Now playing on Otherppl, a conversation with Eva Hagberg Fisher. Her new book, How to Be Loved: A Memoir of Life-Saving Friendship, is available from Houghton Mifflin Harcourt.
Eva’s writing has appeared in the New York Times, Tin House, Wallpaper*, Wired, and Dwell, among other places. She holds degrees in architecture from UC Berkeley and Princeton as well as a PhD in Visual and Narrative Culture from UC Berkeley.
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The whiteboard across the room says that his name is Arman, or Arthur. Maybe it’s even Arnold—my vision is hazy, and I can’t make out the word written in light green marker. He’s the nursing assistant assigned to my room. I dislike him immediately.
I’ve just been wheeled up five floors up to the neurology ward from the intensive care unit, a vertical progression that means I’m getting better. Better enough that I don’t need an ICU nurse presiding over my bed full-time, at least. Better enough that I’m allowed the comfort of the pink, flannel pajama bottoms my husband has retrieved from my drawer at home. I’m still in my hospital gown, but at least I’m warmer now, and covered.
For the next few days, I’ll be poked at and medicated by a series of nurses who all seem to be named Kathy, a different one manifesting every twelve-hour shift. Their nursing assistants will help me stand for long enough to stretch my legs against the threat of blood clots.
I plan to wait out Arman’s 12-hour shift before I ask for anything—he makes me nervous, standing closer to me than necessary while Kathy the First shines a flashlight in my eyes, peers down into my pupils, and asks if I know where I am.
When I was young, I believed in all kinds of God. God in the lakes and trees and rolling farmlands of western Michigan, where I grew up, and in the wilds of all the world; God of the Old Testament, and of the New; God of the Hindus; God of the New Age. I had so much faith that I was able to do dumb things quite fearlessly (as adolescents must, I believe, or doom the species to stasis).
Gina Frangello is the author of the novel My Sister’s Continent and the story collection Slut Lullabies. She is one of the most bold, fearless, unhindered writers I’ve ever read. After reading the manuscript of My Sister’s Continent, one editor was quoted as having said, “I couldn’t explain this book to a marketing rep without blushing or breaking down.” Here are six sex questions for the inimitable and amazing Gina Frangello.
Being on hospice doesn’t mean I’ll be dying tomorrow, although I’ve hoped it would be that easy. If only I could take my last breath while sleeping—one last inhale, roll over and be gone, leaving only a deep stillness in my room. But, despite the suffering, I want more time to prepare my children on how to keep up the house, the yard, to nurture the staghorn ferns and entice the glossy white dendrobiums hanging from the patio trellis into blooming. Everything I’ve ever possessed seems to be closing in on me. I’ll need to loosen my grip on all of the precious things I’ve garnered during my seventy-one years. My garden beckons outside the bedroom window. The dogs bark and the cat hisses, but the mute plants can only signal for attention by denying their plumes. Surely, my children will remember me stumbling out with the hose every morning, but will they care about the tender fronds and buds unfolding to reveal the tiny miracles inside of their world?
I think that with very important things we do not overcome our obstacles. We look at them fixedly for as long as is necessary until, if they are due to the powers of allusion, they disappear. – Simone Weil, from her letters
In the opening sequence of the latest X-Men movie, a young boy, Erik, is asked to move a coin across a table before the count of three or his mother will be shot. It is Poland, 1944, and Erik’s mother, emaciated and terrified and brutalized, tries to calm her son as he attempts to save her life. The ruthless Sebastian Shaw (Kevin Bacon speaking in German!) begins the countdown. Erik concentrates, his face contorted, fingers trembling, watching the gun, then the unmoving coin, glancing over his shoulder at his mother, who tries in vain to reassure him (“everything is okay,” she repeats, mother to the last, knowing that they’ll both lose this battle). Erik tries desperately to use an extraordinary and unexplainable gift that the Nazis discovered during the liquidation of the Jewish ghetto, when he bent an iron gate as his parents were being dragged away. He cannot do it; the stress is too great. He fails the test and Shaw shoots his mother in the heart.
Prologue
Viruses are embedded into the very fabric of all life.
— Luis P. Villarreal, “The Living and Dead Chemical Called a Virus,” 2005
From my hotel window I look over the deep glacial lake to the foothills and the Alps beyond. Twilight vanishes the hills into the mountains; then all is lost to the dark.
After breakfast, I wander the cobbled village streets. The frost is out of the ground, and huge bushes of rosemary bask fragrantly in the sun. I take a trail that meanders up the steep, wild hills past flocks of sheep. High on an outcrop, I lunch on bread and cheese. Late in the afternoon along the shore, I find ancient pieces of pottery, their edges smoothed by waves and time. I hear that a virulent flu is sweeping this small town.
A few days pass and then comes a delirious night. My dreams are disturbed by the comings and goings of ferries. Passengers call into the dark, startling me awake. Each time I fall back into sleep, the lake’s watery sound pulls at me. Something is wrong with my body. Nothing feels right.
In the morning I am weak and can’t think. Some of my muscles don’t work. Time becomes strange. I get lost; the streets go in too many directions. The days drift past in confusion. I pack my suitcase, but for some reason it’s impossible to lift. It seems to be stuck to the floor. Somehow I get to the airport. Seated next to me on the transatlantic flight is a sick surgeon; he sneezes and coughs continually. My rare, much-needed vacation has not gone as planned. I’ll be okay; I just want to get home.
After a flight connection in Boston, I land at my small New England airport near midnight. In the parking lot, as I bend over to dig my car out of the snow, the shovel turns into a crutch that I use to push myself upright. I don’t know how I get home. Arising the next morning, I immediately faint to the floor. Ten days of fever with a pounding headache. Emergency room visits. Lab tests. I am sicker than I have ever been. Childhood pneumonia, college mononucleosis — those were nothing compared to this.
A few weeks later, resting on the couch, I spiral into a deep darkness, falling farther and farther away until I am impossibly distant. I cannot come back up; I cannot reach my body. Distant sound of an ambulance siren. Distant sound of doctors talking. My eyelids heavy as boulders. I try to open them to a slit, just for a few seconds, but they close against my will. All I can do is breathe.
The doctors will know how to fix me. They will stop this. I keep breathing. What if my breath stops? I need to sleep, but I am afraid to sleep. I try to watch over myself; if I go to sleep, I might never wake up again.
1. Field Violets
at my feet when did you get here? snail— Kobayashi Issa (1763 – 1828)
In early spring, a friend went for a walk in the woods and, glancing down at the path, saw a snail. Picking it up, she held it gingerly in the palm of her hand and carried it back toward the studio where I was convalescing. She noticed some field violets on the edge of the lawn. Finding a trowel, she dug a few up, then planted them in a terra-cotta pot and placed the snail beneath their leaves. She brought the pot into the studio and put it by my bedside.
“I found a snail in the woods. I brought it back and it’s right here beneath the violets.”
“You did? Why did you bring it in?”
“I don’t know. I thought you might enjoy it.”
“Is it alive?”
She picked up the brown acorn-sized shell and looked at it. “I think it is.”
Why, I wondered, would I enjoy a snail? What on earth would I do with it? I couldn’t get out of bed to return it to the woods. It was not of much interest, and if it was alive, the responsibility — especially for a snail, something so uncalled for — was overwhelming.
My friend hugged me, said good-bye, and drove off.
At age thirty-four, on a brief trip to Europe, I was felled by a mysterious viral or bacterial pathogen, resulting in severe neurological symptoms. I had thought I was indestructible. But I wasn’t. If anything did go wrong, I figured modern medicine would fix me. But it didn’t. Medical specialists at several major clinics couldn’t diagnose the infectious culprit. I was in and out of the hospital for months, and the complications were life threatening. An experimental drug that became available stabilized my condition, though it would be several grueling years to a partial recovery and a return to work. My doctors said the illness was behind me, and I wanted to believe them. I was ecstatic to have most of my life back.
But out of the blue came a series of insidious relapses, and once again, I was bedridden. Further, more sophisticated testing showed that the mitochondria in my cells no longer functioned correctly and there was damage to my autonomic nervous system; all functions not consciously directed, including heart rate, blood pressure, and digestion, had gone haywire. The drug that had previously helped now caused dangerous side effects; it would soon be removed from the market.
When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how. The search is exhaustive; the answers, elusive. Sometimes my mind went blank and listless; at other times it was flooded with storms of thought, unspeakable sadness, and intolerable loss.
Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties. It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past. Time unused and only endured still vanishes, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.
I had been moved to a studio apartment where I could receive the care I needed. My own farmhouse, some fifty miles away, was closed up. I did not know if or when I’d ever make it home again. For now, my only way back was to close my eyes and remember. I could see the early spring there, the purple field violets — like those at my bedside — running rampant through the yard. And the fragrant small pink violets that I had planted in the little woodland garden to the north of my house — they, too, would be in bloom. Though not usually hardy this far north, somehow they survived. In my mind I could smell their sweetness.
Before my illness, my dog, Brandy, and I had often wandered the acres of forest that stretched beyond the house to a hidden, mountain-fed brook. The brook’s song of weather and season followed us as we crisscrossed its channel over partially submerged boulders. On the trail home, in the boggiest of spots, perched on tiny islands of root and moss, I found diminutive wild white violets, their throats faintly striped with purple.
These field violets in the pot at my bedside were fresh and full of life, unlike the usual cut flowers brought by other friends. Those lasted just a few days, leaving murky, odoriferous vase water. In my twenties I had earned my living as a gardener, so I was glad to have this bit of garden right by my bed. I could even water the violets with my drinking glass.
But what about this snail? What would I do with it? As tiny as it was, it had been going about its day when it was picked up. What right did my friend and I have to disrupt its life? Though I couldn’t imagine what kind of life a snail might lead.
I didn’t remember ever having noticed any snails on my countless hikes in the woods. Perhaps, I thought, looking at the nondescript brown creature, it was precisely because they were so inconspicuous. For the rest of the day the snail stayed inside its shell, and I was too worn out from my friend’s visit to give it another thought.
It was inevitable, right? It was our honeymoon. One of us had to get hit by a car. That I was the one, not Karen, does not surprise me at all. I only see this now, looking back. I’m crossing the street. I hardly look. I resemble my father, Ira, who was voted “Most Likely to Get Hit by a Car” in his high school yearbook. And my father, a tall, prominent man, has been hit by cars before, one time a school bus.
I was on my way to buy oranges. I was standing on the curb, day-dreaming (about eating an orange in bed, slice by slice, my new wife happily dozing next to me) when I sort of just stepped onto the street, and KABOOM!
“Oh no,” I screamed.
“Oh no,” as I was launched, unpleasantly, into the pavement.
“Oh no,” as my foot, which until then had enjoyed a comfortable relationship with a leather beach sandal, rolled under the wheel of a tiny red coupe.
Oh no, oh no, oh no: three times, in quick succession, each a bit more panicky than the last.
The tiny red coupe stopped. I was on the pavement, looking up, somewhat embarrassed.
I mean, what kind of guy screams, Oh no like that?
A small crowd assembled. Two women, both stunned and extremely pretty, leaped from the tiny red coupe, and pushed through the crowd.
“Dios mio!” they gasped.
And the really pretty one, the driver I guess, sensed something unique about me-had she heard me scream, Oh no?-because she did not address me next in Catalan, or even Spanish (I mean we were in Barcelona and I’ve been told before, I look Spanish) but instead shrieked in English, “Are you alive?”
Which was very unsettling.
Maybe she meant, “Are you alright?”
My back hurt, and my foot and my head. But death? I couldn’t help but affirm what had seemed obvious until that point. I stood up.
“I’m alive,” I said.
The crowd dispersed. I caught the eye of a fit guy on a ten-speed bicycle; riding away, he looked disappointed. I was alone with the two women. I was alive. When my father was hit by the bus he called it The Uppercut. This was more Punch-Buggy.
“Where’s your foot?” the other one asked.
I noticed she really wasn’t pretty at all.
“Does this hurt?” the driver said, leaning down towards me, gently, touching my naked foot.
I wanted to say, “Yes, it hurts .”
I wanted to say this just to please her.
But then she said, “Let’s go to the hospital,” and I imagined my life soaring away into a foreign oblivion. It was only the second day of my honeymoon and I had not oriented myself to the city. Don’t ask me why, but here in Barcelona, the most cosmopolitan of Spanish cities, a city I had lived in in my early-twenties, I imagined a sort of military atmosphere, a large, foursquare room, uniformly uncomfortable beds, patients dying. We were staying at a friend’s flat on Sepulveda, but I didn’t know the street name at the time, and I definitely didn’t know the number. What if I had to stay at the foreign hospital? What about my new wife, who at that moment was sitting on a plaza nearby filming a flamenco street performance? She’d wonder where I was. She’d look for me. Maybe she’d find my beach sandal and freak. Maybe she’d find nothing and freak. Possibly, we’d meet up, days later.
“No,” I said.
I could’ve asked the far less pretty one to find Karen. I could’ve waited with the driver. We could’ve talked about ourselves. I could’ve voyaged to the hospital with three woman, two strangers and a wife, each one asking in her own way, “Does that hurt?” Really, though, I just wanted to see my wife.
And that’s what I said. “I want to see my wife.”
The ugly one lit a cigarette.
“Are you so sure?” she said.
“I’m sure,” I said.
Now here’s what bothers me. Next, instead of making my way to Karen, I limped across the street and staggered into the fruit market. I browsed the fruit bins, feeling immensely sorry for myself. I was, actually, dying, as I learned a few days later, and I guess I was already feeling a little spooky. I thought of our wedding night, how I vomited in the bushes, and then we lounged, as newlyweds, in a broken hammock. I wanted to get better, but I also wanted to get worse, to keep Karen forever leaning over me, rubbing my shoulders, and whispering, “Is that better?”
I bought my oranges, re-crossed the street, and made my way back to the plaza I’d left maybe ten minutes earlier. My sleeves were shredded, my remaining sandal no longer fit right. I turned up some alley, passed a gelato shop, which smelled like coconut, limped down a narrow, secret street, under an arch leading onto a plaza, and there was Karen, the loveliest women I’d ever seen, peering through our digital camera, and I corrected my limp although it hurt.
What would I tell her?
Perhaps I’d tell her I bought the most spectacular oranges. I’d already tasted one and it was delicious. She saw me and smiled, her adorable Karen-smile, so giving, and I felt a pain in my heart. Perhaps I would tell her nothing. At last, when my thin shadow spread across the pavement where she was sitting, she looked up, frowned a bit, and said, “What took you so long?”
“I was hit by a car.”
“Shut up.”
I pointed to my one foot, deserted, trampled. She burst into tears.
“What happened?”
We sat, on the plaza, clutching each other. Karen was afraid to let me go and I was afraid to let her go. What other scary thing might happen?
“Do you want to go to the hospital?” Karen asked.
Have you read Frank O’Hara’s poem about Lana Turner? “Lana Turner has collapsed!” My favorite lines in all of American poetry:
“I have been to lots of parties/ and acted perfectly disgraceful/ but I never actually collapsed.”
What kind of person gets hit by a car on their honeymoon? Sitting there, I remember thinking: this whole incident seems to prove on some level that I am incompetent. I looked at my new wife, at the slender profile of her face, the tears marking her cheeks, her lovely pecas, which is Spanish for “freckles.”
I remember little of the days after I was hit by the tiny red coupe.
I remember the streets we walked from the metro to the beach. I remember reading lunch menus on the chalkboards. I remember a guy on the beach balancing doughnuts on a plank on his head. One evening, Karen dragged me from the metro station on her back to the flat on Sepulveda. I’m dying, I remember feeling.
My courage, or stupidity, still surprises me. I refused to give it much thought. I had already done enough to ruin our honeymoon.
One morning I looked in the mirror and noticed my ribs pulsating around my abdomen. I was thirsty, unimaginably thirsty, as if a vacuum were sucking the water out of my body. Whatever was happening was undeniable.
So I asked my new wife to call the doctor. One hour later, nearly dead, I was rushed to the ER, where I was diagnosed with type-1 diabetes. They hooked me up to a tube of insulin the size of a bomb. It was called “La bomba.” At night, after visiting hours had ended, Karen would go home to the flat on Sepulveda alone. I can see her now, standing on the balcony, surrounded by a prolific breed of plants, looking out to the building across the courtyard, looking up to the ridiculous sky.
I stayed in the hospital for six days.
The fact that all this happened during my honeymoon depressed me for months.
To get hit by a car on your honeymoon is not good. To enter the hospital, nearly dead, on your honeymoon, is worse. I had given a vow a month before, to have Karen as my wife, to live together in marriage, to love her, to comfort her, to honor her and keep her, in sickness and health, in sorrow and joy, and to be faithful to her, as long as we both shall live. With this vow comes an unspoken promise, one that a young guy might feel obliged to ignore: to stay alive. It’s important not to die. Beyond the grandiose gestures of wedding vows, the most human thing a couple can do together is survive.
It’s rare, I imagine, to receive that sort of lesson on a honeymoon. But I did. We did.
“Do you want to go to the hospital?” Karen had asked that night on the plaza.
“Of course not,” I had said.
And so we went off to a little restaurant in El Raval. It was our honeymoon, after all. I remember devouring my monkfish paella. I remember looking at my wife, how she dissected a plate of prawns in a silence she broke only to ask for more wine. I remember the wine, the tang of cheap rioja, the two bottles we swilled out of sheer joy.
Dad always loved taking the long way to wherever he was going. If there was a way to get to school, church, or the Little League baseball field that involved twisting and turning our way through the backroads of Raleigh until all us kids were turning green and ready to hurl, that was the route Dad preferred to take. Just like in that Robert Frost poem.
When he, Mom, and my two older brothers moved to Raleigh from Gulfport, Mississippi, in the late 60s, one of the first things Dad did was get out his Raleigh roadmap and trace out a route from our house in the newly developing suburbs of North Raleigh to our church downtown that involved a more satisfying amount of winding roads, stomach-churning turns, dizzying hills, and gnarled asphalt.
This was all fine with me, for the most part. As a boy I was never in a hurry to do anything that involved going somewhere. But I did have to go to school. My 8th-grade year I transferred to a school downtown after a few years of tedious bullying at my local middle school, and since Dad worked downtown at the power company, he took me to school every morning. Our lengthy commute into town gave me more time to enjoy the idiotic antics of Gary and Nola on the Morning Zoo on 94Z every morning as I bit my nails and stripped cuticles off my fingers in bloody anticipation of another horrific day as a 13-year-old.
I was bequeathed the “take the long way that’s kind of tedious to other people” impulse by Dad, and it used to make my high school friends nuts because I was the only one with a car, so in order for them to hitch a ride they always had to go to the bayou and back to get anywhere. (And they’d be forced to listen to all of my awesome musical cassettes while enjoying the view.) But most of the time in my adult life I’ve never been able to indulge it because I’ve always been running late. I was never able to sit back, relax, and calmly make my way through the unnecessarily labyrinthine journeys Raleigh had to offer—or rather, I could, but I had to do it very quickly.
But I could always rely on Dad to take the scenic route whenever we would go somewhere on my visits. The journey, to him, was at least as important as the destination.
Even in the latter stages of Dad’s Alzheimers, when we had to take his driver’s license away from him, his meandering continued. He couldn’t sit still. He would constantly be wandering around looking at things, trying to sneak out of the house, and moving toward some unspecified and probably nonexistent target. The further he wandered into the fuzzy headspace of his disease, the more he seemed to want to get up and go places. Of course, this behavior stemmed directly from the Alzheimers, but it was nice to think more fantastically—that Dad was rapidly aging backward, say, and that he wasn’t a sick 79-year-old man but rather a cheeky 6-year-old full of wanderlust, curiosity, and mischief, stalking frogs, leaving dog turds on doorsteps, and choosing his own adventure.
When our family gathered at our time-share condo at North Carolina’s Atlantic Beach last August for what would be our last beach trip with Dad, he was restless and fidgety. We had to keep a constant eye on him to make sure he wasn’t slipping off to do some exploring.
“Crap! Where’s Dad?!” I said after dinner one night, realizing that he was no longer standing in front of the television with his dog Lilybit in one hand and the clicker in the other, clicking. He’d quietly wandered off as mom, my sister Laurie, my brother Kevin, and I were talking at the table. Everyone looked around, got up, and started searching. I went out the front door into the hallway and, sure enough, there was Dad trying, unsuccessfully, to turn the doorknob of the condo next door.
I popped my head back into our place and there was mom, on her way out the door to look for him.
“Found him,” I said. Then I turned and walked toward Dad.
“Hey, Dad, what are you up to?”
Dad stopped trying the doorknob and headed toward the staircase leading down to the boardwalk, muttering, “Oh, I’m just going over here.”
“Okay, that’s fine. I think I’ll come with you.”
“Nah, you don’t have to do that,” he said, seeming a little annoyed.
“I’d really like to. Let’s go for a little walk.” I tried not to sound patronizing—when he was in this kind of mood he was easily stirred up.
“Oh,” he said. “Okay.”
I followed him as he shuffled down the hallway, down the stairs, and onto the boardwalk that led out to the beach. There was a pool off to the right and down some steps where kids screeched and splashed and their parents lounged and chatted. Dad was walking pretty slowly, and while I was following him I zoned out as I gazed over at the wet children flailing about the pool. I watched as a little boy pulled a girl’s bathing suit strap and snapped it back against her back. Without missing a beat the girl twirled around and slapped him across the face.
This excited me, obviously, because who doesn’t like to see a child get bitch-slapped by another child? Is there anything more life affirming? I smiled and looked back over at Dad, hoping he had seen it and would give it a thumbs-up. But he was still moving determinedly ahead on the boardwalk, now at a quicker pace, out to the little gazebo area overlooking the pool on one side and the boardwalk trail out to the beach on the other.
At the gazebo he stopped and sat down, so I sat down next to him. We watched people pass by, greeting them with smiles and soft “hello”s as they passed. Dad never seemed to be looking at anything—rather, he was looking past everything into an ethereal realm that perhaps he alone could glimpse.
After a few silent minutes he stood up and started walking—faster now—along the last leg of the boardwalk out to the beach. I got up and followed him, struck by the determined pose he assumed: hunched over with his upper body bowed forward and arms swinging resolutely as he barreled ahead. He moved down the stairs and slowed down briefly as he began slogging through the soft sand near the dunes.
I followed on his heels, trying to keep up without looking like I was acting as his minder. We were heading east toward Fort Macon State Park, and toward the jetty at the corner of both the park and the island. He and mom had walked down to the jetty for years during our beach trips, early in the morning. But he hadn’t been able to make it to the jetty last year or, sad to say, this year. He would tire out when he was about halfway and be encouraged, by mom, to turn around. He’d tried again yesterday again, but . . .
So was the jetty where we were heading now?
“So how’d you like that chocolate cake we had tonight, Dad?” I ventured. Dad always hated chocolate. He loved dessert but hated chocolate. But after dinner tonight when mom started cutting slices, Dad requested one, and, to the shock of everyone at the table, he ate the hell out of it.
“It was pretty good,” he mumbled under his breath, as if he was saying it to himself. His eyes were still looking straight ahead.
“Yeah, you seemed to really like it,” I laughed, finally breaking even with him.
His pace didn’t decrease, and I began to worry that he would tire himself out again and that we would be a mile away with him not able to walk.
“So where are we going, Dad?”
“Just down here,” he said, gesturing ahead with one arm.
“Okay. We probably shouldn’t go too far, though,” I said gently. “I don’t want you to get too tired.”
“Just over there,” he said, pointing ahead again.
Up ahead a few hundred feet I saw the green sign announcing our entrance into the grounds of Fort Macon State Park, the halfway mark on the way to the jetty. I squinted my eyes and gazed beyond it trying to gauge how much farther it would be to the jetty, and while I was lost in those complicated mathematics, Dad slipped off. When I surfaced from my advanced calculus lesson I realized he was no longer beside me. Looking around I saw that he had darted off into the dunes, clomping awkwardly over sprouts of beach grass and sand stumps. Uh-oh.
Recently, Dad had taken to going outside to go to the bathroom. At the house in Raleigh Mom had regularly started finding him out by the trashcans with his pants down taking a whiz. Fearing for the worst, I quickly hopped over to the dunes to see what he was up to.
“Dad, where are you going? I thought we were walking on the beach.”
“You don’t have to follow me,” he said irritably.
“I know, but I just want to make sure you don’t fall.”
He stopped and looked around the area of dunes. Was he looking for a place to pee? I hoped not, because how do you tell your dad not to pee somewhere?
He stepped passed me and started moving back down toward the beach. Following him down, I sighed with relief.
We continued on in the direction of the jetty, passing a few shirtless guys fishing in jean shorts. Up ahead in front of another series of dunes and close to the Fort Macon sign two abandoned beach chairs were perched, their flimsy seats and backs flapping in the wind.
“Oh, these are ours,” he said, pointing them out.
“No, I don’t think they are,” I, the insufferable literalist, responded as Dad sat down in one of them. It occurred to me to say we probably shouldn’t sit in these, they’re someone else’s, but then I thought so what/who cares?, shrugged, and sat down next to him.
We sat and watched the waves roll in together.
“This is nice, isn’t it?” I said.
“Uh-huh,” Dad replied dreamily. “Sure is.” He looked ahead toward the sea stretching south toward the Bahamas and onward to oblivion. I followed his gaze, my mind wandering again into his headspace, wondering what he was thinking about, where he wanted to go, and if I’d have to be stronger in urging him to start moving back to the condo. Then I got lost in another thicket of time and distance measurements, wondering how long it would take to jet ski to Grand Bahama island and would there be anywhere on the way to stop for snacks…
Dad stood up, walked over to the Fort Macon State Park sign, and then stopped. I got up and walked over to him. He looked at the sign and out to the sea.
“I think we can turn around now,” he said. And with that, he touched the sign and turned to start heading back.
“Oh, okay, are you sure?” I said.
“Yeah.”
We walked back passed the seats we’d just been lounging in, passed the shirtless fisherman tossing their lines out, passed the dunes where we had detoured, all the way back to the soft sand and the boardwalk, up to the gazebo, and over to the faucets where we could wash our feet and legs off. Then we went down the boardwalk stairs onto the grass. I looked over to the pool: there were fewer kids running around now, and, sadly, none of them were slapping each other. Dad made his way up the stairs to our second-floor condo. I followed him up and we went back inside.
A few hours later we were playing cards at the dinner table while Dad sat on the couch with the clicker, clicking. At one point I looked over to the couch and saw that Dad was gone again.
“Crap, where’s Dad?” I said. I started to get up to go out to the hallway and check that he wasn’t trying to open anyone’s door.
“There he is,” Laurie said, pointing out to the balcony overlooking the beach.
There he sat in one of the plastic chairs on our beachfront balcony, a little boy with a television clicker in his hand and his dog on his lap. Staring at the sea.
Among the long list of indignities one must suffer with the increase of age—hair loss, mystery aches, the inherent uncoolness of having your twenties in your rearview mirror—is the particularly troubling discovery that you just aren’t what you once were. You just aren’t—and nothing embodies this loss quite so explicitly as one’s inability to recover from that which would have been a mere blip on the day’s radar twenty years ago. The hangover that troubled your morning back in college now sends you reeling back to bed for an entire afternoon; the sports injury that caused you to limp off the field for a rest now causes you to limp into the Emergency Room for a quick CAT scan. You aren’t what you once were.
Thirteen years ago, Wajahat Malik and I were both cast in a Seattle production of Tom Stoppard’s Rosencrantz and Guildenstern Are Dead. The show played for two and a half months to sold-out houses and peachy reviews and morale among cast and crew ran high. A number of us became close and cast parties frequently wrapped at 5:00 a.m. Malik (he went by his last name because Americans usually mangled his first) was a natural raconteur and delighted us with tales of growing up in Pakistan’s Mansehra Valley, where he and his friends sometimes listened to Bob Dylan and Supertramp in his Volkswagen bus, occasionally incurring his loving mom’s disapproval. One of his sisters was a physician, the other a banking executive and photos of his family’s home and the surrounding region were stunning.
Malik returned to Pakistan over a decade ago and has resided in Islamabad, the nation’s capital, for the past eleven years. He’s a documentary filmmaker and writer whose travels have taken him throughout Pakistan and large swaths of the globe. We’d fallen out of touch but had reconnected on Facebook in 2008.
When the horrific floods enveloped Pakistan at the end of July and beginning of August, I wrote Malik to see if he and his family were safe. He assured me they were, but said much of the country was ravaged to an almost unspeakable degree. Immediately, he had delved into the relief effort. Last week I interviewed him via email about the work so far, obstacles he and his compatriots face and why, despite everything, he remains hopeful.
Litsa Dremousis: Since the floods ravaged Pakistan, you’ve been on the ground helping with relief efforts. I can’t fathom what the experience has been like.
Wajahat Malik: This flood was the worst in Pakistan’s history and the devastation it caused was immense, beyond anyone’s belief. Literally, the whole of Pakistan drowned in the waters of the Lion River, also called the Indus. In the face of such calamity, the nation woke up and stood up to face the waters. People gradually came out of their slumber and then people from all over the country started rescue and relief efforts and helped the flood victims who had lost almost everything. There were too many hopeful acts of self-sacrifice and philanthropy to mention here. The horrific act that happened was when some ministers and local feudal lords in the Sind province used their clout and illegally broke the embankments to turn the flood waters toward the poor settlements in order to save their own lands and palatial farm houses.
LD: Some of the people you’re helping were incredibly poor before the floods. Do you think they have a chance at any sort of decent future? That is, with some kind of food and shelter and schools?
WM: Of course, it is always the poor and downtrodden who bear the brunt of such awesome calamities. Their lives have changed for the worse and the future looks quite bleak for them as the state of Pakistan cannot cope with the scale of the disaster economically. The flood victims have lost their houses, the crops and cattle stocks have been wiped out. Cultivable land has been either washed away or has silted up. Schools, bridges and roads have been inundated. The whole infrastructure has collapsed and it will take years and billions of dollars to rebuild what has been lost. Two million people have no shelter and are surviving on the hand-outs of the flood relief operations. They will have to be housed and rehabilitated. But the big question is, “How?”
LD: Has it been difficult to remain focused in the midst of so much death, loss and illness? How are you coping?
WM: Of course it is hard to carry on with your life when there is so much death and destruction around you. The images of the suffering millions in the flood waters haunt you all the time. When I sit down to eat at home, I feel guilty somehow and feel depressed.
LD: Have you seen anything you view as a miracle, not in the religious sense, but that it was inexplicably good in the middle of so much horror?
WM: No, I have not seen any miracles with my own eyes, neither have I seen footage of such a thing. But it is a miracle that Pakistan, despite the problems that it is plagued with, is still coping with a disaster of such a huge magnitude.
LD: On the flip side, what’s the cruelest act you’ve seen so far?
WM: Again, it would be those of certain corrupt and tainted politicians of the Sind province who, in order to save their land and palaces that they had acquired by sucking the blood of the masses, drowned the poor to save their riches. There is an enquiry commission that has been formed to investigate these criminal acts.
LD: What would you like those of us outside Pakistan to know about the floods? From what I’ve read, illness is spreading rapidly. Do you have loved ones who have become sick?
WM: The floods have obliterated the country’s infrastructure in terms of schools, hospitals, bridges and roads. Houses have been swept away, farm lands are destroyed and the farmers who were already living at subsistence level have nothing left. We are talking destruction worth billions of dollars. The poor who have lost everything and are sitting under the open skies and in the camps are drinking contaminated water and getting sick. In different areas, water-borne diseases have been reported to especially affect women and children, who are always the most vulnerable under these circumstances. No, my loved ones are fine and healthy, but the camps and shelters of the flood relief victims are rife with all kinds of diseases.
LD: From the outside, it seems much of Pakistan’s political unrest is the result of widespread poverty. Yet you seem to remain hopeful. How and why do you maintain hope?
WM: The Western media keeps harping on about poverty spawning the political unrest and turmoil in Pakistan. It is simply not true. It is the policies of America and its cronies that common people of Pakistan despise. And it is across the board. From the poor rickshaw driver to a person like me who has studied in America and has seen and read the world. We see eye to eye when it comes to the hyprocrisies of America and its allies. No amount of U.S. aid pumping billions to raise the standard of living of poor is going to help build the image of America in Pakistan. I remain hopeful because I know the people of Pakistan are not extremists or terrorists. On the contrary, we are one of the most hospitable people in the world. I am not being overly nationalistic–I’m saying it from my experience as a travel documentary filmmaker. I have traveled the length and breadth of this country and know its pulse quite well. We have been used as a buffer state to further the interests of the U.S. and its allies in this region of immense strategic value.
LD: Specifically, what have you been doing with the relief efforts? I know there’s so much to do–how do you prioritize what needs to be done first?
WM: I have been focusing on some Alpine villages in the Upper Chitral region in the Hindukush Mountains that were wiped out by flash floods. Luckily, there was no loss of life, but the already poor people lost everything. I have been collecting funds and sending food supplies to these villages because they are so far away up in the mountains that they were out of the reach of media and hardly anyone knew of their existence. Well, right now, food, shelter and clean drinking water are on the number one priority list as we are still going through the relief phase. But once the relief phase is over, we will go into rehabilitation and that means a lot of hard work and money. These people will need a lot of money to rebuild their houses and the government will need a lot of money to rebuild the infrastructure.
LD: Are you working with a relief agency or have you and your colleagues started your own group?
WM: I am working with a few dedicated friends and we are collecting funds from all over and sending the money to a friend in Chitral Town who is taking care of all the buying and distribution in Chitral Valley. This friend happens to be the Prince of the ex-royal family of the Chitral region, so it is easy for him to identify the needs of local people and buy and distribute food items locally.
LD: What can those of us outside Pakistan do to help?
WM: You can help by identifying people and organizations who are truly making a difference in Pakistan in terms of providing relief to the flood victims. And then donate money and share ingenious ideas for relief and rehabilitation and keep the issue alive in the minds of your compatriots and media, so that these people can be taken care of. And not forgotten because of donor fatigue.
LD: What keeps you going?
WM: The goodness of humanity and the everyday will to breathe keep me going. We don’t want to perish in the flood waters of despondency and grief. We, as a nation, are still alive and kicking. We proved that in the aftermath of the earthquake of 2005 and we will prove it again. Here is a poem I wrote recently on a positive note:
Pakistan,
your hair is dripping with the stinking flood waters
your eyes are red with the extremist’s rage
your nose is dripping with the snot of bigotry
and your teeth are yellow with the stains of corruption.
Pakistan,
please wash your face
brush your teeth,
wipe your nose
and straighten your beautiful hair
The sun is shining outside
It’s a new day
When you enter the country of Pain, they confiscate your passport. You leave behind the things and people that used to feel important and familiar, in which you used to believe. Everyone in the new country is a stranger, though it scarcely matters because pain is really a nation of islands, and everyone who lives there lives alone.
In 1995, while my husband and I were visiting my best friend Tom in Barcelona, I became an unintentional and surprise immigrant in the country of pain. It happened overnight, and at first I did not realize I had “moved.” I believed I had a bladder infection. I’d had them before—many, in fact, even having been hospitalized for one as a child. Sometimes when I got one, I could not close my legs for the burning; I could not stop pacing the room; I urinated blood. But the agony was always temporary. You take your antibiotics, you take your pills that make your pee turn orange, you feel a little crazy for a couple of days and then it is done.
Except this time, it was not.
I tried to make the most out of the remainder of my trip—which then extended into London—but it was difficult. I was impatient for my stay on the island of pain to end. Surely once I got home to Chicago and could see my own doctor, I would get on the “right” drugs and I’d be fine in twenty-four hours. So we returned home, and my doctor, who knew I was prone to these infections, prescribed a stronger antibiotic over the telephone without making me come into the office. I began taking it gratefully.
I got worse.
What had been distracting and bothersome became blinding, all-consuming. My burning no longer happened only during or right after urination but was happening twenty-four hours a day. Eating seemed to make it worse. It grew difficult to function. I was exhausted from the pain, not sleeping, and had started peeing maybe 20 times a day at least. My bladder felt full constantly, as though with battery acid. The inflammation was so extreme I could feel it right through my skin, radiating heat and distended so that my lower stomach felt unnaturally tight and hot. Nothing alleviated it. I showed up at my doctor’s office and he ran a urine culture saying maybe the infection had spread to my kidneys. But this had not happened.
There WAS no infection. My urine was clean.
I went to my mother’s ostiopath. He gave me herbal supplements but they didn’t help. Like many inhabitants of Pain, I became desperate, without the usual sense of decorum and subtlety that people on the Mainland possess. I called my ostiopath too often and complained too stridently. I began to worry that maybe I was dying. I sounded, in short, like a crazy hypochondriac, since crazy hypochondriacs are sometimes indiscernible from people with real ailments the medical establishment does not understand. In truth, I could not be sure myself that I was not going Crazy, which is its own island adjacent to Pain. Maybe it was all in my head. It began to seem possible that one moment, a woman could be in Barcelona lying on topless beaches, seeing a Sheryl Crowe concert, smoking lots of hash with Spanish and Dutch friends, visiting Gaudi parks and having those delicious, vacation-specific afternoon long sex sessions with one’s husband . . . and that the next day she could be raving mad, driven to distraction and a mounting dread of life by physical agony that might not even be Real.
What was real? When you are in pain, it’s hard to tell. It’s in your head, they may tell you, and how can you prove it isn’t? Come in here, you want to say back—Come in here and let’s see how you like it; let’s see how well you cope. But you cannot peel back your skin and let others step in and poke around with their own pain receptors. Your sensations, your respective sanity or madness, are all inaccessible to them.
Maybe you don’t live on an island of Pain so much as become the island. Though, of course, metaphors fail. If you were an island, you would be one nobody wanted to visit. You would be prone to torrential storms that prohibited settlers from approaching your shores.
If you are not an island but a woman, you begin to wonder whether you can honestly go on living this way. You are 27 years old. You could conceivably live another 60 years. The thought of 60 more years, each stretched into its long days, its long hours, feels so unbearable, so overwhelming, that even if you have always been afraid of death you begin to think maybe it would be the “best thing.”Death begins to sound like a dangerous lover from whom you cannot stay away. Death begins to sound like the bad boy you know will be the end of you, but whom will get you out of your parents’ oppressive house, and so you cannot help but run off with him into the night at 17, when no one is looking, when it was not even something you had planned.
I began to take narcotic painkillers. A lot of narcotic painkillers. An addiction to Vicodin probably saved my life.
I alternated at first. Darvoset, large doses of Tylenol 3, which was weaker than the others but gave me a scraping feeling inside my stomach that I liked, that distracted me. Vicodin, or its stronger sister Norco. Percocet when I could get my hands on it. I drank very little alcohol because the fermented nature of it aggravated my bladder further, but I smoked copious amounts of pot.Sometimes I threw some Benadryl in for the hell of it, because though it did nothing to kill my pain, mixing it with the painkillers and weed made me more high so I didn’t care as much, yet didn’t increase my tolerance to the pills. I alternated so that I didn’t become immune to their affects, but sometimes I became immune anyway. Sometimes I took Vicodin after Vicodin at a party, hoping to numb myself out enough that I could smile and make small talk with people—so that I didn’t have to go home and cut myself with the unscrewed razor from my eyeliner sharpener, kept inside a felt cloth for that purpose now, and yet even when my ubiquitous silver pill case was empty the pain was still clawing inside my bladder like an animal determined to scrape its way through my skin and expose itself to the world.
Somewhere amid all this, in early 1996, I received a diagnosis. Interstitial Cystitis: an ulcerative, autoimmune condition of the bladder. It was said to be incurable but not necessarily progressive, and not actually “harmful” (if you don’t count being in blinding pain 24-7 to the point that you have to become a pill junkie “harmful”) to one’s long term health. It is no doubt indicative of my state of mind that this diagnosis actually seemed like good news. I was not insane. There were books about this illness; there were doctors who recognized it, though they did not actually know how to effectively treat it.
It probably goes without saying that, both before and after my diagnosis, sex was not a great deal of fun. And yet, I was determined not to relinquish it. To relinquish sex would be like making a space for Death on the couch. It would be saying goodbye to anything that made me a normal woman, a normal twentysomething person still in the prime of life—to what made me still me. I began to require extreme sensations, extreme scenarios, to transport me far enough away that the sex seemed pleasurable rather than torturous. Probably it makes little sense to say that, while I had always had an interest in kink, those were the years I most required it in vigorous and intense proportions. I just wrote a bit about that, but now I have deleted it; even after a decade, it doesn’t feel like something I can delve into here. Suffice it to say that my husband was, at turns, befuddled, turned on, beleaguered, elated, exhausted. While I was busy popping pills, brewing Chinese herbs, seeing ostiopaths and chiropractors, attending a support group for people with IC (though it depressed me so deeply I never went back after meeting women who had had their bladders removed and lived on psychiatric medication), and becoming an incomprehensible fetishist, he had to continue doing all the “normal” things our lives required, like going to work, paying the mortgage. He worked long hours in finance and his firm was riddled with political unrest and in-house dramas. At times he seemed to me an infantile narcissist, pettily concerned with banalities that could not compare to my Life and Death situation. At other times he seemed a saint to put up with me—to still want to touch me, much less live with me—and I felt so grateful to have him I became as clingy as a child.
There were other things. Other factors. My husband’s issues as an adult child of an alcoholic were beginning to surface in the face of our stressful situation. There was a man with whom I began spending a great deal of time, who it would be fair to say was drawn to all the darker aspects of my personality, my life, while my husband wanted me “back” to the way I’d been before—wanted me healthy, which felt increasingly not even like a pipe dream but a bad joke. Our marriage began to drift.
This was my life. 1997 came; 1998. There was no country of Healthy anymore. Other people lived there, but I could not even visit. The people in Healthy had strange concerns. They cried endlessly over brief love affairs gone wrong, or said “I wish I’d never been born” because they were having a hard time conceiving babies, or talked about their work problems as though these things carried the weight of a mass genocide. A close friend who was unhappily single once told me that I “had no problems” because I was married and my husband made good money. She knew of my illness, but she herself was so ceaselessly healthy that to her it must have seemed abstract, somehow lesser than the difficulties of living alone in an apartment, sleeping alone in a wide bed at night. My friends’ language made no sense to me. Increasingly, I needed a translator to be among them. I was more comfortable among junkies, bipolars, survivors of cancer, who were, at the end of the day, always biding time, waiting for the next blow.
Yet I never really spoke of my illness. I followed a strange diet; I brewed tea with odd herbs; I took a lot of pills. Sometimes I cited the name of my disease as explanation for these habits, but I rarely elaborated. One thing everyone who lives in the country of Pain knows is that if you open up to somebody once about something that is fundamentally unchanging, constant, permanent, your “confidante” will begin to ask you about it frequently expecting some kind of progress report. They’ll say “How are you feeling today?” every time they see you, and if you keep saying, “Like slicing my arms open just to distract myself for one goddamn moment from the burning between my legs” they will not like this answer after hearing it for the 97th time. You will have officially become a buzz kill.Better to just say “Fine.” Better to just say nothing.
My years in the country of Pain are an episode of my life that is both integrated and self-contained.Now, in retrospect, the days, months, years blend together. All said and done, this period of my life lasted for three years and three months: from May 1995 to August 1998. At the time of its finale, I was living in Amsterdam with my husband. In the paradox that is life, my time in Amsterdam was both one of the best times of my life and also one of the most intensely unhealthy. Away from my doctors, my pain level escalated even beyond its usual state. There were days when all I could do was slam Famous Grouse scotch and smoke hash and pound Vicodin until I was incoherent, and still I could feel the edges of the pain snaking around me like a vice, strangling me. And yet, there were days at outdoor cafes and buying fresh vegetables at the markets near our apartment in the Jordaan; there were friends visiting and there was Paris and there was Brussels and there was London and there was Lausanne and there was still, strangely, an intoxicating infusion of sex and a falling-in-love-again with my husband amidst it all. There was a fear of flying that felt crippling and a continued flirtation with death. And then, abruptly, there was a visit to a health food store where I randomly described my symptoms to a Dutch employee of the store and she suggested the herb Pau D’Arco in larger doses than recommended on the bottle, and I tried it because I would try anything, with no hope or optimism that it would actually work when nothing else had, and within two weeks of popping 9-12 Pau D’Arco tablets daily, I was 100% pain free, off every other treatment from my Chinese herbs to my painkillers. I was, incredibly, a normal person again. Shell-shocked, perhaps, but incredibly—for the first time in more than 3 years—pain free.
One thing you tell yourself when you leave the Island of Pain is that you will never be one of those assholes again who sweats the small stuff. That you have learned what is Really Important, and that interpersonal dramas and posturing will no longer plague you—that you will be Grateful and Content with whatever life hands you so long as you remain healthy and pain–free. There are stories we tell ourselves. There are lessons we think we have learned. One is that Pain somehow elevates you from the rest of humanity, makes you more pure, makes you more wise. Maybe part of this is true. And in another, more-than-equal part, it is all bullshit. We all revert to a state of narcissism, which is, perhaps, the human condition. Before you know it, you are fighting with your spouse about the same crap everyone else fights about; before you know it, you are losing sleep over some ridiculous drama at work. It is true what they say about pain: the body cannot retain its memory of that primal state. The intensity is simply too much to cope with on any long term basis. At the end of the day, we all revert to a state of Normalcy if we can. Gratitude on a 24-7 basis holds out only so long.
It has been eleven years now since I left Pain behind and moved back to my native land. I have almost forgotten, now, what it was like to be a foreigner; what it was like to have lost my native tongue. For two years, I took Pau D’Arco daily out of fear, but eventually I stopped, just as I abandoned my Vicodin habit, my marital tumult, my cutting alone in my bathroom, my desire to end my life. Three years after my pain ended, I adopted two children, and five years later I had another, with a body I once believed incapable of even getting through a normal day much less bringing new life into the world intact. These days, I am just a Normal Woman, just a Normal Mom. A decade has worn down the memory of those days as an immigrant in Pain’s land. I tell myself, as all immigrants do, that now I am home for good: that I will never return to that land.
They told me that IC was “incurable” but that it could go into remission. I am, now, 41 years old. I have been in this remission for 11 years. Maybe, at any time, it could end, and there I would be, again. Back then, it was all I could do to get out of bed, to go to graduate school, to feed myself and speak to people and get through my day. Now, I have three children and run my own business and teach at two universities and run an online literary magazine and live with and financially support my elderly parents. If I were blindsided again that way, the consequences would not be the same. My stakes are higher. This time, I might not survive intact.
And so I wait. Or rather, I usually forget I am waiting. I relish the arrogance of forgetfulness, of normalcy. I am here, in my body, my normal body, right now. That other truth seems murky and impossible again. This is the arrogance of the human experience. Even though I have already touched that flame, it seems impossible, somehow, that such a thing could happen to ME.
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