Meet Haley, one of the guest writers for this blog series.
“You have Country Music Television?”
A question that has plagued me for as long as I can remember. Considering I grew up about two hours southwest of Nashville, Tennessee, it makes sense that this is how most people react when I say I have CMT, or Charcot Marie Tooth if you want to get technical.
Introduction To Writer
Hello everyone! My name is Haley LeAnne White (it rolls off the tongue better if you say it in a southern accent), and I have CMT1A. You may be thinking, “What in the world is Charcot Marie Tooth disorder?” Put simply, it is a group of disorders that damage the peripheral nerves, the nerves that help your brain and spinal cord communicate with the rest of your body. For me personally, I have foot drop, hammertoes, arched feet, hand tremors, frequent loss of balance, and poor circulation, just to name a few symptoms. I spent a lot of my life trying to ignore it, but CMT will not be ignored.
CMT Journey
Fortunately for me, I have many family members with CMT, so my official diagnosis in 2019 didn’t come as much of a surprise. Unfortunately for me, my mother, my biggest CMT warrior and supporter, passed away tragically in 2016. To say I was lost would be an understatement. I realized at that time that I heavily relied on her to teach me about CMT and guide me through the life of uncertainty that comes with it. I am blessed to have a pretty solid support system around me, but I was still searching for a way to stay connected with my mother and the CMT community.
That’s when, in 2022, I found Camp Footprint and decided to volunteer as a counselor. I say this often, but camp is pure magic. To be able to spend time with others with CMT is everything to me, and I feel so honored to be a part of it. I am thankful that I am not on this journey on my own and that I can continue this journey for my mom.
Encouragement
Overall, my diagnosis has brought many highs and lows. I would be lying if I said I don’t have hard days both mentally and physically. However, what I have gained in the CMT community far outweighs those bad days. As a Christian, I turn to Romans 8:28 and truly come to understand that God took a less than appealing situation and made it my purpose.
To those who are reading this that have CMT, please know you never walk alone, even if you walk a little funky. The entire CMT community is cheering you on, and if we haven’t met you yet, we can’t wait to. To my family, especially my older sister, Kelsey, and my younger brother, Peyton, I just want to say thank you for never leaving me out of an adventure and for always making me laugh. And last, but most definitely not least, to my Camp Footprint family, never forget how amazing you are and how much I love you all.
When I was asked to write this, I was asked to include a quote that inspires me. As an avid consumer of K-Pop and Asian dramas, I wouldn’t be Haley LeAnne White if I didn’t include a quote from one of my favorite Chinese movies, Better Days.
In the midst of utter chaos, bitterness, and uncertainty, the main characters are seen reading a quote that states, “We are in the gutter, but some of us are looking at the stars.” Don’t forget to look at the stars, people.
Haley LeAnne White grew up in a small community called Walnut Grove, Tennessee and recently moved to Muscle Shoals, Alabama. When she’s not at one of her four jobs, you can find her fangirling over Jesus, Korean boy bands, Asian dramas, and sports.
Comments