Failing to Pick Up on the Need to Defund Consumption

I was shocked to hear on the radio today that the top three selling vehicle models in the US are all pickups.

Think about that. 

I lived on a farm for 40 years and there is definitely a place for pickups as part of a vehicle fleet in rural life. At Sandhill Farm (where I did the bulk of my community living) we always had a pickup. There were times when we needed to haul heavy or bulky things and that's what a pickup is good for (by extension you can make a reasonable argument that pickups are darn near essential at industrial job sites as well). That said, we only used our pickup about 10% as much as we used our regular vehicles—because even on a working farm, the overwhelming majority of the time you simply use vehicles to move one or two people, and pickups are grossly inefficient.

What do I mean by "grossly"? The gas mileage for this year's pickup models is in the 15-20 mpg range. The mileage for this year's sedans is typically 30 mpg and up. The US Dept of Transportation figures that the average American drives 13,500 miles annually. If you do that in a pickup that gets 16 mpg, you'll buy 843 gallons of gas. If you do it in sedan that gets 32 mpg, you'll need only half of that, or 421 gallons (not to mention hundreds of hours in better seats). If gas costs around $2.50/gallon that's roughly $1000 difference in what you'll pay for gas.

When you take in the sales data, it's obvious that most of those hot-selling pickups are not being bought by farmers worrying about schlepping hay bales to cows in the back 40, or by oil drillers running extra pipe to a wellhead. So what's going on? As near as I can tell, owning and driving a pickup has become a status symbol. Think about how ridiculous that is—all the more so in light of folks complaining about economic strain right now. (I know, it may not be the bottom third of the economic pyramid who is buying his and hers F-150s, but you get my point.)

We're living in a world that desperately needs to reduce its carbon footprint, and with spectacular inequalities in how resources are distributed among the nations of the world. As a developed country that uses way more than its share of the world's resources, how do we sleep at night buying all those pickups? With the brick wall of limited resources right in front of us, in what reality does it make sense to increase consumption to make a fashion statement? This is developing conspicuous consumption into an art form—on the order of sport killing buffalos from moving train and letting the meat rot (yeah, we did that, too).

Instead of focusing on car pooling, we're focused on car fooling—as in fooling ourselves that we're taking the consequences of over population into account. Instead of car sharing, we're indulging in car foreswearing—in favor of gas-guzzling trucks. 

Surely we can do better.

Navigating the Emotional Minefield

One of the defining indicators of the health of cooperative groups is how they respond when strong feelings emerge among members.

Most of us were raised in a mainstream culture that did not develop our capacity to know our feelings or understand what constructive responses would be when they erupt in others, and few groups select for members who have that orientation. (To be clear I'm not talking how to handle unbridled joy. I'm talking about rage, paralyzing fear, deep sadness, overwhelm, and even grief—you know, the hard ones.)

If the group does not explicitly discuss how it wants to engage with feelings, mostly they don't, and the results of that neglect and chaos are not pretty. A good portion of my work as a consultant to cooperative groups revolves around trying to help them understand why they need to develop an ability to work with feelings, and how to do it.

The interesting case is when one or more members attempt to traverse an emotional minefield (by which I mean a stretch of territory where it is suspected that strong feelings may reside below the surface) and someone explodes—perhaps by intentionally triggering someone known to be sensitive in a particular way, or perhaps inadvertently, but an explosion nonetheless. Now what? I want to examine three possible responses:

I. Cordoning off the Entire Area

If the group reacts with anxiety, and fears an escalation that may result in severe damage to relationships, they may call an immediate halt, clear everyone out of the field, and declare return visits off limits. That topic (that minefield) is now taboo. In general, this comes from most (all?) members having no experience of examining feelings as a safe exercise. Many have personal memories of such sharing having no boundaries, with the result that people come away feeling abused, exhausted, and no better informed. So why allow it?

While this response has the benefit of limiting the potential damage that can result from attacks that accompany outbursts, it also has the unintended consequence of teaching people that they can control what is discussed through expressing distress, and the louder the better. Not good.

2. Designating the Explosion Site Off Limits

This, obviously, is a more measured response, but it's still a rejection of opening up to emotional expression. In this case, it's evaluating such incidents on a case-by-case basis rather than with a blanket prohibition. Maybe the next explosion won't be so overwhelming. 

In this response the group is willing to leave the door cracked, hoping to develop some capacity to work with feelings, while at the same time protecting against potential aggression, by reserving the right to clamp down on it if it feels too dangerous. This can be received as a mixed signal. When the light is yellow instead of red, those who go into reaction may feeling authorized to express themselves (assuming they have sufficient control to choose), while those most leery of being exposed to raw feelings may feel they were being given protection that may not be there in their moment of need. This can go sideways quickly.

3. Bringing in a Medic

Reactivity happens. As all humans are emotional beings (as well as rational) let's first make sure that aggression is limited, and there's no arterial bleeding, and the let's find out what it means. In my experience, the group will ultimately be far better off if stays with the reaction long enough to be sure it understands both the reaction and the trigger, as well as what meaning that has for the person (if you project meaning onto the incident without checking it out, you are subject to all manner of mischief). This is data. If the distress surfaces in the context of the group wrestling with an issue, this data may be highly relevant to what the group is working on. 

To be clear, I am not suggesting that the upset person gets to control the outcome or the narrative—you are only getting their story, yet it's something to take into account. It is a matter of discernment what weight to give it, just like any data. I am only trying to make the case that knowledge comes in a variety of packages and emotional knowledge is no less inherently valuable than rational knowing. Groups are thus well advised to develop the capacity to speak in both tongues.

If you don't, the person in distress is likely to be isolated and pathologized ("we expect members to control themselves in meetings and outbursts are not welcome; we will not dignify it by giving it attention"). The massage to everyone else is: don't try this yourself; translate your feelings to thoughts if you want them to be respected, or shut up. This effectively cuts off people in distress from being seen as useful members in problem solving, and people in reaction may be tied in knots trying desperately (in silence) to figure out what they will be allowed say, meanwhile missing what others are saying. It's expensive.

• • •

Having said all that, it's understandable why groups don't necessarily start with an understanding of why they need to develop the ability to work emotionally. If everyone is a fish swimming in the waters of rationality, why contemplate what it might be like to fin through a sea of feelings? The reason, of course, is that humans bring their emotional selves into the room every time there's a meeting, and no amount of cultural disapprobation will prevent all expression of strong feelings. It's just not how humans are wired, no matter how hard you try to squelch it. Pretending otherwise is a barrier that gets in the way of the group doing the deeper, richer work of which it is capable.

So you need to have an agreement or two about how you'll handle that. And if you decide to engage (which I strongly recommend) then you'll need to agree on how, on what license you'll give facilitators to go there, on how you'll adjust agenda setting to allow for it, and on how you'll skill up your community to do it well (do not under any circumstances promise that you'll create safety for exploring strong feelings when you don't have a clue what you're doing). All of this is worth the effort, but it's a package and it's an investment.

When people move into intentional communities they are purposefully choosing to live in greater proximity to others, and agreeing to share decision-making more than is done in traditional households. This invariably leads to friction. There is a naive projection that many first-timers carry with them into community living—hoping that shared values and a commitment to cooperation will mean less friction. Sorry. It doesn't work that way. We all bring our quirky personalities and competitive conditioning with us and when we disagree about nontrivial matters, the gloves come off and strong feelings are alive and well.

The measure of a group's health is not how much conflict it has; it's how it navigates the minefield.

Aunt Hennie's Fruit Cake

This morning I laid down the fruit cakes.

Let me explain…

Most all of us have family traditions with roots back to our childhood. Sure, they can be quirky and idiosyncratic, but cherished nonetheless. One of the ones that bubbled up for me recently was homemade fruit cake—far better than store-bought—which was deemed an essential contribution to the Schaub family Christmas hoopla. lovingly assembled by my Mom's older sister, Aunt Hennie.

As it happens, Hennie and I share a birthday (a sure omen of astral connection). She was born in a two-story frame house built on the open prairie 20 miles west of Chicago in 1899 and lived a homesteading life growing up. Over the years, of course, the inexorable march of the suburbs gradually overtook her and today the house—which still stands—is located smack in the middle of an established residential neighborhood in Elmhurst Il. 

As the acorn that wandered furthest from my suburban upbringing, I helped start Sandhill Farm  a homesteading community in northeast Missouri when I was just a callow youth of 24. One serendipitous result of that was that I was the beneficiary of much homesteading equipment that had been languishing in Hennie's basement, looking for a good home. I'm talking about a major league cabbage shredder (think sauerkraut in quantity), a bunch of ceramic crocks, a start of hard-to-find black currant cuttings, and a massive wooden butcher block contributed by my mother. 

In any event, Hennie got along in years (it's a trend, I've noticed) and at some point she was no longer able to deliver the fruit cakes. I believe that ended in the 80s, but the memory persists and she passed along the recipe. Once or twice my sister Tracey had a go at it, and another time my daughter Jo did a batch. This fall, in the Year of Quarantine, I decided it was my turn in the barrel and I took advantage of my weekly trips to Mayo Clinic (in Sept and Oct) to lay in a supply of dried fruit and nuts.

Not finding a ready source of dried orange and lemon peel, I made my own (isn't that what homesteaders do?). I chopped and combined all the fruit, nuts, and spices in late October and the sticky conglomeration all went into an airtight container where it marinated in a sacred concoction of brandy and whiskey. This got carefully stirred and replenished from time to time until yesterday, when it the baking happened!

This entailed creaming sugar and butter until my arm cramped, adding the fruit, and finally some. flour before pouring it all into tins (think banana bread size) and slowly baking for a couple hours.

They turned out beautifully and I'm now in the finally stage. This morning I took the cooled down cakes (there are four) and wrapped them in brandy-soaked cotton cloth (did you notice the alcohol theme?) and then in tin foil to retard evaporation of the precious liquor. They now rest on the basement floor in an airtight container for two weeks of seasoning. They'll be ready Dec 17—just in time to be mailed to my kids for a renewed under-the-tree tradition.

What could be a more loving gift?

Today, on this day of thanks, I'm reflecting on the joy I derive in mental agility. The delight I take in whimsy. While my overall constitution has been diminished by my five-year battle with multiple myeloma, my mental acumen has remained surprisingly untouched, and for that I am unalterably grateful.

So let me take you on a little journey I've been dwelling on…

The Joy of J

This past week I have had occasion to reflect on the power of simple words, comprised only of the consonant J and vowels (it's not a long list):

Jo

This, of course, is my daughter. Born Josefa, she has long preferred to be called Jo. On Monday she reached a particular geeky milestone (which likely would have gone unnoticed if I didn't call it to her attention): she turned exactly one-third of a century old: 33 years and four months. It seemed worth celebrating to me. Who has too much joy in their lives these days? I admonished her to go out and celebrate by thirds (not by half) and I'm confidant that she did.

Ja

While I'm basically a human mongrel (if you pay heed to the analysis 23 and Me) I'm more German than anything else, and have always had an affinity for German culture. I took three years of Deutsch in high school, but never lived there and never became fluent. Nonetheless, everyone knows that "Ja" is yes, and I've tried to live a life of affirmation (where it behooves one to try to say to "yes" as often as possible—life just works better for everyone that way). The life of ja.

Juju

Years ago, I lived at Sandhill (1988-95) with Julia Reed (from Big Lake MN). She was a dear friend and one-time intimate partner during that stretch. While our lives drifted apart when she left the community in the mid-90s, we reconnected when I landed in Duluth, while she's been living in St Paul. She found out about my cancer and visited me in the spring of 2016 during the annual Smelt Festival in Duluth (full of puppetry, parade, and goofball costumes). It's held in May and loosely corresponds to the annual smelt run on nearby rivers (where you can scoop up the little darlings in pots). For a northern culture that's desperate for a change in the seasons, it's often the first day that Duluthians come out of hibernation in numbers, and spirits abound (in both senses).

She and her partner Shari have been regular visitors to Duluth ever since (I think they'd come even if I didn't live here) but they always stop by for a visit, which I cherish. Based on a childhood appellation, she went by the moniker Juju at Sandhill, and I still call her that today.

Jeju

Years ago (2008) I conducted a facilitation training in Atlanta and when my partner (Mayana) and I lingered an extra day we used most of it to visit a Korean day spa called Jeju, and enjoyed a magical recuperative time. I have never been to anything like it before or since. For one fee, you can enjoy up to 24 hours on the premises, choosing from among saunas, hot tubs, massages (for an extra fee), light Asian cuisine offered on site al a carte, or meditation in salt domes. What a mix!

Although I don't have that many occasions to visit Atlanta, a return to Jeju, and another day of pampered relaxation, is still on my radar.

• • •

So those are the oddities that have drawn the lottery number in my brain for receiving special attention for thanks this week. I knew you'd want to know.

Qualities You Want in Community Members

Today I want to tell the story of someone I've become acquainted with in the context of doing work with her community over the past year. As I work with groups on the average of one or two per month and have been doing this for a third of a century, you can appreciate that a lot of hot water has flowed across my tea bag and I've met a lot of folks—many of whom are amazing. It's one of the cherished perks of my profession.

In any event, I'm taking the opportunity today to celebrate the qualities I've observed in one particular new friend that has touched my heart in a profound way (so much that I arose at 5 am last Thursday to compose this email to her, slightly edited to redact identifying descriptors):

We didn’t get off to a great start when I first arrived on the scene this summer and you were still in high distress following the precipitating incident, and you weren’t sure you could trust me. (On my end I have no trouble with your caution—it made perfect sense to me. You had been burned badly and didn’t want to expose yourself to more hurt. You were a wounded momma bear, and I was poking at the wounds.)

As you might imagine, it was not the first time that someone hasn’t responded well to me right out of the box. It goes with the territory. I’m brought in because of problems and it’s my job to go there. I never try to be mean, but I’m also direct, and that can be painful.

In any event, it was clear from your participation in the first community meeting (I try to track discontents pretty closely) that you were shifting in how you related to me based on what you saw—to the point where you volunteered to be in the circle with me for a clearing if someone wanted to do it with you, and that was not where you had started. I was impressed.

In my business there is a lot of easy talk about taking in information and adjusting one’s views, but I don’t see it nearly as often as people claim they are capable of it. You have been the real deal, and I’m taking time to honor you for it. You have been a delight to work with. Not because you agree with me all the time, but because you state where you are (I don’t have to guess), you listen to what I have say, and you sometimes change your mind. Not only that but you go through your internal process pretty quickly.

These are the qualities I’m trying to highlight:

a) You are committed to self awareness, and understand that this has to start with your emotional response, if that’s a component. That means knowing what your feelings are, and looking at how those responses are serving you or not, so that you can make a considered choice about which feelings to feed and which to shift. (This is not so hard to write, but there aren’t nearly enough folks capable of that discernment.)

b) You are willing to own your shit. Mind you, everyone is bringing some, so the nuance here is not that you have any, but that you are doing the work to recognize it and admit it publicly. That’s gold. It's a terrific model for those you live with. We all have feet of clay, but not everyone can own it. (You need look no further than Trump to see a spectacular example of someone who can’t do it. What an awful role model.)

c) After doing your due diligence with self care and self analysis, you consider the impact on the whole—what’s best for the group, without betraying yourself or your family. Boy do we need that. To be fair, there are plenty of others in the community who bring that capacity to the table as well (thank the goddess), but right now I’m highlighting that in you.

This is an awesome mix, and I love it when I see it. It’s what gives me hope that we can build a better world after all, despite all our human frailties.

So much for the molasses; now the sulphur. Here’s where I want you to stretch, where I think you can do more: learning to see difficult dynamics through the eyes of the people who irritate you. That’s where the money is. While people do stupid and ill-conceived shit all the time, they rarely intend to be shitty. They’re just doing the best they can with what makes sense to them in the moment, and if you can see that possibility (good intent coupled with sloppy delivery) it can help enormously to not stay stuck in a story about how they’re the antichrist. 

I'm talking about the difference between containing or limiting your reactivity, and actually seeing irritating people as good-hearted, just not as able. Notice how I immediately worked to find Dale [a pseudonym] a soft landing when she spoke provocatively at the last meeting. That’s what I’m talking about. I defanged the poison right away by first acknowledging her good intent and then getting her to admit that it was in her interest to learn to be less provocative, which she freely did. (I can’t guarantee that that will happen every time, or course, but it’s worth the attempt.)

This is the response I received later in the day:

I will say honestly that I still don’t understand your method in how you go about establishing relationships with people in a group at the beginning, and freely admit I did not trust you at all after our initial conversations, but I remained open to the possibility and hope that we would eventually understand each other better. I can truly say I have felt safe and confident with you in every minute of every meeting. I don’t really need to understand that discord, I just accept it. I have enormous respect and gratitude for the work you’ve done and continue to do with our group. I have learned an enormous amount about active listening just by watching you do it.

You really understand my strengths and my weaknesses and it means a lot that you took the time to reflect that back to me. I am frequently the one in the group asking that we begin by assuming good intentions of each other, and I am perfectly willing to admit that is probably because that is where I struggle the most myself—maybe not in theory, but in practice. Can I objectively stand back and recite the reasons behind someone's actions that have nothing to do with her being a bad person? Yes, as I did at the last meeting. But I see that I lose my grasp on that when it comes to practical application in instances like this—when I felt angry enough to think that shutting her out of meetings was the answer. (For the record I don’t believe she is inherently bad, but neither do I believe she is a safe person for my family to be in relationship with.) Detached from my feelings, I have no trouble agreeing with you that they have good intentions and want good and reasonable things—the same things I want. Emotional safety for themselves and their families and visitors in our community. Trust in their neighbors.

Sometimes (historically often) my frustration and impatience with others get the better of me and that shows, and isn’t productive.

My therapist has also pointed this out and the big work I am doing in therapy right now can be summed up in the one word—acceptance. The more I am learning to accept what IS (rather than being stuck in anger/sadness/frustration that what I WISH WERE is currently NOT) the more patient I become. Because when I’m stuck emotionally in resistance—like I was this summer—it has a hold on me every minute of every day. When circumstances beyond my control have much *less* of a hold on me in my daily life, patience becomes much easier!

I had a big shift moment when my therapist asked me “Do you think your community will ever be 100% healthy?” And I said “well no, of course not,” and she said “Can you accept that?” It was the exact right moment to ask that question (after months of my life being far too attached to neighbors’ needs, feelings and actions). 

I’m always trying to grow. I like what Brené Brown says so much—“I’m here to get it right, not to be right.” Being wrong doesn’t threaten my sense of self and that is the greatest freedom of all.

Wouldn't you like to live with people like her? Don't you feel that by teaming up with allies with those qualities we could actually build a world that could work for everyone? I do.

Virtual Surprises

We're now about eight months into the guarded physical and emotional reality forced upon us by Covid 19. I came home from a road trip March 12 and haven't left my state of home quarantining since. What's more, it could easily be another eight months before an effective vaccine is widely available. I'm thankful that my Amtrak travel credits don't expire with temporary inactivity.

While the pandemic has resulted in all manner of strains on individuals and households, I want to focus today on some of the impacts I've observed among cooperative groups—some of which are not very surprising, but some of which are.

1. The Tension Between Individual Rights and Group Safety

Interpersonal friction among groups didn't cease just because meetings in the same room came to an abrupt end. If anything, the cracks that existed before are likely to open up under the strain of travel bans, and social distancing. It can be particularly cruel on folks living alone, who were likely drawn to community for its social benefits and are now proscribed from enjoying them face to face.

On the one hand, communities are almost certainly doing a better job of checking on each other and supporting one another as they can, within the context of health limitations. On the other, a number of communities (especially the ones meant to be senior-oriented from the get-go, but also those who have grown their own senior class merely be being successful) have a significant segment of their population in the high-risk category and thus need to be on their toes (just not on anyone else's).

While no one build their communities or developed their social norms with a pandemic in mind, here we are, and the adjustments have not all been characterized by laminar flow. In particular, there has been strain in many places that mirrors what we've seen at the national level between those who: a) feel it's a fundamental individual decision to determine what constitutes risk management and they are loath to have their rights trimmed by the anxieties of their neighbors; and b) those who are horrified with the concept of trusting their neighbor to determine, without a conversation mind you, what behaviors should be acceptable to them. They want a collective conversation about safety in the time of Covid, and struggle to understand what they see as unconscionable selfishness by those who don't want to talk about it. It can get ugly.

What constitutes an appropriate level of home quarantining for an entire community? What can be expected (required?) in the way of testing for community members? These are not simple questions.

To be fair, my sense is that communities are working through this stuff, but the road has been bumpy and the collateral damage has not all been addressed or repaired. There is clean up work here.

2. The Potency of Zoom Facilitation

Over the course of my 30+ years as a professional facilitator and process consultant, I've held the view that there was no substitute for being in the same room, where you can feel the energy and track nonverbal clues. While I've always maintained a lively email correspondence and steady phone traffic, these were invariably meant to augment my working with groups in place… until the last eight months, when the only place that existed for a consultant has been virtual.

Forced by Covid to adapt to a changed world, I have experimented with facilitating from afar, via Zoom, and have been surprised to find how effective it can be—even with groups I've never met before. This was a happy discovery—and one I didn't expect. Unless the group is larger than 24 (I can get a 5x5 array of boxes displayed on my laptop screen—numbers above that result in multiple pages of participants, which are much harder to visually track) I've been impressed at how well it can go. 

I've thought a good deal about why that might be, given there is necessarily a loss of granularity with Zoom—that is, there is clearly less information available to work with. My best guess is that I have developed a certain amount of refinement in my skills over the years and redundancy in the ways I take in input, even at the cellular and intuitive levels, such that the loss or constriction of some channels still provides enough bandwidth to do my work, even when the dynamics are messy and complex (which is probably redundant).

Given that messy and complex is more or less my specialty, it's a damn good thing that I can still deliver. I experimented cautiously at first (not wanting to overpromise), but now I have enough Zoom experiences under my belt to feel confident in what I can deliver. I'm even resuming the delivery of three-day facilitation trainings, entirely by Zoom. It's a brave new world.

3. The Courage of Zoom Participation

Finally, I want to make a surprising observation about doing emotional work via Zoom. As you know, our wider culture is not known for its forthright acceptance and facility for meeting one another on the emotional plane, and it's my firm belief that we have to develop that capacity in order to realize the potential of community living. Without it, our interpersonal relationships—the heart blood of community—are stultified and incapable of fully blooming.

What I've discovered, while endeavoring to work sensitively with feelings using Zoom, is that many people feel less trapped in the spotlight when unpacking emotional distress from the comfort of their own home. Neither are they as prone to indulge in rants as they are via email. It's a double blessing. On the one hand there is more accountability when addressing one's neighbors through the visual pane of a laptop. On the other, I suspect people may feel safer than when working these dynamics in the same enclosed room. It's an unexpected sweet spot.

To be clear, I'm not reporting a sea change. Distress still exists and groups still struggle with how to respond. I'm only reporting a certain subtle shift in there being somewhat less reactivity via Zoom—an unexpected yet nonetheless welcome deescalation in work that can be often be highly volatile. In any event, I'll take it.

Tuesdays with Mayo

No, I'm not referring to a new sandwich option at Ruby Tuesday's—I'm talking about my current treatment protocol in my ongoing dance with multiple myeloma.

The Back Story

I started experiencing serous back pain in late 2013, which eventually led to my getting tests done at my local hospital in Memphis MO in December 2014 (you may be wondering what took me so long, but I have a reasonable tolerance for pain, and I've always been able to heal myself by "riding it out," so that's what I was attempting). In any event, I had a CT scan done which was interpreted as negative for cancer, but highly suggestive of early onset arthritis. No fun, but not so bad.

So I soldiered on, with the help of serious doses of ibuprofen. Except I didn't get better. After being bed ridden for the first month of 2016 (and in excruciating pain), it was time to try the hospital again. This time the CT scan told a different story. The back pain was associated with three collapsed vertebrae at the top of my lumbar section, caused by calcium leaching associated with multiple myeloma. The headline: I had cancer.

While I was pretty far down the rabbit hole by the time this got discovered, I was able to rally, get the cancer under control, and undergo a bone marrow transplant (aka stem cell transplant) that summer at Mayo Clinic in Rochester. That gave me a fresh set of downs to work with. 

{Here's how that works. Multiple myeloma is centered in the bone marrow. When you undergo a transplant, you are given a poison that kills everything in your bone marrow—cancer and all—after which your bone marrow is repopulated with your own stem cells, that have been carefully harvested right before you're given the poison. This sets the cancer back for about a year.). 

While there is no cure for multiple myeloma, there is a growing panoply of treatments available to manage it, and the strategy was to milk each of those as far as possible, essentially hoping that new treatments would come online faster than I would go through them.

It's a fascinating dance.

Where I Am Today

Now fast forward four years—an entire presidential cycle. When I came back from Mayo Clinic in August 2016, the prospects were bright for our electing the first woman President. Remember back then? My how things have changed. The prospects for my health have improved greatly, while the prospects for the country, sadly, have gone in the other direction.

In less than a week we'll be spinning the election wheel again, and we'll see what we get this time.

After completing the stem cell transplant at Mayo, my ongoing care and treatment were overseen locally, at St Luke's Hospital in Duluth. That went relatively smoothly for four years, as I worked through a progression of treatment protocols. First Kyprolis, then Ninlaro, followed by Daratumumab (I knew you'd want to know). When the effectiveness of Dara waned this past summer, I'd run out of FDA-approved options and needed to reach out into the quirky world of medical trials—where drugs being tested for FDA-approval are put through their paces. While expenses are 100% covered by the sponsoring pharmaceutical company, effectiveness is more iffy, and you can encounter some science fiction side effects. 

Still, it's better than dying, and being near Mayo ("near" being a relative term—it's a 3.5-hour drive one way from Duluth, if the roads are clear) means I have access to the latest trials. At the recommendation of my hematologist at Mayo (Dr Buadi) I opted into a trial for MEDI2228 (drugs aren't christened with their exotic names until they pass FDA muster), which I started Sept 1.

Although I only receive doses of the drug every six weeks (via intravenous infusion) I am required to travel to Rochester every Tuesday for data collection (mainly a blood draw and an eye test). Typically, Susan and I are driving seven hours round trip for about 30 minutes worth of medical work. It's a schlepp. (The silver lining is that there's a Trader Joe's in Rochester, and there isn't one in Duluth.)

—Fall Colors on Parade

One delight has been watching the autumnal foliage advance, week by week. We even got a decent look at the progress of the fall harvest. (Corn and beans both looked exceptionally good in the southeastern corner of the state.)

—Photosensitivity

I was cautioned at the outset that some users of MEDI2228 experience a marked sensitivity to bright light and increased susceptibility to sunburn. While none of that showed up at first, it gradually did, to the point where it was unsafe for me to drive after six weeks. Ugh. I squint so much that Susan refers to me as Mr Magoo. While it's semi-amusing that I wear a bill cap indoors (to deflect light from overhead lamps and bright sunshine), it's meant that Susan has had to handle the full load of seven hours behind the wheel every Tuesday.

When we had to negotiate an early snowstorm Oct 20, the return drive from Rochester took a grueling six hours (instead of three-and-a-half) and she was a wreck (though not the car) by the time we finally pulled into our driveway. Welcome to winter.

—Navigating the Warrens

Mayo is one of the largest medical facilities in the world, and it's the largest employer in the state of Minnesota. Over the years it's grown into an incredibly complex complex, with everything connected via tunnels, elevators, and overhead skyways, so that patients don't have to brave uncertain outdoor conditions going between buildings. It's easy to get lost—but you're never that far from an information kiosk, where friendly faces can point you in the right direction. 

After being in the maze every week for the last 10. I'm starting to navigate it like a veteran (and Susan knows her way around even better than I do). I can even find the Starbucks through the subway system, and know when to look up to see the awesome Chihuly blown glass sculpture suspended above the atrium of the Gonda Building.

As a former nonprofit administrator, I have an appreciation for administrative competency, and Mayo has it in spades. There are patients and medical personnel converging on their facility every day from all over the world, and yet, they know where everyone is supposed to be at all times. Appointments are sequenced to allow for the vagaries of doctor schedules and travel time between facilities, so that you never need to hurry, nor are you asked to wait that long. I am in awe of how they keep it all straight.

—Election Day

As it happens, my next trip to Mayo is on Election Day. As we should be finished there by 2 pm, we should be home by 6 pm—in plenty of time not to miss any of the Trump death watch, and the chain reaction down ballot Republican catastrophe. (When you weld your wagon tongue onto the back of a manure spreader, you shouldn't be surprised that you come out smelling like shit.)

The Road Ahead

Even as things get sorted out on the national level, it's not clear whether MEDI2228 will be effective in containing my cancer. If the marker for my disease (lambda light chain) does not decrease in the next couple weeks it will be time to look for another trial (hopefully one that's like Susan—easy on the eyes).

The good news is that all of my other vital signs are solid (heart, kidneys, and ambient pain level) so, while the doctors are closely tracking my progress, they are not alarmed. Thus, while I have no idea what's next, I'm confident that I'll be given the best chance possible. 

And my adventure continues.