Thinking

inguinal hernia

One of the first things I knew about myself and some of my early memories are related to my childhood hernia. I recall having pop-up books that were designed to help make medical experiences less scary for kids. And it worked. I was never afraid or felt traumatized that I can remember.

I only learned recently that inguinal hernias are one of many conditions that babies have that are corrected by simple procedures after birth. Some of these “corrections” are sex assignments, as inguinal hernias can impact the development of the sex organs.

Total number of people whose bodies differ from standard male or female. It turns out that it’s about 1% over all. Was I one of them? Would that explain something about me?

I called my mother if she knew whether I’d had any adjustments done during this surgery, but I was too afraid to ask.

What am I looking for? A justification in the body for liking pink or being a feminist?

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Two Regrets

I have two persistent regrets:

  1. Not making it work with Abigail

  2. Not spending a year in Paris with Carolyn

These regrets are overlapping. Abigail was my first true love. But I was afraid with her that my life would become smaller, that I wouldn’t do the searching I needed to meet my unknown future. Some of this was petty in my youth—chasing dreams and girls. Some of it was real—I wouldn’t have asked her to follow me east and to New York.

Carolyn was a whole different thing. It was initially intellectual. A slow burn of years, full with reading and writing that only much later blew up. I was afraid that I would never be her equal. I could tell she didn’t trust my youth. I ruined it before we got to the year in Paris together. Instead I went to graduate school and met the people who would later betray me.

I can say unequivocally that I was doing the very best that I could do. I was making sane and sober decisions. I was being true to myself. I was protecting my dreams and forwarding my personal growth. I don’t think I could have done my part much differently, given who I was. I regret that I wasn’t different. I regret that I couldn’t commit my life to another ahead of my own ambitions. I regret that I couldn’t imagine my life being better as part of a couple.

The last time I spoke to Carolyn was in the late summer of 1998. I missed her for years before that and all the years since.

Abigail stopped talking to me at my best friend’s wedding. She might have stopped some time before that, but that’s when I realized it. What year was that? 2002, 3, 4?

Now I sit here at what feels like the lame denouement of my life. Winding down and reflecting, exhausted, waiting for cancer’s return. My mind turns again and again to these old regrets: two people I loved uniquely, hurt brutally, and who asked me to stop contacting them. So I did, and I have.

I’ll probably go on wishing for them to be in my life until the end.

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Cancer Vegan

I am a cancer vegan. A reluctant vegan. An imperfect vegan prone to meat-lapses. Vegan because there is some research that suggest being vegan lowers the chance for cancer to return. I’m not a political vegan or a moral vegan. I’m relieved that veganism is environmentally friendly, but I wasn’t a vegan before I got cancer. Strangely, I don’t even think it’s important that I survive cancer. I believe it will come back and kill me, nevertheless, I’m a kind of vegan, a cancer vegan.

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Am I Depressed?

I’ve never thought of myself as depressed. Pessimistic, maybe, negative at times, and critical, sure. But never depressed. I’ve always thought of my brain chemistry as somehow uniquely me, something to be preserved, if possible. I knew kids who got put on all kinds of medication in high school and it was clear that the dosages and side effects were a nightmare.

I figured that if I could stay out of the hospital, pursue my goals and dreams, and not be a horrible person, then I would deal with the ups and downs of my own internal experience.

Here we are all these years later: I’ve stayed sober, I’ve stayed out of the mental hospital, I pursued and accomplished a lot of my goals and dreams, and then I got cancer. The goals I never reached I was still working on — a permanent academic position, a better art career, another long term intimate partnership, possibly a family, a more loving and supportive affect — and actively striving for.

My particular treatment for my particular cancer involves androgen deprivation, that is chemical castration, which obliterates sexual function, reproductive capacity, energy levels, muscle strength, etc. I started the daily weeping soon after I started the androgen deprivation treatments. I would cry for some part of every day. I did that for a couple of years. It seemed normal. No testosterone, no sex, no family, no future = profound sadness.

It was a kind of revelation: being closer to emotion, feeling submerged in an ocean of emotion, was freeing. I felt as though I was seeing the world more clearly, feeling the world in a way I never had before. It felt like insight, upsight, but it was largely negative. I felt betrayal more acutely.

The weeping can be triggered by lots of things. Thoughts and feelings mostly, but conversations, situations, contexts, too. In conversation with my friends, if we approach the serious topics, the weeping can be extensive. Alone in the car, it can be strong them too. At the oncologists office the weeping is often strong. Back in Memphis, the oncologist was visually uncomfortable with my weeping. He offered to medicate me regularly. I refused.

Speaking with people I trusted, I still didn’t feel depressed. I felt profoundly sad about a profoundly sad situation. If anything, I thought I was reacting normally, or perhaps with increased sensitivity which I attributed to the clarity of my spiritual practice and condition.

I had a dark moment a couple of months ago. Thinking about what would happen to me without my family’s support. Understanding that I would be indigent, homeless and vulnerable without them. I had a moment of clarity in which I realized that I would not seek to survive cancer in such a situation. It was rough. It was dark dark dark. I didn’t contemplate suicide, but it was close.

Refusing cancer treatment isn’t the same as shooting yourself, but it’s not that far off either. I don’t know. I’m not sure how to feel about it. It was a hard thought, which came upon me during a dog walk at the scatterwash. I wept.

In the oncologist office, when they tell me that my PSAs are still undetectable, that might be a success, but I experience it as a continuation of this excruciating status quo: this sentence of exhaustion. The weeping makes the doctor’s office uncomfortable. Worse, the next room is filled with properly doomed old people hooked up to chemo machines. I walk in and out on my own, I have relative freedom and reasonable expectation of some years of life.

And so I find myself asking again, Am I Depressed?

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Cancer Therapy

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It seems like it would be a no-brainer that every cancer patient have some kind of mental health treatment along with whatever other cancer treatments they receive. Surgeries, radiation and chemotherapies are so common that the vast majority of cancer patients get at least one of them. Mental health services are considered optional.

I’ve had to fight for cancer therapy and have found it hard to get. The only therapists of any kind that I have found who have specific knowledge of cancer are the social workers connected to the the practices of oncologists. They tend to be case workers, have specific knowledge and can be extremely helpful, but are not psychologists. I haven’t found a psychologist with a specialty practice in cancer patients.

I weep every time I get into the details of my cancer story. Every time I go to see the oncologist, I weep. It disconcerts the doctors and nurses. My specific cancer treatment involves androgen deprivation, so that might account for my weepiness, or at least some of it. Nevertheless and despite knowing what the treatment is doing to my body, I am an obvious emotional problem in the oncology office.

Back in Memphis my oncologist would offer me anti-depressants pretty much every visit. I finally told him through many tears that I trust his judgement with regards to my cancer treatment but that I would prefer to see a psychiatrist if he thinks I should be medicated. He wasn’t pleased. Generally, I don’t think of myself as depressed. I think that I am profoundly sad about a profoundly upsetting situation. Seems normal.

Back when I had the energy, I really wanted and thought I could benefit from weekly cancer therapy. I was only able to get monthly check-ins. These were helpful, but I could have used more. After the cancer therapy dwindled, I was able to get some regular therapy through work, but again it was once and month and while helpful generally, didn’t have a cancer-specific component.

Now my energy levels are in the dumpster, which is evidently a known and anticipated side effect of the androgen deprivation therapy, I still have the weepiness and I still don’t have accessible therapy. When I got to Arizona and found an oncologist, I asked about cancer therapy. I was given a list of places to call. But the doctors appointments, blood tests, shots and scans are all scheduled efficiently and directly. For some reason, I have to handle the mental health component on my own.

Which is a problem.

I can get to appointments. But the same steps I take to schedule other cancer treatments do not work to secure comparable mental health services. I don’t get it. Why not?

It’s upsetting. This morning I made a call and got three important appointments made for upcoming tests. It was super easy. They called me. I called back. The insurance issues are taken care of up front. Approvals secured by the oncologist’s office before the tests are scheduled. Then I make a call to the social worker to try again to get mental health services. She’s helpful, but there’s nothing in place. Nothing pre-approved by my insurance. It’s treated as a separate situation. There is no list of psychologists or psychiatrists who have practices built around cancer patients. Further, I’m told that generally the therapists available through insurance are younger, less experienced and generally less reliable than private practice therapists. The suggestion is to pay cash to a private therapist for better and more consistent treatment.

My reaction to these things is to weep. It’s overly complicated and all up to me. It’s overwhelming. And today as I was getting the overwhelming picture I realized that I had received all of this information before, several months ago. The calls I made then came to nothing. And it starts to feel inevitable that again, I won’t find the help I’m asking for.

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Migraine Morning

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My first terrible headache happened when I woke up from a sports-related ankle surgery when I was 17. I was in the recovery room and when I woke up I turned my head and felt a shock through my neck. Ever since, I’ve been susceptible to neck kinks and migraine headaches. After several tests I was diagnosed in the early 2000s with mild migraines.

Mine aren’t debilitating, but they suck. When they come on, they are characterized by sensitivity to light and sound, where anything bright literally hurts and abrasive sounds are offensive. The nausea is mild, I feel queasy but still think I can fix it with food or drink. The pain usually centers around my right eye, reaching around to the back right of my neck.

I’ve been through periods where I get them multiple times per week, and other periods when they hardly ever happen. I always have the feeling that I can prevent them. The right mix of hydration, exercise, diet, sleep, temperature, etc. Generally, getting exercise, staying hydrated, avoiding salt and sugar, sleeping well and keeping my neck warm without getting too hot helps. I think so anyway.

I used to have prescription meds for them, but they made me feel like a zombie — like disconnected or separated from my senses. For years I’ve just used Advil Migraine or other soluable ibuprofen. If I take the medicine as soon as I feel the headache coming on, it might go away. Otherwise I’ll need a hot shower and eventually sleep to reset it.

Trump Should Resign

Listening to the coverage of the Mueller Report, I am relieved to hear that the Trump Campaign’s conduct didn’t rise to the level of criminality. Thank god they didn’t have an active conspiracy to steal the election. I’m still concerned that Trump himself is an unwitting asset of the Russian Government. My secret theory is that Melania turned him years ago.

Nevertheless, based on his abuses of power and consistent lies, I believe that Trump should resign. He won’t spare us all a long, ongoing dissection of his odious behavior, but he could do the country a favor stop damaging the office presidency itself.

Of course he won’t do it, but he should

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The CancerGram

The CancerGram was a daily practice I undertook starting shortly after I had survived radiation. I was starting to feel better and wanted to tell the story. I was overwhelmed my the scope and scale of the experience and felt incapable of a comprehensive narration.

I resolved on a daily practice in which I would reconstruct the timeline of my cancer diagnosis linearly through daily social media posts. Based on my notes and journals, I started with early symptoms of prostate discomfort and worked forward in time.

Each day I made a digital drawing in a mobile app. Each drawing consisted of text, a finger or thumb scribble and a hazy color background I made one of these each day and posted them immediately to Instagram and Facebook, sometimes with explanatory text and hashtags.

Each evening I would make a follow up post related to the first, generally a photograph, but as the project evolved over the summer, I started making digital images, short videos or animations. The idea was to work quickly, to learn or practice something, and to put the work into the public sphere in social media.

Having little experience with social media, the responses were limited. Eventually I started popping up in the feeds of old friends. The responses were intense and not always unwelcome. There was general confusion over the posts not corresponding to real time. I was consistently posting about experiences years and months in the past.

The original cancergram concluded on a dark note with my death vision in July 2017. I reprised the practice in the summer of 2018 to allay fears of my death and conclude with a more hopeful tone.

This exhibition did the cancergram some justice. I culled the images from the first leg of the raw gram into 18 zines that visualize the story arc of my diagnosis. The 9 animation loops provide a persistent vision of the work that doesn’t go away. Copies of the zines were given to gallery visitors throughout the show. The videos were looped on Amazon Fire tablets mounted wirelessly on the wall.

I generally feel that the work didn’t have great impact. There’s no linear video for the festival screen. The work doesn’t feel available to its potential audience. The importance of the seamless loop of each video meant that each needed its own monitor and that a linear edit felt inconsistent with the desired persistence.

In the hope of extending the availability of the work and perhaps to archive it outside of instagram, I’m trying to put them up on my website. The hard part is to get them looping consistently. It seems to be brower-sensitive.

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Taxes, Work, Career

I don’t really mind taxes. I kind of believe in them. I like to live in a society where we all contribute to our collective benefit. I hate doing my taxes until I’m doing them. I use TurboTax, so it’s pretty easy, I just dread it.

This year, doing my taxes for what might be the last time, felt like a kind of referendum on my relationship with capitalism. I literally wept while filling in the numbers. It was an earnings funeral. My time as a profitable person is over.

In my whole work career I never made more than $52-53k in a year, and that only a few times. That amount of money seemed ok — I could live, pay rent, bills and college loans and not really worry. But I couldn’t buy a new car or a house without family help. I felt like I should be middle class, but there was never any money left over or much savings.

I had been imagining that I would catch on at one of these colleges and start building a career. Get on the tenure track and work for 30 years. My mom worked until she was like 74 and I figured I’d do the same or die trying. I really liked thinking about art, talking about art, making art, teaching art — all day long.

I remember thinking that my 13 years in Brooklyn were a kind of early retirement. I was always trying to work less. Even though I worked those years, I probably only worked full time for half of them. Otherwise I was finishing my graduate degree, between jobs, or going to artist residencies. I wanted 3 day weeks and to work from home. I wanted to read books in cafes on weekdays.

I realized at some point that my problem with work was that I always wanted to be somewhere else, doing something else. It wasn’t until the economy crashed in 2008 that I was finally able to take the opportunity and apply to artist residencies. It was such a revelation. To be an artist all day, every day. It was transformational. I finally felt like an artist. Even deep down.

Now my career feels over. I don’t know that I’ll ever work again. It’s been almost a year since I stopped teaching and I’ve only gotten more fatigued and weakened by the cancer treatment. Working full time hours feels like an impossibility. I’m probably more likely to go on permanent disability than I am to work full time again.

During the days I work in the garden. I take lots of breaks. I rest. I stay hydrated. I go to doctors appointments. If I do too much in the yard, or if I go to the doctor and the grocery store, I literally don’t have the energy to walk my dog. If I take a walk with the dog, I won’t want to leave the house in the evening. It’s extremely limiting, this finite daily energy. I don’t know how I come back from it.

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Laurel Lynette

My mother once told me that after my older brother was born, they were hoping to have a girl. When my mother was pregnant with me, they went as far as coming up with a name for the child they thought she would be. Her name was Laurel Lynette.

At first I thought the idea was weird and vaguely disturbing, a female version of me from an alternate life or some other reality. Later I thought of her as the little girl inside me, some component of who I am. Maybe she was why I was always a feminist or liked the color pink.

Now I am starting to think that she is actually me. That we are the same. Or that I am becoming her.

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What would it mean to commit to a life of service?

Back in another hotel conference room, contemplating a life of service.

Back in another hotel conference room, contemplating a life of service.

These area assemblies are the most obvious and known avenue of service for me. Do I want to do this again? What would that mean? To be an active GSR: quarterly weekend assemblies, monthly sub district meetings, bi-monthly district meetings, maybe some committee work.

Why would I do this? Why wouldn’t I do something political? Finding my place. Where I can be useful. Where the daily experience isn’t a torture.

What does a life of service mean when you don’t know how much life you have left? I guess it’s the same for everyone.

Do I have the energy for this? Can I swing it? If I’m committed, I think yes. Am I?

cancer yoga

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I had this idea when I was getting sick to start a business called Cancer Yoga. It’s basically just a yoga studio that caters to cancer patients. I imagine it as the kind of place I would have gone when I was getting radiated or afterwards. I desperately wanted to find a place where I could develop and expand a gentle, healthful personal practice outside of the context of both religion and the gym.

Discrete, non-judgmental, community-oriented. Classes for chemo, for the radiated, pre-op, post-op and for those in remission. Classes for the young, old, fatigued, weak and fat. Probably lots of restorative yoga, adapted yoga and limited yoga.

I wish I had found a place that would accept insurance or FSAs, with yoga instructors that were enthusiastic about solving the problems that keep cancer patients from engaging in healthful practices before, during and after treatment.

Mayor Buddha Judge

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The presidential candidate Pete Buttigieg was on a podcast I listened to and he said that how people feel about you is based largely on how you make them feel about themselves.

Its so simple. So obvious. Duh.

But I think I’ve never comprehended this. Or haven’t sufficiently valued it.

If I apply this principle to specific incidents in my past, I will learn something. That I made people feel bad about themselves. Ok that seems known. No big revelation.

I feel like there’s something past this that interests me more. Not able to get there or grasp it.

special olympics funding

I found myself offended, as many people have, upon hearing about the Betsy Devos’ plan to cut funding from the Special Olympics.

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Even with my lack of testosterone and propensity for weeping, I’m not a person who readily feels pity or guilt for disabled children. Why then do I find this move upsetting?

The $18 million cut is so little in the government budget and makes the cut seem petty. But pettiness is a daily routine for Trump and his administration.

DeVos’ defense for the cut was that the Special Olympics is strongly supported by private philanthropy (quoted as at $100 million a year). By cutting the government funding, private philanthropy would have more power and influence. This impetus to consolidate power and influence to wealthy individuals seems to be a pervasive component of modern conservatism. I hate it.

I realized that as a tax paying American I have some small pride in the good things we do as a country to help people. I want my tax dollars to support services that help people in need. I’m offended because relying on the philanthropy of the wealthy cuts average folks out of doing good through government.

imaginary life

It turns out that my life was largely imaginary. I imagined it. I dreamed it. I lived it only accidentally, or in passing.

I never found the partner I was looking for, or the deep and abiding love that might have convinced me to trust and make family.

I found the friends, I think, and felt well understood. I was useful, for a time, to a few, and that was good.

I was meant to teach. I felt that strongly. I’m surprised it didn’t work out better. At my two real jobs I made strong connections, met great professors and students. But I also endured some of my life’s most profound humiliations.

Then the cancer, which ended my ambitions. The way that the cancer itself ruined me physically was just the first brutal phase in crushing my dreams. The treatments have been the second part, eroding me such that a return to normalcy is impossible.

I don’t know what’s left to dream. I think service, usefulness, but I’m tired. So tired.

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