Thursday, 1 August 2013

We Shoot Those, Don't We Daddy!

Let me warn you ahead of time. This is a story that my Dad told me. This is important to note as one of his aphorisms for life was "Never let the truth get in the way of a good story." It has become a family motto for me. So without regard to veracity and subject to correction by my Mom, who was definitely there, here goes.

On March 31, 1960 my Mom went into labour with her fifth child. She was to learn that it was another boy, my youngest brother, Matthew. My Dad duly trundled her off the the hospital in Halifax, Nova Scotia with their four other sons duly in tow. On arrival at the hospital the medical team said to my Dad, "You take those boys and go off somewhere for a few hours. When you get back we will be done here." That's the way it was done in those days.

My Dad, trapped with four squirmy little boys, decided to take us to the new Disney movie which had just come into town, an animated feature called "Bambi". He proudly marched his four sons, or more likely marched three and carried one, into the theatre and sat us down in the midst of a horde of other children, pretty much all accompanied by their mothers. There we were, in the middle of the theatre, two boys to one side and two to the other.

The movie began and a beautiful deer dashed its way across the screen and I turned to my Dad to speak. Now, before I go any further, let me share with you something about my lung capacity. I have always had a loud voice. Even as a small child I had a loud voice. On top of that, I have never had really good volume control. Mostly it has either been on or off, and that's it. Plus, we were in a noisy, crowded theatre with music and movie and children galore.

So, in my loudest outside voice, since I was, after all, two seats away, to compensate for all the ambient noise and simply because I had no volume control, just as this wonderful antlered creature burst across the screen, leaping to life before my young eyes, I hollered to my Dad, "We shoot those, don't we Daddy!" My Dad said every mother in the theatre glared at him.

I have always had good lung capacity. Now ALS is stealing that from me. My voice is softening, weakening and becoming more "breathy". My Forced Vital Capacity, a simple measurement of lung volume capacity, is on the decline. When I was diagnosed almost nine months ago, my FVC was 90% of "normal"; I am fairly certain it was well above 100% before ALS. Yesterday at the clinic my FVC was measured at 81% of normal, a loss of 1% a month.

I am losing lung capacity because ALS is weakening my diaphragm, the muscle below your stomach and lungs that controls breathing. Eventually I will lose all ability to breathe; life will depend on a respirator. Eventually this is most likely what will kill me. Along the way, at some point, I will need breathing assistance with a BiPap. There is a more important gatepost here, however. At 50% FVC you no longer qualify for surgery. So if I want a PEG feeding tube, I will be forced to decide once my FVC hits that mark, even if I don't yet need it. At my current rate of decline, that will be sometime around Christmas 2015; I will be 60. This choice will be life's Christmas gift to me.

It may seem an easy choice, get the surgery and live longer; let me assure you there is a lot more involved here than you think. One issue is the potential for a "crash" in my FVC; it happens a fair bit where some incident triggers a more rapid decline. Another issue is the complicated question of quality of life, living with a BiPAP and a PEG.  There are lots of other concerns, too many to cover in this short blog entry, things like care requirements and risks, impact on daily living, food and drink requirements, and so on.

For now, I will remember the story out of my past. It makes me laugh. The story I see in my future? Not so much.

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