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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Sunday, August 31, 2014


Written: Wednesday, August 27
Amtrak, somewhere in Iowa

Where am I?  What’s throwing me around so roughly?  Which way is up? 

It’s pitch black.  Noise as if the world is ending surrounds me.  I’m completely disoriented.  What’s happening?  More than my worst nightmare, primal terror fills my consciousness.  Where am I?

Oh, yes.  Laurel’s house, sleeping with Marja on the pull-out futon in their den.  Of course … an earthquake.  We need to get under a door frame.  I try to stand up.  What’s this stuff on the floor blocking my path?  I have to crawl toward the door over whatever it is on the floor.  My terror begins to subside but the adrenaline rush keeps me shaking.  Marja has woken: “Where are we?”  She sounds less terrified that irritated by the interruption to her sleep.  I reach the door; the light switch doesn’t work.   I move out into the hallway and finally my son-in-law’s flashlight pierces the darkness.

My daughter Laurel and her family live in Napa, about 6 miles from the epicenter of Monday’s 6.0 earthquake, the most powerful in northern California since 1989.  It struck at 3:20 am.  I had fallen asleep only an hour earlier, and the shuddering earth woke me abruptly from deep sleep.  No wonder I was so disoriented.  I can still find no words to describe the terror.

The house suffered no structural damage.  The worst was the mess: fallen pictures, toppled shelves, computer monitors, all thrown to the floor.  Glass shards lay everywhere: from wine glasses on shelves (this is the Napa Valley, after all), from Mason jars stored above the cabinets, and from the glass protecting pictures.  In our room, which Laurel normally uses for her small Internet business, two computer screens and all sorts of supplies spilled across the room.  Near the door had been five fairly heavy wooden boxes stacked loosely one on top of the other, unattached to a wall.  The crashing and banging that had awakened me was the whole stack’s toppling and spilling its contents over the room.  Fortunately, our bed wasn’t in its path.

Given the power of the earthquake, the Napa area also got off relatively lightly.   Three people were critically injured but none killed, gas and water lines broke causing some fires, some buildings were damaged as were some roads.  More immediately for us, no trains would be moving until railroad inspectors approved the tracks, bridges and tunnels within a hundred-mile radius.  We rescheduled our trip home for the next day.

My thoughts keep returning to that initial minute of terror.  The terror had no object, nothing I could identify as dangerous.  It was just a moment of sheer chaos, disruption, and unknowing unlike any I’d ever known.  For the past several days, I’ve searched for words to describe the feeling but have found nothing remotely up to the task.

I wonder if some people, upon learning their diagnosis Alzheimer’s or other dementia, experience a similar terror, a nameless dread.  Perhaps long after the diagnosis, some still wake in the middle of the night to that visceral panic even beyond the rational fear of the disease.  Words of comfort cannot sooth the terror, much less dispel it. 

It’s painful for the rest of us to remain physically and emotionally present to the terror of another.  We, too, are afraid of the helplessness and may pull away, unable to bear it when our ministrations are ineffective or, worse, rebuffed.  At such moments we can only share in the agony of the one we love ... and remain present. 

Wednesday, August 20, 2014

A Treacherous Landscape

The Oregon Coast

Last week while Marja, our son Kai and our grandson Otto were exploring the Oregon coast, we walked out to see the towering plumes of water created by the crashing surf at high tide.  To get there we had to walk perhaps 50 meters over volcanic rock.  The rock was uneven, of course, and we had to hop around the shallow pools of water from one island of rock to another.  It should certainly not have been a problem; nobody else seemed to be having trouble moving around.
I’m used to my mild difficulties with balance caused by my peripheral neuropathy.  Now, unable to use my left arm (which was in a sling from my broken collarbone), my balance was even worse. All of this was exacerbated by the sandals I’d chosen to wear rather than the hiking boots I should have worn.  The cumulative impact on my sense of balance made it extraordinarily difficult to navigate around the small pools of water, and I almost fell several times onto the sharp surface of the rock.  My flailing left arm and misstep into one of the small pools to maintain my balance made me feel foolish … and old!
However, I noticed something else.  The landscape itself began to seem treacherous.  I was aware that everyone else was navigating easily, but I noticed myself wondering: In such a dangerous place, how do they do it? 
To a much smaller degree, I have noticed a similar phenomenon as a result of my cognitive decline.  Certain aspects of the environment seem perilous in themselves.  I find myself checking out immediately from of any disagreement about what happened in the past, even when I’m quite sure of my memory.  I defer to others’ sense of direction or decisions about how to find our way to wherever we’re going.  I want to avoid Scrabble after noting the decline in my ability to play.
These are not disabling.  Most of the time my sense of direction is perfectly serviceable.  I only lose my way in new environments (like driving to the Napa Library this morning with Otto and his sister Madeline) and even then it’s only temporary.  I still make some stab at arguing with Marja about memory.  I’m definitely going to play Scrabble with Otto and Madeline again.  Nevertheless, these situations create a certain apprehension.
I suspect that people with significant impairments experience similar (although much worse) anxiety.  As their abilities wane, it’s not just a question of avoiding those particular situations.  It’s also that the entire environment becomes more and more frightening and fear itself exacerbates their impairment … and their isolation.
There’s a tendency, I suspect, for the caregiver to get a bit frustrated when the person with Alzheimer’s refuses to do something that the caregiver knows that he really could do.  Perhaps we underestimate the fear that makes their forays into the environment seem impossibly treacherous.

Friday, August 15, 2014

Why Windfarms Kill Absent-Minded Geese

(Written: Wednesday, August 6, 2014)
West on Amtrak
Ok.  So Marja and I are traveling by train across the plains of North Dakota on our way from DC to Seattle to go hiking and to see our West Coast children.  We see a large wind farm, the blades revolving so slowly that Marja wonders out-loud why they sometimes kill migrating birds.  I think, well, the ends of the blades are probably moving more quickly than they seem.  How fast, I wonder?

There being nothing better to do after staring out the window at corn and grass and sky for a couple of hours, I decide to figure it out.  (For those of you who don’t care how fast they’re going or don’t follow math easily, you might skip to the last four paragraphs.) 

I google the size of a wind-turbine blade: 116 feet long (Holy smokes! I thought maybe 40 feet long).  I time one revolution of the blades: six seconds. 

(Five years ago I could have gone from here and figured the speed of the tips in my head, but I can’t come close now, so I take a scrap piece of paper and write each step down.) 

I’m happy that I remember from my basic geometry that the circumference of a circle is πr (pi [3.14] times the radius), so I calculate that the distance the tip travels in one revolution is 364 feet.  Now I need to translate the feet into miles.  I dig out from my memory that one mile is 5280 feet; so the number of miles traveled in one revolution is 364 divided by 5280 (364/5280).  Since there are 60 seconds to a minute and 60 minutes to an hour, there are 3600 seconds in every hour.  So the time of one revolution per hour is 6 divided by 3600 (6/3600).  Therefore, the speed in miles per hour is the result of 364/5280 (the distance expressed in miles) divided by the result of 6/3600 (the time expressed as a fraction of an hour). 

Now I realize that this may sound complicated when you read it.  If you write out the numbers and if you know basic geometry and algebra, however, it’s really pretty straightforward. 

(It would have been a whole lot simpler, of course, if I’d done the long division of each of the separate fractions into their decimal equivalents before proceeding, but in my confusion I didn’t see that until I’m writing this blog post  and checking it over several times.)

The answer as a complex fraction is 364/5280 divided by 6/3600.  This should not be difficult for a high-school valedictorian, Yale-graduate physician, whose best subject was math.  But I can’t do it, even on paper.  The source of my problem is a usual one for me: it’s a multistep process. I should translate the feet traveled into miles traveled; translate the time of one revolution per second to the time per hour; make them into a complex fraction; and do the arithmetic.  But by the time I finish with the first step and begin the second, I’m already confused about where I am in the process.  I keep flipping each of the fractions, multiplying and dividing and getting thoroughly confused.  My scrap paper is covered with the four numbers (364, 5280, 6 and 3600) in various combinations plus others I can’t remember the source of.

So I finally remember to calculate the decimal equivalents by dividing the fraction in the numerator (364/5280) into its decimal equivalent, but I get confused even doing that.  (Divide the numerator by the denominator, right? Or is it the other way around?  How do I do the long division of 364 divided by 5280?  C’mon, David; long division is elementary school arithmetic!)  I figure out one of the decimals and now I can’t remember where I am in the process, which of the fractions on the paper means what?  My brain feels parboiled.

Finally, I have either to give up or “cheat” using the calculator on my phone.  I calculate the 364/5280 into a decimal (0.069 of a mile) and write it down on a fresh piece of paper.  Then I calculate the 6/3600 into its decimal form (0.00166) hour and write that down.  Finally, I divide the nominator decimal by the denominator decimal and get 43 mph. 

I then decide that you might be interested in reading the whole debacle.  But as I write the fifth paragraph above about my calculations, I notice that in my first step I used the wrong formula: The circumference is supposed to be pi times the diameter and not pi times the radius.  Does that make my result twice as large or half as large?  I have to work that out on paper, too.  And now I can’t remember what my initial result was nor can I find it in the jungle of numbers on the papers, so I recalculate the whole thing on my calculator, getting confused again along the way.  I make so many mistakes that it takes me perhaps twenty minutes just to repeat the simple process.  And checking all the calculations again takes me another half an hour, and I’m still not sure I’m right.  So far, I’ve gotten three different answers, but the final one seems right.

To those of you who wisely jumped here after the third paragraph or tried and didn’t make it through the preceding paragraphs, I don’t mean to imply that anyone should be able to figure this out easily.  The point is that I used to be able to get an approximate answer to something like this in less than a minute in my head; With pencil and paper I could get the exact answer in two or three minutes.  And now it takes me well over an hour and the use of a calculator to work out an answer I’m only shakily confident in.

If ever I need clear demonstration of my decline, something like this is it.  I have no idea why my decline doesn’t show up on cognitive testing, but the reality is obvious.

For about a minute I notice myself getting depressed about it, but that lifts pretty quickly.  I already know that I’m cognitively impaired.  Do I really care how fast the tips of the propellers are moving?  No, I don’t.  (It’s 83 miles an hour if you’re interested, probably fast enough to clobber a goose who’s blindly following the goose in front of him while daydreaming about his mate and not paying enough attention to the blades.)  Perhaps I used to care about impressing and amazing my friends by figuring out the approximate answer in less than a minute, but I’m actually happier now not being so hooked on the need to be superior.

Values change.  I enjoy most of my new values better than the ones they’ve replaced.  I’ll put up with the occasional confusion.

Monday, August 04, 2014


Washington DC

A close friend, blogger and author Carol Marsh recently wrote of her fear of a treatment that might alleviate the worst of the migraine headaches that have disabled her for years.  She was scheduled to undergo the new treatment the following day and was noticing her anxiety and fear about the procedure:
  • the possibility that she might have negative reactions to the medication,
  • the pain of the procedure itself,
  • her disappointment if the treatment didn’t work.
But she also noted another cause of her anxiety:
  • the fear that the treatment might work and relieve much of her pain.
  • If she were no longer disabled, could she, at 60, get a job after her disability check was cut off?
  • Others admire her for getting a university degree in Creative Writing while suffering almost constant pain.  If she were no longer disabled, what would there be to admire?
  • She feels sometimes that her whole life has revolved around coping with her pain.  What was she going to do as an able person?
  • Silly as it may sound, she even fears not getting enough sleep if she can’t take to her bed anytime she feels tired.
If she’s no longer disabled, who is she?

She well understands that her fears of  getting well might seem ridiculous to most people.  Nevertheless, they are real.

Those of you who have followed this blog for a while know that I’ve experienced similar difficult feelings while gradually learning that I didn’t have Alzheimer’s.  I’ve written about it in previous posts (for instance, here) but never quite so clearly and succinctly as Carol has.
  • As a “professional Alzheimer’s patient” with a popular blog and invitations to speak, I had a satisfying vocation that contributed to the well-being of others.  I didn’t want to give it up.
  • I had learned to let go of difficult tasks without feeling selfish.
  • My life-long anxiety about not doing enough lost its power over me.
  • I felt gratitude for my life, for my friends, for my community that I’d never felt before.
  • With that gratitude and with the security in my vocation, I’d become a nicer person.
How much of that would I lose?

I was relieved and grateful of course that I no longer had Alzheimer’s.  But my disappointment seemed often to outweigh my gratitude.  I felt like a fraud who had duped interviewers, audiences and suffering people for my fame.  I was no longer the person I had thought I was.  Who was I?

We depend on our identities—including the painful ones—to order our lives, even to give them meaning.  For the first half of my adult life, for instance, I suffered from untreated depression.  I thought of myself as a “depressed person.”  Then new medication dispelled virtually all my depression.  I was ecstatic without any sort of disappointment, not even a sliver … or so I thought. 

Nevertheless, even after twenty years, I’ve never quite given up being a “depressed person.”  There were little benefits:
  • I had a ready excuse to decline social invitations I wouldn’t have wanted anyway. 
  • I could finally admit that I was unhappy as a doctor and give myself permission to leave the profession. 
  • The reality of my depressions had become an important part of the lectures I gave. 
In ways I didn’t recognize then, I actually missed my depression. 

Identity is a huge part of us.  Even the painful threads of our identity haven been woven into the fabric of ourselves.  Regardless of the pain a part of our identity has previously brought, we can understand and forgive ourselves for that little sliver of disappointment when we’re forced to shape a new one.