Written by Allison Foss
I promised Kathryn Clemens, our Community Program Coordinator based in St. Louis who manages our blog, I would provide some content on the topic of gratitude. I have loved
this topic since reading Cami Walker’s book, 29 Gifts several years ago. A highly recommended read for those battling rare disease.
Enter another book that had been collecting dust on my nightstand. In all honesty, it’s a chore for me to get through a physical book these days. By night, I am exhausted, my brain on overload, let alone the thought of holding a book up and not falling asleep is a real debacle! But at the start of 2024, I told myself I was going to pare down the stack, so I’ve currently got bookmarks in about 5 different books!
As I hopped on the plane to go to Rare Disease Connect in Neurology in Amsterdam in mid-November, I had the book, Walking on Pins and Needles: A Memoir, tucked into my carry on. I had read about said book in my sorority magazine a few years ago about a fellow
sorority sister, Arlene Faulk, who was conquering MS and how she found success in her life journey. While I won’t spill the whole story, one general theme is that over the 20-year span of time to diagnosis, Arlene is reluctant to share her story with others. In other words, she keeps her diagnosis mostly to herself for a great length of time.
As I was reading the book, I found myself turning the pages faster and faster to learn more about her journey. I was in awe of her story and strength. But I found myself constantly being so grateful for sharing my story and journey as I have navigated life. When I speak to others about my journey, I often share that I don’t feel I really accepted my diagnosis until my sophomore year of college, nearly 15 years post diagnosis however growing up everybody knew I had a “disease.” Since that time, I feel I have been open and willing to share with others what it is like to live with a rare disease.
And I am grateful for that. I am grateful for those who have been brought into my life as I have navigated good days, bad days, and roller coaster days. I am grateful for the community that surrounds me and that I am part of. I think of all the people I wouldn’t know had I not shared my journey.
Deciding when and how to share your journey is different for each person impacted by rare disease and takes a lot of courage. But let me just say, once you do share your story, you will be welcomed by so many others facing some of the very same battles and in a funny way, I think you will find gratitude to know you aren’t alone.
As we approach the holidays, we recognize that this can be a lonely and isolating time for those with myasthenia gravis or other diseases. Please know you aren’t alone. We hope you’ll take an opportunity to connect with us at the Myasthenia Gravis Association and share your story.
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