I’m standing at my desk as I type this; I’ve tilted the keyboard and nestled it inside a cardboard box, next to the mouse, which I’ve precariously propped at a steep angle on various piled-up objects. I’ve done this because of the pain I experience when I sit, but in fact standing seems only incrementally better than sitting. So I don’t know how long I’ll last before I give up and go back to bed.
After 27 years of frequently unbearable, undiagnosed pain, I finally have a name for it: Piriformis Syndrome, a neuromuscular disorder, an unfortunate sequela to my long-ago surgeries. (Back in 1978, doctors removed nearly all my right hip muscle, to rid me of a tumor.) Apparently the piriformis muscle (in my bottom) is scraping against and abrading the sciatic nerve, thus causing extreme, sciatica-like pain, especially brought on by sitting. Sometimes the pain dissipates when I stand, sometimes not. Today, and last night, not. Usually, though not always, it subsides if I lie down. Hope springs eternal.
So does despair. They do battle in me daily, hope and despair. I cross my fingers, and then glare at the crossings. Things get very dark indeed when I look ahead, so I try to avert my eyes.
Recently my friend Laura treated me to a play in Berkeley. The play—Taking Over, a one-man show exploring gentrification by Danny Hoch, a brilliant dude from Brooklyn—had garnered rave reviews. I’d heard him interviewed on the radio and—as one who harbors her own passionate aversion to the taking over of neighborhoods or countries—I liked his sensibilities, the brash outrage that feeds his politics. So my dread (of pain) and my excitement counterbalanced each other.
I decided to transfer into a theatre seat for the show, because the pain is worse when I sit in my scooter. Fortunately my seat location, at the far right side near the exit, offered an easy solution; I figured when things got bad, I could discreetly slip out of my seat and stand by the exit well, without obstructing anyone’s view. Pre-show, I tried to postpone sitting until the last minute, but the house manager descended on me and said, in a drill-sergeant’s tone of voice: YOU need to SIT! I smiled pleasantly: I’m about to do that. Drill Sergeant: I NEED YOU TO SIT DOWN NOW!! So I sat, and it began to dawn on me that perhaps my plan to take one or two standing breaks during the show would not be a big hit with this manager. The more I thought about it, the more I worried: how would I get through a 90-minute no-intermission show without taking at least one standing break?
Telling myself that a terrific performance by a genius actor would provide plenty of distraction, I made it through the first hour. But the pain was building; by 9:30 I knew I’d have to take my chances. Quickly and unobtrusively, I slipped over to the exit well and stood clinging to its railing for support. I hoped a five-minute break might do the trick, after which I’d return to my seat.
The play consists of Hoch portraying various Brooklyn characters who are vectors, or victims, of gentrification, including a couple of extremely hyper, aggressive, angry men, alternating with a few less ferocious characters. When I took my break, he was in the middle of one of the hyper-aggressive characters, a foulmouthed guy who frequently interacted with imaginary people in the audience. So when Hoch’s gaze fell on me, standing by the exit, and he unleashed sarcastic invective—“Siddown, what are you, scared, you gettin’ ready to run outa here?”—I assumed it was part of the show. He went on with his character’s rant, but a few seconds later his eyes returned to me and he snarled “I SAID SIDDOWN!”
By this time I’d begun to falter. Was this really just a part of the script, or was he directly addressing me? Should I sit down? Everyone was laughing. I grinned, awkward, self-conscious, nervous, feeling like the high school loner who doesn’t get the joke but suspects she’s the butt of it. If I sat down, wouldn’t that draw further attention to me? Would it spur him to mock me further? Certainly it would worsen the pain in my bottom. If his remarks were really just a part of the monologue, I’d look pretty silly sitting down. At other points in the script, he had exhorted the audience, “Go fuck yerselves!” I didn’t see a mass movement of audience members complying with that order.
In the middle of this inward struggle, I saw his eyes land on me again, and this time something in them stopped my breath. “I’M NOT KIDDIN’! SIT. THE. FUCK. DOWN!!!” he roared, at the top of his lungs.
I froze, my foolish grin scattering. Some audience members were still laughing, but their laughter seemed nervous now, though perhaps some still believed him to be in character. I couldn’t move, his fury (with its implicit threat) so naked as to embarrass. I felt a beam of hate emanate from his eyes and bore into me, pinning me to the spot. If a moment ago I was confusedly trying to sort out what to do, now there was no more sorting, nary a rational thought in my brain, just deer-in-headlights panic. Memories of abuse and public humiliation unmoored themselves and banged around in my gut. All the while, the pain in my bottom, brought on by seventy minutes of sitting, offered a relentless undertow.
At length, my pride assayed to clamber out of this scalding heap of misery. I NEED to stand, I’m not doing it to annoy! This is not about YOU!, I was inwardly struggling to articulate to him, to the roomful of people I imagined were staring at me with accusatory eyes. This is about a disability—
Just then, the Drill Sergeant appeared at my side. “You need to sit down,” she whispered.
I whispered back: “I have a disability that makes long stretches of sitting extremely painful. I need to take short breaks.”
“Then you should leave the theatre and stand in the lobby,” said she.
“I’m watching the show!” I hissed, very quietly.
She paused and then whispered: “I’ve been told to ask you to sit down. You’re bothering him. Please stand out in the lobby.”
Ah, so I was bothering him. I returned to my seat and sat down, eyes stinging, the public shaming now complete. Though Danny Hoch’s play continued for another 15 minutes, I could no longer see it, nor hear a word. I felt dizzy and slightly nauseous, my heart about to leap out of its chest cavity.
A performer myself (veteran of countless bookstore and theatrical readings), I recognize how interruptions can utterly discompose and inflict havoc on carefully wrought artistic momentum. Perhaps if my disability had been more visible to Hoch, he might have reacted differently. Perhaps he’d have cut me some slack if he’d seen me standing next to my empty scooter. To him I looked like any other member of the audience, one who perversely chose to stand instead of sit.
But the Drill Sergeant’s behavior is harder to explain. She knew of my disability; it was she who took my ticket at the door and, when I told her I planned to transfer to a theatre seat, declared that I would have to leave my scooter in the lobby (I’m accustomed to this policy), and showed me where to park it. When Danny aimed his vitriol at me, she could have suggested that I retreat into the shadows of the exit well, from which vantage point I’d be able to see him but he wouldn’t see me. (I of course wish I’d thought of this at the time.)
Interestingly, I remember her from my last Berkeley Rep outing. Having arrived at the theatre early, I was steered into the lobby by a friendly Berkeley Rep volunteer. Since the weather was bad, I took up her suggestion and piloted my scooter indoors, where DS was conducting a pre-show usher briefing. Though my presence was quiet and discreet, DS broke off her spiel and glared at me. “Yes?” she inquired. “I’m sorry, I was directed to come into the lobby by a volunteer staffer,” I murmured. “You need to leave!” she snapped, and leave I did, returning to the cold wind outdoors, which at the moment seemed far more welcoming than the air inside that lobby.
In my experience, Berkeley Rep ushers have responded to the Drill Sergeant’s behavior with uniform embarrassment. Last year, two gentle souls separately sought me out to offer their apologies for the lobby incident. One of them felt so ashamed, he offered to buy me a compensatory treat at the snack bar! (I accepted; hey, what the hell. Those chocolate-dipped macaroons stick to the ribs.) And last night, pre-show, when DS ordered me to sit, a kindly usher winced, patted my arm and whispered into my ear, “Don’t take it personally, she just wants to seat the ushers.”
Aside from stirring ghosts related to abuse and public shaming, the Danny Hoch incident kicked up other dust as well, dust that gets in my throat and eyes and makes it hard for me to breathe. Disability dust. The fact is, managing my disability has become harder and harder. Unpredictable, intractable pain causes me to venture out with friends less and less. Isolation closes in. By now I’ve accumulated an extensive collection of traumatic memories, of outings derailed by pain so intense I could only weep. Memories of being stranded in San Francisco or Berkeley or New York City, unable to drive or ride the train home. Memories of making a public spectacle of myself, in the agonal grip of pain.
The Danny Hoch incident has now elbowed its way into this crowded closet of personal ghosts. I know it won’t stay there. It will jump out at me when I least expect it. It will kick me when I’m down.
Jean Stewart is an El Sobrante resident.