This week is National MS Awareness Week, and as someone with multiple sclerosis, I urge you to join me in recognizing it.
For 25 years, I worked as a photojournalist. I climbed mountains, walked foreign streets for hours, even visited war zones, secure in the knowledge my body would be up to the task.
Then in 2006, I was diagnosed with multiple sclerosis. Now I can't even commit to a lunch date without worrying I might not feel well enough to attend.
Though I'm luckier than many, my globe-trotting lifestyle is a thing of the past. I can't shoulder the weight of a camera bag. My eyes tire easily, sometimes refusing to focus, or seeing two when I know there's only one.
I wake up each morning with pain that starts out being simply annoying but by evening I can barely stand or hold up my own head.
Multiple sclerosis is a chronic, often disabling disease that afflicts more than 2.3 million people worldwide. An attack against the central nervous system damages the myelin (the fatty substance that surrounds and protects the nerve fibers). This damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a variety of symptoms.
The most common include vertigo, visual disturbances, chronic fatigue, muscle weakness and pain, difficulty in walking, and cognitive dysfunction.
Multiple sclerosis is a wily, bewildering affliction. We don't know its cause, and we don't have a cure. But finding that cause is an important step in stopping the disease.
To that end, research steadily marches on. Several factors suggest that an infectious agent may be involved in triggering multiple sclerosis, and just this month a team of researchers at Weill Cornell Medical College in New York City identified a toxin that they suggest may be just that trigger: Epsilon toxin, which is produced by a specific strain of bacteria (Clostridium Perfringens).
Whatever the cause may be, one thing afflicts each one of us with multiple sclerosis: As connections inside us break down, so do the connections between ourselves and the world outside.
As my disease progressed, I found myself missing the frequent openings, art events and gatherings that used to connect me to my world. But I adapted.
When I couldn't ride my bicycle or walk more than a couple of blocks, I bought a 50cc scooter that I call my mobility device. Driving my scooter gives me a semblance of independence. I feel like I'm taking my disability into my own hands, taking back at least a little bit of the control I feel slipping through my fingers.
Perhaps you know someone with multiple sclerosis, or you've heard about a friend of a friend, or a distant cousin, with the disease.
During National MS Awareness Week, please be aware of the person whose wheelchair you just made room for out on the sidewalk, or the one whose walker got in your way as you tried to race out of the subway.
Try making a connection. It just might make your day -- and our week.
Leslie Fratkin lives in New York City and can be reached at pmproj@progressive.org.
Copyright Leslie Fratkin