I’d much rather be dressed up as a clown, complete with the red nose, oversized shoes, full face paint, and handing out balloons to kids all day than suffer through the agony of attending an upscale cocktail party. And before you ask, I’m not grappling with social anxiety, nor am I living like a recluse. In fact, I’m quite the extrovert and I thrive at parties. So, what’s the catch, you may wonder? It’s an unexpected culprit – my feet. For the past three decades, they’ve been my relentless tormentors, transforming every step into a torturous journey over hot coals. I even have a wheelchair tucked away in my shed, once used for museum outings or standing-room-only events. Today, it’s in our shed, gathering cobwebs. I’ve simply resorted to dodging situations that demand prolonged standing or involve terrain rougher than a football field. That, my friends, is a whole lot of avoidance.
The Trigger
So, when Executive Life Coach, Arda Ozdemir, approached me about a “LIVE” session showcasing his POWER method, I eagerly accepted the challenge. When he asked about a trigger, a situation causing an emotional reaction, I went straight to the embarrassment I experience when I feel different and out of place, like at fancy cocktail parties where standing for long periods is obligatory. Let’s just say my tolerance for standing is about 10 minutes before my feet start sending SOS signals demanding respite. Between you and me, my size 11 men’s extra-wide athletic shoes are far from a fashion statement at swanky soirees. I feel judged from the moment I shlump in wearing orthopedic Velcro sneakers until I blissfully waltz out the door.
Bar Tables. No Chairs??
I hoped my coaching session would provide some laugh-out-loud revelations on how to comfortably ignore my invisible disability, without attracting undue attention. It’s not about shyness; it’s about how I grapple with formal situations where people are numerous and chairs are as scarce as water in the desert. When I see a room full of tall bar tables, I want to crumble like a cookie in a messy heap on the floor. What’s the right amusing thing to say to tactfully draw attention to my plight? How do I blend in and distract from my unfashionable footwear? Should I wear clown shoes and pretend I just came from entertaining at a kid’s party? These thoughts swirl in my mind between winces of foot pain. And trust me, it’s not just my wild imagination at play – I have X-rays and doctor’s notes to prove it!
You May Be Crazy!
Am I Crazy?
Over the past 30 years, I’ve consulted with all types of doctors, who, at a loss for words, subtly hint that my pain is all in my head, suggesting I was a hypochondriac, a malingerer. While I do appreciate the limelight, it’s the positive kind I prefer – not the type where people stare at your unfashionable shoes and wonder why you are sitting on the floor. When the medical establishment can’t give a tangible diagnosis, it’s akin to having an imaginary unicorn horn protruding from your forehead. You schedule an appointment with a surgeon, who inspects your noggin with a magnifying glass and insists there’s nothing amiss. Meanwhile, you’re convinced you’re sporting a rhino-sized bone growth. Next thing you know, they’re calling in interns to gawk and reaching for straitjackets, convinced you need psychiatric help for your delusion. When authorities question your sanity, self-doubt, and confusion set in. Maybe I am losing my marbles, I pondered. It’s a profoundly isolating experience that leads to questioning one’s own mental health.
Seismic Shift in 20 Minutes In that 20-minute coaching event with Arda, my perspective underwent a seismic shift where I was able to see the whole situation from a different vantage point. This wasn’t just about feeling different; it was about the perception of weakness and the fear of not being loved for who I am inside – a person with stylin’ orthopedic shoes! As we delved deeper into my psyche, I unearthed childhood memories that were dictating my behaviors and reactions. I was constantly operating under the constraints of a limiting life script!
As we unpacked this personal trauma and released its grip on my heart, my cloudy view of the past became crystal clear. I thought about my son who was born with a progressive nerve disease. I never once perceived him as weak or fragile. I believed he could conquer the world; I wanted him to know he was capable, invincible, and deeply cherished. Throughout his childhood, my message was clear: go out there and embrace your talents because you are worthy, skilled, and unbeatable. And that’s exactly how he lives his life – unshackled and in the moment.
The Epiphany
During our session, I experienced a remarkable epiphany. I realized I had never fully embraced the philosophy of “you can achieve anything you set your mind to” when it came to myself. I had chosen to ignore the podiatric elephant in the room by pretending to fit a singular vision of “normal.” But the truth is, there’s no universal definition of normal – normal is relative, unique to each individual like a fingerprint. Everyone has quirks that make them distinctive. So rather than masking my pain, I could acknowledge it as an intrinsic part of my identity.
Why was I willing to believe this empowering message wholeheartedly for others but not myself? I had loathed standing out in any way, trying to keep my pesky foot problems under wraps. Year after year, I tiptoed cautiously through life, keeping up an act of perfect health, sidestepping events that put my foot troubles front and center. But most likely, people wouldn’t have judged me as harshly as I imagined. Most would probably respond with empathy and understanding.
Solutions
So how can I reshape my future social butterfly wings? When faced with a chairless situation, Arda and I pondered alternative approaches. Instead of desperately seeking a hidden bench or chair to sink into while blinking back tears, I could try a different strategy. Why not use those precious 10 minutes of standing to initiate a lively conversation about the joys of orthopedic shoes and steer us toward seating? Or better yet, make a preemptive call to the event venue to ensure seating options for those of us with limited standing endurance. Who would decline such a reasonable request? And even if they did, who cares? I’m sure most venues come with chairs and I’d easily find someone else eager to engage in a seated tête-à-tête.
Conclusion
In just 20 minutes, Arda guided me through the POWER process, and it revolutionized my perspective on my foot fiasco. I realized you don’t need to remain trapped in old patterns and stories. With an open mind and a willingness to change habitual behaviors, there are always avenues to bring light and joy into your life. It’s not about the shoes…….it’s all about feeling safe, self-confident, and aware.
Me, Gilles, Yohan, and Chris: One Family, One Purpose, One Mission
Our Journey
Our journey with the Charcot-Marie-Tooth Association (CMTA) began in 2001, soon after my 7-year-old son, Yohan, was diagnosed with CMT 1A. Known as a heritable peripheral neuropathy, CMT is a genetic disease usually passed down from generation to generation. Still, no one in our past or present families showed symptoms or had been diagnosed with progressive neuromuscular disease. We scratched our heads for months and wondered why his hands were weak, making writing, zipping, and buttoning difficult; why couldn’t he climb the monkey bars, ride a bike or fit into penny loafers? His instep was so high, and his toes started to curl due to an unusually high instep. After much speculation and debate, Yohan’s physical therapist tested his knee reflexes, and after learning that he had none, we were sent to a pediatric neurologist.
The Diagnosis
After an initial visit and some testing, He announced Yohan had a rare disease with the words ‘shark’ and ‘tooth’ in it. At first, I thought he had said “Shark Tooth disease” (wait, what?), but later I saw the name written out – Charcot (Shahr-KOH)- -Marie-Tooth disease. Dr. Sum used terms like progressive, demyelination, spontaneous mutation, nerve damage, and muscle weakness. I was under the strongest impression he had made a mistake and had to have pulled the wrong chart. When the words ‘incurable’ and ‘degenerative’ came out of his mouth, I stopped listening; my mind became void of thought and memory. There were no treatments or cures for CMT, but the neurologist handed me a pamphlet from a non-profit organization in Glenolden, Pennsylvania, providing patient support and resources. “Seriously?” I thought. How will this small non-profit on the east coast with 3 ½ employees help me or my 7-year-old? It all seemed unreal and absurd at the time. Blindsided by the news, we all left the hospital dazed, confused, and in a state of lingering shock. After I had time to digest the repercussions of a CMT diagnosis, my reality shattered; I felt broken and lost. Here are my thoughts at that time:
A World Shattered in a Million Pieces
My world shattered into millions of pieces the day of diagnosis, and I never thought we’d be able to pick up all the scattered bits to rebuild our dreams, hopes, and 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 apparent 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 his 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 increasingly 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, nor did catering to his every need. In retrospect, I realized I was giving him permission to become 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 help from a therapist who counsels families on raising children with medical challenges. Intuitively, we knew what measures needed to be taken, but agreeing on and implementing change is hard, and we desperately needed someone to guide us. Slowly but surely, we stopped treating him as different (i.e., weaker, less capable) and let him experience the world on his terms. This was probably the hardest but most essential job I had as a parent of a child with a rare disease.
Scuba Diving as a family!
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 much trial and error, we agreed and worked as a family towards common goals. My husband started bringing Yohan on camping trips, scuba diving trips, desert excursions, and kayaking adventures, which gave him a sense of adventure, autonomy, and normalcy. 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. We all consciously lived in the NOW, not in the past or future, and cherished the present moment. It was obvious Yohan’s chances of becoming a high-ranking athlete were slim to none, but who cares? We had a golden opportunity to do things a little differently, creating a life full of enriching and rewarding experiences. Over the years, our motto has been, “We’ll Make it Happen.” We followed our dreams, lived in the moment, cultivated new experiences, and lived our best lives possible. We chose to take family trips (even if it meant pulling him from school) as a form of continued education – we visited Europe (Yohan was born in France, where we lived for the first three years of his life), Ecuador, and the Galapagos Islands, Tanzania, Bahamas etc.
Super Dad
My husband Gilles accompanied his high school class on their annual European adventures. Yohan also became an expert archer, scuba certified, a horse rider, a history buff, and an animal expert. (I was strict with TV and allowed him only to watch History Channel or Animal Planet. He thanks me today, but at the time, not so much,) With the help of his tutor, Rick, he worked around his learning differences and graduated from a first-class University – Pitzer College. Despite a 1 year pause for foot reconstruction surgery (which failed the first time, requiring a complete redo of the entire surgery, consisting of 15-18 separate procedures), Yohan soldiered on and went to Graduate School for Organizational Psychology at Claremont University. Today, he’s autonomous, enjoying his own apartment and working full-time at a start-up company in the field of HR, where he is experiencing a ton of success. He loves his job, his colleagues, and his work.
Teaching Kids Early on, I reached out to that non-profit organization, CMTA, with 3 ½ employees and decided to volunteer my time to CMTA, learn all I could about CMT, meet and work with others who lived with CMT, and build community. I started writing articles about Yohan and how CMT affected him and our family. I created a school-based program to teach kids about CMT in a fun, non-threatening way. The effects of this program helped Yohan’s peers put themselves in his shoes so they could empathize vs. sympathize with him. Yohan was bullied quite cruelly in 3rd and 4th grade due to his apparent differences. Still, once the kids understood the reality of CMT, they courageously put judgment aside, suppressing their taunts in favor of support, compassion, and collaboration.
20 years ago, the CMTA had a dozen loosely scattered support groups nationwide. I reached out to all the support group leaders and brought everyone together under the auspices of CMTA. I stepped up and started a branch in California myself to get the experience and resources needed to help everyone and anyone with CMT. The groups grew from 12 to 75 across the country in the blink of an eye. There is strength in numbers, and we all worked collaboratively to reach as many people as possible, find resources for people with CMT and their families, and get first-hand information from our lead clinicians about CMT.
After finding so many new people who wanted to get involved in growing CMTA, I got the green light to organize the first-ever Branch Leader Conference in Las Vegas, where our CMT researchers, physicians, and leaders from all over the country came together for educational seminars, bonding experiences and an overall sense of solidarity and mission to change the world for people living with CMT. At this first branch leader conference, I met Jeana Sweeney, who had CMT, and her young daughter, Rylee.
Jeana shared my ideals, passion, and determination, and I discovered early on that this woman had a natural gift for fundraising! Our friendship has spanned over 20 years, and together, we maximized our creative freedom, innate talents, and desire to change the world. We generated ideas, implemented projects and became movers and shakers of the CMTA community. Jeana and I put together and organized Patient and Family conferences all over the US, inviting CMT experts to speak to CMT patients and providing the necessary information and resources to live well with CMT. We loved our work, the people, the community. Jeana was hired by CMTA as Director of Community Services, and I was asked to join the CMTA’s Board of Directors.
One of our branch leaders had the idea for a CMT Awareness Week, so we implemented that movement, which gained a lot of traction. The following year, Jeana and I decided CMT Awareness Week didn’t have enough meat, so we created CMT Awareness Month to help better understand the issues affecting people with CMT. Today, we celebrate CMT Awareness Month in September to fundraise for a cure, dispel myths, educate the medical community on how to diagnose CMT, and spread the word, reaching out to friends or family members who are facing a CMT diagnosis. CMT Awareness Month has become a worldwide movement.
Hero Dad
My husband, Gilles, always supported my efforts on Yohan’s behalf but remained a silent partner, encouraging me to do my thing. When I joined CMTA, he worked as COO of Hewlett Packard, and his time was sparse. We created the Yohan CMT Fund to financially support the CMTA’s research efforts. Gilles is an experienced mountaineer, skier, and cyclist, so Yohan’s diagnosis was emotionally tough but not insurmountable. Gilles’ adventurous spirit and longing to create memories with his only son became boys-only camping weekends and kayaking trips. I am not a camper, more of a glamper, so I am happy Gilles took him for out-of-this-world outdoor experiences, but of course, my anxiety seemed to sneak up on me. Gilles let Yohan find his own safety limits and boundaries. He encouraged him to do activities I would have immediately shunned for fear of injury.
After one of these memorable weekend adventures, Yohan burst through the door, unusually excited to tell me all about their weekend. First of all, I learned an ocean wave had snuck up on them, drenching his only pair of extra wide shoes, which contained his custom-made orthotics. The issue was not with the water but how Gilles tried to dry them. Thankfully he removed the orthotics before leaning the shoes up against the sticks of their campfire. They retrieved the shoes the following day, but the soles had melted entirely off….ooooops! That’s nothing compared to the picture of Yohan walking dangerously over a fallen tree high above the ground over a creek bed. I freaked out. Yohan was smiling ear to ear, as was Gilles. “What’s so funny?” I yelled. “He could have broken all your bones or even died out there!” That’s when they told me how they manipulated the camera angle to make it look much more dangerous than it was. Do I believe them? It does not matter. Gilles let him be free, allowing him to just be a “normal” kid without the label of CMT hanging over his head.
To this day, I admire my husband’s flexibility and willingness to find activities Yohan could embrace and physically succeed at. I conclude with the statement that our lives were never boring!
Funcle (Fun Uncle) Chris and Yohan: A Forever Bond.
My Family
My family has always been super supportive of me, Yohan, and the CMTA. But no one on either my side or my husband’s side of the family had CMT, and it was extremely hard to relate to all the day-to-day challenges of having a rare disease. One day, my brother, Chris, and his family met up with me and Yohan in the Bahamas for vacation. Our two families stayed close and often met up in Vermont (where I was born and raised), California (where we live), or a neutral vacation spot to spend quality time together. One winter in VT, Chris looked downtrodden. Seeing a change in Yohan’s physical abilities, Chris reminisced, “We used to ski, snowboard, hike, and play racquetball, but those sports are no longer CMT-friendly. How can I continue to be part of his life and show my love for him?” He paused briefly before proposing, “How about if we did a cycling fundraiser in VT to support Yohan, others with CMT, and the CMTA’s Strategy to Accelerate Research (STAR) initiative? What do you think?” Without hesitation, I said, “Let’s do it! Of course! Let’s do it!”
100% Family Support: L to R – Rachel and George Ouellette, Kathleen Vandevord, Uncle Chris, Aund Mia, Cousin Warrne Ouellette, Yohan, Cousin Lila Ouellette, Grandma Bev, me, Nancy Appleton.
Cycle 4 CMT
As a result, Cycle 4 CMT was born in the summer of 2014. Chris also joined CMTA’s Board of Directors. From 2014 to 2023, partnering with the Charcot-Marie-Tooth Association (CMTA), we successfully raised over $2,000,000 to support the development of new drugs to treat CMT, to improve the quality of life for those with CMT and, ultimately, to find a cure! Chris and I grew the VT cycle, making it a nationwide event. Not only did we raise $2,000,000 over 9 years, but the effect on Yohan has been tremendous. Yohan tried biking again after failing miserably when he was seven, thanks to his uncle’s unwavering support and belief in his capabilities. With the help of his Uncle Anthony, his dad, Gilles, and Chris, Yohan regained confidence, learned balance, and gained self-confidence. Today, his electric bike has rocked his world, allowing him to cycle with his Uncle Chris, his dad, and his good friend, Vincent.
Yohan’s entire journey with CMT has been an incredible story of love, passion, support and transformation. Chris also had the idea of doing a podcast 5-6 years ago, but the idea didn’t catch at the time. Undeterred, he brought the idea up again several years ago, and this time, he would not take no for an answer.
CMT 4 Me Podcast: Giving Voice to the Community
In September of 2021, Chris and I launched – CMT 4 Me Podcast, which has enjoyed incredible success. CMT 4 Me is an emotional, heartfelt, and humorous podcast for the 3+ million people with CMT, their friends, family and the general public. It provides a platform for people with CMT to have a voice, describe challenges, find ways to overcome those challenges and share successes. Another goal is to spread CMT awareness and unite as a community. The CMT 4 Me podcast releases every 3 weeks and covers research updates, fundraising, unique stories and interviews with the CMTA community, including board members, branch leaders, and team members. The brother/sister dynamic makes the podcast fun, educational, emotional and relevant. I might hate CMT, but my connections with friends, family and community are invaluable. Listen here: https://www.podpage.com/cmt4me/
My husband left his job and eventually retired at 58 years old. The CMTA was undergoing organizational changes when he was asked to step up as CMTA’s Chairman of the Board of Directors. CMT research and science were his interests, and today, he works closely with our clinicians, scientists, researchers and pharmaceutical companies to find a cure for CMT. He also is passionate about the CMTA, the people and our future generations.
For Parents of Children With CMT
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. The CMTA has grown exponentially over the past 20 years.
Today, we have:
• A vast library of on-line resources for the CMTA community, including brochures, booklets, webinars, articles written by CMT specialists on the CMTA Advisory Board.
• CMTA Branches (support groups) across the United States.
• CMT Centers of Excellence: patient-centric, multi-disciplinary CMT clinics all over the globe, staffed by some of the highest quality CMT clinicians and researchers in the world.
Through these CMTA Centers of Excellence, children, adults and families affected by CMT can be assured of receiving comprehensive care by a team of CMT experts.
• Youth Programs and Compass Adult Programs.
• CMTA’s Camp Footprint (East and West) is the only camp in the United States just for kids with CMT! It is an annual, FREE, six-day sleepaway camp for youth (ages 10-18) with CMT. Camp Footprint envisions a world where children with CMT are empowered with the courage, hope, skills and community for a lifelong journey of realizing potential and developing strengths.
• CMT 4 ME Podcast, Walk 4 CMT, Cycle 4 CMT, Stream 4 CMT.
• CMTA Summit and Patient and Family Conferences.
• Patients as Partners.
• World-Renowned Research Program to Accelerate Drugs to Market for a cure or Strategy to Accelerate Research (STAR).
Our journey with CMT has been one of triumph, growth, and transformation. Together, we have faced countless challenges, finding strength in unity and the unwavering support of the CMTA community. We learned that focusing on abilities, not disabilities, can lead to a life full of extraordinary achievements.
My One Gift
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. ” I want to leave him with the empowering knowledge that he holds the key to realizing his heart’s desires – all he has to do is believe in his own capabilities!” In many ways, CMT has been a gift, presenting a canvas upon which my ideas can be seen and embraced. I feel incredibly fortunate that others have trusted my intuition and allowed me and others to fulfill our dreams and wishes on behalf of CMT community. My time with the CMTA, serving people with CMT has made my life worthwhile and incredibly gratifying.
Thank you to Kate Gwinn, Specialist, Product Communications from Horizon Therapeutics who asked me to write our story for Horizon Therapeutic’s website. She graciously reached out, asked questions, provided questions and quickly turned it all around to make this the most comprehensive and most memorable article I’ve ever written. Thank you for spreading awareness of Charcot-Marie-Tooth disease and CMTA!
“Can you please take your shoes and socks off?” asked the specialist. He wanted to see me walk down the hallway.
It was a Tuesday morning back in the spring of 2018. I was seventeen, about to graduate from high school, and looking towards the next chapter, college. But there was a problem. I started experiencing nerve pain in my feet that quickly progressed, causing my body to have problems with standing or walking. Also, the fatigue I tried to ignore for years worsened. After weeks of waiting, I received a referral to a podiatrist. I hoped that there was an easy fix to my pain. However, that was not the case.
After seeing me walk, strength tests followed. I was surprised when he mentioned there was noticeable weakness in my feet and ankles. I grew up as a dancer and had continued through the last few months of pain. I also had recently begun living my childhood dream of teaching ballet to young kids. In addition, I continued to take classes in various styles of dance. And while balancing schoolwork. How could there be a weakness in my feet?
My question only spiraled into more after the doctor finished writing his notes. He went on to tell me the three words I never imagined to be true in my life.
“You have CMT.”
I only sat there shocked as this shattering diagnosis began to stir in tears, discouragement, and doubts. There had to be some mistake. For the previous three years, I believed this neuromuscular disease only affected some of my family. I had to be fine, right?
Maybe the doctor only diagnosed me with CMT because of the family medical history. I’m sure I would have recognized the signs before since I watched this progressive disease affect others in my family. But, we later found out the diagnosis was correct. I did have CMT, and my life would change.
I knew the journey was going to be challenging. My future would be filled with struggles as I learned to adapt and live with chronic pain and a physical disability. And my dreams of continuing in dance and even pursuing a career after college seemed to disappear.
The Struggles Of Constant Pain
My pain progressed overnight and felt like a continuous nightmare. As the spring turned into summer, the warmth outside turned my nerve pain into a burning sensation. When it was too cold, I noticed numbness and ache. The fatigue felt just as horrible, and my days consisted of tears and trying to hold everything together enough to function. Every time I thought I had reached the amount of pain I could handle, a few months later, it was much worse.
I started wearing AFOs the following year. When I walked on my college campus, I could barely drive home from the loss of strength in my muscles. Each step resulted in more fatigue. I mentioned this to some specialists during a clinical appointment, and they recommended leg braces. I thought these orthotics would help me feel better. And I could continue to go about my schedule without needing as many breaks. That’s not exactly what happened. I realized over time the thick plastic braces brought on blisters and joint pain. The worst part was reaching the point of having to wear them everywhere. Thankfully now, I have different leg braces that are better.
As months turned into years, I realized that my chronic pain was not the only battle I would face. The depression and anxiety grew worse as I didn’t know how to handle the physical pain and stress. So, I endured months of sadness and fear of the future. I also struggled with feeling self-conscious about my disability. I was afraid of judgment from others if they knew I wore leg braces. I had struggled with this for years, and until more recently, only family and close friends knew about my AFOs.
Katerina’s
Blessings From The Pain
When the pain progressed, my heart only longed for more relief and hope that everything would be okay. So, to help with coping, I began writing more frequently in my journals. Most of the words came from discouragement, tears, and anger.
But, over time, I started recognizing the blessings of living in constant pain. My dancing meant even more because of the messages in the music. Many songs were about hope in the darkness, pain, and suffering. This led to a calling on my heart to create pieces of those messages. I started believing that God could use my story to make a difference in others suffering from an illness, pain, or disability. And I was right. I went past what others may have seen as impossible because of how much my CMT affects me.
At 21, I started a blog. I began sharing my story through short blog posts and invited others to be guest writers. This led to more opportunities to speak publicly at events and recently with two different podcasts. One is the CMT 4 Me podcast (https://www.podpage.com/cmt4me/). Though I continue to struggle with constant pain, I found my voice. I found my purpose by sharing my pain.
Another blessing would be I’m about to graduate from college, something I didn’t think would be possible. I went from walking to every class to using a wheelchair most days. While that adjustment took some time, I have been encouraged by the kindness of friends, professors, and staff.
Most of all, I am on the path of pursuing my dream career. In the future, I want to be a Child Life Specialist and help children in a hospital due to an illness or chronic pain. Some of this would be through therapeutic play, advocating their needs, and bringing joy to them and their families. I would have never pictured a more meaningful career if it wasn’t for my CMT.
Furthermore, I get to see those broken pieces of pain, tears, and discouragement put back together into something beautiful. If it wasn’t for the CMT, I most likely would not have the courage to pursue these passions further. And I would not be encouraging those living with chronic pain, disability, or limitations.
Encouragement
Friend, the pain you are experiencing is not the end of your story. You have more to offer than you may realize. Your passions and dreams may look different. And that’s okay. Stay strong, and keep moving forward. You never know how your story can be used to bless others.
Bio: Katerina is a young adult living in Southern California. She will be graduating college soon with a BA in psychology. Some of her passions include dance, writing, and volunteering with organizations such as the CMTA and Diamonds. In her spare time, Katerina enjoys meeting friends for ice cream and spending time with family.
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!
Kenny Raymond at Cycle 4 CMT, VT
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
Kate Lair and Kenny Raymond
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.
Highlights
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.
View From Camp on Lake Champlain
LizO: Yeah, it’s nice.
Chris: So, Liz O, guess what?
LizO: 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.
2012 – Joined Board of Directors, CMTA
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.
Serial Casted -short-term success
Post Surgery – Foot reconstruction surgery
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.
Skiing was a cherished moment in time.
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 …
Some of the many CMT symptoms
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-
LizO: Handshake.
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 and Funcle Chris 2022
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?
Chris Yeah.
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.
On an unofficial school vacation, Yohan got scuba certified!
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.
Chris: Totally.
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.
1st Annual Cycle 4 CMT
Chris: They were.
Cycle 4 CMT 1st Annual
.
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.
Paul Kang gives a speech in Juliana’s honor
Juliana Snow lost her life to CMT at age 5
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.
Emmily 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-
Riley
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.
Riley Ashe and Yohan at Camp Footprint
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.
LizO: Never.
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).
Chris: M.A.S.H.?
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 is Felix – Lizo is Oscar
Chris: Good point.
LizO: I’m Oscar. You’re Felix.
Chris: Totally.
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.
LizO: Absolutely.
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,
LizO: Mama.
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.
Chris: Exactly.
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 and LizO at Cycle 4 CMT 2021
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-
LizO: Shoes.
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?
LizO: No.
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.
Chris: Awesome.
LizO: Yeah, so I just wanted to throw that out there, and it’s available on Spotify, Apple, all the major podcast outlets. You can hear this podcast, CMT4Me.
Chris: Awesome. All right, Liz O, time to go. That’s a wrap, sis.
LizO: All right, thanks, everyone for listening.
Chris: Yeah, thank you.
LizO: Cycle4CMT.com or CMTAUSA.org. If you have an interesting story, let us know, info@CMTAUSA.org, info@CMTAUSA.org. And, watch us on YouTube. We’re live.
Thank you all for your unwavering support of a cause so dear to my heart – CMT. Yohan was diagnosed 22 years ago with this progressive neuromuscular disease (the nerves deteriorate and in turn. the muscles atrophy). Where has the time gone?
As we turn the page, Yohan, at 29, is starting a new chapter in his life. Despite a year of setbacks due to COVID, he never gave up his quest to find a satisfying job and he succeeded!
Gilles introduced Yohan to cycling several years ago. Having never biked as a child, Yohan did not know what it was to ride around the neighborhood with his friends. Now, he is experiencing freedom on 2 wheels – an exhilarating activity. His e-bike has changed his world.
As Yohan moves forward with his life, his CMT moves right along with him, damaging his nerves and making his muscles weaker and weaker. As a parent, it is extremely hard to watch your own child lose the ability to walk, open cans, and lack the energy to fully participate in life. Yet, Yohan never complains. He embraces his reality with humor and acceptance. Yohan truly is an amazing human.
It takes 10 years and a billion dollars to bring a drug to market. 90% of drug candidates in clinical trials fail. These numbers may sound discouraging, but because the genetic cause of CMT has been identified, we have been able to make remarkable progress recently. When one of our sponsored projects shows promise, our pharma and biotech partners step in to provide the additional funds to take them to clinical trials.
This year, my family (Me, Uncle Chris, Yohan and Gilles) is once again organizing Cycle 4 CMT events around the country. The signature VT event is on August 28, 2022. The San Fran Bay Area ride is on September 17, as is the ride in Wisconsin. Many around the country are doing their “OWN” ride, cycling anywhere, anytime before September 30, 2022.
After 20 years dedicated to CMTA, my time at this wonderful organization is winding down, but I refuse to disappear into the night. I’ll never be too far, and my heart will always be with my friends and family who deal with this cruel disease every single day. Whatever the future holds, let’s make this 9th annual Cycle 4 CMT the most memorable in CMTA history!
Yohan and his friend, Vincent
Here is my ask: Please sponsor me on behalf of Yohan. My goal is the sky, but I’m really aiming for the stars. My dream? To raise as much money as possible to change Yohan’s life and the lives of many living with CMT. To date, there is no cure for CMT. I have a big problem with that. Let’s change the course of this disease, together. Please give generously: www.cmtausa.org/elizabethcycle Checks accepted! Send to CMTA, PO BOX 105, Glenolden, PA, 19036. Please write Cycle 4 CMT n the memo line.
If you’d like to join an organized ride or do your “OWN” ride/walk to raise funds for CMTA research, please visit – www.cycle4cmt.com. Everyone is welcome!
The Cycle (and Walk!) 4 CMT event at the Old Lantern in Charlotte, VT on Sunday, August 26 will be upon us before you know it! Please act now to reserve your spot to cycle, walk and/or attend the unforgettable after-party!
Whether you are attending the event in person or participating virtually, here are your top 4 action items for you to complete right now:
The Cycle (and Walk or Roll!) 4 CMT event is so much more than a bike ride or walk around Charlotte, VT. It is a way to give hope to families and their children all around the world for a medicinal treatment to stop the progression of CMT.
I asked our friend Riley Ashe from Vermont, who never misses the event, to talk about what this event means to him. Here is what he said (get Kleenex out before pressing play):
My brother George’s heartfelt thoughts (grab yet another kleenex):
After-Party
Event After-Party
Rumor has it that we throw the best after-party of any non-profit event for miles around! Riders, walkers and party attendees are going to have a blast again this year.
After the morning activities, plan to relax in the beautiful setting at the Old Lantern in Charlotte, VT.
Quench your thirst with VT brewed beer, enjoy delicious food, including appetizers and a fully catered menu and bid on epic silent auction items provided by our supporters.
Rock out to the lively tunes of our favorite band, Leno, Cheney and Young, mingle with family, friends and hear about exciting CMT research updates from our internationally acclaimed CMT experts, Drs. Michael Shy and Steven Scherer.
CMT Experts – Drs. Scherer and Shy
Yohan and his Grandmother, Bev
The Love of an uncle for his nephew. Family is everything.
Our Fabulous Band
Walk 4 CMT!!
If you cannot make it this year – you can still participate by doing a VIRTUAL CYCLE or WALK or ROLL. It’s easy! Register: http://www.cycle4cmt.com. Here is some of the cool swag you’ll receive after you’ve reached your fundraising goal.
If you do a virtual event, send me pictures of your adventure! I need to brag about you! xoxo
Help us break the silence…get the word out about CMT!
“What’s up with the knee brace?” I asked 12-year-old Rylee, who was visiting from Pennsylvania for a couple of days. Head down, in a whisper, she told me, “My knee keeps popping out of joint. It hurts really bad when that happens. ” Just the thought of having my patella on the side of my leg for any extended amount of time makes me cringe. Yuk!
I will not stand for this. Will you?
Helping Yo with his drops!
“Ugh. Can you put these drops in my eyes?” Yohan groaned. He had just had eye surgery and needed drops every hour, on the hour. I almost said, “Buddy, you can do that yourself.” And then I remembered his tremor and weak grip strength. “I tried,” he grimaced, with water streaming off his cheeks, “but I missed!”
I will not stand for this. Will you?
Bethany and Elizabeth
I dread the thought of Bethany coming down with a cold because coughing takes energy and congestion robs her of the precious air needed to breathe effectively. Did you know that CMT can affect the nerves leading to the respiratory muscles? For some with CMT, the thoughtless act of breathing freely becomes a forced, challenging and anxiety-provoking undertaking, which may necessitate frequent visits to the ER. Not fun. Not fun at all.
I will not stand for this. Will you?
So, you see, CMT is much more than a funky way of walking, foot drop, high arches, and leg braces. CMT may also causes cramps, falls, balance difficulties, cold extremities, nerve, muscle and joint pain, curled hands and toes, altered reflexes, extreme fatigue, sleep apnea, hearing loss, etc. In short, CMT is a bitch!
I will not stand for this. Will you?
The most amazing thing about CMT is that we can fight it. Unlike many diseases, the genes that cause many types of CMT are known. The CMTA’s scientists are working tirelessly to stop or slow down the progression of CMT, and they are making headway. We’ve accomplished so much since 2008:
Highlights
• Clinical planning has started. Working together with the NIH and the MDA, we are developing our clinical infrastructure: new centers, more clinicians, patient information and history over time.
• We are developing ways to measure disease progression in people with CMT.
• We are starting to use cellular and animal models of CMT to help pharmaceutical companies test their drugs quickly.
• We are partnering with pharmaceutical companies and labs to apply breakthrough genetic therapies (like gene therapy, RNAi, CRISPR) to CMT.
• We will continue to expand our program to cover more forms of CMT.
Join me to raise the funds to bring a drug to market and rid the world of CMT. Big goal? Well, maybe, but why not dream big? We’ve got to start somewhere.
WE will not stand for this.
Imagine what we can do TOGETHER! Did you know funds are what stand in the way between us and a treatment for CMT? Not scientific understanding. Not resources. Not clinics. Not patients. MONEY. I certainly don’t have all the money needed to bring a drug to market, but with your help and the help of others, the money can be raised to support scientific research. It’s doable.
Chris Ouellette-The organizer of the Cycle 4 CMT
Want to help? Our family has put all its efforts into Vermont’s Cycle (And Walk!) 4 CMT event and thanks to friends and family like you, we’ve raised close to $650,000 over the past 4 years. That’s not chump change, friends.
We are now preparing for the 5th Annual Cycle (and Walk!) 4 CMT event, to be held in Charlotte, VT on Sunday, August 26. Every dollar counts. Any donation is valued. Spread the word.
To join our efforts to build a better tomorrow, check out our website: www.cycle4cmt.com and donate a little or a lot.
Here is how to start changing lives:
1) Register for the Cycle (and Walk!) event and/or,
2) Fundraise! Tell others why this cause is important to you and/or,
3) Spread the word and register a friend and/or
4) Sponsor a rider, a walker or the event itself and/or
5) Sign up for the after-party.
Thank you for offering a promising future to Yohan, Rylee, Bethany and the 2.8 million + people around the world with this debilitating disease.
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.
Stages of Grief
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.
I hear voices. Eavesdropping, as if I were an innocent bystander, I witness the back and forth volley of words, arguments, and reasoning. Often, I put a harsh stop to the banter, for fear of losing too many precious minutes to internal disputes and emotionally draining debates. Trying to reach my neutral, rational space often feels impossible, like I’m swimming against a strong current intent on overwhelming my frantic efforts. Yet, somehow, someway, I usually manage to quiet the noise, at least temporarily, and transition into a state of calm deliberation, frantic activity or self-imposed numbness.
Yohan had his first ever foot reconstruction surgery in June and 8 months later, he’s still not walking without using crutches or a knee scooter (see previous blog posts for the whole story). As soon as he starts to put full pressure on his foot, sores develop.
When that happens, staying off the foot until it heals is the remedy. To offset the pressure, he had his shoes modified, new orthotics made, which were adjusted again and again and again, only to have the sore reappear when weight-bearing. I know that all surgeries do not go as planned. You probably also know that surgeries are risky, in many, many ways. But I thought the surgeries that went awry happened to other people. But this time, Yohan is that other person.
The holidays came and went, and in January we found ourselves at a standstill, not knowing what direction to turn. The last pictures I sent to our surgeon showed how Yohan’s foot had healed, and it did not look right. For some reason, his heel looked misaligned, causing excessive pronation and weight distribution imbalance. Our surgeon, Dr. Pfeffer, was perplexed, but to his credit, he’s promised to make it right. Putting ego aside, Dr. Pfeffer is determined to make the next surgery the “last surgery” by asking for second and third opinions from well-respected colleagues. He wants to make 100% sure that no rock is left unturned before going back in to correct the lopsided foot and straighten Yohan’s toes. His humility, commitment, and compassion command our genuine respect.
Left Foot After Surgery
Nevertheless, I dread this second surgery. I just want Yohan to be able to walk with ease, even if it is only short distances. And in all honesty, I may have felt, if only for a microsecond, discouraged, angry and saddened by all the challenges Yohan’s already faced throughout his 23 years on this planet, due to the effects of CMT. He complains rarely and manages his day-to-day with laughter, humor, and hope. Yet it is difficult to witness his debilitating fatigue, chronic pain and now, successive surgeries. I wish it weren’t so, but it is so and that’s what is true.
In general, I tend to live in my head, not my heart. Why open up to intense emotion, when the risk is getting sucked up into a vacuum of never-ending despair and misery? When my thoughts become dark, the voices in my head try to cheer me up, scold me for being negative and/or neutralize the negative with positive thoughts. This process has become so automatic that I often no longer know what I feel inside. Many believe that raw emotions, in all their complexity, are an undeniable part of the human experience, serving as a profound source of inner guidance and direction.
Yeah, well my inner feeling mentor acts more like a sneaky stalker than a trusted ally, ready to pounce when I am least protected. I’d rather stay in the neutral zone and avoid the war-torn areas of my life. Yet I often wonder where those intense feelings go. Do they evaporate? Remain in the body unexpressed and ignored until the pressure builds so, they just explode? Do feelings have feelings? So many questions, so few answers.
The second surgery does not yet have a date, but it will be soon, in the near future. We’re all doing our best and trying to live in the moment. We’ll get through. Thanks for listening. And if you have a moment, let me know how you cope through difficult times. You never know, your advice and feedback may just be of help to others someone else.
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.
New Toy – LED TV
