Breath & Shadow
A Journal of Disability Culture and Literature
It was another couch day for Jesse, reluctant canary in the environmental coal mine of Planet Earth. She and her chemically sensitive friends called themselves canaries, because they believed their illness was a warning about the health effects of chemicals. Like one of the caged canaries that used to warn miners of gas leaks by keeling over, their little feet pointing pathetically skyward, Jesse lay immobile on the couch.
It's a thankless job, with insultingly low pay, but at least I'm wellqualified, she thought. "Let me count the benefits: brain fog, lethargy, debilitating fatigue, depression, memory loss, digestive problems. Did I mention memory loss?" she said out loud to break the silence. It was an old joke among the MCS (multiple chemical sensitivities) community, but tired jokes seemed somehow appropriate under the circumstances.
Jesse lay crumpled like a discarded PostIt note on the leafprint couch, clutching Clark's plaid bathrobe close around her for comfort as the lethargy and fatigue weighed her down. On days like this, the only thing she felt like doing was watching TV, but she resisted reaching for the remote so early in the day. She tried repeating to herself, "I am a wonderful, worthwhile person just the way I am, I am a wonderful, worthwhile . . . ."
The garbage truck beeped outside her house, as it did every week, reminding her it was Tuesdayshe might not remember otherwise. Grateful for the centering effect of this predictable routine, Jesse tugged the worn acrylic blanket up around her shoulders, sighing with resignation at the stultifying sameness of this "job," and feeling guilty because the blanket wasn't made of an organic fiber, which would have been healthier for her. Her mind took up a familiar conflict: make do with what she could afford, or ask her partner to help with another expense in addition to the organic food, bottled water, and alternative health care she needed to survive, if not thrive. Her illness already seemed to suck up their resources like the special HEPA vacuum cleaner she also needed, but had not asked Clark to buy. Not that he ever complained or made her feel guiltyhe didn't need to, as she excelled at doing that herself. He had endured this bizarre illness and the limits it imposed on both their lives with uncommon grace and humor, in spite of the fact that they couldn't go out to movies, concerts, or other public events together. To do so would make her dangerously ill.
"I don't like the crowds, anyway," he'd say, then pick up a romantic video he thought she'd like on his way home from work. It was one of the few entertainments they could share. She didn't mind that he seldom stayed awake through a whole movie, or that he dropped popcorn on the floor. It would've been hard to justify complaining about such small things, under the circumstances.
Clark joked about her getting a job transfer to some unpolluted planet when she complained about not being an equal breadwinner (glutenfree, of course). He was one of the few who didn't treat her with kid gloves just because she was sick.
"You are such a pain in the butt," he told her, when he didn't feel like showering immediately after coming in, when they couldn't buy new furniture because of the chemicals in the materials, or when he couldn't read the Times in bed with her on Sunday morning because the ink made her sick. But the restraint in his voice said it was her illness, the gigantic elephant that lived with them, which was the real source of his frustration. Jesse supposed this was the Universe's way of balancing things out: be a canary, get Clark as a reward. She knew of many others like her who had not been so lucky.
Their relationship had gone through its ups and downs. Meeting and commiserating with other canaries had probably saved their marriage. They'd learned how to prevent what Clark called her "Exorcist episodes." Now he was used to showering and changing clothes so he could safely be with her after being in public, but it had taken them years to realize that when Jesse became irrational, accusatory, angry, or started sobbing for no apparent reason, it was from being exposed to the chemicals his clothes and hair absorbed in public places.
Some twenty years ago, Jesse's immune system had become seriously discombobulated when pesticides were sprayed at the day care center where she worked, ending any possibility of a normal life. Since then, her ideal environment would be a pristine bubble somewhere on another planet where there were no pollutants.
If Clark and Jesse needed further proof of the effects chemicals had on her, it came at an outdoor concert years earlier. Gasping for air, her right arm began to twitch rhythmically, then her head started shaking back and forth in a continuous "No," like someone with Parkinson's. She couldn't respond to Clark's frantic questions. Instinctively, he hurried her into the car and started driving to get her into cleaner air, not realizing she was reacting to a printed program contaminated with repellent used by the concert staff. Jesse had been given the program when they arrived, and it was still in her backpack. Now pale, lethargic, panting, her mouth wide open, Clark noticed her breathing was getting slower. Clark knew taking her to an emergency room was out of the question because the chemical exposures there would only worsen her condition. He hit the brakes and hastily swung the car into a parking lot, removing their shoes and Jesse's outer clothing in case they were contaminated with chemicals.
He threw their shoes and her clothes and backpack into the trunk, and headed onto the highway again, his free hand holding her steady, willing her to be OK. The windows were open, and fresh mountain air flowed into her lungs. As they drove, she gradually calmed and the shaking ceased, but they would not be able to go to outdoor events in that town again. Because of the large mosquito population and heavy use of repellent, their world had just become even smaller.
Jesse slowly picked up the receiver when the phone rang, pushing the speaker button to minimize the neurological effects of the phone's electromagnetic field. Such reactions were common for those who had been chemically poisoned. "Hi," she mumbled. "Hello" seemed like too much effort. It was her friend Nina, a fellow canary.
"If I lived in a monastery and shunned the modern world, I'd be thought of as virtuous and selfless. But because I'm sick and have no choice, I'm considered a fringedwelling lunatic. Where's the justice?" Nina said. "You sound perky, by the way."
"Uhhuh, brain fog, no energy, the usual routine. What's wrong with you?" Jesse managed to push out.
"My sister. She stopped by again without calling, and still didn't lose that toxic sludge fabric softener she marinates her clothes in. I sent her hindend right back out the door. I'm not having another seizure because she can't be inconvenienced."
"Go girl," Jesse cheered faintly.
"So she stood by a window and lectured me again about getting a job. Do you think they have any openings for drugsniffing humans at the airport? Or, with my sense of smell, maybe I could become a super herodoes that pay well?"
Jesse laughed weakly. They talked for a few more minutes, then hung up, neither having the strength for lengthy yack fests.
After their conversation, Jesse felt bolstered enough to drag herself to the bathroom, holding on to furniture and walls as she went. Thank God for friends like Nina who understood her limitations firsthand. She hadn't been as lucky with her former closest friend, Peyton, who had no obvious disabilities. Except perhaps a raging case of selfabsorption, Jesse thought.
Her face puckered as she recalled a sappy movie, "To Jillian on her Thirtyfirst Birthday," with Michelle Pfeiffer as Jillian, who, though dead, still appeared to her living husband. After her hubby became involved with a living woman, Jillian appeared, telling him she wouldn't be back, and to, "go play with the live girl!"
Jesse, now in the land of the living dead and no longer able to go anywhere with Peyton, had been replaced with others who could go shopping, have lunch downtown, and do other normal stuff. Peyton still called occasionally just to chat, mostly about herself and usually for far longer than Jesse had the energy. Jesse was always tempted on these occasions to tell her to, "go play with the healthy girls!"
On a good day, Jesse recalled Peyton's generosity and other positive attributes, and couldn't blame her for pursuing normal activities, even Jesseless ones. She just wished Peyton could understand and stop taking the limitations of her illness so personally. So far, though, only others with the condition or their partners (if they were lucky) seemed able to fully comprehend the scope of its effects.
"I am a good person and worthy of being loved." Jesse raised a wobbly arm, summoning the energy to lift the water glass from the spartan maple coffee table to her lips. She had adjusted to the fracture in her universe of losing Peyton by shifting her focus to other canaries, who, because of the illness, had also experienced rejection by friends.
Family relationships were no picnic, either. Jesse had last seen her mother and sister six years earlier when she made the trip to Virginia, against her doctor's orders, to see her Dad one last time in the hospital. She had not regained her previous level of health after that trip, and she dared not risk it again. Since then, conversations with her mother took on a familiar sameness.
"Mom, please come and visit us. It will be good for you to get away. I'm sorry I can't come down anymore, it's just too risky. I hope you understand." Jesse kept willing her mother to get it.
"Oh, I don't think it's safe to fly anymore, dear. We can always stay in touch by phone."
Jesse interpreted this to mean, "Where did I go wrong? Why can't you live next door, be normal, and give me some more grandchildren, like your perfect sister?"
"It's hard for me to travel that far anymore," her motherinlaw complained about the 2hour Amtrak ride when they asked her to visit. But "Stop ruining my son's life, and let me wear as much perfume as I like," was what Jesse heard.
She turned on the TV, surrendering to feeling pathetic, and didn't bother surfing the channels. A commercial for air freshener triggered an automatic response. "Death merchants," she muttered. "Isn't it enough you've already brainwashed the entire country into dousing themselves and everything they own in scented chemical crap? Do you HAVE to keep inventing new ways to poison us?" More tired now, she realized the futility of her rant. After all, this was the land of opportunity, or was it opportunists?
Oh, good, fashion makeovers. My favorite, she thought, her spirits lifting a little. But today, even her favorite show seemed like a letdown. "Hey, she looked better before the makeover. Nobody that short should wear diagonals!" she protested to the TV.
Drowsiness overtaking her, Jesse thought of spring, but right now it was December in New England, and anything but warm. She muted the TV, shifting her position, which caused the ancient couch springs to creak. She took the oxygen mask from its hook on the tank next to the coffee table, turned the dial to two liters, took a deep breath, and closed her eyes. Like many of her sensitive friends, Jesse often fantasized about living on a remote island somewhere beyond the reach of chemical pollution. She would live there with Clark and a community of other sensitives and their partners, and never be forced to breathe another atom of cologne or air freshener as long as she lived. She started to doze off.
It was another sunny day on her island. Down the beach, several friends saw her and waved. The clean ocean air filled her lungs, energizing her. The pure white sand warmed her feet. Jesse took some sunflower seeds from her pocket. A brilliant yellow canary landed on her outstretched palm. It pecked at the seeds she offered, tickling her hand, then flew along the beach ahead of her, its feathers glowing in the sun, as she ran through the surf to join her friends.
Dorothy Baker, who grew up in a small North Carolina town, has been writing since she was in third grade. Her short stories, film review, and essays have appeared in "Our Toxic Times" and Breath and Shadow. She has lived in New England with her life partner for the past 25 years and expects to adjust to the winters there any time now.
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