MAKING MEANING WITH MS

Featured in Healing MS, Winter 2019

I was a wife, an orthopedic physical therapist in a busy practice, and I had a 2-year-old and a 6-month-old at home. I was nursing my 6-month-old when I noticed my entire left arm was numb and my hand was not working well. I also realized the left side of my face and my left leg didn’t feel right. Must be the long hours of caring for a baby while in uncomfortable positions, right? Nope, not right! I had multiple sclerosis! The diagnosis came quickly and with the force of a freight train. I was knocked down, to say the least. I was so overwhelmed with the diagnosis that I couldn’t eat, I couldn’t sleep, I couldn’t think straight. I could not function as a wife or a mother, and I certainly could not return to work and take care of patients. 

I was fortunate to have a mother-in-law who was familiar with the IMSMP and I was able to consult quickly with Dr. James Stark. Upon meeting Dr. Stark I let out a huge sigh of relief that I didn’t even realize I was holding in. His initial words to me were, “You will be ok!” Simple words, but mind-altering for me. Of course Dr. Stark delved into the diagnosis, the anatomy, and the treatments available, but he also spoke to me as a person and not just a patient. He knew my mind had gone off the rails and he knew just what to say to bring it back.  He also recognized that I felt alone and he made sure I understood that I was not. He soon referred me to his associate, Yadira LaMazza, Director of Social Work Services, and the IMSMP support group that she ran. I remember meeting with Yadira thinking, “I am not one to share thoughts and feelings” and that this would not be “my thing.” After a few minutes with Yadira, I couldn’t stop talking. I had held so much in since the diagnosis and I didn’t even realize it needed to come out. I started meeting with the support group once a month, under Yadira’s guidance, and my world began to change. I was able to sit in a room with others who knew exactly how I felt. Even though each one of us had a different presentation of the disease, we all understood the language we were speaking. We could “describe the indescribable” symptoms of MS and we all understood.  My family is amazing and could not be more supportive. However, they do not have MS. Those without multiple sclerosis listen and support, but can’t truly understand. That is why the support group was critical for me.  After each meeting with the group, I always felt better and it was mostly because I realized I was not alone.

I was also encouraged to meet with the naturopathic doctor, Dr. Deneb Bates through my support group. Dr. Bates had helped many from the group and I wanted in! Soon after meeting with Dr. Bates I was taking vitamins and considering food in a way I never had before. Through blood work, she could confirm that my anxiety and lack of energy was real. It wasn’t just “all in my head!” That was also comforting and helped me push forward.  Six months after my diagnosis I was on the right medication, I was talking freely about my diagnosis, I was living with my symptoms, and I was no longer deathly afraid. I was taking control of my life again and not letting MS define me. It was a struggle but I literally peeled myself off of the couch and forced myself to live. I returned to work and was present for my family. Focusing my attention elsewhere took my concentration off of my diagnosis. Not thinking about MS helped me deal with MS. The mind is a powerful force and I needed to learn how to positively channel my thoughts and energy. Yes, the possibility of the next MS flare is always lurking in the background but I don’t let the thought of it take center stage for too long.

I keep busy with work, family, friends, and I even find myself at the support group helping others cope and “not feel alone.” I needed to accept the diagnosis, understand the diagnosis, and talk about it. I might have multiple sclerosis, but I am NOT multiple sclerosis. I am so thankful to have been directed to the IMSMP. The doctors and clinicians there have helped me redirect my thoughts and ultimately my life. Help is available in many different forms at the IMSMP and it is there for the taking!