Talking About Your MS With New Friends
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.
Even during those invisible years in Miami, some symptoms made unpredictable leaps in to public moments. For instance, I was at a nice restaurant with a date when all-of-a-sudden I had an electrical pain in my face. It was hard to pretend all was well when I yelled and grabbed my chin. The sudden silence was broken by the sound of forks and knives hitting plates. So, on the fly, I came up with a ridiculous comment that I used to fill the awkward moment. “Nice weather we’ve been having...”
And I’ll never forget the time I was walking on the beach with a new friend and my leg went numb. Suddenly my gait resembled that of the Mummy. We were in the middle of a light conversation and it wasn’t the right moment to unwind the gauze and start explaining. But when was that moment? I wish I had a sign or perhaps a label that said “Hello my name is Amy - I have MS” or perhaps a plane nearby trailing a message in mist: “Amy has MS ~ Just saying” At least I wouldn’t spend so much time wondering when I could tell and what I would say. It would give me an opportunity to talk about my MS and it might even prevent the “Don’t call me, I’ll call you” ending.
Back to the future: After relocating to NJ (my home state), I endured many new symptoms and increasing limitations. Some that left me no choice but to come out. It ultimately happened on NJ Transit when I premiered my walking stick (a term I find to be less geriatric than cane – Not that there is anything wrong with a cane!) I was hypersensitive to the reactions of my fellow commuters, whether real or imagined. But I jumped off the proverbial platform and got onboard. And guess what? It turned out to be not so bad; in fact it was interesting but in a good way. When it became obvious that I was dealing with more than the average commuter, people actually felt badly when they plowed me down during the mass exodus from Penn Station. They would even interrupt their own expletives to apologize. *
Of course the transition from invisible to visible was no easy adjustment. I took on the role of analyst. I started by closely watching the people on public transportation taking note of their reactions. (And BTW, I don’t recommend staring at people on the subway!) How was I treated differently? Were those subtle looks askance because my hair looked funny or was it that I was wearing white after Labor Day? No wait! It’s because I’m a young woman (42 is young!!) who can’t walk without added support.
At the time of my diagnosis my greatest nightmare was the thought that someday I might not be able to walk unassisted. I suppose the realization I’ve had puts me in touch with something I’ve always known. With my unpredictable version MS I have reinforced my ability to adapt. I have found a way to watch the play while being part of the production. And from that perspective I can deal with however the plot unfolds.
So, I think for me, one of the incredible things I have learned, in over two decades with this disease, is that you don’t know what you can handle until you do. This was never more evident than when I added this stick to my walking routine. And now I love it.
* This comment is intended as comic relief. It does not in any way represent most of the NJ commuters nor the residents of NYC. Many of them are very polite.