July 19, 2002
Just last week, my co-workers in the marketing department at Norton Healthcare gave me several compliments. One told me the lime green blouse I had on really brightened my face. One told me she liked my necklace, and yet another complimented the new makeup I was wearing.
My supervisor told me I did a stellar job on a project I had just finished, and I received e-mail from an internal client in another department thanking me for helping with a difficult and last-minute job.
Later that night, I went home and cooked supper for my husband and 5-year-old daughter and spent the evening after dinner reading books to my little girl, talking with my husband, and playing with our three dogs.
I might not be able to do any of these things tomorrow.
When people look at me, they have no idea that it sometimes takes me a half-hour to button my blouse, hook a necklace or apply makeup because my hands shake so badly in the morning.
Nor do they know that it is nothing short of a miracle, at times, to get out of bed every day and make it to work because of the severe muscle cramps, fatigue and vertigo I live with.
Most people I work with have no idea that deteriorating cognitive abilities cause me to be at a loss for words at the most inopportune times, such as during a presentation in front of a room full of physicians.
Although most people can claim that as stage fright, my incidences are much more severe, such as when I can't think of my own daughter's name or when I get lost going home from work even though I've driven the route a thousand times.
I pray every night that when I wake up the next day I'll be able to see my beautiful daughter's face or have the strength and coordination in my arms and legs to hold her and run with her.
The reality is that those things can be gone in an instant, at any time, any hour, any minute and for any duration -- with no rhyme or reason.
You see, I have multiple sclerosis -- MS. I've had it for 12 years.
MS is a chronic, progressive disease of the nervous system with no known cause and no known cure. It is not contagious, yet it affects about 2.5 million people worldwide.
Approximately one-third of a million people in the United States acknowledge having MS, and every week, another 200 people are diagnosed with the disease.
It usually strikes when people are in the prime of their lives -- between the ages of 20 and 50 -- and it does not discriminate based on ethnicity or gender, although people with Northern European ancestry seem to have a higher predisposition to the disease.
MS works something like this: The nerves throughout our bodies are covered in something called a myelin sheath. This is not unlike the protective covering on an electrical wire.
In MS, the myelin sheath becomes frayed because of a misguided immune system that attacks its own body.
When those frayed parts try to heal, the scar tissue, or sclerosis, interferes with the messages our brains send to the rest of our nervous system -- and just like that, a lot of screwy things start happening.
Relatively speaking, I'm doing very well with this disease. The symptoms I have are often sporadic and short-lived.
I am still ambulatory; I can still go to the gym and exercise; I can still work and enjoy my family and extracurricular activities. What I do not have is a body free of painful, annoying and cumbersome sensations.
For example, every day my hands are numb. Additionally, they often also feel as if they are engulfed in flames that cannot be diminished with cold water or ice.
Also, every day the soles of my feet feel like they are pierced with shards of glass, and the number and severity of muscle spasms in my legs, shoulders, arms and back are such that I am reduced to tears and often look like I have ping pong balls under my skin from the muscle contractions.
Two years ago, the left side of my face was paralyzed; I couldn't smile or close my left eye.
Twelve years ago, at the onset of the disease, I was paralyzed from the breast area down. I couldn't walk and I couldn't even feel my own need to urinate.
Of course, there are wonderful medications to help control or abate these symptoms and others to help delay the progression of the disease. I use some medications orally and another through a once-weekly intramuscular injection. But they cause many side effects, and they are very, very costly.
I do not have a typical case of MS because there is no such thing. This disease affects every person living with MS differently.
We might all share some of the same symptoms or we might experience symptoms that no one else has. Some of our symptoms come and go, while others may stay for a lifetime.
To me, the unpredictability of it all is the true cruelty of the disease. Such unpredictability led to the demise of my first marriage and often causes others to be pessimistic about the reality of my symptoms. People wonder: Is she really sick, or is she just faking?
But at the same time, the unpredictability has been a blessing in that it helps me keep a perspective on what is truly important in life.
When I look at the world around me and know that in an hour I may not have clear vision to see the faces of family and friends, or clouds, trees or birds, it certainly makes me value the world so much more. For that, I am very thankful.
I also am thankful for all those with whom I work who know about my MS and treat me with dignity and respect and without pity or condescension.
Further, I am thankful for the Kentucky-Southeast Indiana chapter of the National Multiple Sclerosis Society because it is working so hard, with a limited budget and limited resources, to educate people about MS, to offer support, assistance and comfort to those living with the disease, and to raise funds to help find a cure through research.
In the last month, I've joined the Kentucky-Southeast chapter of the MS Society's board of directors, and in doing so, I have seen firsthand how valuable their services are to people such as me and especially to those who don't have the support systems at work and home that I am so fortunate to have.
But so much more needs to be done, and you can make a difference.
If you would like to play a part in supporting the Kentucky-Southeast Indiana Chapter of the MS Society and help end this devastating disease that can literally strike anyone at any time, please call 451-0014 or visit http://www.kynmss.org.
Rita Hayes is a communications manager at Norton Healthcare Inc. in
Louisville. She also is a member of the board of directors of the Kentucky-Southeast
Indiana chapter of the National Multiple Sclerosis Society.
Copyright 2002 American City Business Journals Inc