A friend recently asked me what it felt like to have multiple sclerosis. We were sitting at the park watching our kids play, and we would have looked like any other suburban moms except for my silver walker covered with Spider-man stickers stationed nearby.
I did not immediately answer her question. How could I possibly explain how it feels to have a potentially disabling, progressive and incurable neurological disease? It has been 13 years since my doctor told me I have MS, but the answer to my friend’s question changes every day, sometimes every hour.
My MS experience reminds me of that famous line from the movie “Forrest Gump”: “Life is like a box of chocolates. You never know what you’re gonna get.” To me, having MS is like being forced to eat chocolates from a box that had all the good chocolates removed. Every chocolate I eat from the MS box is something I do not like, just like every MS symptom has the power to annoy me and sometimes even scare me.
Having MS means that I never know how I am going to feel when I wake up each morning. I have to plan around the whims of a body that no longer cooperates. The covering around the nerves of my brain and spinal cord is being slowly eaten away by my own cells, resulting in legs that no longer guide me effortlessly throughout the day. My legs are too weak for the long walks on the beach that I once enjoyed.
Having MS means I might wake up to a numb hand, an aching back or legs saddled by weakness, stiffness or fatigue. Mornings can start out with a big yawn because I was up four times the night before to use the bathroom; my stomach and ribs might ache because it feels as if a boa constrictor has been squeezing them. Most of these problems go away without treatment, but sometimes I will need a few days of intravenous steroids to help speed my recovery.
Having MS has taught me a lot about myself. I now know that I can be tough when the need arises, and that I should not worry about the future. Each day is a chance to feel stronger. Through my daily struggles with this disease, I am trying to show my son that the obstacles I face are not stopping me from living life.
Being diagnosed with MS when my adult life was just starting was a sad thing, but I am not a sad person. I am genuinely happy when I watch my little boy hit a baseball, when I have a “date night” with my husband or when a child I am working with begins reading. MS is powerful, but it cannot take these moments away from me.
Kimberly Zolotar is a wife, mother and legal secretary living in Rancho Cucamonga.