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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.

Monday, July 28, 2014

Where have you been?

Washington DC
I realize I haven’t written anything for almost three weeks.  One kind soul even emailed me inquiring after my health.  It’s true that I was out of Internet range for a week and I’ve been struggling with a smashed collarbone** for the last ten days that has made typing difficult.  But the reality is that I haven’t had much to say.

I’m fine.  Physically the pain from the collarbone injury doesn’t bother much except at night.  I continue to struggle with the mild cognitive decline that impairs my memory and makes certain intellectual tasks more difficult.  But I’ve gotten used to the limitations; there doesn’t seem to be much (if any) progression; and my life is otherwise so much better than before my decline that I don’t think about it much anymore.

I appreciate the little community that has sprung up around this site, and I want to stay in touch.  I’ll continue to write if I have anything to say.  I will, however, be out of town for the next month with limited Internet access.   If I am inspired, I’ll find some way to publish the results here on the blog while I’m away.  Otherwise, I’ll be back in September.


** For those of you who drive in cities and use on-street parking, I beg you to look for bicyclists before you open the door on the driver’s side.  If you open your door without looking, a bicyclist has no chance.  A week ago Saturday I was riding in a bike lane on a side street.  Without warning (I suspect I was checking my rearview mirror for traffic), I crashed into an open door and the edge of the door hit me in the middle of my collarbone.  I wear a helmet of course, but if I’d been five inches closer to the car, it would have smashed my face in.  Since “being doored” (as it’s known in the trade) also spills the rider out into the traffic lane, the consequences would have been much worse if there had been any traffic.  I’ve ridden in the city for years and intend to continue to do so (for convenience, health, financial and ecological reasons).  So please watch out for me and my brothers and sisters as you’re getting out of your car.

Wednesday, July 09, 2014

Racism in My Community?

Washington DC
This past Sunday morning I offered a teaching in our small Eighth Day Faith Community.  We’re a lay-led church and take turns preaching or teaching.  I spoke about racism.  It’s not that racism, in the usual sense, runs rampant through the church; quite the opposite.  Most of us have worked for many years, in non-profits that have served impoverished African Americans within Washington’s inner city, and many of those non-profits were founded by members of our community.  But, like all white institutions in the United States, racism permeates our structures while our unconscious prejudices make change difficult.

During the past year or two, a number of us from the community have participated in anti-racism training and have become quite sensitized to the nature of American racism, both personally and in our institutions, including Eighth Day.  About ten percent of our fifty-member worshipping community is African American, but our leadership is completely white (and over fifty) and our style of worship is largely white … except for the singing, which has changed dramatically in the past several years, in part as a response to our increased exposure to African American worship and in part because it’s just so much more lively and fun.

As we have struggled with the issue of racism, there have been conflicts within the community that have become heated and, in my opinion, have been creating some potentially serious divisions.  On the other hand, I believe that many of those divisions are less real than they appear and are mostly due to different understandings of the meaning of some words we use.  It’s not that there aren’t important disagreements among us, but we’ve allowed those disagreements to divide us rather than to help us understand one another and learn from each other.  So my intent in teaching was to try to heal some of the division by sharing my perceptions.

I bring all of this up here in this blog because my role in our community has subtly changed over the past two years, in large part due to my original diagnosis of Alzheimer’s and the lingering cognitive decline.  I now feel much more emotionally and spiritually bonded to the community.  I take real joy in my relationships with others, which was often not the case in my past.  As I wrote several weeks ago, I’ve become more comfortable with myself and more accepting of my gifts.  I’ve been able to “lead from behind,” which is far more comfortable for me than the painful anxiety I experience with the usual kinds of more direct leadership.

One implication is that the nature my leadership in our community has changed.  In becoming more joyful and less intense, I listen more.  In developing strong relationships with people, I know more profoundly what is happening in the community.  Through our anti-racism training and our small “mission group” that has been exploring racism and trying to educate our various communities, I’ve developed special relationships of real trust with the African Americans in our faith community and others I now connect with.  All of this allows me to speak with some authority to both “sides” of the issues and to be trusted by most to seek the common good rather than speak from one perspective or the other.**

I’m sure my role in our community is not only the result of my cognitive decline but also of the many years of my presence and leadership, but, paradoxically, my cognitive decline has strengthened my emotional intelligence and interpersonal connections.  Once again I find myself more grateful to my cognitive changes than disappointed by them.

* Racism re-defined as (often) unconscious, undesired prejudices plus institutional power may not a familiar concept to most people.  I’ve explained it much more fully in my teaching.
** After the service two different people said I was probably the only person in the community who could have given the teaching.  Be that as it may, it does indicate something of my role in our little fellowship.

Thursday, July 03, 2014

Memento

Washington DC
Over ten years ago my son took me to see the movie Memento, which he’d seen several times already and was sure I would enjoy.  It was an intentionally disjointed story that I couldn’t follow completely, so, while it was interesting, I’m not sure I enjoyed it.  One theme of the film, however, was an exploration of memory.** At the beginning of the movie, we see Leonard, the story’s protagonist, killing Teddy, whom he believes murdered his wife.  Leonard, however, has anterograde amnesia, meaning that he can remember nothing except the last few minutes of his past.  He’s compensated for his impairment by keeping a record of his past in notes, photos, and tattoos.  The movie proceeds with the scenes leading up to the killing in reverse order, which puts us, the viewer, in the same mental place as Leonard: As we watch each scene, we, too, know nothing of the past.
 
I turns out that Leonard has completely misunderstood the implications of his notes, photos, and tattoos.  Later in the movie, we learn that the person he eventually kills is actually innocent of the murder.  At the end of the movie, we find out that Leonard’s diabetic wife was not even murdered but died of an accidental insulin overdose.

Memory is the foundation of rational action, of course.  But it’s more.  As we follow Leonard backward in his life, we get some sense of the utter confusion, the disorientation and, in this case, the horror of being able to remember only the most recent past. 

My loss of memory is, of course, in nowhere near the same category as Leonard’s.  Nevertheless, I get glimpses of what it’s like to be him.  For instance:
  • I don’t know this person standing in front of me is; but should I?
  • Have I already told this story to my son-in-law during his two-day visit or was it someone else I told?
  • As I talk, is my line of reasoning based on a fact I’m sure of or on a speculation I’ve seen on the Internet?
At our leadership team meeting after church this week, I had only the foggiest idea of what had happened in the previous meeting.  The other three people had each brought a paper they’d clearly read in advance, so I must have received it, too.  Had I just forgotten to read it and bring it; or did I somehow not obtain it; or had I thrown it away altogether?  Although the others have mostly gotten used to my impairment, I was still embarrassed that I’m not creating more memory aids to make sure things like this don’t happen.  What bothers me most is this low-level disorientation.  Am I throwing things away that I should keep or just forgetting them?  Why don’t I get around to creating the memory aids?  How many of my questions are things I should already know?  Should I even participate in the discussion?

I’m not really confused, just sometimes a little lost.  I’m sure lots of other people experience some of this same disorientation.  Nevertheless, my questions to myself can sometimes make me wonder just who I’ve been.  It’s just unnerving enough to give me images of what it might be like when memory really slips away.

** Fair disclosure: I don’t remember all of the following details; I looked them up in Wikipedia.