Meet Karli, a guest writer for this blog series.
“Walk a mile in my shoes– but also with my feet!”
I am currently preparing for my 3rd CMT surgery. My 1st operation was at twelve and my 2nd was at 17. While I was involved in the process, ultimately it was my parents making the decisions and taking care of the details. Now that I’m “grown up” the decisions are mine to make and that is really scary!! This surgery and its recovery period will be intense, but it will be something that will help the longevity of my abilities. The current me feels scared but I know the future me will thank me one day! I feel confident in my decision to have it done thanks to some of the incredible people I have met through Camp Footprint. (Special thanks to Laurie and Adam Palermo as well as Maddie Jarret– they’re true angels on this earth.) I think camp has played a huge part in my ability to accept and express myself with CMT. I don't feel the urge to hide certain parts of who I am, whether it be things I struggle with or my goofy gate.
Camp is a place where you can truly be yourself. I have always had a strong sense of who I am and have always loved expressing that through clothing and camp has been such a fun outlet for that. I am a self-proclaimed fashionista and genuinely find getting dressed every day to be fun! I love that on days when I am feeling sad I can choose bright, vibrant clothes to try and illuminate my positivity. And then on days when I am feeling happy and confident, I can wear something comfortable and cute. No matter how I am feeling, jewelry and accessories have always been a constant for me– including shoes.
Having funky feet means struggling in the footwear department. Growing up, shoes were everything to me. When visiting my Grandma, I would go straight to her closet and try on all of her shoes, she was always wearing some sort of high heel. After my diagnosis and surgery, my footwear options dwindled. It was no longer practical, or safe for that matter, for me to be wearing my platform flip-flops or trying on my grandma’s heels. I still struggle hardcore in the category of shoes. I want to be in the cutest possible shoe for each outfit, and while there are really cute flats these days... none of them work for my feet, especially walking in them. As of right now, I am a sneaker girly. I am always in a chunky pair of sneakers with my custom orthotics inside. When it comes to dressier footwear I have 2 options– my wideset Mary Janes from VIVAIA or a slightly lifted Birkenstock-like sandal. (I found those on a lucky Nordies Rack haul). I think shoes will be something I mourn my whole life. It has been 18 years since my footwear dreams changed, and I still cry when posting new shoe pins to my “maybe in another life” board dedicated to shoes I could never wear on pinterest. (I’ll link it here for your scrolling pleasures, you’re welcome.)
Somedays it is harder than others to accept the limitations of not only my footwear options, but also of my body. One thing I always feel confident in is my ability to make the right choice for my body and health. While it is definitely hard to walk away from a cute pair of shoes, say no to a physical activity, or say yes to another surgery, I find comfort in the fact that it is for the health of my feet, the only pair I’ll have my whole life. That is something that gets me to the next day, even on my hardest days– remembering that this is the only body I’ll ever have. My best bet is to take good care of it and be grateful for what I can do. I’ll leave you with 3 things that make me feel capable and proud of my body:
1.Wake surfing in the lake behind a boat.
Growing up we spent a lot of time at Lake Mead. Long before I was ever diagnosed I would try countless times to get up on the popular water sport of the era, the wakeboard, but I was never successful. After my diagnosis and recovery from surgery, my dad found this special board with unique boots where I could set my foot into them and strap them up, rather than having to push my foot through an opening. Even after a successful surgery, I was unable to get up on the wakeboard. Fast-forward to after I graduated highschool and after my second surgery and recovery, we witnessed what I consider a family miracle– I finally got up on my wakeboard! It was a huge accomplishment and a culmination of my surgery and years and years of effort. Funny enough the process started all over again when a new water sport became popular, wake surfing.
During this sport you are much closer behind the boat and your feet are just set on top of the surf-like board, rather than strapped in. This new process took almost another decade for me to get down. I would try again and again to get up on this new board but was familiarly unsuccessful. It was hard for my body to understand the concept of flipping the board up behind my heels. One time at Lake Powell a family friend jumped into the water after what felt like the millionth fail of the day to get behind me and coach me up. He told my dad we were ready, straddled me and then flipped the board up with his able feet. I got up!! Since that moment, it has just clicked for me and now it is like riding a bike, muscle memory kicks in.
Looking back on this entire process (x2 lol) I want to recognize the patience and support of my siblings and parents in allowing me to continue trying even with the consistent result of failure. They would hang out on the boat for hours and never once told me maybe it was time to throw in the towel. I can only imagine how frustrating it would be to watch your sibling try something even when you know what the outcome will most likely continue to be. My dad always had a smile on his face and said “Good try Karkar!” while my mom said “Someone throw her the rope!” for another try. Those are the moments in my life that shaped and solidified my resilience and grit. So thank you to my family!!
2. Standing up on a paddle board.
This also took years of practice and trying. I first got up in the ocean with the encouragement of my childhood bestie Cass. She is also someone who is continually cheering me on. We were so excited for me to be standing up on the paddle board, in the ocean!! After I learned to stand up in the ocean once we took the paddle boards to the lake it felt like a piece of cake. This is also an activity we do at Camp Footprint, so I get to see my camp friends learn to love one of the things that makes me feel most strong.
3. Playing the guitar.
I learned to play the guitar at 12 years old during the recovery from my first surgery. I got a guitar that Christmas and instantly fell in love. The popular, up and coming artist at the time was Taylor Swift. Her songs were catchy, relatable, and super easy to play! As someone who already loved music, I found a deeper love for music when I could create it myself. As my disease has progressed and my hands have gotten weaker, I feel grateful that my body is still capable of playing the guitar and creating music.
Karli Welch Schnobrich is 29 years old and lives with CMT Type 1A. She is the second oldest of five children. She finds joy in her marriage, being around family, being an aunt, and growing through Christ. Karli loves music, watching the sunset, being in the water, and expressing herself through fashion. She currently lives in Las Vegas, Nevada.
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