Some Thoughts on ALS…and My Challenge to You

One of my dearest friends died last week.

He died of an infection that was an end-stage complication of ALS (Amyotrophic Lateral Sclerosis, better known as Lou Gehrig’s Disease). My friend was a vibrant man with a huge smile and a big “Hi, pal!!” for everyone. ALS took that wonderful vibrant man and shoved him into a prison it insidiously crafted from his own body – and locked the door. Because of ALS, my beautiful friend was trapped inside a gaunt, voiceless, motionless shell, hooked to machines, fed through a tube, with large unhealed and excruciatingly painful pressure sores – and completely unable to communicate. At the end, he couldn’t even move his eyes.

The true horror of ALS is something I’m not sure even the master of the genre, Stephen King, would be able to capture. There have been plenty of sci-fi/horror stories featuring individuals who are trapped alone – on an empty planet, a different dimension, a different time, etc. Mostly, these people are able to move around, because, well, what kind of story could you tell if your protagonist was unable to interact with his or her surroundings? What kind of story could you tell if your protagonist, trapped on this empty planet, had a black bag over his head that couldn’t be removed?

He was trapped inside the prison of his own body, with a black bag over his head. Was his spirit like a moth trapped inside a jar, battering itself over and over and over again on the impenetrable glass in frantic and fruitless attempts to escape… until the poor creature falls exhausted to the bottom of the jar and waits for death? Was his spirit like that of a man trapped underground in a lightless cavern or collapsed coal mine, possessed of his full faculties – and knowing that no rescue was coming…ever? That kind of horror is very nearly unfathomable…and that, reader, is amyotrophic lateral sclerosis. Imagine yourself locked within your own body with no way to communicate. Feel it. Sit or lie down, perfectly still. Got an itch? You can’t scratch it. Do you have a fold of your clothing pressing uncomfortably into your back? You can’t move to adjust it. Have a cramp in your foot? Nope, you can’t move your toes. After 15 minutes of that, I guarantee you’ll be exhausted. Now, imagine that feeling 24/7 for the rest of your life.

That is the true horror of ALS.

Fortunately, my dear friend was very much loved and was tenderly cared for around the clock by his wife and a team of devoted nurses. My friend was also visited by legions of his friends (I am fortunate to be able to count myself among them), and we all told him in every way we could how much we loved him, on an hourly and daily basis, as his ALS locked him away from us. We could hold his hand, and kiss his temple and smooth back his hair and tell him we loved him. At least ALS couldn’t take that knowledge from him. He knew how much he was loved…that one little candle in the darkness of his prison, burned brightly and steadily.

In the end, I think we were all relieved to see the end of his unbearable suffering. I think he too was glad it was over, and that he was finally released from the rotting shell his body had become. We are all so much poorer for his loss.

I hope I have conveyed to you the real horror of the disease that is amyotrophic lateral sclerosis. There is no cure for ALS. One in 50,000 Americans will be diagnosed with ALS this year, and their families and loved ones will have to watch them die slowly and painfully and be able to provide only palliative care.

That’s why we have the ALS Ice Bucket Challenge. It’s light-hearted and fun, and of course, there are some Scroogy folks who have bitched about it wasting water, but the Ice Bucket Challenge has raised close to $80 million dollars for ALS research since the challenge first went viral in in late July, 2014. And it continues to capture our imaginations and the donations continue to pour in (did you catch that pun…?).

If you haven’t donated, well, consider yourself challenged – you have 24 hours to donate to the ALS Association at alsa.org, or pour a bucket of ice water on your head.

You can do both if you want. I did. It’s quite refreshing. 

Thank you. 

Photo by Ramon de Ocampo

Photo by Ramon de Ocampo

 

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2 responses to this post.

  1. Posted by Andrea Drever on September 14, 2015 at 5:30 pm

    Thank you so much for this brutally frank, beautifully written description of ALS. My beloved boyfriend was just diagnosed. Last week, a woman at a dinner party, upon hearing news, actually exclaimed, “You need to say affirmations!” Gee, thanks. Leftsideannie, I sure do appreciate your telling it like it is!

    Reply

    • Andrea, I’m so very sorry to hear that your sweetheart has been diagnosed with this disease. I’m happy to hear that it helped in whatever small way to share this with you. There have been some amazing strides in ALS research thanks to the Ice Bucket Challenge, and I hope with all my heart that one of these new discoveries will help your boyfriend to not only live with this disease, but be cured of it. Take care. xoxo ~ Kate

      Reply

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