“I often get asked how I remain so positive. To which I used to answer, with all sincerity: I just do!… But what about on those really bad days? The days where the light is dim and the positive light is dimmer. What then?”
Those are the words of Eliz Martin, who writes about life with multiple sclerosis (MS) on her blog, The Sparkled Life. We recently asked Martin and a handful of other remarkable bloggers and advocates to share the words, thoughts, and even songs that help them remain optimistic in the face of MS. Even on those really bad days.
Here’s what they had to share:
Elizabeth Martin has been a multiple sclerosis sparkler for 6 years. She’s gone from wheelchair to cyclist and enjoys traveling with her trusty arm crutch. Follow along on her journey on Instagram or visit her blog.
What is your MS mantra?
Hope. Hope for relief. Hope for the courage to live this life fully. Hope for continued love and giving. Hope for the ability to walk for just a bit longer. Hope for uninterrupted peace. Hope for a cure. Hope. It’s such a small word and yet it encompasses everything I feel and need. I believe in this small word so profoundly and only can remain optimistic that it believes in me too.
What happens when times get tough? What activity makes you feel better?
After spending a year in the wheelchair, I decided to pursue extensive rehabilitation to relearn to walk. At the beginning of the journey I was tasked with identifying three goals I wanted to accomplish. “To ride a bicycle again” I wrote in large writing at the top of the page. I decided at that moment that multiple sclerosis might take some important things away from me, but this was not going to be one of them.
Three months later I was back on the bicycle. Even after a horrific fall that left more than just a scar, I countered defeat, adapted to the change, and now I gear up for long trail rides in my recumbent tricycle. I have become the cliché: When the going gets tough, the tough get going.
Justine Calcagno was diagnosed with relapsing-remitting multiple sclerosis in 2016. On her Instagram account, she celebrates her love of long distance running. Among her other passions: spending time with her husband and kitties, and trying out new gluten-free recipes. Calcagno is a university professor in the Washington, D.C. area, but in her words: “I’ll always be an Oregonian!” Follow Justine on Instagram.
What is your MS mantra?
I really relate to this question. I do have a mantra, which is, “You’re OK. You’ve been through worse.” I lost my brother when I was 17 years old when he died in an accident. We were very close. I’ve never felt so much pain in my life. When I was diagnosed with MS, I thought a lot about my brother. What would he want me to do? I know he’d want me to fight. When things get challenging with MS, I think about him, about how I’m still here, and about how the pain and frustration of MS doesn’t compare to losing my brother. So by reminding myself that I’ve been through worse, I know I can get through anything with MS. I still have a life to live well.
What happens when times get tough? What activity makes you feel better?
MS is such a fluid experience. Some weeks I feel fine, and other weeks are filled with pain. You really can’t predict its course from day to day. So, like MS, the activities that make me feel better vary, as well.
My first choice is to run far on a gorgeous trail. If I can’t run, I practice yoga. If I can’t practice yoga, I stretch gently. If I can’t stretch, I lay and meditate. If I can’t meditate, I breath. Coping — and thriving — with MS requires adaptability and flexibility. You have to keep an open mind and heart, and when times get tough, I do activities that fit with my needs and limitations at that moment.