My sister-in-law Nancy was one of those spark-plugs: vibrant, upbeat…grass didn’t grow. You know. For years she chaired an annual event to fund a large senior center, she rollerbladed several times a week around one of the Minneapolis lakes, had two kids and managed to work.
Whenever I think of Nancy in those days, I think of this spunky brunette, maybe five-foot-two, in bermuda shorts and tennis shoes, with her car keys in hand ready to shoot off to the next errand. "Okay, guys, let's go." Her mantra .
Then eighteen years ago, it hit. This slow, devious disease of Multiple Sclerosis (MS). It stops people from moving by interrupting the flow of information between the brain and the body.
For Nancy, it began with temporary loss of vision in one eye which occurred again a couple years later. She was still able to work, keep up many of her activities and even drive. Her children were then 8 and 11.
But the disease progressed, producing difficulty with movement, then balance. And slowly her mobility, and with it, her independence, ebbed away.
For Nancy's 50th birthday, her daughter came home from college. “Get in the car,” Nancy told her. “We're going somewhere.” Despite Sari's pleadings, her mother wouldn’t tell her where they were headed. When my brother pulled up an hour and a half later at a tiny rural airstrip, Sari understood. "NO! WE'RE NOT GOING SKYDIVING!" she yelped.
SkydivingBut sure enough. That was what Nancy chose to do for her 50th birthday. And she did. She made that dive (with an instructor, thank God.) Even I , though relatively able-bodied, wouldn't have done that. And she even pursuaded Sari to do it with her. My brother calls this a testament to her passion for life and her resistance to being beaten down.
But even those days are gone. Today, she uses a walker, and her vision is impaired. She tires easily and requires assistance several days a week. She speak slowly, sometimes grasping for words (who doesn’t), but her mind is sharp, and she remembers things I have long forgotten. And she knows only too well what she now cannot do.
She and my brother moved out of their beautiful home a couple of years ago into a condo that he specifically designed to meet her present and future needs. Yet a few months ago she fell against a counter and broke several bones in her nose. You try, but you can’t control every minute.
Fundraising Cousins Dannon and Marli
And so we walked. In May , for the annual National Walk MS. I went to Minneapolis to take part. Nancy’s son, my nephew Dannon, raised the largest amount of money for the MS Walk in the Twin Cities of Minneapolis and St. Paul: more than $17,000. My daughter, Marli , also came in town from Tulsa, OK, where she is doing a year-long Federal Court clerkship. She raised over $1000 online.
We were joined by her elderly parents and it touched my heart to see them having to support their daughter in her wheelchair. Also on hand were her sister, cousins and about 40 others for Team Nancy, and hundreds more who walked for MS beneath threatening skies by the historic Minnehaha Falls and along the Mississippi River. Nationally, the 2012 Walk raised over $50 million to combat the illness.
I haven't been on many of these expeditions, but this one was very well-organized. Vendors showed up with huge catering trucks dispensing hundreds of sticky buns, donus, fruit, coffee, hot chococate and other treats to the marchers. There were the ubiquitous booths and tee shirts and balloons, and a general sense of celebration, trying to rev up spirit for those combatting or having a loved one who's combatting such an odious disease. The wish is to overcome, to find THE cure. As if our collective wills would make it happen. But for me there was an underlying sadness about the unpredictiblity of life. If this disease could cut down my vivacious sister-in-law who among us is safe?
In the couple of hours or so it’s taken me to write this, two people were diagnosed with MS. It affects approximately 400,000 Americans .
My daughter, me, Nancy and my brother BobMS is an auto-immune illness that attacks the central nervous system. It wears away the myelin, the substance that surrounds and protects the nerves. Symptoms vary greatly from patient to patient and over time, from numbness and tingling, to blindness and sometimes paralysis. Though it’s an equal opportunity disease, more than twice the number of women than men get MS, and it is more common in those with Caucasian European background. Though not hereditary, investigators are researching genetic dispositions.
There’s progress with new drugs in research. Stem cells may provide some answers. Trials of all these things continue, many financed by these monies raised by the National Multiple Sclerosis Foundation.
But statistics don’t tell about the impact on lives. A few months ago when my brother and Nancy were visiting me in California, I heard a thud behind me. I turned to see that Nancy had fallen while silently trying to get from one place to another with her walker. She was quite complacent about it, saying it happens often. Even though she’s slight, I couldn’t get her up alone. By the time I had gotten my brother, she had managed to pull herself onto a chair. This is spirit. But it is also what tears your heart out.
Team Nancy
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For more information or to contribute, visit www.nationalmssociety.org. or wwwmsfocus.org