MAKING MEANING WITH MS

Featured in Healing MS, Spring 2022

My journey with MS began in the 1970's. I was 28 years old. I was wearing Dr. Scholl clogs for those of you who are old enough to remember them. One assumed a shoe named for a doctor must be comfortable and healthy but it wasn't the case. My right foot rolled over. I had a significant sprain. I was discharged from the ER with crutches which caused pain in my sides. A couple of nights later I got into a bathtub and immediately got out. The water was too hot. I realized I only felt the heat on one side. My right side from the mid-front to the middle of my back did not feel anything. My right foot and leg were numb. Over the next few days, I stuck pins in my leg to see if I could feel anything. I couldn't. My instinct was to blame the crutches though my nurse brain knew better.

Coincidentally, I cut my teeth as a nurse at The Neurological Institute at Columbia. My physician of choice saw me right away. I was diagnosed with MS.

My mother was diagnosed with MS when I was 7 years old. I came home from summer camp one day to find her in an ambulance. She had a grand mal seizure and off she went. She was hospitalized for 8 weeks at The Neurological Institute. One can only imagine what was going through my mind when given this most dreaded diagnosis. I inherited this disease from my mother and so what else did I inherit? I was married only 2 years. What did I do to my poor husband?

As it turned out, my course was manageable. My symptoms were annoying, inconvenient, and sometimes disturbing but never disabling. I had fatigue and balance issues, some falls, and a few fractures, and I've never known where my right foot is. In retrospect, when my ankle rolled, it was probably foot drop.

I managed to work as a nurse for over 41 years and never once called in sick. I retired. Then, after 2 years of an unrelated infection, I lost my long remission. I had 3 falls, the last of which was awful. I lost my confidence. Dr. Sadiq offered me medication and asked me to please consider PT, 2 things I always resisted. I am not very holistic. I did not think PT for balance was going to be helpful, and would likely be boring. I agreed to both because I thought it was insulting to ask a great and very busy doctor for help and not take it.

I've been working with Dr. Kanter for over 1 ½ years. He told me he was going to retrain my brain to improve balance. I didn't believe it but I owed it to him to try my best, given all he gave me. The exercises made me tired and insecure. Dr. Kanter had me push through that. I didn't like it. Long story short, I almost never look forward to going to PT but I always leave feeling happy that I went. My balance and fatigue are better and my confidence is back. A nice extra is that sometimes we just talk.

Last August, at age 72, I took myself out of retirement and went back to work. Dr. Sadiq said to me, “Do you know how hard it is for a nurse your age to be hired?” It made me smile. I'm still smiling. I am forever grateful for EVERYONE and everything that the IMSMP has invested in me. It's a joy just to be there, even with an IV in my arm, surrounded by such dedication, intelligence, and caring.