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.