Sunday, 6 March 2016

Not So Cheerful

I don't feel like writing today, yet here I am, staring at the entry screen for my blog. It's here that I am compelled, constantly, to write about living with ALS. This is perhaps the most difficult thing to say, that I am living with this disease, not dying from it. I see today that another pALS has made the decision to leave this life. That's the dying part. I want to live as long as I can, but I will, without doubt, die from this illness within the next couple of years.

This most recent ruling in Alberta, the Physician Assisted Dying ruling, means that I won't have to guess about when that end of life comes. It won't be an issue of trying to live as long as I can while keeping in mind that I have to be able to end my life on my own. With PAD, I can stay longer, and worry less about timing my departure. I won't need my own strength, my own hands, my own arms, to do what will need to be done on my last day.

Yet even thinking about this makes me depressed. I don't want to go through all of this. It's no fun waking up in the morning feeling exhausted after sleeping all night. And it isn't even morning when I wake up. Often it's afternoon. I suppose this is a sense developing out of the realization that soon, very soon, I will no longer be able to get myself into my truck. I will lose that freedom, that independence which is so much a part of my life.

I need to cheer up. It's Adam's birthday today. He is here, visiting, in my home, today. The least I can do is make his day lighter, brighter and better. We'll make a roast lamb for dinner, along with a Greek Salad. Gifts have been given, salutations have been made. It's time to stop writing and start living. I'll get there. I'll cheer up. Then I'll do laundry.

As my Dad used to say, "Cheer up, things could be worse. So I cheered up and sure as shit things got worse."


  1. I hate it that you have such a terrible disease My dearest son. All we can hope for is that each day will bring you some measure of happiness . I love you lots. Mom

  2. I read this blog daily ..Transfixed. I am not a PALS, but have thought I was getting it for years. To this day, even as I sit here, I twitch non stop. I am 44 years old and terrified (I guess that makes me a wussy). With a Mom like you have, life can't be all bad, can it? I am not a praying person, so rather than lie and say I will pray for you, I will just think good thoughts and wish you the strength to keep going .... Until you feel the time is right.

    Greg (From the USA)