The Ice Bucket Challenge, Part 2: What it feels like to die.

Since my first article, the Ice Bucket Challenge has continued unabated. Sure, there are the concerns voiced by the Catholics and the Baptists. Concerns that I echo. Two wrongs don’t make a right, and if someone is going to die for someone else, it should be their choice.

But I want to return to THE POINT.

My first article was about people with ALS for once feeling like people care. But there is one extra “bit” that we are missing.

My friend Neal and his brother posted this poignant video. You see, they lost their brother a little over a year ago to ALS. The point that so many people are missing about the Ice Bucket Challenge is the ice. The sudden shock to your system that causes that momentary feeling of breathlessness. Of suffocating.

That’s what it feels like to die of ALS and DMD.

The very feeling that those suffering with ALS and late stages DMD feel all the time, moment by moment, day after day, at night as they sleep, during the day, as they struggle to breath. Watch the ESPN video about the guy who’s started it all, and watch the horrible effort he has to breath when the water hits him. (its towards the end).

In 2003, I went white water rafting in the Nile. Among the many exciting moments of the day was getting sucked under. I seriously thought I was going to die. I was under so long I couldn’t breath anymore.

So give your money or don’t give you money. Donate or don’t. But I want you to remember that moment, that breathless, hopeless, heart stopping moment when the cold water hits your body. And then imagine that is your reality hour after hour, day after day. Imagine the patients knowing that is their future. Imagine being the parent of a child with Neuromuscular disease and knowing that your loved one will slowly, suffocate to death.

No one has challenged me to the Ice Bucket Challenge. I missed it. But I’m going to do it, because I want to remember. And that painful, poignant memory will stay with me for a long time, as I pray for all those for whom this is a constant reality. Come back tomorrow. I’ll have the video posted.

72 thoughts on “The Ice Bucket Challenge, Part 2: What it feels like to die.”

  1. Thank you for posting this Charles. As a hospice nurse practitioner I have watched as people gasp and drown in their own saliva as a result of the epiglottis losing its ability to close over the trachea. Saliva begins to slowly trickle into the lungs. It is a terrible way to die. There are great medicines out there to alleviate the symptoms. Alas, there is no cure. I am pleased that for a moment in time victims of this terrible disease got a little bit of attention. Now my prayer is that the funds are used in ethically correct ways to research solutions to such horrible illnesses.

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