Living With CMT - Cheyenne's Story
In 2013, I went to my primary care physician who took a look at my hands and then to my surprise looked at my feet. He pondered, asked me various questions for a while, crossed his arms, shrugged his shoulders and said, “I believe you have CMT.”
Introduction To Writer
Hello, my name is Cheyenne! I am from Los Angeles, California and currently work as an Associate Marriage and Family Therapist in the state of California. I have over 3000 hours of clinical experience and have had the opportunity to work with children, young adults, couples, individuals, as well as teach parenting, co-parenting, and relationship skills workshop classes. I love working in this field, but my true passion in life is advocating and providing awareness to others about Charcot-Marie-Tooth Disease.
In 2013, I went to my primary care physician who took a look at my hands and then to my surprise looked at my feet. He pondered, asked me various questions for a while, crossed his arms, shrugged his shoulders and said, “I believe you have CMT.” All my mind is thinking is “what in the Country Music Television are you talking about?” He continued, “You are going to have to see a neurologist for further testing and also to rule out a MS/ALS diagnosis.” Over the next several months, I began going to various doctors to get an MRI, nerve conduction test, electromyography test, and eventually genetic testing to confirm the Charcot-Marie-Tooth disease diagnosis.
My CMT story can be broken down into 2 parts: pre and post diagnosis. Pre-diagnosis includes various stories where I am subconsciously recognizing signs of CMT, but with an internalized narrative telling myself “I am just clumsy; I am not good enough; I just need to work harder.” My dad’s side of the family is large, loving, Italian, and (unfortunately for me) athletic. All of my aunts, uncles, cousins, 2nd cousins, first cousins once removed- you name it, played sports. Of course, at a young age, my parents had me participate in various activities such as roller skating, wakeboarding, and trying to learn how to play the guitar, but ultimately I fell in love with playing softball at 8 years old.
Throughout my softball career, I played park ball, Little League, All Stars, and even ended up on a travel ball team. I was pretty good for a girl with a disability! I started to notice little inconsistencies here and there that made me different from the other girls. By the time I was 16, it was pretty difficult to grasp the ball, especially in cold weather. Running became almost impossible, and I even rolled my ankles over 20 times! My mom also noticed how skinny my hands were when gripping the steering wheel when learning to drive. For 2 years, I dismissed her concerned thinking, “they have looked like that my entire life, this is normal.” What I didn’t realize is my hands weren’t normal but they were my normal.
Post diagnosis, I experienced a sense of relief. I was finally able to externalize and name what was actually going on with me. It was no longer the narrative of “I’m clumsy, not good enough, need to work harder” but “I have CMT, which can make fine motor skills, tasks, and things like running much more difficult.” The diagnosis would also be an entire identity shift for me that I needed years to process. I was diagnosed with CMT Type 2, and due to the current genetic testing available, they are unsure of my subtype. In the near future, my father, grandmother and I will be giving vials of our blood to the genetic specialist in Florida to hopefully find out what subtype we have.
I am now thankful for this blessing in disguise because it gave me the opportunity to go to therapy, which taught me so much about myself and my disability, how to effectively communicate with others, understand transitional phases of life, become self aware about family dynamics, increase my self-esteem, manage my anxiety and depression, and so much more. My therapist changed my life, so it is my honor and duty to continue doing this work to help others the way she helped me.
Emotional and mental support can have an enormous impact on a person’s quality of life. The growing need for mental health awareness and advocacy is higher than ever, but I truly believe we are headed in the right direction for a better future. Please remember that mental health is just as important as physical health. It’s okay to be emotional, and even better, to express that with others who make you feel safe, seen, and heard. There are people who will support you: family, friends, strangers, CMTA; Don’t get lost in negativity. You are not alone, you are good enough, and you are loved!
“Be the change you wish to see in the world”
Cheyenne is 28 years old and is from Los Angeles, California. She received her BA in Psychology from CSU Channel Islands, and Master’s degree from Pepperdine University studying Clinical Psychology with an emphasis in Marriage and Family Therapy. In her free time, she still enjoys playing softball in an adult high arch league with her family. She loves to talk about her service dog “Mamacita”, and hopes one day pitbulls will stop being stigmatized as a bully breed.
For inquiries about Therapy or Mental Health Services visit CheyMTherapy.com or email her at Cheymtherapy@gmail.com
Follow her Instagram page for relatable CMT and mental health content: Cheymtherapy
Be on the lookout for the CheyMTherapy Youtube series coming in 2024!