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In past blogs I have confessed that while I appear to be strong on the outside, I am filled with all kinds of fears on the inside. I know that this is going to sound a little strange, but as a child I worried that some day I would get multiple sclerosis. Now this fear did not come completely out of nowhere. My best childhood friend Brett's mom went from this feisty German dynamo to someone who could not even climb the stairs in her own house nor care for her everyday needs. It was horrible to watch and I honestly could not think of any more horrible way to go...that is until I was introduced to ALS.
Not many people know this about me, but before I decided to become a teacher, I actually received my degree in Communicative Disorders (also known as Speech Pathology). As part of my training we had to work with cadavers to identify all the muscles and organs that contributed to the speech process. One of our cadavers was a man who had been afflicted with ALS, and this was when I was introduced to a fate worse than dying due to multiple sclerosis.
Basically this man's body was missing many of the muscles we assume we are never going to lose. It looked as if someone had ripped a large rectangle of flesh and muscles from his back all the way from his neck down to his tail bone. Now I had something new to fear. I know, irrational, but I have never claimed that my fears were based in any kind of reasonable thinking.
In the years since those cadaver lab days, Sean and I have both personally known people who have contracted and died due to the affects of ALS. I have had two colleagues who have lost their husbands to this horrendous disease, and about five years ago Sean's cousin lost her husband Cal to this disease.
When Cal was first diagnosed, they had just built their dream retirement home on a lake in Canada. The irony was that this house had several steep sets of stairs leading from their driveway down to the house and lake below. It wasn't long before his muscles began to fail and there was no way he could sit up and feed himself let alone climb those stairs in their dream home. He passed away not long after his diagnosis, and that short fight was honestly a blessing considering what he went through in that short time.
As this ALS ice bucket challenge goes viral, I inevitably got challenged, and I have to say I had mixed feelings. I love the attention that this challenge has brought to this disease that tends to get little notice, but I wonder too if the challenge has become more of fun thing to do and that some are forgetting what is behind the challenge. And then my daughter showed me a video of Anthony Carbajal who puts a face to the ALS challenge. She and her lifetime best friend actually watched some of this videotaping because Anthony lives next door to her friend. His perspective on the challenge is that any kind of attention is good attention, because it brings awareness to a disease that does not get as much research focus because it afflicts so few people.
Anthony Carbajal Murrieta ALS video
So yesterday I was challenged to participate, but being in Montana dropping my daughter off for her first year of college made finding a bucket and ice a little more difficult. Today as I ran along the river that runs through her college I decided to take my own twist and instead of bringing the bucket to me, I decided to bring myself to the "bucket" and dunk myself in the river itself. At the end of our run I walked, clothes-and-all, into the icy Clark Fork River. Sean and I will be donating to ALS (link to the ALS Association), but this is where I have to challenge others. Instead of picking three people, I challenge all of my readers to donate to ALS research. I honestly don't care if you douse yourself with the icy water, but I would love for the outcome of this viral challenge to be that they finally find a cure for ALS in the near future. No one should have to face such suffering, and I hope that as you get out there and play this weekend that you remember to be thankful for the fact that you are healthy enough to continue to do what you love and what makes you happy.