Dawn’s Story
Dawn describes how running has changed her life. Her passion and determination led her to found a charity to support patients with chronic disease.
I’ve been hustling to stay a step ahead of Multiple Sclerosis for over 24 years, which is more than half my life. After my diagnosis at age 23 I felt I had no control over my body, so I went for a run. I only ran for about 20 minutes, but those 20 minutes changed my life forever. Running became my way of staying ahead of my MS – I was outrunning MS.
Over the years I ran 16 marathons, and tons of half marathons and 5Ks. I was strong, in control and fighting off MS one mile at a time. Until one day I wasn’t. While running a half marathon in Boston my body was feeling off, my gait felt different and a bit unreliable. I started catching the tip of my sneaker on the pavement. It was foot drop.
MS had caught up with me and was threatening to take away running. While I was devastated, I wasn’t going down without a fight. I researched, google searched, visited doctors, physical therapists, foot doctors, acupuncturists, everyone and anyone to find a way to keep running. After a few years of trying different exercises, treatments and support braces, I landed on a carbon-fiber AFO. But even then, I tried about half a dozen AFOs before finding one that worked for me.
The process to get to where I wanted to be, to get back to running and to continue my hustle to outrun MS, was not only mentally exhausting but it was damaging to my wallet. Healthcare insurance has a lot of gaps in it and a lot of fine print which feels like it is written in invisible ink.
I have been denied physical therapy because some anonymous person at my health insurer decided I couldn’t improve any further (FYI: Anonymous person, you were so wrong!). AFOs are covered at only 60-80% of the cost and are sometimes not refundable even if the fit is wrong. I have also explored functional electrical stimulation devices which are not covered by insurance at all and cost thousands of dollars.
How can it be that health insurance can’t help me be healthy? How can someone who has health insurance have such high out of pocket costs just to keep active? I started feeling annoyed that the resources I needed to support my lifelong battle with MS were not covered by healthcare insurance, and that my insurer seemed to not care.
I began to feel like a tweener (Tweener: a person or thing considered to be in between two other recognized categories or types) and I realized a lot of us with MS are tweeners – not sick enough to qualify for a lot of medical benefits or help, yet healthy enough to contribute to society, work our jobs, pay our bills despite feeling the undertow of our illness. Lots of us wind up stuck somewhere in the middle – sort of lost in the system – when it comes to getting the resources that we need to stay healthy.
That’s why I founded a 501(c)3 charity called In My Running Shoes. Our mission is to help tweeners with chronic diseases who want to be active but need support that is not provided through typical healthcare channels. If you feel like a tweener and need some financial support to stay active, please visit our website and apply for a grant here: https://inmyrunningshoes.org/apply/
We have supported the purchase of an electric trike as well as functional electrical stimulation walking aides. Let’s continue to outrun, out walk, out bike, and outpace MS one mile at a time!!
