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Love and Sorrow

Hi everyone, 

This is Becky, Erik's daughter, writing.

Erik died just after midnight last night.

Marcia, Jenny, Michael Burawoy and I were all there with him. Yesterday morning, he had a fever and complained of pain; and things moved very quickly to a point where he was not able to be responsive.  We did what we could to make him comfortable, and the nurses and doctors at Froedtert were helpful, compassionate, and supportive. We spent time during the day and evening together reminiscing and laughing and holding his hand. We talked about how he would have had so much fun being there with all of us. Marcia finished reading him The Clearing so he could hear the ending.  We believe he was peaceful at the end.

We know how much this Caringbridge site has meant to him over the past months, and the community that has formed here is truly remarkable. It's been a great source of comfort and inspiration to read the comments here.  We are grateful for these ways that we get to continue to experience his great love of people, life, and the world. Thank you for being a part of that.

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On the Art of Goofiness

Recent blogs have been pretty heavy, understandably.  I'm in the last days of my life. That kind of focuses the mind around the biggest questions.  And that's been combined with some health crises that had such powerful physical impact on me that I needed to share that as well.  So while I hope the spirit of these blogs is not just relentless gloom and doom, they have certainly not been lighthearted. Now, so you can get a fuller picture of what my life is like, even in the midst of this, I thought I would share with you the section of the letter to my grandchildren that Becky and I have just completed, Becky typing and me dictating. This is a section of my letter to my grandchildren that describes an extremely salient aspect of my relationship to my children while they were growing up.  Which is to cultivate a kind of goofiness, silliness, joking around, a playfulness that pops up sometimes unexpectedly and takes many different forms. Some of this goofiness in a way milder forms I carry into seminars sometimes or other activities with students. but it was away  more intense when it was goofiness with my kids.  one aspect of this goofiness was storytelling.  now my stories weren't always goofy, they weren't always pure silliness, but I would say silliness played a part in nearly all the stories I'd tell my kids. I much preferred telling them stories to reading them stories. so what follows is an excerpt of my letter to my grandchildren, which contains some general discussion of goofiness as a thing we do together. and, in particular, the problem of how you tell spontaneous stories that are free flowing and come easily so it's not work on the part of the parent, it's fun. and the key to this is what I would call creating a gimmick, which is what I would call a story-telling machine.  you get a good gimmick, you get a gimmick in your head, and the gimmick basically tells the story. the stories don't need plots, they just need a structure that's funny and enjoyable. And a really good gimmick invites the kids to jump in, put their ideas into the fray, and contribute story ideas and little things that they want to see happen. well, enough introduction. Let's go to the excerpt.

Excerpt of letter to my grandchildren 

Goofiness as part of a way of life was really important to me and to my relationship with my children. Now, goofiness takes lots of different forms: there’s many ways to be goofy. A closely related term is silly.  It means having, as part of your way of life, something to counter the dead seriousness of our human condition, to make life fun and funny and not to take everything so seriously. And, for me, the idea of being silly as one of the ways you live in the world has always been an important way of expressing that need. I do take the world very seriously, I’ve devoted my career to social justice research and to mentoring my students and to being a loving and active father. That’s serious business. That’s taking the way of life as something important, and you have to devote attention to it. But there’s so much that’s hard in the world and difficult, and as you get older you get more aware of the difficulties, if you’re in our particular privilege condition where children can be shielded from some of the difficulties.  So goofiness for me has always been a way of lightening things up. It doesn’t mean “don’t be so serious,” it means, “in addition to being serious, have a lighthearted view of life as well as a serious one.”

So one way I express my goofiness is by telling goofy stories, but there were other ways. I think one that was sort of close to telling stories is that I would drive the kids to school through a wonderful little drive called the Edgewood Pleasure Drive, kind of a wooded drive on the way to Wingra School, and we would drive along this road which was canopied with trees, probably about a half a mile all together, and I would pretend that there were dinosaurs leaping out at us. I would drive at about 10-15 miles an hour and when a dinosaur would leap out, I would slam on the breaks, just abrupt stop, so everyone would jerk forward. I did it in a way that was safe--the kids were all buckled up--and clearly not at a pace that would cause neck problems or anything like that (at least I hope my judgment was good enough.) It would make the drive to school hilarious; I could get everyone in the car just completely cracked up with the fun of imagining there were dinosaurs leaping out at us. And it became very participatory, the kids would yell, “Oh, there’s a dinosaur!” and I would slam on the breaks. 

Or if we were having a dinner party, I would slip the lid of some pan under my shirt and take a wooden spoon and give myself a whack in the tummy and make a resounding noise and get the kids to just crack up. And I’d do that unexpectedly, it wouldn’t be part of a game, I could get myself set up and just whack. That was goofiness.

But I would say that one of the most important goofinesses was telling stories. They would be fun to listen to, and as the kids got older, they’d become more participatory and hilarious because of their contribution to the goofiness. Well, people would often marvel at how well I tell stories--I don’t plan them out, I can just tell them--but the key to my way of telling stories that makes it easy to tell a funny story is to have a kind of gimmick, a basic idea about some device that generates the goofiness of the story. The story doesn’t actually go anywhere--there are almost no plots to any of my stories, things happen, but they’re just kind of random and the kids just throw in their own randomness--but if you’ve got a good gimmick, the stories just kind of tell themselves.  So I had several of these. The earliest were stories that came to be known as the Josie and Jessica stories.  And the basic gimmick was that these two kids were buddies, and that Josie could turn himself into any animal he wanted, but it would only last a half hour and then he would turn back to Josie; and he couldn’t turn himself into the same animal twice in a row, and if he did it too many times in a day, he would get stuck for 24 hours. Which would create problems.  If you’re playing as a gorilla and you get stuck as a gorilla, and then you have to figure out how to live as a gorilla for a day.  So they would have various adventures, always around getting stuck, that is where the adventure would start.

When I had a good gimmick, I could basically tell a good story in my sleep. So we would be on a long road trip, I’d be driving and I could basically tell a good Josie and Jessica story, I didn’t have to plan it out. Or another gimmick was the search in the high sierras for the McMurtry Mine. Or our endless treks through the jungle on the Road to Mandalay, where Sam was always relegated to a donkey named Slow Poke and everybody else got to announce what animal they were riding.  Sam was just enough older than the other kids that I could tease him, he would be the butt of jokes, and he would realize it was part of the fun. If you have a ten-year-old and a five-year-old and you’re telling a story to both of them, you can have the adventure be that they’re riding through a jungle and the little kids get to announce their animals and Sam would always be on Slow Poke; and Sam would take the tease and be fully part of the fun of it, just enough older to realize that this made the whole thing sillier and it wasn’t that he was relegated to some lesser role.

Sometimes I would record these stories. The full set of Josie and Jessica stories and many of the Blizzard Epics and the search for the McMurtry Mines, they’re recorded and you can listen to them, and you can hear your moms yelling out things because I would say something would happen and Becky or Jenny would say, “No, no it didn’t happen like that.”  Becky especially at a certain age had a very shrill voice when interrupting my stories.  It would just be a kind of shriek.  Well, we have recordings of this and you can transport yourself back 30 or 40 years, all of this recorded in the mid 1980s, so a long time ago, and you can see what it was like for me to tell these stories with participation from your moms.  One set of these stories, the first set, I actually recorded when we lived with another family in Berkeley, in the early 1970s, the Zuckers. Now here’s a very sweet thing from that set of recorded stories: I recorded those stories, especially Josie and Jessica and the Gorilla.  Jonathan Zucker, who was not born when these stories were recorded, he was born in 1974 and I told them to his sister in 1972.  Well, Jonathan Zucker had a lot of trouble falling asleep when he was about 6, and his mom and dad thought my recorded story would help him sleep, and it did, it was kind of a magic bullet. He listened to that story, Josie and Jessica and the Gorilla, from around 6 til around 13, so for quite a long time, and he would fall asleep listening to the story.  Then when he was a little older, 15 or 16, he became a counselor at a summer camp in Berkeley called Camp Kee Tov.  And kids would be sitting around a campfire and Jonathan would tell this story, word for word, exactly how I told it, because he’d listened to it hundreds and hundreds of times, including one part in the recording where I sneezed--and when he got to that part in the story, he would sneeze as well. And to me this is this marvelous human phenomenon.  Storytelling around the campfire goes back to ancient times, it’s the way religious stories and myths and parables started, it’s what’s called an oral tradition, not written down, you couldn’t put a sneeze in a written down story in the same way, but these stories affirmed the value and sometimes the goofiness of life. Jonathan Zucker would tell the story to the camp Kee Tov kids, and he would sneeze at exactly the place I sneezed twenty years earlier. To me that’s a wonderful and deep illustration of the continuity over time of what it means to be human and live together in community and transmit these cultural phenomenon.    

Now to really have a story, a child must of course have language. And language kicks in for children at different times; of course, children can understand things before they can speak, but to really tell a story I’d say a child has to be at least 3 years old, and then it really kicks off around four, four and a half, and that’s in my experience when a child really gets into the story itself.  But I’ve been thinking about what gimmick I wanted for you. I didn’t just want to retell the Josie and Jessica stories to Vernon and Safira, and then Ida when she came along. And I had this basic idea of a world in which everyone is a witch, and they just don’t know it. And a witch in this world is someone who has a special power to realize this potential, something they’ve dreamed about.

So here’s the first episode of Safira, Vernon, and Ida: the World’s First Tripulo.

Now, you may not know it, but we live in a world where everybody, or at least almost everybody, turns out to be a witch. Now, what’s a witch? Witches aren’t bad things, they aren’t evil, they’re just ordinary people who have a special witchly power. They have some sort of power which they might not even know they have. Everyone has a special power, but they might not know they have it, they have to discover their special power. Well, this is how it happens: you have to, at some point, say out loud, “oh I wish I could do x” I wish I had the power to do this, to solve this problem, had this skill.  Well, if you say this and it’s not your special power, nothing happens.  If you want to be a great dancer and you’re in ballet class at age 10 and you’re stumbling about you can’t do anything and you say I wish I could be a great dancer and it’s not your witchly power, nothing happens.  But if you happen to say—outloud or in your head—let’s say you’re having a music lesson and you’re stumbling on your violin over a difficult passage and you say, “I wish I could play the violin beautifully, like Itzhak Perlman” and that power happens to be your witchly power, suddenly you have it. Now it turns out that all of the great musicians of the world and all of the great architects and ballerinas and authors, they all had that as their witchly power and at some point longed for it and said it out loud in their heads. And that triggered getting over the hump and activating the power. They still had to put in the effort, to go from a person with witchly power be a fabulous musician to actually being a fabulous musician, but that’s how it started off. And that’s how witchly powers work for a singulo, a singulo is someone who has the power all on their own. So most people are singulos.  And there can be powers that aren’t about being a world famous musician, a power could be being a fantastic breadmaker—someone loves making bread, they do it a lot, but it comes out kind of tough, and one day they said, “I wish I could make beautiful bread,” and suddenly you can make beautiful bread like a professional baker. 

Mostly the powers that singulos have are good, life-enhancing powers, but they can occasionally be dangerous. You could have a person who says, “god, I really wish I could see through walls,” and that turned out to be their singulo power. Well, that could be used for all sorts of nasty purposes. Or, “I wish I could be super strong and lift up cars.” Well, lifting up cars could be good if someone is trapped under one, but you also could do a lot of damage.  But anyway, singulos have isolated individual powers.

Duplos have an added complexity: you can only activate your power if you’re touching another duplo who has the same power and you say it at the same time. Well, how likely is that? You could have two duplos who both want to fly, but how likely is it that they’re going to bump into each other, be touching and at the same time say, “I wish we could fly.” So there are duplos, but very rarely do they discover their powers.  And there has never been a tripulo, which would be three people who would get together and have the same tripulo power and say it out loud at the same time.

Well, this is a story about three little witches. Fantastic people. Cousins and siblings. The eldest of these witches is a little girl named Safira. She was born in Australia, but comes back to the United States when she’s three and a half years old. A live wire, buzzing about in the world, filled with energy and good cheer and fun. She has a cousin named Vernon, five months younger. And then along two years later, two and a half years later, comes the baby of the three named Ida. They don’t live in the same town, but they live close enough that they see each other from time to time. Well, the story begins when Safira is about five years old or so and Vernon is four and a half and little Ida is two. One day, visiting in Philadelphia where Vernon lives, Safira and Vernon are playing in the big open living room space in that house. And Safira runs to Vernon and tackles him and they go tumbling to the floor and Safira yells out, “Oh, Vernon! Wouldn’t it be fun if we could fly?” and Vernon thinks, “Yeah, that would be really fun,” and they’re holding onto each other because Safira had tackled Vernon, and they suddenly lift off the floor together. Whoa.  “Whoa, look what happened!” Safira says. They let go of each other, they’re at the ceiling of the house, and when you break the connection, the power disappears; you don’t get into free fall, it’s a gentle dissent and you can guide yourself down. So it’s not particularly dangerous, but you have to be holding onto each other, touching—you could be holding hands, holding feet, entangled in some way, but you have to have physical contact for the power to work. So Safira and Vernon are zooming around the house, learning how to do it: it’s a skill. They’ve got the power now, but they have to learn how to accelerate, how to avoid objects, how to move a foot for some directionality, and so forth.  They go into the kitchen where their moms are making dinner, and their moms see their children on top of the ceiling and they say, “Whoa, whoa come on down.” They’ve never seen this before, they’ve never seen two kids zooming around in the air. So Vernon and Safira let go and drift down to the floor.

Well, you can imagine the moms are pretty concerned. This looks like great fun, but what would happen if you were outside? Would you just go up and up?  You could get lost. They had to understand what was going on. So they went down to the public library in Philadelphia to see if they had any information about people who could fly.  And they did find in the corner of the library a little book that said if you wanted to learn about people with special powers you had to go to a library in Edinburgh. So Jenny and Becky went off.  Adriano and Mark looked after the children in Philadelphia, and Jenny and Becky got on a plane and flew off to Edinburgh.  And they found the book that gave all the information about singulos and duplos.  There wasn’t much information on duplos, because they’re very rare, but they got the basic picture. They went back to Philadelphia and sat the kids down and said, “Look. It turns out that you are a very special kind of person called a duplo. You’re young. We don’t know how this is going to develop, but let’s just set some rules about this. First of all, if you’re going to do it, you have to tell us--just don’t go willy nilly flying off into the sky, let’s just take it slow and always tell us about it. Secondly, we’re a little concerned that if you’re holding hands and flying high in the sky you might let go without meaning to, and even though it’s not dangerous because you don’t go into free fall, you could get lost. So we’re going to design a set of garments in which you’re attached through the garment--so it’s by one foot maybe, sweaters or a pair of pants attached at the cuff, but you need to have these special garments if you’re going to fly, and let’s see if that works, if that’s enough of a connection to make sure your powers are activated; it’s just a little safer.”  And they all had a very good discussion. The kids were excited, of course. It was tremendous fun. And then Jenny and Becky said, “The last thing is, we want to go to a safe place where we can practice these skills, where we can really see how these develop and you can figure out how to do it.”

Well, time went on, they were five and then they turned six and then they turned seven.  And all this time, Ida would tag along but without any special power, she wasn’t part of the game. And one day when they were outside at a state park, little Ida came up and said, “Do I have any special powers? You have so much fun, and I get to watch and tag along, but can I play too?” And it occurred to Safira and Vernon that, well, they had never tested it out. They hadn’t held on to Ida and said, “Okay, Ida, say outloud, ‘I wish I could fly,’ and we’ll all say it together, maybe she has the same special power.”  So, they didn’t tell their moms and dads that they were going to try this out. They were in a big field. They were wearing a garment where they were attached at the ankles, loose and comfortable, didn’t interfere with the fun. They got together, all touching, and Ida said, “Oh, I wish I could fly.” And Vernon and Safira said the same thing, “we love that we can fly and wish that Ida could fly with us.” And they shot up into the sky like they were rockets. They were turbocharged. They were like airplanes, they could zoom incredibly fast. Vernon and Safira could control their own powers enough as duplos that they immediately put the breaks on. But there they were: the world’s first tripulo. Flying around in the sky together was exhilarating. But Ida had no skill yet, she didn’t know the rules, and at one point she just let go.

Now remember, letting go isn’t dangerous, but in this case it just turned off Ida’s power without turning off Safira and Vernon’s, because they were still attached to each other. Vernon and Safira could still fly and guide their flight; all that Ida could do was just drift down without any power, like a glider would. Safira and Vernon chased after her, now with diminished power.  They wanted to rescue her, but it was a windy day and they lost track of her at one point.  Ida drifted down to the side of a kind of cliff, they were in a sort of hilly area, where there was a big tree protruding from the cliff, in which there was a large eagle’s nest. And she landed, kerplunk, in the eagles’ nest which happened to have three large baby eagles in it.  Well, the mama eagle soon arrived and saw this strange bird in her nest.  Now you might think the mama eagle would get upset about this and might be aggressive, but no, she was a very sweet mama eagle, bringing back bits of meat for her babies, and she thought, as a gracious host, that she’d feed the new odd eagle with no feathers first. And she tried to stuff this raw meat down Ida’s throat, which Ida really didn’t like. So Ida was fussing with this eagle—“Get away from me, stop doing that, no, yuck, I don’t want that, ugh”—and finally Vernon and Safira, flying around looking for Ida, spotted her in the eagles nest and they swooped down and rescued her, and continued on their way. They held on to Ida they told Ida, “You can’t let go of us.” They were going down to the field, next to Lake Michigan where their parents were waiting. “Just stay calm, hold onto us, and we’ll make this dissent without any further problems.”  So they swooped down and ended up back with their moms and dads. 

It was a very warm summer day and all the sharks of Lake Michigan were gathered in a big party. This was shark day in Lake Michigan, and it turned out they were gathered right next to where Becky and Jenny and Adriano and Mark were waiting for the threesome to come back. So the threesome lands, and Jenny and Becky especially were very relieved. They were kind of excited to learn that Ida had the same powers that her cousin and sibling have, so that they can be a tripulo, and thought of all the fun things they can do together.  Well Ida, when they landed, they were hot, and immediately she jumped into Lake Michigan for a swim, not realizing the lake was full of sharks at that point and the sharks happened to be gathered right where they were. She was a pretty good swimmer for a five-year-old and suddenly  she bumped into a shark. These weren’t aggressive sharks, they weren’t particularly dangerous, but they started playing and flapping around and bumping into each other, and nobody on land knew they were friendly sharks.  So Vernon and Safira said, “We’ve got to get Ida out of there,” and they said “To the rescue!” and they jumped into the water as well to rescue Ida from the sharks that she was playing with.

They were in the water, a bit away from shore, and they grabbed Ida, but Ida didn’t want to go out.  And Ida said to herself, “Wouldn’t it be great if I could swim like the sharks.” And it just so happened that Vernon and Safira were kind of thinking the same thing, “Wouldn’t it be great if we could swim like sharks.” They were all holding onto each other and they said it at the same time and whammo! They could swim like sharks. My god, they could swim way better than sharks. They just discovered that their special power was not specifically flying, their special power was that they could do in a supercharged way any form of mobility. They could run like a rabbit. They could hop like kangaroos, they could swim like sharks, they could fly like eagles. They had the super power of mobility. Fancy, exciting mobility. And this opened up a world of play and adventure that would keep them having adventures for years and years to come.

And that’s the end of the first episode. 


You can see how that’s a story generating machine. There’ll be different occasions for different problems to arise. The foundation is laid. So I won’t be there on a road trip or around a camp fire or at the cottage to pursue this, but maybe the template will survive and other stories will get generated by it.

So that's the excerpt.
Mini Medical Update
Mostly I'm feeling fine.  No dramatic new developments on the official health front. The only new symptoms are that I had a couple of episodes of gasping for breath, where I simply could not fill my lungs. The episodes lasted maybe 15-20 seconds and were pretty scary.  They were triggered by almost no effort, standing up and pivoting, basically.  But this is to be expected it.  It's one of the things that happens in late stage AML.  And I'm okay.  I'm okay. 


Clarifying my final weeks

Yesterday, I had a bone marrow biopsy to see if there were any prospects at all of a rejuvenation of my bone marrow.  Alas, there is not. My bone marrow is virtually empty and what cells are there are to a significant extent blasts.  Dr. Michaelis told me that even if we were to wipe out the remaining blasts, I would be far too weak to even attempt another transplant.  A transplant is off the table, and a transplant was always the only prospect for a cure. The only thing that's keeping me alive right now are blood transfusions of red blood cells and platelets.  All of my platelets and all of my red blood cells come from donors, from ordinary blood donations. Unfortunately, the way this disease works is that gradually my liver especially, to use Dr. Michaelis' expression, chews up these transfusions, and you get increasingly less benefit from any given unit of blood.  And at some point, no benefit whatsoever.  You get a unit of blood, but your hemoglobin will not rise.  And when that happens, you basically cannot sustain life any longer.  So the scenario is basically when you approach that period--it doesn't happen abruptly, it happens over the course of days and weeks--you sleep more and more, your body is getting less and less oxygen, 15 hours a day, 18, 20, 24; you're not in a coma, you can be roused, have sweet words of love, maybe even more extended human communication than that.  But then eventually you just begin to sleep all the time and, I assume, fade away.  That would be the AML equivalent to dying in your sleep.  You just, at one point, sleep 24 hours a day and don't wake up.  But there are other potential scenarios as well.  I have two infections, both of which could kill me, and those could blossom out of control and kill me one day to the next, blindsided.  The doctors are doing everything they can to manage the infections and I feel my fevers are under control and that basically that's not likely to be the way that I die. But who knows. Maybe I'll be surprised.  Marcia will update everybody when the time comes.  

    So, dear friends, what we've known for a while is in fact the case.  I have a very limited time left in this marvelous form of stardust which I've been talking about over the past few months. I don't feel any dread.  I want to assure you that I don't feel fear about this.  It seems very petty to complain about the eventual dissipation of my stardust back into the stardust of the cosmos after having lived 72 years in this extraordinary form of existence that very few molecules in the entire universe get to experience.  Indeed, to even use the word experience with respect to my stardust is amazing.  Atoms don't have experiences.  They're just stuff.  That's all I really am is stuff.  But stuff so complexly organized across several thresholds of stuff-complexity, that it's able to reflect upon its stuff-ness and what an extraordinary thing it has been to be alive and aware that it's alive and aware that it's aware that it's alive. And from that complexity comes the love and beauty and meaning that constitutes the life I've lived. And to top it off, I'm in this massively privileged corner of this human stuff that's managed against all odds to not live a life of fear and suffering from the cruelties of our civilization, that has never felt the fear of hunger, the fear of bodily insecurity in my neighborhoods, that has had the resources to raise my wonderful family, my children, in an environment where I think they too have felt physical security and the basic things you need to flourish.  So there you have it.  I am among the most advantaged, privileged, call it what you will, stardust in this immensely enormous universe for 72 years.  And so it will end.  But I knew that, at least from age 6.  This is a few years earlier than I'd hoped, but no complaints.  No complaints.  And I suppose, to carry on this reverie a little bit longer, I suppose to top it all off, sometime in my late teens to early twenties, I decided to take advantage of this extraordinary privilege that I had, not to live a life of self-indulgence but to create meaning for myself and others by trying to make the world a better place.  The particular way in which I did this of course is historically bounded by the intellectual currents and turmoil of the late 60s and early 70s.  I don't think that means it should be thought of as merely an effect of that historical moment. I think my dogged attempt to revitalize the Marxist tradition and make it more deeply relevant to social justice and social transformation today is grounded in a scientifically valid understanding of how the world actually works.  But without being embedded in a social milieu where those ideas were debated and linked in both sensible and misguided ways to social movements, I would never have been able to pursue this particular set of ideas.  But I was enabled, and it's made for an incredibly meaningful and intellectually exciting personal life. So no complaints. I will die in a few weeks, fulfilled.  Not happy that I'm dying, but deeply happy with the life I've lived, and the life I've been able to share with all of you.

One final thought on this meandering theme: in November of 2015, I was hit broadside by a car while biking.  It would have taken very little change in what actually happened to turn this from a significant injury into a death, from one moment to the next I could be here and gone. People sometimes speculate on what's the best way to die: suddenly or in your sleep, bang you're dead; or drawn out over an extended period of time.  For me the answer is unequivocal: the death I'm having is the death I would choose.  but there's one other little nuance of this way of dying that I didn't really understand beforehand.  Often when people talk in a medical context about dying, when the context is the kind of death I'm dying, drawn out, people talk about the trade off between quality of life and extension of life.  Well, what I've come to realize is that when you're really sick, when the pain of your illness takes over your life, or even when, as was the case last night I had uncontrollable and really hurtful coughing that kept me up most of the night, when you're no longer in your body in a comfortable way, that's not just a question of quality of life, that is a question of life. Five weeks of living the way I felt last night when I was coughing uncontrollably is not just some trade off with two weeks of living without it.  Five weeks of living like that is not living.  So I've told the doctors that from here on out, my priority really is comfort.  Not being drugged so that I'm loopy and just feeling physically comfortable, I want to be mentally comfortable too.  I want to connect and be able to continue writing this blog til the end.  But my priority is to be present.  And then let the length be what it is.  It will end soon, hopefully it will last as long as possible, but only in the context of being truly alive.


P.S. to last blog

We inadvertently forgot to include the link to the video.  We've now added it to the last blog.  Enjoy!


A Week

Follow-up to blog on generosity and kindness:

I have been having further thoughts on my blog about kindness and generosity.  There has been such an outpouring of appreciation from my students about these as qualities of my mentoring.  But I don't think most of my students fully realize how much I have gotten from them.  I may be generous and kind; true.  But I flourish in my own work and development because of their hard work and the seriousness with which they engage their role as students.  

Monday: Gathering of students in my hospital room:

Monday of this week was an amazing and profound experience for me.  I had given up trying to coordinate visits because it had become too complicated for me and just told people to come whenever, so that if people overlapped, it didn't matter.  On Monday, it turned out that about 25 former students and a few present students showed up in the late morning and afternoon, including a former student from Taiwan from the 1980s who brought his two daughters to meet me and students from every other decade.  I told stories, they asked questions. At the end of the afternoon, I was sitting in a wheelchair near the door to my hospital room, and one by one, the students would come and kneel down to my level to say good-bye.  It was truly beautiful and deeply meaningful for me. 

Tuesday: Thwarted Plans: 

I think I may have had the shortest discharge from a hospital on record on Tuesday.  The plan had been for me to be discharged Tuesday by early afternoon to move back to the apartment to spend a few hours with Josh Whitford, Gianpaolo Biaocchi, and David James.  I was indeed discharged, and managed to successfully get back to the apartment without too much hassle.  We had been able to transfer apartments from the second floor to the first floor.  In the end, I don't think I would have been able to manage the 14 stairs to the second floor;  or at least it would have been a very big challenge.  Along with the discharge procedures, we met with a hospice organization that would begin hospice services at our apartment on Thursday. It was really very reassuring for me to become part of the hospice program, which would basically provide the kind of more intensive nursing care and other services that I was familiar with on CFAC.
Josh had brought a fantastic video which begins with me giving a lecture on the shmoo and turns into a hilarious reading of the shmoo story by former students.  What a wonderful, wonderful tribute. Here is the link: https://drive.google.com/open?id=1NmxmSSd_KkWfMRMh9t3z_2k5eakfDuw2
As the afternoon wore on, of course I got tired;  and basically when they left, I crashed.  So far, so good.  In the course of Tuesday night, we knew something was not good.  The plan had been for me to go to Madison on Wednesday, to say good-bye to the department and to do a bit of preliminary work in my office to get things organized to make it easier to eventually clean it out. 


We took my temperature Wednesday morning and I had a significant fever spike of 101.9.  So we called the clinic and they told me to go to the day hospital at Froedtert.  
Going from our apartment to the day hospital turned out to be a  horrendous and difficult task.  I literally was unable to help in any way getting from the house to the car.  I was a sack of potatoes for Adriano, Marcia, and Becky.  Getting from the car into Froedtert was extremely difficult and painful.  
I am sure that there are better techniques for doing this, but we sure didn't know them.  It was bitterly cold for me even in the parking structure at Froedtert Hospital.  I had been out of the hospital less than 24 hours and then was readmitted.  Unfortunately, I lost my room in CFAC and had to accept a room on a general cancer ward in the hospital.
My room is about a third of the size of a CFAC room, but the staff and nurses are good and kind and responsive. I think things will be okay, but I'm hoping to move back to CFAC in the next couple days.  I'm on a waiting list to get a bed in CFAC and I suspect that will happen.  
It turns out that I have two infections, one viral, one bacterial, and they have really knocked me out. And also made me acutely aware of my level of vulnerability.  I realize that how much time I have left is quite uncertain.  If I manage to get on top of these infections, I could go for many weeks I think. But of course an infection can get out of control, in spite of the best care that you can imagine, and then I could be gone one day to the next. And I think this sense of uncertainty feels different from what I felt before.  It seems silly at this point to talk about goals and things I still want to accomplish, but in these last weeks I really want to finish the letter to my grandchildren.  I think I can with my speed demon Becky as secretary and my new-discovered ability to dictate text rather than just write it.  So I'm hoping to be able to tell the stories of raising Jenny and Becky and what it has meant to me as an experience and as a font of meaning in my life to become a parent. 
I adore this blog, which has become a kind of centerpiece in my life, it really has. It's helped me understand much more deeply than I think I could possibly have done otherwise, what it means to me to be dying. And the fact that I can share this in a simple way with the people who I love and the circle of students and friends and colleagues and apparently people I don't even know--that I can share this in a way that's proved to be meaningful to them has been such a gift.  I think caringbridge is just an extraordinary platform, enabling in this case a life-enhancing mode of communication, which, for me anyway, has made this experience different.  in the absence of caringbridge, I probably would have written notes, kept some kind of journal of my experience because that's what I do, but it wouldn't have any of this richness to me and of course I'm gratified that it's important to many of you as well.  

Today I feel a little bit better than yesterday.  The extreme weakness persists, and physical therapy will work with me to try to stabilize that. but basically until the virus that I have is under control and the bacterial infection is eliminated, I will continue to have this general problem of extreme weakness.  My expectation at this point is that I won't get another attempt at a discharge to the apartment.  That I'm simply too precarious at this point. and even when I've overcome these immediate infections, without a well-functioning or even modestly functioning immune system, it's better to just stay within the confines of the hospital.  But who knows.  There are always surprises.


Message from Marcia about visits

Tomorrow, Tuesday, Erik is being discharged from the hospital.  We will be living in an apartment close to the hospital. Discharges and moves are unpredictable, so tomorrow will not be a good day for spontaneous visits.
Wednesday, Erik is planning to be in Madison all day, so no visits that day either. 
Becky has volunteered to do some basic scheduling of visits because the apartment is small and it is best to keep gatherings from getting too large. 
Therefore, if you would like to visit, please text (not call)  or email Becky. Here's the contact info:
Email: rebsonwright@gmail.com  Cell for text:  608-695-3640.

Erik says this is not meant to reduce visits, just to make sure people will fit in the apartment.  


Reflections on generosity and kindness

I have been deeply moved by the way so many people have used the words "generosity" and "kindness" to describe me and my impact. Generosity and kindness are obviously virtues; the world would be a better place with more of both of these. But sometimes when people write so graciously and lovingly about my personal generosity and kindness they make it seem that these are not just admirable traits, but that they somehow involve sacrifices on my part, that being kind and generous is somehow heroic. It may be a bit unusual to find in an academic of my stature with these traits, but there is nothing heroic about this, no sacrifices. I feel that I live a more joyful life because I live this way.

I put a lot of effort into end of semester retreats with grad students. Yes, this is effort to be sure, but it helps foster a sense of community in which the dead serious work of sociology exists alongside of love and fun, where the competitiveness of academic life is a bit dampened. That is a better life for me as well as everyone else. 

I live in a big house with spare rooms. Often we have people staying in one of those rooms. This does "count" as generous since under the rules of private property I "own" this space which gives me the right (and the power because the right is so heavily enforced by the state) to exclude anyone from access. But having people use the space to facilitate their lives contributes to a reality of living in a caring community which is, for me anyway, just a happier, more meaningful and fulfilling way to live, not a sacrifice. 

Of course there are times when kindness and generosity take time, and given time scarcity that can be experienced internally as pressure and sometimes burden. But this is kind of the pressures and tradeoffs with parenting. This doesn't make generosity and kindness to one's children an heroic act of self-sacrifice. It makes parenting an act of love, in a context where there are too many things to do.

I know philosophers talk about character and personal virtues, and about cultivating one's character, and of course sociologists talk about socialization and norms which bear heavily on these issues. So does my thinking about real utopias, since one of the tasks of transformation and social emancipation is making a world in which it is easier for people to be kind and generous.


Twists and turns -- in paise of uncertainty

I'm sorry it has been a few days since my last blog. Partially this was a few days of feeling crummy, and then tons of visitors. Know this: If there is some dramatic turn for the worse, we will let you know on the blog, so "no news is goodish news" -- things are at least more or less stable. And is if there is some wonderful news, I'll let you know that as well.

The doctors came in for their  daily consultation yesterday with a much more positive report. No more talk of "a few weeks left." While there is no mention of a long term or "survival", they spoke of a possible discharge from the hospital next week. I have apparently responded well to the new chemo I am on -- my blood numbers are good and my enlarged liver has shrunk a little. The result: I feel good, genuinely good -- no pain at all, modest energy, at what I call at ease in my body. Some of this is the steroid, I am sure, and some the Ritalin I am taking. But from whatever the source, I will take the good physical sense of well-being.

I am having a ball writing my letter to my grandkids. The discovery that (a) I can dictate text pretty well, especially stories/memories, and (b) Becky types @90 words a minute, almost without error, has meant that much more gets written each day: I have written 27,000 words over the past five days, while between August and the end of November I wrote about 55,000. This has made possible a delightful entertainment when we have visitors. They sit around informally, I tell stories from the 1960s and 1970s, and Becky types like a maniac. The other day I recounted the story of falling in love with Marcia, surrounded by people -- friends, students, family -- who love me. I found it wonderfully moving and fanciful.