Habitus in the fall

Hey Ya'll - happy fall! By far, my favorite season. These days, clear, crisp 60 degree days, cool, 40 degree nights, perfect. Rich colors, rich air. School is well underway, C and I are looking at houses, a time of change. It's been a very busy few months. Health-Wise everything is going smoothly - dialysis has become part of my routine. At first I was pretty hesitant to have any visitors there and I turned down some offers, but I changed my mind on the matter. It still isn't a great place to visit, but if you're interested in what this aspect of my life is like, I'd love for you to stop by for a chat. I struggled with sharing myself on dialysis with folks, like seeing someone right away in the morning before being ready for the day. After spending some time there, now I kind of want to introduce all of my friends to the staff at the clinic. As accustomed as I am to spending afternoons there, I anticipate the spring. 

Day by day I get closer to being eligible for a transplant. Mostly I try to not think about it. It can be challenging to embrace the life I'm living now, even when I'm able to do pretty much anything I care to do, knowing that I will feel healthier and have more freedom in a few months. Mostly I still resist knowing myself as a person on dialysis, or rather the baggage that attends to a person being on dialysis. There's one or two other young guys (mostly guys) at the clinic, but generally it's folks I don't consider akin to myself. I wrote a paper for a course on Sociocultural Theory I took in the spring, finally finished late August, about this disconnect. That continues to be a challenge. Another thing I try to not spend much time thinking about is the donor process - but I'm gonna put this out there once more. There are a number of wonderful people being tested, but nothing is set. If you're interested in or curious about donation, please give Suzanne a call (612-863-8886). 

Reviewing the last few updates, I can say that my life feels much less like a shit show, which is nice. I just got a flashy new bike, and I've been biking to school - and occasionally dialysis. I think I'm the only person to bike to dialysis. Maybe ever. Still great being alive. I posted the paper below - as always I'm curious to hear what you might think about it, and as always I'm self-conscious that it's not as great as it could be. Thanks for reading! 

My dentist, a family friend, told me at my last check up that I looked great, never better. He said this because he knew I have a chronic illness – kidney failure – and to him I looked good. He said this to me a few months ago as my transplanted kidney was failing and I was sicker than I had been in 10 years. But he was right; I looked great. I’ve always been able to pass as healthy, oftentimes even to myself. Yet every time I share my health history, even with doctors, I am reminded by their reactions of how extraordinary my life has been.

For years I inhabited the social world of a healthy person. There were small tells; a conservation of movement, a deeper patience, along with periodic hospital stays, but these hardly registered even to those who knew me well. A few months ago my transplanted kidney failed and I began dialysis. For the first time in ten years I felt off, un-centered – tired but not sleepy. I wrote the following in a blog entry, “I had a hard time making decisions and wanting things, or knowing what wanting things meant. … I would say things that weren’t true, which I would call ‘jokes.’ It felt like someone else talking. Sometimes I would feel cornered. I was more just a body, ungoverned, lurching from thing to thing without consideration.” I was misaligned; my sick body didn’t make sense in my healthy social world.

Pierre Bourdieu describes habitus as a way of being in relationship with the world (Bourdieu, 2000). According to Bourdieu, social influence inscribes itself upon the habitus, which he describes as “a memory pad” (Bourdieu, 2000, p. 141). Our habitus responds to and is created by our social environment; it is an implicit collusion of those with similar conditionings (Bourdieu, 2000). As a person passing as healthy to everyone including myself, my habitus formed similarly to the healthy people around me. I understood myself as someone who could move and work as I liked. My hopes for my life mirrored the hopes of the healthy people around me.

Because I was able to enact a healthy lifestyle, my habitus as a healthy person was comfortably situated. Happiness, according to Bourdieu (2000), is the alignment of our surroundings, or habitat, with our habitus.

Since the desire for fulfillment is roughly measured by its chances of realization, the degree of inner satisfaction that the various agents experience does not depend as much as one might think on their effective power in the sense of an abstract, universal capacity to satisfy needs and desires abstractly defined for an indifferent agent; rather, it depends on the degree to which the mode of functioning of the social world or the field in which they are inserted enables his habitus to come into its own. (p. 150)

I understand sickness and wellness as an axis of social life. As a straight, cis, white, male, and, importantly in this context, healthy, person living in Minneapolis, my habitus has aligned smoothly with my habitat. When the body and society align, the body doesn’t need to want, it just does; it moves and acts knowingly within its social bounds. Living was easy. Sure, I wrestled with the ordinary dilemmas of life – I should exercise more, relationships can be hard, what movie should I watch – but I did not encounter the world as a foreign place.

Bourdieu (2000) first understood habitus where it was misaligned with its habitat; colonial North Africa- for example (p. 159). Habitus is an embodiment of social influences, but it also has inertia, and can lag in a shifting environment. Environmental changes can challenge us. “In crisis or sudden change, especially … too-rapid movements in social space, agents often have difficulty in holding together dispositions … some of them, often those who were best adapted to the previous state of the game, have difficulty in adjusting to the new established order” (Bourdieu, 2000, p. 161). My situation is the reverse of this – my social order didn’t change, I did. Still, I, as Bourdieu, became most aware of my habitus when it fell out of alignment with its environment.

Falling out of alignment was difficult for me in part because the shift didn’t, on the surface, seem dramatic. I spend 14 hours per week on dialysis, but it is not painful. I experience less swelling in my legs, and I feel better than I did before I started. I have a stronger appetite and I have more energy. Yet I feel paralyzed; the world has become a foreign place.

I had been on the lookout for certain types of struggles while at the mercy of the medical institution – surgeries, tests, painful procedures, waiting rooms. What laid me down wasn’t any event or episode, it was the dull recurrence of dialysis, and the minute, insistent physicality of kidney failure. As Bourdieu (2000) wrote, “it would be wrong to underestimate the pressure or oppression, continuous and often unnoticed, of the ordinary order of things” (p. 141). Habitus constructs the world by orienting itself to it, by responding to it. My sickness oriented me to the world in a certain way. My response to this health trauma displayed itself in my day-to-day physicality; how I entered a room, or how I sat in a chair. Again, Bourdieu (2000):

It is likely that those who are ‘in their right place’ in the social world can abandon or entrust themselves more, and more completely, to their dispositions (this is the ‘ease’ of the well-born), than those who occupy awkward positions, and the latter are more likely to bring to consciousness that which, for others, is taken for granted, because they are forced to keep watch on themselves and consciously correct the ‘first movements’ of a habitus that generates inappropriate or misplaced behaviors. (p. 163)

As a healthy person I was able to move without thinking. I would casually bike 10 or 15 miles to a social event, or run up a flight of stairs. I was invited to a beach recently and declined, for no reason other than I felt disembodied. As I became a person with kidney failure, action without thought seemed impossible. I struggled to shift from a person who biked and stayed out late to someone who drove and went home early. Even moving from the couch to the kitchen, or deciding whether or not to wear socks required consideration. As my habitus shifted against my habitat, my struggle was not against an illness; it was determining what to do next.

There are obvious pedagogical implications to Bourdieu’s work with habitus. Students struggle as much with when to raise their hand as using correct punctuation. The ‘how’ of schooling: how students move in the hallways; they interact with their teachers; how teachers address the students; these questions are as relevant as the learning content.

Schooling is not a neutral environment. It is a specific habitat – content, physical and social structures, and learning outcomes – which are often white, middle class, hetero and euro-centric (Barton & Hamilton, 2000; Gee, 2009). Students whose habitus – ideological backgrounds, learning styles, social mechanisms – misalign with this habitat can be positioned as at-risk or failures (Gee, 2009; Richardson, 2003; Street, 2003). I believed that I could maintain my comfortable, dominant access to my healthy habitat even as I lost the healthy habitus that allowed me to enjoy it. There is power associated with being healthy, as there is with being white, male, cis, etc, and I didn’t recognize it. That is the clearest mark of privilege. As a high school teacher, it is incumbent upon me to recognize the same power differential in my students whose habitus similarly misaligns with their habitat, and work to create an environment where they can more closely align. Like me, even students who look great could be struggling.

A Leaf on the Wind

So I’ve been on dialysis for a little over a month. It’s been pretty smooth, about what I expected. Since I wrote last they switched from my shoulder catheter to my arm graft, which has healed pretty well. It looked kind of brutal for a while. I have pictures. J

I’d like to take some space here to share how this has been a particularly hard spring, and to try to articulate how dialysis, which is pretty much just sitting in a chair for about 4 hours, can be hard.

They (at dialysis) started using the graft in my arm mid June, and everything went very smoothly. They use 15 gauge needles, which aren’t the smallest needles (I think the needles they use for blood donation are 18 gauge?). But the sticks aren’t too terrible, and using the graft meant I could have the should catheter removed and could finally take showers. Lovely lovely showers. Like so many other things, showers are best appreciated in their absence. I have such a clear memory of returning from traveling in countries like Morocco, Egypt, Jordan, India and being able to drink tap water, have hot showers, I was so grateful for having running water of any kind. Not something I would think to appreciate, but like a clear nose after a cold, being able to shower after three weeks of half baths was marvelous. Pulling the Hickman wasn’t bad at all, though I was plenty worried about it. You’ll notice a small red band on the catheter, that’s a cuff to which my body attaches to hold it in place. That was the only sticky part, a slight tug and it was out. Door to door it was about 15 minutes. The other day I got the insurance statement, which noted a charge of 1990.00 for outpatient surgery. Wow. 

You can see the outline of the graft, which makes a loop connecting an artery with a vein.

This is what it looks like today. You can see the needle marks from the top side, and half of the outline. And the incision mark on my tattoo! 

This is what it looked like - the catheter went over my clavicle and was a bit sore while it was in. At first I could feel the tube in my chest which was not cool. 

The Hickman in all its glory. 

It was pretty hectic after MITY – C was out of town, I picked up a dog (as a never-owned-a-dog-person), got a piano and had part of the kitchen redone. Very exciting times. After the dust settled, it was July, and I started to come down from the shit show times. While I believe I have weathered these past few weeks like a leaf on the wind, I am finding that I have been uncentered a bit. This has passed somewhat, but particularly by the end MITY late June, I wasn’t sure where my center of gravity was. I had a hard time making decisions and wanting things, or know what wanting things meant. I would sit on the couch and feel unsettled, paralyzed, not really wanting to sit there but not able to come up with anything else. I found myself just wanting to watch TV shows, though again wanting isn’t really the right word. I would say things that weren’t true, which I would call “jokes.” It felt like someone else talking. Sometimes I would feel cornered, and realize I was kind of panicked, flailing around at nothing. I was more just a body, ungoverned, lurching from thing to thing without enough consideration. I was a bit dead inside, which was and has been a useful defense for me when life gets crazy. When I was last on dialysis (which I did at home at night, but still), I played Civilization III and ate chocolate chips on the couch at my parent’s house. I have no idea how much, but a lot. So many chocolate chips – sometimes a bag a day. 

This early summer, coming out of that late spring malaise, dialysis was at times boring, easy, and quite difficult. Because my blood is going through a machine, my body responds to the loss of volume by increasing my blood pressure (this is a cool, useful thing is one’s hand is bitten off by a saber tooth tiger). But mine would spike around 180/110, which is way too high. It’s getting better, but that kind of thin wears a person out. I would walk out of the clinic kind of dazed sometimes, too hungry, and physically off. Other times are just fine. But it is an obligation I would rather not keep, and like other such obligations, this one wears a bit over time.  

Otherwise it’s been a relatively normal summer. MITY went well, it’s such a treat to teach such great kids with such a great co-teacher. C and I got a puppy – a really sweet lab / pit bull mix we named Oscar. He is currently napping beside me on the couch. I enjoyed a number of world cup games, which were pretty spectacular, I was able to spend a week at Lake Melissa with my family, a summer tradition going back to before I was born, I’ve enjoyed lunch with teacher friends who also have the summers off, and recently got back on the bike again, all of which has been great. Like most summers, it took me a while (until this week) to get productive but I’m not gonna beat myself up about that. Also, I’m starting to think about teaching in the fall – I’ve got some ideas, which means I am pretty well rested and getting ready to go. I’m looking forward to more biking (anyone interested in easy, re-hab style biking?), reading and hanging out with Oscar, who is just interested in being loved and smelling interesting smells. I wish you lots of love. Keep smelling interesting smells. Thanks for reading!

Thank you for enduring the medical photos. This is my niece, Miri, playing with Oscar at the lake. 

Starting Dialysis in 3 ... 2 ...

Hey team – I just started my first run on hemodialysis at my new part time job: Monday Wednesday Friday from 4-730. It’s the clinic I wanted, where my nephrologist Dr Hall is the main dude, on 43^rd and Nicollet. The evening shift is quieter, the chairs on either side of me are empty. I’m facing a set of windows looking south on Nicollet, so if you’re driving north and seeing that bank of windows as you past the Frame-Ups, that’s where I sit. This spot is above where my transplant center was for years and I have a lot of memories of parking in the lot and dropping in for lab draws. I’m not sure how to describe what it feels like to be upstairs.

I used to wonder at who was up here. When I would see the clinic I was always grateful that I was going downstairs, grateful that I was making a quick stop and not stuck in a chair for 3 hours. Now that I’m up here … I don’t feel as despondent about it as I worried I might. Like so many of the changes I’ve faced this is now the thing I’m doing. For a moment I felt like I was living someone else’s life. When I was a kid, riding in the car, and especially at night, I would wonder where the other cars were going. I would picture myself in their car for a second, going the other direction in the night. The lights on their dashboard, their destination in mind. Now I’m in one of those clinics I used to drive by wondering who is inside.

I don’t know, I’m noticing again that it is a little difficult to differentiate between what I’m feeling and what I think I ought to be feeling. I don’t think I’ve encountered the hard part yet, at least it doesn’t feel like it. To hook up to the machine I’m using the shoulder catheter, so they don’t have to put needles in my arm (that will start next week, hopefully), so sitting here doesn’t really feel like anything. Just that I have to be here. So long as I’m cool with sitting here, it’s pretty easy. It doesn’t feel like a confinement, at least not now.

Maybe I’m feeling alright because my hospital stay was a little rough. Nothing too eventful, but I think I expected to be in better shape, and to be more comfortable because I was going in relatively healthy (not passing out) and only had a minor surgery. That part went pretty smoothly – they placed the catheter in my left shoulder in about 15 minutes. Like the graft placement, I was under conscious sedation and have some memories, and it seemed to go pretty smoothly. When they placed the arm graft I could feel them pushing and pulling on me, I could tell it was a bit rough. This one was fine. I was in a neural unit briefly waiting for a bed on the nephrology unit, where I moved in the early afternoon.

That afternoon I dialyzed for the first time. It seemed to be in a different room from when I dialyzed in Abbott in 2003 after they removed my Mom’s kidney, though it’s hard to know how much of that memory is real. I remember sitting in a chair when the surgeons came in – I had gotten to know these guys pretty well, they operated on me in November 2001 to put in my Mom’s kidney, they we had consulted and they operated on me again that March, the 17^th I think. On a check-up they found a growth in the transplanted kidney, a biopsy showed that it was a neural schwannoma, a nerve tumor growing in the kidney. Of course, like so many other things, this was unusual to the point of being unheard of. They tried to take out the tumor only and save the other lobes of the kidney but were unable. They came in to deliver that news while I was on dialysis. They came in kind of quiet, almost contrite. For whatever reason I was absolutely unperturbed by this turn of events and my memory is that I cheered them up. We chatted for a bit and they went on their way. Being on a machine in Abbott this time around, I can recreate that memory, though I like it the way it is. Incidentally, and I mentioned this before,  the radiologist who performed that memorable biopsy (he had to rebiopsy several times), performed another biopsy on my a year or two ago. I mentioned that this biopsy was much smoother than another one I had had years ago. He asked if it had been on a donated kidney from my mom and remembered it. He said the lab kept asking from more samples because they weren’t getting kidney tissue. Of course this was because he was collecting samples of a huge tumor.  I love telling that story.

Anyway, this hospital stay was only about 36 hours – Tuesday morning to Wednesday afternoon, though it felt a great deal longer, longer than I expected it to. I think because I was out for a bit during surgery, and because I did two runs of dialysis, it felt more like 4 days than a day and a half. My shoulder was more sore than I expected, so sleeping was a little tricky. Also my neighbor had some dementia and was a yeller. It was unsettling at first, like a nightmare, to have this woman yelling for help next door to me. Hospitals are kind of like an alternate universe. The reality of the room and hallway and beeping blurs into TV shows and movies. This is compounded by a lack of sleep, pain killers, feeling sick, etc. Mostly being there is fine, boring, but I can’t help but perceive this undercurrent of panic. Occasionally if a nurse is too busy to respond to a call right away, or if a woman is screaming for help next door (!), I can feel the reality of the room and my situation slip a bit and every possibility becomes real. It’s hard work, being in a hospital.

Now that that’s over, the rest of the world doesn’t seem so bad. I’m starting MITY on Monday with Ellie. This is our fifth year teaching together and we can’t seem to both be on our feet. Last year I had just had my second nephrectomy two weeks before we statred and she was pregnant. This year she has a six month old and I’m doing this. We make a good team and I’m not worried about it. I feel lucky to be there. I managed to finish the school year without missing too much time (other than for that cold) and now I’m able to teach again, having conveniently spent my two week break feeling sick as shit and being in the hospital. That sounds whiney but I wouldn’t want to miss any more school. I’m pleased with myself for the work I was able to finish this spring term. I finished all of my courses at the U and St Thomas on time (barely) and I have to finish up one more paper for a directed study that isn’t on any timeline. I believe I’ve managed to live my life so far without too many compromises or interruptions.

I’m not sure what dialysis will mean for my life this summer and fall, though I’ve been eager to slow down after this past year and this will certainly afford me lots of time for that. Ellie Dan and their munchkin Simon live about two blocks from here, and there’s a great burger place on this block – The Lowbrow. Maybe that will mean lots of post-dialysis burgers this summer. My mom is here for a visit so I’ll wrap up. It’s not a great visiting place and I’m not sure how to navigate that for friends / family quite yet but I’ll keep you posted. As always I’m so grateful for the support you show by reading the blog and the thoughts and well wishes. Thanks for reading!

Donor Info and Shit Show Installment Two

It’s been a busy two weeks. Before I go into that: Today, Monday, I had a series of appointments at Abbott to prep me for transplant (hopefully in January). I now have an important number. Susana Gust is the donor coordinator for my transplant team. If you are interested in being tested for donation, she can be reached at 612-863-8886. You are never under any obligation – you can back out at any time. I have no access to any information about this. They keep me in the dark: I don’t and will never know who calls or gets tested unless of course you end up being the donor. I hope to write more about this later, but I’ll say here that even considering that any of you would think about being tested is overwhelming to me. It’s big big big. I tear up just thinking about it. Phew!

So here’s the latest installment of the spring 2015 shit show.

I had a cold type thing the week of May 25^th, so I was out of school on the last week, which was a bummer. That Thursday I went to an appointment to get my arm checked out for the dialysis access with vascular surgeons. The doc guy found clots in whatever veins they would use to make a fistula, so they would put in a gore-tex graft connecting an artery and a vein to be used for dialysis. And they could fit me in for the surgery that day. So I left to pick up Corinne for a ride home after the procedure and had the graft placed that morning. I kept an appointment that afternoon to get checked for pneumonia, though the surgery drugs continued to do their thing and I have little memory of any of that. I tried to work on Friday but only made it through two periods. And my arm hurt like hell.

I finished the year with finals on Monday and a retirement send off for Dick Engler on Tuesday, but my arm was awfully sore and I was increasingly feeling shitty. My labs on Wednesday showed that my creatinine had risen to 5.4 (a full point from one week before) and my doc wanted me to start dialysis immediately, which meant having a second access put in – a temporary shoulder catheter I also had when I was first diagnosed in 2001. I’ll post pictures of some of these later. I was pretty embarrassed about the catheter port the first time around and I’m ready to move past that – and bring you with me J.

I balked at the idea of having this surgery, as I balked at having the fistula back in January when it first came up. I had hoped to limp to the finish line of transplant eligibility in January 2016 without dialysis. Now I hoped to limp through the healing time for the fistula graft – 3-4 weeks – without needing the secondary catheter. There is risk associated with the shoulder catheter / access – it can cause vein stenosis (narrowing) which can lead to arm swelling. I already have a bit of that from the last time around. Additionally, if the shoulder access is in place for a while, it can become attached and difficult to pull out (this is one of a few traumatic memories from my early diagnosis – the guy pulled so hard on the catheter I thought my face was being pulled off). Anyway – I hoped to avoid it to no avail. I had waited too long to have the fistula placed that I felt sick enough for dialysis before it was ready, and tomorrow (Tuesday), I’m having it placed. I should only need it for a week or so, so it shouldn’t cause any trouble.

On the plus side, being sick now will help me appreciate the good the dialysis is doing – I’ve felt a motion-sick style nausea off and on since Thursday of last week. At this point, I’m ready for the treatment. I’ll be staying at Abbott for a day or two to make sure everything goes smoothly, then back home. Thanks for reading!