After 25 years with multiple sclerosis, I have re-defined MS as Moronic Situation, Modified Swagger, Magnificent Strength and Motivational Spitfire.
I got these various new perspectives on MS, but it didn’t happen overnight.
When I was first diagnosed with MS the day before I turned 22 I was frightened and angry. MS just meant multiple sclerosis, and I did not want to hear that I may have to modify my life in order to stay healthy and strong. At that time, my favorite things were the sun, the beach and hot tubs. I was resentful and definitely went through a period of denial. I didn’t truly start making modifications and adapting to life until I got pregnant with my daughter five years later.
When I was three months pregnant, my husband and I went to Aruba for vacation, and he thought it would be fun to go parasailing. I went up fine, but after being that close to the sun, my nervous system was fried, and my legs were spent. Once I was back on the ground, I was lethargic and couldn’t walk at all. My husband had to carry me ¼ mile through the ocean back to the beach in front of our hotel. Then, he had to find someone with a golf cart to take me from the beach back to our room. When we walked in our door, he helped me to the bed, turned the air conditioning on full blast and told me to rest.
I was still covered in sand and in my wet bathing suit, but I couldn’t move and didn’t have the energy to fight. I fell asleep and when I woke up a little later, my legs and my brain were back to normal. I was totally grossed out that I was in bed all covered with sand, and I was hungry and wanted to go out for dinner, but my husband was so scared that he wouldn’t let me leave the room again until the next day. It was a Moronic Situation but we both learned a lot about multiple sclerosis that day. We learned that we cannot ignore this disease, and we need to seriously re-consider when and where we go on vacation so the heat does not exacerbate my MS symptoms.
Although MS has affected my mobility, and I have a Modified Swagger, it has also given me Magnificent Strength to get through challenging times in life. Walking like a sloth and not being able to keep up with others physically has helped me re-define myself. I had to dig deep from within, but my feisty spirit was still there. I am no longer the stressed out, overachieving perfectionist I used to be. Now I consider myself to be A Work in Progress and a Motivational Spitfire. I have gained a new awareness and perspective that I am sharing with others. Being challenged with multiple sclerosis and learning to live with it has helped me figure out my purpose and passion in life. By living life a moment at a time and never giving up no matter how challenging my MS symptoms may be, I have been able to keep going and help others stay positive.
Playing the drums, which had been effortless and fluid, has become decidedly effortful and deliberate.