For most, the idea of children with MS is unheard of. As devastating as it can be for an adult to hear those words – you have MS – in a child’s world those feelings can be significantly amplified. Briana Landis was only four years old when she received her diagnosis. At age eight, she serves as an advocate for MS patients, participating in various speaking engagements where she reminds patients of the importance in taking their medications. She also participates in various fundraising efforts to raise money toward a cure.
As a dancer, Carol Crawford Smith has always been known for her beauty and grace. Her professional experience in dance-theater includes a ten-year career as a soloist with the internationally renowned Dance Theatre of Harlem. When she was diagnosed with MS, not only was she unable to dance, but she was barely able to maneuver around her home. In spite of these obstacles, Carol still maintains a positive outlook on life and doesn’t let her diagnosis bring her down. Carol recently took some time to share with us her story of courage and hope.
The Montel Williams MS Foundation: What precipitated your diagnosis?
Carol Crawford Smith: In the Fall of 1999, I began experiencing extreme
fatigue. That January, I was heavy in production as a director, choreographer,
and dancer and demonstrated a combination while teaching a class and my legs
collapsed. Friends said it sounded nerve related so I saw a neurologist. I was diagnosed with probable MS. After that everything got progressively worse. By June my joints would lock and I had trouble walking, and by October I was using a walker. I received a definitive diagnosis in December 2000.
MWMSF: What was your initial reaction?
CCS: This is not happening. Am I going to die? I started to think that it
would simply go away. When I realized that it was not going away, I accepted
it as an experience that I would have to go through. It was part of my journey
in my life course. I never feel any fear or anger about it. I am very faithful
about always being strong and doing my absolute best.
MWMSF: Since your diagnosis, you continue to provide dance instruction at The Center of Dance in Blacksburg, Virginia. Why is it so important for you to continue having dance in your life?
CCS: I don’t think about it. I was born to be a dancer. Even if I’m not
physically dancing, I dance in my heart, in my mind and in my spirit. I have
learned a new way to take those steps, to engage in those movements. Dancing
is part of my life calling.
MWMSF: You were recently featured on The Montel Williams Show and on Extreme Makeover Home Edition (EMHE). How difficult was it for you to make such a private issue so public?
CCS: It was a big question. A friend of mine encouraged me to submit my story
to EMHE because my studio was in poor condition. I was hesitant because I am a
private person but I had to let my pride down and did it. Since coming forward
with my story, I have received positive feedback from others who have been
inspired by my spirit and determination to keep going. This made it
easier for me to share my story with The Montel Williams Show.
MWMSF: Your diagnosis has led to many changes in your lifestyle. How have you managed to maintain such a positive spirit?
CCS: I am determined to not let it get me down, to flatten me and make me feel
hopeless. I still have so much that I can give to others. That part of me is
very strong. I never ever felt like giving up. I learned to say no and be
more selective in what I do. I don’t feel obligated to do everything I am
asked to do. I am also a very strong Christian and it keeps me going. Because of
my faith there is nothing that I can’t work through.
MWMSF: What advice do you have for those who are struggling to accept their diagnosis?
CCS: Never let anyone including yourself stick a thorn on your condition. Every
day say something positive to yourself out loud. Remind yourself that you are a
strong person who is redeemed. Think of your diagnosis as an experience – part
of your journey – not a death sentence. When you ache or can’t move, close
your eyes and think about yourself moving, walking and being happy. See
yourself dancing or doing whatever it is that you love. I see myself dancing
all the time. Because I see myself this way it exists for me and will always
exist for me.
Jeffrey N. Gingold, from an excerpt of Facing the Cognitive Challenges of Multiple Sclerosis* [Demos Medical Publishing, 2006] People who are diagnosed with multiple sclerosis are initially concerned with the possibility of disabling physical symptoms. Without warning, however, more than half of them may also be affected by cognitive challenges. Despite being confronted by optic-neuritis, numbness in my limbs and stumbling to maintain balance and equilibrium, giving up on myself is not an option. By maintaining my workout routine and keeping my body in good shape, I wanted to stay mentally focused and physically active.
In the frigid air at the Olympic Training facility of the Pettit National Ice Center, rigorous speedskating continued to provide me with a powerful workout, pushing back against the multiple sclerosis hammering my mind and body, without concern of overheating. Inside that frozen oval was an endless stream of white ice flowing along straight-aways and slicing cross-overs. My hooded full-body racing "skin," streamlined sunglasses and tautly lashed Viking blades were the uniform to focus my thoughts and air-stream my body. Shifting body weight in-sync with razor-sharp blades cutting smoothly into the ice sharpened my thoughts, thoughts fixed on sensing the edge of the blade holding the ice. It required physical stamina and a keen perception of the body mechanics to sustain the frozen rhythm.
One day, I arrived early to enjoy some quiet ice time before the other speedskaters and their coaches arrived. As I pulled off my skate-guards and the Zamboni finished smoothing the ice, I realized that I was alone - just me and the glistening ice.
After several laps, I felt a presence directly behind me, following me within inches. Unable to glance side-to-side during my warm-up laps, I didn’t notice anyone preparing to jump onto the ice. But someone was drafting me in a pack-style of skating, riding close and enjoying reduced air resistance sliced opened by my body breaking a path. Mirroring my skating stride from inside the pull of the vacuum air, the ghost speedskater benefitted from using less exertion to cover the same distance.
Drafting is common in speedskating, running and Tour de France races. Saving energy while working on technique prolongs strength and duration of the workout. Managing my mental and physical energy is the same strategy for living with MS and drafting speedskaters. It never meant giving up on myself. Shadowing the rhythm of my alternating strokes and breathing, the unknown skater was especially skilled at the drafting technique and made no discernable sound. Someone was there, but turning my head to peak behind me would break the cadence, potentially leading to a stumble, collision and a crash pile. Always concentrate thinking forward.
After the next curve, I pointed away with my right hand, signaling that I was slowing down and pulling out of the inner lane to cool down. Standing up and glancing over my left shoulder, our eyes met for an instant before she pressed on alone.
It was Bonnie Blair, a five-time Olympic gold medalist.
Fortunately, I didn’t know it was Bonnie drafting behind me since my focus would have been shattered by pale efforts to mimic her world-class form, while privately praying not to wipe-out into her. Although I had drafted and been drafted by countless speedskaters, this was different. The unknown can be unnerving, especially when it is closely following you, but don’t be distracted or give up on your purpose.
MS was challenging my ability to walk, concentrate and think clearly. I could stop trying to be active and no one would blame me for sitting back, but it was a question of what else I could do to fight back.
Exercising in frosty air allows me to maintain my edge on the ice and sustain body strength. My speed may be slower and at times my balance strained, but I skate without glancing behind me and with MS, I don’t obsess about what I can no longer accomplish.
Although my courtroom loss of presence was an unanticipated cognitive symptom of MS and ultimately devastating to my litigation career, I re-directed my passion to assist others as a volunteer advocate for MS-related legislation [early MS diagnosis for indigent women and an income tax "check-off" to fund accessibility and mobility needs for MS patients]. The similarities between speedskaters and MS patients are strong. Focus should be maintained forward, while pressing to stay sharp and strong.
Like Montel Williams, I strongly believe that maintaining an active lifestyle may slow down the progression of my MS. If MS wanted to devastate the lives of two more patients, without resistance, then MS picked on the wrong two guys. This is why I support The Montel Williams MS Foundation, where 100% of donations are directed toward research for a cure. Together we will all defeat MS.
*A portion of your book purchase of Facing the Cognitive Challenges of Multiple Sclerosis through Amazon.com will directly benefit the Foundation.
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