I used to be the world’s biggest worrywart. I could work up a good worry over anything, from the size of my thighs to the demise of mankind.
I’d like to say that’s all stopped. Alas, I still worry. But being diagnosed with MS in 2001 made me reconsider the role worry plays in my life.
Until then, I used worry as a kind of talisman, figuring (not quite consciously) that the act of worrying about something actually protected against that thing. Worrying would, in my superstitious mind, ward off any bad thing I thought to worry about.
I worried about contracting all sorts of dire diseases. But it never crossed my mind to worry about MS. So, while I was busy fretting about afflictions such as swine flu and cancer, MS snuck up and bit me in the butt.
I was terrified when I learned (after an MRI and a lumbar puncture) that I had multiple sclerosis, a disease I knew absolutely nothing about. So much for the protective power of worry.
Information, not superstition, is of course the best defense against blind fear, so I sought it where I could. Unfortunately for me, that meant surfing the Web.
Back in 2001, online information about MS was far more scarce, and far more scary, than it is today. I sure wish this blog had been there for me; I would have so appreciated the chance to see that real human beings like myself can live rich, happy lives with MS. Instead, one Website after another painted a grim, depressing picture of what likely lay ahead for me, largely because therapies that would help make MS a more manageable condition had only recently become available and hadn’t yet had a chance to alter the course of many people’s disease.
What the Internet failed to provide, my wonderful neurologist delivered. He helped me find the right therapy and got me started on it immediately. He spoke to me kindly but not condescendingly, telling me what I needed to know about the disease and its management. Perhaps most important of all, he helped me maintain a sense of humor about my situation.
My neurologist, my wonderful family and friends, my daily injection, and that sense of humor have all served me well over the dozen years since my diagnosis. I am so lucky and grateful to be able to walk the dog, go to the gym, ride my bike, do yoga for hours on end. I have a fulfilling job and a happy life – none of which I take for granted.
Today, with new therapies and improved understanding of how MS works, the outlook for many is better than it was even a decade ago, and Websites such as that of the National MS Society can offer plenty of helpful, even cheering, information for the newly diagnosed.
I am thrilled to have the opportunity to share my MS experience with others through this blog, and I hope that newly diagnosed people in particular will find encouragement in what I and my fellow bloggers write. And, to help ensure that new therapies will continue to be discovered and made available to people with MS, I am proud to declare myself an MS activist!
What does being an MS activist mean? Being an MS activist means that I will take every opportunity to stand up, tell my story and drive change. Hear that sound? That’s me, knocking on wood. I know that my disease could worsen, that my future could become far more problematic than my past twelve years have been.
But, you know what?
I’m not going to worry about that right now. I’m going to use my voice to make a difference.