For the first 19 years it was practically invisible. If you saw me on the street or worked with me every day, the only way you would know that I had Multiple Sclerosis is if I told you. All the drama was happening back-stage. That is until I was forced out of the closet and took position near the footlights. Though I was afraid of how the future of my MS would play-out, I was surprised to learn that removing the cloak could be an empowering experience.
My MS debuted in 2007 on a train to NYC and it was a showstopper! “Amy and her walking stick: A new Tony Award winning tragic-comedy!” But the real show was 2 miles south of the theater district at New York University. I had been working at NYU for over 5 years and very few of my co-workers knew I had MS. I hated that. You see, I’m an everything-out-there kinda person. (see blog) It’s how I roll. It was so uncomfortable for me to be feeling all of these bizarre symptoms without anyone knowing what I was going through. I couldn’t stand acting like everything was fine.
So how could the worsening of my MS be an improvement from the invisible version? Don’t get me wrong; I was devastated when these new symptoms hit. Dizziness, bad balance and foot drop; my commute had suddenly become an obstacle course. With foot-drop those obstacles were often invisible to the random pedestrian and it would appear that I was tripping over nothing. Let’s just say I kissed a lot more NY sidewalks than any person should. The hardest part is that I had no idea if these symptoms would be permanent. The fear of uncertainty is an ongoing reality for all of us who are living with it. One thing I could be sure of is that these symptoms would change how I was seen from then on. My cloak that had kept me invisible for 19 years had disappeared. I had no idea what a relief that would be.
From that point on, my role at work changed. With my brand new visual announcement, I spent a considerable amount of time answering questions and explaining MS to my colleagues and co-workers. And many of the conversations went to the next level with more questions about the disease and my specific experience. What a great feeling it was to be out and educating.
These ongoing conversations had me regularly looking back. At 20 years old my diagnosis couldn’t have happened at a worse time. (Not that anyone who gets the news says, What a great time for me to be diagnosed with an unpredictable degenerative disease!) But MS hit me as I was going into my junior year of film school in Baltimore. I was transferring to a new campus, in a new city, where I knew no one. Making friends at this point in my life was more critical than ever. And as I did, I struggled with the right moment to drop the MS bomb in to conversation.
Just two years later, I graduated and moved to Miami. Being near my mom seemed like a wise choice considering the unpredictability of my tomorrow. I had never lived there, yet I knew it would be a familiar feeling ala Baltimore. (Lather, Rinse, Repeat) But this time was more difficult. I left my new friends and the comfort I found with them. They really got me.