Presence

by Maureen McHugh

  “I want to go out,” he says, again and again, long after she stops answering him. He finally sits and watches five minutes of television but then he gets up and goes back to the door. “Let's go home,” he says this time, and when she doesn't answer, he runs his long fingers like spiders up and down the edge of the door. He sits, he gets up and stands at the door for minutes, twenty, thirty minutes at a time, until she is blind with fatigue and her eyes burn with tears and she finally shrieks, “There's no way out!”

  For a moment he looks at her, befuddled. The he turns back to the door and says, querulously, “I want to go out.”

  At one point she goes to him and folds both his hands in hers and says, “We're both trapped.” She is dizzy with fatigue but if she cries he will just get worse. He looks at her and then goes back to searching the door, moth fingers fluttering. She turns out the light and he howls, “Oww-ow-oww-ow—” until she snaps the light back on.

  Finally, she shoves past him and locks him in the room. She goes down to the lounge and sits down on a couch, pulling her bare feet up and tucking them under her nightgown. The lounge is deserted. She thinks about sleeping here for a few hours. She feels vacant and exposed. She leans her head back and closes her eyes and there is the distant white noise of the ventilation system and the strange audible emptiness of a big room and she can feel her brain swooping instantly into a kind of nightmare where she is sliding into sleep thinking someone is sick and she needs to do something and when she jerks awake her whole body feels a flush of exhaustion.

  She can't stay here. Is Gus howling in the room?

  When she opens the door he is standing there, but she has the odd feeling he may not have noticed she was gone.

  He finally lets her talk him into lying down around 3:15 in the morning but he is up again a little after six.

  She asks the next day if it is the stuff they've injected, but of course, it's not. It's the strangeness. The strange room, the strange place, the Alzheimer's, the ruin of his brain.

  The social worker suggests that until they are ready to insert the cellular material and stimulate neural growth, Gus should go to a nursing facility for elderly with dementia.

  Even if she could afford it, Mila thinks she would have to say no. When they resculpt his brain, he will be a different person, but she will still be married to him, and she wants to stay with him and to be part of the whole process, so that maybe her new husband, the new Gus, will still be someone she loves. Or at least someone she can be married to.

  * * * *

  Mila is lucky they can afford this. It is an experimental treatment so insurance doesn't cover the cost. She and Gus have money put away for retirement from his parents and hers, but she can't touch that or capital gains taxes will go off, as her accountant says, like a time bomb. But they can sell their house.

  The old house sells for $217,000. The first half of the treatment is about $74,000. The second half of the treatment is a little over $38,000. Physical therapy is expected to cost a little over $2,100 a month. Home health is $32,000 through an agency (insurance will no longer pay because this is an experimental treatment.) That doesn't include airfare and a thousand incidentals. At least the house is paid off, and the tax man does some finagling and manages to save her $30,000 for a down payment on a little townhouse.

  It has two floors, a postage sized back yard, and monthly maintenance fees of $223 a month. Her mortgage is $739 a month.

  It has a living room and kitchen downstairs and two bedrooms upstairs. The carpet is a pale gray, and her living room furniture, which is all rich medieval reds and ochre and ivory, doesn't go well, but it doesn't look bad, either.

  “Why is our couch here?” Gus asks plaintively. “When can we go home?”

  * * * *

  One evening when he says he wants to go home she puts him in the car and starts driving. When Dan was a baby, when he wouldn't go to sleep, the sound of a car engine would sooth him, and this evening it seems to have the same affect on Gus. He settles happily into the passenger seat of their seven-year-old Honda sedan, and as she drives he strokes the armrest and croons. She's not sure at first if the crooning means he's agitated, but after awhile she decides it's a happy sound.

  “You like going for a ride?” she says to him.

  He doesn't answer but he keeps on crooning, ‘ooo-ooo-ooo-ooo'.

  * * * *

  Another night she wakes up alone in the bed. Alzheimer's victims don't sleep much. Used to be that if Gus or Dan got up in the night she heard them, but she's pretty tired these days.

  She finds him downstairs in the kitchen, taking the bowl of macaroni and cheese out of the refrigerator. It's covered in foil because she's out of plastic wrap. “Are you hungry?” she asks.

  Gus says, “I can take care of it.” His tone is ordinary and reassuring. He puts the bowl in the microwave.

  “You can't put it in the microwave, honey,” Mila says. “You have to take the foil off the top first.” She hates that she only calls him ‘honey’ when she is exasperated with him, and when she doesn't want to make him angry. It feels passive aggressive. Or something.

  Gus closes the microwave door and pushes the time button.

  “Gus,” she says, “don't do that.” She reaches past him and opens the microwave door, and he pushes her away.

  “Gus,” she says, “don't.” She reaches for the door and he pushes her away again.

  “Leave it alone,” he says.

  “You can't,” she says. “It's got foil on it.” Gus is an engineer, for God's sake. Or was.

  She tries to stop him, puts her hand on his forearm, and he turns to face her, his face a grimace of anger, and her pulls his arm back and punches her in the face.

  He is still a strong, tall man and the punch knocks her down.

  She doesn't even know how to feel it. No one has punched her since she was maybe twelve, and that was a pretty ineffective punch, even if her nose did bleed. It stops her from thinking. She is lying on the kitchen floor. Gus pushes the start button on the microwave.

  Mila touches her face. Her lip is cut, she can taste the blood. Her face hurts.

  There is a flicker as the microwave arcs. She doesn't have it in her to get up and do anything about it. Gus frowns. Not at her, at the microwave.

  Mila sits up and explores her face. One of her teeth feels wobbly to her tongue. Gus doesn't pay any attention, he's watching the microwave. He's intent. It's a parody of the engineer solving a problem.

  The microwave starts arcing in earnest and Gus steps back.

  Mila sits on the floor until the microwave starts smoking and only then does she get up. She doesn't even feel like crying, although her mouth and cheek hurt. She pushes cancel on the microwave and then pulls it out of the alcove and unplugs it. She leaves it half pulled out and goes over to the sink and spits bloody saliva. She rinses her mouth and then washes the sink out.

  “Go on up to bed,” she says.

  Gus looks at her. Is he angry? She steps back, out of range. Now she is scared. He's not a child, he's a big man. Is he going to be upset with her because he's still hungry?

  “I'll heat you up some soup,” she says. “Okay?”

  Gus looks away, his mouth a little open.

  She grabs an oven mitt, opens the smoking microwave carefully and takes out the macaroni and cheese. The ceramic bowl has cracked in half and the foil is blackened, but she holds it together until she can throw it out. Gus sits down. She takes the microwave outside on the grass. She doesn't think it's burning inside, but she isn't sure. She can't sit and watch it, not with Gus unsupervised. So if it starts to smolder, it starts to smolder. The grass is damp.

  Back inside she finds Gus in the living room eating ice cream out of the carton with a serving spoon. There is ice cream on him and on the couch.

  She's afraid to go near him, so she sits down on a chair and watches him eat.

  She cannot shake the feeling that the man in front of her should not be Gus, because th
e Gus she has been married to would not, would never, hit her. The Gus she was married to had certain characteristics that were inalienable to him—his neatness—almost fussiness. His meticulousness. His desperate need to be good, to be oh so good. But this is still Gus, too. Even as the ice cream drips on his legs and on the couch. What exactly is Gus? What defines Gusness? What is it she married? It is not just this familiar body. There is some of Gus inside, too. Something present that she can't put her finger on, maybe only habits of Gusness.

  Later, when he goes up to bed, sticky with ice cream, she throws out the carton even though it is still half full. Outside, the microwave sits inert and smelling faintly of hot appliance. She goes upstairs and goes to bed in the other bedroom.

  She tries to think of what to do. The Transglycyn is eating out the plaque, but he won't start to get better until they replace the neurons and the neurons grow and they don't even go to Atlanta until next month. It will be three months after that before she begins to see any improvement.

  The old bastard. Alzheimer's is the bastard.

  She doesn't know what to do. She can't even afford a leave of absence at work. Saturday, she thinks, she'll hire a sitter and then she'll rent a hotel room and sleep for a few hours. That will help. She'll think better when she's not so tired.

  * * * *

  At work, Mila's closest friend is Phyllis. Phyllis is also a quality engineer. More and more engineers in QA are women and Phyllis says that's why QA engineers make $10,000 a year less than design and production engineers. “It's like Human Resources,” she says. “It's a girl-ghetto of engineering now.” ‘Girl-ghetto’ is a little ironic, coming from Phyllis who is 5'2", weighs close to 200 lbs, and who has close cut iron gray hair.

  Phyllis comes by Mila's cubicle at midmorning and says, “So how's the old bastard.” Phyllis knew Gus when he was still Gus.

  “A real bastard,” Mila says and looks up away from the computer monitor, up at Phyllis, the side of her face all morning glory purple.

  “Oh my God!” Phyllis says, “what happened?”

  “Gus decked me.”

  “Oh God,” Phyllis says. In the cafeteria, sitting with a cup of coffee in front of her she says dryly, “You really look quite amazing,” which is a relief, because Phyllis’ initial shock, her initial speechlessness was almost more than Mila could bear. If Phyllis can't joke about it...

  She does not say, ‘You've got to put him in a home.’ The other thing Phyllis does say is, “Gus would be appalled.”

  “He would,” Mila says, so grateful. “He would, wouldn't he.”

  * * * *

  They go to the Cleveland Clinic and Gus is anesthetized and some of his bone marrow is extracted. The frozen bone marrow is shipped to Atlanta so they can extract undifferentiated stem cells to inject in him to replace his own missing neurons.

  After the anesthetic he is agitated for two days. His balance is off and his hip hurts where they extracted the bone marrow and he calls her a bitch.

  Two weeks later they go to Atlanta and the procedure to inject the undifferentiated cells and virus trigger are almost identical to the first procedure. Gus swings at her twice more; once at the clinic in Atlanta and once back in the townhouse, but she's watching because she's afraid of him now, and she gets out of the way both times. She warns Iris, the new home health. (Cathy left because her boyfriend has a cousin in Tampa who can get him some sort of job.) Iris is in her thirties, heavy and not friendly. Not unfriendly. Iris says Gus never gets that way around her. Is she lying? Mila wonders. And then, why would she?

  Is Iris saying that Gus likes Iris better than Mila? Mila always has the feeling that Iris thinks Mila should be home more. That Mila should be taking care of Gus herself.

  Gus likes car rides, sometimes. They climb into her car.

  “Where are we going?” he asks.

  “To therapy,” she says. He'll start to get agitated now, she thinks.

  But he puts the window down and the trees go past, and he leans his head back and croons.

  “Are you happy, Saxophone Man?” Mila says.

  Everything is in stasis now—he grows no better but no worse until something happens with the cells they put in his brain. Three months until they see any difference, at the earliest. But now, one month after they injected new cells into his gap ridden brain, they will do some tests to benchmark.

  It all makes perfect sense. Too bad we never benchmark when we're healthy, she thinks. Maybe she should have herself benchmarked. Mila Schuster, cognitive function raw scores at age fifty-one. Then if dementia got her in it's jaws, they could chart the whole cycle. Hell, benchmark the whole population, like they benchmark women with mammograms between the ages of forty-five and fifty.

  Unless it has already started. She forgets things at work. She knows it is just because she is so worried about Alzheimer's. Senior moments, Allen, one of the Home Health used to call those times when you stand in the kitchen and can't remember what you came for.

  If she got Alzheimer's, who would take care of her? She and Gus would end up in an institution, both in diapers and unaware of each other.

  Gus croons.

  “Saxophone Man,” she says. There is something dear to her about the ruined Gus, even through all the fear and the anger and the dismay. This great ruin of a fine brain. This engineer who could so often put his finger on a problem and say, ‘There. That's it. The higher the strength of the plastic in the handle, the more brittle it is. You want to back off on the strength a bit and let the thing flex or it's going to shatter. Particularly if it sits in sunlight and the UV starts breaking down the plastic.’

  What a marvelous brain you had, she thinks. You'd say it and I'd see it, everybody would see it, obvious then. But everything is obvious once you see it.

  The therapy is done at a place called Baobab Tree Rehab in a strip shopping mall. The anchor store in the mall is a Sears Hardware, which is Sears with just tools. Inside, Baobab Tree Rehab is like insurances companies and mortgage companies—there are fichus trees in pots in front of the windows, and rat's maze cubicles like there are in older office buildings. Once, years before, Gus was walking with Mila at work when suddenly he crouched a bit so he was her height—she is 5'3"—and said, it really is a maze for you. That was the first time she realized he could see over the tops of the cubicles, and so they didn't really work like walls for him.

  Gus is looking over the cubicles now, too.

  Their therapist is a young. She comes out to meet them. “Mr. Schuster, Mrs. Schuster, I'm Eileen.”

  Mila likes that she talks to Gus. Gus may or may not care, but Mila figures it means that they think about things.

  Eileen takes them back past the cubicles to a real room with a table on it. There are shelves on the wall.

  “Mrs. Schuster,” she says, “I'd like you to sit in with us this first time.” Mila has not even thought about not sitting in, but now, suddenly she longs to be allowed to leave. She could go for a walk. Go take a nap. But Gus will probably get upset if she leaves him with a stranger.

  And nearly everyone is a stranger.

  Gus sits down at the table, bemused.

  Eileen takes a puzzle with big wooden pieces off of the shelves and says, “Mr. Schuster? Do you like to do puzzles?”

  Gus says, “No.”

  Did Gus like to do puzzles? Isn't engineering a kind of puzzle? Mila can't remember Gus ever doing regular puzzles—but they were so busy. Their life wasn't exactly conducive to sitting down and doing puzzles. Gus built telescopes for awhile. And then he built model rockets. He made such beautiful rockets. He would sit in front of the television and sand the rocket fins to get the perfect airfoil shape, saw dust falling into a towel on his lap, and then he would glue them to the rocket body using a slow setting epoxy, and finally, when they were about set, he'd dip his finger in rubbing alcohol and run it down the seam to make the fillet smooth and perfect. He made beautiful rockets and then shot them off, risking everything.

&
nbsp; “Let's try a puzzle,” Eileen says.

  * * * *

  “Mila?” It is Gus on the phone.

  “I'll get back to you,” Mila tells Roger. Roger is the manufacturing engineer on the project she's working on.

  “Look,” Roger says, “I just need a signature and I'll get out of your hair—”

  “It's Gus,” Mila says.

  “Mila, honey,” Roger says, “I'm sorry, but I've got four thousand parts in IQA.” He wants her to sign off on allowing the parts to be used, even though they're not quite to spec, and she's pretty sure he's right that they can use them. But her job is to be sure.

  “Mila,” Gus says in her ear, “I think I've got bees in my head.”

  Roger knew Gus. And Roger is a short-sighted bastard who doesn't care about anything but four thousand pieces of ABS plastic pieces. Actually Roger is just doing his job. Roger is thorough.

  “I promise it's okay,” Roger says. “I assembled twenty of them, they worked fine.”

  Mila signs.

  “Mila?” Gus says. “Can you hear me? I think I've got bees in my head.”

  “What do you mean, honey,” she says.

  “It itches in my head.”

  Gus isn't supposed to feel anything from the procedures. There aren't nerve endings in the brain, he can't be feeling anything. It's been four months since the second procedure.

  “It itches in your head,” Mila says.

  “That's right,” Gus says. “Can you come pick me up? I'm ready to go home now.”

  Gus is at home, of course, with Iris, the home health. But if Mila says that he's at home, Gus will get upset. “I'll be there in awhile to pick you up. Let me talk to Iris.”

  “My head itches,” Gus says. “Inside.”