By Janice Dean
I had my first Multiple Sclerosis (MS) episode in 2005 (the formal diagnosis would come later). Naturally, I remember it well: we had just come off the most active hurricane season in history. It was the year of Hurricanes Dennis, Emily, Katrina, Rita and Wilma. We had so many storms, the National Hurricane Center went to the Greek alphabet because we had run out of names.
I was working long hours that fall and was feeling overwhelmingly tired, stressed and depressed from all the devastation we were seeing on television. Little did I know that as I was warning people of the next hurricane, my body was dealing with its own neurological storm, one that had been forming for years.
I took time off and decided to go back to Canada for a week with my boyfriend Sean. The first day of my vacation I woke up to numbness in my feet and parts of my legs. I felt like I couldn’t get out of bed. I had no idea what was wrong.
I went to a doctor in my hometown to see if she could figure it out. She was blunt and honest. “This could be anything from a slipped disc to multiple sclerosis. You should get back to the U.S. to see a neurologist.”
I thought she was crazy. MS? Isn’t that the wheelchair disease? I took her advice, though. When I got back to New York I went to a neurologist who gave me MRIs and a most unpleasant spinal tap.
I remember calling Sean in tears and telling him that he needed to pick me up at the doctor’s office; the news was not good.
I had lesions on both my brain and spine. The spinal tap fluid had also shown the protein they look for in MS patients.
He gave me steroids to help with the numbness and tingling and told me I more than likely had multiple sclerosis: an unpredictable, chronic, incurable and possibly disabling disease of the central nervous system that interrupts the flow of information within the brain and between the brain and the body.
I was at an age when most women who have the disease have already been diagnosed. How I got it was a mystery, and still is – though having lived in Canada (northern countries show a higher frequency of MS, likely due to less sunlight) and the fact that my father had suffered with acute rheumatoid arthritis may have both been factors.
After days of feeling sorry for myself, I decided I had to find people to talk to. Luckily, I knew someone at work who also had MS: Neil Cavuto. The Fox News and Fox Business senior vice president, anchor and managing editor had gone public with his illness (along with having suffered from cancer).
He told me to come talk with him right away.
I remember he kept a stream of tissues in motion, consoling me while I just cried and told him all my fears. What would happen to my career? My personal life? My self-esteem?
Neil calmed me down, promised me I was going to be OK and reminded me that I was working at a great company that would support us, even if that support included building wheelchair ramps.
I’ll never forget that day, and what Neil did for me.
Afterward, I tried to find more people to talk to who were living with MS. It was the one thing that kept me going – seeing others who were not just functioning, thriving.
In 2007, now formally diagnosed after a few relatively mild exacerbations, I decided that I would talk about my diagnosis in order to help others like me who had the disease. It’s never been my goal to be the poster girl for MS, but I do feel called to be someone who can help others identify, and live with, the disease.
Fast forward to now. I’m happily married (to the same boyfriend who was with me during my first flare-up and diagnosis) and have two beautiful boys. I’ve been working full-time at the same company for over a decade and I’m the author of a children’s book series about a frog who is a weather forecaster.
I’m not lying to you when I say I’m the happiest I’ve ever been. I believe part of the reason I am so happy is that I learned almost 10 years ago that your life can change in an instant.
Yes, I live with MS. And yes, I’ve been very lucky to have very few flare-ups since that diagnosis. There are ongoing reminders that my immune system isn’t the greatest, and I do know that this illness remains unpredictable (much like the weather I forecast) and can strike when you least expect it.
I don’t want people to feel sorry for me – this is bigger than me. If I can put a face on an illness that can help others who are diagnosed, then my openness to discuss this is all worthwhile.
But there is also bigger hope on the horizon for the 2 million of us who live with this disease. The medications are getting better and less intrusive. The fact that there are now oral treatments available is a huge step forward. For many of us, the painful injections are a constant reminder that there is something wrong with us.
I think we’re getting closer to stopping the disease in its tracks. I do believe there will be a day soon when having MS will no longer be associated with wheelchairs.
This weekend I will be the emcee for this year’s “MS Climb to the Top” event for The New York City – Southern New York Chapter of the National Multiple Sclerosis Society. Over a thousand people will participate, climbing 66 flights of stairs to from the ground floor the Rockefeller Center observation deck.
It’s a fitting event where people from all walks of life will take part to raise funds and awareness for those of us who live with MS. The climbing can be tough at times, but with support from others, we’ll get there. And when we do, we’ll be stronger in ways that we never imagined.