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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Fear

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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Like Sand Through My Fingers

Sunday night. I just watched an episode of Poldark on Masterpiece Theater. We always watched the PBS shows on Sunday night, Downton Abbey, of course, the mysteries, Sherlock Holmes, whatever was on. We would have after dinner snacks while we watched, usually humus and crackers, or sometimes those soft pretzels like those sold off carts back in New York, only these are frozen, thawed in the microwave after adding the salt from a packet. But tonight I watched alone, my company the dog who was probably disappointed there were no crumbs to be gathered from the floor.
Herein is the conflict I wage with myself. The more I fully accept the role of caregiver, the more I must let go of the shreds of our past lives together that remain in the occasional smile, or squeeze of her hand in mine, the good morning greetings we exchange during which I tell myself that she knows who I am, the snippet of conversation concerning our daughter now living in Minnesota, all these momenst pushing against my exchanging, in totality, my role as husband for that of caregiver.
It is not that I don’t want to take care of her, as best I can. Of course, I do. We used to joke that given the fact of my being ten years older, there would come a time when she would push me around in my wheelchair. Her disease has reversed that prognosis, a prognosis that did not include my losing my cognitive ability as she has. The idea was that my body would have weakened, not my mind. In our present here and now, her body is still quite strong as evidenced by the deep bruise she left on my bicep when in a panicked fear of falling she clutched me there.
She was always physically strong and capable, the first woman shaker driver harvesting cherries among the orchards on Old Mission Peninsula, competent behind the wheel of any vehicle, a splendid driver and horsewoman, a serious walker, and even more recently before her cognitive decline, she was out there shoveling the edges of our driveway missed by my snow blower.
I don’t think she has lost much of her strength. What she has lost is both the control of her muscles, and, more importantly, the confidence to use them.
Her continued physical strength contributes to my difficulty in letting her pre-disease self go, and accepting her here and now self, with all its difficulties. Part of me, a persuasive part, insists on trying to retain some sense of normalcy in our daily lives.
That is like clenching my fingers around sand that sifts through my fingers.
It can’t be done.
But the friction of the hard grains against my flesh is its own reward.

I have yielded to some realities. Some time ago, I bought her pants in a smaller size to recognize the weight she has lost, a purchase aided by the advice of my eldest daughter then visiting with her family from New York. Those pants now rest, neatly folded up in our bedroom. I no longer clothe her every day. Given her incontinence and inability to be easily transported to the bathroom, it just makes more sense, as my younger New York daughter suggested when she visited a little time after her sister, to keep Carol in night clothes. So, I bought her two new night garments, appropriate for fall weather, and will add to them a couple suitable for the cold winter approaching.
But, to this point, I have not given in to the suggestion of renting a hospital bed, which would make tending to her easier than her current residence on the living room sofa. I see that advantage, but it is insufficient to overcome the feel of a hospital room that the bed would impose on our living space.
Presently, we both sleep on our L-shaped sectional, and I savor the physical proximity, even though we are not side by side. I hear her breathing, and yes, I also hear her responding to auditory hallucinations, and sometimes, a frightened call prompted by a sense of falling even when she is lying flat on her back. In the morning, I bend myself around the corner of the L to get near enough to her to hold her hand, or stroke her cheek. And, yes, she sometimes rejects those gestures as an unwanted intrusion of the here and now into wherever her mind has carried her, but most times she is accepting, and I feel comforted.
For the most part, our lives follow the same dull routine. In this regard, I am reminded of an observation offered by Thoreau toward the end, I believe, of Walden concerning how easy it is to fall into a repetitive pattern. He notes, to his surprise, how quickly and beneath his conscious notice, his feet produced a path, or perhaps more to the point, a rut between his cabin and the pond as he traveled back and forth each day for his ablutions.
And so it is with our lives with very little variation from day to day. But every once in a while something occurs to me that pushes its way through the dull routine and obliges me to deal with this vexing conflict between the past and the here and now. Such a moment was prompted by my seeing in my email inbox a notice presenting the agenda for the upcoming meeting of the local historical society.
Even before we moved here from New York, Carol’s father, a local historian invited us to come along to a meeting of the historical society. Although I was then still just beginning to learn how to navigate the culture shock caused by introducing my Brooklyn formed self into the wildly different mores of rural northern Michigan, I have always enjoyed learning about history wherever and whenever the opportunity presents itself. Carol, although she never said so, savored the chance to share her fathers’ interests and join them to her own.
Once we became resident here, we quite naturally continued attending the society’s meetings. We were, in fact, the only members of Carol’s extended family who did so, and continued our participation in the society after Carol’s father lost his battle with pancreatic cancer. And then, not for the first time, in fact in another instance of a familiar pattern in my life according to which I, without any obvious ambition, wind up in a position of leadership, found myself president of the society.
All of which is preamble to the moment when I saw the meeting announcement. I decided I would like to go, mingle again with the folks I had not seen for some time, and just get out of the house for a while and leave my caregiver responsibilities for a couple of hours. None of that gave me any pause. There was, of course, the issue of finding someone to stay with Carol. That, in itself, did not raise my conflict.
What did cause the conflict to raise its troublesome head was what should I tell Carol. Deep into our rut, I never go out in the evening. And I always tell her where I am going, even if it is to walk across the road to our mailbox. She would love to go, I thought, and would be seriously disappointed if she were to stay home while I attended a meeting of the society her father had helped found, and which she had served as co-editor with me of the organization’s newsletter, and had, in short, been more strongly invested in the society than I had been.
I was trapped in the past, and unable to see myself in the here and now. My concern about her feelings was based on the woman she used to be. The woman she is now hardly remembers the society, and even if she were upset at my going, as unlikely as that would be, she would in all likelihood not remain unhappy for more than a few minutes as this incident like all others simply would not find a foothold in her memory.
When I did tell her where I was going, she offered a glimmer of a smile and nodded.
Unaware, she too, was so deep in the rut she could not see over its top.

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Publication Correction

“”Like Sand Through My Fingers” was inadvertently published early, and has been rescheduled for its correct weekly date tomorrow, November 11th.

To keep things moving along for those who have already seen that post, I am scheduling the next one “Two Steves” also for November 11th.

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Who Is This Person?

Writing on my laptop after a late breakfast.  Carol is dozing on the sofa.

In a unique way, as only Kafka can do, his “The Metamorphosis” explores the question of a person’s identity.

Its first sentence announces without preparation or fanfare that Gregor Samsor one day wakes up in the form of a giant beetle. Within this form his brain is still human. He awakens from “troubling dreams” in his new shape, but his mind is fixed on his getting ready for work as a traveling salesperson. He must, as usual, catch his train.
Thus the story starts. It proceeds from there with Gregor retaining his human brain while his family figures out how to deal with his transformation. Their question, no doubt, is whether they should consider that physical being Gregor. If not, what?
Read the story here if you want to see what Kafka does with it. His concerns in writing it are far different from mine are in putting it into this context. I do that only because it is an exact negative image of my situation where Carol’s body, except for some weight loss is exactly as it was while her brain, and therefore her sense of herself and her surroundings are not.
The question raised by the story that I find so apt is what we mean when we say, pointing at a person, “This is Joe or Jane Smith.” Do we mean the physical presence we are looking at? Surely, that seems right. But what if the person with that name no longer knows who he or she is? Or perhaps more to the immediate point, what if this person doesn’t know who you are? Or where he or she is? Or what year it is? What if, in fact, this person’s grasp of the here and now is largely gone.
If the person’s grasp of the here and now is entirely gone, if the person is living in an evanescent present moment that disappears from memory as soon as the moment passes, then it is somewhat easier to begin to think that the person’s identity has been compromised because for a person to have an identity we usually assume that some self-awareness as well as some relationship to the external world is necessary.
The question in that sense goes in both directions. Who is the person within the body of my wife? What is my relationship to her? And from an egocentric point of view that question might even be more compelling. Am I still her husband, or am I just another caregiver, albeit one who is her most constant companion?
Who is this other person living with me in our house? Is it even right to say “our” house? I don’t think that is begging the question.
It is the question.
Clearly, there is a legal answer to this question. This person is the woman I met thirty-five years ago in Suffolk County on Long Island, NY, who added my last name to hers when we married four years later, and with whom we have had a daughter now living in Minnesota. The clarity of the legal point is buttressed by the fact that I have begun acting on her behalf based on the power of attorney document she signed fifteen years ago when nothing like the present situation seemed remotely in view, signed just as a precaution against that faint possibility, which has now become our everyday reality.
So, the legal answer to the question is immediately clear as far as it goes. But it doesn’t go nearly far enough.
As if to underscore that point, Carol frequently says in a most plaintiff way that she wants to go “home,” which I take to mean that place her memory remembers, not the physical structure we together bought almost sixteen years ago, the title for which bears both our names, and in which we have cohabited until the present moment. The fact that this house bears the unmistakable imprint of my wife’s tastes and interests is palpably obvious to me or anybody who knows me. Left to my own devices the décor would be decidedly different. The fact that she no longer recognizes all the touches she added only underscores the maddening pain her disease inflicts.
Even more troubling on an emotional level for me is that she most definitely knows my name. She calls out “Steve” whenever she is frightened, or troubled, or just want to talk. But it is not at all certain that she associates that name, so firmly fixed in her memory, with my actual physical presence. I often sense she is disappointed when I show up in response to her summons.
As though she were expecting somebody else.

I am some kind of presence in Carol’s life, one that probably does not come into clear focus in the haze of her flawed perception of the here and now.  On the other hand, the Steve of her long-term memory is still sharply etched

I recognize this disparity between memory and immediate reality.  But emotionally, I received it as a knife twisting into my heart.  How could she be so indifferent to my feelings of loss, even of betrayal when she fails to acknowledge me as her husband of more than thirty years?  Of course, that is an absurd complaint on my part.  But it is genuine nonetheless.

Motorcycles just thundered by on Center Road, as they often do on this Peninsula.  I check Words With Friends to see if my niece or grandson have made a move.  Neither has.  I remember today is Yom Kippor. Unlikely either would be playing today.  As a largely non-observant, secular Jew, living in an overwhelmingly Christian place, it is easy for me to forget this most important Jewish holy day. Especially since I no doubt have a lot to atone for.

A genuine but absurd complaint.  As ridiculous, in its way, as Gregor Samsor, now a giant dung beetle, wanting to pick up his case of samples and catch his usual train.  Dealing with this dread disease puts you in the world of the absurd where there are no answers.  I suppose you could say that the one answer to a caregiver like me is to acknowledge that my job is palliative care, to make life as comfortable as possible for the patient.

That is all well and good.  But there does not seem to be palliative care for the caregiver.

 

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Speaking the Unspeakable, A Contemporaneous Journal

In Better Days

You see the distracted pedestrian step off the curb without looking for oncoming traffic. You witness the startled face of the driver of the car barreling down the road, hands tightening on the steering wheel, eyes looking for a way to avoid the inevitable. There is none, the brakes squeal, horn blares, and then there is a thud.
This is an illustration of my life at this time.
Every day, I observe this accident scene unfold in excruciatingly slow motion. My wife Carol is the pedestrian. The driver of the vehicle bearing down on her is her disease.
She has dementia.
That is a scary, if not evil sounding word. Its root comes from the Latin combination of de, out of or away, and men¸ to think. Putting them together you get “out of the mind,” and by extension “raving” or “mad” in a typical dictionary entry.
But those are inaccurate, at least in my wife’s case. I claim no expertise beyond that. She sometimes expresses anger, but she does not rave. That term is a melodramatic overstatement, and, I might add, it is pejorative. And she is not mad or “out of her mind,” whatever that means. In fact, she lives very much in her mind. The problem is that from within her mind she is not usually in strong contact with the here and now. Rather she seems to live among random long-term memories, which are quite accurate, and thought that appear to be the product of the wonderful imagination that enabled her to be a prize-winning writer of short stories.
Moving from etymology of the word to its medical meaning does not produce a great deal of clarity. The expert neurologist in Ann Arbor we consulted was not quite sure exactly which label to put on my wife’s disease since dementia describes the range of symptoms of a malfunctioning brain, those symptoms varying depending on which part of the brain is impaired. Impairment to different parts produces different symptoms, indicated by different names, such as Alzheimer, Parkinson, or frontotemporal. In my wife’s case, apparently, the neurologist could not pin down with assurance which part(s) of her brain were being affected, thus the inability to label with precision.
We could have returned to Ann Arbor to let him try again, but that seemed pointless. The two hundred fifty-mile trip, plus a night in a motel, and then back again would have been a lot of stress for no particular gain. Whatever the type of dementia, the disease is incurable. The same medications, of limited use, would be prescribed for each of the subcategories.
And I don’t care what the label is. I live with the symptoms.
In the impending car crash analogy, I note that the pedestrian does not even look up despite the blaring horn and squealing brakes. Rather she totters along, does not look at the steel bearing down on her. And for that matter, there is no horn nor squeal of brakes. All is silent.
She is unaware. She no longer properly processes images or sounds brought to her brain by her still functioning eyes and ears. These organs continue to work reasonably well. But a buildup of protein impedes the passage of their information in her brain.
That is what causes her dementia, her lack of connection to her environment, her inability to retain in her short-term memory what she does perceive, or even what she thinks, or says.
So, let’s change the terms of the analogy to something else, to, let us say, the representation of the cognitive disassociation with the here and now, a withdrawal into shards of old memories and fragments of imagined narratives.
It is important for me to remember, and to note here, that almost anything one can say must not be understood as absolute or constant. It is a truism that the degree of impairment and resulting symptoms does fluctuate from day to day, or even moment to moment. Its overall dimensions and direction, though, are clear enough.
Finally, the analogy suggests speed, whereas dementia works its terrible chemistry more or less slowly. In my wife’s case, faster than expected. More of that later. And the climactic thud of the crash, steel mashing flesh and bone is nothing like the gradual disengagement of the mind as it retreats into itself, progressively unable to do the simplest everyday tasks. Also, the driver desperate to avoid the collision is nothing like the unknown agent that causes brains to cease functioning. In fact, the driver of the disease is best understood as disinterested, perhaps even bored, with its destructive power. And that is its ultimate horror.
Thus, this analogy takes us only so far.
But in the absence of anything better, it is all we have, and since I am trained in, and for many years taught and wrote about, literature, my mind turns to it for a way to grapple with this situation, to find a way to make some sense out of it. To reason with the unreasonable, to speak the unspeakable. And in that respect, literature serves up a wonderfully apt guide in the person of the brilliantly weird Franz Kafka, one of whose stories is peculiarly apt to get one’s hands around this disease, to squeeze hard, to hold it still long enough to begin to understand. And if not to understand to find some peace, to be able to stop clenching your fist and howling.
Supper preparation calls.  Kafka will have to wait.

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