1993 was a normal year. I was a 20-year-old classically trained opera singer with a normal life. I was a tall female, and it always seemed like I was getting the short end of the stick in relationships. I didn’t know it, but another short end of a whole new stick was heading my way.
In December, my left arm went numb. Blood tests, an MRI and a variety of other tests were performed. Brain cancer and Lou Gehrig’s were offered as possibilities, but nothing certain. Advice was to observe and watch. For two years, there were no additional symptoms, which put me in the persistently uncertain world of “no news is good news.”
Christmas of 1995 arrived. I was preparing to go on stage to perform Handel’s Messiah. I learned the day of the performance that medical experts had concluded the only remaining possibility was multiple sclerosis (MS). As I sang that night, I pretended not to know, but with this answer, the grief-stricken process of acceptance began. I was only 22. I had never done anything wrong. Adult life was just starting for me, a life I had diligently prepared for. And now this.
I entered a state of denial. I grieved the loss of a full life, the old path of life I was on – fighting with God and fighting the world had been replaced with fighting this invisible intruder.
My friends had begun to marry and travel the world. Who would choose to be with me? For the next two years, I would sit in the shoe section of New York city department stores, holding 5-inch heels in my hands, feeling anger from looking at other women freely choosing shoes of their liking and grieving, wondering what had happened to my old life. My parents did not give up. They kept pushing me to achieve my dreams. My dream was to pass the Series 7 investment securities exam, which would license me for a career I wanted. Thanks to their continued belief in me, I sat for that exam a month after I was diagnosed and passed.
Within two years of diagnosis, a spinal cord lesion caused an extreme exacerbation. All feeling and function on the left side of my body disappeared, never to return. In a bid to stave off future problems, terrifying, regular self-injections became part of my life. I wanted my old normal back. By 2007, foot drop was an additional constant condition. In time, an ankle-foot orthosis (AFO) became a part of my daily wardrobe, providing the needed stability to move.
My role models became Annette Funicello and Richard Pryor. Annette began her career as a child performer at the age of 12 as an original Mouseketeer in the Mickey Mouse Club. Richard was a storyteller, becoming one of the greatest and most influential stand-up comedians of all time. Annette and Richard were diagnosed with MS at the ages of 45 and 50 respectively. They continued to live out their talents and passions, giving me the courage to do the same.
Five years ago, my AFO provider (Hanger Clinic) introduced me to Cheryl Hile. Cheryl has lived with MS since 2006. In 2017 she ran a marathon on every continent in one year. Based on her example, I adopted a mantra of “be bold, live the life you are born to live – unapologetically.” I now exercise regularly. I have never seen myself grow so much. I joined Cheryl’s “Run A Myelin My Shoes” team (RAMMS) last year and participated with them in the Richmond Marathon event in November 2019. I finished a custom-designed one-mile course. A TV camera was there to capture my finish. Next year, I plan to participate in the New York City Marathon, aided by multiple guides.
Finishing medals associated with such events have become my new 5-inch heels. They represent the intersection of what is possible, hope and independence. They have restored my confidence. Today when I sing, feelings of passion, perseverance, power and courage flow through me even more.
My fellow MSers - get out there, make yourself active, live the life you were born to live. Follow your dreams. And have fun.
I would like to thank my “guide” for the Richmond event, Lucas – husband of RAMMS team member Elizabeth. You are my hero, Lucas. I am so grateful for your willingness to accompany me, side by side, to the end of the event. Every step of the way you kept me from frequently tripping. You contributed to my life by helping me achieve one of my dreams.
Run A Myelin My Shoes
RAMMS was formed in 2018 to participate in the Detroit Marathon with 96 members across 16 countries and 25 U.S. states participated. In 2019, the team participated in the Richmond Marathon, where 287 members from 12 countries and 44 U.S. states participated. Plans are underway to participate in the November 7 Indianapolis Marathon (which has 5K, half marathon and full marathon options) for 2020. If necessary, we will postpone this to Indianapolis marathon November 2021 or an alternate event in the same calendar year.
RAMMS team-members can participate in-person or virtually. A RAMMS team-member can either be living with MS (our “MS Warriors”) or be a supporter of those living with MS (our “support heros”). The RAMMS team can provide physical assistance when needed, such as pushing a wheelchair or working with event staff to design a route of whatever distance you can accomplish. If you are interested in being a Warrior or Hero either in-person or virtually, contract us at the email below.
The team is on a mission to show the world what is possible with MS and to give the newly diagnosed hope. The only qualifications for membership are a desire to have fun and an aspiration to RAMMS through barriers put in our way by MS.
Please send an email to firstname.lastname@example.org to learn more.