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LETTER TO THE EDITOR: ALS worse than a death sentence

Living with ALS is like you are that death row inmate, says letter writer

To the editor,

The sentence has been passed. Doesn’t matter how you got here, doesn’t matter what you’ve done to get to this point. How much you have fought or will fight. The ruling has been given. It’s death row for you whether you like it or not.

Living with ALS is like you are that death row inmate. All you have is time. Time to wait, time to think, time to be angry, time to just watch the clock. But where that inmate can leave his cell, go to the yard and smell that fresh air, ALS leaves you trapped in the prison of your own body. Unable to walk, unable to move, unable to taste the freedom of that simple pleasure of having the choice to go to the yard or not.

That inmate gets to talk with other inmates, share their life and experiences. ALS has robbed me of my voice like a cruel jailer who has put me in solitary with my own thoughts, unable to give my words to those I love. Even the simple act of sitting for a meal in the canteen. That inmate gets that freedom. ALS only gives me the choice of a feeding tube or no food at all as it cruelly wastes my body.

But there is hope for that inmate. They can be granted that last-minute reprieve from the governor, staying that execution order. Giving back that hope, that spark of life. To keep on going. ALS does not allow that hopeful whisper. Instead it says, ‘sometime, maybe today or tomorrow, you will be executed by me.’ There is no reprieve. There is no mercy. You know it’s coming, you just don’t know when.

Which would you rather be? The inmate or the one who really has the death sentence? Those of us who live with ALS and their families need support to end this awful disease. This is why I am sharing with you what it is to live and die with ALS.

Mike Williams, Nanaimo

A journey with ALS: Serge’s story

A journey with ALS: The search for a cure

A journey with ALS: Care for ALS patients often falls to spouse

The views and opinions expressed in this letter to the editor are those of the writer and do not reflect the views of Black Press or the Nanaimo News Bulletin. If you have a different view, we encourage you to write to us or contribute to the discussion below.

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