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Journal entry by Erik Olin Wright

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.
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Journal entry by Erik Olin Wright

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. 

Wednesday:

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.  

Thursday:
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.

Journal entry by Erik Olin Wright

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.  
Thanks.  

Journal entry by Erik Olin Wright

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.

Journal entry by Erik Olin Wright

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.

Journal entry by Erik Olin Wright

I just discovered that I never posted this journal entry. I don't know how it works on the blog when one posts something from weeks past, but I will post it at than add a note in current time. [I now see that the posting just gets posted. So: what follows was actually written on Christmas day.]

It has been a while since I really felt able to write in a concentrated way, but real progress has been made on the various processes that were causing me to feel so badly the past week or so. In any case, I feel  that I have crossed the "enough energy & focus to write" threshold.
    
Once again, the military metaphor: there is the war against AML swirling around me, but also battles with other foes, some closely connected to the AML, other's not. We cannot effectively take on the main enemy without defeating the other forces. A war on too many fronts. Well for the moment we're making progress on the immediate threats.
     The big advance was on the bowel movement front. The standard treatment is an enema: A big bag of fluid is hung from an IV pole -- I don't know how much, but perhaps a liter. A long tube is  inserted (gently, gently, ever so gently) through the rectum and then as far up into the colon as possible. The liquid drips into colon and after a while, 20-30 minutes, this triggers the needed action. That is standard enema procedure. Works well against standard constipation. My situation is a more complex because the constipation it partially the result of obstruction from the spleen and liver enlargement (I just found out that that liver was considerably enlarged as well). So, the more refined strategy: I lie on a table equipped with a CT-Scan which helps guide the enema tube as deep as possible into the colon to get to the blockage. Not at all painful, or even really uncomfortable. The table itself, mind you, was very uncomfortable -- hard, wooden table with no padding. It was also very high off the ground -- maybe 4 feet -- and couldn't be lowered. The gurney couldn't be raised that high so I couldn't just scooch over from one surface to another. I got off the gurney, walked a few steps to The Table, and then with the assistance of a step, and hoisted myself up. It was hard. For anyone much more feeble than I, it would have been impossible. Once on the table, it was also supremely uncomfortable. I was asked to lie on my side, and the hard surface created a  pressure point on my hip. The staff were nice, but then scene also felt a bit like gnomes doing their bit in a dudgeon. One of them had a very aromatic curry for lunch. Anyway, the The procedure itself went smoothly, without a hitch, then back to the room to wait for a dump, which happened a couple of hours later.
  That was yesterday. Today I think my overall wellness has improved somewhat and things are on track.

Last night on Christmas Eve I happened to tune into the NBC Christmas Even service. The sermon was extraordinary. The preacher was an African American women named Jacqui Lewis. Here is how the sermon was described in the NBC press release:
 

       “At the center of the Christmas story is hope…hope which comes to us in the form of a vulnerable, poor baby. A child, not a king, changes the world. God appears to us as a marginalized, Afro-Semitic, Jewish child from Nazareth in Palestine. A child who grows up to teach us to welcome the stranger. How would our world be different if we loved our neighbors as ourselves?” asks the Rev. Dr. Jacqui Lewis, senior minister of Middle Collegiate Church.

      This barely captures the power of the sermon. Lewis talked about how the Christmas story was hijacked by imperialism and commodification -- power and greed. How once it became a state religion it was used for domination and exploitation. But, she says, the heart of Christianity is really simple. Strip it down to its core it is "Love. Period. The rest is commentary". Love, period, the rest is commentary. That is really potent o me right now. I see love at really a deep thread in my life, unifying how I teach, how I am a parent, my scholarly work and commitments to Marxism and emancipatory social science. To see this powerfully stated in a broadcast Christmas service moved me greatly. Of course, I can't accept all the God-talk, where good is a consciousness directly eternal all power Being. But when God is more elusive --God is Love rather than the God Of Love -- it is easier to swallow. Still, for me God  detracts from the central message: love. period.

Journal entry by Erik Olin Wright

Yesterday I made a wonderful discovery: I can dictate the stories and musings in the letter to grandchildren much faster than I can write them. I've developed a small tremor in my hands which increases the rate of typos. But even aside from that, Becky types vastly faster than I do. And my letter really is more like an oral story than it is like a written composition in many ways. So yesterday, l dictated the account of my falling in love and getting married to Marcia, and the beginning of the story of my going to Harvard and Oxford. Together those were about 6,000 words, which in one day was about 10% of what I had written since August. so I'll get a lot more storytelling done by dictating it. Also, it has the nice advantage that when there are visitors here it becomes a performance. And I'm telling stories to loved ones gathered around while Becky busily beavers away as my loyal secretary.  I'm sure it will need some editing after it's done, but it's great fun to tell these stories out loud to Becky and for anyone who's around to hear them as well. 

On a general health update, I'm actually feeling very good.  Mind you, that's partially because of 4 mg of steroids plus 2 Ritalin.  But they do seem to do the trick.  It also seems that the new FDA chemo that I've been on for the last 6 weeks is slightly shrinking my liver, which is giving me some physical relief. Since this is a brand new medicine, who knows what it might do.  It's nice to add a little uncertainty back into the story.  

My daughters have given me a wonderful gift, and have organized their lives so that they can stay with me until I die. This really brings tremendous joy. I'm at peace with the situation and will just take things as they come. I asked the doctors what it is likely to be like at the very end, and they said I would just gradually be sleeping more and more of the day and eventually drift off into a sleep from which I don't wake up.  

Journal entry by Erik Olin Wright

I have roughly three weeks left of existence. Three weeks. Let's call that January, 2019. January 2019: my month, my last month. There can be surprises -- both ways of course. My liver is the main source of leukemia's havoc. It is greatly enlarged now, filled with AML. This is why I need transfusions of platelets and red blood cells every day. The graft did not survive the return of AML so it produces no products, and the AML-clogged liver seems to be filtering out some of the transfusions so I am not getting full benefit from those. The result is that my platelets remain extremely low even after a platelet transfusion and my hemoglobin remains very low even after a hemoglobin transfusion. So, eventually these become too low to sustain life, or an opportunistic infection does me in. The doctors say "a few weeks" -- a nice surprise would be to slide into February; my birthday is February 9. We’ll see what happens.

This is all hard to take in fully. I am not in great turmoil over dying. I am sad about many things, desperately sad about those connected to my family. But I'm not afraid. I wrote about this early on; my feelings haven't changed: I am stardust that randomly ended up in this marvelous corner of the milky way where some stardust ended up in conditions where it became complexly organized in a way we term "alive." And then even more complexly— conscious stardust that is fully aware that it is conscious:   amazing -- stardust, inanimate products of exploding supernova, organized in such a complex way that it is conscious of its own aliveness and consciousness -- the greatest privilege in the whole, immense universe. It may be for a limited time -- this complex organization ends and the stardust that is me will dissipate back to the more ordinary state of matter. Nothing to do about that. As creative fanciful minds, we humans are good at inventing ways for our existence as conscious beings to continue after the stardust dissipates. It would be nice. I don't believe in that sort of thing, but I'll find out  by some time in February.

Journal entry by Erik Olin Wright

I decided to open this CaringBridge website to make it easier for people to get updates on my health status, but I still very much enjoy personal emails and letters rather than having all communications take the form of journal postings + comment threads. So don't hesitate to write to me directly at eowright@wisc.edu.  

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Erik’s Story
Erik is in treatment for acute myeloid leukemia. He is keeping this journal to share his musings on this experience as well as to update people on his condition.

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