Start of the shit-storm

In some ways starting the dialysis process is a relief.

After the second surgery and being cleared of cancer last June, my health focus went back to ordinary creatinine levels, which were rising. As of December, they had floated to around 3.2, 3.7, 4.1, which was higher than my previous levels in the 2s. As a reminder, 1 is normal, and somewhere around 5 or 6 is generally where people would start dialysis. A person can live comfortably on dialysis for years, though it is not my idea of a good time, and it’s not particularly healthy for a person. Of course, a person is eligible for a kidney transplant when they reach the level where they need dialysis. I’ve met this requirement since January 2015, where I’m eligible for dialysis or a transplant, but I’ve not started dialysis because I have felt alright, and we haven’t scheduled a transplant because I can’t have one until two years after they removed the cancerous kidney, or January 2016.

This put me in a strange situation. I am not eager to have another transplant, but as my numbers increase and as I start to notice some symptoms of kidney failure (which basically feel like a hangover: low appetite, malaise, not healing as well, etc), getting a new kidney becomes a bit more attractive, especially as it became apparent that it was only a matter of time. However, because I’m ineligible until January, I’ve been desperately trying to hold on to every point of creatinine, hoping to avoid going on dialysis. This is a far cry from the freedom I had experienced earlier for the past 10 years, when my kidney function was stable for years on end, or the freedom from choice I had when I was first diagnosed and needed to start treatment immediately.

 In one sense, the kidney has been on an inexorable decline – there’s nothing to be done to stop it. At the same time, a quick google search will turn up dozens of diets, cleanses and tricks for improving kidney function. This spring I started to take my declining numbers personally.

I’m not a hypochondriac, nor do I generally put stock in health tricks outside of moderation. Still. I would read about changes in diet – less meat, less salt, less potassium, less sugar, more echinacea – all seemingly healthy options. But attempting to enact all of those changes while living a life was more than I could handle, especially as eating had become a way for me to relax and treat myself. As I became more stressed about my declining numbers (stress compounded by my aggressive academic schedule), I started to find EVERYTHING I ate as contributing to my kidney’s decline. Of course, I had to keep eating, but it was a chore. I would get cereal as a treat, and then discover that it was super salty. I learned that bread is about twice as salty as corn chips. Going out to eat inevitably lead to too much meat AND too much salt. I would have small successes, like pan fried salmon and brussel sprouts, but those were rare (and expensive). Plus, every day I didn’t exercise felt like a type of failure.

Being healthy wasn’t enough – I wanted to keep my numbers down. I was trying to control something that was ultimately uncontrollable, but something over which I was told I have a modicum of control. I couldn’t win.

However, I’ve had the fortune of experiencing the events of my life as preordained in retrospect. This is a form of letting go. Somehow, when the dust of each calamity, each elevated creatinine, had settled, I inevitably looked back and thought, yup, that happened. That was a thing that happened. That is now part of the story of my life. These countless clinic rooms, familiar blood draws, unknowable hospital stays – I took these on, both in those moments and into myself. My body became imprinted with these stories: laughing exchanges with my kidney nurses and doctors; the taciturn reception I received to my bad jokes with lab technicians; blurry trips to miserable ER rooms, then miraculously back to normal in a few days; and every calculated response to a concerned “how ARE you?”

Perhaps it has been my mercurial identity that has allowed me to weather all of these stories, all of these selves. Yet there is something sticky within me, something durable that has been shaped and hardened by these experiences. I have resisted performing a sick body for so long that now that it comes time to be sick, I’m struggling to act. Every time I faked it a little bit I made a deposit into an identity to which I no longer have access. The inconvenient parts of my experience had no voice. All of that shit has been building and a solid wave of it is coming at me right now. That sounds a little dramatic but it allowed me to say that life feels like a bit of a shit-storm right now, which is kind of fun. Thanks for reading.

Authentic Living

When I started high school I wanted to be the life of the party. I wanted people to laugh at the jokes I told, to circle around me – I started doing plays and loved it. I wanted desperately to be special, to have some standout quality that set me apart. By about my junior year I had become that person, popular within my crowd of high school theater nerds, band nerds, and I began to crave a different personality. I wanted to be brooding, quiet, I wanted to be fascinating, mysterious. I wanted to be wounded somehow, and I became expert at drawing people (particularly girls) to me by appearing like there was so much more to me than I shared. This worked. In fact, I have been accused of getting whatever I want more than once during my life, perhaps because I have always been keenly aware of the personality I inhabit, and I have used that shamelessly to get the attention of love I wanted.

There are obvious downsides to this, of course. There was no satisfaction involved in getting what I wanted, because the goal was not to attain something but to be able to attain it. I lived for the chase, for flirting, but this pursuit was necessarily empty. The other downside was my mercurial identity. It was difficult, sometimes, to know who I really was, or what I really felt. Even in quiet moments by myself I was completely aware of myself, seeing myself as some other subject might see me. When my kidneys failed in 2001, it was easy to become the person others saw, or wanted to see.

Almost instantly I became the young man who was handling everything so well. My interactions with health care people followed a predictable pattern. During the “interview” when they asked about my symptoms, double checked lab requests, whatever, they would ask what had caused my kidneys to fail, I’d say no one knew, they’d say something sympathetic about how hard that must be, I was so young, etc, I’d shrug it off and tell them that it’s fine, it’s better than being dead, I was not curious about why they had failed and so on. It always mattered more to me that they were attentive and concerned for me, I was flattered. I came to enjoy these exchanges. I was a healthy person aside from this catastrophic fact, and being “brave” / indifferent in front of people who certainly experience the gamut of sick people made me feel great. I had this secret quality that made me extraordinary, and I had some control over how people talked and thought about it.

And honestly, to this day I have no idea what any of this means. I don’t know how I feel about this aspect of my life, sometimes dormant, sometimes dominant. I don’t know who I am in the face of it.

Today, I contacted a clinic about having a dialysis access put in my left wrist. I resisted this for months – perhaps too long. The access will need some time before it can be used, and I’ve started feeling the elevated creatinine levels. My resistance came, in part, from a view of myself that had hardened over time – that I was in control of my body, that I would not be limited by my body, that my illness was a type of performance that had not invaded my deep sense of self. I didn’t want the access put in, and if I was strong enough, or ate certain foods, or thought a certain way, I could limp through the year to January 2016 when I am eligible for a transplant. Being sick is no longer a performance I can access intermittently when it serves me, my sickness has forced its way to center stage. There have been times when I’ve been sick, of course, WAY sick. But these were always temporary and hidden from my public self. I’m now facing in-clinic dialysis treatment, starting some time this summer and going through Christmas. The last time I was on dialysis, I sat on a couch and played Civilization on the computer and ate chocolate chips for nine months. I did not inhabit a sick body, I took my leave until I was transplanted in April 2003.

Who will I be this time, facing this sick body? What body do I perform to the world? Despite dialysis, it will be a struggle to enact myself as a person undergoing treatment for a chronic disease. It will be hard for me to present myself genuinely, without sharing my stories strategically to generate the response I want. It will be a sad and beautiful time, and I hope to live it authentically, whatever that means.

Thanks for reading.