She closed the door behind her, leaned against it for a moment, and then forced herself to sit down on the unmade bed. The room was shadowy. Aside from the glow of the bedside lamp, only the triangle of closet light from its half open door illuminated the folded ironing board. It leaned accusingly against the wall, beside this week’s collection of dirty school clothes, soiled sheets, and wet towels from this evening crammed into the blue Rubbermaid laundry basket. Still life as volcano, she thought, noticing the sleeve of her new silk blouse reaching over the edge and dangling beneath the muddy pink Oshkosh overalls splayed out under the towels.
For the past three years she’d avoided wearing anything expensive that required a dry cleaner, and evidently she should have waited another three before attempting to dress like her colleagues. Most of her clothes, even the professional clothing she wore to work ended up with spit-up on the shoulder or play dough hand prints on the longer skirts she wore to compensate for what remained of her figure after the fourth exhausting pregnancy.
She was forty two. The youngest child had followed the one before by only sixteen months, and the two of them were sleeping down the hall in separate rooms, a thought that always carried the tag, “Thank God”. Had she not loved their bedtime rituals, the bubble bath, story time and cuddles, she most likely would have given up already.
Given up. How did one do that? Was there somewhere a halfway house for mothers who gave up before their children finished the requisite growing up all children have to do? She envisioned with pleasure a kind of heavenly Four Seasons hotel with frumpy haggard middle aged women lounging around a pool, each wearing sound blocking head phones, reading books instead of magazines, getting pedicures, or talking, unmolested, on the phone. She realized she couldn’t even eat a meal from start to finish without something happening to re-open the wound she carried inside her head all day, the one that dictated instructions that enabled her to put one foot ahead of the other and keep going.
She wanted to take off her shoes, crawl underneath the comforter, and pull it up over her head, just for a little while, but she knew at this hour that was not an option, so she sat, hands on the edge of the mattress, to steady herself, and decided not to think about the mess in the kitchen, or the stack of college essays awaiting her comments, or why her husband found it so easy to sit in his chair in the living room reading the paper. She knew, on some level, she must be entitled just to sit there on the bed, just for a little while.
Their bedroom was quiet. His clean white shirt hung on the back of the rocking chair resembling, she mused, a therapist, or possibly a judge, waiting for her to say something, to open up and let out all the snakes. Fat chance. She was keeping herself together with imaginary rubber bands as it was, and any one of them could snap and everything inside her would fly out and away. The last thing she could possibly afford would be to let her feelings out. Maybe someday there would come a time for that.
She heard a theatrical laugh from across the hall, almost a cackle, followed by a thud, as if something heavy had dropped hard on the floor. She listened, trying to decipher what was going on. Another crazy laugh followed by coughing, the kind of asthmatic, hacking, repetitive unstoppable cough that grabbed her full attention, made her hold her breath and listen for the end of it. It stopped. Then all was quiet. She waited, expecting to be summoned.
Overhead, she heard soft footsteps and she knew the younger of her older daughters would be turning up the music so she could study. Whatever she did up there in her exotic attic bedroom, probably with pen and paper, most likely was buried under a pile of books. A good mother would probably pay more attention or at least apply forensic scrutiny to a fourteen year old girl who wore all black and had a bedroom like some kind of elegant steam punk arcade, but this daughter was no longer really a child, and she seemed most content when she could withdraw from the chaos below and be left to her own devices. It seemed as if the shirt draped on the shoulders of the rocker questioned such a rationalization. Ignorance, even out of desperation, is no excuse.
Outside the bedroom, the door across the hall, flung open, banged against the bed frame behind it. After a pause, she heard the clunking footsteps of her firstborn pounding toward the bathroom, and the slap of her hands against the wall as she made her way past the baby’s room. Please don’t wake him up, she thought, in a silent plea through the wall to the six foot lumbering skeleton of her beautiful firstborn daughter.
The foot falls continued to the end of the hall, more slowly, if that were possible, as if the girl were equally invested in keeping the delicate peace, despite needing a bath. Whether she would take one, or attempt to shower, was up for grabs. If she were inclined to have a bath, she would need help turning on the water, getting into the tub, holding the soap, and climbing out again. The tub was short for her lanky frame, and her legs without the braces were becoming useless.
Ever since fifth grade, her daughter hated taking off her clothes in front of anyone, and while it obviously had to be her mother who would run the bath and struggle to get her in and out, she resisted asking her mother for anything at all. Even more, she hated it when her mother volunteered to help. Being unable to eat by herself, or dress herself, or use her hands to snap or button or tie was insult enough at the age of seventeen. She couldn’t even pronounce the word “help” without drooling.
The worst part, everyone knew, was that this horrible mysterious disease had not affected the girl’s intellect; she was just as brilliant as she had been at the age of ten, when her test scores left the charts, but now she knew exactly what was happening, and could no longer hide the involuntary twitching of her hands, or sudden flapping of her arms. Tremors defied sitting on her hands, and piercing vocal tics, like whoops or shrieks escaped her when she watched romantic movie scenes.
Unwanted, unexpected shrieks out of the blue made going out to movies no longer possible. Going anywhere at all was difficult at best, because of the effect she had on people with her involuntary waving arms, and slurred obscenities rolling out of her mouth, and drool she could not wipe away. Her bones broke. Her breasts, at the age of ten, grew monstrous with marbled stretch marks, and she had to eat continuously to keep from losing weight. Once determined to conceal how fast her body was declining, she was now too tired to keep pretending, and too angry to allow the family any pretext of a normal life, had that been possible.
She had skipped the bath. Now she was making her way back up the hall, her hands slapping the wall on one side for balance, and on the other, bumping against the banister, aware from past experience, it would not likely stop a fall if she allowed herself to lean too hard against it. Like a car on an inclined icy street that crashes into one parked vehicle, then slides across to hit another, every time she left her room she seemed like a drunk teetering and careening out of a bar.
In the master bedroom, her mother exhaled when the daughter’s door closed, relieved, but charged as guilty having dodged the battle, hiding in her room. She should have run the bath and helped her wash her hair. She should have put out clean pajamas, and stood by to help her brush and floss her teeth. Any decent television mother would have done that, and the helpless television invalid would have welcomed the attention, maybe even shown inklings of gratitude to have been cleaned up and cared for, loved. Nowhere on TV or in the books she read or movies did the writers tell the truth; that love doesn’t cut it, that sick people are sick of being cared for, despise the ones who care for them, and often try to find ingenious ways to kill themselves to get out of one more bath at the hands of a healthy fully dressed person who has better things to do.
To her beautiful bright daughter, living like this in the presence of a family, people who had friends, came home from soccer practice, or the mall, or simply had the skills to change the channel or to hold a can of Coke without it spilling on the rug, was simply cruelty. Her life was so incomprehensibly unfair, and so humiliating, that anger, even rage, did not begin to cover the distance between the inexplicable illness she had been saddled with and the vitality of everyone around her. Family to her became a cosmic joke, at best, but far more often family appeared to be an insensitive conspiracy of pointless prison guards. All the mother had in common with her daughter now was the acute awareness that each of them was worse than dead already. The girl conveyed that understanding every time they had to interact, and she despised her mother’s efforts to pretend it was untrue. Between the two of them, it was no longer possible to look each other in the eye.
As she sat on the edge of the bed, avoiding the silent condemnation of the shirt, she gave up. While she’d believed in God up to the age of five, her years among the academics had embarrassed out of her any true attempt to recognize validity in bedside prayers. The body she occupied was disconnected from her thoughts, simply the vehicle to keep her family in motion. What was left of her raged every day, disguised in often inappropriate dark humor.
She could not truthfully address her thoughts to God, so she appealed to Anybody out there in the universe who might have answers, any cosmic font of enlightenment from which some inspiration might produce results. While it seemed unlikely she, of all inadequate and failing human beings would win a miracle, she would try anything. As she prepared to ask “Whomever” for her miracle, she remembered, as a child, the list of requests she used to send in that direction just before she fell asleep, none of which ever showed up in the morning. She had learned not to be too specific, nor too greedy. Now she only could imagine God through the closed door, standing at His end of the hallway, laughing at her, plotting with her daughter, like a pair of thugs. With effort, she tried to form a truly responsible prayer, one that wasn’t asking for too much, and one that was not overly self serving. Her mind envisioned her daughter, well enough to walk again, despite the damage visible in the MRI’s, the peeling and disintegrating nerves, and the spots where her brain had begun to disappear. She thought about the twisted rage and venom this invasion had inflicted on her daughter’s personality. She could not imagine at that moment who this girl might have become before her body turned her into this, let alone who she would become if she survived. If she lived, and she remained the way she was this evening, when she kicked her dinner across the room and shouted “FUCK YOU” over and over until her mother left the room, who could possibly take care of her?
There were three other children in the house who needed a mother. She had learned to shut off all her feelings just to get through every day, but now she felt an overwhelming heaviness, a sickness, more than nausea, a grinding so deep in her gut that it felt like a root pulling her down deep into the ground. She had no difficulty comprehending hell.
She sat on the edge of the bed in the dark and for the first time, admitted to herself that she had nothing left to give this child. Her own hands, her arms, her legs and feet seemed disconnected from the torso that encased the chasm in the center of her body; a black hole that had grown, extending now from where her hip bones reached up for her ribs to where her ribs encased the emptiness. She looked inside herself in vain to find some kind of foothold. The babies, the last two children, had filled up that space, one after the other, creating a kind of buffer when there was no simple cure in sight. She had been able to set grief aside, the happy distraction of pregnancy serving to temper the unthinkable, while she learned how to read the foreign language of medicine, multi-syllabic diseases on the Internet involving loss of motor control, deterioration of the muscles in a ten year old female, abnormal metabolic changes in an eleven year old girl who was 5’11” and had grown an inch in three weeks. Nobody knew what to do with a bright child who loved school but could not hold a pencil or sit up in class. No one could explain why a well behaved and modest twelve year old girl would suddenly accept the physical attention offered by a bunch of eighth grade boys, and then go home to cut herself and swallow random pills out of the cabinet.
Needing to hold down the job that fed and housed the family, one that covered the mounting costs of hospitals and travel, she avoided even thinking about all that had come unraveled since they were married. It was too difficult to be at work each day, imagining what might be taking place at home. He was understandably worn out, attempting to take care of two in diapers, not to mention this two-time step teenager with disappearing dad distress. Despite his best intentions, all the housework piled up waiting for her every weekend. She had to acknowledge, if only to herself, that work on Monday morning was a genuine reprieve.
She remembered getting to her office, where things were lined up and laid out exactly where she had left them, and everyone who came through the door was kind, respectful, and encouraging. All day, she could be normal, go to lunch with others like herself, have coffee, and feel capable, until 4:00 when she would have to leave, and face whatever new development awaited her at home.
In the corner of the office a cardboard box concealed hospital discharge notes reporting test results and comments from the many specialists brought in. When she had half an hour without classes, meetings, or the other welcome distractions provided by her job, she would sometimes grab a medical report, and Google the findings to see if she had missed some clue, or if someone out there had discovered something relevant. These searches rarely led her anywhere, but there was, at least, some small relief in doing something for her daughter, and it made up for entire days when she would get so wrapped up in her job that everything else in her life would seem to disappear.
This afternoon, though dreading opening the box, she knew she had to reread the doctors’ notes, having been in shock three days before, when they explained what they knew, and did not know. She could, by now, identify the words, but in the context of her daughter, none of it made any sense. As always, she began to read, and practiced breathing slowly. But inevitably once she read beyond a paragraph or sometimes two, inevitable nausea and sweating would obscure the meaning of the words. No two specialists appeared to look at, or to see the same child from one visit to the next. It was the blind men who described her elephant.
None of them had seen her daughter as she was at home; lethargic, angry, screaming or swearing, and totally absorbed in the act of being obnoxious. In the presence of an audience of doctors, especially the young handsome ones, all of whom found her fascinating, she held court. She performed for them, with long words she had picked up at the hospitals she’d visited. She joked with neurologists by trying to touch their noses. She anticipated questions they were going to ask, and had a quip prepared. It was her time to shine, and she saved up her energy to dazzle them with one liners about her various symptoms. She told them she wanted to be a stand up comic, but she couldn’t stand up. Anything her mother tried to interject was swiftly countered as if it were a fabrication used to keep this girl in bed.
At the bottom of the box were discs of MRI’s and CAT scans, and blurry pictures of biopsy results revealing only damage, never sources of that damage. There were graphs of nerve conduction studies that recorded lengthy pain inducing sessions to see how much electricity the child could feel in her extremities. Each of these reports told everything they knew and yet, told nothing; only what she didn’t have, and what she may not ever have again. The child reported once that she had seen the doctor crying with her when he performed his “Failed Electrocutions”.
Her lurching gait and unpredictable behavior brought out the worst in classmates. To her face, they feigned respect, especially under the teacher’s eye, but then behind her back they would take turns trying to walk the way she did, their hands clenched backwards, grinning stupidly. After awhile they would ignore her altogether, her head on her desk, unable to respond coherently.
When the winter formal was announced, she had insisted on attending. There was a boy she had a crush on, and she asked him to go with her. He said he would call her, and apparently she thought that was a yes. Large black high top sneakers proved the only shoes that fit over leg braces, so she wore her sister’s flouncy black short formal, and they added pink streaks to her hair to punk it up a little. No one came to pick her up. After waiting for an hour, her step father escorted her. She could not find the boy there, and before long she decided dances were ridiculous, and they came home.
She did not return to school after the holidays, but stayed up in her bedroom, listening to her step father and the toddlers downstairs, or she lay on the living room couch watching marathons of Star Trek videos. She couldn’t hold a book. She was allowed to take her SATs lying in bed, and she was not surprised to get back decent scores. Nobody believed she would live long enough to graduate or go to college, but the school district sent her a tutor so she would know school hadn’t given up on her.
She allowed the tutor to read to her as long as she could choose the books. The tutor wouldn’t read the Bell Jar or Lord of the Flies. They both pretended she was learning what she’d need to know in college. Both of them were well aware she already knew more than she would need to know for the rest of her life. The tutor and the girl seemed to enjoy each other’s company, and while her mother welcomed this, she was, deep down, disgusted with what, in her heart, she only could identify as jealousy.
It was quiet in the hallway, and still quiet in the room across the hall, except for the infrequent click of a computer key. She listened hard, but only the occasional click came through. She knew the girl was bent on writing a screenplay for the next Star Wars adventure, one letter at a time, whenever she had saved up enough energy to write and could control one finger of one hand by holding one hand with the other one. She was on something like page 57. When she got tired of trying to write, she occupied her time by hanging from a ladder by one elbow, on the landing of the stairs, and painting one entire wall, between her room and her parents’, with images of heaven, hell, and various ascending bodies of wizards, cosmic symbols and the weather that collected them into a single mural. The more her body disintegrated, the more amazing energy came from her mind, and the more she seemed to answer to the expectations of a voice her mother could not recognize.
There was nothing she could think of to say to this child. She couldn’t even cry. Nor could she get up off the bed. She was stuck sitting there as if she were completely petrified. Deep in her silence she envisioned God, not as the bearded old man sending cryptic texts and tweets to fans all over the universe, but as if he were a piece of malware she herself had planted at conception, some corrupted piece of DNA methodically devouring her daughter’s body, a code-born virus with an in-bred appetite for irony. The child across the hall was too far gone to bring her back and have her well again. If she survived due to a cure at the eleventh hour, so much of who that little girl had been was irretrievable. At best, she would continue living as the clever monster she had come to be, the beautiful mad woman in someone’s attic; most likely their own.
The medical profession had no name for what was wrong with her, so they began to call it “Caroline’s Disease”. After the last expert, of the last of seven major hospitals on the East Coast, not to mention colleagues from across the country, had run all the tests they had to run, and had kept her there for observation for two weeks, the head of the Neurology Department had sat down with the two of them. With disappointment, he confessed he still could not provide a proper diagnosis, but that at the rate the nerves and muscles were declining, she would likely need a wheel chair in the not so distant future. “But,” he said, “other than that, she certainly can lead a normal life.”
They both had looked at him, confused, and as the child sat on the examination table, her mother asked the doctor to come with her, to the far side of the room. As he stood next to her, a little cautious as to what she had in mind, she asked him to take one more hard look at the child ten feet away and reassure her that her daughter would still be alive in three weeks.
The girl on the table was extremely thin, with sunken eyes. Her face, absent of color unless slightly greenish, lacked all animation. It was as if she had completely lost her third dimension. Even her sandy hair lay lifeless on her shoulders. Toothpick legs dangled off the edge, and her hands jumped, and then settled, twitching, in her lap. The doctor blanched, and asked the mother quietly to step out into the hall.
He seemed shaken, as he confessed he had not seen her, seen her in the way they been looking at her just then. He had been, as a neurologist, concerned about her legs and her mobility, but clearly, now, he saw the whole child, and he seemed about to break down.
“There is something bigger going on here, and I don’t know what it is.” He looked around, as if to think a moment. “I can’t give you any hope, ” he said, “but I won’t give up trying, even if I have to go back to square one, and see what’s going on here. ” He could not go on, and there was nothing useful he could say, and so the teenager was discharged, and sent home without any follow up appointment.
In the car, her daughter asked what was supposed to happen next. Running a red light as she turned on the radio, she angled her face slightly away. There was no way to put in words a death sentence that might not happen, to a girl who was still into unicorns. The seven hour drive was spent in silence, broken up by landscape observations and fast food, stops for gas, and finally a silence that revealed an understanding so unspeakable as to defy communication. She wondered if she could postpone acknowledgment, even to herself, pretending for the moment that she really didn’t know. Then they might reach home and be able to go back to how it was before, no certainty negating every effort to pretend to do what living people do. She was grateful when her daughter finally fell asleep, or at least pretended to.
Over the next three days, her daughter spent the time writing a letter to her best friend whom she hadn’t seen in four years, but who knew her when she had begun to show the signs of illness. She produced it for her mother to put in the mail. The letter, flawless in its execution, was a short apology that she was probably going to die before they got to see each other, and she was sorry because Megan was such an amazing friend. This afternoon, her mother had dispatched it, with a note enclosed for Megan’s mom, apologizing for not knowing what to say.
It was only 9:00 PM, she noticed, sitting on the bed, alone, luxuriating in the time she’d stolen to be by herself. She heard the mantra that had kept her on the rails over the past five years, a soft repeating chant that came to mind, one that sometimes changed a little, but encompassed what she did not have to understand. Her job was just to love this child. She did not have to know what was to come, to love this child. She did not have to see what was so wrong to see what was so wonderful about this child. She did not have to be as wonderful, to love this child, as she wished she could be. Those words would roll through her, sometimes silencing the terror, sometimes getting lost in spectral grief, but now they seemed to surface to her lips and formed a prayer.
“Please save this child, or if you cannot save this child, please save the rest of us.” Her words came out, and shocked her, then evolved into a terrible self loathing. She knew, for the first time, she had lost hope for any honorable deliverance from this nightmare. Hope, she thought, requires energy and some slim evidence of reason, even if it’s anecdotal. Clinging to the side of the mattress, she searched inside herself, inside the black hole that now defined her own humanity, but there was no sign of life, no evidence of any human feeling. She was gone. She could not bring herself to look outside her shell, so she slipped off her shoes and pulled her legs up underneath the soft folds of the duvet, drinking in the scent of pillows as if she could stop time by refusing to exhale.
The Poet Laureate of her village of 65 people, Deborah C. Thomas, when she isn’t writing, works with her community in Cape Meares, Oregon, preparing for the Cascadia Subduction Zone Earthquake and Tsunami. Her current work in progress is a novel meant for beach reading to pass out to the hundreds of unprepared visitors who might get stuck there. Otherwise a fairly laid-back Netflix and You Tube couch potato when it’s raining, she’s a painter, cook, and history buff, indoors, and in the summer, swims and kayaks.
© 2019, Deborah C. Thomas