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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.

Tuesday, April 29, 2014

A Spirituality of Weakness & Vulnerability

Washington DC
I recently visited the Michigan State medical school to lecture about the “Spirituality of Weakness and Vulnerability.”  I’ve lectured many times to medical students, but this was a new topic for me and I was quite anxious: It’s not easy to write about human vulnerability; we don’t have good language for it.  Because of the long train/bus trip, I came in a day early to be able to rest.  I also needed to tweak the lecture I’d prepared.

First panic: I discovered that my talk was on the wrong subject … at least different from what I had told the organizer.  This was actually the second time I’d forgotten the subject matter.  The general topic was “Spirituality and Medicine.” I’d been asked last summer when both the organizer and I believed I had Alzheimer’s, so I was going to talk about that.  In January, after I’d discovered I didn’t have Alzheimer’s but only a stable cognitive decline, we decided I would talk about my history of working as a physician in economically oppressed areas and its impact on my spiritual life.

I wrote back with a proposed outline of my talk.  He responded that he didn’t see any reference to spirituality in the text.  Sure enough, I’d completely forgotten the general spirituality theme.  So we settled on the “Spirituality of Doing,” ie the deepening of my spirituality that had come from my work as a physician in Washington DC.  When it came time to write the lecture, however, I forgot what I’d told him and prepared the lecture on vulnerability. 

Second panic: Re-reading the lecture, I realized it was terrible: Simplistic, full of platitudes, and boring with no new, interesting perspective.  It was a ghost of what I thought I’d written.  I hadn’t articulated what I knew in my spirit: integrating my human brokenness into my spirituality was essential to being a good doctor.  So I tried to fix it.   

Third panic: About 6 PM I realized I wasn’t improving the lecture, which comprised four stories describing different sides of weakness and spirituality.  But I couldn’t tie them together … especially the story about my “Alzheimer’s,” which—while still about weakness—had not been painful like the others.

Fourth panic: I choked.  My anticipation of the next day’s embarrassment and disappointment overwhelmed me emotionally.  I could hardly think straight.  I wasn’t going to be able to do this.

I took a long walk and returned to the hotel, hoping to continue writing.  Still nothing!  In desperation I called Marja.  She’d read the draft before I had left DC and said, without much enthusiasm, that it was ok.  I wasn’t terribly hopeful she was going to be able to help now. 

Story, story, story! she reminded me.  It’s the stories that people remember, not all the philosophy/psychology explaining it.  From my previous writing, I knew this to be true, but in this case I just didn’t trust my naked stories.  Marja recommended letting the stories speak for themselves, hosever, without trying to talk about them too much.

I felt a glimmer of hope and went back to writing.  It took me until 4 AM to get it done.  I got up at eight to make sure my middle-of-the-night thinking was still coherent, made some small changes and was picked up a little later.  The organizer wasn’t really upset about the subject change … what could he do, after all?

I was still more anxious than I'd ever been before giving a lecture, but the approximately 100 students and faculty paid close attention …even though it was after lunch.  I can always tell when my audience is with me.  They asked lots of good questions, and the organizer and his group were very appreciative.  It was a wonderful experience for me.  (You can read the lecture here.)

Sharing stories of my brokenness gave people in the audience permission to look at that broken part of themselves, to recognize their dark sides, to acknowledge that they aren’t always the strong, confident people they show the world.  Recognizing our weak and vulnerable sides can bring us closer to our true selves and to our core values. 

Only later did I understand that the whole process—forgetting the agreed-upon lecture subjects, not recognizing the unsatisfying lecture until almost too late, all the panics, and, in the end, acknowledging my dependence on Marja—was itself an experience of my weakness and vulnerability. 

There’s a brief sentence in the New Testament: “Be ye perfect as your Father is perfect.”  The word translated into English as “perfect,” however, doesn’t mean doing everything right; it means being whole, living out of one’s complete self, expressing one’s deepest values.  And in each one of us being whole includes being aware of and acknowledging our weakness and vulnerability.

Tuesday, April 22, 2014

Bus Schedules

Washington DC
Between a viral infection that has knocked me about the last several weeks and preparing for a lecture at the Michigan State University medical school, I haven’t been able to blog.  Fortunately, I did feel better enough for a few days last week to take the train/bus combo to Michigan and fulfill my responsibility to give the lecture, but even on the way back I started to feel weak and sleepy again.  It’s gotten a little better, but it’s time to see a doctor other than the one looking out at me from the mirror.

I’ve wondered two or three times whether the fogginess and weakness that has accompanied the other flu symptoms is a result of some further damage to my brain.  I doubt it, but I can’t help thinking about it.  The most likely cause of my cognitive decline is vascular (those little strokes), so—although it’s unlikely—any sudden change in my mental status could signal a sudden worsening of my cognitive decline.

Even without the current fogginess, the impairment seems to be worsening slightly over the past several months.  Last week I was trying to make a set of bus reservations.  Megabus can certainly make travel inexpensive, but you can only make reservations online.  They also make you figure out your own connections if you have to change buses.  I was trying to make reservations to travel from here in Washington to New York City then transfer to a bus to Albany NY and make the return trip a week later.  I had to:
a) figure out my desired arrival time in Albany,
b) figure out the needed departure time from New York to Albany, and
c) then go back and figure out the Washington departure time to get to New York on time for the Albany bus.  
d) Then I needed to reverse the process a week later.
It sounds a little complicated when I write it out like that, but this kind of task has never been difficult for me.

I just couldn’t do it.  I would get the day of the week confused, the arrival and departure time in NYC confused, forget when I wanted to leave or when I wanted to get there.  Several times I had all four reservations about to finalize but then I double-checked and one of them had the wrong time or even the wrong date.  Then even those that were right started to look like they were wrong, and I had to go through the entire process in my head to double-check it.  I should have written it all out on paper, I suppose, but I got so frustrated that it didn’t even occur to me.  After forty-five minutes, I finally got the trip from Washington to New York right and the trip from Albany back to NYC right, but I couldn’t get the other two.  I finally had to ask Marja for help.

Before my cognitive impairment, it would have been humiliating to tell Marja I couldn’t do it, but at least that is no longer true.  We both know what the trouble is, so she was happy to finish the task.

Having to hold several related things in my mind while working on each separately is the most frequent manifestation of my cognitive decline these days.  Something similar happened trying to compare two almost identical copies of my speech; there’s a not-very-complicated automatic procedure for that exact thing in Microsoft Word, but it took me the longest time to get the correct documents in the right order and then—as I went through the combined document—I kept getting confused about which option from which document was the one I needed.

It frustrates me:

  • I can’t tell whether my confusion is really getting worse or it just seems so. 
  • Almost every time I try to describe something like the ticket episode above, the other person will say, “Well, I’d get confused, too.”  I just nod my head.
  • And then I remember my intention to let these kind of useless comparisons go.  I’m not scared of the future, so why let myself get worked up about minor changes?

In September 2012, when I first received the diagnosis of “almost certain” Alzheimer’s, I would have been extraordinarily grateful to know that in April 2014 I’d be worried about such minor problems as these. 

I could just remain grateful and take each day as it’s given.

Tuesday, April 08, 2014

Depression and Alzheimer’s

Washington DC

A reader left a comment on a recent post pointing out that depression is also a relatively common cause of cognitive impairment.  Because of childhood trauma, he’d also experienced anxiety and PTSD, and I suspect they belong on the list of potential causes, too.  People sometimes ask me if depression makes a person more susceptible to Alzheimer’s.

The question is important.  There is certainly an association between the two, but the cause runs the other way: Alzheimer’s (or any other cognitive impairment) can cause people to be depressed, but there is no evidence that depression causes Alzheimer’s or even makes it more likely. 

So depression must be on the list of the causes of mild cognitive impairment.  If medical evaluation has ruled out the most obvious of the others, then depression moves higher in the list of possibilities.  If a person is seriously depressed, one can see how the depression might affect her ability to think well.  

Usually depression is obvious, but not always.  There is (or, at least, was) a stigma around the disease and people don’t want to acknowledge their inner pain.  They need to cover it up and mask it with a smile.  Even family members may not know how much the person suffers. 

In some cases the people themselves don’t even know they’re depressed.  I’m an example.  I now know that I was depressed for the first half of my adult life, but at the time I didn’t recognize it for what it was.  I didn’t have the usual symptoms: sleeping too much, being dysfunctional at work, thinking of suicide, and so on.  But I was almost always dissatisfied with my life, feeling I should be doing better, hyper-aware of my mistakes despite having what might have appeared to be a perfect life as a successful small-town doctor.  I was mostly miserable.  I thought my misery was caused by the difficulties of medical practice or my unreasonable expectations of life.  The possibility of depression never entered my mind.  It was more than a decade later, after I’d begun adequate anti-depressant medication and was beginning to experience how a non-depressed life felt, that I recognized I had depression. 

So, when faced with a person who has dementia of no discernible cause, a doctor must keep the possibility of depression in mind, even if the patient vigorously denies being depressed.  Having her doctor repeatedly return to the question of depression, however, can be frustrating for a patient who is convinced that she is not unusually depressed.  It can raise doubts about her own perceptions of her emotional state, especially if she does have minor bouts of mild depression.  It may also seem as if the doctor is trying to dismiss the seriousness of her complaints by pushing them off onto emotional causes. It’s a frustrating experience for both patient and doctor that can endanger mutual trust.

Mild cognitive impairment of no obvious cause is difficult enough an experience.  The confusion around depression can make it worse.