Living with CMT - Kathy's Story

Imagine being one of the slower, if not the slowest kid in P.E. class. Especially during the mile runs. Now imagine the gym teacher tells you to do squats and the correct posture is if you are leaning on your heels almost as if you are falling backwards, and moments later, BAM, you hit the floor. Embarrassed and your face is turning red and hot, you immediately get back up hoping that no one would notice, but let’s face it, everyone did.

That was me, super embarrassed with my face feeling scorching hot, fourteen years old in my gym class. It’s funny, with time I can look back to that moment and can have a chuckle about it now. Eighth grade year was pivotal for me, because that was the year I was diagnosed with Charcot Marie Tooth disease. 

My name is Kathy Chau, I am twenty-eight years old, born, raised, and currently living in Salt Lake City, Utah. When I look back to my young adult life I think of the many moments I made myself feel small because of my CMT. If I am completely being honest, I loved the way heels looked on people, but I made it my whole entire identity to be a “tom-boy” and dress in sneakers or find whatever flats that didn’t hurt my feet.

Growing up my mom had so many different types of heels, and she would wear them to any occasion. I was always envious of both my mother and sister for being able to wear heels, wedges, and any shoes they desired. While I was stuck with some Nikes or Converse. I could tell at a young age around seven or eight years old there was something off about me. My sister and cousin had Heelys, (the shoes that had a single wheel at the heel of the shoe) and they were having so much fun walking and then the next moment running and wheeling away. I was never able to do that trick. It always seemed unattainable for me until eighth grade when I figured out the why. 

When I was fourteen years old and the doctor had informed us that I had Charcot Marie Tooth disease Type 2A, I don’t recall having changed much of how I was living after that fact. I think when it was confirmed that it wasn’t a terminal illness being diagnosed, (The doctors had

briefly mentioned the word “cancer” that scared all of us) my family and I had continued to live with this fact that “Oh, at least it’s not cancer, or terminal” and swept it under the rug. Hence the reason I had become adamant to look tomboyish in my young adult life. 

However, living in Utah where we have the most beautiful mountains and scenic views, everyone loves to hike or ski around here. I had always hid the fact that climbing stairs felt like Mount Everest, so I sucked it up and went on hikes with my friends, struggling with my endurance and ability. I thank my lucky stars that I have found a partner who I had met so young and he had learned along the way with me what I could do and what my limitations were. 

When I attended the University of Utah as a freshman, I wasn't prepared for all the walking and the hills this campus had. I struggled quite a bit, so I thought to see my neurologist again. He suggested that I wear AFOs (ankle foot orthotics) that would help lift my foot up while I was walking, so I wouldn’t trip over anything, as well as help my ankle stability. I had never researched CMT too much before so, I naively thought, “Well if I could wear these, would that mean my ability to be able to walk heel to toe would come back?” He told me that it wasn’t going to, and this would be a preventative measure. Of course, being eighteen years old, I could not even begin to imagine standing out even more. I was always able to “fit in” visually because CMT is also an invisible disease. How could he think I could possibly want to wear braces? That seemed preposterous in my head. 

Years passed by and I continued to live with CMT, but felt so ashamed of it, as if it was my fault. I have to note that being a child of parents who immigrated from Vietnam, and a first generation college student, there were cultural beliefs and values that were imposed on me at a young age. The “model minority myth” of being the Asian student who’s the top of your class, as well as having unrealistic expectations and standards of beauty. Constantly being dissected about your looks wherever you go, is something that I had to hold onto and felt like I had to strive for perfectionism at a young age. 

I was twenty-one years old and taking a course called, "Study of Disabilities" just for the credit. Only to have that be another turning point in my life to help me start to accept my disability and CMT for what it is. Solely from my experience from that class, I had visited my neurologist again and took his suggestion on using AFOs. That winter I had gotten a brand new pair of them, and for the first time I remember walking on snow and felt confident that I was not going to slip or fall.

During COVID, I remember feeling so isolated and alone, especially having no one in my personal life understand what CMT is like. I remember I was researching anything and everything about CMT, and found COMPASS, which is the younger adult program the Charcot Marie Tooth Association provides as a beacon of hope. They had monthly meetings and I decided to join one that fall. I remember seeing Nathan, Jules, and Katerina on the call and I also remember I most likely did not say a single word. I had listened to all the stories these younger adults had about their experiences with living with this incredibly difficult disease, and was in awe.

I remember Ashlyn telling a story about how she felt living with CMT and the invisibility of it, and the feeling I had at that moment, was something I will never forget. It was the fact someone experienced what I had been feeling my entire life, and was never able to put it into words. However, hearing it out loud was a cathartic feeling. I continued to make it my priority to attend these meetings and talk to all these people who were, just to reiterate one more time, my

age range! It has been nothing short of feeling like I had found some long lost friends who just got me. 

About a year later, I found a video that the CMTA had posted about Camp Footprint, posted with a song that reminds me of my late grandmother. I took that as the strongest sign to sign up as a camp counselor for that summer. I had never attended a summer camp, or any type of camp with so many other kids before. All I had seen were in movies, like Camp Rock or The Parent Trap. I made the courageous decision and went for it. When I got to the Portland airport, I was greeted by Camp Director, Jonah Berger. For those who know him, he has a special way of connecting with others right off the bat. Nervous as I was, I felt excited and hopeful for what’s about to come. I was catapulted into the most magical and wholesome week I have ever experienced. Those moments I had during that week of camp had altered my life forever. I had finally met my friends I’ve made on COMPASS in real life. I felt good. I felt safe.  I was in the Jungalow cabin my first year at camp with such rockstars of cabin leaders, Erin and Riley, who made it nothing short of transformative. 

This week was revolutionary for me. It helped begin to fill that lonely and sad void that little Kathy was feeling her young adult life. It had started a fire within me, and since that week, I made it a goal in my life to continue that connectedness feeling I had felt during camp. Since then, I have become an even more active community member on COMPASS, now serving as a part of the leadership team, relaying the mission of that feeling of belongingness and hope for those who have CMT. 

Last summer, I served at both camps. I also had the honor of serving as a cabin leader for Camp Footprint west coast camp this past June. I have always loved working with people, that is what I know is true about myself. I recently graduated with a Bachelor of Science in Biology with a Disabilities Studies minor. I have been working with WeBeWell which is a program that provides psychoeducation from positive psychology to students ranging from middle school to college level. I find this work I do to be fulfilling, and to help others feel seen and heard from all aspects of life. My next goal is to be a Branch Leader for Salt Lake City! 

My piece of advice is to reach out. There is always someone there to answer and help you feel seen and heard. I can always be that person for you as well. Thanks for reading my story! <3

Kathy Chau is twenty eight years old living in Salt Lake City, UT. A recent graduate with a Bachelors of Science in Biology and a Minor in Disabilities Studies from the University of Utah. She has CMT Type 2A and is an advocate for those who seek to reach out and find their funky feet fam. She has a passion for mental health and wellbeing. She enjoys talking with her friends and going to group fitness workout classes with them. She wants you to know that if you need someone to be there for you, she can.

How to reach out to Kathy:

Instagram: kathychau

Facebook: Kathy Chau

Email: kathymchau@gmail.com