At Least There Is This

Note: This is the fourth post in a series telling the story of my illness. Links to the previous posts can be found in the sidebar under the heading “What’s Wrong with My Body and How It Got this Way.”


It is fall 1997. The scene is a small, one-bedroom apartment in a northern neighborhood of Chicago. The tightly fitted furniture makes a maze of the dwelling—a couch, an armchair, a rocking chair, a tape cabinet, two desks, several end tables, ten bookshelves, a bed, two dressers, two tables, and at least eight chairs. Where there are no books, there’s art. In the living room a short bank of windows overlooks a courtyard. Through it can be seen the facing wall with its faux-Tudor appointments. Look out and hard left: a large tree and a bit of grass beyond the tall black gate, a sidewalk, cars, the road. Turn back to the room; look down.

A rectangle of grey wool carpet covers the hardwood floor between couch and windows. It’s gritty and grungy; the vacuum is not a frequent traveler here. There’s a woman on the carpet. She is alone. The man is out. What is she doing? She’s lying there. She’s looking at the leg of a chair. Earlier she stared under the couch, then at the ceiling. Now it is the leg of the chair. What else can she do? Not much. She can lie on the couch. She can lie on the bed. She can lie on the floor.

She thought the test and the doctor and the drugs would make her better. She thought that five months ago. Now she looks at the leg of the chair, dust on the floor, her hair on the carpet. Her hair, falling out, covers her hands when she touches it; it hardly matters. She runs her fingers across the carpet, collecting the hair into a loose ball with bits of wool, paper, dust. It is a satisfying object. It is perfect, this object from her home. It is what she is—detritus.

She can move, and she can lie down. She manages some laundry, a few tasks at her desk. She cannot stand still. She can sit for five or ten minutes, fifteen at the most. It is not a matter of feeling good and normal when horizontal and bad when vertical. It is a matter of bad and worse and—if she pushes, if she misjudges or overrides the inner signs and follows desire rather than need—much worse. The consequences last not hours but days, a week—under certain circumstances, indefinitely. She negotiates with the demon. She is always trying and failing to keep the nasty thing calm.

Some days she wakes to a strange sensation of well-being. “I’m better...I’m better...” she thinks—still, significantly, lying in bed. Emerging to share the good news, she stands by the desks, briefly not moving. “I can stand,” she says, “Look, I can stand. I’m getting better.” And then the hammer comes down. The thug had only paused to smoke a ciggarette; now it is on her again, and she is making for the couch.

The unthinkable has become imperative. She must do nothing. When the drugs didn’t answer, and she did not get better, she resigned the full fellowship, with tuition and stipend, just offered to her, and requested a leave of absence from graduate school. Before writing the letter she looked forward through imagined months—It will be okay, she told herself, somehow... I’ll find something to do...maybe I’ll make a quilt of the fabric scraps I’ve been dragging around for years. Believing made the necessary possible.

She rolls on her side and presses a hand to the floor. She’s getting up, getting ready to go out. It’s a grey day, drizzling and chilly. It’s a sunny, fall day—crisp, leafless. It’s just windy and indecisive today; clouds rush across the sky; warm air and cool swirl around the corners of buildings. It’s quite cold today—freezing rain, actually; a little hail fell earlier. It doesn’t matter what the weather is today, she’s going out. She does it every other day, regardless; regardless of how she feels, regardless of the weather, regardless of everything, she walks. Determination seems the only recourse.

She locks the front door behind her, descends the stairs, enters the foyer, exits the foyer, enters the courtyard, exits the courtyard, starts down the sidewalk to the lake. She must always move. When she stops at Sheridan Road, she waits on the corner for the light to change, stepping in place and pumping her calves. She crosses the road, crosses the parking lot, reaches the path. Lake Michigan isn’t wild like the Gulf of Mexico where she grew up. Planes pass overhead every twenty seconds, and the hum of the city presses nearby. But at least there is this: sand, sky, and water.

She walks the slim concrete path. She pushes against the wind and gravity. Gravity is so fond of her, always pulling. Even as she observes the people on the beach and peer, the mood of the lake and air, she watches the interior weather too. Waves of wooziness; even, heavy fatigue; diverse, sometimes desperate, sensations in her limbs. Sick, dead, empty, weak. She must keep moving, she must get up anyway, go out anyway. Determination seems the only recourse.

She sees a familiar figure approaching, a fellow graduate student. The woman sees, too, and recognizes. They reach each other, “Wow, Priscilla,” the woman says, “it’s so good to see you. How are you doing?”

Greetings, updates.

“Well,” the acquaintance says, “you look great!”