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Journal

January
17
2019

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. 

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.

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