My MS Story

Hi there. My name is Kyle and I am honored to share my MS story with you. It has been a very long time since I have thought about how this journey began for me but I will do my best.

First and most importantly, I am a mother of 4; Austin, Darren, Nicki and Garrett, who is the editor of this story. I am also an artist, dancer, sister, beach walker and nature lover. If you met me now you would have no idea that I have MS, in fact there are quite a few people in my orbit who have no idea. Lucky for me that my symptoms are so few right now that I often question if perhaps I was misdiagnosed, however, I continue to inject myself with copaxone three times a week because I don’t want to find out I’m wrong.

This is how my journey began. I was walking to my car and I had a sudden, strange sensation in my leg. It didn’t hurt but it was a tingling/burning sensation that was quickly traveling further up my leg with each step I took and I had a numbness on my jaw and face. I knew something was definitely wrong, called my doctor and he set up all these tests for me. First I went to a vascular surgeon and then a neurologist. The initial tests showed nothing conclusive and I might add that MS was very hard to diagnose at the time. It was more of a ruling out every other possibility. If it hadn’t been for a textbook remission of symptoms followed by a flare up which included tremors, a more intense tingling in my leg and face, when I walked I tilted to the left and the scariest of all for me was around 7pm my brain would shut down, I would slur my words, I couldn’t focus and the fatigue would be so intense I would have to go to bed. At one point I almost passed out while walking across the room which led to an ER visit. They admitted me and did a spinal tap and confirmed that I had MS.

I have to admit, I was scared. I was mad and resentful. How could I have gotten this debilitating disease when I was the mother of a child who had a disability and needed my care. How was I going to take care of him? I knew nothing about MS, I did not know anyone who had it and I had no idea how this would affect my life and my ability to care for my children. I had always been strong and pushed my own needs aside for others. This was my wake up call. I learned to rest when my body told me to rest, I learned to say no before my body told me no, I learned that if you don’t listen to your body, it will make you listen.

I spent three months relinquishing chores to my children. They would grocery shop, do laundry, clean up around the house. I have no idea what anyone ate for dinner during that time but I’m guessing a lot of boxed macaroni and cheese and sandwiches. What I do remember clearly is that I rested for three months, I healed, I started my Copaxone therapy and watched only funny movies. For three months straight I watched Dean Martin Roasts, SNL videos, The Court Jester and Seinfeld. The power of laughter should never be underestimated. It is healing, it puts life in perspective, and renews your spirit.

What I learned by taking that time to process, heal and honor my needs is that I will not let MS define me. I am determined to make a life that brings me joy, for appreciating the small things, for taking better care of myself, for exercising and eating healthier, and for laughing out loud.

It has been 16 years since I was diagnosed with MS. I started my own business, I love Salsa and Ballroom dancing. I walk regularly and do yoga. I love to explore new places and wander. I know I am lucky, I have relatively no symptoms (a tingling now and then) and I still take my injections three times a week. I am grateful my MS has not progressed and that I can live a full and rich life. I know this is not true for everyone.

I am so proud of Garrett and Sam and the team of MS4MS for their fundraising efforts. They are an impressive team!