The Value of Illness: Love Again

     I wish I could say my daughter’s almost deadly battle with encephalitis brought quick changes, an appreciation of living in the moment, magically the nearness of death immediately forging Dee and me back together as loving husband and wife. But, in fact, Jennifer’s long rehabilitation brought more paranoia—Jen asking in the early months if she was dead—all of us expecting the next foundation brick to loosen and slip out, bringing another crisis of health for Jen, for any of us. The months rolling along were just chaos with familiar faces: Jen’s continuing recovery, how far she could come back, and the fallout from all the expenses the insurance didn’t cover. The simplest decisions took effort, the movement forward weighted down with the feeling that little mattered, that daily concerns were just battles contested with slight gain and little reward.

     It was much later that Dee and I realized our daughter’s illness did reveal within us strengths and weaknesses and concern and care and love that both of us had forgotten in the other.

    We dated in junior high, high school, the usual breakups, one so bad we went our separate ways to college, and Dee got married, eventually divorcing, and we came back together a few years later, her pregnancy happily bonding us for life.

    The marriage dynamic started like most marriages do: loving, caring, the sense of great adventures to come, and eventually the gift of children, Laurie and Jennifer, and a love for them that brought a welcomed understanding that they were the most important people in the world, suddenly shifting self-interest to a lower rung—at least for a long period of time, until those wizard-hiding curtains began falling for us, revealing a Raymond and Dee neither one of us really knew.

We separated, tried again, separated, me staying away from Dee and the girls for weeks at a time. A year or two of this until Dee finally announced she was tired of ping pong and had rented an apartment. I was an angry man, knowing I hadn’t given her my best but feeling like I had, telling her, fine, go on, get the hell out if that’s what you want.

She went.

The girls stayed.

In her usual quick decision way, oldest daughter Laurie said she was not moving out of the house since her friends were all nearby. Still following our old edict of treating them like an equal member of the family early on, Dee reluctantly swallowed the hurt and allowed Laurie’s decision to become law. Oh, yes, I should have been the one to move out of the house but my anger was hard resolve not to make it any easier for my wife. Jen told Dee privately that she couldn’t move out of the house because someone had to look after me. Nothing said could convince Jen that taking care of her father was not her job. So the positions were fixed.

Dee became the self-imposed outcast, and I saw the pain she attempted to hide every time she came by the house to pick the girls up for shopping or eating out, the pain of simply not being with her daughters on a daily basis. I smothered my pain with anger and alcohol and my sense that everything put together does eventually fall apart.

Routine did settle in, the anger veiled by common courtesy and consideration for the girls, the years rolling along in this city on the river, a time when Laurie viewed me with suspicion, knowing something else might change again and interrupt the delicate balance of her life. Jen was more concerned with everyday issues, school, getting together with friends, even shopping with me at the grocery store and quickly planting herself in front of the cooler with ten pound packs of legs and thighs, throwing her arms wide open and saying, No, Dad, no more chicken, please, no more chicken for a while. Without anything being said about it, Dee and I always attended any function the girls asked us to, showing up as a united front as their parents. Repeated over the next several years, our continuing association and long history together did smooth over those initial reactions when we first separated, the anger that was sometimes directed at each other by deficiencies within ourselves, our lives as a broken family now accommodated somehow.

     So we went through Jennifer’s illness united in battle.

   Starting with fever and terrible headaches, the trip to the emergency room, negative drug test, Jennifer was more and more out of touch, not knowing what was real. The Behavioral Unit, walking around barefooted, talking incoherently to imaginary people, pulling her hair out, coming back suddenly for a moment of clarity.

     Two weeks, no control, and finally a spinal tap.

     Encephalitis.

     An inflammation of the brain due to an infection, a virus.

   After being transferred to the critical care wing, I walked into the room, expecting a calmer Jen, sedated perhaps, but seeing her attempting to sit up, eyes closed, straining violently against the cloth restraints, instinctively fighting what was happening to her, my soul plunged along with my daughter during that long night, Jen descending into a coma, Dee constantly yanking her up to sitting positions, yelling at her, Breath, Jennifer!

    Even those days became routine: carrying on and dealing with the constant monitoring of machines and infections and bodily functions (or lack of them), Dee and I making an effort at small talk, at being interested in matters outside of the hospital, most times the effort of reading a newspaper or book or watching the TV high up on the wall too much to overcome, walking the halls when the need to escape the room was high, peering into other sick rooms when doing so, making eye contact with other vigilant people, the heaviness of waiting etched always in expectant looks, wondering at other stories of illnesses, nodding at the thin young man in his robe wasting away from AIDS, wondering at his thoughts as he stood at the end of the corridor looking out the window, knowing (unlike Jen) just how ill he was, knowing the prognosis was dim, dealing with it the only way any of us could, one moment at a time, one after the other, then again and again, moments rushing together so quickly but strung out so endlessly that the fabric of time finally stretches and slows down.

     After a year of rehabilitation in Texas, the lowest moment of the entire ordeal came a couple of days after Christmas

     It was also the moment, looking into Dee’s eyes, I realized how much I still loved her.

   When Jennifer was between her junior and senior years in high school, she was one of 19 girls chosen to attend the Women in Science Program at Harvard University. Math, science, it all came easily for her, rarely cracking books in high school where she ended up as Salutatorian, the girl as a fearless child with a fistful of earthworms approaching the house and dumping them on the steps for study.

     Jen was home from rehab in Texas until after the first of the New Year. Dee and I were standing in the kitchen when Jen came back from checking the mail. She opened a questionnaire from the Summer Science Program at Harvard, flipping to the information about the girls she was there with in 1989. Her eyes rounded slightly as she read about their accomplishments, those doing scientific research, those working as doctors in major hospitals, and Jen broke down, crying, trying to talk while sobbing.

      I am never going to be a doctor.

     Dee and I encircled her in our arms, the three of us standing there, hugging and trying to comfort each other.

     Jen wailed and said, It is so hard when dreams die.

    My heart literally changed at that moment, the ache unlike anything I have ever felt in that one moment I had dreaded for all of the last year, watching her confronting the realization that her life had spun out of her control, hearing her admit that her dreams were no longer valid, seeing the pain of the last year made visible on her face, looking into Dee’s eyes and seeing her pain also, all driving home the random injustice of serious illness, the dark chaos always circling that will someday claim us all, realizing in that moment we have but one weapon.

     Months later, coming up out of sleep because of the rolling thunder and the constant lightning, alone since Jennifer was spending the night at a friend’s house, I was in the dining area off the kitchen, looking out of the rain-smeared bank of floor-to-ceiling windows when a huge tree came crashing down across the roof, almost slicing the house in half, exploding into the book-lined den with limbs as big around as my waist and legs, and it felt like a tank at full speed had run into the house, the impact of it surely like the first huge shock of a California earthquake, the floor shifting suddenly once, equilibrium suddenly suspect. Waterfalls with leaves and twigs and pieces of wooden roof and tar paper and bits of insulation and black shingles poured down to the parquet floors, splashing walls and running into other rooms torqued out of plumb.

     I called Dee and plugged the coffee pot in, knowing the electricity would be turned off for safety reasons when the firemen arrived. Surprisingly, a miracle to me, the books in the den, some ruined, yes, but I found the tightly shelved ones with only wet spines on the dust jackets.

A reluctant but accommodating Dee welcomed me, providing the last puzzle piece, reshaping our relational landscape.

     Refusing to leave the neighborhood after the destruction, her illness now dictating the notion that she had to be close to the destroyed house, to her actual possessions, Jen stayed for weeks with a good friend across the street, and from the front yard Jen watched the tree being removed, so large it had to be cut in desk-sized segments in order to be lifted by the crane, watching and wondering in her post traumatic stress phase what use the tree could now serve, knowing—with the help of her therapist—and laughing softly after she realized the tree was a symbol of herself: a once strong entity felled, the usefulness of it changed in a moment in another direction, lasting forever.

     Slowly, that morning storm brought Dee and me together again, me lacking resources to rent another place, back to living under one roof, an effort of graciousness on her part, me the grateful guest. Discovering the comfort of company while sitting across the table from each other, good food on the table between us, conversation was a forgotten joy revealed again in the talk of everyday news and the shared history of raising children, seeing one through a terrible illness along the way. Never mind that certain subjects were skirted and some events were off the radar for now, never mind the wariness flashing for a moment in the eyes, in the bodily shift on the kitchen chair, never mind all that. For the talk was a courtship again, the good parts history between us a starting point to begin again, to see if eventual openness came and the bad parts version could be discussed and accommodations made to lay it all to rest.

Heart Attack Friday

   According to one of the cardiologists, I had a “big” heart attack on Friday. It actually began Thursday evening with discomfort behind the sternum, from stress I thought from financial concerns in retirement and because my wife was ill. Took aspirin and meds for my arthritis and went to bed. Awoke at 4:30 Friday morning with the same discomfort and knew that was unusual but went back to sleep for a while, always the best way to escape. Inclined as most are when it comes to doctors and hospital, I put off doing anything, aware of the discomfort and now some pain on the back of my left bicep—something felt plenty of times from arthritic pain in that shoulder. For short periods of time, the discomfort and bicep pain were joined by slight pain along the jawline and all three were with me until early afternoon Friday.

   My father died over forty years ago of a heart attack at the age of 58, and I had experienced sympathetic chest pains for months after the funeral. Despite being profoundly scared and knowing from that experience the symptoms of a failing heart, I was still surprised I so willingly drove myself to the hospital. The pain was hardly severe, not at all like the pain radiating across my father’s back that had made him sick to his stomach. What I was thinking in going to the hospital was not being in annoying discomfort for the weekend. I had books to read and writing to be done.

   If you ever want to immediately get admitted to the emergency room, do as I did. Tell them, “I know this may sound dramatic, but I need to see if I’m having a heart attack.” From the moment of uttering those words until I was on the gurney in an operating room, naked except for a gown until one of the men put a warmed blanket on me, in that span of an early quick EKG and a doctor asking if I knew I was in atrial fibrillation and had high blood pressure (no to the first, never ever had the second), from the moment of being on a gurney amid a gathering heart team and racing down a hall, from that first utterance about checking to see if I was having a heart attack to having a line installed from groin to heart along mysterious pathways and three stents installed in an artery with 99% blockage, in that time, maybe, maybe, maybe far less than one hour had raced by.

   I was never in a great deal of pain, feeling only flushed warmth during the procedure. There was some pain from two IVs, some slight pain from the shaved pubic start of the pathway to the heart. The endless blood gathering always hurt and bruised, but the most pain came from countless sticky contact pads for always awkward and tangled lifelines connected to them. Despite shaving various hairy areas, the worst pain was the removal of two hand-sized sticky pads stuck to chest and all the hairs upon it in case I needed some shock therapy other than to the head. After just one was yanked off I was ready to confess all the bad things I had ever done.

   I believe there is always a value to serious illness. After my daughter’s almost deadly battle with encephalitis, it was learning not to sweat the countless and ultimately meaningless small stuff that makes up so much of life. Her illness also brought an appreciation of living in the moment. True of all serious illness, I guess. But I learned something entirely different from having a heart attack.

   Dreading it despite knowing it is mostly an infinitesimal part of living, I have always been afraid of the actual act of dying since I was old enough to understand the process. Somehow, lying there on the table before snaking a line up to my heart and installing three stents to save my life, despite knowing I could go into a full-flown attack and die, I felt no great fear, and part of that may have been the speed of the process from when I first spoke to the lady at the ER window. It was a feeling that one of the shoes had dropped, that finally the end process had become visible. Not that I wanted it or welcomed it, but it was a dance with the actual end game that binds all humans most strongly to each other.

   I am not sure what the lack of fear during that dance with mortality means ultimately. Maybe I’ll be a better person. Wife and children would have welcomed that early on. If it means I’ll appreciate even more the time I have left, that will be grand. I will enjoy my family and watching my granddaughters grow into beautifully brilliant young women. So far though other fears are creeping in, no doubt to balance my earlier lack of fear when I was having the heart attack, small daily concerns now: the blood thinner that has created problems already; no leafy greens in the diet because they cancel out another medicine; and being told not to miss taking another drug because I now have foreign bodies in my artery and the body loves to clot around anything not its own. Perhaps another lesson for me from my illness: sometimes you do have to sweat the small stuff.

  Lovely.

  I’m just glad I’m still in the classroom.

Reelin' in the Years

   After my husband passed away, oh, several days later, a nice man took me in.

   My mother has compressed time, my father dead of a heart attack 43 years ago, and the man is my older brother, Willie, who a year earlier brought her to live with him and his wife.

   I am the youngest son standing, bringing my mother for weekend visits where she perseverates like a sad Abbott and Costello routine, the same litany over and over, wondering when her family is going to pick her up.

   Oh, I don’t know what to do.

   What do you have to do, Mama?

   I thought somebody would come for me.

   You’re living with Willie now, your oldest son. You're visiting me, Raymond, your youngest son.

   Her mouth rounds in momentary understanding.

   Pause, rewind, repeat.

   My Mama will spank my butt ‘cause I didn’t come home.

   Her memories are a collapsing star, my grandmother gone almost six decades.

   Sometimes she can be diverted briefly.

   After a supper of fried chicken, I lean over and say she must have eaten a lot of fried chicken growing up on the farm in Mississippi.

   You raised chickens, right?

   Oh, Lord, yes.

   So you must have eaten plenty of them.

   Oh, yes. And eggs.

   And your Daddy had a smokehouse, didn’t he?

   He did.

   She nods once, the memory sharp for a moment of the smokehouse some distance away from the farmhouse.

   Meat was cured there, right, Mama?

   Another nod.

   Probably butchered hogs and calves, maybe some venison.

   Yes.

   There was a garden also.

   Oh, yes.

   A nod, chores growing up: picking butter beans and string beans and peas, potatoes and okra.

   You ate good things on the farm.

   A nod, less decisive, looking down at her hands, rubbing them.

   Your hands hurt, Mama?

   Old and wrinkled, she says softly.

   That’s okay. All of our hands are getting old and wrinkled.

   My Mama is gonna whip my butt.

Daughter

My answer to the good and bad shocks of life has always been to write about them, maybe years down the road as an experience shaded to fit some character I am writing about. Recently my daughter Jennifer, who battled encephalitis and coma for her very life, was diagnosed with rheumatoid arthritis, an insidious and incurable systemic disease I have battled for 35 years, more than half my life. Occasionally poetical with words, not at all a poet, this is what emerged about passing things on.

                 Daughter

  

She comes to visit limping across the yard

along uneven areas of grass and gravel,

favoring her stiff knees, twisting left hip

to swing her leg out to avoid bending it,

every ginger step at the corners of her eyes

as wrinkles appearing and smoothing quickly,

stamped like the beating of her heart.

Smiling, raising wrapped hand, greeting

her mother near the small plum tree snowy

in first bloom, hugging, bound hand on

her mother’s back, another hard-earned smile

and allowing her face to be touched, studied.

Turning body with stiff neck, flashing eyes,

quickly a gritty smile, nodding to her father

on the deck, he lifting a beer, remembering.

The porch steps, the onset, tears in big eyes,

pain-rendered with questions, greeting

dying in his throat, his own swollen hands

little help, useless joints, fingertip sparks

transmitting traits and quirks and bumps,

eye and hair color and skin tone to kin,

the family body made manifest, her spirit

fired at times mixing spirits, locked cells

behind brave new faces, love and fear

constant companions, the gravity of living.

Self Salute

In the arena of accomplishments, in the sort of having something accepted for publication vein, tonight and tomorrow and Saturday my words will again be projected from a stage in NYC. If someone had told me years ago (or whenever), “Oh, yeah, you will have a couple of short plays done in New York but you won’t see either of them,” my mouth would have dropped from disappointment and disbelief. But I’m old enough to know things never turn out exactly how you envision them—whether getting published or having something on the boards. But like with any small success, I do take pride in the accomplishment, in the ability to toss off the small potatoes of being able to say, “Oh, yes, I’ve had a couple of plays done in New York.” Never mind that they were short plays and in festivals or however flawed the productions may have been. Let anyone who asks about my playwriting fill in those blanks with ideas of a huge production with dancing chorus boys and girls and the like. Other than some stories published early on, real accomplishments in the writing arena came late for me, late bloomer that I am. Tonight I will have a drink in an unabashed salute to myself. I plan also to tilt the glass toward NYC in a salute to those actors saying my words and the audiences hearing them. Pardon me, but here’s to me, a boy who grew up loving film and music and all things written and who turned out to be a writer.

The Pallbearer's Social

The first chapter of an adaptation of the play The Pallbearer’s Social.

The Well

   Lacey left instructions to have the pallbearers for her funeral gather in the Well of Mercy Bar, just across the street from the Absent Friends Funeral Home. The bar was a converted grocery store (next door to Harold’s Pool Hall & Jeep Shop) with two old Standard Oil gasoline pumps bleeding rust from all sides, both still standing on the side of the sagging building and serving as hitching posts for folks who needed fresh air after drinking too much. Old metal signs from the bar’s heyday were still nailed to the outside walls, fossilized scales advertising Grape Nehi and Coca Cola and Royal Crown Cola, 7up and its First Against Thirst slogan, Viceroy and L&M Filters, Sir Walter Raleigh that Packs Tight Smokes Sweet, Hav-A-Tampa Cigar, Bayer Aspirin, the First Choice for Fast Pain Relief, Ken-L-Ration dog food, and Bordens Ice Cream and the smiling cow head with flowers for a necklace. There was a handmade sign among the metal ones and one sign on the front door, both declaring in a scrawl, Private Party! Closed Until 7 PM!

   There was still an outside bathroom used by the bar regulars who at some point in the evening stood around in the parking lot, some leaning against the old gasoline pumps to steady their swaying as they slurred words with friends who were standing off the concrete island and scratching with the toe of their boots a smoother place to plant themselves among the dirt and crushed shells.

   The Well of Mercy bar was pure south Louisiana, football helmets and jerseys of different teams hanging from the ceiling and twisting in the stale air, the gear of LSU, Tulane, the New Orleans Saints, the local high school team, all sporting name tags hanging from lengths of fishing line. The jersey from LSU, purple and gold, had the number 20 on it, the number 17 on the green jersey from Tulane, and the Saints jersey with the name Taylor on the back, all dusty and fading from years on display. Behind the bar a handwritten menu with curling corners was tacked to the wall listing what po’boy sandwiches were available: roast beef, ham and swiss, catfish, shrimp, oyster, crawfish. An old upright piano sat in the corner of the bar alongside a snare drum, both near the juke box and an old style South Central Bell public telephone; tables and chairs were scattered about, both showing plenty of wear: the cloth-backed vinyl tablecloths stained and torn, the padded chair seats split and the material inside clearly visible.

   Alone in the bar and lounging in one of the chairs while looking around, it occurred to the guy dressed in a dark suit at one of the tables that the Well was still the hub of civilization here in Travellers Rest, some folks spending more of the evening in this watering hole than they did at home, and it was sad and funny to Adam Macauley to know living here hadn’t changed much, the after work idleness still the same: drinking and forgetting the everydayness of drinking and forgetting.

   Adam glanced at a journal he had been reading. It was all there, the important parts anyway, the transcriptions of Lacey’s sessions, many of the pages copied from her own journals she kept all of her life, meticulously copied by Adam with one of his favorite ink pens he collected, dog-eared entries of his own musings, and even recollections of conversations that all pertained to Lacey, no matter when they took place in those long ago days.

   Putting the journal on the table, Adam got up and slowly toured the bar, checking his memory against the way things were now, smiling when he came across his carved initials on the top of the piano, letting his hand fall to the keys and playing a chord. He dusted his hand off and glanced up at the ceiling, remembering rifles and two black pajama uniforms of the Viet Cong once hanging among the football jerseys. Back at the table—sitting and extending his legs out in front of him, closing his eyes and letting flashes of Lacey play out in his head—he had no need to open the journal for any prompting, from thousands of readings over the years he knew the placement of every comma and period, every single word written there.

Atomic Shadows

There were two big old boys in the neighborhood living a street over from us on Lafaso, Mert and Dick Tugwell, older, maybe my brother Wayne’s age or maybe even older than that. They are nice guys, fun-loving, always horsing around with the younger kids, and I am one of those one day, doing whatever, maybe trying to tackle one of them by wrapping arms and legs around one of their stout legs. One of the Tugwell brothers reaches down and pries me off, grabbing my legs with one hand and the other hand on the back of my neck, lifting me up and making gorilla noises like he is going to slam me to the ground. When he does release me on my feet, I am aware of slight pain under my ears, his thumb and middle finger pressing under my ears while suspending me above his head, like some native in a Tarzan movie holding up a sacrificial child. It is not long before there are rounded lumps under each ear the size of a tennis ball. What is lost is whether I go to the doctor then or the next day or go quickly to the emergency room. The next distinct shadow is being in one of the hospital rooms, one bed only, windows always presenting a view of home.

Whatever my illness is—ruptured lymph nodes or salivary glands?—it keeps me in the hospital as a pampered patient for weeks, doctors coming and going and hushed whispers to my mother, nurses coming and going and a daily series of injections in my buttocks, first one cheek and turn the other, please. There are two other particular shadows imprinted during that time.

After several days, my backside looks like a human dartboard, a chaotic pattern of blue on both cheeks like bruised fruit. And the injections sting and the hurt lingers. Finally one of the nurses starts giving me a sharp slap on whatever cheek is up for duty right before the injection. It works, her sharp swat masking what quickly follows. Bless you, nurse-angel, whoever you are.

The other ghost image is books—probably many of them comic books—scattered always over the bed, on the nightstand, stacked on the window ledge. There is no television in the room, I don’t think, I would remember that, so the days are spent in adventures far beyond the hospital room, with Batman and Robin and Superman in thrilling deeds of capturing criminals and rescuing always grateful ladies in distress. There is the absolute joy also of my mother reading to me, being able to lie back on the pillows and watch the changing sky while those escapades play in my head, the imagined stories fulfilling some need in me I didn’t know I had, allowing me to leave behind any pain in my neck and backside, presenting an escape route from the hard truths of growing up in the neighborhood nearby.