Three weeks after my skiing accident in Aspen in 1993, the fingertips of my right hand fell asleep. Three days later it was my whole hand. And after a few days, the fingertips of my left hand went numb.
I suspected that I had nerve damage from my accident, but then I lost all feeling in my stomach and my eyesight began to go. A neurologist gave me a series of MRIs and they showed up with multiple lesions or spots on my spine and brain. That can’t be good, I thought, but I also believed it couldn’t be that bad. After all, I had always been an active, healthy woman – I had a black belt in karate and I was a skier.
Then the neurologist gave me my diagnosis. “You’re in luck. You have a disease called MS or multiple sclerosis,” he said, adding that it could be worse.
I think that was a point of view. No matter what diagnosis I received, I didn’t think it possible that I could get MS: I was only 33 years old and in a bad marriage with three young children. I didn’t have time to get sick.
I got a second opinion and then went to see someone at the National Institutes of Health (NIH) the following week. In a state of denial, I traveled the country and visited various doctors. Their answers were all consistent, and eventually I had to accept my fate: I had MS and there weren’t any medications or cures that would make me better.
I soon learned that MS specialists across the country at institutions as high as Harvard were doing identical research with very few positive results. It became apparent that doctors often worked in a vacuum and that researchers were so isolated in their laboratories that they seldom looked at the bigger picture.
A lightbulb went out: I had to be healthy, and the only way that could happen was if the best and brightest researchers could get funding to work on new, innovative MS treatments – and if the requirement was for funding that they communicate with each other every couple of months and never duplicate their research.
The same year I was diagnosed with multiple sclerosis, I founded Race to Erase MS – an organization that raises funds for the most aggressive and cutting edge research. My goal for the organization was not only to find treatments to contain symptoms, but to find a cure for the disease that I and so many others had been diagnosed with.
I started the Race to Erase MS Gala Event, a ski event in Aspen. The opening event, televised by ESPN, brought together professional skiers and popular musicians of the time such as MC Hammer, Kenny G and Michael Bolton. We had a great time – in addition to gigs, we had ski races, a country western party, and a symposium with lots of MS doctors. Most importantly, we raised $ 1.3 million for the cause.
We’re now holding an annual gala, and the money we’ve raised has funded critical MS research and contributed to insights that have led to FDA-approved therapies.
No two people living with MS have the same symptoms, but the disease affects the myelin sheath, an insulating layer that forms around the nerves in the brain and spinal cord. The 15th drug we helped develop was a game changer as it helps stop nerve damage before it happens. And it’s not given off by daily shots or pills, but only twice a year through an infusion.
The future for people with MS was once very bleak, but now it’s exciting. Race to Erase MS moved its annual gala to Los Angeles, despite COVID-19 giving us new ideas for this year’s event. We did it in the Rose Bowl pop-up drive-in theater. We had a concert, a fashion show and a lot more and the guests didn’t even have to leave their cars! Seven doctors are currently relying on Race to Erase MS for their research studies, so I knew we couldn’t let a pandemic stop us.
I can’t let the pandemic stop me either. Seven months ago, on February 16, when I was out of town on a ski trip with my daughter, my 35-year-old son died. It was the worst day of my life.
My son always worried that I had MS, but more than that, he was my rock from a young age. He’s attended every Race to Erase MS event and had such a positive outlook. Sometimes when I was struggling with my illness he would break the ice with a joke or urge me not to stay in bed crying.
When it comes to treating the symptoms of my own illness, I don’t take any medication and live an active, healthy lifestyle. I don’t smoke or drink alcohol, take lots of vitamins, and work hard to strengthen my immune system. Maintaining a positive attitude also helps a lot.
When I was first diagnosed with MS, I loved people – I didn’t know how to say no. But I’ve learned how to avoid toxic people, and today, as much as I say “yes” to good people and causes, I also find it empowering to say “no”.
I think the most important thing I’ve learned is that helping other people will improve my MS symptoms. Stress can make symptoms worse, but there is a difference between good and bad stress. When I work hard towards a goal, endorphins are released. There really is no higher high than helping people.
This resource was created with the assistance of Biogen.