tag:blogger.com,1999:blog-64262020965980510702024-03-13T19:52:30.364-04:00Watching the Lights Go OutDavid Hilfiker: A Memoir of an Uncertain Mind David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.comBlogger200125tag:blogger.com,1999:blog-6426202096598051070.post-25275309603428820732016-02-04T13:46:00.000-05:002016-02-04T13:49:34.931-05:00I'm Grateful<!--[if gte mso 9]><xml>
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I <a href="http://davidhilfiker.blogspot.com/2014/10/the-last-post.html">stopped
writing</a> this blog in October 2014 because I'd discovered that I did not, in
fact, have Alzheimer’s disease and because the decline in my cognitive
abilities had stabilized. <span style="mso-spacerun: yes;"> </span>Several weeks
ago, however, a reader emailed me to “urge [me] to do a 'follow up' post to let
us all know how things are after this passage of time.<span style="mso-spacerun: yes;">" </span>It seems like a good idea.<br />
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I'm very grateful to be able to say that the gradual
loss of my cognitive status that precipitated this blog three years ago has
leveled out. <span style="mso-spacerun: yes;"> </span>Further medical tests indicated
I did not have Alzheimer's disease.<span style="mso-spacerun: yes;"> </span>Cognitively
I've been stable now for almost two years and over the past six months certain
abilities have actually improved: I'm able to concentrate a bit more, and I don't
get confused as much as I did.<span style="mso-spacerun: yes;"> </span>I still have
significant deficits in memory, in word-finding, in organizing my thoughts, in
multi-step cognitive processing, and in certain kinds of computation.<span style="mso-spacerun: yes;"> </span>Aside from my memory decline and my
difficulty word-finding, however, most people don't recognize anything wrong or
they think that it's just a result of aging.<span style="mso-spacerun: yes;">
</span>I believe it has to be more than aging, but whether it is or not is no
longer important to me.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I'm not much embarrassed when I forget someone's name or
even that we just met last week.<span style="mso-spacerun: yes;"> </span>Most
everyone I see day-to-day knows about the loss, so I don't have to explain
much.<span style="mso-spacerun: yes;"> </span>Generally, when I meet someone
new, I'll tell them in advance that I'm <i style="mso-bidi-font-style: normal;">terrible</i>
with names and faces and I'll probably forget who they are the next time.<span style="mso-spacerun: yes;"> </span>Usually, I don't have to go into detail.</div>
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<br /></div>
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One aspect of the decline that does bother me is that
complicated discussions are almost impossible now. I can't remember enough to
follow the ideas.<span style="mso-spacerun: yes;"> </span>My college-professor
son-in-law, for instance, loves to get into abstract discussions about almost
anything, and I just can't keep up anymore.<span style="mso-spacerun: yes;">
</span>We spent Christmas in Philadelphia with my daughter and her family.<span style="mso-spacerun: yes;"> </span>I'd recently read the book <i style="mso-bidi-font-style: normal;">Capital</i> (by Thomas Pinketty) and was
excited about it, for it helped me to understand some of the important issues
we're facing in our capitalist economic system.<span style="mso-spacerun: yes;">
</span>My son-in-law hadn't read it, but he'd read some reviews.<span style="mso-spacerun: yes;"> </span>When I started to tell him about the book, I could
convey only my emotional excitement, not the particulars of what had excited me.<span style="mso-spacerun: yes;"> </span>As college professors are wont to do, I
suppose, he immediately critiqued the ideas in the book, and I found myself
almost helpless, frustrated, and irritated.<span style="mso-spacerun: yes;">
</span>(I love my son-in-law and don't want anything to stand between us, so I suppose
I need to talk with him about it … or maybe he'll read this post.)</div>
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<br /></div>
<div class="NormalParagraph">
On the other hand, my intellectual functioning has
improved enough that I've dared to go back to teaching some less complicated
subjects.<span style="mso-spacerun: yes;"> </span>Because of my remaining
confusion, I've decided to require my students to bear more responsibility for
the class (making me more of a coordinator).<span style="mso-spacerun: yes;">
</span>This is probably better teaching than my previous lecturing, anyway, so
I'm enjoying the teaching more than before.</div>
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<br /></div>
<div class="SpaceBefore">
What is much more important to me, though, is that many of
the gifts I received from my time with Alzheimer's (<a href="http://davidhilfiker.blogspot.com/2013/02/grace-and-joy.html">here</a>
and many other posts in the blog, which you can find by entering the word
"joy" into the site's search engine) have, to some degree, remained
with me, and my life is more joyous because of it.<span style="mso-spacerun: yes;"> </span>I'm less uptight about getting things done
and am fairly (although not completely) comfortable taking on fewer
responsibilities.<span style="mso-spacerun: yes;"> </span>I'm easier to get
along with (people tell me), and I have more friends.<span style="mso-spacerun: yes;"> </span>I can rely on others, where before I would
have insisted on being more independent.<span style="mso-spacerun: yes;">
</span>None of this is perfect, of course; there's plenty of backsliding, but I
am so much happier than before.<span style="mso-spacerun: yes;"> </span>It's a
great gift.</div>
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<br /></div>
<div class="SpaceBefore">
Perhaps the biggest difference from several years ago is
that I've been given back a future that I thought had been taken away. <span style="mso-spacerun: yes;"> </span>I had been counting on only a few years of
full intellectual life remaining.<span style="mso-spacerun: yes;"> </span>(That
was a certain kind of gift, too; I could let responsibility for long-term
projects slide without guilt.)<span style="mso-spacerun: yes;"> </span>But now my
future offers the possibility of more.<span style="mso-spacerun: yes;"> </span>I
am able to take some of those responsibilities back.<span style="mso-spacerun: yes;"> </span>Despite my history of depression and a
certain irritating realism, I have always been an optimist at heart. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>So I'm
eager to see how it all works out.<span style="mso-spacerun: yes;"> </span>Even
considering the broken state of our politics, even considering the state of
racism and global climate change, I still look forward to experiencing this
strange future that is coming.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
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So … I'm grateful.<span style="mso-spacerun: yes;">
</span>I can't ask for more.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com14tag:blogger.com,1999:blog-6426202096598051070.post-91263225400645254332014-10-19T15:05:00.000-04:002014-10-19T16:20:01.749-04:00The Last Post … (?)<div class="NormalParagraph" style="text-align: right;">
Washington DC </div>
<div class="NormalParagraph">
Some of you will have noticed that I haven’t written
in almost a month; you may be wondering what’s happened to me.<span style="mso-spacerun: yes;"> </span>I’m fine, but I just haven’t had anything new
to say.<span style="mso-spacerun: yes;"> </span>My cognitive lights are no
longer winking out.<span style="mso-spacerun: yes;"> </span>True, some are still
burned out and unlikely to return, but it seems I’ve written everything I’ve
had to say about them.<span style="mso-spacerun: yes;"> </span>So it’s time to
end this chapter in my life and close “Watching the Lights Go Out.”</div>
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<br /></div>
<div class="NormalParagraph">
This journey since my initial diagnosis of Alzheimer’s
two years ago has been a wild and amazing ride.<span style="mso-spacerun: yes;">
</span>As I’ve written before, I have been and still am grateful for this
ongoing experience; I’ve become a better and more joyful person.<span style="mso-spacerun: yes;"> </span>Writing here has given me the opportunity to
share the journey with others, thereby clarifying my own experience.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
<div class="NormalParagraph">
More important, however, has been the joy I’ve felt in
the growth of this community created by you who have been reading it.<span style="mso-spacerun: yes;"> </span>Many of you have used the comments section of
the blog.<span style="mso-spacerun: yes;"> </span>At least as many others have
written me privately <a href="http://www.davidhilfiker.com/index.php?option=com_contact&view=contact&id=1&Itemid=30">through
my website</a>.<span style="mso-spacerun: yes;"> </span>And I suspect there are
others who, for many different reasons haven’t written but still feel part of
this community.<span style="mso-spacerun: yes;"> </span>All of you have given me
many gifts for which I am, and will remain, deeply grateful for each one of
you. </div>
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<br /></div>
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This<i style="mso-bidi-font-style: normal;"> </i>blog
has been explicitly about my own personal experience with cognitive decline,
“watching the lights go out.” <span style="mso-spacerun: yes;"> </span>It’s been
that first-person, intimate story that has captured people’s interest and
sometimes even their hearts.<span style="mso-spacerun: yes;"> </span>It’s
important to me that I maintain the integrity of that purpose.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
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I’m going, therefore, to close the blog.<span style="mso-spacerun: yes;"> </span>I will be writing, however, about the process
of aging in much the same personal style.<span style="mso-spacerun: yes;">
I'm not yet sure where I'll write it. </span>Perhaps I will create a new blog for that … or another topic.<span style="mso-spacerun: yes;"> </span>Perhaps, after a time to make a clear break
with the past, I will re-open this one.<span style="mso-spacerun: yes;"> I will post something here about where you will be able to find it. </span>But
for now I’m done.</div>
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<br /></div>
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I am deeply grateful.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com24tag:blogger.com,1999:blog-6426202096598051070.post-84520742495686878042014-09-20T16:21:00.001-04:002014-09-20T16:24:25.611-04:00A Gift of Community<div class="CenterParagraph" style="text-align: right;">
Washington DC </div>
<div class="NormalParagraph">
When I <a href="http://davidhilfiker.blogspot.com/2012/09/yesterday-cliche-goes-was-beginning-of.html">first
thought I had Alzheimer’s</a>, I was given the gift of community.<span style="mso-spacerun: yes;"> </span>I’d been part of my small church for over a
decade, but I’d never been aware of the love that its members held for me.<span style="mso-spacerun: yes;"> </span>I knew that they admired me for what I’d done
and could do; I knew they respected me for my integrity; but I had not been
aware of their love for me.<span style="mso-spacerun: yes;"> </span>This wasn’t,
I now perceive, because they didn’t love me earlier but because I couldn’t take
their love in, or even recognize it.</div>
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<br /></div>
<div class="NormalParagraph">
What had previously frightened me most about
Alzheimer’s had been the anticipation of the <a href="http://davidhilfiker.blogspot.com/2013/04/my-fears.html">isolation</a>
that so often descends as friends, relatives, and even family turn away.<span style="mso-spacerun: yes;"> </span>Alzheimer’s is often seen as embarrassing, frightening,
leaving other people uncertain how to respond.<span style="mso-spacerun: yes;">
</span>Many, even most, just gradually drop away, or so readers of this blog have
written me.<span style="mso-spacerun: yes;"> </span>Isolation <span style="mso-spacerun: yes;"> </span>was really the only fear I had … especially late
one night when my wife <a href="http://davidhilfiker.blogspot.com/2012/11/fantasies-of-future.html">Marja
didn’t come home</a> at the time I expected her, and I began to have fantasies
of living the rest of my life without her..<span style="mso-spacerun: yes;">
</span></div>
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<br /></div>
<div class="NormalParagraph">
When, shortly after my diagnosis, I <a href="http://davidhilfiker.blogspot.com/2012/11/sharing-with-my-church.html">announced</a>
it to the church, I could feel that fear of isolation begin melting.<span style="mso-spacerun: yes;"> </span>Immediately a circle of prayer formed around
me.<span style="mso-spacerun: yes;"> </span>I must admit to not believing that
prayer changes things supernaturally, but those prayers certainly changed my
relationship to my community.<span style="mso-spacerun: yes;"> </span>I <i style="mso-bidi-font-style: normal;">felt</i> their love and concern.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
My relationships with many people from the community
changed profoundly (or at least my perceptions of them did).<span style="mso-spacerun: yes;"> </span>Friends came up to me and assured me that
they wanted to stay in relationship, to care for me when I needed caring for.<span style="mso-spacerun: yes;"> </span>(I knew, of course, that not everyone would
be able to keep that commitment; Alzheimer’s is too frightening.<span style="mso-spacerun: yes;"> </span>Yet I knew that some would.<span style="mso-spacerun: yes;"> </span>And I knew that all of them sincerely wanted
to.)</div>
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<br /></div>
<div class="NormalParagraph">
Throughout the next year, my sense of the community’s
love for me only deepened.<span style="mso-spacerun: yes;"> </span>When I
couldn’t remember names or made <a href="http://davidhilfiker.blogspot.com/2012/12/a-huge-mistake.html">serious
mistakes</a>, people not only forgave me but worked with me and had compassion (without
pity) for me.</div>
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<br /></div>
<div class="NormalParagraph">
Most of the love and compassion that the community
felt for me had been present, I’m sure, all along.<span style="mso-spacerun: yes;"> </span>But I was too independent and closed off to
sense it, to let it in, until I found myself so vulnerable.<span style="mso-spacerun: yes;"> </span>At that point I needed it so much that I
opened up.<span style="mso-spacerun: yes;"> </span>My vulnerability, I suspect,
melted that protective shell around me, and allowed the love in.<span style="mso-spacerun: yes;"> </span>Similarly my vulnerability gave the community
opportunities to do some things for me, which brought us closer.<span style="mso-spacerun: yes;"> </span>(If you really want to demonstrate your love for
a friend, ask him or her to do something for you that you really need?.)<span style="mso-spacerun: yes;"> </span>My vulnerability gave them appropriate opportunities
to express their love.</div>
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<br /></div>
<div class="NormalParagraph">
What has been amazing to me is how that change has
persisted.<span style="mso-spacerun: yes;"> </span>When I discovered a year
later that I <a href="http://davidhilfiker.blogspot.com/2014/01/letting-go-again.html">did not,
in fact, have Alzheimer’s</a>, our deeper relationships endured.<span style="mso-spacerun: yes;"> </span>They were still offering me love and
acceptance, and I was still able to open myself to it.</div>
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<br /></div>
<div class="NormalParagraph">
It seems to me nothing short of miracle.<span style="mso-spacerun: yes;"> </span>Suddenly at age 67, the self-protection that
I had held onto all of my life melted away almost overnight, and I was able to
allow in a kind of joy that I’d never experienced.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
The gift has stayed with me.<span style="mso-spacerun: yes;"> </span>I’m very grateful.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com5tag:blogger.com,1999:blog-6426202096598051070.post-88151342347116464612014-09-07T16:17:00.000-04:002014-09-07T16:19:39.503-04:00Sudoku<div class="FlushParagraph" style="tab-stops: right 454.5pt;">
<div style="text-align: right;">
Amtrak,
Iowa</div>
<b>Written: August 27,
2014</b></div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
<br />
Marja and I are on the
train home from visiting our children and grandchildren on the West Coast.<span style="mso-spacerun: yes;"> </span>While in Napa playing with my grandchildren, I
got addicted to the puzzle game Sudoku, downloaded it to my computer and have playing
it on the train-ride home</div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
<br /></div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
Without going into the
intricacies of Sudoku, I need to copy an 81-cell grid that’s on my computer
screen righin front of me onto a piece of paper also in front of me.<span style="mso-spacerun: yes;"> </span>The grid is divided up into nine squares of 9
cells each, and I need to mark with an X the cells I’ve completed and leave the
others blank.<span style="mso-spacerun: yes;"> </span>It’s a simple task: copy a
design that is right in front of me.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
<br /></div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
I just can’t do it; not
even close; I become repeatedly confused.<span style="mso-spacerun: yes;">
</span>I’ve posted about other experiences of getting confused; for example, <a href="http://davidhilfiker.blogspot.com/2014/08/why-windfarms-kill-absent-minded-geese.html">here</a>,
<a href="http://davidhilfiker.blogspot.com/2014/03/better.html">here</a>, and <a href="http://davidhilfiker.blogspot.com/2013/12/what-happened-to-laundry.html">here</a>,
although in those situations I was confused about much more complicated
matters.<span style="mso-spacerun: yes;"> </span>But this is straightforward
copying, and I can’t do it.</div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
<br /></div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
Immediately
afterwards, I was editing an essay I’m writing and I got confused again, too confused
to continue.<span style="mso-spacerun: yes;"> </span>Then I tried reading a
simple novel and got mixed up there, too.</div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
<br /></div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
<span style="mso-spacerun: yes;"> </span>Have I suddenly gotten worse?<span style="mso-spacerun: yes;"> </span>What can have caused it?<span style="mso-spacerun: yes;"> </span>If the cause of my cognitive decline is
vascular (little strokes), have I just had another shower of the tiny clots?<span style="mso-spacerun: yes;"> </span>It seems that my life has turned again.</div>
<div class="NormalParagraph" style="tab-stops: right 463.5pt;">
</div>
<div class="FlushParagraph" style="margin-top: 12.0pt;">
<b>Written: Sunday, September 7,
2014</b></div>
<br />
<div class="NormalParagraph">
Several hours after the episode above, however, I came
back to my reading and then to editing, and I was able to do both without
difficulty.<span style="mso-spacerun: yes;"> </span>Just yesterday, a week after
the events above, I had no difficulty in copying a similar pattern from a
Sudoku game. </div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
So it was a temporary event.<span style="mso-spacerun: yes;"> </span>It could have been something akin to a transient
ischemic attack (TIA), but I doubt it.<span style="mso-spacerun: yes;"> </span>I
suspect it was something much simpler.<span style="mso-spacerun: yes;"> </span>I
don’t sleep well on the train (to say the least) and was extremely tired.<span style="mso-spacerun: yes;"> </span>I was also wired on caffeine, which I
ordinarily don’t drink much.<span style="mso-spacerun: yes;"> </span>I’m
beginning to think that the physical stress I was under from the tiredness and from
the caffeine significantly exacerbated my cognitive decline.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Come to think of it, my <a href="http://davidhilfiker.blogspot.com/2014/08/why-windfarms-kill-absent-minded-geese.html">trouble
calculating the speed</a> of the tips of the wind generators occurred on the
train out West, when I’d also been short of sleep (and probably wired on
caffeine, too).</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Hard as it may be to believe, I’ve never thought of
this possibility.<span style="mso-spacerun: yes;"> </span>Could other
exacerbations of my underlying cognitive decline have been similarly affected
by physical distress?</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
If physical stress is a major contributor to my
episodes of worsening confusion, then I need to think seriously about
decreasing that stress.<span style="mso-spacerun: yes;"> </span>It’s the lack of
sleep that is the most likely culprit.<span style="mso-spacerun: yes;">
</span>I’ve never slept well and can say that I’ve been chronically tired a
great deal of my life (except during certain vacations).<span style="mso-spacerun: yes;"> </span>Part of it is anxiety, part of it is my
history of depression, but much of it, I suspect, is that I just enjoy the late
night so much and can’t discipline myself to go to bed.<span style="mso-spacerun: yes;"> </span>This kind of change could be very
problematic. </div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
In certain ways I’ve taken good care of my body
throughout my life: lots of exercise, reasonably good diet, normal weight, and
so on.<span style="mso-spacerun: yes;"> </span>I have not, however, ever given
much thought to my chronic tiredness.<span style="mso-spacerun: yes;">
</span>It’s time to re-examine things.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com7tag:blogger.com,1999:blog-6426202096598051070.post-1439517195076772502014-08-31T15:42:00.000-04:002014-08-31T15:42:43.572-04:00Terror<div class="HeadingParagraph" style="tab-stops: right 463.5pt;">
Written: Wednesday, August 27</div>
<div class="HeadingParagraph" style="text-align: right;">
<span style="font-weight: normal;">Amtrak, somewhere in Iowa</span></div>
<div class="HeadingParagraph" style="tab-stops: right 463.5pt;">
<br /></div>
<div class="NormalParagraph">
Where am I?<span style="mso-spacerun: yes;"> </span>What’s
throwing me around so roughly?<span style="mso-spacerun: yes;"> </span>Which way
is up?<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
It’s pitch black.<span style="mso-spacerun: yes;">
</span>Noise as if the world is ending surrounds me.<span style="mso-spacerun: yes;"> </span>I’m completely disoriented.<span style="mso-spacerun: yes;"> </span>What’s happening?<span style="mso-spacerun: yes;"> </span>More than my worst nightmare, primal terror
fills my consciousness.<span style="mso-spacerun: yes;"> </span>Where am I?</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Oh, yes.<span style="mso-spacerun: yes;">
</span>Laurel’s house, sleeping with Marja on the pull-out futon in their den. <span style="mso-spacerun: yes;"> </span>Of course … an earthquake.<span style="mso-spacerun: yes;"> </span>We need to get under a door frame.<span style="mso-spacerun: yes;"> </span>I try to stand up.<span style="mso-spacerun: yes;"> </span>What’s this stuff on the floor blocking my
path?<span style="mso-spacerun: yes;"> </span>I have to crawl toward the door over
whatever it is on the floor.<span style="mso-spacerun: yes;"> </span>My terror begins
to subside but the adrenaline rush keeps me shaking.<span style="mso-spacerun: yes;"> </span>Marja has woken: “Where are we?”<span style="mso-spacerun: yes;"> </span>She sounds less terrified that irritated by
the interruption to her sleep.<span style="mso-spacerun: yes;"> </span>I reach
the door; the light switch doesn’t work.<span style="mso-spacerun: yes;">
</span>I move out into the hallway and finally my son-in-law’s flashlight
pierces the darkness. </div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>It struck at 3:20
am.<span style="mso-spacerun: yes;"> </span>I had fallen asleep only an hour
earlier, and the shuddering earth woke me abruptly from deep sleep.<span style="mso-spacerun: yes;"> </span>No wonder I was so disoriented.<span style="mso-spacerun: yes;"> </span>I can still find no words to describe the
terror.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
The house suffered no structural damage.<span style="mso-spacerun: yes;"> </span>The worst was the mess: fallen pictures,
toppled shelves, computer monitors, all thrown to the floor.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>In our room, which Laurel normally uses for
her small Internet business, two computer screens and all sorts of supplies
spilled across the room.<span style="mso-spacerun: yes;"> </span>Near the door had
been five fairly heavy wooden boxes stacked loosely one on top of the other,
unattached to a wall.<span style="mso-spacerun: yes;"> </span>The crashing and
banging that had awakened me was the whole stack’s toppling and spilling its
contents over the room.<span style="mso-spacerun: yes;"> </span>Fortunately, our
bed wasn’t in its path.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Given the power of the earthquake, the Napa area also
got off relatively lightly.<span style="mso-spacerun: yes;"> </span>Three
people were critically injured but none killed, gas and water lines broke
causing some fires, some buildings were damaged as were some roads.<span style="mso-spacerun: yes;"> </span>More immediately for us, no trains would be moving
until railroad inspectors approved the tracks, bridges and tunnels within a
hundred-mile radius. <span style="mso-spacerun: yes;"> </span>We rescheduled our
trip home for the next day. </div>
<div class="NormalParagraph">
<br /></div>
<div class="SpaceBefore">
My thoughts keep returning to that initial minute of
terror.<span style="mso-spacerun: yes;"> </span>The terror had no object,
nothing I could identify as dangerous.<span style="mso-spacerun: yes;">
</span>It was just a moment of sheer chaos, disruption, and unknowing unlike
any I’d ever known.<span style="mso-spacerun: yes;"> </span>For the past several
days, I’ve searched for words to describe the feeling but have found nothing remotely
up to the task.</div>
<div class="SpaceBefore">
<br /></div>
<div class="SpaceBefore">
<br /></div>
<div class="SpaceBefore">
I wonder if some people, upon learning their diagnosis Alzheimer’s
or other dementia, experience a similar terror, a nameless dread.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Words of comfort cannot
sooth the terror, much less dispel it.<span style="mso-spacerun: yes;"> </span></div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph">
It’s painful for the rest of us to remain physically
and emotionally present to the terror of another.<span style="mso-spacerun: yes;"> </span>We, too, are afraid of the helplessness and
may pull away, unable to bear it when our ministrations are ineffective or,
worse, rebuffed.<span style="mso-spacerun: yes;"> </span>At such moments we can
only share in the agony of the one we love ... and remain present.<span style="mso-spacerun: yes;"> </span> </div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com3tag:blogger.com,1999:blog-6426202096598051070.post-33575937705604210452014-08-20T15:16:00.004-04:002014-08-20T15:22:10.089-04:00A Treacherous Landscape<div style="text-align: right;">
<span style="mso-tab-count: 1;"></span>The
Oregon Coast
</div>
<br />
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>To get there we had to walk perhaps 50 meters
over volcanic rock.<span style="mso-spacerun: yes;"> </span>The rock was uneven,
of course, and we had to hop around the shallow pools of water from one island
of rock to another.<span style="mso-spacerun: yes;"> </span>It should certainly
not have been a problem; nobody else seemed to be having trouble moving around.</div>
<div class="NormalParagraph" style="margin-top: 12.0pt;">
I’m used to my mild
difficulties with balance caused by <a href="http://davidhilfiker.blogspot.com/2014/05/elderly-at-69.html">my
peripheral neuropathy</a>.<span style="mso-spacerun: yes;"> </span>Now, unable to
use my left arm (which was in a sling from my <a href="http://davidhilfiker.blogspot.com/2014/07/where-have-you-been.html">broken
collarbone</a>), 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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>My flailing left arm and misstep into one of
the small pools to maintain my balance made me feel foolish … and old!</div>
<div class="NormalParagraph" style="margin-top: 12.0pt;">
However, I noticed something
else.<span style="mso-spacerun: yes;"> </span>The landscape itself began to seem
treacherous.<span style="mso-spacerun: yes;"> </span>I was aware that everyone
else was navigating easily, but I noticed myself wondering: In such a dangerous
place, how do they do it?<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph" style="margin-top: 12.0pt;">
To a much smaller degree, I
have noticed a similar phenomenon as a result of my cognitive decline.<span style="mso-spacerun: yes;"> </span>Certain aspects of the environment seem
perilous in themselves.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>I defer to others’ sense of direction or decisions about how to find our
way to wherever we’re going.<span style="mso-spacerun: yes;"> </span>I want to
avoid Scrabble after noting the decline in my ability to play.</div>
<div class="NormalParagraph" style="margin-top: 12.0pt;">
These are not
disabling.<span style="mso-spacerun: yes;"> </span>Most of the time my sense of
direction is perfectly serviceable.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I still make some stab at arguing with Marja
about memory.<span style="mso-spacerun: yes;"> </span>I’m definitely going to
play Scrabble with Otto and Madeline again.<span style="mso-spacerun: yes;">
</span>Nevertheless, these situations create a certain apprehension.</div>
<div class="NormalParagraph" style="margin-top: 12.0pt;">
I suspect that people with
significant impairments experience similar (although much worse) anxiety.<span style="mso-spacerun: yes;"> </span>As their abilities wane, it’s not just a
question of avoiding those particular situations.<span style="mso-spacerun: yes;"> </span>It’s also that the entire environment becomes
more and more frightening and fear itself exacerbates their impairment … and their
isolation.</div>
<div class="NormalParagraph" style="margin-top: 12.0pt;">
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.<span style="mso-spacerun: yes;"> </span>Perhaps we underestimate the fear
that makes their forays into the environment seem impossibly treacherous.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com17tag:blogger.com,1999:blog-6426202096598051070.post-29267621020893332562014-08-15T17:19:00.000-04:002014-08-20T15:23:21.773-04:00Why Windfarms Kill Absent-Minded Geese<div class="TitleParagraph" style="tab-stops: right 459.0pt;">
</div>
<div class="FlushParagraph">
(Written: Wednesday, August 6,
2014)</div>
<div class="FlushParagraph" style="text-align: right;">
<span style="mso-tab-count: 1;"></span>West on Amtrak</div>
<div class="FlushParagraph" style="tab-stops: right 459.0pt;">
</div>
<div class="NormalParagraph">
Ok.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>We see a large wind farm, the blades
revolving so slowly that Marja wonders out-loud why they sometimes kill
migrating birds.<span style="mso-spacerun: yes;"> </span>I think, well, the ends
of the blades are probably moving more quickly than they seem.<span style="mso-spacerun: yes;"> </span>How fast, I wonder? </div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>(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.)<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I google the size of a wind-turbine blade: 116 feet
long (Holy smokes! I thought maybe 40 feet long). <span style="mso-spacerun: yes;"> </span>I time one revolution of the blades: six
seconds.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
(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.)<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I’m happy that I remember from my basic geometry that
the circumference of a circle is <span style="font-size: 16.0pt;">πr</span> (pi [3.14]
times the radius), so I calculate that the distance the tip travels in one
revolution is 364 feet. <span style="mso-spacerun: yes;"> </span>Now I need to
translate the feet into miles.<span style="mso-spacerun: yes;"> </span>I dig out
from my memory that one mile is 5280 feet; so the number of <i style="mso-bidi-font-style: normal;">miles</i> traveled in one revolution is 364
divided by 5280 (364/5280).<span style="mso-spacerun: yes;"> </span>Since there
are 60 seconds to a minute and 60 minutes to an hour, there are 3600 seconds in
every hour.<span style="mso-spacerun: yes;"> </span>So the time of one
revolution per hour is 6 divided by 3600 (6/3600).<span style="mso-spacerun: yes;"> </span>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).<span style="mso-spacerun: yes;">
</span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Now I realize that this may sound complicated when you
read it.<span style="mso-spacerun: yes;"> </span>If you write out the numbers
and if you know basic geometry and algebra, however, it’s really pretty straightforward.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
(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 <span style="mso-spacerun: yes;"> </span>and checking it
over several times.)</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
The answer as a complex fraction is 364/5280 divided
by 6/3600.<span style="mso-spacerun: yes;"> </span>This should not be difficult
for a high-school valedictorian, Yale-graduate physician, whose best subject
was math.<span style="mso-spacerun: yes;"> </span>But I can’t do it, even on
paper.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I keep flipping each of the fractions,
multiplying and dividing and getting thoroughly confused.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>(<i style="mso-bidi-font-style: normal;">Divide
the numerator by the denominator, right? Or is it the other way around?<span style="mso-spacerun: yes;"> </span>How do I do the long division of 364 divided
by 5280?<span style="mso-spacerun: yes;"> </span>C’mon, David; long division is
elementary school arithmetic!</i>) <span style="mso-spacerun: yes;"> </span>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? <span style="mso-spacerun: yes;"> </span>My brain feels parboiled.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Finally, I have either to give up or “cheat” using the
calculator on my phone.<span style="mso-spacerun: yes;"> </span>I calculate the 364/5280
into a decimal (0.069 of a mile) and write it down on a fresh piece of paper.<span style="mso-spacerun: yes;"> </span>Then I calculate the 6/3600 into its decimal
form (0.00166) hour and write that down.<span style="mso-spacerun: yes;">
</span>Finally, I divide the nominator decimal by the denominator decimal and
get 43 mph.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I then decide that you might be interested in reading the
whole debacle.<span style="mso-spacerun: yes;"> </span>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 <b style="mso-bidi-font-weight: normal;">diameter </b>and not pi times the <b style="mso-bidi-font-weight: normal;">radius</b>.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">Does
that make my result twice as large or half as large?</i><span style="mso-spacerun: yes;"> </span>I have to work that out on paper, too.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I make so many mistakes that it takes me perhaps
twenty minutes just to repeat the simple process.<span style="mso-spacerun: yes;"> </span>And checking all the calculations again takes
me another half an hour, and I’m still not sure I’m right.<span style="mso-spacerun: yes;"> </span>So far, I’ve gotten three different answers,
but the final one seems right.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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 <i style="mso-bidi-font-style: normal;">anyone</i>
should be able to figure this out easily.<span style="mso-spacerun: yes;">
</span>The point is that <i style="mso-bidi-font-style: normal;">I</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.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="SpaceBefore">
If ever I need clear demonstration of my decline,
something like this is it.<span style="mso-spacerun: yes;"> </span>I have no
idea why my decline <span style="background-color: white;"><a href="http://davidhilfiker.blogspot.com/2013_10_01_archive.html" target="_blank"><span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto auto;">doesn’t show up</span></a><a href="https://www.blogger.com/null" name="_ftnref1" style="mso-footnote-id: ftn1;" title=""><span class="MsoFootnoteReference"><span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto auto; font-size: 9pt;"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto auto; font-size: 9pt;"></span></span></span></span></span></a>
</span>on cognitive testing, but the reality is obvious.</div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph">
For about a minute I notice myself getting depressed
about it, but that lifts pretty quickly.<span style="mso-spacerun: yes;">
</span>I already know that I’m cognitively impaired.<span style="mso-spacerun: yes;"> </span>Do I really care how fast the tips of the
propellers are moving? <span style="mso-spacerun: yes;"> </span>No, I don’t.<span style="mso-spacerun: yes;"> </span>(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.)<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Values change.<span style="mso-spacerun: yes;">
</span>I enjoy most of my new values better than the ones they’ve replaced.<span style="mso-spacerun: yes;"> </span>I’ll put up with the occasional confusion.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com9tag:blogger.com,1999:blog-6426202096598051070.post-87005285875158002922014-08-04T11:34:00.000-04:002014-08-04T11:34:00.415-04:00Disappointment<div class="FlushParagraph" style="text-align: right;">
Washington DC</div>
<br />
A close friend, blogger and author Carol Marsh <a href="http://painandspirituality.blogspot.com/2014/07/am-i-afraid-of-getting-well.html">recently
wrote</a> of her fear of a treatment that might alleviate the worst of the
migraine headaches that have disabled her for years.<span style="mso-spacerun: yes;"> </span>She was scheduled to undergo the new
treatment the following day and was noticing her anxiety and fear about the
procedure: <br />
<ul>
<li>the possibility that she might have negative reactions to
the medication, </li>
<li>the pain of the procedure itself, </li>
<li>her disappointment if the treatment didn’t work.<span style="mso-spacerun: yes;"> </span></li>
</ul>
<div class="FlushParagraph">
But she also noted another cause of her anxiety:<br />
<ul>
<li>the
fear that the treatment might work and relieve much of her pain.</li>
<li>If she were no longer disabled, could she, at 60, get a
job after her disability check was cut off?</li>
<li>Others admire her for getting a university degree in
Creative Writing while suffering almost constant pain.<span style="mso-spacerun: yes;"> </span>If she were no longer disabled, what would
there be to admire?</li>
<li>She feels sometimes that her whole life has revolved
around coping with her pain.<span style="mso-spacerun: yes;"> </span>What was
she going to do as an able person?</li>
<li>Silly as it may sound, she even fears not getting enough
sleep if she can’t take to her bed anytime she feels tired.</li>
</ul>
</div>
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<![endif]-->If she’s no longer disabled, who is she?
<br />
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<br /></div>
<div class="NormalParagraph">
She well understands that her fears of <span style="mso-spacerun: yes;"> </span>getting well might seem ridiculous to most
people.<span style="mso-spacerun: yes;"> </span>Nevertheless, they are real.</div>
<div class="NormalParagraph">
<br /></div>
<div class="SpaceBefore">
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.<span style="mso-spacerun: yes;"> </span>I’ve written
about it in previous posts (for instance, <a href="http://davidhilfiker.blogspot.com/2014/01/letting-go-third-time-around_29.html">here</a>)
but never quite so clearly and succinctly as Carol has.</div>
<ul>
<li>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.<span style="mso-spacerun: yes;"> </span>I didn’t want to
give it up.</li>
<li>I had learned to let go of difficult tasks without
feeling selfish.</li>
<li>My life-long anxiety about not doing enough lost its
power over me.</li>
<li>I felt gratitude for my life, for my friends, for my
community that I’d never felt before.</li>
<li>With that gratitude and with the security in my vocation,
I’d become a nicer person.</li>
</ul>
<div class="FlushParagraph">
How much of that would I lose?</div>
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<br /></div>
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I was relieved and grateful of course that I no longer
had Alzheimer’s.<span style="mso-spacerun: yes;"> </span>But my disappointment seemed
often to outweigh my gratitude.<span style="mso-spacerun: yes;"> </span>I felt
like a fraud who had duped interviewers, audiences and suffering people for my
fame.<span style="mso-spacerun: yes;"> </span>I was no longer the person I had
thought I was.<span style="mso-spacerun: yes;"> </span>Who was I?</div>
<div class="NormalParagraph">
<br /></div>
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We depend on our identities—including the painful ones—to
order our lives, even to give them meaning.<span style="mso-spacerun: yes;">
</span>For the first half of my adult life, for instance, I suffered from
untreated depression.<span style="mso-spacerun: yes;"> </span>I thought of
myself as a “depressed person.”<span style="mso-spacerun: yes;"> </span>Then new
medication dispelled virtually all my depression.<span style="mso-spacerun: yes;"> </span>I was ecstatic without any sort of disappointment,
not even a sliver … or so I thought.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
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Nevertheless, even after twenty years, I’ve never
quite given up being a “depressed person.” <span style="mso-spacerun: yes;"> </span>There were little benefits: </div>
<ul>
<li>I had a ready excuse to decline social invitations I
wouldn’t have wanted anyway.<span style="mso-spacerun: yes;"> </span></li>
<li>I could finally admit that I was unhappy as a doctor and give
myself permission to leave the profession.<span style="mso-spacerun: yes;">
</span></li>
<li>The reality of my depressions had become an important
part of the lectures I gave.<span style="mso-spacerun: yes;"> </span></li>
</ul>
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In ways I didn’t recognize then, I actually <i style="mso-bidi-font-style: normal;">missed </i>my depression.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
<div class="SpaceBefore">
Identity is a huge part of us.<span style="mso-spacerun: yes;"> </span>Even the painful threads of our identity
haven been woven into the fabric of ourselves.<span style="mso-spacerun: yes;">
</span>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. </div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com6tag:blogger.com,1999:blog-6426202096598051070.post-69026955868152010272014-07-28T19:49:00.004-04:002014-07-28T19:53:27.874-04:00Where have you been?<div style="text-align: right;">
Washington DC </div>
<div class="NormalParagraph">
I realize I haven’t written anything for almost three
weeks.<span style="mso-spacerun: yes;"> </span>One kind soul even emailed me inquiring
after my health.<span style="mso-spacerun: yes;"> </span>It’s true that I was
out of Internet range for a week and I’ve been struggling with a smashed
collarbone** <a href="https://www.blogger.com/blogger.g?blogID=6426202096598051070#_ftn1" name="_ftnref1" style="mso-footnote-id: ftn1;" title=""></a>for the last ten days that has made typing difficult.<span style="mso-spacerun: yes;"> </span>But the reality is that I haven’t had much to
say.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I’m fine.<span style="mso-spacerun: yes;"> </span>Physically
the pain from the collarbone injury doesn’t bother much except at night.<span style="mso-spacerun: yes;"> </span>I continue to struggle with the mild
cognitive decline that impairs my memory and makes certain intellectual tasks
more difficult.<span style="mso-spacerun: yes;"> </span>But I’ve gotten used to the
limitations; there doesn’t seem to be much (if any) progression; and my life is
otherwise <a href="http://davidhilfiker.blogspot.com/2012/12/how-is-it-possible-to-be-so-happy-with.html">so
much better</a> than before my decline that I don’t think about it much anymore.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I appreciate the little community that has sprung up
around this site, and I want to stay in touch.<span style="mso-spacerun: yes;">
</span>I’ll continue to write if I have anything to say. <span style="mso-spacerun: yes;"> </span>I will, however, be out of town for the next
month with limited Internet access.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>If I am inspired, I’ll find some way to
publish the results here on the blog while I’m away.<span style="mso-spacerun: yes;"> </span>Otherwise, I’ll be back in September.</div>
<div style="mso-element: footnote-list;">
<br clear="all" />
<hr align="left" size="1" width="33%" />
<div id="ftn1" style="mso-element: footnote;">
<div class="MsoFootnoteText">
** 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.<span style="mso-spacerun: yes;"> </span>If you open your door without looking, a
bicyclist has no chance.<span style="mso-spacerun: yes;"> </span>A week ago
Saturday I was riding in a bike lane on a side street.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>I wear a helmet of course, but if I’d been five inches closer to the car,
it would have smashed my face in.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I’ve ridden in the city for
years and intend to continue to do so (for convenience, health, financial and
ecological reasons).<span style="mso-spacerun: yes;"> </span>So please watch out
for me and my brothers and sisters as you’re getting out of your car.</div>
</div>
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<![endif]-->David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com7tag:blogger.com,1999:blog-6426202096598051070.post-84877522645353091782014-07-09T12:50:00.001-04:002014-07-09T12:54:05.542-04:00Racism in My Community?<div style="text-align: right;">
Washington DC </div>
This past Sunday morning I offered a <a href="http://8th-day.org/sermons/racism-eighth-day">teaching</a> in our small
Eighth Day <a href="http://8th-day.org/">Faith Community</a>.<span style="mso-spacerun: yes;"> </span>We’re a lay-led church and take turns
preaching or teaching.<span style="mso-spacerun: yes;"> </span>I spoke about
racism.<span style="mso-spacerun: yes;"> </span>It’s not that racism, in the
usual sense,<a href="https://www.blogger.com/blogger.g?blogID=6426202096598051070#_ftn1" name="_ftnref1" style="mso-footnote-id: ftn1;" title=""><span class="MsoFootnoteReference"><span style="font-size: 9.0pt; mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt;"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-size: 9.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-font-kerning: .5pt;"></span></span></span></span></span></a> runs
rampant through the church; quite the opposite.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>But, like all white institutions in the
United States, racism permeates our structures while our unconscious prejudices
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<br /></div>
<div class="NormalParagraph">
During the past year or two, a number of us from the
community have participated in <a href="http://rootsofjusticetraining.org/workshops/damascusroad/">anti-racism
training</a> and have become quite sensitized to the nature of American racism,
both personally and in our institutions, including Eighth Day.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>So my intent in teaching was to try to heal
some of the division by sharing my perceptions.</div>
<div class="NormalParagraph">
<br /></div>
<div class="SpaceBefore">
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.<span style="mso-spacerun: yes;"> </span>I now feel much more
emotionally and spiritually bonded to the community.<span style="mso-spacerun: yes;"> </span>I take real joy in my relationships with
others, which was often not the case in my past.<span style="mso-spacerun: yes;"> </span>As I <a href="http://davidhilfiker.blogspot.com/2014/06/evoking-gifts.html">wrote</a>
several weeks ago, I’ve become more comfortable with myself and more accepting
of my gifts.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph">
One implication is that the nature my leadership in
our community has changed.<span style="mso-spacerun: yes;"> </span>In becoming
more joyful and less intense, I listen more.<span style="mso-spacerun: yes;">
</span>In developing strong relationships with people, I know more profoundly what
is happening in the community.<span style="mso-spacerun: yes;"> </span>Through
our anti-racism training and our small “<a href="http://8th-day.org/basic-info/mission-groups">mission group</a>” 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.<span style="mso-spacerun: yes;">
</span>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.**<a href="https://www.blogger.com/blogger.g?blogID=6426202096598051070#_ftn2" name="_ftnref2" style="mso-footnote-id: ftn2;" title=""><span class="MsoFootnoteReference"><span style="font-size: 9.0pt; mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt;"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-size: 9.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-font-kerning: .5pt;"></span></span></span></span></span></a></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>Once again I find myself more grateful to my
cognitive changes than disappointed by them.</div>
<div style="mso-element: footnote-list;">
<hr align="left" size="1" width="33%" />
<div id="ftn1" style="mso-element: footnote;">
<div class="MsoFootnoteText">
<span class="FooterChar"><span lang="X-NONE" style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span></span><span class="FooterChar"><span lang="X-NONE" style="mso-bidi-font-family: "Times New Roman";"></span></span></div>
</div>
</div>
* Racism re-defined as (<span class="FooterChar"><span style="mso-bidi-font-family: "Times New Roman";">often</span></span><span class="FooterChar"><span lang="X-NONE" style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: Calibri;">)</span></span><span class="FooterChar"><span lang="X-NONE" style="mso-bidi-font-family: "Times New Roman";">
unconscious</span></span><span class="FooterChar"><span lang="X-NONE" style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: Calibri;">,
undesired prejudices plus institutional power may not a familiar concept to most
people.<span style="mso-spacerun: yes;"> </span>I’ve explained it much more
fully in my </span></span><span lang="X-NONE"><a href="http://8th-day.org/sermons/racism-eighth-day">teaching</a>.</span><br />
<span lang="X-NONE"><span lang="X-NONE"><span lang="X-NONE">** After the service two different people said I was probably the
only person in the community who could have given the teaching.<span style="mso-spacerun: yes;"> </span>Be that as it may, it does indicate something
of my role in our little fellowship.</span></span> </span><span class="FooterChar"><span lang="X-NONE" style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span></span>David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com6tag:blogger.com,1999:blog-6426202096598051070.post-19036953121179678192014-07-03T21:03:00.001-04:002014-07-03T21:08:18.016-04:00Memento<div style="text-align: right;">
Washington DC </div>
Over ten years ago my son took me to see the movie <i style="mso-bidi-font-style: normal;">Memento</i>, which he’d seen several times
already and was sure I would enjoy.<span style="mso-spacerun: yes;"> </span>It
was an intentionally disjointed story that I couldn’t follow completely, so,
while it was interesting, I’m not sure I <i style="mso-bidi-font-style: normal;">enjoyed
</i>it.<span style="mso-spacerun: yes;"> </span>One theme of the film, however,
was an exploration of memory.**<span style="mso-spacerun: yes;"> </span>At the beginning of the movie, we see
Leonard, the story’s protagonist, killing Teddy, whom he believes murdered his
wife.<span style="mso-spacerun: yes;"> </span>Leonard, however, has anterograde
amnesia, meaning that he can remember nothing except the last few minutes of
his past.<span style="mso-spacerun: yes;"> </span>He’s compensated for his impairment
by keeping a record of his past in notes, photos, and tattoos.<span style="mso-spacerun: yes;"> </span>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.<br />
<br />
<div class="NormalParagraph">
I turns out that Leonard has completely misunderstood
the implications of his notes, photos, and tattoos.<span style="mso-spacerun: yes;"> </span>Later in the movie, we learn that the person
he eventually kills is actually innocent of the murder.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="SpaceBefore">
Memory is the foundation of rational action, of
course.<span style="mso-spacerun: yes;"> </span>But it’s more.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph" style="tab-stops: 91.0pt;">
My loss of memory is, of
course, in nowhere near the same category as Leonard’s.<span style="mso-spacerun: yes;"> </span>Nevertheless, I get glimpses of what it’s
like to be him.<span style="mso-spacerun: yes;"> </span>For instance:</div>
<ul>
<li>I don’t know this person standing in front of me is; but
should I?<span style="mso-spacerun: yes;"> </span></li>
<li>Have I already told this story to my son-in-law during
his two-day visit or was it someone else I told?<span style="mso-spacerun: yes;"> </span></li>
<li>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?</li>
</ul>
<div class="NormalParagraph" style="tab-stops: 91.0pt;">
At our leadership team
meeting after church this week, I had only the foggiest idea of what had
happened in the previous meeting.<span style="mso-spacerun: yes;"> </span>The
other three people had each brought a paper they’d clearly read in advance, so I
must have received it, too.<span style="mso-spacerun: yes;"> </span>Had I just
forgotten to read it and bring it; or did I somehow not obtain it; or had I
thrown it away altogether?<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>What bothers me most is this low-level
disorientation.<span style="mso-spacerun: yes;"> </span>Am I throwing things
away that I should keep or just forgetting them?<span style="mso-spacerun: yes;"> </span>Why don’t I get around to creating the memory
aids?<span style="mso-spacerun: yes;"> </span>How many of my questions are
things I should already know?<span style="mso-spacerun: yes;"> </span>Should I
even participate in the discussion?</div>
<div class="NormalParagraph" style="tab-stops: 91.0pt;">
<br /></div>
<div class="NormalParagraph" style="tab-stops: 91.0pt;">
I’m not really confused, just
sometimes a little lost.<span style="mso-spacerun: yes;"> </span>I’m sure lots
of other people experience some of this same disorientation.<span style="mso-spacerun: yes;"> </span>Nevertheless, my questions to myself can sometimes
make me wonder just who I’ve been.<span style="mso-spacerun: yes;"> </span>It’s
just unnerving enough to give me images of what it might be like when memory really
slips away.</div>
<div style="mso-element: footnote-list;">
<hr align="left" size="1" width="33%" />
<div id="ftn1" style="mso-element: footnote;">
<div class="MsoFootnoteText">
** Fair disclosure: I don’t remember all of the following details; I looked them
up in <a href="http://en.wikipedia.org/wiki/Memento_%28film%29">Wikipedia</a>.<span style="mso-spacerun: yes;"> </span></div>
</div>
</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com7tag:blogger.com,1999:blog-6426202096598051070.post-69867838696555566622014-06-24T09:33:00.002-04:002014-06-24T09:39:50.205-04:00Less Confusion; Memory Still Impaired<div class="NormalParagraph" style="margin: 0in 0in 6pt; text-align: right; text-indent: 0in;">
Washington
DC</div>
<div class="NormalParagraph" style="margin-bottom: 6.0pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; mso-line-height-alt: 0pt; tab-stops: right 5.3in; text-indent: 0in;">
Several Sundays ago, I was walking home from church and
thinking about how I would spend the rest of the day.<span style="mso-spacerun: yes;"> </span>The afternoon seemed more wide open than I
had anticipated.<span style="mso-spacerun: yes;"> </span>Suddenly I realized
why: I was supposed to be at a church leadership team meeting.<span style="mso-spacerun: yes;"> </span>I had looked at my calendar several times
during the week so I had known it was coming.<span style="mso-spacerun: yes;">
</span>I’d even remembered it during the morning service.<span style="mso-spacerun: yes;"> </span>Nevertheless, I’d forgotten.<span style="mso-spacerun: yes;"> </span>I walked back quickly and was only a little
late.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Part of our agenda was for each of us to report whether
we wanted to stay on the team another year.<span style="mso-spacerun: yes;">
</span>Kent asked me whether I thought my cognitive impairment would interfere
with my work.<span style="mso-spacerun: yes;"> </span>I told him the impairment
had been almost stable for a year.<span style="mso-spacerun: yes;"> </span>Later,
I worried that Kent’s own judgment was that I should leave the team because my
memory was so bad.<span style="mso-spacerun: yes;"> </span>I asked him.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
He agreed it was obvious that I had memory problems,
but my awareness of my impairment made it a non-issue for the team.<span style="mso-spacerun: yes;"> </span>He encouraged me to stay on.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="SpaceBefore">
Our church meets in a room that is used by others during
the week.<span style="mso-spacerun: yes;"> </span>Someone has to arrive early,
get the chairs out, and set up for the service.<span style="mso-spacerun: yes;">
</span>A small group of us takes the fourth Sunday of the month, so this past
Sunday was our turn.<span style="mso-spacerun: yes;"> </span>I’ve done this
every month for several years.<span style="mso-spacerun: yes;"> </span>I have it
in my calendar as a regular task.<span style="mso-spacerun: yes;">
</span>Nevertheless, I forgot completely.<span style="mso-spacerun: yes;">
</span>Even when I got to the service and said hello to Maria, the person in
charge of our setting up, I didn’t remember.<span style="mso-spacerun: yes;">
</span>It was only half way through the service when I wondered why Maria (who
ordinarily leads worship on our set-up Sunday) was leading today that I
realized I’d forgotten.</div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph">
I apologized to Maria after the service, of course,
and she was as gracious as always.<span style="mso-spacerun: yes;"> </span>It
was more than graciousness, though.<span style="mso-spacerun: yes;"> </span>Like
Kent, Maria knows me well.<span style="mso-spacerun: yes;"> </span>She’s been
with me through the ups and downs of this long struggle.<span style="mso-spacerun: yes;"> </span>We both know that we can’t count on my
memory.<span style="mso-spacerun: yes;"> </span>I do my best, and she knows it.<span style="mso-spacerun: yes;"> </span>When I screw up, we both know what’s
happening, so there’s easy forgiveness on her side and little embarrassment on
my side.<span style="mso-spacerun: yes;"> </span>I am grateful.</div>
<div class="NormalParagraph">
<br /></div>
<div class="SpaceBefore">
Over the past year, my memory impairment may have gotten a
little worse, but my episodes of confusion are considerably less severe than
they were. <span style="mso-spacerun: yes;"> </span>One of the big changes is
that I’m no longer having those episodes that <i style="mso-bidi-font-style: normal;">anyone</i> would recognize as impairment.<span style="mso-spacerun: yes;"> </span>Rather, as with the two stories above, people
to whom I describe them are more likely to respond that they could happen to
anybody.<span style="mso-spacerun: yes;"> </span>I’ve written <a href="http://davidhilfiker.blogspot.com/2013/11/the-truth-of-this-blog.html">before</a>
about the difference.</div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph">
The slightly worsening memory could even be the
influence of aging.<span style="mso-spacerun: yes;"> </span>So it seems I’m
recovering a little.<span style="mso-spacerun: yes;"> </span>I tend to see the
gifts of my decline more than the limitations.<span style="mso-spacerun: yes;">
</span>It’s an interesting space I inhabit.<span style="mso-spacerun: yes;">
</span>Impaired, forgiven, loved and included.<span style="mso-spacerun: yes;">
</span>The future is, as it always is, unknowable, but I’m as <a href="http://davidhilfiker.blogspot.com/2012/12/how-is-it-possible-to-be-so-happy-with.html">content
as at any time in my life</a>.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com8tag:blogger.com,1999:blog-6426202096598051070.post-76486400993629281062014-06-18T14:09:00.000-04:002014-06-18T14:10:20.061-04:00Evoking Gifts<div style="text-align: right;">
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<br />
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The mission group is a key structure of our little <a href="http://www.8th-day.org/">church</a>, a place in which we share the most
important parts of our inner lives, hold each other accountable for our
spiritual practices (tithing, daily quiet time, a yearly silent retreat and
others), study together, and engage in a common task that might make the world
a better place.<span style="mso-spacerun: yes;"> </span>It’s a small group
(usually three to six people), a place of more intimate belonging within the
larger faith community.<span style="mso-spacerun: yes;"> </span>I belong to the interracial
Racial Justice and Healing mission group.<span style="mso-spacerun: yes;">
</span>We have a vision of ending the racism within our own church and in the
nation.<span style="mso-spacerun: yes;"> </span>We meet for about three hours
per week.</div>
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<br /></div>
<div class="NormalParagraph">
In our faith community we have come to believe that
every member has an important role to play.<span style="mso-spacerun: yes;">
</span>When a mission group organizes itself or a new member joins, we spend over
an hour per person in evoking their individual gifts to help discover that
unique role.<span style="mso-spacerun: yes;"> </span>By “evoking gifts” we mean
discerning each person’s specific characteristics and abilities that may
contribute to the group, naming them and affirming them.<span style="mso-spacerun: yes;"> </span>This past Saturday was my turn.<span style="mso-spacerun: yes;"> </span>We went around the circle, and each person
described the gifts they saw in me.<span style="mso-spacerun: yes;"> </span>It’s
an amazing experience!<span style="mso-spacerun: yes;"> </span>How often do we affirm
the value of one another?</div>
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<br /></div>
<div class="NormalParagraph">
I was not exactly surprised by what the others
said.<span style="mso-spacerun: yes;"> </span>After more than a half century of
introspection, I know my strengths and weaknesses fairly well, but it’s
powerfully affirming to know that others see my gifts, too. </div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
One of the things I’ve known about myself is that I
can be a good leader; I do have those gifts, which were again mentioned on
Saturday.<span style="mso-spacerun: yes;"> </span>I have rarely, however, found joy
in active leadership.<span style="mso-spacerun: yes;"> </span>Because I usually
see and appreciate the many sides of an issue, for instance, it’s painful to try
to lead a group to a decision.<span style="mso-spacerun: yes;"> </span>I’m quite
sensitive to the needs of others (and have a fear of conflict besides), so, as
another example, it’s hard to cut someone off who’s talking too much or whose
point is only tangential.<span style="mso-spacerun: yes;"> </span>Responsible
for the meeting, I worry about whether we’re being productive.<span style="mso-spacerun: yes;"> </span>And so on.<span style="mso-spacerun: yes;">
</span>I don’t enjoy it.</div>
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<br /></div>
<div class="NormalParagraph">
I grew up believing, however, that if a need existed and
I had the gifts to meet that need, I had the <i style="mso-bidi-font-style: normal;">responsibility</i>
to take it on.<span style="mso-spacerun: yes;"> </span>Not only did that sense
of responsibility lead me into doing too much, but it also led me into
positions of active leadership that often made me miserable.<span style="mso-spacerun: yes;"> </span>I had the gifts … so I had to take the role.</div>
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<br /></div>
<div class="NormalParagraph">
When I realized two years ago that I was losing some
of my cognitive ability, I began <a href="http://davidhilfiker.blogspot.com/2013/02/letting-go.html">turning down opportunities</a>
that didn’t give me joy … including active leadership.<span style="mso-spacerun: yes;"> </span>It’s one of the reasons I’ve been so much
happier since my diagnosis.<span style="mso-spacerun: yes;"> </span>As my
cognitive impairment seems to have stabilized, I have continued to avoid active
leadership, but I’ve felt a nagging guilt about “shirking my responsibility.”</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
On Saturday, as I allowed myself to acknowledge the
gifts others saw in me, however, I began to understand that I could offer leadership
from behind as well.<span style="mso-spacerun: yes;"> </span>Having insight and
discernment without being attached to the outcome is a gift, as are listening
deeply, understanding and affirming others, offering an elder’s wisdom, or supporting
the group in its process.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
The act of listening is not only a prelude to getting
something else done but also a gift in itself.<span style="mso-spacerun: yes;">
</span>Listening doesn’t require me to march into action.<span style="mso-spacerun: yes;"> </span>It’s enough to listen with compassion, love,
wisdom and discernment.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I would call this “leadership from behind,” and, over
the last two years, it’s become part of who I am.<span style="mso-spacerun: yes;"> </span>Sometimes I hear something said that others
don’t seem to hear, and it’s helpful to point it out.<span style="mso-spacerun: yes;"> </span>Sometimes there are seemingly contradictory
opinions or suggestions, but I may see common themes that, when I articulate
them, can bring the group together rather than divide us.<span style="mso-spacerun: yes;"> </span>What my mission group was saying, I think, is
that these are important gifts to the community.</div>
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<br /></div>
<div class="NormalParagraph">
This, too, is leadership … only this time I enjoy it. </div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
This willingness to draw back and listen without the
need to <i style="mso-bidi-font-style: normal;">do</i> anything has been one of
the paradoxical gifts of my impairment. <span style="mso-spacerun: yes;"> </span>I have learned to let go of some of a
previously overdeveloped sense of responsibility, and I’m grateful. </div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Oh, and, by the way, a couple of people mentioned that
I could be funny.<span style="mso-spacerun: yes;"> </span>I like to think I am
but since most people either don’t get my humor or don’t think it’s funny, it
was good to be affirmed … by a few people, anyway.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com7tag:blogger.com,1999:blog-6426202096598051070.post-68863481713136861922014-06-08T22:01:00.000-04:002014-06-13T22:42:09.934-04:00More on Not Being Fed When You Can’t Feed Yourself<div class="HeadingParagraph" style="text-align: right;">
Washington DC</div>
As when I wrote <a href="http://davidhilfiker.blogspot.com/2013/04/why-not-suicide.html">about
suicide</a> in April of 2013, my <a href="http://davidhilfiker.blogspot.com/2014/06/would-it-be-suicide_2.html?showComment=1401912771507">last
post</a> about not feeding a person with end-stage dementia (or any other
terminal illness) drew many comments and emails.<span style="mso-spacerun: yes;"> </span>If you’re like me, you don’t read all the
comments of all the blogs you visit, but these comments seem important enough
to deserve their own post.
<br />
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I suppose I shouldn’t be surprised, but there is an
entire literature about the topic of not feeding at the end of life.<span style="mso-spacerun: yes;"> </span>It even has its own acronym, VSED (voluntarily
stopping eating and drinking).<span style="mso-spacerun: yes;"> </span>A friend
emailed me this <a href="http://medicalfutility.blogspot.com/2014/05/vsed-tedx-video-not-here-by-choice.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+MedicalFutilityBlog+%28Medical+Futility+Blog%29">link</a>
to a webpage that offers a TED-talk video of a spouse describing her husband’s
decision to refuse sustenance; the same page links to a number of other stories
and professional articles about the choice of VSED, especially about its
legality and its difference from assisted suicide.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
As the acronym indicates, however, most of that
literature seems to be about terminally ill patients who are still quite
capable of feeding themselves but <i style="mso-bidi-font-style: normal;">voluntarily</i>
stop eating.<span style="mso-spacerun: yes;"> </span>VSED should be
differentiated, it seems to me, from not feeding a person who has lost the
capacity to feed himself.<span style="mso-spacerun: yes;"> </span>The latter is
a choice <i style="mso-bidi-font-style: normal;">not to prolong</i> a life that
is clearly near its end, while VSED is a decision to <i style="mso-bidi-font-style: normal;">shorten </i>one’s life, a decision that anyone could make regardless of
medical condition.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="QuoteParagraph">
What is most helpful about the literature on VSED is
that even this (which ethically could be considered a step closer to suicide) is
legal almost everywhere.<span style="mso-spacerun: yes;"> </span>Two legal
experts on the topic write in the <a href="http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1689049">abstract of
their law review article</a>: </div>
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<blockquote class="tr_bq">
<div class="QuoteParagraph">
Specifically, we argue that both contemporaneous [made
at the time) and (most) non-contemporaneous decisions for VSED are legally
permissible. Individuals may refuse nutrition and hydration just as they may
refuse other intrusions on their personal autonomy. This right is grounded in
the common law of battery, statutes, state constitutions, and even the U.S.
Constitution. Moreover, VSED does not, as many believe, constitute abuse,
neglect, or assisted suicide. Even ex ante [before the event] decisions for
VSED (exercised through an advance directive or a surrogate decision maker) are
legal in most United States jurisdictions.</div>
</blockquote>
<div class="NormalParagraph">
Another commenter countered my implication that
nursing homes won’t cooperate with such a decision.<span style="mso-spacerun: yes;"> </span>He wrote that most nursing homes and hospices
will agree not to feed residents who have previously prepared appropriately and
left advance directives (“living wills”), documenting their desire not to be
fed when they can no longer feed themselves.<span style="mso-spacerun: yes;">
</span>So, anyone contemplating either nursing home or assisted living who is interested in
not being fed should inquire about the policies of the institutions being
considered.</div>
<div class="NormalParagraph">
<br /></div>
<div class="QuoteParagraph">
Several other comments and emails offered stories of
the writers’ experience with not feeding.<span style="mso-spacerun: yes;">
</span>Especially important is the point made by Lee Ann Gerleman (a nurse with
lots of experience with death) that dying from dehydration is not an especially
difficult way to die:</div>
<blockquote class="tr_bq">
<div class="QuoteParagraph">
People have a real problem sometimes with withholding
food or water from their loved one. Actually, dehydration takes away pain.
Someone dehydrated, in a coma or sleeping most of the time doesn't feel pain
anymore. Its nature's way.</div>
</blockquote>
<div class="NormalParagraph">
I should emphasize, however, that in the process of
dying, any person can experience some pain and discomfort even if the
underlying illness is not painful in itself.<span style="mso-spacerun: yes;">
</span>This is usually not severe and can be controlled with pain medications
if necessary, but it is a result of the dying process not the withholding of
food and water.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Another writer reminded me that even without any
water, it can take much longer to die than one would think, in her mother’s
case, six days.<span style="mso-spacerun: yes;"> </span>This was also our
experience at Joseph's House when residents were sometimes unable even to be
fed during their last days.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
A very important comment came from someone who pointed
out that the meaning of “no longer able to feed onself” can be a little
unclear:</div>
<blockquote class="tr_bq">
<div class="QuoteParagraph">
[I]n our nursing home setting, when someone is having
difficulty chewing or swallowing or pushes away food, the first step is usually
moving to a food texture which is easier to manage, such as minced food, or
adding extra gravy. A further step would be to pureed food. In many cases,
residents still feed themselves these meals. Another thing we see is that when
people stop feeding themselves [but are then] given a fork & knife or spoon, they may
still feed themselves very well or when provided with finger foods such as
sandwiches or cookies or a banana. And they may drink very well when the cup is
placed into their hands but not drink at all if they have to reach for the cup
on their own.</div>
</blockquote>
<div class="NormalParagraph">
The obvious implication is that in prior discussions
with family and writing the advance directive, you need to be clear about what
you intend by “no longer able to feed oneself.”</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I’m grateful to all of you who made comments or wrote
emails.<span style="mso-spacerun: yes;"> </span>I encourage such comments
because they are often very helpful in clarifying and adding to what I have
written.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com11tag:blogger.com,1999:blog-6426202096598051070.post-89208481364704271792014-06-02T14:52:00.000-04:002014-06-02T14:55:50.188-04:00Would It Be Suicide?<div style="text-align: right;">
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<![endif]-->Washington DC
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On seeing an Alzheimer’s patient (or any other person)
lying comatose and terminally ill in a nursing home bed, almost everyone
thinks, “I don’t want to die like that!” (See my <a href="http://davidhilfiker.blogspot.com/2014/05/a-fate-worse-than-death.html">last
post</a>).<span style="mso-spacerun: yes;"> </span>That raises the question of
suicide.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></div>
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When I believed I had Alzheimer’s, I didn’t seriously entertain
the possibility of killing myself for a number of <a href="http://davidhilfiker.blogspot.com/2013/04/why-not-suicide.html">practical
reasons</a>.<span style="mso-spacerun: yes;"> </span>The most important was that
people with dementia are still capable of meaningful relationship well into the
course of their disease, and many readers (<a href="http://davidhilfiker.blogspot.com/2013/05/theyre-still-in-there.html">Lee
Ann Gerleman</a>, among others) insist that the often-difficult season of caring
for a person who may not even recognize family offers many joyous times, too.<span style="mso-spacerun: yes;"> </span>The only reason I could imagine for checking
out early was to prevent the burden of caregiving on someone I love.<span style="mso-spacerun: yes;"> </span>No matter how deep our relationship, I didn’t
want to burden my wife Marja with caring for me when I became completely
incapable of relationship or unable to tend to my own physical needs.<span style="mso-spacerun: yes;"> </span></div>
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I thought often about the conflict between my unwillingness
to foist upon Marja my care in the last stages of my illness and my choice not
to suicide.<span style="mso-spacerun: yes;"> </span>At one point, however, a
woman wrote me that her husband (who had Alzheimer’s) decided upon something “in
between” suicide and the burden of care in the last stage of the disease.<span style="mso-spacerun: yes;"> </span>They agreed that when he reached the point
where he could no longer feed himself, no one else would feed him, either.<span style="mso-spacerun: yes;"> </span>When the time came and she withheld food and
water, her husband died within two weeks.<span style="mso-spacerun: yes;">
</span></div>
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At <a href="http://davidhilfiker.blogspot.com/2013/01/josephs-house-and-its-interns.html">Joseph’s
House</a>, we’ve had analogous experiences of people <i style="mso-bidi-font-style: normal;">unable </i>to eat or drink as they neared the end of their lives.<span style="mso-spacerun: yes;"> </span>As we do for all other residents, we accompanied
them around-the-clock, and death from lack of food or water seemed to us no more
painful or difficult than the deaths of the many others we accompany.</div>
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I’ve asked myself whether deciding against food or
water when I am terminally ill is a form of suicide.<span style="mso-spacerun: yes;"> </span>I don’t think it is.<span style="mso-spacerun: yes;"> </span>It’s rather more like deciding against what
the medical world calls “extraordinary measures,” for instance, choosing not to
put a terminally ill patient on a respirator, an acceptable and common medical practice.<span style="mso-spacerun: yes;"> </span>I can see little moral or emotional
difference between, on the one hand, not feeding a person and, on the other, choosing
not to put in a feeding tube or treat an infection in the last stages of
disease.<span style="mso-spacerun: yes;"> </span></div>
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Arranging not to be fed seemed like a good middle
ground.<span style="mso-spacerun: yes;"> </span>I talked about it extensively
with Marja, my children and some others close to me, and we agreed upon that
course.<span style="mso-spacerun: yes;"> </span>We realized that if I were in a
nursing home, however, such a decision would probably not be allowed, so my
family would have to take me out to die at home … a better choice, anyway.<span style="mso-spacerun: yes;"> </span>I made my decision formal by filling out the
appropriate legal documents.<span style="mso-spacerun: yes;"> </span>Legally, then,
this would be my decision alone, and no one else would have to risk guilt or the
disapproval of others by making such a “heartless” decision for a dying person.<span style="mso-spacerun: yes;"> </span>I’m keeping that living will intact in case my
impairment begins progressing again or I’m in the same situation from another
cause of death.</div>
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I would offer several cautions from my experience as a
physician.<span style="mso-spacerun: yes;"> </span>First, talk the decision through
with <i style="mso-bidi-font-style: normal;">everyone </i>who is close to you or
might be able to cause trouble when the decision needs to be made.<span style="mso-spacerun: yes;"> </span>At Joseph’s House we’ve had relatives come
out of the woodwork at the last minute to insist upon a different course of
action than that decided by the patient and close family, even threatening
legal action when we, for instance, didn’t hospitalize a patient for whom
nothing medically could be done.<span style="mso-spacerun: yes;"> </span>Second,
get it written down; everyone should have a written living will (or <a href="http://en.wikipedia.org/wiki/Advance_health_care_directive">advanced
health care directive</a>), anyway, but especially in this situation.<span style="mso-spacerun: yes;"> </span>This does not need to be prepared by a lawyer
or any third party (see <a href="http://www.agingwithdignity.org/five-wishes.php">Five Wishes</a>).<span style="mso-spacerun: yes;"> </span>Third, find a hospice provider or physician in
your area who will agree to provide support.<span style="mso-spacerun: yes;">
</span>Finally, review the decision with family regularly, perhaps once a year,
until you are no longer capable of doing so.</div>
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There was no debate in our family; it seemed right to
everyone.<span style="mso-spacerun: yes;"> </span>I’m sure Marja would never
have protested the burden of caring for me, but it was important for me to protect
her from those meaningless months or years when the demands of care were
enormous and I was no longer aware of much of anything.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com18tag:blogger.com,1999:blog-6426202096598051070.post-67048346748597623802014-05-29T12:38:00.000-04:002014-05-30T11:40:29.073-04:00“A Fate Worse Than Death”?<div class="TitleParagraph" style="text-align: right;">
Washington DC</div>
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<br /></div>
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In a recent <a href="http://well.blogs.nytimes.com/2014/05/08/the-silence-of-doctors-around-alzheimers/?_php=true&_type=blogs&_php=true&_type=blogs&_r=1&">column</a>
in the NY <i style="mso-bidi-font-style: normal;">Times</i>, physician-author Danielle
Ofri described an incident in which she and another doctor were examining a
patient with Alzheimer’s.<span style="mso-spacerun: yes;"> </span>“A fate worse
than death,” the other doctor murmured.<span style="mso-spacerun: yes;"> </span>Dr
Ofri, too, felt uncomfortable.<span style="mso-spacerun: yes;"> </span></div>
<blockquote class="tr_bq">
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There was something almost shameful in bearing witness
to a fellow human being’s profound indignities.</div>
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The patient had been a prestigious artist and
intellectual and to see him with only a sliver of his former intellectual
capacities was, Dr Ofri wrote, “beyond heartrending.”<span style="mso-spacerun: yes;"> </span></div>
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It’s also heartrending, however, to be in the presence
of a person dying painfully from cancer or of a person with a severe stroke
that leaves her immobilized.<span style="mso-spacerun: yes;"> </span>These
diseases, too, are accompanied by indignities, for instance, having to be wiped
clear after defecating.<span style="mso-spacerun: yes;"> </span>These other
diseases, however, do not create shame. <span style="mso-spacerun: yes;"> </span>Alzheimer’s
does.<span style="mso-spacerun: yes;"> </span>Why?</div>
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Dr Ofri writes,</div>
<blockquote class="tr_bq">
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I was embarrassed <i>for</i> him, for how embarrassed <i>he</i>
would likely be, if his former self could see his current self. That his
current self lacked the capacity to be aware of his state offered little
comfort.<span style="mso-spacerun: yes;"> </span></div>
</blockquote>
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Yes, we are embarrassed because his former self would
have been embarrassed.<span style="mso-spacerun: yes;"> </span>That doesn’t get
us anywhere, though; it still doesn’t answer the question of why he would feel
embarrassed.</div>
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I’d like to suggest that we feel shame because we are
looking at our future self <i style="mso-bidi-font-style: normal;">as if</i> we had
our full mental faculties <i style="mso-bidi-font-style: normal;">and</i> were
still behaving that same way.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
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After I became aware of my cognitive decline (and <a href="http://davidhilfiker.blogspot.com/2014/01/letting-go-third-time-around_29.html">believed
for a year</a> that I had Alzheimer’s), I did not feel embarrassed for myself
even though I had the capacity to be aware of my mistakes.<span style="mso-spacerun: yes;"> </span>I was fully cognizant of my memory deficits
and the problems it caused, and I was aware of my intermittent confusion.<span style="mso-spacerun: yes;"> </span>I had <a href="http://davidhilfiker.blogspot.com/2012/12/a-huge-mistake.html">“lost” the
$24,000</a> through no fault of my own but because my cognition was
impaired.<span style="mso-spacerun: yes;"> </span>I might have been embarrassed
if I hadn’t told everyone I knew about my cognitive decline, but we all knew
what was going on, so there was nothing to be embarrassed about.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph">
True, my decline has been minimal compared to what others
suffer.<span style="mso-spacerun: yes;"> </span>Nevertheless, I do forget names
and faces I should remember; I miss appointments, even those I’ve written on my
calendar; I have to ask others to take over more complicated intellectual tasks
I can’t manage any more.<span style="mso-spacerun: yes;"> </span>I’m rarely
embarrassed, however, and certainly not ashamed.<span style="mso-spacerun: yes;"> </span>It’s not that I lack the capacity to feel shame;
it’s that we all know that there’s a good physical reason I’m incapacitated.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I’m not alone.<span style="mso-spacerun: yes;"> </span>I’ve
<a href="http://davidhilfiker.blogspot.com/2013/05/a-longer-life.html" target="_blank">communicated with other Alzheimer’s patient </a>(mostly in somewhat more advanced
state than I) who also report that they feel little embarrassment or shame.<span style="mso-spacerun: yes;"> </span>Of the hundreds of people who have written
me, no one has even mentioned embarrassment or shame on the part of the person
with Alzheimer’s (and I look forward to some responses to this post).<span style="mso-spacerun: yes;"> </span>Why don’t we experience embarrassment?</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I can only speak for myself, of course, but it seems
to me quite possible that, with increasing cognitive impairment, I will still
be unembarrassed.<span style="mso-spacerun: yes;"> </span>Also, as Dr Ofri
mentions, as the disease progresses, I will become incapable of feeling embarrassed.<span style="mso-spacerun: yes;"> </span><span style="mso-font-kerning: 0pt;">So it’s
entirely possible that at no point in the course of this disease will I feel
embarrassment.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
<span style="mso-font-kerning: 0pt;">Perhaps Alzheimer’s
is not a fate worse than death.<span style="mso-spacerun: yes;"> </span>What
would happen if we began to</span> realize that when we get embarrassed or feel
shame in the presence of a person with dementia we are really imagining a
future we cannot actually imagine?<span style="mso-spacerun: yes;"> </span>Perhaps
we could stop scaring one another and allow ourselves to relate more naturally
to another person’s cognitive impairment.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com16tag:blogger.com,1999:blog-6426202096598051070.post-17307656142724221802014-05-19T11:57:00.000-04:002014-05-19T11:58:03.844-04:00Surprise!<div class="NormalParagraph" style="margin: 0in 0in 6pt; text-align: right; text-indent: 0in;">
Washington
DC</div>
<div class="NormalParagraph">
A week ago Friday, over seventy people crowded into a
friend's house for my wife Marja’s surprise seventieth birthday party.<span style="mso-spacerun: yes;"> </span>She actually had no idea it was coming and
was flabbergasted when we walked in, especially when she saw her brother who
had traveled from his home ninety miles north of Toronto.<span style="mso-spacerun: yes;"> </span>Two of my stepsisters and a brother-in-law
from Cleveland also showed up.<span style="mso-spacerun: yes;"> </span>It was
lovely, even for me who seldom enjoys parties.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
The number of people was staggering.<span style="mso-spacerun: yes;"> </span>We’re not part of large communities: our
small church of perhaps fifty people, our families, and a few of Marja’s former
students.<span style="mso-spacerun: yes;"> </span>But Marja means much to so many
people, and a large percentage came.<span style="mso-spacerun: yes;"> </span>Ten
days later both of us are still basking in the joy of that gathering.<span style="mso-spacerun: yes;"> </span>Marja still mentions it at least daily</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
In the two days before the party, we also surprised
Marja with the arrivals of our two children who weren’t already in the
area.<span style="mso-spacerun: yes;"> </span>Laurel flew in from California and
Kai from Seattle.<span style="mso-spacerun: yes;"> </span>Our younger daughter Karin
had returned earlier in the week from her fifteen-month stay in Delhi, and we
were still elated by that.<span style="mso-spacerun: yes;"> </span>It was
delightful to have our little nuclear family together again for a few days.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
The most beautiful aspect of the party for me was the
several weeks before as I combed through our photo albums and loose stacks of pictures
to find photos of Marja from different phases of her life.<span style="mso-spacerun: yes;"> </span>Especially wonderful for me were the pictures
from her adolescence and early adulthood.<span style="mso-spacerun: yes;">
</span>I’d forgotten how beautiful she was.<span style="mso-spacerun: yes;">
</span>A gentle yet powerful spirit emanates from those pictures.<span style="mso-spacerun: yes;"> </span>I kept thinking: How could a woman so
beautiful have been interested in me?<span style="mso-spacerun: yes;"> </span>I
don’t remember realizing at that time the depth of her spirit, so the pictures
were my own surprise party.<span style="mso-spacerun: yes;"> </span>I scanned
the pictures into digital images and sent the files to Laurel.<span style="mso-spacerun: yes;"> </span>She created a beautiful slide show that
looped continuously throughout the party.<span style="mso-spacerun: yes;">
</span>Every time I looked, there was a cluster of people gathered around the
monitor.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I suppose we become used to the beauty that surrounds
us and it ceases to be startling or, too frequently, even apparent to us.<span style="mso-spacerun: yes;"> </span>Marja and I have been together almost
forty-five years, and so often I forget the beauty between us.<span style="mso-spacerun: yes;"> </span>Every once in a while, though, it will
suddenly break through.<span style="mso-spacerun: yes;"> </span>Each time it comes
as a wonderful surprise, although never so powerfully as when I was selecting
those pictures for the show.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
My ongoing wonder—at both the numbers that showed up
and at Marja and my relationship—reminded me again how much my cognitive
decline has opened me emotionally.<span style="mso-spacerun: yes;"> </span>I
doubt that this depth of joy could have broken through to me before.<span style="mso-spacerun: yes;"> </span>Oh, I’d been intermittently aware of and
grateful for the gifts I’ve been given.<span style="mso-spacerun: yes;"> </span>Intellectually
I would have known the importance of the party and recognized its joy. <span style="mso-spacerun: yes;"> </span>I would not, however, have experienced it so intensely.<span style="mso-spacerun: yes;"> </span>The depth of the joy has been a miracle.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com9tag:blogger.com,1999:blog-6426202096598051070.post-29523259531509817882014-05-13T12:03:00.001-04:002014-05-13T12:05:07.004-04:00Elderly at 69?<div class="NormalParagraph" style="margin: 0in 0in 6pt; text-align: right; text-indent: 0in;">
Washington
DC</div>
<div class="NormalParagraph">
It’s not just my mind that makes me feel old.<span style="mso-spacerun: yes;"> </span>It’s my body, too.<span style="mso-spacerun: yes;"> </span>For the last several years I’ve had a
permanent numbness in my feet caused by a neurological condition known as “peripheral
neuropathy.”<span style="mso-spacerun: yes;"> </span>It makes it difficult for
me to sense anything on the skin of my feet.<span style="mso-spacerun: yes;">
</span>It’s as if I were sensing through a thick piece of cloth, as if I were
wearing socks. <span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Fortunately, it’s not a progressive disease and mine
has been stable for a number of years.<span style="mso-spacerun: yes;">
</span>The worst part is that the nerves responsible for telling my brain just
where my foot bones are in relation to each other (the proprioceptive nerves) are
also affected, so I don’t quite know where my feet are, which means I stumble constantly
and lose my balance easily.<span style="mso-spacerun: yes;"> </span>I don’t know
if the worst part is falling into somebody I’m talking to or swinging wildly for
a couple of steps as I regain my balance.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
So in addition to this declining memory, I feel
physically unsteady, too.<span style="mso-spacerun: yes;"> </span>I sometimes
feel elderly, especially when the person I’m talking to reaches out and steadies
me or when I stumble over nothing. <span style="mso-spacerun: yes;"> </span>(Marja and I hold hands on our evening walk.<span style="mso-spacerun: yes;"> </span>It’s not just cute; it would also protect if
I tripped.)<span style="mso-spacerun: yes;"> </span>Just to be clear, I <i style="mso-bidi-font-style: normal;">know </i>I’m not elderly in either my mind or
body.<span style="mso-spacerun: yes;"> </span>Marja and I backpack into high
mountains, carrying our supplies as we hike for a week.<span style="mso-spacerun: yes;"> </span>Despite the city traffic, I still bicycle
everywhere I go (my overall balance is fine; I just can’t find my feet).<span style="mso-spacerun: yes;"> </span>I do over thirty push-ups most mornings, and
so on. And I still teach, lecture and lead groups well.<span style="mso-spacerun: yes;"> </span>But in a society that seems to value youth
over everything else, it’s a struggle not to feel less-than.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Mostly it’s the same old problem: I’m still hanging on
to a picture of myself from twenty years ago when I was an athlete and could calculate
most everyday math problems in my head.<span style="mso-spacerun: yes;">
</span>As I’ve written in this blog several times before (<a href="http://davidhilfiker.blogspot.com/2012/10/losing-self.html">here</a>, <a href="http://davidhilfiker.blogspot.com/2012/12/losing-my-life.html">here</a>
and other places), however, a sure path to unhappiness is to hang on to the
self I used to be.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I’m sixty-nine, my memory is shot, I’m confused from
time to time, and I stumble over cracks in the sidewalk.<span style="mso-spacerun: yes;"> </span>And unless I think I’m <i style="mso-bidi-font-style: normal;">supposed to be</i> different, I’m fine with it.<span style="mso-spacerun: yes;"> </span></div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com6tag:blogger.com,1999:blog-6426202096598051070.post-44844749683716430202014-05-06T23:00:00.002-04:002014-05-06T23:05:08.890-04:00Life-Long Teachers<div style="text-align: right;">
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<![endif]-->Washington DC</div>
My wife Marja is an adult educator.<span style="mso-spacerun: yes;"> </span>Almost thirty years ago, she and another
teacher founded <a href="http://www.aohdc.org/">Academy of Hope</a> to provide
high-school-equivalency education for those who had not finished high school.<span style="mso-spacerun: yes;"> </span>They started with four students in the former
guard’s room of a low-income housing building.<span style="mso-spacerun: yes;">
</span>They earned the $50 monthly rent with bake sales.<span style="mso-spacerun: yes;"> </span>Academy of Hope has now expanded into the
largest adult education program in the city.<span style="mso-spacerun: yes;">
</span>Several years after the founding, Marja handed over the administration
of the school so she could devote her time to her real love, one-to-one
teaching and tutoring.<span style="mso-spacerun: yes;"> </span>After her
retirement several years ago, she has continued to volunteer as a tutor at the
school.
<br />
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Marja still gets called back to deliver lectures “from
the founder” to occasional groups.<span style="mso-spacerun: yes;"> </span>She’ll
be speaking at Georgetown University next month.<span style="mso-spacerun: yes;"> </span>Public speaking is not her favorite activity,
and she usually has to go through her own personal hell to prepare a lecture.<span style="mso-spacerun: yes;"> </span>What she comes up with, however, is a
reflection of her own self: straightforward, simple, humble and meaningful.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
She’s plans to speak about the “life-long learner,” a concept
familiar to anyone in adult education.<span style="mso-spacerun: yes;"> </span>We
don’t stop learning just because we’ve completed high school or college or
graduate school.<span style="mso-spacerun: yes;"> </span>Our formal education
can continue indefinitely or pause for a while and then resume.<span style="mso-spacerun: yes;"> </span>At Academy of Hope, adults from their
twenties to eighties continue their formal education.<span style="mso-spacerun: yes;"> </span>For some it’s wanting to be able to help
their children with homework, for others it’s a matter of qualifying for job
advancement, and for still others it’s the simple desire for knowledge.<span style="mso-spacerun: yes;"> </span>For all it’s a source of deep pride.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
But we may not recognize that we are also “life-long
teachers.”<span style="mso-spacerun: yes;"> </span>We teach specific skills to
our children and other adults, too.<span style="mso-spacerun: yes;"> </span>We teach
from our experience.<span style="mso-spacerun: yes;"> </span>We teach from our
presence.<span style="mso-spacerun: yes;"> </span>We teach from wisdom gained
over years.<span style="mso-spacerun: yes;"> </span>Most of us are not aware of
the teaching we do.<span style="mso-spacerun: yes;"> </span>None of us really
knows its long-term impact.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
In this blog, of course, I’m teaching in a more formal
sense about cognitive impairment in order to bring it out of the closet and
into the light.<span style="mso-spacerun: yes;"> </span>I also teach in my
writings, lectures, and seminars.<span style="mso-spacerun: yes;"> </span>But
much of my teaching is less formal, although, perhaps, more important.<span style="mso-spacerun: yes;"> </span>People have told me that just talking openly
about my impairment cuts through some of the stigma attached to the disease.<span style="mso-spacerun: yes;"> </span>When I remain active within my community and
take on whatever responsibilities I can handle, others learn that Alzheimer’s
or any cognitive impairment is a gradual process during much of which the
impaired one can still participate in daily life.<span style="mso-spacerun: yes;"> </span>Others begin to recognize that one can live
with this diagnosis without fear.<span style="mso-spacerun: yes;"> </span><span style="background: yellow;"></span></div>
<div class="NormalParagraph">
<span style="background: yellow;"><br /></span></div>
<div class="NormalParagraph">
In the same way, each of you who reads this blog, or
is cognitively impaired yourself or cares for a person with cognitive
impairment, each of you teaches others about Alzheimer’s or other cognitive
impairment.<span style="mso-spacerun: yes;"> </span>The teachings may be very specific,
for instance, passing on some medical knowledge you’ve gained or the
availability of a website or an Alzheimer’s organization.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Or the teachings may be less well defined.<span style="mso-spacerun: yes;"> </span>The willingness of you who have an impairment
to “out” yourself neutralizes some of the embarrassment and shame that makes
people afraid of the disease.<span style="mso-spacerun: yes;"> </span>Your
participation in the regular activities of daily living gives others a more
realistic picture of what it means to live with Alzheimer’s and reduces some of
the fear.<span style="mso-spacerun: yes;"> </span>Your willingness to talk with
another person who is worried about his or her own cognitive impairment can be
very important.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
The readiness of those of you who are caregivers to
join support groups helps other people who are earlier the journey.<span style="mso-spacerun: yes;"> </span>When you dare to ask others for help, you
teach about community and diminish the anxiety that others may have about the
isolation they fear.<span style="mso-spacerun: yes;"> </span>And when you
include even your moderately demented loved one in activities she or he enjoys,
you teach people to be less afraid.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph" style="text-align: left;">
Those of us who are in the middle of the struggle with
this disease may forget that we have learned a lot that we can teach others.<span style="mso-spacerun: yes;"> </span>We are a relatively small group of people.<span style="mso-spacerun: yes;"> </span>We have wisdom and unique expertise that is
profoundly important in our society.<span style="mso-spacerun: yes;"> </span>In
a culture in which Alzheimer’s is still deeply misunderstood, the education we
provide is a vital piece in the effort to dispel longstanding ignorance and
shame.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com7tag:blogger.com,1999:blog-6426202096598051070.post-74330702379374449412014-04-29T16:14:00.000-04:002014-04-29T16:37:09.194-04:00A Spirituality of Weakness & Vulnerability<div class="NormalParagraph" style="margin: 0in 0in 6pt; text-align: right; text-indent: 0in;">
Washington
DC</div>
<div class="TitleParagraph">
</div>
<div class="NormalParagraph">
I recently visited the Michigan State medical school
to lecture about the “Spirituality of Weakness and Vulnerability.”<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Because of the long train/bus trip, I came in
a day early to be able to rest.<span style="mso-spacerun: yes;"> </span>I also
needed to tweak the lecture I’d prepared.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
First panic: I discovered that my talk was on the
wrong subject … at least different from what I had told the organizer.<span style="mso-spacerun: yes;"> </span>This was actually the second time I’d
forgotten the subject matter.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I wrote back with a proposed outline of my talk.<span style="mso-spacerun: yes;"> </span>He responded that he didn’t see any reference
to spirituality in the text.<span style="mso-spacerun: yes;"> </span>Sure
enough, I’d completely forgotten the general spirituality theme.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>When it came time to
write the lecture, however, I forgot what I’d told him and prepared the lecture
on vulnerability.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Second panic: Re-reading the lecture, I realized it
was terrible: Simplistic, full of platitudes, and boring with no new,
interesting perspective.<span style="mso-spacerun: yes;"> </span>It was a ghost
of what I thought I’d written. <span style="mso-spacerun: yes;"> </span>I hadn’t
articulated what I knew in my spirit: integrating my human brokenness into my
spirituality was essential to being a good doctor.<span style="mso-spacerun: yes;"> </span>So I tried to fix it.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Third panic: About 6 PM I realized I wasn’t improving
the lecture, which comprised four stories describing different sides of
weakness and spirituality. <span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Fourth panic: I choked.<span style="mso-spacerun: yes;"> </span>My anticipation of the next day’s
embarrassment and disappointment overwhelmed me emotionally.<span style="mso-spacerun: yes;"> </span>I could hardly think straight.<span style="mso-spacerun: yes;"> </span>I wasn’t going to be able to do this.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I took a long walk and returned to the hotel, hoping
to continue writing.<span style="mso-spacerun: yes;"> </span>Still nothing!<span style="mso-spacerun: yes;"> </span>In desperation I called Marja.<span style="mso-spacerun: yes;"> </span>She’d read the draft before I had left DC and
said, without much enthusiasm, that it was ok.<span style="mso-spacerun: yes;">
</span>I wasn’t terribly hopeful she was going to be able to help now.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Story, story, story! she reminded me.<span style="mso-spacerun: yes;"> </span>It’s the stories that people remember, not
all the philosophy/psychology explaining it.<span style="mso-spacerun: yes;">
</span>From my previous writing, I knew this to be true, but in this case I
just didn’t trust my naked stories.<span style="mso-spacerun: yes;">
</span>Marja recommended letting the stories speak for themselves, hosever, without
trying to talk <i style="mso-bidi-font-style: normal;">about</i> them too much.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I felt a glimmer of hope and went back to
writing.<span style="mso-spacerun: yes;"> </span>It took me until 4 AM to get it
done.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>The
organizer wasn’t really upset about the subject change … what could he do,
after all?</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;">
</span>I can always tell when my audience is with me.<span style="mso-spacerun: yes;"> </span>They asked lots of good questions, and the
organizer and his group were very appreciative.<span style="mso-spacerun: yes;">
</span>It was a wonderful experience for me.<span style="mso-spacerun: yes;">
</span>(You can read the lecture <a href="http://www.davidhilfiker.com/index.php?option=com_content&view=article&id=108:spirituality-of-weakness&catid=15:lectures-on-spirituality&Itemid=25">here</a>.)</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>Recognizing our
weak and vulnerable sides can bring us closer to our true selves and to our
core values.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
There’s a brief sentence in the New Testament: “Be ye
perfect as your Father is perfect.”<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>And in
each one of us being whole includes being aware of and acknowledging our weakness
and vulnerability.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com11tag:blogger.com,1999:blog-6426202096598051070.post-10668093841188247972014-04-22T18:27:00.000-04:002014-04-22T18:28:49.289-04:00Bus Schedules<div class="FlushParagraph" style="text-align: right;">
Washington
DC</div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>I doubt it,
but I can’t help thinking about it.<span style="mso-spacerun: yes;"> </span>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 <i style="mso-bidi-font-style: normal;">could </i>signal a sudden worsening of my cognitive
decline.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Even without the current fogginess, the impairment seems
to be worsening slightly over the past several months.<span style="mso-spacerun: yes;"> </span>Last week I was trying to make a set of bus
reservations.<span style="mso-spacerun: yes;"> </span>Megabus can certainly make
travel inexpensive, but you can only make reservations online.<span style="mso-spacerun: yes;"> </span>They also make you figure out your own
connections if you have to change buses.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>I had to: </div>
<blockquote class="tr_bq">
<div class="HangingIndent2">
a) figure out my desired arrival time in Albany, </div>
<div class="HangingIndent2">
b) figure out the needed departure time from New York
to Albany, and </div>
<div class="HangingIndent2">
c) then go back and figure out the Washington departure
time to get to New York on time for the Albany bus. <span style="mso-spacerun: yes;"> </span></div>
<div class="HangingIndent2">
d) Then I needed to reverse the process a week later.</div>
</blockquote>
<div class="FlushNoSpace">
It sounds a little complicated when I write it out like
that, but this kind of task has never been difficult for me. </div>
<div class="FlushNoSpace">
<br /></div>
<div class="NormalParagraph">
I just couldn’t do it.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>I should have written it all out on paper, I
suppose, but I got so frustrated that it didn’t even occur to me.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>I finally had to ask Marja for help.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>We both know what the trouble is,
so she was happy to finish the task.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
It frustrates me:</div>
<br />
<ul>
<li>I can’t
tell whether my confusion is really getting worse or it just seems so.<span style="mso-spacerun: yes;"> </span></li>
<li>Almost every time I try to describe something
like the ticket episode above, the other person will say, “Well, I’d get
confused, too.”<span style="mso-spacerun: yes;"> </span>I just nod my head.</li>
<li>And then I remember my intention to let these
kind of useless comparisons go.<span style="mso-spacerun: yes;"> </span>I’m not scared
of the future, so why let myself get worked up about minor changes?</li>
</ul>
<br />
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I could just remain grateful and take each day as it’s
given.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com7tag:blogger.com,1999:blog-6426202096598051070.post-27027129334369190992014-04-08T20:42:00.000-04:002014-04-08T20:43:03.197-04:00Depression and Alzheimer’s <div class="TitleParagraph" style="text-align: right;">
Washington DC</div>
<div class="TitleParagraph">
<br /></div>
<div class="NormalParagraph">
A reader left a comment on a <a href="http://davidhilfiker.blogspot.com/2014/03/better.html">recent post</a> pointing
out that depression is also a relatively common cause of cognitive impairment.<span style="mso-spacerun: yes;"> </span>Because of childhood trauma, he’d also
experienced anxiety and PTSD, and I suspect they belong on the list of potential
causes, too.<span style="mso-spacerun: yes;"> </span>People sometimes ask me if
depression makes a person more susceptible to Alzheimer’s. </div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
The question is important.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
So depression must be on the list of the causes of
mild cognitive impairment.<span style="mso-spacerun: yes;"> </span>If medical
evaluation has ruled out the most obvious of the others, then depression moves
higher in the list of possibilities.<span style="mso-spacerun: yes;"> </span>If
a person is seriously depressed, one can see how the depression might affect her
ability to think well.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Usually depression is obvious, but not always.<span style="mso-spacerun: yes;"> </span>There is (or, at least, was) a stigma around
the disease and people don’t want to acknowledge their inner pain.<span style="mso-spacerun: yes;"> </span>They need to cover it up and mask it with a
smile.<span style="mso-spacerun: yes;"> </span>Even family members may not know
how much the person suffers.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
In some cases the people themselves don’t even know they’re
depressed.<span style="mso-spacerun: yes;"> </span>I’m an example.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I didn’t have the usual symptoms:
sleeping too much, being dysfunctional at work, thinking of suicide, and so
on.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I was mostly miserable.<span style="mso-spacerun: yes;"> </span>I thought my misery was caused by the
difficulties of medical practice or my unreasonable expectations of life.<span style="mso-spacerun: yes;"> </span>The possibility of depression never entered
my mind.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>It can raise
doubts about her own perceptions of her emotional state, especially if she does
have minor bouts of mild depression.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="NormalParagraph">
<br /></div>
<div class="SpaceBefore">
Mild cognitive impairment of no obvious cause is difficult
enough an experience.<span style="mso-spacerun: yes;"> </span>The confusion
around depression can make it worse.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com4tag:blogger.com,1999:blog-6426202096598051070.post-88420811423159741762014-03-31T14:48:00.000-04:002014-05-19T12:08:00.400-04:00My Grandchildren Get It<div class="NormalParagraph" style="margin: 0in 0in 6pt; text-align: right; text-indent: 0in;">
Napa,
CA</div>
<div class="NormalParagraph">
My confusion when trying to perform multi-step tasks
continues.<span style="mso-spacerun: yes;"> </span>It seems a bit worse than it
used to be and certainly more frequent.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
My granddaughter Madeline was mildly ill Friday, so we
canceled our plans for an excursion into San Francisco and she, her brother,
and I spent much of the day inside playing board games, one of which was <i style="mso-bidi-font-style: normal;">Yahtzee</i>, which was new to me.<span style="mso-spacerun: yes;"> </span>If you know poker, however, the rules are not
complicated.<span style="mso-spacerun: yes;"> </span>One of them involved the
conditions under which you could roll the die additional times during your turn,
and the kids tried to explain it to me.<span style="mso-spacerun: yes;">
</span>After a while, it became clear that I wasn’t getting it.<span style="mso-spacerun: yes;"> </span>Madeline, nine years old, looked at me
brightly and said, “That’s okay, grandpa, we can explain them to you as we go
along.”</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Madeline had noticed my inability and frustration but
showed no hint of surprise, condescension 0r impatience.<span style="mso-spacerun: yes;"> </span>She just decided to comfort me: “That’s okay,
grandpa.”<span style="mso-spacerun: yes;"> </span>We proceeded with the game
and, indeed, we had no problems.<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
A similar difficulty occurred in a cooperative game Laurel,
her husband, the kids and I were playing yesterday.<span style="mso-spacerun: yes;"> </span>Each player gets four “actions” in each turn,
but the other players can help figure out which actions should be taken.<span style="mso-spacerun: yes;"> </span>Needless to say, everyone contributes their
ideas one on top of each other, but a consensus usually arises quickly.<span style="mso-spacerun: yes;"> </span>I’d played the game with them before and knew
the rules.<span style="mso-spacerun: yes;"> </span>Nevertheless, I just couldn’t
follow the discussions.<span style="mso-spacerun: yes;"> </span>Once we got
beyond the first or second action, I couldn’t keep them all in my head simultaneously,
nor could I figure out how one suggestion was better than another in helping us
win the game.<span style="mso-spacerun: yes;"> </span>It was like trying to
follow scientists discussing a new and complicated theory; I was in over my
head.<span style="mso-spacerun: yes;"> </span>But this was a conversation the
children easily understood about a family game.<span style="mso-spacerun: yes;">
</span>I could only sit and watch, a new experience for me.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Trying to make simple calculations in my head has
gotten difficult, too.<span style="mso-spacerun: yes;"> </span>How many
tablespoons are in a cup?<span style="mso-spacerun: yes;"> </span>There are
three steps:</div>
<div class="NormalParagraph">
<ol>
<li>I know that there are 15 milliliters [ml] in a tablespoon and 240 ml in
a cup.</li>
<li>I don’t know without a pencil and paper how many times 15 goes into 240,
but I do know that 30 (twice 15) goes into 240 8 times.</li>
<li>Multiply 8 by 2 to get back to tablespoons and you get 16 of them.</li>
</ol>
</div>
It seemed simple to me. On paper it took me perhaps
fifteen seconds.<span style="mso-spacerun: yes;"> </span>But I just couldn’t
keep all three steps in my head at the same time.
<br />
<div class="FlushNoSpace">
<br /></div>
<div class="SpaceBefore">
The impairment is annoying, but, fortunately, I don’t feel
embarrassed or get angry with myself.<span style="mso-spacerun: yes;">
</span>Although <a href="http://davidhilfiker.blogspot.com/2013/10/letting-go-of-alzheimers.html">I
don’t have Alzheimer’s,</a> I know that the chances of my cognitive decline worsening
are high (see <a href="http://davidhilfiker.blogspot.com/2014/02/what-happens-after-mild-cognitive.html">here</a>).<span style="mso-spacerun: yes;"> </span>If I don’t dwell on how much I’ve lost
compared to my past and if I don’t dwell on what’s coming in the future, things
are just fine.<span style="mso-spacerun: yes;"> </span></div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph">
Most religions seem to recognize the same truth, for
instance,<span style="mso-spacerun: yes;"> </span></div>
<blockquote class="tr_bq">
<div class="QuoteParagraph">
<span class="woj">Do not worry about tomorrow, for
tomorrow will worry about itself. Each day has enough trouble of its own.</span><span style="mso-spacerun: yes;"> </span>Matthew 6:34</div>
</blockquote>
<div class="SpaceBefore">
I’ve always known this intellectually, but my intellectual
impairment seems to have inscribed it in my heart, too.<span style="mso-spacerun: yes;"> </span></div>
<div class="SpaceBefore">
<br /></div>
<div class="NormalParagraph">
It’s a wonderful gift.</div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com9tag:blogger.com,1999:blog-6426202096598051070.post-22162986690485921232014-03-25T14:42:00.000-04:002014-05-19T11:59:31.333-04:00How Did I Do That?<div class="NormalParagraph" style="margin: 0in 0in 6pt; text-align: right; text-indent: 0in;">
<span style="mso-tab-count: 1;"></span>Napa
CA</div>
I’m visiting my daughter Laurel and her family in Napa
CA.<span style="mso-spacerun: yes;"> </span>I’ve been doing this regularly for
the past several years during the grandchildren’s spring vacation so that
they’re able to stay at home without Laurel having to make special
arrangements.<span style="mso-spacerun: yes;"> </span>At 9 and 11 years old,
Madeline and Otto are getting to the place where they need less babysitting
than they do a simple adult presence.<span style="mso-spacerun: yes;"> </span>As
I write, they’re quietly entertaining themselves as they usually do in the
morning.<span style="mso-spacerun: yes;"> </span>In the afternoon, we’ll ride
our bikes downtown to visit the library.<span style="mso-spacerun: yes;">
</span>Other days we’ll go for a hike, go bowling, visit a museum in San
Francisco, or stay home and play board games.<span style="mso-spacerun: yes;">
</span>I have never enjoyed younger children, but I certainly seem to be
enjoying my grandchildren as they grow older.
<br />
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Laurel said last night that she hadn’t noticed that my
cognitive impairment causing any problems, and, as she said, “You know I’d tell
you if I did.”<span style="mso-spacerun: yes;"> </span></div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
But I’ve noticed it.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Otto has a soccer game this Saturday, and I told him
I’d be sorry to miss it since I’m starting my three-day return train trip on
Friday.<span style="mso-spacerun: yes;"> </span>Laurel interrupted and said she
thought I was leaving on Sunday.<span style="mso-spacerun: yes;"> </span>Knowing
better than to trust my memory, I checked my calendar and, sure enough, she was
right.<span style="mso-spacerun: yes;"> </span>I had reserved my train tickets
to leave Sunday morning and arrive in Washington next Wednesday.<span style="mso-spacerun: yes;"> </span>But, somehow, for the last several weeks,
I’ve had it in my mind (and have been telling Marja and my friends) that I’ll
get home on Monday.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
Because weekends are special family times at Laurel’s,
however, I always try to stay in Napa through most of the second weekend while
I’m here.<span style="mso-spacerun: yes;"> </span>So I would never have planned
to leave on Friday without exceptionally extenuating circumstances; I was
bothered by having to leave on Saturday but I never thought it through enough
to notice my mistake.<span style="mso-spacerun: yes;"> </span>It just didn’t occur
to me.<span style="mso-spacerun: yes;"> </span>Furthermore, I have no idea why I
hadn’t noticed my error since the correct schedule is plainly written in my
calendar on both my phone and computer and I check them at least daily.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
To make matters worse, I had scheduled a lecture to a
well-established community group for next Wednesday morning.<span style="mso-spacerun: yes;"> </span>But the train isn’t scheduled to arrive in
Washington until Wednesday afternoon. <span style="mso-spacerun: yes;"> </span>That
meeting, too, was on my calendar and must have been there when I made my train
reservations.<span style="mso-spacerun: yes;"> </span>I have no idea why I
didn’t see the conflict.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
And to make matters even worse, last Friday when I
became of aware of all of this, I wrote an email to the sponsor of the event
canceling my presentation without really thinking through whether I had any
other options.<span style="mso-spacerun: yes;"> </span>I have previously committed
myself to a smaller environmental foot print when I travel so I haven’t flown
in years, but I can certainly bend my principles and fly home in time for to
offer the lecture.<span style="mso-spacerun: yes;"> </span>Fortunately, my email
to the sponsor didn’t get through and I was able to make new travel
arrangements without panicking her.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
These are the sorts of little personal indignities
that come with my cognitive impairment.<span style="mso-spacerun: yes;"> </span>Friends
tell me that they have memory lapses like this all the time; it’s normal for
them.<span style="mso-spacerun: yes;"> </span>But it wasn’t normal for me before
this impairment.<span style="mso-spacerun: yes;"> </span>On the other hand, the
major impact of my lapses is that usually, they only embarrass me.<span style="mso-spacerun: yes;"> </span>It’s not a big deal.<span style="mso-spacerun: yes;"> </span>I can live with it. </div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com4tag:blogger.com,1999:blog-6426202096598051070.post-78388577976065121442014-03-17T12:52:00.000-04:002014-03-17T12:54:37.478-04:00Better?<div class="HeadingParagraph" style="text-align: right;">
<span style="font-weight: normal;">Washington
DC</span></div>
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</xml><![endif]-->Ever since I announced that I don’t have Alzheimer’s
but some other form of cognitive decline, I’ve had friends and acquaintances
say something like: “I heard the good news!<span style="mso-spacerun: yes;">
</span>I’m so happy that you’re better.”<span style="mso-spacerun: yes;">
</span>In one way, they’re right, of course.<span style="mso-spacerun: yes;">
</span>Having a stable cognitive decline of uncertain cause is better than
having inevitably progressive Alzheimer’s disease.<span style="mso-spacerun: yes;"> </span>If “better” means “back to normal,” however,
then I’m not better.<span style="mso-spacerun: yes;"> </span>I have by no means
regained my cognitive losses.<span style="mso-spacerun: yes;"> </span><br />
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
I notice my impairment in three areas: difficulty in
finding the right word, forgetfulness, and occasional confusion.<span style="mso-spacerun: yes;"> </span>The <b style="mso-bidi-font-weight: normal;">word-finding</b>
problem probably annoys me the most.<span style="mso-spacerun: yes;"> </span>I
was an intellectual.<span style="mso-spacerun: yes;"> </span>I still do some
teaching.<span style="mso-spacerun: yes;"> </span>For me, communicating has
always meant finding the precise word to express myself.<span style="mso-spacerun: yes;"> </span>If I want to tell you I’m feeling
“frustrated,” synonyms won’t do it.<span style="mso-spacerun: yes;"> </span>I
don’t mean I’m “irritated,” or “upset” or “disturbed.”<span style="mso-spacerun: yes;"> </span>I mean I’m <i style="mso-bidi-font-style: normal;">frustrated</i>.</div>
<div class="NormalParagraph">
<br /></div>
<div class="FlushParagraph">
<b style="mso-bidi-font-weight: normal;">Forgetfulness</b>:
I can’t count on my memory anymore.<span style="mso-spacerun: yes;"> </span></div>
<ul>
<li> Have we met before?<span style="mso-spacerun: yes;">
</span>It’s my first question on meeting a new person in church.<span style="mso-spacerun: yes;"> </span>I just can’t remember.<span style="mso-spacerun: yes;"> </span>So I ask.</li>
<li>What did we decide at the last meeting?<span style="mso-spacerun: yes;"> </span>I have no idea.<span style="mso-spacerun: yes;"> </span>If I hadn’t written it down or reviewed it
before today’s meeting, it’s disappeared.</li>
<li>What did I agree to do before Sunday?<span style="mso-spacerun: yes;"> </span>I don’t remember agreeing to do
anything.<span style="mso-spacerun: yes;"> </span>Everything has to be written
down and reviewed.</li>
<li>Without my calendar I have no idea what my week looks
like.</li>
</ul>
<div class="FlushParagraph">
It’s the intermittent <b style="mso-bidi-font-weight: normal;">confusion</b>, however, that’s the most bothersome.<span style="mso-spacerun: yes;"> </span></div>
<ul>
<li>I was downtown earlier this week and got off the bus to
walk the four blocks to my doctors office.<span style="mso-spacerun: yes;">
</span>I wasn’t lost; I knew exactly where I was.<span style="mso-spacerun: yes;"> </span>I knew where the office was.<span style="mso-spacerun: yes;"> </span>DC is laid out in a grid, so there’s no
confusion about how the streets go.<span style="mso-spacerun: yes;"> </span>I
ordinarily have a good sense of direction.<span style="mso-spacerun: yes;">
</span>This time, however, I got completely turned around and got to the office
only by guessing.<span style="mso-spacerun: yes;"></span></li>
<li>Several days ago I was helping a friend.<span style="mso-spacerun: yes;"> </span>She was working 21 hours a week and getting
paid $900 a month.<span style="mso-spacerun: yes;"> </span>What was her hourly
wage?<span style="mso-spacerun: yes;"> </span>This is not college calculus.<span style="mso-spacerun: yes;"> </span>She’s working three hours a day for thirty
days in the month, which is $10 an hour.<span style="mso-spacerun: yes;">
</span>But I got into multiplying 21 hours by four weeks (84 hours per four
weeks) and then trying to estimate the fraction of the fifth week in every
month; soon I had to get my pencil out and even then I got confused.</li>
</ul>
<div class="NormalParagraph">
None of these is a big deal.<span style="mso-spacerun: yes;"> </span>My impairment isn’t getting worse.<span style="mso-spacerun: yes;"> </span>I’m enjoying myself as much as I ever have.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
But I don’t want people to think that I’m cured.<span style="mso-spacerun: yes;"> </span>I can’t quite explain that, but it has
something to do with wanting an honest relationship between us.<span style="mso-spacerun: yes;"> </span>Whatever.<span style="mso-spacerun: yes;">
</span>In a longer conversation with anyone who’s actually interested, of
course, it’s not difficult to describe the situation more fully.<span style="mso-spacerun: yes;"> </span>What bothers me is how to respond to someone
in the elevator (see <a href="http://davidhilfiker.blogspot.com/2013/11/the-elevator-version.html">here</a>
and <a href="http://davidhilfiker.blogspot.com/2014/02/so-now-nothing.html">here</a>)
or when meeting each other at the checkout counter.<span style="mso-spacerun: yes;"> </span>I think the answer is to suck it up.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
It occurs to me that my situation is not that
different from many older people with arthritis in their knees, bladder
problems, generalized weakness, or widespread aches and pains.<span style="mso-spacerun: yes;"> </span>Most of the time, when I ask those older
folks how they are, I don’t really want to know! <span style="mso-spacerun: yes;"> </span>I’m not interested in hearing their “organ
recital.”<span style="mso-spacerun: yes;"> </span>I want to express my happiness
with their recent successful surgery or hospital discharge or express my
concern for them.<span style="mso-spacerun: yes;"> </span>What I want from them
is a smile and “Oh, I’m doing as well as can be expected.” Or “It’s going
okay.”<span style="mso-spacerun: yes;"> </span>“Or, yes, I’m happy the surgery
went as well as it did.”<span style="mso-spacerun: yes;"> </span>If they’re
smart, those aching older people will make very sure I want to know before they
tell me the truth.</div>
<div class="NormalParagraph">
<br /></div>
<div class="NormalParagraph">
It’s no different for me.<span style="mso-spacerun: yes;"> </span>Usually people want to hear I’m okay, that my
life is going well, that I’m relieved about not having Alzheimer’s.<span style="mso-spacerun: yes;"> </span>They would prefer, at least for the time
being, not to enter into my pain.<span style="mso-spacerun: yes;"> </span>I can
deal with it.<span style="mso-spacerun: yes;"> </span>Mostly. </div>
David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.com13