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| 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.
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| 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.
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.
ReplyDeleteThat 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.
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