Sunday, August 24, 2014

Beyond the Bucket

Payne family
Unless you’ve been living under a rock for the past few weeks, you’ve heard about the ice bucket challenge.  There’s even a good chance you have dumped a bucket of cold water on your head.  This has all been started in an effort to raise awareness of ALS and money for research for a cure.  And it is working – as I write this, donations have reached over $70 million (compared with $2.5 million in the same period last year).  Currently ALS, or Lou Gehrig’s disease, does not have a cure, and most patients die within three years. 

I know personally the toll this disease can take not only on the patient but on the family.  About ten years ago I met the Payne family.  Marcy, the mother, had ALS.  At 37 years old, Marcy was running (and winning) 5 and 10K races.  She had a 6-year-old daughter and 11-year-old son.  In August of 2000, she was diagnosed with ALS.  In October of that year, Marcy resigned from her executive director position at Happy Tales Humane – the no kill animal shelter she helped start in Franklin, TN.  She stopped walking in 2001, had to get a feeding tube to eat in 2002, and from March 2003 until her death in October 2010, she was a quadriplegic and on a ventilator in the family living room at home. 

Darcy and me
When I met them, Marcy was already a quadriplegic.  Her daughter, Darcy, had just started middle school.  I became like a big sister to Darcy – we went back-to-school shopping, planned Christmases and birthdays, I cheered her on at soccer, and attended her middle school graduation.  Although Marcy could not speak, she still had a very healthy influence on Darcy.  I can remember one time as Darcy and I were leaving the house, she went to kiss her mother goodbye.  While they were communicating (she used eye movements), Marcy told Darcy to “eat her vegetables”.  

Marcy was a strong, loving, vibrant, courageous, funny, fiery red head.  Though Marcy never physically spoke a word to me, those qualities were evident.  I didn’t know Marcy before, but those that did would agree that ALS did not affect her personality.  Since meeting Marcy, I have had days where I was feeling down – emotionally or even physically.  But Marcy gives me inspiration to push through and be strong.  How can I complain or be lazy when my body is capable of so much more.  How can I take my body and my health for granted when Marcy wanted nothing more than to stand up and hug her daughter?

I cannot tell you exactly what Marcy would think about this ice bucket challenge phenomenon.  But, I do think she would find it amusing and be grateful for the awareness and money it is raising.  But I also think she would be practical and want something even beyond the bucket.  Once you dump the bucket over your head, don’t let it simply be a memory or a funny video clip.  I challenge you to take advantage of your healthy body and make the best of it.  Run because you can.  Eat your vegetables because you can.  Many who are fighting ALS cannot.  Take nothing for granted.  Prevent what you can.  And honor those with ALS by taking care of your healthy body.

There may not currently be a cure for ALS, but obesity and the related health risks are 100% preventable.  Don’t take that for granted.  To see how I will educate, encourage, and motivate you to go beyond the bucket, go to


  1. Nice, Dyan. One of the artists our social enterprise represents has autism. Her name is Erin Brady Worsham. Her stunning computer art is created with an electrode attached from her forehead, which she can move, to a laptop.

  2. That is amazing! Marcy used a computer briefly that traced her eye movements to create words and sayings. But, it became increasingly difficult for her to control - she would accidentally "say" "I love you" randomly, which is actually super sweet. But, the family used their own language where they would go through the alphabet until they reached the letter she wanted and she would raise her eyebrows. It was a very lengthy process, but worked for them.