A moment of douch-baggery on my part.
I was reading a post from a friend about the trouble that transgender people run into in the health care system. There were a lot of problems with the writing and structure – using personal experience as the sole metric for evaluation being the primary. And I let that get in the way of the writer’s larger point.
To wit: a friend of mine goes in for chemo, and the nurse says, “So what did you used to be?”
Um. I’m sick. I’m not dead. I’m not in a halfway place. I’m not isolated. I’m just sick.
So here’s Anthony, lying in a hospital bed in his own room. The tumor has had some affect on his volume, so he always speaks in a whisper now. Sometimes he free-associates a bit, and between not hearing and not knowing the context, it can be hard to follow his thought process. But he’s still himself. On Saturday, my last day to see him, I walk in, “Your mom says you’re full of piss and vinegar.” Anthony: “Damn straight.”
He’s not the Anthony I grew up with – but realistically, he wasn’t that by the time he was 30, when we were seeing each other pretty sporadically. His wife speaks to his personality changes due to the tumor more eloquently than I can. All the same, I’d wager that while the majority of the changes are physiological in nature, some are contextual – how I reacted to getting cancer. How I’m reacting to still having cancer. And so on.
There’s the Anthony I do and don’t know lying in this bed, and here’s the line I’m trying to walk:
No kidding. You are sick. You are dying. I feel for you.
You’re not dead.
I think (I want to think?) that he doesn’t want pity. He wants sympathy. He wants his television (we moved it). And why wouldn’t he, trapped in a bed in a room? Visitors are exhausting.
Here’s the thing that the transgender writer was getting at, that my other friend articulated, that I want Anthony to feel: I’m still a person. Just treat me like a person.
If there’s a single phrase that suggests in our common language that we perform ourselves, it is “out of character.” If we do or say something that is not typical, we hear, “That’s not like you.”
I like performing, but I also like my time as the center of attention to be limited. I really, really enjoyed doing THE HEART OF A DOG with Andy. I loved teaching. But I don’t want everyone looking at me all the time. I like the anonymity of being a guy in the city and not having to worry about someone recognizing me. And if they did, it’d be basically just a novelty anyway. Jonathan West, former artistic director of Bialystock & Bloom and current managing director at Sunset Playhouse, once had someone recognize him in a coffee shop. Said fan was so enthusiastic about whatever she’d seen him in, that she gesticulated his coffee right on to his computer.
See? A little anonymity goes a long way.
I did something screwy to my knees yesterday, and today I’m walking around in constant mild pain. It’s more of a drag than anything else, but combined with whatever was bothering my stomach, I felt like hell by the time we were heading back from the dog park this morning. Lisa commented that my eyes looked glassy.
I can’t perform that – glassy eyes. I can limp, or I can try not to. I can hide some symptoms but not others. I can be sick without acting sick. When we feel like it, we recognize that there’s a qualitative, existential difference between someone who is an asshole, and someone who is just acting like one. My father-in-law has a list of several of these people.
This is the “low affect” question with Anthony. For me, at least. How much of his depression is performed and symptomatic, and how much is generated by his body? The tremors, the tics, those are all symptoms of the disease – or, I don’t know, maybe the drugs that are supposed to be alleviating other things. Anthony is not like anyone I’m used to. He’s articulate and can talk immediately about his lack of threshold between complacency and anger. And because he’s articulate I expect him to be able to do something about it, and I watch as he snaps from complacency to anger, unable to do more than observe behavior in himself that he doesn’t like.
It’s not that the performed “sick” is less true. If I don’t limp, then my performance is a lie by not indicating my discomfort. There’s no more inherent relation between performance and truth than there is between words and truth. We can lie or convince in all kinds of ways.
I got sick three times last year. I generally think of myself as a healthy person, but I’d get a sinus infection one day that would become a cold in 24 hours that would knock me down for three weeks. So I started going in for antibiotics, which I’m not really thrilled about as they’re rather hard on the body, nor do I relish the thought of creating antibiotic resistant critters in my own system. But the short term triumphs, and here I am again, nearly summer, on antibiotics again.
I’m also taking Mucinex (or a knock-off, I can’t remember), for obvious reasons. I’m taking vitamin D supplements. I’m taking probiotics to counteract some of the effects of the prescription meds.
I don’t suffer a lot in the way of obvious side effects. I don’t have to deal with diarrhea (hooray hooray hooray). I do have an upset stomach most of the time. I’m either uncomfortable because I’m hungry or I’m uncomfortable because there’s food in my stomach. Discomfort is really about the strongest word I’d use though. It’s not a horrible thing. And for that matter, this is largely how I felt at the Prague Fringe Festival our first full week, with no meds to worry about at all.
I’m going up to see Anthony next week. Anthony takes upwards of twenty pills every day, and that’s when he’s not on chemo. Anti-seizure. Anti-depression. Drugs to counter the side effects of the important drugs he’s taking to deal with whatever aspect of the tumor they’re supposed to address.
He’s got a brain tumor and I can’t even imagine inhabiting his physical body. I can see the tremors in his hands and the twitches in his face. I’ve been getting so tired at night lately that I can’t read, because I can’t focus on words. I can do a sudoku because the boxes are big, unless my brain turns to mush.
I try and imagine some of those symptoms of Tired when I think about getting through the day with a tumor and nearly 20 super-strong prescription meds. Because all I’ve got, neither of which you can see, is a cold and a bellyache.
Anthony used to say that not having a prognosis was good news. The way his oncologist (or neuro-oncologist or whoever it was) explained it, basically, no news is good news. Essentially, the only kind of news they could expect was bad. As little as a year ago, Anthony was talking about living until 70 or so. Because they don’t really know, right? As of this spring, they determined that the long-dormant side of the tumor was growing, and gave him 1-2 years to live.
His MRI results came back today, and the tumor is still growing, and while he may qualify for some clinical trial or another, they’re now only giving him 6 months.
Today is Anthony and Steph’s son’s 9th birthday.
There are phases in life that come in predictable waves. A driver’s license. Going to university. These are largely built into our society’s structure. Then there are actions, choices. At a certain point, not defined necessarily by age or school, you and your friends started dating, having sex. Then came the wave of marriages. Buying a house. Pregnancies. These aren’t demarcated by an age in the same way, but certainly by a certain time frame. It’s nothing personal, really, it doesn’t reflect on you, but it’s predictable.
I still remember the momentary shock of realization of my mid-twenties that if I saw a woman that I might want to talk to, get introduced to, I might want to check out her left hand first. Ring? I still remember the first time someone confessed an affair to me. There are different rules, but they’re at least clear and predictable.
Sometimes the waves don’t make any sense at all. One sick friend is coming to visit, another sick friend is moving to Milwaukee, a family member falls down and breaks critical bones.
I want there to be more predictability, a rhyme and reason to what seems to be cosmic whimsy. And I know you mean well, but the next person that tells me “everything happens for a reason” is going to get a punch in the nose. Nothing personal.