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. 

  

THE RAIN IN SPAIN

RAIN IN SPAIN

The entrance door to 16 Calle Aguilas.
The sidewalk is a foot and a half wide.

From the roof of my friend Bonnie’s palacio (actually, she has an apartment within a palacio) on the Calle Aguilas we could look over all of central Seville (Sevilla).  The sky was heavy with clouds.  It hadn’t rained since we arrived that midday, but the odds for taking along umbrellas when we walked in the city later seemed pretty high. Rain was to play around with us for much of the week. 

 Heavy clouds over Seville, from the roof of 16 Calle Aguilas.

Beautiful spaces like this palacio–marble columns and floors, a fountain in the atrium and plenty of ornamental grillwork–are sights usually only glimpsed when someone happens to emerge through a tiny one-person-at-a-time door (think pet door for humans) onto a foot and a half of sidewalk.  The small door is part of an immense twenty-foot or so double door, big enough to have once admitted vast companies of one thing or another.  On the roofs of these places there can be surprises, like a spiral staircase to the uppermost roof garden and perhaps a swimming pool as we saw at Bonnie’s.

Looking in from the entrance

The living room of Bonnie's apartment

One of the streets in the labyrinth that is old Seville

On what I think was our first (rainy) day we visited the Infanta Louisa, a private hospital.  Not sightseeing, alas, but to get some meds for an incipient urinary tract infection Ken was developing.  A TV monitor in the filled small waiting area showed the numbers waiting patients were assigned.  The loudspeaker called out numbers, and finally ours–ciento cincuenta y nueve!––a reception that brought to mind my last visit to the motor vehicle bureau.  We met with a young Cuban doctor who spoke a bit of English (although Bonnie was our translator), picked up a prescription, paid with a credit card and left.

In a day or two Ken was feeling better.

Easter week processions were mostly over, but for the procession of this particular group.
The "float" is moved by men underneath the cloth who carry it on the back of their necks. Small rectangular
openings in the front allow them to see (barely) where they are going.  The float is heavy.

On another rainy day shortly thereafter–a no kidding around rain this time–it seemed a good day to visit a particularly beautiful medieval convent, the convent of Santa Paula inhabited by cloistered Jerónimas nuns (followers of St. Jerome).  It dates from 1475, the current facade from 1503.  Like many other such ancient buildings in Sevilla, it combines several styles:   Mudéjar (Andalusian muslim), Gothic and Renaissance, the chapel altarpiece a baroque creation of 1730.  It is chock full of art:  paintings, decorative and sacred objects, and–oddly, to me–a goodly number of dioramas created by nuns in the 17th and 18th centuries.  These must have taken ages to build, but obviously time was something they had in abundance.

Behind bars: the interior courtyard of Santa Paula

Inside one of the rooms in Santa Paula

John the Baptist head (sculpture or ceramic?)

One of the nuns' 18th century dioramas.  This was the largest.

Detail from the above diorama

Earlier we had stopped in at another cloistered convent a few doors down the Calle Aguilas where the nuns sell sweets that they make themselves to raise money.  It seems such an odd transaction in the present day, finding pastries on shelves behind an old iron grill, pulling a chain to summon help, and then seeing a small friendly person in full habit emerge to take the cookies you select, collect the cash, and retreat out of sight.  Many convents like this one have fallen on hard times with fewer young women–certainly fewer of those with means–wanting to become nuns, much less cloistered nuns.  I was stuck by the short stature of every nun we came across compared with women in the general public.  It was my guess that they had once been members of very poor rural families and perhaps undernourished as children.

Selling sweets in a cloistered convent

DOING THE MACARENA

Ken, one-time altar boy, lapsed Catholic, self-declared atheist, doesn’t react well to heavy religiosity.  Every time I pointed out some little scene in one of the convent dioramas he murmured something like “uh” and gave only a cursory look.  Then he leaned a against a table and said “I need to sit down.”   There was a bench near the entrance, about the only thing I saw that someone could sit on.  Surrounded by several visitors on their way out and the nun who was showing us around, Ken passed out cold.

Ken contemplating an altarpiece moments before he collapsed

A man who appeared from nowhere felt for his pulse.  He gave us a concerned look.  The nun was in tears.  An ambulance was called.  A long minute passed.  It was frightening.  Then Ken came around.  The ambulance arrived.  First rule of Spanish emergency care:  only one person in the ambulance.  Better, we agreed, to have someone with Ken who spoke Spanish, so Bonnie went along and I followed later in a taxi.  The nun said she would pray for us. 

The nun in charge of showing guests around.  She is talking with Bonnie
minutes before Ken collapsed

Ken, Bonnie, and I reunited in the huge emergency waiting area of the Macarena hospital.  As a hospital connected with the Seville medical school, it seemed like a sound choice. I found Ken lying on a gurney, and feeling relatively chipper.  He had not yet been seen by anyone.  We quickly realized that here, instead of the nurse/doctor/aide/whomever visiting the patient, the patient on the gurney visits the room of the nurse/doctor/aide/whomever.  In other words, you sit in the waiting room next to your patient’s gurney.  The patient’s name is announced on the public address system along with the room number you need to visit.  You meet with someone in one room, return to the waiting area, then wait for the patient’s name to be called again and move to another room.  These announcements were constant.  Signs on the wall urged silence and tranquility–no yapping on cell phones–but given the constant announcements and orderlies rushing around and occasionally yelling, it was anything but tranquil.  The atmosphere felt so much like an airport lounge I half expected to hear flight announcements.  We waited.  

Ken at the Macarena, on his gurney, looking pretty good

We wheeled Ken into room 9 (a tiny office space with desk, a couple of chairs and barely room for the gurney) where we were asked a few questions, some irrelevant, by two people, one of whom was a doctor, although we weren’t sure which one. We described how he had fainted.  There was a half-hearted question about medications that I only half answered.  We mentioned he had colorectal cancer. No questions concerned his overall health, and so far no one had taken his temperature or checked his vital signs, usually the first order of business.  Back to the waiting room, gurney in tow.  I don’t remember how many consulting rooms we visited, but I know we went into room 9 twice.  Then, finally, some sort of decision had apparently been made by someone (no idea who) that Ken be admitted for observation, as he was moved to observation room 2.  Hours had gone by.

The door to room 2 was impenetrable.  No window.  The door was posted “Authorized Personnel Only.”  Time went by.  We stood outside room 2.   We waited.  And waited.  What were they doing in there?  Is there something dangerous going on that you have to be authorized?  There was no place to sit.  No doctor came to talk with us.  Who was the doctor anyway?   Ken probably had no idea where we were either.

Did I mention that the day we left for Spain Ken couldn’t find his wallet?  We had done a frantic house and pants pockets search but came up empty.*  Ultimately we left without his wallet.  Here in the Macarena he might as well have been a homeless person, a man without a country:  no identification, no home address, no money, no credit cards,  no hearing to speak of and no Spanish.  Plus a faulty memory.   I had to let Ken know I was nearby.  i decided to do the forbidden, and opened the door.  (“No one allowed…”)  Ken was there, resting on his gurney, and two orderlies (doctors? nurses?) were sitting next to him, chatting.  Other than that, nothing whatever was happening.   We learned they were simply waiting for word to move Ken to another bed.  We told Ken we had to leave but that we would be back that night.

Ken’s faulty memory is probably the reason the doctor we saw when we arrived that night for visiting hours (I should say visiting minutes, 15 precisely that we almost missed entirely as we were late) thought Ken had hit his head “because he had amnesia.”  Amnesia?  Bonnie suggested the doctor read the damn chart.  The head injury theory might explain why they did a brain scan on top of the EKG, the blood test, the urine test, the x-ray and whatever else.  (Please, I thought, let this cost less than $5,000!)

The next morning Bonnie and I prepared for our 1 o’clock visiting minutes.  Then at 11 o’clock we got a phone call:  “Come immediately, the doctor needs to talk to you!” 

Oh my God.

No problem!  You see, the doctor is only available to speak to patients’ families at 11!  There was no emergency. The doctor, a personage we hadn’t seen before, wanted only to explain to us the test results. Nothing of significance seemed to have been unearthed.  (He didn’t mention Ken’s underlying cancer. Maybe he didn’t know about it?)  In fact, Ken was to be released.  The doctor gave us copies of all the test results and we were free to go. He handed me three low-dose aspirin with solemn instructions to have Ken take these at mealtimes.  (I still wondered:  why did he faint? Had I missed something?)  We ushered Ken into a wheelchair and pushed him to a spot near the front door while Bonnie went off into the nether reaches of the hospital to locate the bill.

After some time Bonnie reappeared with a hospital financial person in tow.  The good news:  the bill was an amazingly low $450.  The bad news: it had to paid right away, in cash.  In my wallet I had only 200 euros.  The financial person, who spoke no English, was to accompany me to the bank across the boulevard so that I could withdraw cash and pay the hospital so that we could take Ken home.  (Reminds you of a scam, doesn't it?)  It was, once again, pouring some serious rain.  Huddling under umbrellas, we crossed the boulevard and walked to the bank, Bonnie coming along to translate.  At the bank ATM my credit card was immediately declined.  (What could happen in a week?  Why should I have bothered to notify the credit card company I was going to Spain?)  We tried it at the bank next door, me and the finance lady.  Declined.  The atmosphere was getting tense.  I was convinced she thought I intended to defraud the hospital.  Or possibly she was thinking she would lose her job if she didn’t get the hospital’s money.  Out into the rain again and back to bank number one.  (I’m thinking about Ken, without identification or ability to communicate in Spanish, waiting alone across the street, abandoned…)  I thought, well, I’ll use my bank debit card.  No problem.  Call me peculiar, but it happens I remember my debit PIN in two ways:  my finger placement on the keypad and by 4 letters (not numbers).  All the keypads I use are arranged 1, 2, 3, first row, 4, 5, 6, second row, etc.  Not this one.  The first row was 1, 4, 7, the second 2 ,5, 8.  My fingers froze.  I could not remember, figure out, or type the password.  In fact I couldn’t even think.  One more try and the ATM would lock up my card.  (I’ve got to do this because I have to ransom Ken, waiting all alone back there in the Macarena!)  At the critical moment I didn’t have the sense to look to look at the keypad of my iPhone that would have revealed the letters that go with the numbers of my PIN.  The keypad locked up.  The financial lady's patience was at a complete end, and she finally concluded (as Bonnie translated) that we could take Ken home as long as I swore to wire the money as soon as we got home.**  I swore. 

We rescued Ken from the Macarena entrance, taxied back to Bonnie’s palacio, had some wine, and went to a flamenco show that night, all three of us. 

Flamenco dresses and other traditional dress are sold everywhere. Seville has strong
cultural traditions.  Families get together for days of dancing, horse riding, and feasting.

With one of Bonnie's friends in the Plaza Alfalfa, after the Maracarena

No more convents for Ken!

AFTER THE RAIN

The weather in Seville the week we were there–intermittent sunshine and rain showers with occasional downpours–mirrored our own experiences.  Awful times, crazy times, usually accompanied by rain, were thankfully more or less equaled by good times and sunshine, at least when it mattered. 

One of the many really neat bars on our street

Another nice little nearby bar

They compost in Seville!

While Ken was in the hospital Bonnie and I hung out in the Bar Alfalfa (on Calle Aguilas, where just about everything was located) for wifi. ("Weefee" in Seville.)  We visited the Palacio Pilatos on the same street but in the opposite direction.  This Palacio is also a mixture of Mudéjar and Renaissance architecture, dating primarily from the 16th century.  It’s forms are graceful, its gardens lovely.  I went there a second time later on with Ken.  It was a preview on a smaller scale of the magnificent Alcázar that I was able to see one sunny morning.

The interior facade of the Palacio Pilatos

The upper floor is furnished for family members of the original nobility if/when they visit

Gardens of the Palacio Pilatos

A World Heritage Site, the Alcázar is said to be the most beautiful palace in Spain and one of the most outstanding examples of mudéjar architecture.   It’s located at one of the loveliest plazas in Seville, near the enormous cathedral and the Archive of the Indies, the home of the documents of the earliest Spanish conquistadors and explorers.

The Archives, the cathedral, the Alcázar are all on this fabulous plaza

A small part of the enormous cathedral

Inside the Archive of the Indies

The Arab Almohad Caliphate that originated in Morocco expanded to southern Spain in 1172 and it was around this time that the Alcázar was begun.  Rulers over the centuries added, built over, and rebuilt many sections of the palace throughout the Middle Ages, the Renaissance, right up to the 19th  century.   It is impressively preserved.  The harmony of architecture and gardens is exquisite.   It was the splendor of these extensive gardens that I especially wanted to see.  

They were built not just to supply food for the residents of the palace (there are orange trees heavy with fruit) but clearly for aesthetic reasons.  Water is everywhere in the form of little channels, jets, ponds and pools.  It’s hard to capture the beauty in mere words.  You need to hear the sounds of water, smell the scents of the flowers, hear the peacocks, and feel the sun.  It is a sensory experience. 

The baths at the Alcazar; a cool rainwater channel just below the garden level

NOT THE ALCAZAR:  A modern sweeping thing (known locally as the mushroom) in the old city.

LESSONS LEARNED

How to make Tinto Verrano (summer wine):  Take half a cup of red wine and mix with half a cup of lemon or lime soda, pour over ice, and toss in a half lemon slice. Very popular.

Tapas are terrific.  Make a meal of tapa, wine and dessert and at current prices it might set you back $10, maybe more, maybe less.  Go big and it could be $25.

Remember your damn PINs.

*Later found.  In a pants pocket we hadn’t checked.

**After I came to my senses about the password, Bonnie wisely suggested we deposit the money for the bill in a branch of the same bank the hospital uses, only this bank was right down the street.  And that, after an hour of further Kafkaesque hassles––"the bank can only deposit the money if you are a member of the Spanish health system; but we need to deposit the money because we are not members of the Spanish health system, etc., etc"––is what we did.