A “New Year” as an MS Activist

When I was a kid, I questioned everything! You name it, I wanted to know about it. I didn't see anything wrong with wanting to know more and more and more and even more than that. Listening to adults debate about one thing or another was the greatest experience in the world. Adults didn’t always want me listening in on their conversations – but I found my ways – whether hiding under the dining room table or sneaking behind the stairway banister.
 
You’re probably wondering what this has to do with the New Year, MS and being an activist? Well, when I was diagnosed with MS in the summer of 2005 after losing vision in my right eye, I thought my days of wanting to see people, much less talk to them, were over. I was consumed with grief, sadness and depression, and I couldn't seem to shake it. I took a leave of absence from work to cope. I couldn't wrap my head around having MS and what that could possibly mean for the once vibrant, go-getter that everyone had come to know and love. Now I was this...whatever "this" was, and I felt that I had no way of prying myself out of the MS abyss that I had begun to sink into. How do I get back to me: the wife, the mother? That was the million-dollar question that took me nearly 10 years to answer.
 
MS has taken me on twists and turns, including five disease-modifying therapies, countless MRI’s, and too many doctors to remember. Upon retiring at age 37 because of MS, I had to learn how to navigate the Social Security system, and quickly realized how difficult that could be. Something had to be done. The old Erika began to emerge, doing what she does best – absorbing knowledge and asking questions.
 
I took my questions to the National MS Society. I began talking to different people, getting involved with groups and volunteering when I could. The Society was interested in my story and helped me figure out how to best leverage my passion and talents to drive change.
 
As we head into the New Year, I have one challenge to share with my fellow MS activists: write your story down. Allow your pen and the power of your story to become your friend and even your voice. In 2015, I realized that sharing my stories meant power with important elected officials. I signed up to become an MS activist. I want to speak for those who can’t or aren’t ready to speak. I may be disabled, but I am not ready to disappear.
 
Now, I speak with a purpose. I’m meeting and corresponding with my elected officials to have bills sponsored to support those with MS. I’m writing to the FDA to make sure MS therapies are approved swiftly and quickly. This past September, I was privileged to go to Capitol Hill for the Rally for Medical Research, to tell my story, arm-in-arm with others who want their voices heard. As you may know, the Fiscal Year 2016 budget was passed in December and so many of the items we rallied for as MS activists were included. Our voices were heard! I am going to keep talking until somebody listens – and change is made. That's my promise to myself, my family and the MS community. 
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Erika

Erika James-Jackson

Erika James-Jackson is a "40-something" year-old who was diagnosed with MS in 2005. She retired from the legal profession due to MS and has committed her time to being a District Activist Leader for the National MS Society and raising awareness about the disease. She lives in Northern Virginia with her husband of 23 years and their 18 year-old son.