Here or There/Like Light From A Distant Star

Sunday night after another long, quiet, isolated and isolating weekend.  We are in that period between Thanksgiving and Christmas when the networks, aware that people’s attention is elsewhere, stop broadcasting new material.  So, no Masterpiece episodes tonight.  But there was an engaging fund raiser about the Everly Brothers on PBS, and a Carol Burnett retrospective on CBS.  I watched the first, recorded the second, and caught the end of Sunday night football.

Carol ate most of the steak dinner I prepared, but is restless now.  Some nights she slides into sleep, but tonight she seems to be fighting it.  I can’t imagine what is going on in her brain to cause the difference.

I find myself writing more about myself than about Carol.  I believe that is because she seems to have plateaued.  She is certainly no better, but neither is she worse over these last weeks.  We have a kind of routine that varies only in terms of the different caregiver relief people who come.  There are three now.  The one who has been coming the longest is just back from her own medical leave.  She gives Carol a good sponge bath and hair wash each week.  One of the others came for the first time this past week while the third has been here four or five times.  Each has her own personality and interacts with Carol in somewhat different ways.

I am not sure Carol is aware of these different people who come to stay with her.

Carol continues to talk to some person in her headThere seems to be a disagreement.

The physical and occupational therapists are back after the resolution of an insurance screw up that prevented their coming.  Again, as they had done before, they managed to get Carol on her feet, but only as the result of some serious effort from the two of them working together.  Carol is also on an anti vertigo medicine on the off chance that vertigo might be part of her problem.  I am not optimistic but see no reason not to try that approach.

I began by saying I find myself writing about myself, and that is so because I am thinking about myself more as Carol’s condition has stabilized for now.  I am aware that the stability will not last but I do not have any way of knowing its duration.  What it has done, though, is given me the opportunity to kind of catch my breath and begin to think, however, tentatively about my future without her, for that is the inevitable road I am on even though I cannot know its distance.

I suppose these thoughts have been prompted in part by a newspaper clipping one of my Tuesday lunch mates gave me  It was from the Sunday Times, which I go through each week, but he must have dug deeper to come up with this article, which described how the north fork of Long Island is becoming the preferred destination for some city dwellers seeking a quieter life style.  It’s an area that has some appeal for me.  Although its shore front is on Long Island Sound as opposed to the ocean beaches on the south fork, it still offers miles and miles of sand and water within easy distance.

It might well be out of my price range, but perhaps not.

That is not the immediate point.  We are not ready to get into those kinds of practical details.

What is the point is that I am comfortable enough where I am now.  Our house is on a peninsula, so I am always near water, which seems to be a kind of constant in my life.  And this primarily farming environment offers a welcome alternative to the suburban life style, which I endured more than enjoyed for most of my adult life.

But I do ask myself if I want to live here without Carol.  Or our daughter, who in all probability will wind up somewhere else as she thinks about a career move that will take her out of Minnesota.  She never set down roots here.

Nor have I, put down roots here, that is.  The physical environment is one thing.  The culture is another.  There is nothing wrong with Midwestern culture.

It’s just not mine.

I have always said, partly in jest, and partly quite seriously, that having lived here for sixteen years, longer, in fact, in this house than others I have inhabited in my life, still, I  am incompletely and imperfectly acculturated and that is as good as it is going to get.

Back east I have daughters, their families with grandchildren, and a number of very good friends and former colleagues.   I do not see myself blending any more fully into Carol’s family.  That’s not anybody’s fault.  We are just not that good a match. Having Carol here with me was all I needed to be comfortable. Without her, I just am not sure.

And when I think about my own inevitable decline, as I have begun to do, I sometimes see myself facing an existence absent any close human support.

And that is not an appealing prospect.

Carol appears to have fallen asleep.   I will close this writing session.  Clearly, there is more to think about this issue and will pick it up again when the time seems right.

A cold very blustery early December day.  Hardly any sun, constant howl of the wind, which has blown all remaining fallen leaves into the woods, leaving the browning grass exposed.  Altogether it is a day ripe for dark thoughts.

I have come to the startlingly obvious realization that at least for me it is harder to be alone in the winter than the summer.  When the weather outside is so inhospitable, from my point of view, the temptation is to burrow into the warmth both physical and emotional of one’s house.

Now with the storm doors reinstalled, and the gas burner recently checked and tuned up, my house is quite warm enough in the physical sense.

However, its emotional thermometer is dipping.  Carol’s body, in sleep, on the couch nudges that emotional temperature up a bit.  But as I dried from my daily shower, and noticed as I do every day, Carol’s towel hanging unused in its accustomed place next to mine, I experience a strong pang of loneliness, reminding me yet again that only I now use that bathroom.

The season is not the cause of  this-self-pitying mood; it is the amplifier.

And what it amplifies are the two realities within which I live.  One is the patterns and artifacts of all the pre-disease years with Carol.  The other is those same patterns and artifacts now forced into the present reality of the diminished Carol.

The link between the two is her physical presence.  In recent days I have come to understand how important that is for me.  It enables me to live a kind of lie, that the past reality of our lives together somehow continues into, and perhaps merges with, the present.

I call that a lie because intellectually I know it is false.  Whatever we are experiencing now is its own new reality leading us toward a looming future of immeasurable difficulty.  To forestall that future’s arrival is reason to subscribe to the lie.

It’s a maddeningly ambiguous place to be.  I take her hand and squeeze.  She tightens her grip as well.  What exactly does that mean?  Is it just an automatic muscle to muscle response, having nothing to do with her brain?  In other words is it just a response to stimulus, a neuron signal up to that portion of her brain that responds much as it does when you pull your hand away from something hot?  Or on a level up, does it trigger a memory based response, recalling the thousands of time her hand felt such pressure and responded to it?  And if it does do that, does her brain connect that memory to me as the party of the second part?  And even if it does so, which Steve is it responding to, the one actually holding her hand, or the one stored in her long-term memory?

About a week ago, there was a brief incident that shines a bright light on what I am trying to describe.

“You look pretty good,” she had said.

A remark these days so totally unexpected.  It echoed, sort of, in my memory as something she might have said once upon a time.

But now?

Take the sentence apart.

First, the “you.”  Is that me now, or me in her memory?

That question is hugely important.  We will come back to it.

Then what follows, “look pretty good.”

There is no getting around the idea of physical attractiveness.

I had just come into the living room from the kitchen where I was starting to prepare supper.  I had heard her call my name.  Usually, when she does that, I find that she does not have a specific request or question or need.  I ask her, and she sometimes says she has forgotten, or looks perplexed as to why I am even there.

This time was different.  At least, her remark seems to suggest something else although what that might be, I have no idea.  I came into the room.  She looked at me, and said, “You look pretty good.”

Not in a surprised way as though it was unexpected that I might look good.  More of an appreciative way.

It is tempting to read too much into those four words.

Of course, I want to think that she is looking at me as her present-day husband. After all, those four words followed her calling my name.  What other conclusion can I draw?

Well, for starters, there may be no connection between her summons and her observation.

Perhaps it is just like the light reaching us from a distant but now dead star. The light is still bright, but the source is no longer there.

Because of that ambiguity, I am, in a strange kind of way, comforted by Carol’s quite noisy sleeping.  She lies on her back, often breathing through an open mouth, producing a cacophony of snores and snorts that demand to be heard.

And I am happy to hear them.

Because they announce that she is still here in our mutual present, whatever shape that has.

Sometimes she murmurs unintelligibly.  I imagine she is giving voice to her own struggle with these realities.

When those sounds stop, when she goes into a quiet sleep, that looming future presses itself into my consciousness with unrelenting force.

I wait for her to again call my name.

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4 Responses to Here or There/Like Light From A Distant Star

  1. Trudy says:

    Oh steve. Your description of the life you are leading helps me understand in a way I never expected. I’m grateful to you for this insight. Thank you.

  2. Marty says:

    Steve- Another great post. Sorry I missed lunch the other day. Marty

  3. Kathleen flores says:

    I wish I could ask Carol how she is feeling, but I know that isn,t possible. But through your posts I can get a small glimpse of her world. At least I am now sure that she is loved, and had some wonderful times in her life. I guess, however, that makes it all even more heartbreaking.

  4. Pat Mattimore says:

    Steve, your words and thoughts are truly beautiful and touching. I hope that writing about your journey through a very difficult time brings you peace in your mind and heart. Carol is truly blessed to have such a wonderful, caring husband. My prayers are sent for you both.

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