Dear Gordon, Thank you for your inestimable gift of being such a wordsmith. We are walking with you, and salute you, as you and Roxana and your dear family- offer all of us reflective signposts, and hope -along the Way. Journey on, moment by precious moment. From your Aussie colleagues, Isobel and Jim and family. On 26/10/2015, at 10:53 AM, Gordon Harper via OE <oe@lists.wedgeblade.net> wrote:
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?!)
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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.)
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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 conclusion.
Roxana and I deeply appreciate all that you’ve done to make this Extraordinary Time the blessing it is for both of us --
Gordon
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