Hasanthika Sirisena
lady
We don’t have a name for what is wrong with my mother. We only witness the symptoms. Coughing fits rack my mother’s tiny frame. Her body seizes and contorts as she tries to force out the air. She can’t breathe and her voice reduces to rasps. She complains of pain, a crescent shaped stabbing sensation at the base of her ribcage. Her eyes water as she wills herself to stop coughing, to stop the involuntary muscle contractions. I watch, helpless each time: a slender, electric wire snakes its way from my gut, and coils at the base of my throat, a sensation I associate with empathy. But, my mild discomfort does not compare to my mother’s visible and considerable pain. I ask if she wants a glass of water. I know the answer. She can’t hold a glass steady enough to drink. Water doesn’t help anyway, since she finds it hard to swallow between coughs. She wears a diaper because during these coughing bouts she loses control of her bladder and the leaking embarrasses her. Later, I empty from the wastebasket blood-splattered tissues. Their fragile, crumpled remains remind me of decorative carnations.
***
The first production of Lady Windermere’s Fan has finished and the audience cheers and claps. They call Oscar Wilde’s name. Outside the St. James’s Theatre, the atmosphere is cold, all mist and gloom—characteristically London. On the street, the steady beat, thick and wet, of horse hooves and the trundling of the hansom cabs clogs the night. Inside, the air is crisp, made animate by the hum of electric lights. The bulbs and fixtures exude a blue scent, like chlorine disinfectant, the odor that precedes an electrical storm. This only lends to the feeling of excitement.
As he looks out from the stage, the theater lights blind him. They extend before him, beds of gleaming golden crocuses. Their brilliance makes it impossible for him to see the audience though he knows the theater is filled to capacity. His wife and two former female lovers are there, as well as a group of young men for whom he has procured tickets. He has asked each of these men to wear a green carnation as a sort of a joke, because he enjoys meaningless signs and symbols. In the buttonhole of his own jacket, he sports a carnation painted a vibrant shade of verdigris.
The cheers of the audience turn to hoots. He is loved. He stretches out a hand, sheathed in a mauve glove, cigarette dangling from his fingertips. Bits of ash flake onto the stage. He thanks the actors: “I congratulate you on the great success of your performance which persuades me that you think almost as highly of the play as I do myself.”
Lady Windermere’s Fan—unlike Wilde’s other notable works up to that point The Portrait of Dorian Gray and Salome—will win for Wilde acceptance. There is criticism, mostly of his after-performance speech. Henry James, never a fan, gripes in a letter: “…the unspeakable one had responded to curtain calls by appearing with a metallic blue carnation in his buttonhole and cigarette in his fingers.” Later, others will remember and whisper about all the boy-men sporting blue-green carnations: it is meant to signify, they will claim, a certain, peculiar kind of solidarity.
***
In the early 1900s, the American poet Ellen Wheeler Wilcox wrote in National Magazine about the women she had met on a trip to Ceylon. She notes, admiringly, that these upper-class Ceylonese women are articulate and urbane. She focuses on one in particular: “Mrs. de Mel was educated in the English mission school, and speaks not only her own Singhalese tongue…but English and French fluently….Mother of six children, this Singhalese lady takes charge of their education, and looks after their clothing, health, and pleasures while she dispenses large hospitalities...”
My mother, born upper-class, in Colombo, some forty years after Mrs. de Mel, was very much a product of this culture of lady-making. She could run a kitchen, sew, dress well, speak well. She acquiesced to an arranged marriage. She knew how to tend to the well-being of another person. Even Wilcox’s description of Mrs. de Mel—“Her complexion is soft brown, something like the shade of unburnt coffee, and her long straight hair, clear cut features, and dazzling teeth …made her a target for admiring glances.”—could just as easily describe my mother.
She loved more than anything else to cook. She made meals for us seven days a week. On at least one Sunday a month, she concocted the elaborate lunches served during her childhood in Sri Lanka: a meat curry, a vegetable curry, dhal, watercress mallung, fried eggplant, papadum, and sometimes, if we were lucky, fish cutlets. She also on the weekends baked pastries and cakes covered in homemade butter icing and powdered sugar. The elaborate meals, typical to an upper-class family in Sri Lanka, were recreated in detail in our middle-class household in America.
I have a memory of watching her in the kitchen. She spreads her hand out. A band-aid encircles one finger. The pink mesh has turned to rust and the band-aid has become stiff and encrusted. The skin on the top of her hand has become severely dry, split, and cracked. Enough blood has congealed that the entire wound has stopped bleeding, but it hurts my mother to move the finger or to try to grasp the handle of the knife. It also hurts my mother to wash her hands. As soon as she does the water dissolves the crusted blood, and she starts bleeding again.
***
The first mention of Lady Windermere’s syndrome appears in 1992 in the journal Chest. The authors of the article noticed the cluster of symptoms in a group of six, elderly female patients who each appeared to be trying to suppress their cough. These women must have also appeared exceptionally prim because the authors came to believe the cough suppression might be linked to gender-specific behavior: “The medical apothegm ‘Ladies don’t spit,’ embodies the idea that female patients are more fastidious and hence more likely to regard expectoration as socially unacceptable behavior.” According to the authors, they named the syndrome after Lady Windermere because of the character’s refusal to shake hands with Lord Darlington in a key scene in the play. (A scene I’ve not been able to find in the play itself.)
***
During the last few months of her life, when my mother went to sleep, her breathing became so shallow carbon dioxide built to dangerous levels in her blood and she became hypoxic. She awoke disoriented, suffered memory loss. Sometimes, when the oxygen deprivation reached its worst levels, she hallucinated. She believed once that her father and mother, long deceased, stood next to her bed talking to her. She confided in my father that she continued to hold on to the possibility even when she understood it was a hallucination that her mother and father had, in fact, come to visit her. None of us recognized the degree to which the memory loss was disrupting her daily life until we went through my parents’ finances after her death. We realized that bills had gone months unpaid. In some cases, we were weeks away from dealing with a collections agency.
My mother relied on a CPAP machine to help oxygenate her blood as she slept. She used a portable unit placed next to her bed every evening. Eventually, the portable CPAP became useless. It wasn’t powerful enough to counteract the shallowness of her breathing. She had to go the hospital more and more frequently. Her greatest fear at that time was that she might be placed on a ventilator, unable to breath on her own. Finally, a few days before she died the doctors told her she could remain on the CPAP for good or be disconnected and die painlessly from the build up of carbon dioxide in her blood. She chose to be taken off. She told us that she couldn’t stand the sound of the CPAP, an omnipresent roaring in her ears that felt to her like being trapped in a wind tunnel. My family and I worried that perhaps she chose to die because she didn’t want to inconvenience us by lingering. My mother was like that, always worried about how we were being inconvenienced.
When the nurse removed the CPAP, my mother called her family in Sri Lanka to speak with them. By that time my mother was short of breath and her voice had reduced to a faint growl. Days later, when we called my aunt to tell her my mother had passed, she screamed. My aunt and one of my mother’s cousins insist my mother had told them she was going to get better. Maybe, my aunt had misunderstood. Maybe, she couldn’t understand my mother, and allowed herself to believe my mother was saying something else, or maybe in the end, my mother did lie. Maybe my mother wanted to spare her family a few extra days of sorrow.
***
My earliest memories are of my mother in hospital. I spent my childhood fearing she was going to die and leave me with a father who felt distant and too often dissatisfied at the world and with me. Eventually, without an explanation, without an understanding of what was wrong, that fear curdled into anger at my mother for being endlessly ill.
I’m obsessed with female toughness. This theme spills into my fiction and into my personal choices. This is partly the result of living with my mother’s illness. It also comes from being the smallest, weakest child at my school and in my neighborhood. I was timid, easily spooked, and lacking any physical grace or athletic ability.
One day, I was playing with my friends when one of them, Catherine Dunstan, demanded I climb a tree. Even if I had wanted to, I wouldn’t have been physically capable of it. I tried to weasel out. When I did, Catherine turned to me and spat: “Why aren’t you strong like your mom?”
Catherine’s insult shocked me at the time because I didn’t know what she was talking about. My mother wasn’t physically strong. Or at least that’s how I recall it.
But, when I called up my sister recently to ask her, she told me that she did not realize my mother was ill when we were children—only later in the early nineties when we were in college. When I told her what Catherine had said to me, she replied, “Sure that makes sense. I think everyone thought of her as active and healthy.” She reminded me that my mother had been in her youth athletic and she’d taken up tennis in her late thirties and forties. She played doubles tennis on a neighborhood court. She loved to garden—a labor-intensive endeavor that included shoveling and lifting. My mother also designed a tree house—a four-wall cabin, eight feet by ten feet, on stilts. My parents bought the lumber from a hardware store and did all the carpentry and construction by hand. The tree house lasted over fifteen years before being swept away in a flood.
I want to know how we could have had such divergent impressions of my mother’s illness. Had I been so consumed by my fear that I misperceived my mother entirely? Because I was small and vulnerable, had I seen that in her as well? I’m sure of my memory of the symptoms, and both my sisters remember them too. But, I’m the one that pieced them together to cast my mother as perpetually ailing.
***
In his editorial Did Lady Windermere Have Cystic Fybrosis? Bruce K. Rubin, MD notes the connection between the syndrome and patients with cystic fibrosis. The inability to produce an effective cough results, most likely, from a gene mutation rather than an inherent desire to remain lady-like. He goes on to gently rebuke the medical researchers. “It has become a cottage industry to diagnose ‘modern’ diseases in historical figures who had unusual deaths, chronic illness, or physiognomy consistent with specific conditions. On the basis of extremely postmortem evaluations, Abraham Lincoln has been thought to have had Marfan syndrome, and…the Polish-French composer, Frederick Chopin, may have had CF. Although, the diagnosis of chronic illness in the long dead is an interesting blend of medicine and history, diagnosing disease in fictional characters falls under the realm of creative imagination.”
The naming of a disease has serious implications for its diagnosis and treatment. The name Lady Windermere’s syndrome appears to dismiss the truly terrible symptoms, ignores the syndrome’s true form—one that it is debilitating, one that kills. It also genders the disease and in doing so genders its perception—it not only affects women but also women of a certain class, which seems entirely improbable. Rubin notes that despite the name and the social reproof implied by it, men should be tested and treated for Lady Windermere’s syndrome. Precisely because of the name, it is possibly harder for a doctor to imagine a man suffering from it.
***
Dr. Peter Kussin, the pulmonologist who treated my mother in the last months of her life visited us in the hospital room. My mother had slipped into unconsciousness late evening. My father, a doctor, had gone back to the hotel room to take a shower. I suspected he was tired of nurses and doctors and stricken by the realization, despite all his years of training and medical practice, there was nothing he could do.
Dr. Kussin sat across from my sister and me, next to my mother’s bed, and explained to us that he and his colleagues believed my mother suffered from Lady Windermere’s Syndrome. Even though she had been treated at Duke for two decades, this was the first time that a doctor had offered us an explanation. She most likely had suffered a serious lung infection, maybe tuberculosis, when she was younger. Her lungs had become at that point badly scarred. It was possible, though there was no reason to test her for it now, that she had a gene mutation similar to the one for cystic fibrosis.
Kussin was a large man, balding and ruddy, and acted surprisingly engaged. The other specialists who had come hadn’t stayed more then a few minutes and had assured us, hurriedly, as if terrified of our grief, that there was a chance my mother might recover. There wasn’t. A group of residents had made rounds earlier and one of them began crying when she saw my mother, which had annoyed me. Dr. Kussin remained calm and friendly, and even though he was on rounds, he sat for a long time with us.
He and I swapped Brooklyn stories for fifteen minutes. Then, he told us a little about the syndrome’s history. He mentioned, in America, it was most common in the South. He described his Lady Windermere patients as tall, willowy Southern women with well-coifed hair. “We had a joke in the office that it was the big-hair disease.” He smiled ruefully.
Midway through the conversation, after we’d asked a number of questions, Dr. Kussin asked if my mother had been exposed to clay ovens as a child. He was testing a theory.
My mother had learned to cook by following the servants around the kitchen and watching them. She spoke of her time in the kitchens with fondness, and it was clear that she spent as much of her day as possible watching them. I also remembered that in her childhood home, there existed a traditional kitchen with counters, a fridge, and a stove (that was never used because of the cost of gas)and another back room containing three clay ovens. The walls were black, thick and crusted with soot. It looked, not like a room, but the inside of a cave.
Kussin nodded when I mentioned that. He had been working in India with villagers whose lungs were scarred from working over clay ovens. After a lifetime of not knowing what was wrong with my mother, this moment felt a victory—being able to piece Kussin’s question with an actual memory. Only later did I realize there was no way to prove Kussin’s thesis. He’d come to offer his interest in my mother, because that interest, in the moment, was the only, real kindness there was.
As Kussin spoke to us that morning, I saw my mother’s eyes flicker; her mouth twitched as if she were trying to speak to him. I had thought until that moment that my mother had lost all consciousness but it looked to me as if my mother was trapped in a state between sleep and wanting to wake—an impression that horrified me. I have always felt terror in those paralyzing moments when I find myself caught between sleep and wakefulness. I mentioned what I saw to my father. He nodded. He said she may have been responding to the sound of Kussin’s voice. She had hoped, when he agreed to take her case, that he might be able to cure her—even though there’s no real cure for Lady Windermere’s syndrome.
The night before, she had sat up watching television. Her eyelids started to droop but she kept shaking herself awake. “Are you afraid to go to sleep?” my sister asked.
“Yes,” my mother replied. “When I do, I won’t wake up again.”
***
A librarian, Emma Watts, first writes Chest a letter noting that the character Lady Windermere isn’t ill. She’s a young bride with a small child—vibrant and not even, as Watts notes, particularly prissy. Watts is right. Lady Windermere’s Fan is concerned with subverting and mocking social fastidiousness. Lady Windermere considers running away with the dissolute Lord Darlington because she believes her husband is cheating on her. Lady Windermere allows another woman to ruin her own reputation to preserve the very marriage she had just moments before considered turning her back on. Lady Erlynne, the woman so willing to sacrifice her reputation to protect Lady Windermere, is revealed to be blackmailing Lord Windermere by threatening to expose the truth of his wife’s parentage. She is really Lady Windermere’s mother.
Lady Windermere’s Fan is meant to be a subversive play, up to a point. Wilde, unlike his contemporaries Ibsen and Shaw, is unwilling to explore the social conventions that trap women. His Lady Windermere and Lady Erlynne are meant to tweak the scruples of high society, expose the moral hypocrisy that so angers Wilde.
It’s this same anger that leads Wilde to sue the Marquess of Queensberry for libel. He misjudges his friends and believes the popularity generated by Lady Windermere’s Fan and his later plays will protect him. After his release from prison, Wilde is shunned by the very society that once esteemed him and spends the rest of his life itinerant, nearly friendless, and in poverty. Reading about his last years is painful; to see a man whose life had been a brilliant, bravura performance, in all the best ways, reduced and humiliated is dispiriting. He is, in every account, broken and vulnerable. Even the famous last words—the witticism about the wallpaper—aren’t in actuality his last words (the quip was uttered weeks before his death). At the end of his life, he asked for a Catholic priest in order to convert: “The artistic side of the Church and the fragrance of its teaching would have cured my degeneracies.”
Richard Elleman in his biography of Wilde, contends more than once that Wilde died of complications from syphilis. But there exists no actual diagnosis of syphilis and this is the sort of extremely retrospective postmortem that Dr. Rubin criticizes in his article on Lady Windermere’s syndrome. This claim seems to share same root as the insinuations about the green carnations: our fascination with the image of Wilde as having led a debauched life. We do know a few weeks before his death Wilde had surgery done on a painful abscess in his eardrum, the possible result of a bad fall he took while imprisoned. It is just as likely that a secondary infection from that surgery killed him. But now I’m conjecturing as well. We perceive whatever details allow us to make a palatable narrative of another person’s suffering—that story a talisman against the overwhelming darkness of another’s pain.
***
In my mother’s wedding photographs, she appears dangerously underweight. My father told me recently that a cousin of his asked why he wanted to marry such a thin, frail woman. “You’ll be taking care of her. She won’t be caring for you.” The first indication something was medically wrong, he said, had come when she applied for a visa to immigrate to England. Her lungs were so badly scarred my father and another family friend felt sure that the British immigration service would think she was very ill and turn down her application. The doctors, and my parents, eventually dismissed the scarring as the result of a childhood illness, and the event didn’t come up again until I told my father what Dr. Kussin had said to us. My mother suffered her whole life—severe dry skin, suppressed appetite, shortness of breath, muscle weakness, heart failure and, in her last two decades, terrifying bouts of coughing. Before her diagnosis, we all had our ideas about what was wrong with her. As a teenager, probably after reading a Judy Blume novel, that my mother was anorexic. For all our conjecture, none of us were ever right, and, more importantly, not one of us offered my mother any relief.
After my mother’s death, my father said that my mother’s deepest flaw was that she lacked optimism. She always expected the worst, he mused. It’s true. She always worried and fretted. Sometimes I wonder if her pessimism was actually another symptom—a manifestation of the oxygen deprivation or an extension of the constant pain. We tend to think of illnesses as an add-on to a person—a tumor, an exposure to a viral infection. In my mother’s case, so much of who she was and what she could accomplish stemmed from and came funneled through her life-long struggle. It’s impossible to separate the two.
***
My mother was, technically, healthy when the nurse removed the CPAP. The machine had brought the level of oxygen in her blood to nearly normal levels. She was lucid and, even if she didn’t feel any physical pain, knew what was happening to her. She was very afraid.
My mother, as she drifted to sleep, began to utter random sentences. She spoke mostly nonsense. At one point, she signaled to me to come near. She put her fingers on my arm. Her touch felt gritty and course against my skin. I noticed that her lips had started to take on a bluish tint, a sign of oxygen deprivation. “Tell my story,” she said to me. “But start with the end.”
“Why the end?” my sister whispered, her breath catching. I knew, with a sorrow that nearly blinded me, what my sister was thinking. My mother wanted me to start with her choice to die.
“Because in the end,” my mother replied, matter-of-fact. If she was providing the most natural, obvious answer. “In the end, I survived.”
Hasanthika Sirisena’s work has appeared in the The Kenyon Review, Witness, Bellevue Literary Review, Glimmer Train, Epoch, StoryQuarterly, Narrative, and other magazines. Her debut short story collection, The Other One, won the Juniper Prize for Fiction and was published in March 2016.