgery and a 6-month healing process, Yohan’s calves will relax, his pinky toe will align, his arch will flatten and his tendons will be strengthened. Tomorrow brings the promise of less pain and more stability.
Any surgery is risky. And the recovery for this particular surgery is long and tedious. But the possibilities of a new tomorrow are endless. So, when anxiety rears its ugly head, I am guided by Yohan’s words: Plan for tomorrow, then live in the now. Our brightest future lies in the sound decisions of today.