Meet Emmily, a guest writer for this blog series.
“Alone we can do so little; together, we can do so much.” - Helen Keller
This quote embodies my experience living with Charcot-Marie-Tooth disease (CMT) - an inherited peripheral neuropathy leading to progressive muscle weakness and loss of function and sensation. Fifteen years ago, however, my perspective was very different. I would’ve chosen a quote filled with disappointment and resentment. To me, CMT was a villain, a barrier that seemed to block the path to a life of freedom. As a young girl who struggled with basic activities, like running in P.E. or opening a water bottle, it was a challenge to find any positive aspect of living with CMT.
Today, my perspective is the complete opposite. What once seemed like a hopeless obstacle has become a source of strength and gratitude. But, this did not happen alone. It was my incredible family, friends and the CMTA community that made this shift possible. How did the support from others create such a dramatic shift in perspective? Let’s start from the beginning.
CMT Journey
As a toddler, I frequently complained about foot pain, but my parents assumed it stemmed from my shoes. However, as the complaints persisted, my parents took me to the doctor. As many with CMT know, it wasn’t just a single appointment - it involved several visits with numerous specialists and neurologists trying to understand my condition. Eventually, at the age of three, my parents received an answer - I was diagnosed with Charcot-Marie-Tooth disease Type 2K.
Growing up, I was always eager to participate in as many activities as I could. Until I turned ten, I played soccer, danced, learned gymnastics, and cheered. Although I wore AFOs and needed to take frequent breaks, I didn’t view myself as any different from the other kids. It was only when my CMT began to progress that I started to notice a change.
When I started middle school, I began to lose my balance, fall more frequently, and as a result, hurt myself. I started pushing a wheelchair for balance support, and sitting in it when my body ran out of energy. Additionally, I began forming a close group of friends who loved to do fun activities on the weekend, like bowling, shopping at the mall and having sleepovers. This is when I noticed that what used to be pleasurable turned stressful. I started worrying about things that typical eleven or twelve-year-olds might not consider: Would my wheelchair fit in my friend's car? Would someone be available to help me put on my AFOs? Would someone offer to push me in my wheelchair? Although I soon discovered that my friends were always ready to help, I still felt uneasy about needing constant assistance.
The more I learned that people are always willing to help and don’t think twice about it, the more I started talking about my CMT openly. I began incorporating the topic in my school speeches, sharing my CMT journey on social media, and fundraising for the CMTA. For the first time, I felt like an expert in this subject, and felt I needed to educate others to raise awareness about CMT.
The Blessing of Community
Shortly after I started high school, I came across a post from a girl about CMTA Camp Footprint. Her post featured photos of her and her friends ziplining, kayaking, and swimming - activities I never imagined I could participate in as a young girl with CMT. I quickly reached out to the girl and one of her camp friends on Instagram. That night, the three of us exchanged phone numbers, created a group chat, and have been best friends ever since. Those friends are Erin Black and Riley Williams.
Thanks to Erin and Riley, I was introduced to an incredible community of people with CMT. Among them was Jonah Berger, now the CMTA Youth Programs Manager. On my first phone call with Jonah, I was asked “What’s your favorite food?”, “What was the first concert you went to?” and “Will you be a member of the very first CMTA Youth Council?”. My 15-year-old self was thrilled! The following summer, I flew to Denver, Colorado, met eight other individuals my age living with CMT, and felt like I found my home.
Six years later, I can confidently say I found my home in the CMTA community. I see these people as a breath of fresh air. I never have to worry about asking for help with my AFOs because others are doing the same. I can joke and laugh about shared experiences, like tripping or losing our balance. Most importantly, I know I have someone to confide in about my CMT, and they understand. These feelings are invaluable and helped me shift my focus to the positive aspects of CMT.
Now, as a 21-year-old woman, I view CMT as the biggest blessing of my life. I attend Camp Footprint annually, host a Walk 4 CMT event in Orlando, and travel to visit my CMT family multiple times a year. While many aspects of my life bring me joy, it’s people that truly make my soul shine. Without CMT and the community that has come out of it, my life would be very different. May we all find the people that make us fall in love with life!
Emmily is a 21-year-old from Orlando, Florida. She graduated in May with her bachelor’s degree in Advertising/Public Relations and is now working as a Marketing Communications Specialist at the University of Central Florida. In her free time, Emmily enjoys visiting Disney World, reading a good book, traveling with her best friends, and volunteering for causes close to her heart, including the Charcot-Marie-Tooth Association. She was diagnosed with CMT Type 2K when I was three-years-old and believes her purpose is to educate others about CMT disease and the power of community.
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