Sunday morning I noticed when I got up to pee around 5 am that I was developing a headache. While never any fun, headaches are fortunately rare for me. I made sure to drink a glass of water before returning to bed and figured that would take care of it. (The most common etiology for headaches, at least for me, is insufficient hydration.)
Unfortunately, that simple remedy didn't work and the headache gained in strength as the day arrived. As there was no trauma I could trace it to (I hadn't bumped my head into a door jamb, for instance) it was baffling to figure out what was going on, and what to do about it. At 9 am I started turning to my optional pharmacology. First I tried extra-strength Tylenol, but it didn't make a dent. At noon I took a muscle relaxant (Robaxin) that has been reliably effective in providing relief from back pain, but it also was ineffective up against my headache. Now what?
I tried going back to bed and that helped insofar as reduced movement equated to less pain, but my neck was getting stiff from holding my head so still. The whole experience was debilitating and I was losing ground on three fronts:
a) I was tired of the pain and had no clear pathway to relief. I get headaches so rarely that I didn't have much personal experience to guide my expectations.
b) In addition to the acute pain, after half a day of it there was also an accumulation of pain and the weary prospect of more to come. I didn't know how I was going to sleep that night.
c) I'm a cancer patient who is undergoing chemotherapy that involves my regular consumption of heavy-duty drugs, some of which can have serious, if unintended, side effects. Was that in play? Did the headache signal something even more serious related to my cancer?
As you can see, I had a lot of unpleasant thoughts dancing through my head, such that after 16 hours of coping with a headache that still hadn't crested that I was ready to ask for help. Fortunately, the oncology team that I work with in Duluth is on-call 24/7, and there was a doctor available to talk with me right away, even at 9 pm on a holiday weekend. My guy was worried about the possibility of bleeding in the brain (unlikely, but possible) and recommended a trip to the ER, which we dutifully took in the failing light (the sun sets late here in the North Country as we get close to Summer Solstice).
In situations like this the main strategy of emergency care medicine is to secure relief from pain and to discover, or rule out, dire causes. So ER docs are taught to look for boogey-men and then test for their presence—hopefully to eliminate them as being in play, but to respond promptly to them if they are. In my case, the docs were principally worried about bleeding in the brain, so that meant a CT scan of my head, followed by interpreting the results. Unfortunately, it took us until 1:30 am to get that far, and we still weren't done.
It happens (I didn't know this until yesterday) that CT scans are notorious for not giving a clear read on what's happening at the back of the head—which was the very spot in question. Ugh. That meant that the negative result was not conclusive, so the docs huddled and decided a lumbar puncture was called for, to see if there was blood in my spinal fluid. Double ugh. More fun yet.
Though the puncture only took five minutes to perform, we didn't get it accomplished and the results examined until 4:30 am. Triple ugh. The end result of all this, I'm pleased to say, was that there was no indication of blood in my brain; I just had a garden variety headache of unknown origin. The upshot of this was that I could go home and enjoy the rest of my night. Whew!
Susan and I wearily drove home, just as dawn was beginning to lighten the Eastern sky.
It was a Memorial Day to remember. We were most grateful to be able to sleep in until 10 am.
Tuesday, May 31, 2016
Sunday morning I noticed when I got up to pee around 5 am that I was developing a headache. While never any fun, headaches are fortunately rare for me. I made sure to drink a glass of water before returning to bed and figured that would take care of it. (The most common etiology for headaches, at least for me, is insufficient hydration.)
Saturday, May 28, 2016
I just enjoyed a three-day visit with Jibran (Ma'ikwe's 19 year-old son) who swung by Duluth at the end of his sophomore year at Shimer College in Chicago before embarking on his summer adventures at Dancing Rabbit. I'm was touched.
In fact, Jibran's visit underscores a precious thing that Ma'ikwe managed in the context of our dissolved marriage. While there was plenty of awkwardness around her decision to end our intimate relationship 16 months ago, she has been scrupulous about distinguishing between what she and I had going from the relationships I had developed with various members of her family. That is, even as she got clear about not wanting to continue with me as her partner, she did not ask her family to cut ties with me. Instead, she left that up to each person to sort for themselves.
To be sure, there is no rule book for this and it plays out in a wide variety of ways when partners separate. In this instance I am pleased to report that, with care, a number of us have been able to find our way into ongoing communication and connection even as Ma'ikwe and I have been diverging. As far as I'm concerned the credit for that goes to both Ma'ikwe and to her family.
I don't try to process what happened with Ma'ikwe when I'm communicating with her family, and I don't ask her family to take sides. We just stay in touch and try to build on whatever good thing we had already started. It is directly between that person and me, and will grow on the strength of its own vitality, or wither if the juice dries up—just like any other relationship.
The reason I am focusing on this is because it's relatively rare, and because it can be a building block of world peace. It is so easy to take sides and to fall into the trap of conflating the condemnation of other as an expression of love and support for a dear one (the fallacy of life as a zero-sum game). Yet the Ludwig clan is not doing that and my spirits are buoyed by their courage and clarity.
It is not so much because my current connections with her mother, father, stepmother, and son are so dynamic (there are moments when they are and moments when they aren't) as it is simply because they are possible and there is no need to create an even greater rent in the fabric of my life so that Ma'ikwe can pass safely through. That hole was big enough and we can all move on.
This is precious because there is so much about intimacy that can enrich the relationships it touches and this need not be lost as collateral damage when the primary intimacy shifts. In the instance of Jibran, I have lived with him for half of his life (Ma'ikwe and I got together as a couple in Oct 2005, when Jibran was only eight). I was part of his overnight ninth birthday celebration the following spring when we went to White Sands National Monument near Alamogordo in southern NM, and frolicked at Faywood Hot Springs for teepee camping that evening. Because of how Ma'ikwe and I are managing our separation, Jibran and I can still cherish those memories and they do not need to be excised, much less exorcised.
When I was in Salt Lake City last week, by wild happenstance Ali (Ma'ikwe's stepmom) was also in town doing some genealogical research at the vast Mormon archives. She and Jim (Ma'ikwe's dad) live in St Thomas ON and it was just a fluke that I learned from Jim that Ali would be visiting the capital of Utah at the same time I was. While it did not work out for us to get together (I was there for too short a stay and needed to protect my rest so that I could protect my energy for the workshop that was my raison d'etre for being in town), we're setting up a let's-catch-up phone call next week (with Jim, too) and I'm looking forward to it.
Since I was diagnosed with cancer in late January I have received a number of encouraging notes from both Ma'ikwe and Kay (her mother) who have been following the journey of my health challenges and treatment.
Over the course of our three days together, Jibran and I had a chance to talk about many things. After two years of college, he intends to take time off next year to better explore intentional community as a lifestyle option. This coming year, for the first time, he will be there by choice, rather than because that's where his mother lives. As a Millennial trying to figure out his future, he's taking a pause from running up college debt to contemplate what future makes the most sense.
Jibran caught up on sleep, read a bunch, went for walks with Susan every day, played a handful of board games with Susan and me, and helped me sort through some boxes of my stuff that were dropped off in Susan's garage a fortnight ago (after having been stored for the last year in the loft at Moon Lodge that used to be his bedroom at Dancing Rabbit).
It was a delight to see him.
Tuesday, May 24, 2016
This past week I journeyed to Salt Lake City. The cornerstone of this junket was conducting a four-hour workshop on how to manage difficult conversations about aging in community. It was a prime example of the kind of thing I used to do before getting my cancer diagnosis in late January and undergoing chemotherapy.
Since then I've come a long way in adjusting to my new life and working with my oncologists to figure out the best protocol for winning my battle with multiple myeloma. So far, knock on wood, I've been bouncing back well. I have good doctors, a strong will, an incredibly supportive partner, and the benefit of many others with my diagnosis who have already successfully walked the path I'm on. Thus, though I'm seriously ill, I have chances.
An integral part of the approach that Susan and I have developed is that I keep reaching for "normal." No sooner do I take one step then I reach for the next. Let me give you an example.
When I got out of the hospital Feb 19, I was either in a wheelchair or hobbling around with the aid of a walker. While in a rehab center Feb 26-March 19 one of my main goals was increasing my mobility, which translated into exercising with the walker and working on flexibility. When I graduated from there and went home, I stopped using the walker. A month later, circa April 15, I stopped using the wheelchair. While I haven't been walking fast, and my stamina still needs a lot of improvement, I get around pretty good.
To be sure, I was happy to take advantage of wheelchairs to negotiate all three airports I was in last Wed en route to Salt Lake City, thus avoiding the potential that my stamina would be exhausted just changing planes, but I've come a long way since Feb 19.
At home the bedroom and bathroom are on the the second floor, but I get up every morning and walk downstairs for all meals, and my periodic bouts at my laptop. In the last month I've been walking up and down stairs by working equally with both knees—essentially rehabbing the right one that I have been favoring since hyper-extending it in a bowling accident in 2012. The next step is to try to go for regular walks around the block. Speed is not the goal; just getting around safely (not falling) and working my legs, gradually extending my stamina.
The kitchen is another frontier for me. Instead of relying on Susan to do all the meal prep and cleanup, I am slowly working my way more into the rhythm and rotation of the day. It's important for my partnership with Susan that I keep reaching for the middle ground and am mindful of the gap between where I am and where we want me to be.
This approach makes it possible to notice and celebrate small increments, which helps with overall morale.
I told you all that to help frame our trip to Salt Lake City, as it was another step in my recovery.
While the arrival of cancer in my life has helped me see that it's time for an adjustment in how I do my life (less pressing on the gas and more looking out the window and appreciating all the amazing connections in my life), I fully intend to return to some level of engagement in the world of cooperative group dynamics. So this was a stepping stone in that recovery. Next month I have a green light to extend myself a bit further: conducting a three-day facilitation training with Ma'ikwe Ludwig in Portland OR.
So what exactly did I learn last week about how far I've come and what's ahead?
o I bounced back well overnight (by going to bed early) after running out of gas before the end of the day. On the first day out that was due to the rigors of plane travel; on the second day by visiting with friends and family in the morning, followed by full-on teaching in the afternoon.
o I slept OK on the train in a roomette. Our journey from Salt Lake City to Chicago was 36 hours long, including two nights. The key, I think, was being able to lie down, when I let all my vertebrae extend and relax. Less clear is how I'll experience coach travel on the train, where I'll be sleeping in a 45-degree reclined position.
o My back did all right on an overnight bus ride, which is comparable to an all-night train ride in coach, though more cramped. While I didn't sleep that well on the bus, neither was I in much pain. Hooray. That's a big deal.
o It was smart to get wheelchair support to negotiate airports (much less walking—which I can manage in small chunks, but which draws down on my energy reserves).
o I benefited greatly from Susan's help with managing baggage. There were a number of times where I only carried one piece of light luggage, while she handled our suitcase, her knapsack, purse, and my tote bag. I have to think carefully through what I can realistically manage on my own when going to Portland. For example, I ordinarily travel with my own food, but that's heavy. For this next trip I'll eat in the dining car. It's harder on my wallet, but much better for my back.
o There were a number of times when I felt nauseous. Though I never threw up, I was close at times and I'm not sure why. Access to Zofran (an anti-nausea drug) helped keep me from loosing my cookies. But why was I so queasy? It's been a relatively rare occurrence since my initial hospitalization in late January, but if it's associated with travel that's not good.
o Meals worked better when I kept my portions small and ate more frequently. It's not pleasant feeling stuffed. (From a nadir of 150 lb I've now eased back up to 160 lbs the past three months and my doctor is pleased—I'll need that extra weight to sustain me through the stem-cell transplant.)
o Reaching out and lifting a light object with one hand (say my laptop) no longer tweaks the muscles in my rib cage. While this is a modest gain, it makes everyday life much easier.
o I'm still not working full days. I take time off to rest between sessions at my laptop. This routine is working well, yet it's dangerous to work full bore, where I may no have enough recovery time. The metaphor here is that I can reach the same peak output I could before the cancer, but my battery won't (yet) hold the same charge. That means I need to make adjustments in how I handle the pace at facilitation training weekends. I have to protect breaks to recharge.
It was wonderful, having five days in a row with Susan where we didn't need to juggle her work schedule, foreshadowing a lot more travel that we would like to do together.
One of the highlights was an impromptu dinner at The Parthenon restaurant on Halsted in Chicago between our train from Salt Lake and our bus to St Paul. The lamb with artichokes was divine (a lamb shank slowly stewed in lemon dill sauce, garnished with artichoke bottoms). Yum! Maybe next time I can also enjoy a glass of retsina with the olives and tzatziki sauce. Opa!
Saturday, May 21, 2016
and I are rumbling east on train #6, enjoying springtime in the Rockies.
The alpine meadows are unusually green this May, either through
above-average snow pack, a wet spring, or both. In any event, I've never
seen the high-altitude desert so lush. The water levels are high,
wildflowers are abundant, and green is dominating over brown on the
Though Amtrak and I are old friends, Susan had not been on an intercity train since 1967. I promised her a day to ourselves accompanied by drop-dead gorgeous scenery, and Mother Nature has come through in spades.
The day didn't start so auspiciously. We were in Salt Lake City yesterday, where I delivered a pre-conference workshop on Community Conversations about Aging: What You Need to Talk about and How at a regional cohousing event that continues for the next two days. It was my first time on stage since receiving my cancer diagnosis in January, and it was gratifying to be able to husband my energy and rise to the occasion. It was also the first time Susan had seen me work and it meant a lot to me that she was able to experience first hand what I derive so much satisfaction out of doing.
In any event, I was pretty tired after the four-hour workshop. Although I've regained a considerable amount of functionality after undergoing the initial rounds of chemotherapy (and being completely discombobulated), my stamina is still in question. I need to protect time to recharge my battery between bursts (read sleep), and to recover from travel before stepping on stage.
Fortunately, sleep accomplishes restorative wonders, and I was able to bounce back both Thursday (after traveling half a day Wed to get from Minneapolis to Salt Lake City) and Friday (after conducting the workshop nonstop for four hours). This is important data as I ease my way forward toward greater strength. On the one hand, I want to stretch my limit as a stepping stone en route to increased capacity; on the other, it's important that no single step be so far that I experience a setback. So far, I've done well by listening closely to my body. If the pain becomes noticeable, I stop and take a break. By letting that be my mantra, I've both been able to increase the range of what I do and not suffer a relapse. Whew.
In any event, Susan and I were scheduled to depart Salt Lake City at 3:30 am this morning, so that we could both: a) enjoy the fabulous canyon country of the Colorado River; and b) get back to Duluth in time for her to be well rested and back at work Monday morning. That meant setting our alarm for 2:10 am, so that there was time for a shower before taking a taxi to the choo choo station. We knew things were going to be tricky when we awoke around midnight (it's hard to sleep soundly when you have to wake up early) and discovered that the power was out in our room. Oops.
We had been careful to make sure that the train was running on time before ordering the taxi (we might as well sleep in a bed for as long as we could), but when we got our 2:10 wake up call from the front desk and realized that the power was still out, we figured we'd skip showering in the dark. Rats! If we'd known we were not going to shower we could have slept another 15 minutes. Sigh.
The taxi was already there, waiting patiently for us when we made it out to the lobby, and we found out from our cabbie that there was widespread electrical outages across the city, due to a powerful electrical storm that had hit late the previous night—after we had gone to bed.
When we got to the station, the Amtrak agent told us the rain had produced flooding in northwest Utah and that our train had falling behind schedule by 90 minutes as it tiptoed through the high water. Uffda. That meant cooling our heels in the station for all of those 90 minutes. So much for advance planning to maximize our period of uninterrupted sleep.
From there our luck turned. The beds in our roomette had already been turned down by the car attendant and we just tumbled into them once we climbed aboard, happy to enjoy our night's sleep, part II. When we awoke three hours later, right outside of Helper, we had almost had a regular amount of sleep. And after breakfast (think coffee) we were almost normal.
In any event we've enjoyed the day thoroughly, rubber necking out the window at the fabulous geology, and not needing to go anywhere, excepting back and forth from our room to the dining car as we've steadily chugged east, to rendezvous with our car in St Paul Sunday morning.
Monday, May 16, 2016
FIC has been publishing Communities Directory since 1990, first as a book, and then (starting in 2004) as a searchable online database. It is the thing that the Fellowship is best known for.
While FIC tries hard to be even-handed and fair in how the information is displayed, readers occasionally give us critical feedback about the listings—we get about 2-4 complaints per year. The complaints sort into two kinds: a) someone is unhappy with FIC, perhaps because they feel they've not been treated fairly or respectfully; or b) someone is unhappy with a listed community. Most feedback falls into the latter category.
When this happens we investigate and try to resolve any concerns. It might be that a reader has found the listed information to be misleading. Or it might be that their experience with he community has been upsetting and has nothing to do with the listing. In either case, we step in and try to sort things out.
Sometimes it's simply a misunderstanding. Sometimes there's a disagreement and FIC can play a role as a third party to deescalate the tension and get things proceeding again on an even keel.
Sometimes though, it's too late by the time we arrive on the scene, and the best we can hope for is an amicable parting of the ways.
This past week we fielded a complaint of this last kind and it was a challenge to work through.
We try to approach these situations in a consistent way: our first effort is to reach out to all parties and ask to hear their story about what's happened. Once we have that, we reach across to the folks on the other side and ask what portions of the story, if any, they agree with. In this case, there was precious little common ground. Sadly, both sides claimed that the other had been threatening and belligerent, yet owned none of that behavior themselves (even to the point of having made death threats!). While I did not hear any reports of physical violence having taken place, it was hard to imagine a situation more polarized.
The precipitating issue was whether investors in the community had been promised a warranty title to their property, and the extent to which the lack of a title was making it difficult for people to sell their homes.
The disgruntled folks claimed that they were misled and that their life savings were tied up in property that they could not sell. The satisfied majority claimed that everyone was informed about the title issue up front, and that many property owners have been able to buy and sell their community property even so.
So, while there was agreement that individuals were not being given warranty titles, there was no agreement about when people were apprised of that, nor about the consequences that followed from it.
It is not FIC's role, in situations like this, to act as judge, or to determine who is in the right. Instead, we simply establish where there is common ground and where there isn't. Once we have that sorted, we try to get clear what outcome is desired and help all parties work toward a workable resolution.
In the instance last week it was hard to understand why both both parties were still living together. The hurt and mistrust ran so deep that it was almost impossible to picture a reconciliation.
On both sides of this issue, it took several communications before I got anything other than an attack on the other side, in an attempt to convince me that "those folks" were evil. When I wrote a straight forward summary (something like, "The stories don't match up well, and each side is accusing the other of threatening behavior, without owning that any of that is being done by them.") what I'd get back is more "evidence" of the other side's perfidy. Further, they were starting to suspect me of being a dupe of the other side because I wasn't immediately persuaded by their condemnation. Yuck.
While it may be temping in such circumstances to despair of ever getting out of the starting gate, I think what was mainly going on was that everyone was pretty upset and my summaries were insufficient to establish that I had fully heard them. ("If I really go it how upsetting this was, I wouldn't be so goddamn calm.")
While this works quite well in general, it's sobering to see people ostensibly dedicated to cooperative principles and harmonious co-existence engaging in war mongering with one another. To be clear, I don't think intentional communities will eliminate conflict in the world—and neither is that the position of FIC—yet we do think that living cooperatively can be a building block of world peace. It all hinges on how people (and the groups they create) respond to disagreement.
What is dismaying about the group I was working with last week is that everyone I communicated with (about half a dozen) seemed to be more concerned with being right than being in good relationship with one another. In fact, each went so far as to label those on the other side of the aisle as evil and irredeemable. While there is considerable room for people to have differing opinions about what constitutes the most hopeful approach to world peace, I'm pretty certain that the path being followed by this group will not lead there.
Thursday, May 12, 2016
After a hiatus of 16 months this week I have (finally) resumed work on authoring books. While this is a large task and won't end soon, it doesn't advance unless I do the work. Happily, I now have the time and motivation to set aside two half days a week (Tuesday and Friday mornings) to establish some momentum on this. And who knows, if it goes well enough I might throw more time at it. This last Tuesday was my first day back in the saddle.
I notice (with chagrin) that I have allowed all manner of things to get between me and this task since Jan 3, 2015—the last time I'd worked on his prior to Tuesday:
—relocating (twice, no less: first to NC, then to MN)
—heavy workload (both as a process consultant and as FIC's main administrator)
—preference for things I can easily complete (I have a marked tendency to favor tasks I can complete in one or two sittings; as a result, longer term projects tend to languish)
Cancer has helped me digest the uncertainty of how much time I have left in this veil of tears, and given me the impetus to shake things up a bit, pushing to the side the less important to concentrate on those things that might do the most good in the world. In essence, my writing will be an attempt to draw together what I've learned over the last 66 years—especially over the last 42, my time immersed in community.
Although I've become a steady writer, almost all of that has come in short pieces: articles, reports, and blog posts. Now it's time to draw them together by theme, fill in the blanks, and develop a uniform voice.
As I envision it, the work will flow in stages.
Step 1: Review what I have
Ironically, in order to produce a quality book, the very first thing I need to do is a ton of reading. Both of my work (see below) and of my contemporaries on the same subjects, to see what is is already out there.
With respect to reviewing my own work, I can't imagine how this would proceed without a computer, where it's all stored in one place and relatively easily accessed.
This necessitates rereading:
—all 982 of my published blog entries (from December 2007 forward)
—all my reports to groups that hired me as a process consultant (from 1987 forward)
—all my published articles (mainly for Communities magazine, for which I've contributed six or seven annually since FIC became the publisher in 1994)
—handouts for my facilitation training program (there are about 100)
—handouts for the dozen or so standard workshops that I offer
It's a gob.
To be sure, there is considerable overlap among these sources, some writing is more about whimsy and bemusement than trenchant insight, some I no longer believe, and some is irrelevant. So I anticipate that there will be an enormous amount of winnowing.
Step 2: Sort my extant writing into themes
When I first conceived of writing a book, it didn't take me long to figure out that I was really talking about a number (or possibly a series) of books. So I sat down and thought through what all the topics might be and came up with 17 different categories!
It was important to have that framing done at the outset so that everything could be sorted and logged as I reviewed it. Now, as I read something, it either gets consciously (if lovingly) dumped, or placed in one or more of those 17 categories—all of which are potential books (if I live long enough and remain sufficiently motivated).
After the sorting, I'll review the raw material for each topic and contemplate whether there is enough there to warrant a book, proceeding only when my head and belly both say "yes!" (I'm confident that the book total will ultimately consolidate into a number far smaller than 17.)
Step 3: Develop each book individually
All those passing the previous hurdle will be worked from two ends: a) what have I already written (that I still believe is germane and true) and what are the holes; and b) if I started from scratch on this theme what do I think I have to say (I want to guard against missing some big picture, whole forest elements by focusing too much on individual trees).
It's possible, I think, that some of what makes it past Step 2 will stumble in Step 3 and get washed up on the shore. That is, once I get down to the nitty gritty of what I have to say, I may not be all that impressed, resulting in my pulling the plug on a particular theme.
Step 4: Bring in the red pencils
Once I'm satisfied with an overall outline, I'll pause and bring in editorial assistance to help me with conceptualization. I already have one or two friends and peers lined up who know me well, know my subjects well, and have editorial skill and experience. They are willing to help me assess what I have and what's missing.
Once we are agreed on what needs to happen it will be my job to fill in the blanks, craft bridging language, develop supporting graphics, etc.
There is a large creative opportunity lying in this segment of the work, where I need to make decisions about how to reach my audience. Effective writing is much more than cogent ideas well connected; it is also finding ways to make my ideas accessible and compelling to the reader. That means deciding who my audience is and how I think my work will be used.
While I'm sure I will rely on stories to supply vivid examples of the points I want to make, I have a choice between developing a fictional cooperative group that I can use repeatedly throughout the book, or actual live examples from my years in the field.
Step 5: Complete a draft and get it edited
This section could take a while unless I'm highly disciplined. My sense is that it will be important that I work steadily here to bridge the gaps, establish the connections from one point to the next, and flesh out the main ideas.
Following this stage will be another round of review, done at a finer level. First, copy editing, and then proofing, until everyone is smiling.
Step 6: Get the book laid out
Here I'll rely on friends and compatriots even more. While I will unquestionably have opinions about layout (as well as title and cover design—hell, I have opinions about everything), I will defer to others who are more skilled than I am in these arenas. Graphic design is not my forte.
Step 7: Identify a publisher
There are some interesting choices here and I am undecided at this point how best to proceed. Essentially there are three forks in the road: a) self-publish; b) ask FIC to publish; or c) seek an alternative press to publish. Although potential income is a factor, my biggest focus will be on the help I can expect in promoting the book. I don't particularly want to take the lead on that, yet I have a healthy respect for how much of a difference good promotion and marketing can make in a book's reach, and I want my books to be well distributed.
Further, I'll want enough editorial control that the publisher won't monkey with my main points. It's fine for them to ask questions and to push me about things they find unclear or disagreeable, but I don't want there to be any doubt about who's driving the boat.
Monday, May 9, 2016
You can't judge an internal injury by the size of the hole.
—Salman Rushdie, Satanic Verses
This is the kind of insight that I would ordinarily have passed right by, but when I came across it last month, I lingered. Checking on Wikipedia I was pleased to see that others have found this a noteworthy sentence before me.
As someone suffering from grievous injury (life threatening cancer), I wonder how the metaphoric hole in my health impacts me.
How I Relate to Death
Overwhelmingly, my 66 years (so far) have been characterized by good health. I've rarely been sick, have never broken a bone, and went 27 years as a process consultant before postponing a job due to ill health. Now, perhaps, that good fortune is catching up with me. In late January I discovered I have multiple myeloma, and it represents a major league health challenge. It may kill me.
While I'm working hard with my oncologists to contain the cancer and secure several additional years of high quality living, it's too early to tell who will prevail in the next roll of the dice. I will be undergoing a stem-cell transplant in July (which entails six weeks of treatment at The Mayo Clinic in Rochester MN) and my life expectancy will be profoundly influenced by the outcome of that procedure.
Because expectations have a direct bearing on results, I have learned to be an optimist. Thus, I look ahead to July with hope and a positive attitude. My will and my constitution are strong and I think my time at Mayo will go well.
That said, rosy glasses are not the same as a sure thing, and the several months between diagnosis and transplant have given me ample opportunity to sit with the very real possibility that my life may soon end. Here's what I've noticed so far.
The Dying Die has Many Facets
—There is the practical side, not wanting to leave loose ends for others to clean up and making conscious choices about how possessions should be distributed. (In fact, if you're diligent enough a will is not needed because everything of value has already been assigned.) Because I have not led an acquisitive life, this aspect of the looking was not that difficult to handle.
In the arena of possessions the trickiest part falls under the category of "intellectual property." Over the years I have invested a great deal of thought and time into the field of cooperative group dynamics, and most of that is captured (in one form or another) in my considerable body of writing. Who should own that? What would I like its disposition to be?
While there may be some monetary value in my writing, I believe that's a long shot and I'm mostly concerned with how my ideas are treated after I'm gone. Will they be lost, or will they continue to be alive in cooperative conversations?
While this is of compelling interest to me, it's more about leaving something of value for others than about ownership or credit. Thus, if you could offer an assurance that my ideas would continue to be worked with I would happily exchange that for attribution (people knowing that the ideas came from me). I want my contributions to last, but have no attachment to people knowing where the ideas came from. Attribution helps when one is alive, because it leads to additional invitations, but it isn't of much value after I'm dead.
—On the social side, I have been amazed at the outpouring of support that has been extended to me in my illness. In addition to well wishes, this has yielded hours of heartfelt emails and a plethora of visits to Duluth, celebrating connections at my time of need.
By setting aside my work obligations there was suddenly plenty of time for relationships (in addition to therapy) and this felt solid as the thing to place in the center of my attention. There is a tendency to let relationships slide in the pursuit of one's work life, and I was grateful for the mid-course correction—reminding me in no uncertain terms that people matter more than things.
Though the adjustment was not monumental, it was noteworthy and I was glad to make it. I figure it's never too late to get your priorities right.
—Emotionally, this marked the first time I've faced my own mortality other than as an exercise. What if I only have a matter of months to live? Am I afraid?
Though I am not counting on there being a life after this one (and am therefore plenty motivated to make the most of the one I have), I've always known that eventually the sun would set. Unexpectedly getting information that the sun may be going down more quickly than I was anticipating did not change my fate—it just moved it up on my radar screen.
So here I am watching myself for signs of denial or avoidance. I've gone through some stretches of physical pain, and I expect that there will be more ahead. Maybe the pain will become too much and I'll freak out. Though it hasn't occurred so far, who can say it won't down the road? While I don't believe in heroic medical procedures where there is no reasonable prospect of improving one's quality of life, how can I be sure I won't grasp at straws at the end? I think the most honest answer is that I don't know.
—Spiritually I don't know if I'm any closer to knowing God, or her will. I'm convinced that I would not have lasted much longer if my cancer went undiscovered beyond my hospitalization Jan 31. But even being close to the edge did not lead to any epiphany about the meaning of life, or right relationship to Spirit. I have not regretted any major life choices; I have not pined for replays.
Mostly I'm happy with my life. While I'd prefer having more time (to push my thinking and my contributions a little further), I'll be at peace if that doesn't happen. I've had a good run.
My sense is that I've sustained enough damage that I'll never return to the health I once had. Mind you, I may have a number of productive years remaining—which I'm hoping for—but it's hard to imagine that I'll ever portage a canoe again, or hike segments of the Pacific Coast Trail. For that matter, I'll never build another cistern or fell a tree.
That's OK. There are unlimited books to read, conversations to have, and articles to author. There is plenty of wonder left in the world. While there is a hole in my life that will never close, there is still plenty of the whole left to explore, to taste, and to savor. Susan and I prefer to focus on the amazing opportunities that yet remain, rather than lamenting those that got away.
We think of it as a style choice. If the brave leaves can emerge from the trees of Duluth, as they are now, than surely I can green up again as well.
Friday, May 6, 2016
Here's what I penned yesterday:
I know it's Cinco de Mayo, when people's thoughts naturally drift toward Mexican liberation and Mexican libations (not necessarily in that order), but I'm thinking about bridge. This evening, for the first time since settling in Duluth, I'll join Susan in a group playing bridge, and I'm looking forward to it.
The trick for me will be keeping myself appropriate. It's a beginners class that meets every Thursday evening, and Susan participates as a student. She spoke last week with the instructor about my situation, and I've been invited to join them this evening as a guest.
The thing is, I'll be a ringer. I've been playing duplicate since 1999 and would like to get involved with in the duplicate scene in Duluth. Fortunately, Duluth is a large enough city that they have two games per week. One is on Mondays (which runs smack into a regular infusion therapy appointment I have for treating my cancer). The other is Wed evenings at 6 pm, which might work fine.
Tonight I expect to just observe—playing only if they have an odd number of participants (as opposed to a number of odd participants). It's all together possible that I'll have learned some different responses than the instructor over the last 17 years and it would be gauche for me to start teaching heresy (does a negative double in the sequence: one club, one diamond, double promise both four-card majors or only one?), so I'll need to be quick on my feet and not so quick with my tongue (not exactly my forte).
Hopefully there is enough flow among the local bridge players that I'll be able to manifest a partner for the Thursday evening game. We'll see.
While I was already pumped up for card playing after getting in a few casual bridge hands on Saturday, when Susan and I were visiting Ray & Elsie at their cabin in Stone Lake WI, my friend Cecil added another log to the fire last night when he suggested trying to set up a visit in the coming months where we could combine camaraderie with a sectional bridge tournament.
Cecil used to live at Dancing Rabbit before moving to Manhattan in 2007, and we had become regular partners for the once weekly duplicate game in Kirksville MO. We enjoyed good chemistry together and I was sad losing him as my partner. As he started playing duplicate a good bit after I had, he was behind in accumulating master points en route to becoming a Life Master, and we lost momentum when he moved east.
Since then we have managed to get together once (in 2011) for a regional tournament in Saratoga Springs NY, where we had enough success in two days to secure the remaining gold points Cecil needed to reach Life Master. Now he only needs silver points, which are available only at sectional tournaments. So my interest was immediately piqued by his suggestion that we try to line up his prospective visit to coincide with a three-day sectional in the land of 10,000 lakes. We can do this!
Meanwhile, I need to knock the rust off my game—it is not enough reading Frank Stewart's daily bridge column in the Minneapolis Star Tribune. I need to actually play cards.
Much as I enjoy margaritas, chips, and salsa—and I do—for today's Cinco de Mayo I expect to enjoy the piquancy of bidding and making small slams and vulnerable games even more.
The featured lesson last night was negative doubles, and I had sympathy for the students. With a very limited vocabulary, the modern bridge world freights the term "double" with an amazing array of meanings, and it's bewildering for neophytes trying to keep them all straight. While negative doubles are a highly serviceable concept and well worth adding to one's bidding repertoire, it's towered atop employing doubles for penalty or take out, which concepts had already been introduced to the class.
Just to frame this well, there was no mention last night about how the concept of double can mushroom to include responsive, lead directing, balancing, reopening, support, snapdragon, stolen bid, and striped tailed ape. It can get confusing.
The main thing though, was that I was playing cards. Yippee! I met briefly after the class with the instructor, Steve, and he encouraged me to drop by the regular duplicate games Monday afternoon and Wed evening. He said the group is good about finding everyone a partner (which I'll need), so all I need to do is show up. It won't be until the end of the month that I'll have a free Wed, but I'll get there.
Monday, May 2, 2016
We got to flip a calendar page this past weekend and I thought I'd share with readers some of what I indulged in from COB Friday until Monday morning. Sort of a day-in-the-life of cancer survivor awaiting transplant therapy.
o Today, for the first time since last fall, the entire state of Minnesota was depicted in yellow on the US weather map, indicating that the highs today would be at least 60 degrees statewide. Woohoo! Can leaves be far behind?
Susan and I got a sneak preview of spring Saturday when we drove down to Stone Lake (about 90 miles south of Duluth) to spend the day with good friends, Ray & Elsie Martin. They had leaves down there, and the green in the winter wheat was mouthwateringly verdant. (To be fair, the air temperatures were still chilly and we put the fireplace to good use after dinner. So there's still considerable warming to accomplish before going crazy with Japanese eggplants in the garden.)
o Yesterday afternoon, Susan and I attended a surprise birthday party for a friend named Nelson. It was held outdoors at a marina in Superior (which worked out OK if you were in the lee of the building, bathed in the late afternoon sun). In addition to meeting gobs of Susan's friends and local connections, they served a catered sit-down meal centered around pasties and a delicious cole slaw.
There is nothing more evocative of place than characteristic food, and pasties are inextricably linked to the North Woods for me. I last wrote about them the last time I enjoyed a pasty (Catching the Ferry in 2010) when I spent a couple weeks vacationing on Drummond Island off the Upper Peninsula, and it all came back to me with the first bite. Finely chopped potatoes, carrots, and onions commingled with meat shreds in a savory pastry shell. Yum!
o Since taking the plunge back in 1999, my favorite recreational pastime has been playing duplicate bridge. To be sure, I enjoy many things and love game playing generally, but nothing beats bridge at the duplicate level. I used to play regularly (once a week) at duplicate club in Kirksville when I lived in northeast MO, but I've only managed to play one time (last August, while visiting Sandhill) since leaving MO last June.
Of course, mostly this got set aside in recent moths to attend to my health, but I'm well enough now to indulge in occasional card playing and I was happy when Susan suggested that we play bridge with Ray & Elsie Saturday afternoon. While we only got in about 10 hands it has great fun (especially for Susan—the birthday girl—who was dealt one terrific hand after another) and I had the chance to play a couple of slam hands, the best one being off an ace with the king of trumps lying offside. When the defense failed to cash their ace on the opening lead I was able to wriggle out of losing it by establishing a side suit, and my 12th trick came from playing the seven of spades (a side suit) after roughing out the defense's 10. Very satisfying.
Susan plays bridge on Thursdays in a teaching class and I've been invited to go with her this coming week to see where I might fit into the Duluth duplicate scene.
o Over the weekend, Susan and I started mapping out our support schedule for my coming stay in Rochester (in conjunction with my stem-cell transplant at the Mayo Clinic, starting July 12). We are blessed to have four different folks who have volunteered to do a shift while I'm in Rochester and take over the role of primary caregiver for a few days, giving Susan a break. In all, I've been told to expect a stay of six weeks, and it will be great for Susan to have regular breaks.
While she and I like being together, there are limits. Planning for breaks at the outset creates a more humane schedule. Here's what the support person will be asked to provide:
—Escort me to and from Transplant House to Mayo's for daily testing and treatment.
—Be my cheerleading squad, helping me stay in good spirits while I cope with the heavy duty chemotherapy.
—Encourage me to get regular exercise (seeing how quickly my body atrophied after three weeks in the hospital in Feb, I am determined to do what I can to not suffer as much physical deterioration this summer).
—Cajole me to drink enough liquids (three quarts daily).
—Get me to eat enough protein (despite the expectation that my appetite will be diminished).
This should leave plenty of time for visiting, working crossword puzzles, reading novels, and listening to Giants games on radio (streamed via my laptop). Who knows, maybe I can find four for bridge among the transient members of Transplant House.
o Gradually, I've been upping the ante on social engagements as my strength improves. Susan and I attended a local performance of the Broadway musical, 42nd Street, Friday evening; we drove to Stone Lake WI for the day on Saturday; and we attended a birthday party Sunday afternoon. While I don't intend to be busy like that every day, it's nice to know I can handle it.
In fact, despite the increased activity level, I was able to navigate the entire weekend without once relying on extra medication to see me through. It's nice to have additional spring in my step right as there's additional spring in the air.