August is a Great Time to Become an MS Activist
During nursing school I volunteered an average of 200 hours per month as an Emergency Medical Technician (EMT) at the University’s rescue squad, VEMS. Yes, I could have easily spent those hours sleeping or hitting the books, and without such a grueling schedule I certainly would have had the chance to go to more parties on the weekends. Instead, during my free time between classes and overnight, I chose to put on my uniform and answer the call of a blaring alarm over and over again. But this was not entirely selfless, not by any stretch. My patients did just as much for me as I ever did for them. My fellow volunteers also became some of my best friends in the whole world, and it’s how I met my future husband (9 months and counting until the big day!). We bonded in a way only a group of people forced to pull 72 hour shifts together could. Sometimes we sat around and did nothing, and sometimes we ran from call to call with unrelenting urgency. True, I don’t have a dime to show for my thousands of hours of service, but what I do have is so much better.
Volunteering became very important to me once again when I was diagnosed with MS. In my opinion, immersing yourself in the service of others has always been the best way to put your own problems in perspective. It’s just downright good for the soul. So how can you take your personal experience with MS and use it to help others? It’s easy! Become an MS Activist!
Tell your story.
We live in the social media age, and it’s an incredibly effective way to have your voice heard. In fact, I would be willing to bet that most of you found this article via social media! Share your MS story on Facebook or Twitter. Start a blog. Make a Pinterest board. Share your story on multiplesclerosis.net or with the National MS Society. In fact, the NMSS compiles stories and they may even select yours to be featured in the media (you can submit your story here)! Sharing your experience about what it is like to live with MS is the best way to raise awareness. Think of every time you have been frustrated by someone insisting that you must not be that sick because you look so good. Then think of what it would be like to live in a world where you could tell someone you had MS, and they would actually understand what that means and not give you a hard time for using that handicap parking spot, or needing to rest for a little bit.
Politics, Politics, Politics.
If you are anything like me, you like to keep out of politics whenever possible. However, this year I decided to attend the Public Policy Conference in Washington, D.C. I wasn’t thrilled at the idea of talking to politicians all weekend, but I also know it’s necessary if we want anything to get done. During the conference we spent a day on Capital Hill speaking with multiple Senators and Congressmen one-on-one. I was shocked at how intently they and their staff listened to me and to the other activists as we told our stories. And that’s really all we did. We just sat down and spoke about how MS has impacted us, and what actions they could take to improve our lives. Almost all of them already had a personal connection to MS, which really showed me exactly how common MS is.
In a nutshell I left the conference enthusiastic about politics, and about getting involved. I was shocked at what a great response we had! 190 Representatives and 57 Senators supported increased funding for NIH; 13 members of Congress joined the MS caucus and 25 supported the Complex Rehabilitation Bill, which could potentially help make assistive devices like power chairs available to every MS patient. And the crowning achievement of MS Activists nationwide was the House voting to double funding for MS research to 10 millions dollars!
So where do you start? You can check in with your local chapter of the MS Society. They likely have an entire advocacy committee that can point you in the right direction. Their website also has great information for anyone looking to get more involved.
Right now is a great time to get started with advocacy. Traditionally, members of Congress take the month of August off to return to their home states. Members use this time to meet with their constituents and to hold Town Hall meetings. This is a fantastic opportunity to interact with your Representatives at home. To find out if your Member is holding a meeting, check their website, social media accounts, or call their office. If your Representative is not holding a Town Hall you can call and schedule a meeting with them or their staff. I met with the staff of my local Representative in their office a couple of months ago. We sat and talked about my MS story, and about how important it is to fund MS research. Look over the current advocacy issues, and discuss the one that means the most to you. Connecting personal stories to political issues really goes a long way.
I hope if you have not already become involved in some way that you will consider doing so. Good luck