TRIBUTE

The Tilley hat, the binoculars, hearing aids just visible, the almost-grin:  Ken!

Ken died on October 30th.  Still almost a month later, it’s hard to write or say that sentence.  I console myself with the thought that if he were alive, would it be the Ken of his last days?  Of the month of September?  Why not wish for the Ken of a year ago, or two, or three?  It’s then that I realize I may as well hope to be whisked back ten years.  Why not?  It makes no sense.  Still…it’s just as hard to write or say that sentence.

The weekend after Thanksgiving there was a celebration of Ken’s life at Middlebury’s Waybury Inn. 

This was the place, but on a sunny summer's day, not in gloomy November.

Several of us spoke.  This is what I said:

The world is already a different one than Ken knew.  I can’t really believe that time has passed since October 30, the day of his death.  The election happened. That was enormous. I went to Washington for a weekend and I wanted to tell him about it.  I bought a dress he hasn’t seen.  The leaves fell.  It snowed.  The outdoors looks different too. 

I’ve been gathering and reading all his notebooks.  He didn’t like me poking around when he was alive.  They remind me of things I already knew.

Ken was always an explorer of the natural world. He was filled with curiosity.  He was an observer. He wanted to understand the universe.  He wanted to understand the behavior of an insect.  He loved to quantify things.  Ken was intense about every pursuit.  And he was always modest about it.  He never boasted.

In typical winter gear

***

We had adventures together.  Many trips we took were more than just visits to places.  They were explorations, they were adventures, sometimes they were really adventures.  We collaborated on planning them.  Our last big trip to the Galapagos happened only a year ago. That one was his idea.

His interests all through throughout his life spanned an amazing range.  I loved the fact that he was always up for something, something new.  The sports he tried out included technical climbing, hang gliding (only briefly, thank God), rollerblading, scuba diving.  Some he stuck with for years:  fly fishing, cross-country skiing, snowshoeing, downhill skiing (even last winter), running, bicycling, hiking.  He took long walks as recently as September.

***

I’ve been reading through all his notebooks. There are a lot of them.  Most of them are half-filled.  When he had something he wanted to make notes about he grabbed the nearest one.  When he was in a shop that sold small notebooks he picked up more of them.

Ken 's notebooks

A lot of the things he took notes on were about science.  He wrote:

“For thirty years I worked as a physical chemist, but I don’t consider myself a scientist.  I am a fan of science, an amateur in the original sense of “amateur” ––a lover of science.  Much of the science I love is not chemistry. Had I been better at math, I might have been an astronomer or a physicist.  Chemistry seemed to sit in the middle of all this.  The child in me was delighted by the smells and colors:  the marvel of electricity generated by chemical batteries, and the explosions and pyrotechnics.” 

But he really was a scientist at heart.  He wrote:

“It’s the sense of discovery, the rhythm of theories and ideas which enlarge, encompassing one another.  A cycle of new insights, overturning earlier insights, only to encompass them.”

On walks he would have a magnifying glass so he could examine a bug, a mushroom, animal scat, or a lichen.

He was a scientist too when he was cooking, always trying the same dish in different ways, never satisfied merely to repeat it, even if I told him it was perfect just the way it was.

And then there was art, and opera, music, and the theater––until his hearing got so bad even headphones didn’t help.

In Patagonia

***

The notebooks are full of lists–shopping lists, to-do lists, lists of interests to follow up on, lists of phenomena he wanted to understand, lists of animal or plants he observed, lists of behaviors he wanted to improve upon.  There are short essays on a huge range of topics, and there are travel notes.  Some of his lists are interrupted by recipes.

***

More than ten years ago, after he was retired, he took a writing class in Cambridge (taught by a person some of you may know, with the wonderful name of Mopsey Strange Kennedy) and he began to write often, mostly about his early life.  After that he took a poetry class.  Both these classes helped him look back on his life, especially his early life.  There was a reason for that. 

As some of you may know, he was haunted––scarred even––by the death of his birth mother.  After she died, an aunt moved in to take care of him and his brother, but after a while she moved away to live her own life.  His dad, who by now had begun drinking more heavily, sent both boys to live with their maternal grandparents who lived nearby.  It wasn’t long before his grandmother died, and not long after the grandfather he’d begun to care deeply about also died.  Ken wrote about these losses again and again.  Here is an excerpt from his notebooks:

“I was young, three and a half years old, when my mother died in childbirth.  Seventy-five years later I can remember the time.  My brother was brought home from the hospital, and I have the image of a few women carrying him upstairs at our house.  I can see myself as a small figure behind them, as if I were on the ceiling looking down at that small boy climbing behind the group.  That image, and a powerful sense of loneliness and abandonment, was compelling.

“In middle age I met a neighbor from that time.  She remembered me, and my telling her that my mother had gone to heaven.  I recalled fantasizing as a child that I could climb a tree and go to heaven to see her. She recalled how I told her I was going to go up into the sky where she was, and that I had looked like a little old man. I remember seeing a movie about a tree in front of a house where climbing the tree was linked to a grandfather and death.  I have always liked the view of great spreading trees with lower climbable branches.”

His actual mother was never mentioned in his childhood household.  It was as if she’d never existed.  That was only part of his story.

Christopher, Ken, Christine (above), Bill, Luke (below)

***

He was often pessimistic, sometimes depressed.  But he also wrote this.  He titled it “Me, Myself and I.”

“I want to tell you about myself.  It’s complicated because along with myself and me, there’s also my mind which has a mind of its own, so that’s four of us.  That as far as I know.  There could be more lurking back there.

Myself doesn’t talk much, although he wants to.  It can be hard to drag anything out of him.  He’s ambivalent and sulks a lot.  He’s not that happy a person mostly, but when he is, it’s a rush for me.  I feel like dancing then.  And laughing.

“I’m pretty gregarious.  I like people, I like the out of doors.  I like parties.  I like to fish and ski.  I liked my job when I had one, and I like not having one now.  There’s not a lot I don’t like or can’t tolerate.  I don’t like mean people.  I don’t like being pushed around.  Mostly I enjoy my life.”         [He wrote that in 2004]

Summer in Maine, three years ago

***

In his notebooks, the notes, and the lists, drawings and the essays, are a window into his mind.   They tell me how hard he was working to corral his wide-ranging interests as his brain was changing. 

One to-do list reads as follows:

 1:  Gather firestarter wood

 2:  Draw birds

 3:  Clean trash bin

 4:  Saturday night Norma’s birthday dinner

 5:  Check re Bill for lunch

 6:  Higgs boson

 7:  Is there anything special at the center of the universe, galaxies, nebulae?  All flying away from the Big Bang? 

He made notes about what he was reading to help him remember.  There are notes on the plots of books, and other things, like:

o   “How much dark matter is there?

o   The five pillars of Islam

o   Temple Grandin’s “Animals in Translation”

o   The poetry of T.S. Eliot ”  (and comments on Eliot’s metaphors of loneliness)

He thought a lot about what was going on in his mind:

“I am remembering a series of sketches at an Alzheimers [art] exhibition.   First there was the initial drawing.  The initial drawing begins to change.  Face fragments and gaps appear, then distortion in a series of images, and a shattered visage at the last.  Captured is a slow loss of faculties, of interests, especially by the gaps in the image where what was, is gone, irretrievably.  Humanity is lost in the void.”

Elsewhere he wrote:

“Instead of the flotsam (ideas) following the current of my thought, they are trapped in the whirlpools on the surface; circulating, not following the train of thinking.  Part of brain that enables sequential steps is impaired.”  [2013]  

“What goes on in cognitive impairment causes a loss of initiative, prevents movement on complicated tasks.  Same reason I can’t dance well.”  

On the next page he wrote: “Learn to dance.”

Then this, on a page by itself in 2005 he wrote:  

My soul’s wings are clipped and

A devilish cat approaches in the night.   

***

Everyone who knew Ken, those who knew him well and all those who came to know him, from Vermont to Australia, knew he was a man of “sweet strength and kindness.”  (That phrase isn’t mine; it comes from a sympathy note.)  As he grew older he had compassion for every living thing.  He liked sad stories less and less.

Ken with Harry who was by then about 15 or 16.

The first thing I ever noticed about Ken was his laugh.  It was infectious.  It was filled with joy.  I can still hear it.

There are lines from an Irish ballad that have been haunting me:

Many the mile with thee I’ve traveled,

Many the hour, love, with thee I’ve spent

I dreamed you were my love forever

But now I know, love, you were only lent.

That was all I said.  There could have been so much more.  I forgot to mention what he did for me, how much richer and fuller my life was because of him.  How much more fun.  Until the last few months. 

****

There were many words other than mine spoken on November 26th.  Not all were written but happily Chris Huston’s were:

It seems appropriate to begin by recognizing Norma’s significant efforts to care for Ken over the last several years and more specifically in the last few months.  Yes, sure we have all seen Norma get a little short with Ken when he would be “forgetful,” she really had the best intentions of keeping him on point, for as long as possible.  His passing was as perfect as one could wish for- in the comforts of his own home, surrounded by his family.  Norma made sure of that.

I have known Ken for the last 20 plus years as his son-in-law

Through the years and more so recently, I could always engage Ken in a conversation about fly fishing.  The technique of the cast, the selection of the fly, and the sound of the river - Ken taught me how to fly fish, I just wish he taught me how to catch fish.  He was always content having spent time on the river and perhaps getting a strike or two, maybe losing a few flies in the process. 

Not with his usual fly fishing friends, a guide instead this time.

Ken was a man of process.  He loved the process of cooking a fine meal, perhaps taking all day to prepare it.  While he enjoyed wood working, it was really about the process of looking at the wood, studying the grain under his pocket magnifying glass after he sliced through it.  Process, not always focused on the end product, process was paramount.  Even stacking his cord wood, the process of drying, and of course the process of lighting and maintaining the perfect fire in the wood stove, were all quintessential Ken characteristics.  Sometimes it would drive Cliff and me crazy.  We would have a project that typically had a sense of urgency.  Ken was perfectly happy to STUDY the issue, maybe even experiment with several options, taking days to find just the right solution.

He embodied the scientific mind.  He exuded SCIENCE in everything he did.  Some of my most fond memories that I know my kids will carry with them through their lives will be of Ken showing them insects or minerals or plants under the microscope.  Deeply engaged in scientific literature, he was often so immersed in his book that everything else was background.  Perhaps that was the one occasion where his hearing impairment was an asset, just for that moment. 

Les and I were so pleased and quite surprised when Ken and Norma announced they were moving to VT, to our street…NEXT door in fact!  Ken’s happiness with his decision to move to be closer to us and Bill and Bob, was expressed nearly every time I saw him.  He would marvel at the beautiful landscape, content with watching the changing seasons, the incredible sky drama, or the stunning sunsets that seem to be the norm here.

On the left, holding Harry

One of Ken’s most memorable roles was that of the crazy Mr. Tickle Monster.  Often Mr. Tickle Monster would arrive on the scene at the most inappropriate and unwanted times…such as our kid’s bed time.  He would, without warning, begin with a low growl, then roar with impressive volume sending the kids shrieking in fearful delight at their impending doom, and thus delaying their bedtime routine.  Thanks, Ken, for that.

You know how some people just get more mean and grumpy as they age?  Ken just became more kind and gentle.  He could not hurt a thing.  He was a beautiful caring man who was such a wonderful grandfather to our kids.  We are all the beneficiaries of Ken having touched our lives.  We love you Ken and will miss you very much.

FALL, FALLING, FAILING

A field on the Robert Frost Trail

There is no news from here.  Not really.  Hasn't been since spring.  The seasons march on.  Now it's fall.

It’s 3 o’clock in the afternoon.  I am at the Middlebury Snow Bowl for a celebration of fall.  I will ride up the chair lift to the top to see peak foliage from the best vantage point.  Sure, there are higher mountains than Worth Mountain, but you don’t have to be on the highest peak to get a sweeping view of the mountains’ autumnal beauty.  The tree colors haven’t fully reached the Champlain Valley yet.  We are a half a planting zone below.  (Gardeners know exactly what that means.)  It’s a free afternoon for me, and I am even enjoying the long wait in the lift line, and the leisurely pace of the chairs heading up and down the mountain.

Heading up Worth Mountain at the Middlebury Snow Bowl

It’s 3 o’clock in the morning.  I hardly know where I am when I start out of sleep.  There were footsteps on the other side of the bed.  Shuffling footsteps on the rug.  If the scuffing leads to the bathroom, that’s probably all right, I think.  If they pass the bathroom door, they’ll be heading for where I’m sleeping, and that’s not so good.  It means there’s something going on in Ken’s mind, a dream perhaps, or maybe something in his imagination and he’s following it. I’ll have to wake up fully to find out, maybe locate the medication and give him some, lead him back to bed.  Good, he’s found the bathroom.  It’s lit by a nightlight, its light shining through the small windows on either side of the door, so it should be simple to locate.  Still, he sometimes doesn't find it.  If he’s in there for a long time–long, as measured in my foggy brain–I’m going to have to get up and check.  See what he’s doing.  There are a couple of possibilities, but I’m hoping for only one or two of them.  I’m not sure I could deal with anything more complicated.

 

Dark morning fog, high and low, seen from the door

It’s 8 o’clock in the morning.  I’ve been up for about two hours.  Skyler doesn’t let me oversleep, although occasionally he’ll wait to nudge me until 7 or so.   A “caregiver” (paid helper) was to have come at 9 o’clock but she just texted she’s not going to make it today.  This is the second time she’s let me down.  After a night with little sleep this is especially hard to take.  I am impatient.  I am a mess.  I take refuge in my 1,000-piece jigsaw consisting almost entirely of complex tile designs, arches and columns from a photograph of the Alcazar in Seville.  It’s utterly mindless and yet absorbing.  I am now intimately acquainted with the patterns of the tiles, patterns that barely registered when I saw them for real.  The puzzle wasn’t nearly hard enough.  I’m nearly done.  Gotta get another one.

Only 1,000 pieces

It’s 8 o’clock in the morning.  I rouse Ken from bed to give him his morning medications.  I help him shower, dress, make breakfast, get him comfortable for a morning nap.  He is trembling, and wants a hug, a big long hug.  When he does this I feel he is in the present, he is “here.”  He knows.  A couple of days ago he said, “I feel shattered.”  Another time he said, “I’ve come to the end of something.”  This morning he says simply, “I’m a mess.” 

It’s whatever o’clock.  On some days routines–medications, changing of clothes, cleaning up–don’t happen as easily as at other times.  This is understandable.  Who wants to be told what to do all the time?  Who wants someone telling you “Let me do it, it’ll be easier,” when you think you can perfectly well button your own shirt, or pull up your own pants.  I’ve turned into a bully.  I get impatient and sometimes I show it.  When there’s a mess to clean up I make noise about it.  Shit! Damn!  Sometimes I yell.  But I have to clean it up anyway so complaining is pointless and only makes things worse for both of us.  You would think I learned once and for all by raising children, but  I need to learn it all over again.  Maybe I never learned.  Maybe I was never good at this.  If I sleep well the night before, I’m much better behaved.  I feel ashamed at my impatience.  I try to be better, to be good.  How good is good?

It’s 6 o’clock.  We ate out for the last time maybe a month or so ago.  Dinner was at the Vergennes Laundry that had just begun serving dinners with an interesting menu, small creative dishes of small plates, like tapas.  Although sitting wasn’t very comfortable for Ken, he managed.  I feel like that happened very long ago, like last year.  Now colon cancer forbids him to sit through a lunch, a dinner.  He stands up several times, sits down and tries again.  Pain pills don’t seem to make this any easier.  Dinner home is quiet, without conversation.  I miss conversation.  If I get to thinking too much about all that the dinner lacks, the food turns to gravel in my mouth. 

Robert Frost poem on the trail

It’s 3 o’clock in the morning.  Something wakes me up.  It it Ken moving around in the bed?  Maybe it was only the dog stretching or licking himself.  Or coyotes howling outside.  This is when my mind starts churning.  For the hundredth time I think about how often he used to say he never wanted to live like this.  Yet every day he lives like this.  I am helpless to assuage any of it.  I solve nothing.  I understand nothing.  What is happening to his body?  To his mind?   We think we know, but we don’t understand.  What percentage of behavior is caused by medication, and what is not?  I asked this long ago but I still have no idea.  When he trembles, is it fear?  Or is it muscle spasms?  When his eyes are half-lidded, is he is here?  Or is he there?  Questions, only questions.

The labyrinth at a Spirit in Nature trail off the Goshen Road

STAGES OF MISSING

Summer is getting old.  Because there hasn’t been much rain the erratic yellowing or deteriorating green of the trees seems like more like a sign of decline than the natural phenomenon of fall.  I’m done with it.

No, that’s not true.  It has nothing to do with the season. It has everything to do with Ken.

(See “Missing Person” July post)

It’s as if his physical body and his mind are at war.  Sometimes the cancer has the upper hand, and seeking relief from pain is the issue that sets him apart.  A need to be comfortable.   To be able to walk around while others are sitting.  Small adjustments.  Other times his mind takes him away from reality and pain isn’t what’s foremost.

When he asks me in the middle of the afternoon or in the middle of the night–it’s random­–“What’s happening?” or “When are we going home?” or maybe:  “Where is everyone?  Is someone else here?” I can feel tears pressing just behind my eyes.  That’s where they are most of the time, pressing, filling my head and ready to materialize at any moment.  Other times he knows just where he is.  He hasn’t failed to recognize anyone. Could it be that's still to come?

Ken used to say in no uncertain terms that he would never want to live if his mind were slipping away.  Yet he is.  His body is slipping away along with his mind.  It is also clear that the person he was, the person who would not want to live with a mind that was slipping away, is not the person he is now.   This present person doesn’t have ideas like that.  This person lives in the now.  He accepts what is, because there is no other reality.  When that other guy, the one from the past, appears–and he does sometimes, with full awareness–I feel it like a knife wound, the full tragedy of it.  Is it better to forget?

People lie and steal for drugs like oxycondone and percoset.  They’re looking for peace, joy, thrills, happiness, calm–something better than what they’ve got.  They take the drugs to get high.  Where is the land of “high” anyway?  Why couldn’t those same drugs Ken takes for actual physical pain make him high?  High would be nice.  High would be good.  Do they bring peace, joy, thrills, happiness, calm?  No!  All they do besides mitigating the pain is make him groggy, sleepy.  They push the pain into the background.  Until the dose was increased he slept less during the day.  Now he sleeps more.  Much more.  Sometimes I see him sleeping on the sofa and he is all folded in upon himself, as if the air has gone out of him.  An image of Stephen Hawking comes to mind, and I shudder.  Would it be better to be in more pain but awake?  No!  Isn’t it better to have less pain and sleep more?  No!  It is a trade-off about which there is no real choice and no happy result. 

We sit on the porch and look at the sun setting behind the mountains.  The view fails to soothe.  Jokes fail to connect.  Stories fail to make sense.  Ideas become fragments of thought.  Conversations are haphazard, unsatisfying.  I point out a stick bug outside attached to the screen, an unusual sight.  He turns to look at it with an appreciative smile, but his admiration of small living things is only half there.  It wasn’t more than a month ago that I was away for a good part of an afternoon, leaving him alone, not something I do these days.  Worried that he had been alone for several hours I came back home to check and found him having a lovely time:  his microscope was on the rear patio and he had been absorbed in examining a bug.  This is how he always was, and I knew that at that moment on that particular afternoon he was okay. 

Walking stick on the outside, my hand on the inside for scale.
This bug hung around the outside of the porch for days.

Strange things happen:  I make a lemon pie and Ken cuts slices that he places on pieces of toast.  He gets up early one morning and starts to make coffee but in distraction fills the dog’s bowl with instant coffee.  This entails a visit to the vet for induced vomiting.  At 3 AM Ken wakes up, gets dressed and heads downstairs.  We watch a DVD of “House of Cards” but Ken finds it makes him anxious, walks out.  (To tell the truth, this reaction doesn’t seem all that odd.  I get the same feeling about our current political reality.)  Now and then he forgets steps of personal care.  He becomes obsessive about small things, like locking the doors, folding notes into small squares, closing the sun umbrella, tying up the hammock when it’s windy, tightly wrapping up the package of bread on the counter. I realize these are small protections:  they are ways of keeping things safe.  It reminds me of how he long had a habit of putting important things in “safe” places.  Things like a Christmas gift, tucked away so securely that when the date arrived he couldn’t find it himself.  Security.  Funny.

MISSING PERSON

[Photos are irrelevant to the text.  They’re only decoration.]

An impossibly romantic garden ornament.  (Spain)

November 2007

The very first time it happened we were in Puerto Natales.  It’s a small city in Chilean Patagonia, a jumping off spot for trekking Torres Del Paine National Park which we were planning to do in the days to follow.  Puerto Natales is a windswept place with everyday gusts often strong enough to knock over anyone not holding onto something.  Trying to pull open the door of a restaurant you would be convinced there was someone on the other side pulling it closed.  Anyway, we hadn’t yet done our trek, an expedition that was appearing more formidable the closer we got to the start. Then, too, most of our fellow hikers were younger than we were.  We were to cover some 65 kilometers over five days, and the weather might be awful even though it was spring, going on summer.  We had already encountered snow on our first trek near Chaltén, in Argentina.  It was intimidating. 

Ken and I and our seven fellow trekkers were booked into a somewhat threadbare hotel. The electricity went off once or twice, and our small room didn’t encourage staying indoors, so we had spent our spare time walking around the town, covering most of it in a half hour’s stroll.  Early one evening Ken said he was going to take a short walk.  “Back soon.”  I stayed in, reading, more than likely.  A longer time than “soon” passed before he returned.  He told me he’d had a memory lapse.  For a short time he completely forgot where we were staying.  Or where he was.  It was all a blank.  Finally something familiar along the way caught his eye, and he found his way back.  We were both shocked. I cried.  We hugged each other.  I believe at that moment we both recognized this was the beginning of something, and whatever it was, it was going to matter. 

Then we put it out of our minds.  The trek went well, the weather was beautiful.

It wasn’t until weeks later that I thought back on an odd moment during our first trek, the one in Argentina.  We had been hiking there with fellow trekker Bill Kan (who ended up with us in Chile as well) and our guide, photographer David Albert.  On the last leg of our final day’s walk the three of us noticed Ken walking crookedly, in a kind of comma position.  The obvious reason should have been a misaligned pack, a muscle cramp, a backache––something.  But, no, there was no problem. Ken could easily straighten up, but he said he didn’t want to.  He wanted to walk this way.  Of course we all laughed about it, but it nagged at me.  David was worried about how Ken would manage our next trek, and arranged for him to get a set of trekking poles the next day.

When the mind begins to take odd turns, does it also affect the body?

April 2012

A lot of what you do when you’re at home is mixed up with the routine, ordinary stuff.  Travel, on the other hand, sometimes sharpens the focus on behavior that doesn’t fit the pattern.

One Sunday, a day before we were to fly to Vienna and St. Petersburg, Ken suddenly had trouble walking.  There was no identifiable cause or source of pain.  He said he needed a cane, and right away.  It was short notice as we were flying out later that day.  But we managed to find one.  Once in Vienna he was able to walk, with the cane, but very, very slowly.   Was he able to move a bit faster?  No, because a slow walk “feels good.”  There was no use trying to pinpoint a cause. We flew on to St. Petersburg where at first Ken continued to walk very, very slowly, at moments hardly moving at all.  It took fifteen minutes to complete one short block.  A day later his walking speed picked up.  By the time we left Russia five days later the cane was a thing of the past. Back again in Vienna the next week his walking was completely normal.  We walked everywhere.  The cane has collected dust ever since.

Was this a physical manifestation sign of something in the mind? 

On other trips between 2007 and 2012 nothing unusual happened.  No, wait.  There were incremental changes.  By 2012 I realized Ken was growing more dependent upon me for planning and recalling details of our itinerary.  By 2013 he might have an idea of where he wanted to go, but the arrangements were all up to me. 

Part of the perennial garden, late June

2007?

The further you look back, the more you see.

As early as 2006 or the beginning of 2007 Ken first became aware of his memory lapses.  These lapses weren’t confusions or mix-ups; they were literally missing pieces of short-term data.  His doctor at the time in Lexington, Massachusetts, referred him to a neurologist at Boston’s Brigham Hospital who administered a battery of memory tests.  Ken made short work of lists of numbers but didn’t do as well with lists of objects.  There were other tests, too, that indicated the tell tale signs of memory loss.  I saw this as aged-related memory loss, not the kind of confusion that comes with Alzheimer’s. 

In June that year Ken volunteered for a study looking for the causes of Alzheimer’s disease and testing a potential curative drug.  (It wasn’t.)  He was to take the experimental drug (or placebo) for several months and the results, or lack thereof, were to be measured.  One month into the study his gastrointestinal reaction to this drug (no placebo, for sure) was so severe he was almost hospitalized, and I persuaded him to get out of the study.  (It’s worth noting, since he was diagnosed with colon cancer in 2013, that the study doctors did a colonoscopy during his recovery to determine whether the drug had damaged his gastrointestinal system. The results were negative. The colon was clean.)  Measurements made while he was in the study showed that his brain has the same kind of plaques associated with Alzheimer’s and other types of dementia.   But Ken had his wits about him, even though he forgot things.  He read scientific journals, discussed issues, and still had a powerful wit.  It wasn’t Alzheimer’s.  But it was memory loss all the same.  His hearing loss was what began to isolate him in social settings. 

It was around this time that he began losing his ability to distinguish different actors’ faces on the television. An actor who appeared in one scene and was dressed differently in another he might think was someone different.  I remember the moment when he first asked me who was who.  

When you look back, there are usually signs that point in a certain direction, except when they don’t:  Putting objects in ‘safe’ places where they will later be hard to find; losing track of objects like keys (who hasn’t done this!), tickets (hard to find because, as with many guys, he has too many pockets to put them in!), becoming more “absent-minded” (isn’t the “absent-minded professor” just a personality type?) forgetting to pack needed items like shirts for a trip (haven’t we all done that sat least once?).  It's a question of frequency.  

He never learned our phone number when we moved to Vermont in 2011.  Or remembered our zip code.  Or mastered his smart phone.

Our friends from Kentucky on Buck Mountain in July, 2016

September 2014

Cambodia and Vietnam would probably be our last major trip, I figured.  Ken had been through chemo and surgery for colon cancer by this time.  We had been to London in May for a short visit, and his stamina was notably down.  (He also got lost in the British Museum.  This was posted on nonewsfromhere.blogspot.com, “Lost in the British Museum.”)  I was wary about the Southeast Asia trip, but I thought if it could be made comfortable enough for him, it would work.  And it did.  We walked a lot, even kayaked, traveled in every mode of transport––motor rickshaws, pedal rickshaws, wagons, buses, boats––and had fun.  His participation in conversation had lessened (hearing? understanding?) but he was in touch.  He forgot things:  he lost his binoculars in one place and his iPad in another.  At gate for our flight in Tokyo he said he “wanted to stretch his legs for a bit” (uh-oh!) and before I knew it he was off.  I was pinned in place with our luggage.  Nerve-wracking minutes went by.  Boarding was announced.  I asked that he be paged, then remembered it wouldn’t do any good because he wouldn’t be able to hear the page.  At nearly the very last moment he reappeared as if by magic.  It was almost funny.  Next time, I thought to myself, he’s not taking off alone, ever.  No, this time I said it out loud.

This year's crop of swallows at fledging time.  There were four in all.

December 2015 and June 2016

Which is worse, what happens in the body or in the mind? 

Southeast Asia wasn’t our last trip after all.  We managed to get to the Galapagos in December, spend a weekend in New York, and go to Spain in May.   But they were near things.  Each trip had at least a small worry or distraction: a sudden weakness in the Whitney Museum, fainting in Seville  (“The Rain in Spain” post on nonewsfromhere.blogspot.com), incontinence in the Galapagos.  It wasn’t until we were home in June that things fell apart. 

Ken may have been more uncomfortable physically than he let on before June.  But it was clear by that month that he needed more pain medication for the colon cancer.  About which there is little to be done.  Radiation is long over and can’t be repeated a third time.  Surgery did not stop the cancer.  Chemotherapy did not stop the cancer.  Drastic therapies are out of the question.  So the cancer has free rein.  The trick is providing the right amounts of medication for comfort.  A nurse from hospice visits regularly.  That is the physical part. 

What is harder to experience and see is the mental part.  The confusion.  Memory has been slipping away slowly for such a long time that to see it suddenly slipping faster is almost disorienting.  It was a long time ago when actors in different clothing or scenes first appeared to Ken to be different people.  Now the story line is often incomprehensible.  Ken still takes up the science journals, but will forget what he has read shortly after reading.  He will probably not be able to discuss what he has read.  Worst of all are the waves––and they are exactly that, waves that well up and then recede––of a mixture of confusion, anxiety, and despair all together.  Why are we here?  How did we get here?  What’s happening?  He calls all this “feeling spacey.”  I don’t really know what that means, but it’s not a terrific feeling. 

There are also good, kind of "normal," days.

We went for a short hike recently.  He took it slow.  Afterwards he was weary, yet happy to have done it.  He was in good spirits.  Towards the very end I had noticed he was walking crooked, slanting to the left.  This was the first time I’d seen him canted like this since our trek in Patagonia.  Once again there was nothing physically wrong.  “It feels good to walk this way.”

He never wanted to be like this.