Thursday, May 9, 2013

Not to Worry, My Sister, Not to Worry.

Not to worry.

I should have known that my sister, Nell Tredway Hardy, would use those three words in the title of her monthly column she's writing for our hometown newspaper.

I should have known because that's the kind of attitude she's worn as a badge of honor all her life.
The youngest of five in our generation, she earned the nickname Captain Zoom-Zoom as a little girl for barreling straight down the steepest of ski slopes, our parents watching in sheer terror. As a pint-sized equestrian, she commanded horses to thunder around cross-country courses and dance around a dressage ring. As a young woman, she scaled rock cliffs and submerged herself in caves -- both without a glancing thought to danger.

Nell raised three sons. She ran an eight-stall barn and worked full-time. She weathered an ill-fated marriage and fought back against the demons of an alcohol addiction.

And now my sister, 55, musters all the courage, determination and hope that she can, waging the biggest battle of her life against an insidious disease known as amyotrophic lateral sclerosis (ALS), "a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord." The doctor delivered the diagnosis over her cell phone one day in May of 2009.


She's well aware of all the statistics. According to the ALS Association: "Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time." The life expectancy of an ALS patient averages a measly two to five years from the time of diagnosis.

The barn -- it's sold now. The saddles, bridles, and blankets -- they belong to others. Her 13-acre horse farm -- she traded it in for a two-bedroom condominium.

Doctors performed a tracheostomy in January 2012. She takes her nourishment through a feeding tube. Her disease has rendered her limbs useless; her main mode of transportation now is a behemoth of a mechanical wheelchair. One blink of her eyes means yes. Ever-so-slight wags of her head mean no. She carries on conversations with her eye recognition machine, which allows her to peck out letters with her eyes. And she breathes every night with the help of a ventilator whirring by her bed.
And yet my sister tells us, and all those who read her column, not to worry. Nell's tentative plan of acceptance of ALS hasn't meant she's stopped living. In fact, she's more than alive. She's teaching us life lessons each and every day.

Supported by a cadre of RNs and LPNs, her family (including seven nieces and nephews), and more friends than she can count, Nell rarely stops. Since her diagnosis, she's been on four Caribbean cruises and flown cross-country to Los Angeles, where she realized dreams do come true when she met her hero, Ellen DeGeneres. At home, she relies on her Friends of Bill W. meetings to keep both her inner being and her life compass on track.

And every month Nell busies herself with her column chronicling her life with ALS. It takes her an average of 40 hours to compose about 600 words with her eyes on her DynaVox machine. She writes of her sons Brendan, Emmet and Connor; her dogs Shelby and Rico; her patience and introspective meditation; her firm belief that she will live long enough to see a cure for ALS.

So during May, ALS Awareness Month, let's pay special tribute to Nell, all the others living with this disease, and those who have gone before them. Think of them the next time you take a step. Embrace your child. Speak softly to your loved one.

Not to worry, Nell, not to worry.

A clinical editor in the health field for 15 years, Caroline B. Tredway has become a student on the subject of ALS since her sister's diagnosis. Nell Tredway Hardy is writing a book that will chronicle her life as a person with ALS (pALS).
For more by Caroline Tredway, click here.

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