Sunday, May 14, 2017

Sky: Reverie

[written Fall 2016: Two Months after Diagnosis]

Like a lot of people, I blunder through life, dividing my time among three familiar worlds: The Now, The Past, and The Future. 

These days, I bounce, sometimes awkwardly, among the Big Three. I wonder if my recent diagnosis isn’t cranking up the intensity. Like, today I found myself standing around somewhat blankly in the kitchen, a little light-headed and spacey. Oh, did I forget to eat lunch again? All of a sudden I realized I was ravenous and, thrilled, I quickly put together (and savored) the meal I missed. 

Delicious! As usual, returning to the Present presents unexpected presents! This time a meal to be savored.

As I finished my simple meal, my mind wandered back in time to the eating habits of my long-dead, and neurologically impaired, father, Charles. His culinary preferences included Ring Dings, Karo syrup straight out of the bottle, and black “coffee” made with warm water from the sink and Sanka. 

In addition to his unusual dietary habits, my father lived with a severe case of MS and was in a wheelchair for a third of his life. Family and many friends were always cooking or bringing him special, healthy and delicious foods, which he would dutifully eat, but he’d just as soon have one of his old favorites, like a grilled marshmallow sandwich on Wonder Bread.

Charles was a hero in our family and in his broader community for his eventual acceptance and embrace of his deteriorating condition. He was able to find the love beneath the pain and sorrows. Myself, I didn't do so well with the process…at all. I was mostly uncomfortable with his decades-long decline into quadriplegia. It was hard to share, (or to resist!) his twinkle, especially in the intimate moments, like when I was feeding him. If I was around at all, I remained  in a more or less constant, sullen funk at all of the losses and things we would never do together.

Now, many years later, I’m more able to appreciate the gift life is offering me to try again, this time with my own decline! Will I be able to find a place of acceptance and peace as my father finally did? 

And off I drift  into the Future…Preparing myself for a nightmare of forgetting.

Today I learned something interesting: there’s more out there besides the Big Three for my mind to wander in. Yes, like where was that mind before I realized I was hungry? And what was my route from pondering the Past to imagining a wreck of a Future.

It almost seems like Alzheimer’s provides a kind of neutral ground to hang out in without necessarily being Present. I’ve visited this place a few times already and expect to be back. Not good, not bad. 

Detached ….a safe place to observe.


  1. Oh the Ring Dings, yes! Our dad had a unique diet. And the Ho-Hos-remember those? Same "food" just shaped like a jelly roll rather than a filled cylinder. Remember the "homemade" coffee cakes, recipe straight off the back of the Bisquik box? I remember squishing the butter and brown sugar in a plastic bag and sprinkling it on top of the batter.
    I agree, Dad did find a place of acceptance and peace but I don't believe the path was a simple one. There were days, weeks, when he was, understandably, incredibly down. And it would catch me off guard. His second wife, Barbara often came up with lists of attributes that began with letter A as did his middle name-"Agreeable", "Accommodating", "Affable"- all having to do with his positive good nature. That's how I experienced him as well. Yet sometimes now I wonder-did he ever feel pressure to be that hero, to be the person who graciously accepted this horrible path? On top of feeling down about his limitations did he also feel he couldn't be angry, rageful? One night there was a group of people over to our house, a class of some sort connected to their UU community. They all sat in a circle and they were taking turns making personal statements. I don't know what the theme or target question was but when it was Dad's turn he said, "I hate having MS.". While it scared me at the time I believe that statement was as healthy and helpful as being "Accepting". Sky, I don't know how one finds his way to peace with the cards you have been dealt but I agree that our dad may hold some of the answers. MY

  2. It's not monotonic, is it. Not the disease (whether MS or Alzheimer's), and not the emotional response.

    My mother never appeared to have the level of introspection that you have, Sky. She never believed or accepted that she had Alzheimer's. She just thought people (me) were moving or stealing her stuff when things weren't where she remembered putting them. I don't know that she had that detached place. As her memory continued to decline, and her world got smaller, she was more content. She was generally happy, and loved to laugh. You're picturing a nightmare and a wreck down the road, but it may not be like that at all. You may be content, and the expectations of the people around you will need to adjust. I learned a lot about love during my mother's journey with Alzheimer's ... I thought I would be the one giving and giving, but it wasn't all one way ... I continued to learn from my mother through it all.