Donor info

Hey folks - Thanks for the support and well wishes. I still feel strange about the ask, but I do think it's the thing to do. For more information on donating, call Susanna at 612-863-8886. The formatting made that hard to see on the last post. As a reminder, you are anonymous until you have passed all the tests and have decided to donate, and of course you can back out at any time. Thanks again for giving it a thought - I know it is no small thing. 

Got a Spare Kidney?

 Hello lovely readers –

It’s been a busy time – C and I are closing on our new house November 30^th and moving the following weekend. My term at the U is wrapping up and I’m finished with my licensure work. I feel more grounded than I have in a while, and have found the energy to reinvest in conversations about policing and refugees and politics. Dialysis has been smooth for the past two weeks, and seems to be continuing to be smooth, so access failure isn’t such a pressing concern. It is only a matter of weeks before the access needs more treatment, and it is only a matter of time (probably in the 12 month range) before it fails entirely.

Corinne and I listened to The Martian over a few car trips last year. The premise, that Mark Watney is stuck on Mars for months which turn to years, entirely alone, fending for his life, is incredibly engaging. A rescue mission would be dangerous and he worries about his colleagues and friends risking their lives to save his. This resonated with me. It is overwhelming to think about the sacrifices people have made for me by donating a part of themselves. It’s overwhelming to consider that people would consider being tested to donate. And it is overwhelming to think that to find someone to donate, I need to advertise for that kind of generosity.

I’m not sure how to write about this. I worry that these posts will shift from informative story-telling to a kind of soliciting story-telling. I wonder who I am to ask for such a thing. I worry that I am antagonizing people who have already been tested, or who want to donate and cannot. Yet I also imagine that many of you have thought about being tested and just haven’t for whatever reason, which is exactly where I would be, to be honest.

Asking for things in general is tough for me, and this is a big ask. But I’m weeks away from being eligible for a transplant and there is no donor in sight. I don’t know – how does anyone navigate this kind of thing? I want to say – please get tested. And I want to say – I’m sure someone will turn up and suddenly the wait will be over. I want to say – I feel great, dialysis is no trouble. And I want to say – I feel like my life is on hold until this is sorted out. That’s all true. Well I think I’ll leave it here. I wanted to embed this renewed called for donors in a more substantial post, but that isn’t really working. Please consider getting tested:  (Susanna @ 612-863-8886).

Thanks for reading.

Vein Balloons

So this is why I missed dialysis on Wednesday. I’m trying to write a paper for my Critical Discourse Analysis course, which obviously isn’t going very well. So this will serve as a little break.

When my kidney doc heard that as a result of a blasted vasculature, I received a synthetic forearm graft instead of a natural fistula, he seemed disappointed, though at the time I did not appreciate the difference. A synthetic graft, being synthetic, tends to have more complications than a natural fistula because of a body’s reaction to it. I, being a young healthy person, am having those reactions. Bummer indeed.

I’ve heard that typically grafts require treatment every 3-6 months, sometimes less and sometimes more frequently. While I had a very high initial “access flow” (meaning the blood was moving through the graft and back to my heart nicely – the number was 1200 something), after about three months the access flow wasn’t flowing quite so nicely (600 something) so I went to the vascular center in a strip mall on County rd D and 35W to have my veins ballooned via angiogram. Piece of cake. I got to watch the whole thing – kind of a crazy enterprise, x-rays, contrast dye, I got to know my left arm and shoulder from the inside. They ballooned one spot in my forearm, not painful at all. I was back at dialysis that afternoon after a nice lunch at Blackbird.

Six weeks after that (in October), I was back at the vascular center with an even slower flow rate (300 something), for some more serious ballooning. This time the narrowing was in my upper arm. I had bravely (stupidly) foregone the sedatives assuming it would be the same cakewalk as my previous visit. I survived fine, but it was a bit of a ride. Ballooning felt like my vein being stretched – which is to say it felt like when I have sat with my legs dangling off a ledge or something, then had jumped down and my feet felt like they had exploded. Know the feeling? It wasn’t quite so acute, but it was uncomfortable, and it lasted about 15 minutes. The vein is stretching and tearing a bit. The interventional radiologist almost put a stent in because the vein was damaged. Lots of breathing and a few bad jokes to try to pass the time. Six weeks was a quicker turn around than most of us hoped for, and the whole graft thing was starting to become the adventure Dr Hall was worried about.

I returned to dialysis feeling more deflated than ballooned, thinking I was now in for a visit to the strip mall every six weeks rather than every three to six months. Two weeks later, when I went in to dialyze, my access was clotted.

I should say that the access clotting was a kind of worst case, nightmare scenario. If the access is clotted, no dialysis. As one tech put it – the access is a lifeline. If it is clotted, the good people at the strip mall clinic work to open it up. If they cannot, they reinstall (the first word to come to mind) a shoulder catheter – the dreaded no-showering, stenosis-causing Hickman. I also would need a more permanent access, a graft in my upper arm. That was Wednesday last week. Not a great day.

However, this story has a happy ending, at least for now – always for now. J

The wonderful people at the strip mall vascular surgery center, with whom I am now well acquainted, were able to clear my graft using some anti-clotting drugs and more balloons. So many balloons! This time I opted for some sedation so I was more comfortable. I still watched and made my comments and asked my questions. Those poor people are used to quiet, sleepy, sedate patients. Not me. As of Monday, yesterday, with the help of balloons and some blood thinners, another access flow test showed a flow rate of a robust 1700. The graft is clear and flowing strong – for now.

As it has happened so many times in my life, right when I’m feeling kind of down about the daily routine of dialysis (always today, yesterday or tomorrow – always always always always) something goes to shit. This week I’m appreciating the daily routine of dialysis. I suppose it was only a matter of time before I started settling into this new normal. And it is only a matter of time before graft will slow again, the veins running from the graft back to my heart will narrow, or the artery leading into the graft will narrow, and the graft might clot off again. Something like this will happen again, maybe soon.  But for now, things are moving, and I need to get back to this paper. Thanks for reading!

In the Chair

As I’ve written, somewhat extensively, my health struggle in the past year has been a resistance to realigning my identity to better match my reality as a sick person. There are plenty of good reasons for this resistance, and in some ways I have benefitted from it. I believe that I am more active and have continued to live my life as I want to live it due to my insistence on conceiving myself as a healthy person circumstantially compromised, rather than a sick person getting by. I am biking (sometimes to and from dialysis!), finishing my license and continuing my PhD coursework. C and I are buying a house, working on renting ours, and making plans for our future. However, my resistance to “being sick” does not and cannot ameliorate the daily anxiety and attention toward managing my body.

Managing my body can look like a lot of different things, many of which I’ve written about already. I am attentive to my dialysis access several times per day, ensuring that it is open and working well. I am attentive to my diet and fluid consumption (this becomes more of an issue the more degraded my kidney function becomes). I am attentive to scheduling my life around my dialysis – while I am able to do some reading, my concentration is limited by the environment at the clinic. I set aside work for this time, reading and online grading, and try to work for the first chunk of my three and a half hour run.

While the dialysis techs who “stick” me to hook me up to the machines are about my age and fun to chat with, most of the other dialysis patients are like a family I can’t bring myself to identify with. They tend to be older and much sicker, though most are very friendly. The set up isn’t conducive to much conversation, and while we have kidney failure in common – no small thing – people tend to keep to themselves. 

Occasionally someone struggles, somehow, which is very hard for me to watch. The other day a man, maybe in his 40s? didn’t swivel enough to move from his dialysis chair to his wheel chair. He is missing the lower half of his left leg, something that might have happened relatively recently, and struggles to move on his own. He didn’t fall, he just sort of slumped while Duke, the tech, supported him under his arms. Duke calmly asked for some help. The guy started moaning, something was hurting him, his shirt was pulled off his back. After a moment another tech helped him into his wheelchair. He was fine, the moment passed. Yet it has become a powerful memory for me, relentless. I was sitting in the chair next to him. It was hard to watch, and it was hard to not watch. I wanted to help him, but in another way I was him. I envision myself in that position, and it is a struggle to accept that - slumped on the floor, my back and belly exposed - with grace. 

Another patient, an older guy who started treatment here after I did, came in with a New Yorker magazine and a good sense of humor. He has struggled. Now he asks the techs a lot of questions, about his blood pressure, about his flow rate, about his access. The techs are starting to give him a hard time. It's good natured and I can't blame them, it's got to be a terrible place to work. I guess - I wish I could join them, but I know too much of what he is facing. His repeated questions, his anxiety about his treatment and his future, that's all way too real for me.

One more story. Another old guy, this one probably in his eighties, walks with a stooped shuffle. He doesn't read or watch anything and is hard of hearing. The staff yell to be heard by him. He's still driving - though he obviously shouldn't be - and hanging on to that. Two weeks ago when I pulled up in the parking lot he was face down on the sidewalk, bleeding from his face and his thumb. He was alright, but couldn't get himself up. I tried for a moment by grabbing his forearm. I felt strength in his arm as he tried to push himself up. He kept saying his car was right there. I told him to stay still while I got help from some folks inside. Two techs got him to sitting and they called an ambulance, which he didn't want. He was back in the clinic two days later and has seemed fine. He still just sits during his run - three and a half hours. I've always felt sympathetic towards people facing the loss of that freedom, but even watching him get into his car as I'm getting on my bike, his resistance resonated profoundly.

There are lighter stories which color my visits as well, but they do not persist as these do. 

Yesterday, Friday, I came into the clinic a bit heavier - extra fluid that dialysis would pull off - because I had missed my dialysis run on Wednesday. I'll explain why in another post. I usually weigh in at 75 kilograms or so and weigh out at 73.5 kilograms, my "dry weight." This time I came in at 77.5 kilograms. I hadn't had that much pulled off before and was a little nervous about cramping and feeling dizzy. I asked that the tech pull a bit less than the full amount. She suggested we pull three. If your math is sharper than mine was, you realize that that is the full amount. As much as she had joked with me or winked about another patient, I was more her patient than her peer. I am in the chair - not facing it, not walking by.  Thanks for reading. 

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.