It’s either cool or cold today according to your frame of mind.  I won’t choose.  It is somewhere in between.  No sun and a steady drizzling rain that might develop into something more significant.  Reports of street flooding in town, but no danger of that here, sitting as we do atop a hill.

Another physical therapist will be here soon to do an evaluation to determine if she will undertake another round.  The goal will be more modest than in past therapeutic efforts.  This time we are looking to get Carol back on her feet, literally.  Resuming walking may be beyond the range of possible outcomes.

I am also aware that part of the need for an evaluation at this juncture is to project the benefits of the therapy so as to convince insurance to pay for it.

In any event, I am snatching a little writing time now, sitting across from Carol in our living room.  After being quite talkative—although I cannot say about what—she is about to start her afternoon drowse.

A realization has occurred to me.  As I write, I find myself expressing myself, on occasion, in a light-hearted manner that is most definitely at odds with our situation.  This should not surprise me.  I have always during life’s dark moments used a little humor to lift the gloom.  Doing so is not a conscious decision.  It is how I am wired.

If I try to analyze myself to explain myself to myself, I recall hearing somewhere a handwriting expert suggest how an individual’s basic personality can be revealed in the strokes of pen or pencil.  Even as I write that I wonder if this kind of expertise is becoming a quaint relic as more and more people only tap out their thoughts on a keyboard rather than inscribe them on paper.

Be that as it may, we still sign things like credit card receipts, and perhaps that will continue to provide a sufficient basis for what that long ago expert had to say.  What has remained in my memory was the assertion that if the handwriting literally had an upward tilt to it, it reflects a core optimism.  My handwriting, as miserable as it is, has such a tilt, most noticeable in how I cross the t in my name.  I do so with a longer line than is necessary, and with a strong upward tilt from left to right.  I even feel a bit of a rush of energy when I make that line, which I do after I have scrawled the other letters of my name.

So it would appear, if that expert’s ideas have any validity, that I have a solid core of optimism in my emotional makeup.

I feel that is correct.

I also know that optimism seems totally out of place in our current situation.  On the one hand, it is.  On the other, an irrational optimism stiffens my resistance to yielding to this awful disease.

It will defeat us.  I know that.  But not without one hell of a fight.

And on some level, I believe Carol shares that determination.

She does not want to give in.

Settled into my writing chair in the living room across from Carol sleeping on the sofa. Usually, she does not fall asleep as early or soundly as she has done tonight.  I think she was knocked out by the session with the physical and occupational therapists this morning.

I did my grocery shopping this afternoon, and needed a rest before making supper for us.  On shopping days it’s always frozen dinners.  Carol’s is lasagna and she eats it with a good appetite. For me, a hungry man dinner.

Dog is knocked out also, but that is normal.

Today Carol worked with her third physical therapist, as well as her third occupational therapist.

I thought we had moved beyond the reach of both kinds of therapy.  We had started with occupational therapy a couple of years ago shortly after Carol’s treatment for breast cancer was completed.    At that time, we were working on her restoring her handwriting, which had been a thing of pride and beauty.  But after chemo, she could not manage to write on a straight line, or start at the left margin.

In my ignorance then, I thought this problem could be, and would be, fixed.

Of course, the problem only got worse.  We moved on to the first physical therapist, who concentrated on exercises to strengthen her trunk.  When that therapist thought she had done what she could, she left us with a sheet showing how to do each of the exercises, along with a pedal device with which Carol was to continue strengthening her legs.

More or less at the same time, we worked with the second occupational therapist with the goal of restoring Carol’s skill on the keyboard.  She had been an excellent typist.

I thought, naively, that muscle memory would kick in and fingers would again find the keys as they used to.

Of course, that didn’t happen, any more than the piano lessons we signed up for restored her ability on that kind of keyboard.

When her mobility difficulties worsened, we worked with the second physical therapist, with the goal of getting her able to go up the stairs.

I’ve written about that failed effort.

I did not see much point in continuing to work with either variety of therapy.

But our nurse practitioner, observing Carol’s inability to get off the couch, and recognizing that she was more than strong enough so to do, suggested we try yet again.  I saw no reason to object, so the third physical therapist came last week, and asked if she could return with an occupational therapist to see if the two could combine their efforts.

That is what happened today.

With a degree of success.

They managed to get Carol on her feet, and then also into her travel chair for a little movement around the house.  These feats were accomplished in spite of Carol’s spirited, and occasionally profane, resistance.

As I witness their working with Carol, I felt a little stirring of hope.

Maybe, just maybe, in spite of the heavy weight of the downward movement of the disease, that movement could be stayed, and even to a small, but not insignificant degree, reversed.

A great success would be to get Carol back on her feet.  Perhaps even to walk a little.

Is that too much to hope for?

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Two Worlds

Another rainy fall day.  Turning colors on trees becoming more vibrant and worth a drive up the Peninsula to witness, but rain has dampened the leaf peepers’ enthusiasm today so I made an uneventful crossing to our mailbox, only to retrieve one thin piece of bulk mail, which I tossed into our waste bin on my way back into the house.  Carol was fidgeting and thinking she was falling because her legs were dangling off the sofa.  I repositioned her, and she is now  lapsing into her afternoon drowse.  I’ll take the opportunity to see what thoughts are looking for a way out of my mind..

My morning routine involves first seeing to Carol’s hygienic needs, then emptying the dishwasher, which I am trying to train myself to do the evening before, feeding and letting the dog out, and then preparing Carol’s breakfast, usually melon chunks or a banana, toast, a breakfast sausage, and her juice.  When she is settled down from all of that, including encouraging her to swallow her morning meds, I go upstairs to shower and dress for the day.

That trip upstairs always brings a wave of sadness, nothing intense because it is replicated daily, but strong enough to remind me of how different my life, or should I say, our lives, have become.  Entering our upstairs I cross the border into another country.  Even the dog, who nearly always positions herself in my vicinity, seems to recognize that I am leaving our common living space and contents herself with settling on the first landing if she ventures up the steps at all.  Only when I spend a decent interval in my office does the dog decide to figure out what has happened to me.

Granted all of that, our upstairs still forcibly reminds me of the then of our lives rather than the now.  In our bedroom are our two dressers, and our two clothing closets.  Because of the configuration of this room in our old farmhouse, there is not space for two night tables.  The one we have, an antique little cabinet we purchased from the  shop half way to town, sits between the bed and the doorway.   Before I installed our set of cordless instruments,  we only had one  plug into a jack phone upstairs located in my office in the adjacent room.   Since I was the usual phone answerer—probably because of my many years of having a phone on my work office desk—even before Carol’s deterioration, I positioned myself on the side of the bed nearest the doorway so when the phone rang,  I would roll out of bed and stumble into my office to answer it.  When we got the cordless phone, I put it on he nightstand next to my side of the bed.

For years it was thus, with Carol on the other side of the bed.  We both liked to read at night, so I used the night stand to hold whatever book I was working through.  Because there was no corresponding night stand on the other side of the bed, I put a short shelf over the headboard to hold Carol’s books.  However, at the beginning of her difficulties, she began to experience trouble navigating from that side of the bed, around it, and then out the doorway, across the hall, to the bathroom.

As a result, we switched sides.  I still answered the phone when necessary by reaching across her, but she piled her reading material on the night stand.  Still sitting there is an issue of Scientific American, which every day as I sit on the bed putting on my socks reminds me again of the scope and variety of her interests, frankly a good deal wider than mine, although mine perhaps run a little deeper.

When I exit the shower, I take from the rack my towel.  Her towel, now long unused, remains hanging on the rack.  When I reach into the storage space a previous owner fashioned into a closet by installing shelves and folding doors in front of them, I see that my items are housed only on the top shelf while hers occupy the others.  In the shower itself is the corner caddy on which standing upside down still is the bottle of her hair conditioner.

Its companion bottle containing the shampoo is now on a shelf in the downstairs bathroom near the couch in the living room.  She had always taken very good care of her luxuriously thick hair,  one of her most appealing features.  The combination shampoo/conditioner set was of especially good quality, which I would order online as necessary.

That the two bottles are now divided upstairs and down, the latter being administered occasionally by one aide, the former not at all, underscores the then and now that we are living through.

Two bottles, one in each of the worlds, past and present.

The constant tug back and forth, the past muscling itself into our present.

For now, I would not have it any other way.

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Just back from town for weekly grocery shopping.  At the butcher shop one of the clerks asked after Carol.  We always used to food shop together, and this person hadn’t realized that I had been coming by myself for some time.  When I explained why Carol was not, and would not be, accompanying me, she did what it seems everybody does in that situation: she referenced her grandmother whom she said, she had seen, but had not been seen by, for fifteen years.  Such a response, I suppose, is a way of sharing.  The first few times somebody so shared, it was mildly comforting, saying together we  belong to this group of suffering human beings.

 I confess, now, it has become a touch annoying.

I’ve heard that men often try to fix problems.   In relationship advice expositions of this tendency, men are encouraged to just listen to the woman’s account of what is troubling her.  I saw an amusing video to this effect posted online in which the woman is describing this discomfort she feels in her head.  When the camera shifts to the man’s perspective we see that the woman has a nail in her forehead.  The man tries to point out that fact.  She continues talking about the discomfort.  He listens, perplexed.  The title of the video is “It’s Not About the Nail.”

I am not interested in the relationship implications of this gender analysis.  And I have no idea whether it is, in fact, true that males feel compelled to fix things while females desire an empathetic listener.  Dealing with such hypotheses is well beyond my pay grade.  But what I can say without hesitation is that whatever the case might be for my male compatriots, I have that trait.

I want things to work as they are supposed to.   If they don’t, I become irritated.  And try to make them behave.  These attempts at fixing mechanical problems can be problematical, but usually not fatally so. I am persistent enough, intelligent enough, and wary of not doing anything stupid enough, to generally manage to fix things rather than do further damage.  That combination of limited natural talent and decent intelligence indicates why had I continued with my original college plan to become an engineer I would have been a mediocre one, forever swimming upstream.

Did not get much writing on this on my last session. Life intervened,  most significantly by introducing Carol’s stomach upset resulting in vomiting and diarrhea for the better part of an afternoon.

She’s better now,  and I have just made my way, with some difficulty back from our mailbox.  On this rural stretch of road, all the mailboxes are on one side to accommodate the carrier’s route.  Ours happens to be across the road.  That can be a bit of an issue in the winter, but there is no snow yet.  On the other hand, the leaf peepers are out in full force, driving up and down the Peninsula as the leaves, particularly the maples, begin to turn.  We are nowhere near full color, and yet I had to wait several minutes each way of my crossing, and even with the wait, I was obliged  to hustle.  I can see what’s coming from the south for a decent distance.  From the north, however, traffic comes roaring up and over the crest of a hill.  This road is a state highway with a 55 mile an hour speed limit.  A little inattention, as for example if I were to be looking at the envelopes in my hand as I head back to our house, and I would be road kill.

I will try to pick up the thread where I last left it before Carol’s illness.

My most recent fix-it project involved our fairly new dishwasher.  As with so many products, this otherwise sturdy appliance relies on little pieces of plastic in what can be important places.  In this instance, it has decorative plastic clip-on pieces at the end of the track through which the rollers of the top rack slide.  The job of these pieces is to stop the rack from riding off the track.  After a wash cycle one day I found this plastic piece from the left side track on the floor of the tub.

As many times as I popped that piece back on, it would not hold.  I observed how the one on the right was positioned, duplicated it for the one on the left, and maybe it would remain fixed for a couple of washes.  Then, thinking I had finally fixed the problem, I would slide the top rack out to put something at the back of it, only to have the rack continue past its end and dangle without support.

At first, I simply resolved that this matter, particularly in light of the other more pressing complexities of my life, was simply not worth my attention.  And yet, I could not tolerate the fact that this part of the machine was not operating as it should.  I recalled how a repair technician solved a similar problem on a previous machine, and I came up with an answer.

Problem & Fix

I fashioned a new stop for the track, using a four inch plastic cable tie, finding a way to thread it through openings on the end of the track so that it would now block the wheel where the plastic used to perform that function.

The repair has worked, and I feel a little surge of satisfaction every time I roll that top rack out.  The thing is again working as it should.

I find it difficult to leave problems alone.  I will persist and apply my limited mechanical aptitude until I find a solution, or failing that, eventually cry uncle and call in a professional.

I am facing such an annoyance now with my watch, which has a little window through which a number corresponding to the day of the month appears.  The mechanism that causes whatever this number is inscribed on to turn to the next date has somehow gotten out of whack.  I’m guessing that the mechanism has to be lined up in such a way as to ignore the sweep of the minute hand past noon, and then turn  some kind of wheel to expose the next number when the minute hand goes by twelve midnight.

However, it does not quite do that.  Rather, it either turns too early, so that the new number shows up after noon, or too late, so that the old number remains after midnight until noon the next day.  I have tried to fix this malfunction by using the adjusting stem that manually changes the number when it is pulled half way out so as to be able to work around all those months that have only thirty days.  But no matter when I make the adjustment, such as turning to the new number right after midnight, the problem returns, unchastened and bold.

Clearly, I can’t fix it.  Perhaps a watch expert can, but in spite of my irritation, this is just not worth the effort now.  So, I will live with the fact that as I look at my watch at this moment, it insists that it is the 22nd when I know full well it is the 21st.

Whether or not I am exhibiting a typical, or perhaps an exaggerated, version of the male fix-it mentality, I respond to most problems with an urge to set things right.  In my professional life as a college administrator, this trait was probably useful.  As a writer, and teacher of writing, it underscores my purposeful emphasis on rewriting.  And, as I have indicated, in my personal life, matters large and small induce the same response.

How then do I fix Carol?  How restore the wheels in her head so that they line up properly again, and mesh as they are supposed to?

There is no place to fasten a tie to stop her thoughts from sliding off the track.

I cannot make that repair any more than I can get my watch to function properly again.

To fix my watch I have the option to take it into town to a jeweler.

But there is no expert repair shop that will  restore Carol to her wonderfully working self.

That failure produces in me an emotion laced with anger, frustration, and above all, a constant and deepening sadness.

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A Down Staircase

This gallery contains 6 photos.

Just finished my Sunday night television watching, a mix of baseball playoffs and Masterpiece Theater.  Sitting in our tv room I was keenly aware of  the empty chair next to mine where Carol would sit on these Sunday evenings, and … Continue reading

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Sackett Street

{Note: I have been posting in the chronology of the writing, so that the posts have appeared later than the actual time of composition.  However, for this post I am ignoring that chronology in favor of thematic consistency  by putting out a post written only a week or so ago because it picks up the reference in the last post to the time Carol and I shared in the Brooklyn of the 80s.

I apologize if my attempt at clarity only leads to confusion.}

Late afternoon.  It will be dark soon as we crawl toward winter.  We’ve already had two or three light snows, but today the temperature is in the 50s.  Back from my Tuesday lunch during which, at my suggestion, we discussed the options available to me as the lease on my Nissan Altima soon expires.  I professed my love for the latest gadgets available in the newest models, an argument against deciding to purchase my current lease car.  It was pleasant to talk about something, which in any serious way, is not consequential.

The tentacles of the past continue to wrap around me.  In truth, I do not fight too hard to free myself from them.  So to do would place me in the immediate present facing an unknown, and unknowable future.  In that respect, reminders from the past, though still painful, serve some useful purpose.

The one that just intruded itself into my consciousness came from a review of a new Thai restaurant.  I came upon the review while skimming through the headlines on the online version of the Times.

I am not particularly a connoisseur of Thai cooking.  I believe the last time I had Thai food years ago I suffered an allergic reaction.  So the ethnicity of the food did not attract me to the review.

The location of the restaurant did.

It is in Carrol Gardens in Brooklyn.

On Smith Street.

Not far from Sackett Street.

Where Carol rented her apartment while working and finishing her undergraduate degree in the Gallatin program at New York University.

Sackett Street, a short hop from Brooklyn Heights where we would sometimes dine at a café on Montague Street.  We delighted in starting our meal with dessert, usually chocolate mousse, and then a cocktail.  After eating, we would walk down Montague Street and onto the Promenade and find a bench.  There we could gaze across the East River to the Manhattan skyline, see the World Trade Center towers, and to our north the ancient grandeur of the Brooklyn Bridge.  The promenade would usually be busy with joggers, bicyclists, parents pushing strollers, people walking and talking, or listening to the music in the headphones attached to their walkmans, that ancient device that played the even more ancient cassette tapes.

Those were hectic times.  I was working full time, but also teaching overload courses, and adjuncting at Empire State College. Carol was finishing her BA degree and working at the handicapped desk in NYU’s library.

In a year or two, she would finish her degree, join me out on Long Island, marry me, and together we would buy a house and start our family while she completed  her JD at Touro Law School.  She was eight months pregnant when she graduated.

All of that was to come.

But the time on Sackett Street remains prominent in our—I should say my—memory.  And in my memory, I recall how fondly Carol spoke of that neighborhood in my hometown of Brooklyn, how she felt comfortable, being looked after by the Italian grandmothers sitting out on their stoops, calling her a good girl and  keeping an eye on her as she went to school and came home from work, and how once in her hurry she left her key in the front door and it was still there when she came home.  And that memory also brings back to me my connection to the place I had left so many years ago, the whole experience serving as the basis for my poem , “A Street in Brooklyn,” celebrating how our backgrounds came together.

In Brooklyn.

On Sackett Street.

So long ago.

A tendril from the past that clutches me in its grip, causing pain at what has been lost but also sending a warm breeze of memory.

[“A Street in Brooklyn” is the published excerpt from the much longer and unpublished “The Gulls’ Sweetly Banked Flight.” Read MS version here.
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Carol That Was, Carol That Is

Coming on midnight after a long and mostly difficult day, as Carol was in a combative mood.  The day was brightened in the afternoon by my walk next door for lunch and conversation hosted by my neighbors Amy and Brad.  Amy is dealing with her own medical issues as she has just finished a course of chemotherapy and will be beginning stem cell therapy to deal with myeloma in her spine.  She remains her energetic and welcoming self, and along with Brad they have set up these Tuesday occasions for me when I have caregiver relief.

It is becoming increasingly difficult to see in Carol the woman she was, that set of qualities and characteristics being slowly driven out by the insistent presence of the Carol she now is.

I want to fix the Carol that was in my memory to push back against the insistent pressure of the Carol that is.

And will become.

I can do that by cataloguing things in our house that predate the onset of the disease.

In our dining room we have the bottom piece of a second-hand breakfront we bought years ago.  It had a top section to sit on it, but the only place we could put it was in front of a beautiful old window looking out of the front of the house, so we sold the top piece at a yard sale.  I have no idea what the buyers intended to do with it

The piece we have is about seven feet long and a foot and half deep, providing a large surface, which Carol has filled with all sorts of stuff.  There is the antique typewriter in the middle, which amuses and interests the grandkids when they come.  Next to the typewriter is a tiny little book of bound pages.  Most are blank, but on a few in barely discernible pencil strokes are short passages, some seemingly personal, others apparently copied from some source, such as the one suitable for a headstone.  I will now never know where this book came from, who might have written on its pages.  Beneath it are two other very old volumes.  One is Elizabeth Browning’s “Sonnets from the Portuguese.”  The second and larger volume is a leather-bound collection of Longfellow’s poetry. It was once owned by a Johnson, but I cannot read the first name.  Perhaps it says “Mary,” which would be Carol’s mother.

It makes perfect sense that Carol would have books occupy a place of honor on this piece of furniture.  She was—I started to write “she is” and had to correct myself—a book person.  She would smile when she told me how her father would find her under a tree reading when she was supposed to be doing some chore on the farm.  One of the saddest consequences of her disease is that she can no longer read, and has little patience being read to, something which she used to thoroughly enjoy.

Much of the rest of the surface holds photographs, mainly of Carol’s family.  Prominent among these is a 8X10 picture of Stella, her paternal grandmother, wearing netting over her face as she tended her bees, the necessary agents of fertilization for the family’s fruit orchards.  Other pictures include one of Carol and Dean, her older brother as young children,  Tucked into the frame of a photo of Carol when she was perhaps in her thirties or early forties standing before the columned front of a public building, maybe in Washington D.C, one of our travel destination, is the high school picture of one of her best friends.  There is a hodgepodge of others: a shot of me and our daughter in England, a  shot of us with the two couples we used to socialize with regularly, a picture of members of the local historical society in front of the Hessler Log House, moved and restored by the historical society.  Toward the back left corner, not visible behind the photos is a silver tray on top of which is a silver salt and pepper set, somewhat tarnished.  These items I am reasonably sure came from her mother, probably passed down from her southern grandmother.  Right behind and to the left of the tray is my space in which sits a trophy I received as most valuable player on my sandlot football team, and next to it a picture of me receiving it, with my father by my side.  I mention this at this point only because that trophy from more than fifty years ago was buried in a corner of a closet until Carol insisted we take it out, polish it up, and display it.  It thus represents the Carol that was in her feelings for me.

On the walls of our downstairs living space are, with one exception, pictures she has chosen, such as the one of the French fur traders in a canoe I included in my last post. Upstairs in her office, her computer has a number of files in which she was laboring to begin a novel for which that print could serve as a cover. Her focus would be on the Native Americans.  The French would be there as an excuse for the story to begin.  The last story she published a couple of years ago featured a missionary priest, a young Native American woman, and a wolf.

Other pictures include a rendering of the Edmund Fitzgerald going down, and in another frame a startling image of a lighthouse keeper standing atop his building as storming waves rise to his feet, both reminding me of her love of water, and the Great Lakes in particular.  She never did fully share my passion for ocean waves and beaches, preferring the calmer grandeur of the lakes.

Also on this wall, there is a well-executed water color of the buildings of Fishtown in Leland on the Leelanau Peninsula, across West Bay from where our house sits on Old Mission Peninsula.  She saw the picture hanging in the infusion room where she was getting her chemotherapy, and as was her wont, inquired about it, and found out that the artist was local.  Either he, or perhaps his wife, had sat in the same room.  We contacted him and bought a print of the picture.

The only non-Carol picture on these walls is an impressionistic image of a jazz musician that hangs above the piano Carol used to play.  It is a print from a slide given to me years ago by one of my writing students at Empire State College on Long Island, NY.  As I recall, he was an older man, a better artist than writer, but as was usually the case with students at Empire, strongly motivated to succeed.

I pause to look at this catalog from a different angle: those pictures Carol bought to show her connection to my background and interests. In our little TV room, the one we call the green room for the obvious reason of that color on its walls, there is the famous print of a photograph showing workmen calmly sitting high up on a steel beam, part of the skeleton of the rising Rockefeller Center, sitting there and eating their lunch.  One can only wonder where the photographer was.

I began this survey of the artifacts in our house that expressed Carol’s interests.  Then, I turned to those that she had bought specifically for me.  I will conclude by combining these perspectives where our love for each other found its most appropriate place.  While Carol was finishing her undergraduate degree at New York University, she moved to an apartment in a brownstone in Brooklyn, my hometown (about which more in a forthcoming post).  I would come in to stay with her whenever possible.  We enjoyed spending time on an elevated walkway called the Promenade in Brooklyn Heights, which offered a view of  Manhattan across the East River.  On the wall over the fireplace in the living room is a print she bought representing that place and that view. In my office upstairs is another of Carol’s choices for me:  the official team photo of the World Series winning 1955 Brooklyn Dodgers,

Besides pictures, there are the work spaces.  To write, Carol demanded isolation.  We began by setting her up in the partially finished basement with a desk.  When we decided to turn the basement into a little apartment for the convenience of my New York daughters and grandchildren, she lost that space.  Nothing else was available in the house.  Our daughter still occupied her bedroom, and my office had been, from the beginning, in the remaining bedroom.  So, we contracted with our nephew to deconstruct and reconstruct a small outbuilding that the previous owner had used to house a horse.  He made it into a rather nice office.  I believe it already had electricity, but we had the Internet wire brought out to it, and supplied it with a phone line and a walkie talkie to communicate with me in the house.  We furnished it with two desks, one regular flat surface, and one for the computer.  Because Carol was heavily into her photography interest at that time, we also put a large cabinet, designed to hold photographic prints.  In it now, as well, is the professional grade Canon ink jet printers with which Carol started a business turning her photographs into saleable items.

None of this, however, got much use.  Winters made the building difficult to get to.  And it had no bathroom.  In it however, I recently found a notebook in which she was writing notes to herself in an attempt to get her French fur trader novel into gear.  I have only glanced at it, but in the proper mood when I want to bathe in my memories of the writer Carol was I will sit down and read it.

When our daughter moved out, Carol took her bedroom for her office, and we bought another desk for it, leaving the other office furniture in the little building, which we came to call the barn studio.  She worked well in her new in-the-house office, writing her stories, and organizing them into a collection, which we hoped to sell.

Then came her cancer, and subsequent decline.  Her office now houses medical assistance equipment, such as the shower bench she no longer uses.  Her laptop sits on the desk, next to the phone extension.  It’s a lovely place to work, looking out as it does at the orchards across Center Road.

A lovely place, but I’ll leave it as it is.

It belongs to the Carol that was.

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Afternoon. I am back on my perch in the living room while Carol is on hers, sleeping noisily on the couch.  It is a fall day outside, gray and rainy, the leaves on  the abundant and ancient maples on our five acres  beginning to turn and fall

The oak woodwork on the staircase leading to our upstairs communicates solidarity, but does not persuade Carol to go up to the two landings and through the two turns to reach the hallway leading to our bedroom.

In fact, her condition has worsened beyond her inability to climb steps.

She will not stand though her legs are quite strong enough to support her.

Her fear is stronger still.  I can lift her to her feet, but she tries to sit back down, and I wind up supporting all her weight until I can steer her back onto the couch.

Thus, her fear of falling is now crippling, creating in her a paralyzing panic, even sometimes—and this is a crucial point—when she is lying flat on her back.  This fear does not seem to result from  her memory of a fall. I don’t think she now remembers the one she had some ten or twelve years ago, which gave her a broken ankle.  No, it seems this fear arises from the lack of communication between  her eyes and her brain.  I can only try to imagine how disorienting it must be to not know, literally, where my body is, but that is my guess as to what causes her debilitating fear.

Evidence for this hypothesis comes from at least two professional sources.  At a routine eye exam about a year and a half ago, she could not read the chart.  She could see it, but she could not read it. Her brain did not understand, or perhaps receive, the images from the chart brought to it through the agency of her eyes.  The doctor checked her vision as he would a preliterate child by shining a light through her pupils and declared that her vision was good  Further back, when she had recently finished a course of chemo, I was taking her to an occupational therapist at the local hospital to see if she could recover her beautiful handwriting and the ability to read without losing focus.  At that point, her brain was doing a much better, but still inadequate job of deciphering images presented to it.  The therapist noticed that Carol was only comfortable walking down the long, wide corridor leading to the therapist’s room when she was next to the wall.  Apparently, that proximity to something large and solid enabled her to place her body in relationship to the physical space through which she was moving.

Because of our present living arrangements, sleeping on the sofa in the living room, I do not spend much time upstairs.  In the morning, I go up to our bedroom to get fresh clothes and to shower.  I visit my office in the room adjoining our bedroom to get used to the new desktop computer I purchased recently when my old one, with all of our financial records, as well as various writing projects, showed signs of its impending collapse.  I don’t know when I will start working more on it and less on this laptop.

When I do go into our bedroom, I see the new sheets on our bed, which I bought not that long   ago, when there was still hope that Carol would be able to overcome her fear and make it up the stairs. I walk past her dresser   On its crowded top are pictures, including, a shot of the teen-aged me, one of herself and older brother as children, and another of our daughter as a pretty young girl, but also  feathers in a little vase, a small drum, both indicators of her interest in things Native American, and in one corner shoved against the wall, a purse she will never again carry.

In fact, the whole house reeks of Carol’s presence.

I use the word advisedly, not in terms of its olfactory denotation, namely, a disturbingly unpleasant stink, say of rotting organic matter.  No not that sense.  Rather that the word also denotes the pervasive presence of that odor.  It is inescapable, it thrusts itself at you.

Through the objects placed in this house by Carol, she is everywhere.  She stamped her  identity with the art work depicting scenes of the Great Lakes, with the old violin hung on the living room wall, along with its bow, recalling her love of music, with the Kodak Autographic Junior on yet another wall bespeaking her love of photography, for she was above all a highly visual person, and all over on table tops and window sills her idiosyncratic interests, stones and  pieces of wood she picked up on walks, anything that struck a chord in her deeply imaginative mind, triggering memories of her childhood here, her fascination with all things local, lighthouses, evidence of native Americans’ ancient presence, and, perhaps above all, the topography, the bays, the hills and woods, the farms, for all of it she found a way to place it in our living space. (See and click on images below for examples.)


Law Books

But there are also the more mundane reminders of the once but no more, the two pairs of winter boots in our bedroom that she will never wear, the watch on her dresser bought on a birthday, worn hardly at all for it soon became clear she could not read the dial, the wonderful winter coat I found online for her on a spectacular sale, the books in her bookcase, anchored on the bottom shelf by her law tomes, the rest reflecting her interests in women’s history, women writers, and politics.

All of this is best described as bittersweet.

Sweet because of how these specific items remind me of our shared lives, how dominant she was in shaping our mutual environment.

Bitter because those specifics no longer connect to her mind  in any meaningful way.

And how sad that her fear prevents her from moving through and appreciating the environment she created.



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Caller ID

For now, back into my long established writing slot of late at night—it is now coming on eleven o’clock—when the house is quiet.  The dog has settled into her bed, Carol is sleeping, albeit restlessly, on the couch, and I sit across the room with my laptop on my lap.

I usually wake up at this time, my natural bio rhythm at work, but tonight will probably be different. Last night, Carol talked from about ten in the evening until four in the morning.  I tried several times to calm her down, to ease her into a sleep mode, but with little success.  Consequently, I could not fall fully asleep until she did, and then she was up at about eight.  I went through the day on four hours of sleep, including a shopping trip to town for groceries.

I have no idea what she was talking about all that time, as her words were not fully nor clearly articulated, and even when I did make out what she was saying, I had no context into which to put it.

Since Carol will turn sixty-five in January and thus go on to Medicare, we have been bombarded both by postal mail and by calls on our landline with pitches for supplemental coverage. Because my employer based insurance will provide that supplemental coverage for her, I am not interested .

I toss the paper pitches into the garbage.  I deal with the phone calls by paying attention to the caller ID.  Some of the callers making these pitches identify themselves, discernible even through the garbled attempts of the phone to state or display the caller’s name.  Others come in as just a toll free number.  For those, I pick up the phone and hang it back down again, just to get rid of it without providing an opportunity for a message to be left.  On rare occasions I will let the answering machine take the call if the name that shows up on caller ID is plausible even if I don’t recognize it, or if I am awaiting a call that might come in on a WATTS line.  Once or twice this process has yielded a conversation with a person I actually do, or should, know.

All of which brings me to why these calls are in my mind today.  There were more than the usual number that I permitted the answering machine to take, and so I was reminded to check our outgoing answering machine message to confirm that it was in Carol’s voice. I wasn’t sure because I had not listened to that message since we installed these phones at least ten years ago.

It turned out that it was her voice and that raised the question in my mind as to whether under present circumstances I should record a new message. The thought occurred to me that it might be a little strange or awkward for Carol’s sister or brothers, or one of our good friends, to hear her voice on the answering machine as though she were still functioning as she had been.  I recognize this is unlikely because I am home nearly all the time, and I will pick up the phone as soon as the caller ID tells me the caller is someone I know.

I don’t know if others would even have such a thought, but I am sometimes somewhat literal minded, and so it strikes me as perhaps not quite right to have Carol’s voice answering our phone when she might not at this point recognize the caller’s name.

But besides being occasionally literal minded, I also sense connections that push beyond the first thought.  And in this case, that is what happened.  I am reminded that Carol was determined to have her presence fully established in our relationship.  She did not hyphenate her last name, but she usually did keep her maiden name as a middle name.  She published her stories as Carolyn Johnson Lewis. That is how her name appears on her driver’s license.  And where possible she wanted her name on our various household accounts.  Thus, many of the bills we get come to us under her name, and she is listed as the owner of our joint checking and savings accounts.

This never bothered me.  And, in fact, when we were first together, she handled the bills while I was working several jobs to keep us afloat while dealing with child support payments.  And even, in retrospect, I understand that she would have wanted to be the bill payer anyway.  Coming as she did from a culture that even now is very traditional in its attitude toward gender roles, she desired to break out of that female subordinate position and establish herself on an equal footing.

She was, in short, insistent about establishing her own identity.

Which is what she is losing, thanks to her disease.

Made even more poignant for me as earlier today in response to my thinking about our greeting message on the answering machine, I played it.  And when I did, I heard her voice, both warm and professional and welcoming.

It hurt a lot.

If I erase that voice on the outgoing message, I will not hear it again.

And I will have taken another step, however grudgingly, away from the then and into the now.

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An Explanation

Regular readers of these posts will perhaps notice occasional time references that do not match the date of the posting.  I don’t know if this discrepancy is bothersome, but I thought it a good idea to explain why it happens.

I began writing this journal some time before beginning the blog.  Consequently, I have much more material than it seems reasonable to post in big servings.  Instead, I am extracting and posting shorter sections.  In fact, that is how I have been writing them, aiming for a certain self-contained rhythm of beginning, middle, and end.

To complicate matters, I sometimes write up what will become a post, but is not yet ready for prime time.  I put those into a separate list to which I return from time to time.  The Two Steves was one of those

So now, if there is a foot of snow on the actual ground when the post mentions the fall leaves turning, or a reference to a sport event long past, you will understand.  Those kinds of references occur primarily, but not exclusively in the italicized material in which I provide the actual time and place of where I was when I was writing what follows.

Whether I ever catch up to the point where what I am writing gets posted pretty much at the same time is an open question.  My intent is to keep this journal/blog going as my title suggests as a contemporaneous record.  My writing is just that, but the posting lags behind.

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Two Steves

Near midnight after a mixed day, half irritating, half enjoyable.  The irritations involved dealing with caregiver relief scheduling difficulties and insurance reimbursement issues.  Spent my morning dealing with both.  I felt for a while as though I were again the college administrator I once was, sitting at my desk, fielding problems as they arose.  I am good at that kind of work, but do not want to do it now.  The pleasure was my Tuesday afternoon lunch, which provided lively conversation on topics both trivial and important.

Late as it is, I want to work on this post.  I wrote it as a draft some time ago, and think now would be a good time to publish it.

The most difficult then vs. now tug of war in Carol’s mind for me is the one where she prefers her memory of me to the actual, present-day me.  On more than one occasion, she has consistently demanded to see her husband when I have been sitting right next to her, even holding her hand.

At those moments, I suppose, if she recognizes me at all, I am her caregiver, the guy who attends to her needs.  I can insist, as I have done, that the Steve she is remembering is the same Steve talking to her at that moment, but she is not moved.  She looks at me as though I have been talking in a foreign language, or if not, have been saying something so palpably false that she need not give my assertion a moment’s thought.

What this tells me is that her long-term memory is far more vivid than any present reality.  She seems to have, in fact, a tenuous grip on what I’ve been calling the here and now.  Why this is so, is perhaps because her brain simply does not retain much memory of the immediate past by which I mean minutes before the present moment.  It’s as if every moment in the present is a new dawn with no antecedent to provide context.

This might be a bit of an exaggeration but not much.  She does seem to retain memories of things that have bothered or annoyed her.  For example, at meal times, which she continues to take while still on the couch, I generally get her into something like an upright sitting position.  I do this by first swinging her legs over the side of the couch, and then gathering her in my arms and lifting her until she is at least mostly upright.  We repeat this procedure two or three times a day. And apparently it has left something of an impression in her brain, a newly minted memory, for she will react by saying, depending upon her mood, either a simple “OK,” or “not again.”  In either case, she recalls what we are about to do.

But this is the exception.  More generally is the rule that a minute or two after any incident, snippet of conversation, or activity, it is as though it never happened.

So, I can understand why she denies that I am who I am, preferring to dwell on her stored memory of who I was.

But understanding it does not make it any easier to deal with, especially when she is in some sort of distress.  There was an incident involving the physical and occupational therapist combining to work with her to see if putting a weighted vest on her would enable her to resist the rising panic caused by getting on to her feet, and in so doing they met significant resistance.  She became very angry and fearful at the same time, and insisted that she wanted her husband.

That I was standing right in front of her did not satisfy her.  I was not the husband she remembered.  I was this other guy.  On occasion, she acknowledges that there are two Steves, giving me the small victory of my name.

But she so clearly prefers the other Steve, the one she remembers.  I try to close the gap between the two by citing the facts of our lives together, where we met, when and where we married, where our daughter is now living in Minnesota, and so forth.  She easily accepts that all of that information is correct, even offers a bit of a smile as her mind fastens on to this or that detail.  Nonetheless, she does not connect any of it to me.  All of it belongs to that other Steve, and there it will remain.

It is all so understandable.

And, at the same time, maddening.

A thought occurs to me.  I see it but don’t want to deal with it.  Still, it will come back.  It must.

There will be a time when there are no Steves.


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