Thank you for focusing on an artist with multiple sclerosis in the Spring 2019 issue of Momentum (“New Ways of Creating” by Brooke Pelczynski). I, too, find great benefit in artistic expression as I live with MS. Whatever we can do—crafting, painting, writing, dancing, etc.—is key. Photography helped me “turn a lemon into lemonade.” As my disability increased, so did my frustrations. My options for mobility and accessibility changed as my body changed. Finally, I realized that instead of just getting angry at an unexpected new challenge, I could snap a photo of it! Over a period of five years, I collected such photos, plus those sent to me by friends and family. The result is a collection of photos that show both successes and challenges. Some are as simple as a tool that helps me do an important daily task, or a lift that allows me to access a historic building. Other photos show some of the ongoing challenges. Of course, there are no prescriptions here for what any one person should do. We are all figuring it out as we go.
Mariana Tupper, Maine
Grace with mobility aids
I loved Jodi Johnson’s story about her Bumblebee (“Adventures with Bumblebee” Winter 2018–19). She showed so much grace in her progressive aids. She seems to OWN her life.
Julie Gross-Danielson, Washington
Motivated to run
I’ve never been a runner, so it’s probably a little nuts to start, but I am bored of generic PT exercises and decided to run a 5K by the end of the year because it will give me something to work toward. I do best with specific goals. I really appreciate tales of folks taking their ankle-foot orthosis on the run. I’m only 33 (diagnosed in 2012 when I was 26, right when all my friends were getting married and starting families like normal young women). I, so far, refuse to accept that it’s time for me to stop. I’ve gotten slowed down lately, but I am otherwise OK. Plus, I hear that exercise helps your cognition, and I want to keep myself sharp.
Amanda Zrust, Illinois
Voice in the MS wilderness
Thank you for printing the letter from Dorothy R. Dickhaus, “No more pie-in-the sky stories” (Spring 2019). Her letter definitely was a voice in the MS wilderness that I could relate to. I too have been experiencing the same issue with so many MS feel-good stories from people who can accomplish so many things in spite of their diagnosis. I understand relating the stories of those folks who have overcome incredible obstacles to achieve those results. But for many of us, just getting out of bed in the morning to start our day is overwhelming. None of us with this horrific disease are seeking anyone’s pity. Quite the contrary, we would only ask for a bit more balance in future publications for those of us who can relate to Ms. Dickhaus’ assertion that “MS is a physical disease. It is NOT a moral failing or absence of will power.”