Thursday, December 18, 2014


It an unwieldy question, but it gets applied to all manner of things..."what would you do if it were the last time you could do X?" or "how would you feel about it?"

I recently witnessed the later of those questions dawn on a small group of guys that had played their last truly competitive game of football. Even though the level of football was nothing close to the kind of football that pays outrageous salaries to babied grown men, it was as competitive as can be.

There seemed to be many unspoken emotions; sorrow, regret, happiness, bewilderment, and frustration to name a few.

I recall similar feelings when I finished playing competitive footy. I think I was relieved, too.

Of course, ALS gives rise to those same unwieldy questions on a frequent basis.

I remember losing the strength in my arms to button my shirt, or roll my collar down over my tie. I recall losing the strength to properly bathe myself. Losing the strength to exit the bath was demoralizing...a bit like a beetle stuck on its back. I remember how my ability to type decreased in speed and accuracy at work.

These aren't the lasts that I think matter, though. Sadly, I'm quite vague on some of my more important lasts.

I cant accurately remember when i lost the strength to pick up one of my girls and give them a hug. Or tickle them. Or clasp their hand in mine. Or pick them up when they falter.

I do remember when I last told them that I love them...every night, every time they leave the house, and a litany of times in between. But I can't form the words any more. I have to hope the series of noises I make are comprehended as, "I love you."

That's my reality today. We all know that my future has many more lasts in store for me.

A friend of mine recently went through the last: The last breath.

As my doctors have told me, later stage difficulty in breathing can't really be treated. All that's left is medication to make the patient as comfortable as possible.

Between now and then, I'm sure I'll lose the ability to eat food without significant risk of choking, so I'll receive my nutrition through my feeding tube. My fluids, too. I'll lose the ability to stand, even with assistance. Here's a real kicker; I'm in the middle of losing control of the muscles that make my lips form a pout to kiss.

I don't fear my last breath. But I do find the timing to be one of the most unfair aspects of my illness. That consumes my thoughts more than fear.

The thought that consumes me the most hasn't changed, and will likely be going through my mind when they fill me with morphine. It's basic and I feel it on a most quite primitive level; how do I take care of my girls?

I can't rid myself of that thought, and I don't think it's right to push that thought aside.

In my mind, to push that thought aside would be the moment I stopped caring, the moment I stopped loving. And while I may be in the midst of losing the ability to vocalize my love, I refuse to let the emotion leave my body.


  1. It is very difficult to find the right words to say as there are no right words.

    It is easy to withdraw to the safe option of posting a funny joke or even an unfunny one and imagine that you might be trying to lighten someone's burden by not focusing on the fact that their body is closing down on them and they are, in fact, dying.

    Humour suddenly seems an insufficient weapon for facing the enormity of that thought. I'm not saying it is wrong to try to be funny, far from it, but it is insufficient.

    I have no idea if you are brave or frightened, stoic or emotional, or a combination of all these moods at various times. I do know, however, that what you have been writing here has been an attempt to face the emotions you have felt and have yet to feel. That in itself is a brave attempt to leave a trace for others to recall who and what you are and always will be.

    So, no jokes from me this time. Just another wee poem about someone looking at Death. It says something about the emotions of the carers and the family, in this case a husband who cared for his wife:-

    To climb those stairs again, bearing a tray
    Might be to find you pillowed with a book
    Your inventories listing gowns and frocks
    As if preparing for a holiday
    Or, turning from the landing, I might find
    My presence watched through your kaleidoscope,
    A symmetry of husbands, each redesigned
    In lovely forms of prayer, foresight and hope.
    I climb these stairs a dozen times a day
    And, by that open door, wait, looking in
    At where you died. My hands became a tray
    Offering me, my flesh, my soul, my skin.
    Grief wrongs us so. I stand, and wait and cry
    For the absurd forgiveness, not knowing why.

    Hail Hail Tony

  2. Hi,Tony.

    This was posted on CQN by Roy Croppie. Heade ' Brothers in Arms' I immediately thought of you. I think you'll like it,I shoooor hope so.

    I frequently argue semantics,and sometimes even disagree,with SFTB. But now and again he nails it.