[Dialogue] Who Could Have Known . . .?

Gordon Harper via Dialogue dialogue at lists.wedgeblade.net
Sun Oct 25 16:53:27 PDT 2015

My Troublesome Colleagues --

I certainly couldn’t have anticipated the cascade of responses that my
Brief Collegium note turns out to have precipitated.  You have overwhelmed
me with all your well wishes, memories, reflections, shared experiences,
suggestions, quotations, music, art--such a cornucopia, an effulgence of
gifts that could come only from you.

My first reflection was that what you’d done had left me with a crushing
burden of guilt.  I felt that each of your thoughtful notes fully
deserved--and has failed to receive--an equally personal word of
appreciation from me.  The severe diminution of energy that I’m living with
simply made that impossible.  This anemic state is the primary physical
effect I experience from my form of leukemia, the result of  inadequate
production of red blood cells by my bone marrow.  About all the time I
could muster for working at my computer was taken by just reading your
comments and doing triage on the numerous other message headers.

This note, therefore, began as an excuse for that extended dereliction on
my part and an attempt to express the heartfelt gratitude I have for each
one of your responses. Each has been such a rich gift.  I truly experience
being enclosed by your circle of love and support, as well as by that of
the cosmos itself. I found myself thinking that it was a good thing how
frequently  in our previous life we rehearsed that accountability had
always to be followed by absolution.  (Of course I also recall that it had
to be pronounced by someone other than yourself.)

In the course of my writing this, however, I’ve had a second reflection.  I
now recognize that I quite misconstrued the actual nature of your
responses. They are of an entirely different order than personal notes
expecting individual replies.  Indeed, they are much more akin to the word
we addressed to one another on the occasion of our birthday celebrations.
We were expected, you will recall, to simply stand before the community and
receive that word--no thank you, corrections or rebuttal permitted--we just
had to allow our lives to be addressed in this way as an important part of
celebrating our unique being.  (Now, how’s that for creatively offloading
the aforementioned burden of guilt?!)


A brief update on our situation at this moment.  By now, Roxana and I have
handled the end of life paperwork and had good conversations with our kids
over the week they spent with us, in which they got to ask many of the
questions they’d always wanted time to explore.  Some of this was video
recorded for the grandchildren as well.

In terms of the dance that this rare and unfamiliar form of  leukemia
(CMML) and I are doing, things seem to have leveled out a bit, at least for
the moment.  I’ve now shed about thirty pounds, am just below what the
statisticians calculate to be my ideal weight and am approaching where I
tipped the scale upon returning from India for Joe’s funeral, while still
recovering from my bout with hepatitis.  The only form of treatment we’re
doing is the red blood transfusions (two so far), which seem to give my
tired blood a bit of a boost.  My doctor and I are seeking to learn how
long we can extend the time between these (currently appears to be five or
six weeks), since at some point we know they will cease to be effective.

We’re not trying to fight the disease, rather learn from it and work with
it.  I’ve come to call this period of time since the diagnosis,
Extraordinary Time (I think we used that term, in distinction to Ordinary
Time, but I can no longer recall in what context).  I’m particularly
grateful for the work we did to explore and experiment with shifting our
living patterns and time designs, discovering how fluid time can be.  This
has helped me to shape my days and nights into modules of roughly three
hours each (shades of the Canonical Hours).

When I finish a rest and restoration module (generally about two hours), I
have a bit over three hours to use as creatively as possible before I need
to go down again.  These social modules are the occasions when Roxana and I
schedule routine tasks, clinic visits, mealtimes, checking email, drop-ins
from our local friends and the somewhat rare outside excursion that we
hazard to places like church or the supermarket.  At the start of one of
these modules,I experience my highest level of energy; approaching the end
of the three hours, my tank has run dry and I am visibly dragging.

Surprising how natural and manageable this pattern has become.  We keep our
friends’ visits to under an hour, but during that time I am relatively
perky, even moderately civil with our guests.  I have trouble sleeping
through the night, so somewhere between  2 and 5 am I regularly get up and
do my daily stretch exercises, read, meditate and listen to classical music.

I’m not in pain, beyond the normal aches and twitches for my age.  Roxana
and I have explored how our health care insurance handles palliative care,
hospice service and even death with dignity (legal in WA state), for
possible future reference.  We suspect that hospice is the one we’ll draw
on when this chronic state leukemia makes its anticipated transition to the
acute form.

Roxana continues to be my caretaker nonpareil.  In addition to ensuring
that I make and get to clinic appointments, accommodating my strange time
designs and catering to some equally strange requests for foods that I come
up with, she facilitates the phone calls with friends wanting updates or
opportunities to come by.  She somehow manages to find times for these that
work for me and keeps my calendar current.  When family members or close
friends ask to stay with us (our living room hideabed has been surprisingly
in use these past weeks), she plays Wayside Inn host to our guests with a
flourish.  Our Order community here in the Northwest also continues to be
most supportive, even providing the meals when our kids were here with us.

Vanity, as we know, never dies.  I’ve indulged myself in a striking
rosewood cane, which I can use when I go out, either as a sophisticated *New
Yorker* walking stick (when I’m at peak energy) or as something to help
keep my shaky balance when the tank is drying up.  To facilitate streaming
my favorite classical music station (WFMT Chicago, of course), you will
find me sporting a new BOSE wireless headphone that provides exceptional
sound reproduction.  Last week, our 27 inch analog TV went to Goodwill, and
a 40 inch flat screen replacement appeared in its place. Finally, I do
always try to comb my hair and beard when I’m going to be on a Skype call
with one of you.

Even with limited mobility, it seems I’m still capable of causing a little
trouble.  Just recently, Bill and Sheila Westre dropped in, and Bill asked
if I could help him with some technical support for a proposed direct
action to wean one of our providers of electrical power here in the
Northwest off its use of coal generated power.  I was able to connect him
with one of my most knowledgeable Occupy Movement colleagues, who just
happens to have written the book on that particular technology.  (So far,
no word of any arrests in the Seattle paper.)


I hope this provides a vignette of where things stand at present.  We’re
trying to take each day as a special gift, I’m practicing mindfulness of
the given moment and rendering up each day to the Mystery at its

Roxana and I deeply appreciate all that you’ve done to make this
Extraordinary Time the blessing it is for both of us --

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