30 Days of MD: Colette Wheeler

by Kevin Schaefer | September 28, 2020

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Day 28 of 30 Days of MD Topic: Genetics and Gardening This is @cocohollywood’s story: Lurking in my mom’s genetics is FSH muscular dystrophy (facioscapulohumeral muscular dystrophy). She unknowingly passed the disease to her 4 kids including me. While I never could blow up a balloon or whistle, two common symptomatic quirks of FSHD, symptoms really started when I was 16 years old. That means as a kid I could run and play and some of my happiest memories were running barefoot in the backyard and all the while snacking on tomatoes fresh off the plant or plums ripe from the tree. Over time I have had to make lifestyle changes to accommodate my weakening muscles. There was a period of time before I embraced using a scooter/ power wheelchair that spending time outside was limited to sitting on a beautiful beach or in a pretty park. Once I learned to accept my wheelchair as a tool the outside world opened back up to me. I could take my dogs on long walks, explore the accessible fire trails in the mountains surrounding Los Angeles and discover my new favorite hobby – gardening. My husband designed our backyard garden with my wheelchair in mind. The raised beds are high enough that I don’t need to bend over to access them and there are wheelchair accessible paths. There are a lot of labor intense aspects to gardening I cannot do, so I focus and celebrate the things I can do like picking fruits and veggies when they are ripe and planting seeds. As I hold the tiny seeds in my hand before I gently place them in the soil I think about their genetics. We like to plant the really special heirloom varieties you cannot find in a grocery store. Within those seeds is their DNA that makes them a cool Berkeley Tie Dye tomato vs an everyday beefsteak. Perhaps at one time some gardener thought those green and pink stripes in those big juicy tomatoes were flaws, but luckily some seed saver somewhere knew that they had value. Having FSHD in my DNA is certainly more complicated and difficult, but I have learned to accept that even though I may not look and move like everyone else, I too have value. #MDAwarenessMonth #MDAwareness #30DaysofMD

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