Wednesday, 20 August 2014

A Quiet Doom

There's been a lot in the news lately about the ALS Ice Bucket Challenge; I've been part of that cacaphony. People are talking about ALS, talking about a disease that has been largely missed in the public spectrum for the last hundred years. It is a tragedy that there are a great many people who have heard of Lou Gehrig's Disease yet so many don't really know what it is, let alone those three letters that change your life - ALS.

As with any successful campaign, the Negative Nellie's and Debbie Downer's have come out to feast. The more successful the campaign, the more of them are coming out to feast. It's even happening with people who know me, people who have seen what this awful disease has done to me; some of them have been questioning the process and effectiveness of this campaign. As with all things, I have a opinion - they are so wrong as to be far from reason.

The Ice Bucket Challenge is the best thing that could ever have happened to ALS. I am deliriously happy that it happened to my disease, something so successful at raising awareness and money. For those who would disagree, first of all I challenge you to something different. Try having ALS; see what it's like to have your Mom, your Dad, your brother or sister, your child die from ALS! That will change your mind.

Imagine that you wake up tomorrow morning and find yourself in a sterile hospital room where the neurologist comes in and says "You have ALS. You are going to die from this disease in about 36 months, perhaps less. As you go through these short months, you will see yourself slowly become paralyzed, one little muscle at a time, until you cannot even breathe for yourself. Along the way you will lose your ability to feed yourself and eventually even to eat. And you will lose your ability to talk, to share your life with those you love."

"Over the course of this disease you are going to have to rely on others for support; emotionally, physically, financially. You are going to lose every bit of privacy and self-reliance. You will lose your ability to bathe or shower, and ultimately even the ability to go to the toilet on your own. You will struggle with depression and loss; your appetite will diminish until one day you realize you have forgotten to eat that day."

"To keep you going as long as possible, we will arrange medical care along with all the machines. They will cost you a lot of money, probably most of your savings, and you will have to modify your home too, assuming you own a home instead of renting one. Eventually you will likely have to go into a facility for 24 hour care. The machines you can expect are things like walkers, manual and electric wheelchairs, a feeding tube, a tracheostomy and a breathing machine that will be permanently attached to you."

"All along the way, you will retain your mind. Your intellect will be mostly intact although you will experience things like uncontrollable emotional responses, panic attacks, depression and fear. You will still be able to feel; it's only your motor nerves that are dying, not your sensory nerves. Pain will become a part of your daily life."

"In the end, you will die, not all at once but slowly. You will be able to see the loss of all you worked hard for in your life. There is nothing we can do for you. There is no cure, there is no treatment."

Of course, when your doctors tell you that you have ALS, they don't tell you all of this all at once. I suspect they realize suicide rates amongst ALS patients would skyrocket were they given the whole story all at once. Instead they let you discover this all on your own, as you slowly die. It's up to your family and friends to keep you from wanting to die; it is a burden on them too.

So next time you hear someone say the Ice Bucket Challenge is silly or pointless, show them this blog entry. Ask them if they would want funds for research or education. Ask them if they would like the world to at least know that ALS is a disease, and that it is real. Or would they prefer to be quietly doomed, like I am.


  1. Holy wow Richard! Here's a video to explain to people who don't "get it" about why the ice bucket challenge is not silly: Sorry I missed you on Monday as I wasn't at work but gave Shahid my donation. You looked great on the news!

    1. Hi Michelle.

      Thank you for your kind words and for the donation. It's interesting that I posted that very video to my FB feed today. It is truly impactful. Sorry I missed you. See you next time I get to the Ed Centre.