2010 May 16 - 20
Created by Tom on 08/05/2010
Thursday, May 20, 2010
On Sunday and Monday I was starting to really recover from my flu, got a bit of work done, cleaned up my room, did laundry. I was and am still trying to keep some distance from my usual work momentum, to maintain space for changes that seem to want to happen in my life. Most significantly, I am not attending a summit meeting about Dynamic Facilitation (a particularly powerful method for facilitating breakthroughs), a gathering I have pushed for for at least 3 years, that is being held this weekend in Port Townsend. Those folks who are attending will undoubtedly do a fabulous job, and Karen may very well need me here.
In the last few days Karen and I had a wild ride. Our old friend Lily Ventura and her husband Howard Danforth (who is an emergency room physician) visited from Massachusetts on Tuesday. Lily knows a lot of my local friends through a Dynamic Facilitation workshop we all attended in 2000, so we gathered at a local innovative pizza joint for dinner. Afterwards, at Karen's request, we brought her a few slices of the special pizza to try out. Lily, Howard and I watched as Karen chewed and tasted with tremendous relish and total focus, although she had to spit out most of what she chewed, trying not to swallow it so as not to mess up her digestion and her stomach tube. After a delightful evening of conversation we all parted company. The next morning Karen called me urgently, feeling terrible -- as, apparently, she'd felt also at 2 am the night before -- probably as a result of whatever elements of the pizza she did swallow.
I taxied across town to her nursing home and spent the day helping her try different drugs and juices, "milking" her stomach tube, cuddling with her and massaging her feet, etc. By evening she felt better and we watched "Breakfast at Tiffany's" before midnight. A number of people had told Karen she was like Audrey Hepburn in that movie, although we were both totally puzzled what possible resemblance they saw (as well as why people thought it was such a great movie!). We both slept well last night but we found Karen had been given more morphine before bedtime than we'd thought, so she was sleepier during the day than we'd hoped. Once again she didn't get a chance to work on her story with Les. However, we did find out from the hospice nurse today that a hospice volunteer does video interviews with hospice patients to create video stories of their lives and lessons for their families -- Perfect!!
What Karen did do today (while I was out doing errands for her, me, and the co-op) was to spend more than 5 hours on the phone with her good friend Anna Pendall. Karen and Anna had been roommates before Karen joined the Great Peace March, and they had worked with Joanna Macy, Fran Peavey and others in the early '80s to create Interhelp, a grassroots movement to help people move from despair about nuclear war to action. Anna had flown up from the Bay Area six weeks ago on a moment's notice to support Karen and me during the first week of Karen's crisis in April, when Karen was having intense gastric distress but we didn't know what was causing it. Anna was here for the tests Karen got, the oncology appointment where we were warned of an imminent bowel blockage, the emergency room visit that confirmed it had already happened, and then Karen's hospitalization. Anna only left when she was replaced by Les that Friday. I only started reporting on what was happening with Karen after Anna left and in the mounting chaos I failed to tell you all what a tremendous help she had been. And as Karen became increasing occupied with her symptoms and decisions (and events) around dying or not, she had less and less attention to give to family and friends, and engagements with them became increasingly unpredictable. It is fully understandable that some people might feel unseen and neglected, including people who I failed to add to this list until weeks after I started doing updates (I keep realizing more people who should be added; it is very embarrassing). People fall through the cracks of our life now just as vitally needed actions do; it is simply part of overwhelm, and of our efforts to recover from overwhelm; we just don't have it all together). All we can do is hope that our friends realize just how chaotic, stressed, and strange this time has been and not take our neglect too personally. We ARE tremendously grateful not only for the direct help we've received, but for all the expressions of care and even for the simple patience people have with the sloppiness of our interactions, a patience we experience only through the lack of complaints. There are so many ways to hold us, and we are increasingly aware of them all...
In general, Karen is doing fairly well, still figuring out how to limit her drugs so she can be more alert during the day (we'll probably do an experiment tomorrow with Marinol, the legal THC derivative of marijuana for nausea, since it doesn't have so much of the sleepy side effect), with many ups and downs. I'm temporarily doing fulltime support again until we can find a "new normal" for her. As usual, we don't know what that means or what will happen.
Blessings on the Journey.