Thursday, 31 March 2016

How I Feel

Katherine wants me to lose 15 pounds, an amount gained on our road trip last year, an amount of weight which she feels, if I lost it, would make a real difference in my ability to transfer out of my wheelchair. Would that this were so; I am not sure I agree with her. Besides my fear of losing weight in general, I'm fairly certain my loss in this case would not make a big difference in my ability to transfer.

Then there is the whole process of how to lose weight. With no working legs, I certainly can't walk it off. With the severe limitations I have in terms of physical energy, doing aerobic exercises or heavy arm exercises will only make my situation worse, wearing me out without causing any appreciable change in my weight. The only real way to lose weight is for me to reduce my calorie intake. The nutritionist at the ALS clinic, a woman whose fate, if left in my hands, would include an eternity on a "prunes only" diet, suggested that perhaps I should cut out my "non-nutritional" calories. This means cut out things like wine, beer and scotch. Katherine loves this idea.

As you might guess, this is a major stress point for me. I have lost a lot to ALS. I've lost my ability to stand, to walk, to stroll through the park with my grandchildren. I've lost the ability to have sex, to go sailing, to crash through the bush while hunting, to stand in the river and catch a salmon. I've lost so much. Now, the two things I love the most are at risk; eating and drinking.

There are so many PALS who envy that I can still chow down on a steak and swig back a nice cold beer. So many of them have lost this, the ability to chew, to swallow, to drink. So many of them can no longer consume calories except through a feeding tube or a straw. While I can still do this, I want to do it as much as I can. Soon enough I will lose these last two things in my physical self.

So I prevaricate, I cajole, I sidestep. I simply don't want to stop enjoying my wine and beer and scotch. I simply will not reduce my food intake; it's already dangerously low at times. I know it upsets Katherine to see all this weight on me. It upsets me to think that, soon enough, I won't be able to drink my wine, except possible through a straw. That will come all too soon.

For those of you who would suggest that I simply reduce my non-nutritional calorie intake, I ask you to try the following. Think about the something in your life you enjoy a great deal; I'm sure you can think of something. Now think about how you would feel if you were told you will only be able to do that for another 12 months, then never again. And then, finally, ask yourself how you might respond if someone said that you should do less of it, with little potential benefit, only for the possibility that you might, maybe, possibly be able to do something you can't do much of anyways.

It's a complicated thought process, filled with rationalizations, but try it. Try and see how I feel.


  1. I'm with you on this one....

  2. When your time is as limited as yours it - you get to call all the shots you are still able to make. Remember when my dad was dying of lung cancer and was still smoking; it was just about his only pleasure left in life and so I felt strongly that we had no business telling him to stop. He was doing the best he could given his circumstances and I'm sure you are as well.

  3. I am choosing to forgo a feeding tube. I agree; you get to call the shots! I wish wine and beer still tasted good to me. That is a loss that affects my social life!