20 years ago, my mom was diagnosed with MS. She had just completed her bachelor’s degree – to this day, I am not sure how she was able to juggle going to school, raising three ornery boys and working as a waitress. I couldn’t imagine what it must have been like to find out that all of your hard work and achievement was being offset by a medical diagnosis that you didn’t quite understand.
I give her credit though; she didn’t let it slow her down. She went back to school to pursue her master’s degree and spent time teaching and mentoring high school and middle school students. For a while, things were ok, she’d have the occasional flare up and would miss some work. Over the years, the flare ups got worse and more frequent and her physical abilities declined, eventually to the point that she is unable to do much on her own.
But still, she fights. If nothing else, she is stubborn. She may not be able to move around on her own but she does what she can to help. She still worries about her boys (who are now all grown up) and calls to make sure we are ok and that we are eating enough, as all Italian mothers do. Most importantly, she still enjoys good company, a glass of wine and a good party.
It is very difficult to watch someone you love lose their freedom. That is the worst thing about this disease; it takes away people’s freedoms and their dreams. My mother dreamt of spending her life teaching and educating the children in our state. Multiple Sclerosis stole that dream from her.
As a child, I remember the Multiple Sclerosis Read-a-Thon program. Each year, I would read a barrage of books and I would collect money from friends and family for each book that I read. At the time, I was mainly interested in the prizes and awards that were part of the program. Today, my perspective is a bit different. A few years ago, I started to get more involved with the MS Society. At first, it was organizing a walk team. We’d gather up in front of Frawley stadium each spring and we’d take turns pushing my mom in her wheel chair as we meandered through Wilmington. Every year, the team got a little bit bigger and I got more involved as I began to see the value that the MS society brought to the community and those that needed help and assistance in their fight against MS.
Through happenstance, my friend Bianca Fraser-Johnson was talking about her involvement with the MS Society. We talked for a few minutes about my mom and my involvement in some of the local MS Society events. If you know Bianca, you are well aware that she can be quite persuasive. She told me about her efforts to start a new committee – a pipeline of future leaders for the MS Society to be known as the “Emerging Leadership Committee (ELC)”. She also told me that I “had” to be part of it. That was just over 3 years ago. Since then the ELC has grown from a few people with a general idea that we needed to do something to help give back, to an organization that has developed, staffed and planned events.
My involvement with the MS Society has evolved as well, progressing from a child reading books for prizes, to a member of the ELC, to the chair of the ELC and finally to a board member and as of next year Vice Chairman of the board. Each stage providing me with a renewed commitment to helping those with MS live out their dreams and finding a cure.
This year, the ELC has created an entirely new event. On November 18th, the 2011 MSQuerade will be held at the Queen Theater. Our goal is to raise awareness and reach a broader audience of people that have the energy and commitment to help those that need it. Most importantly, we want to provide a fun night out for the friends and families in our community who have MS or know someone that has MS. I always said that my mom liked a good party – so what better way to give back than to put on the biggest party of the year in honor of people like her, that continue to live their lives to the fullest in spite of any obstacles that have appeared in front of them.
Our dream is to help bring some of the little freedoms back to those that need it most and to someday prevent them from being taken to begin with. I am not sure if we will find a cure or a vaccine in the near future, what I do know is that without funding and your support we never will.
I sincerely thank you for supporting us in our effort to make the lives of those with MS and those who have family and friends with MS, a little bit better…It means a great deal to me and to my family…
More information about the MSQuerade can be found at www.msquerade.org. Ihope to see you in November…