Monday, August 25, 2014

Why I dumped a bucket of ice water over my head today

Last night my sister-in-law and her husband, Judy Lynn and Ray Almond challenged me to dump a bucket of ice water over my head, and I accepted the challenge, willingly. Those who know me may be shocked. I guess I’m probably seen as a wimp by most people. Yes, I was hoping that today would be scorching hot so that the water would actually feel good, but even though it’s actually cool today I was still excited to do this. Why? Let me tell you about my other sister-in-law, Kay Carlile.

I’ve been married to Kay’s brother, Alan for 26 years. For the first 20 of those years Kay was a force to be reckoned with. Kay had the three E’s: energy, enthusiasm, and example.

She couldn’t stand to not be busy. When the work ran out she had to find more. Maybe that’s part of why she had seven children. Any time she came to visit I could give her some of my work to do, and she received it gladly. She was the no-moss-growing-on-me type. She made her own granola, and everything else.

Her enthusiasm for all the things she did inspired me to try some of those things out, too. She was the life of every party. My children loved to be around her and learn to play her games. Whenever we play one of her domino games, my kids all have to try to pronounce “chicken foot” with her Kentucky accent. That’s all part of our fun.

Her enthusiasm wasn’t just for fun and games; it extended to living the gospel of Jesus Christ in every way she could find. And that is one way in which she was an example. But the last legacy she left was the way she fought ALS, or Amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease. It is a progressive neurodegenerative disease that causes victims to lose control of their muscles, which then atrophy. But even after being diagnosed, Kay didn’t seem to slow down.

It started in one foot, as “drop foot”. Five years ago, Kay and her husband, Al, were celebrating their 50th wedding anniversary. My children and I drove up to Seattle to join the celebration. Kay wanted me to help her hang each of her children’s family portraits over the stairway in her entry, but she wanted new picture frames. So we ran all over town to get the right frames, Kay leading the way. I don’t know how she did it, except that that’s just the way she is. She kept it up longer than most people, and even after another 3 ½ years, she was still the life of the party at her granddaughter’s wedding reception. We had time to kill after the wedding luncheon, so she pulled out the games and we stayed in the banquet room all afternoon, having a great time.
The last time I saw her, she was in pain, and frustrated that she needed help just getting on to a toilet, or into the car. I’m sure there was much more, but she didn’t whine to me about it. In the end, she was blessed to slip away quickly. But most are not that fortunate.

According to the ALS Association, about 5,600 people are diagnosed in the US each year, and perhaps as many as 30,000 may have the disease at any given time. Compared to many other diseases, that’s a very small portion of the population. But to those who suffer, and their loved ones, it’s 30,000 Americans too many. And that’s where the Ice Bucket Challenge comes in. We need to raise awareness and money.

There are cures and treatments for cancer, but there’s not much out there for those with ALS. No cure, not even a test to diagnose it. It is diagnosed when everything else is ruled out. I believe in dignity, and telling someone it must be ALS because it isn’t anything else is no way to give someone a death sentence.

So, the Ice Bucket Challenge brings some fun to a disease that is no fun at all. I dumped the water over my head, then took a shower and dried off. I will send my money, but it’s not enough. The challenge has gone viral, and I hope the giving will too. Hopefully there are many out there who can afford to give hundreds of times more than the challenge asks. And hopefully even those who will never know anyone with this disease will be inspired to care enough to help. That’s what it will take, because drug companies can’t stay in business by dumping a billion dollars into a drug that has such a small market. Someone has to step up and fund the research, and this is my plea to that hero.

You can donate to the Walk to Defeat ALS and sponsor a member of Kay’s family here:

or, go to the ALS Association website and donate there: http://www.alsa.org/

 Click on the red “Donate” tab on their home page.

No comments:

Post a Comment