MAKING MEANING WITH MS

Featured in Healing MS, Summer 2018

I met Dr. Sadiq when he was at Columbia Presbyterian Hospital. I had been given a “probable MS” diagnosis that I couldn’t accept. It was only when Dr. Sadiq confirmed it that I finally realized my life was changing. I resisted treatments at first but soon trusted his judgment completely. With his help and the support of other doctors, relatives, friends, and even strangers I have been able to continue my career as a violinist.

I’m writing this while on vacation in Croatia and Bosnia. I have a wonderful therapist who has taught me the value of vacations. During my career, I traveled all over the world with my orchestra, performing on five continents. However, having MS legs, and no tour manager along for support, the thought of traveling alone brings up intimidating images of mile-long airport connections, old cities with hundreds of stairs and uneven cobblestone streets, as well as intense heat with no air conditioning. As the departure approached, I got very anxious about all the details and worried about my ability to cope with the unknowns. Perhaps a “staycation” would be more fun. My friends helped by encouraging me to try something even if it may be uncomfortable at times.

I signed up for a vacation of long distance, open water swimming in Croatia. I’ve been working with IMSMP physical therapist Dr. Kanter and he has been a great help to me with his insights, exercises, and gadgets for assistance. He encourages me to have goals. What better motivation than the need to keep up with other swimmers in a non-competitive setting? It meant I had to get my swimming in really good shape starting months ahead. That process turned out to be fun and stimulating. If I turned out to be too slow to complete the group swims, I had still gained a tremendous amount through my training. I now hope to participate on Team Tisch MS as a swimmer.

Swimming gives me a welcome chance to have an intense workout without the frustration of having my leg stiffness and fatigue bring me to a halt. For swimming long distances, my legs are not really needed; using them eats up too much energy. What a perfect sport for me! On this vacation, our swims were along the shores of deserted Dalmatian islands. It was a team effort, with support from other swimmers. We crossed from one island to another with only the deep blue beneath us. What a thrill to have a chance to explore this way, something I used to love when I was a hiker. It felt daring and challenging.

We stayed on a small island with two quaint villages and no cars. It sounds perfect unless it’s very hot and you yearn to get to the other village. It was here that I discovered the miracle of precooling. A long dip in the cold ocean and— voila!—my legs worked in a way I’d almost forgotten about. I walked easily to the other village for lunch. Another dip after lunch and I walked back briskly despite the heat. How simple. Now how can this experience transfer to NYC? Air conditioning and cooling vests don’t seem to work the same way.

Sometimes accepting a stranger’s help can lead to unexpected connections. I have some trouble getting in and out of the ocean. On a rocky beach, I asked for assistance from strangers sitting on their towels. After I finished my swim, they jumped up to help me out of the water and I was surprised to see that they were covered in green mud. They urged me to try their green spa-like paste and we sat together chatting while it dried, allowing it to give its medicinal effect. I wish I had a photo of us four Martian bathers.

The IMSMP community of doctors, staff, and patients has been an enormous inspiration to me. Dr. Bates has helped me adjust my diet, and a surprising result is that my bathing suit fits better. Thank you, Dr. Bates! Urologist Dr. Grafstein’s tireless help has given me greater control and more confidence. The last Tisch MSRCNY Symposium stressed patient participation in dealing with your MS. For me, that includes learning to plan ahead, creatively negotiating “make-arounds” to avoid difficulties, and accepting assistance. I can still have a lot of fun in the slow lane, with a little help from my friends, family, therapists, guides, other swimmers—the list goes on and now so will the traveling!