Foreshadowing

It occurred to me only later that there was a hospital episode when Jennifer was a senior in high school that was a sampling of what was to come for her and us. When she contracted encephalitis and battled for months to stay alive while in a coma and battled for years rebuilding her life from the ground up, the earlier botched tonsillectomy was a foreshadowing of the dark days to come as parents, helpless, worrying about a sick child, worrying that earlier time about the outcome of a second surgery needed to correct the weakness of catgut or silk in the back of the throat, the placement or tightness of the sutures, all done in the operating theatre by a masked man performing badly.

The initial surgery went well, we thought, all according to form, we thought: a sedative to relax Jen, an intravenous line in the arm for fluids and antibiotics and whatever, general anesthesia before the procedure started, a breathing tube through the nose and down the throat, the mouth propped open, and the tongue no doubt pulled to the side like a thirsty hound on a summer day, snip, clip, suture ligation, the recovery room until the anesthesia wore off, and finally the white-sheeted bed.

But all during the day, after Jen was awake and aware, she said she could taste blood and assurances constantly came from us and the nurses about that being normal. She threw up once, twice, three or more times, each episode filling one of those kidney-shaped yellow plastic bedside pans. Aahhh, that will make you feel better, to get all that blood out of your stomach. And it went on and on until early evening. Finally, finally, the man was called back, unmasked now, Dr. Breaux, so obviously put-out by being called and having to come back, doubting until he probed the back of Jen’s throat with long crooked surgical tweezers and mumbled something about the sutures, straightening and telling the nurse to call a surgical team back to the hospital.

Now more assurances to Jen from us that everything would be fine, a stitch needed repair, that was all, and the pan again filling up with blood, her teeth and lips smeared with bright blood. You’ll be okay, here’s the gurney, slide over, that’s it, we’re going with you as far as we can, everything will be fine.

A nurse maneuvered the gurney out of the room, bumping the door facing a couple of times, pushing Jen by the nurses’ station, some of them registering slight surprise, and Jen sat up suddenly, hemorrhaging, gagging, leaning over, and the blood coming out, a projected wide stream like dark rusty water thrown across a yard out of a full bucket, covering half the gurney, Jennifer’s lap and legs, and splashing down to the floor, some of it rolling down the framework of the gurney as if the chrome tubes were being magically transformed to a bright Christmas red.

The speed of the gurney picked up and Dee and I were racing down the hall to keep up, drops and plops of blood marking our trail.

Dee and I waited in an empty pre-op room, the stillness and evening quiet unsettling, the worry now manifest in furrowed brows and tight lips and eyes moist with concern, pacing, arms across our chests, hands squeezing biceps in rhythm with our thoughts, Dee suddenly giving out a quick sob, telling me to please come hug her, asking me why I didn’t know she needed that, me wondering for a moment what was pushing me to stand at a distance in the empty room, apart from her, some solitary grieving ritual denying us both comfort.

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.

Laurie

When Jennifer is seizuring in the hospital while in a coma, when her body is bucking and then going rigid, repeating that awful pattern again and again, I do not remember in that moment of Laurie doing the same in the 4^th grade, age 9, the jolt like an electric shock when Dee screams from the girl’s bedroom. Laurie has fallen between the twin beds and Dee is trying to lift her up without success and screaming what is happening to my daughter God help me what is happening? I grab Laurie and carry her in a scramble to the car, Dee driving wildly, me in cutoff overalls without even a shirt on, some vision for the hospital nurses of a redneck disturbed out of a nap on a sunny afternoon, barreling down Essen Lane to Our Lady of the Lake Hospital, talking all the time to Laurie, who keeps trying to open her eyes but only her eyelids fluttering, thinking if I can get her to wake up that everything will be okay.

So it does not occur to me that Jen’s seizure is like Laurie’s, life repeating itself and making no sense in the chaos of the moment. For Laurie, after a CAT scan, it is a subtle abnormality in one squiggly brain wave, some slight difference in the pattern signifying a convulsive disorder and no longer called epilepsy. The pediatrician for both girls, Dr. Ben Thompson, puts Laurie on a daily dose of Phenobarbital and it evidently works (never another seizure) until Laurie finally stops taking it after high school, deciding herself that it is no longer needed.

The seizuring experience is so much the same for both daughters, Laurie’s less severe and life-threatening and of shorter duration, and it surprises me Jen’s episode doesn’t recall the other until now because they are the same in one respect. The worry of the unknown and waiting for tests, each time whether pushing through the doors to see Laurie in the Children’s Ward with colorful walls and painted children at play, whether opening the door to Jennifer’s room each time, both are moments to wonder and feel overwhelmed because sickness and disease and the death of a child is the absolute worse of human experience for helpless parents.

Christmas Eve, 1993



Baton Rouge General Hospital

Christmas Eve, 1993

   Jen is restless, back under the surface, finally quieting before dawn. An early morning trip home, a shower, thinking about the two hours yesterday that Jen surfaced and treaded water, looking around at all of us in the room, anxiety attacking constantly. I don’t crawl into bed like I want after showering but drop by Ronnie McCallum’s for a quick visit then on out to Laurie’s. While waiting for her before going to my mother’s, I crawl under a blanket on the couch and doze. Have to laugh when I am startled awake by the sound of an IV machine on Days of Our Lives.

   The trip out to Walker to eat gumbo and visit family while watching the kids tear open presents doesn’t last long. Not like previous all day affairs when all of us get together and spend the entire evening laughing and reminiscing only about the good times, my father feeding the dressing to the dogs, Dee and I in the yard putting a trampoline together in ten degree weather, our fingers sticking to the circular metal, trying to stretch cold springs that give only slightly; and on Christmas Eve longer ago, sometimes my father and I fish, or he, Wayne, Willie perhaps, maybe his son, Dennis, will squirrel hunt early in the morning, the mist rolling close to the ground, the anticipation of presents to come the true Christmas gift.

   Visitors all day long. Jen is much shallower, as Dr. Rogers once said, aware of all noises, movements in the room, greetings and touches from family and friends. For a few moments she emerges again, but her disoriented look which should be heartening is only heartbreaking.

Bliss Stations



   With a nod to Joseph Campbell, there are two Bliss Stations in my life: weekend mornings, getting a cup of coffee and getting back into bed and reading for an hour; and the time in front of the laptop arranging the puzzle pieces of language into my own song. One is absolutely Heaven, the other sometimes short of that.

   Writing is always tough and sometimes made more so if the subject is personal. Working on a memoir about growing up in south Louisiana, about standing at my daughter’s hospital window and looking over the old neighborhood, aware of what went on down there and aware of what was being played out in the room behind me, my daughter critically ill and in a coma from viral encephalitis. As tough as it was to do, keeping a journal during those dark days kept me sane, literally. And now, dealing with all that again, I keep a copy of Dani Shapiro’s Slow Motion nearby to remind me that writing always includes bravery.

Journal / Wakeup

Baton Rouge General Hospital

Thursday December 23, 1993

   2:45 p.m.

   Jen comes crashing to the surface.

 

   Literally bolting upright. Eyes wide open. Coughing. Sucking in a deep breath. The bubble of the coma showering around her, long dark hair plastered to her head, the oxygen line and stomach PEG and IV tubes running down around her like water.

   (Flashes of the trach dislodging.)

   Panic, immediately, anxiousness. Shying away like a wounded animal when we approach to stroke and talk and tell her what is happening. Jen keeps looking around, at us, the room, her arms, the door, the stone dropped into her new consciousness (forever different from her life before) rippling anxiety across her face.

   Dee grabs my arm, says, I think we just had a giant wakeup.

Journal / The Fabric of Time

Keeping a journal during all those dark days gave me an outlet, a foundation, something to grab and weather the everyday changes that shaped everything. It was a time of life folding back in on itself, the view from the hospital window of the old neighborhood, the history there, where even Jennifer lived as a child, and the history of the hospital itself, where I was born, where family members had died. Life repeating familiar patterns and doing the best to make memory make some sense of it all—and both memory and events co-existing in the now, both alive and in a dance as one.

Baton Rouge General Hospital

Sunday December 19, 1993

   Everyone rests for a change. Good to see Jen looking comfortable. She dries up after the tube is taken out of her nose. Sinuses were drowning her, producing so much mucus her body couldn’t cope. Her lungs are clearing also. Bill Scott, the Respiration Therapist, says the change from one day to the next is remarkable.

Wednesday December 20, 1993

   Dr. Wen, who is scheduled to do an angiogram, comes by to explain the procedure. A tube is inserted in one of the large arteries in Jen’s leg; up, up to her brain where dye is released (150cc) and then x-rays are taken. He explains risks: 5% chance of complications: plaque flaking off inside of the artery causing a blood clot; possible reaction to the dye; breathing complications (which Jen certainly doesn’t need). Thinking it best not to put Jen through more procedures just to rule out a long shot, seeing if she has a connective tissue disease narrowing blood vessels, (what about the diagnosis of encephalitis?), we tell Dr. Wen to cancel the test. Later, Dr. Rogers agrees the procedure can wait.

   My mother stays with Jen while I go to LSU for the first time in weeks. Dee is at her own doctor’s appointment. They do another EEG while we are gone and the results tonight are encouraging: 6 to 7 peaks in the scale where 8 peaks are normal. Jen had 3 peaks last week. Tears come easily and the fear of expecting too much.

   Jen is moving more tonight, coughing up lots of junk through the trach tube. Oxygen monitor keeps alarming, producing even more anxiety.

Thursday December 21, 1993

   The troops come at 9:30 a.m. and haul Jen on to the stretcher, get portable oxygen bottle, rolling stand for her IV’s, and away we go to the surgical waiting room, waiting for PEG tube surgery by Dr. Howell scheduled at noon. No one knows why we are there so early. Back to her room, waiting, more monitor alarming, longing for some balance:  stomach PEG in for the nourishment she needs desperately now, central line for all the IV’s so her bruised and collapsed veins can mend, some stabilization so she can begin the long climb back.

   Troop movements again, later than scheduled.

   Dee and I sit in the surgical waiting room, feeling so much anxiety it is impossible to voice our fears. Each procedure, setback, infection, is standing on the edge of a precipice, eyes closed, toes over the edge, the high wind of no control roaring, pushing, making steps forward the only option. At 2:10 p.m. Dr. Howell comes into the waiting room and says the surgery went fine, no problems, adding that Jen’s illness is tragic. Amazing how many other people at the hospital know about the circumstances of Jen’s illness; not just the nurses who monitor her, give shots, check vital signs, not just the Aids who change the bed, wash her, deal with the excrement when she does manage to have a bowel movement, not the doctors who breeze in for a moment, or the ones performing various surgeries to combat problems, but people on the fringes, nurses on other floors, other doctors, people visiting other patients that we have no contact with, all somehow know of Jen’s struggle, the dark battle now with an encephalopathy no one knew about while she wandered the halls of BHU, hallucinating, pulling her hair out, wanting the children released.

Wednesday December 22, 1993

   A good night. No complications from the stomach PEG. Doze a few times until 4 a.m. while Dee manages to sleep several hours. Home for a shower and a couple of hours of sleep. Hear the telephone ring but can’t get to it in time. Think of calling the hospital but drift away before I do. Wake up after 10 a.m. and call. Dee says she called around 5 a.m. to tell me Jen opened her eyes. Not the first time that’s happened, the vacant stare, the distance from anything visible in her dark pupils, but still encouraging because we want it to be.

   Back to the hospital at noon. Dee leaves to rest at her apartment. A fairly quiet afternoon: suctioning the trach tube occasionally, talking to Jen, touching her, stroking, patting her hands, willing the words to draw her out, watching the oxygen monitor, the BlankeTrol gauges. Blood pressure and pulse are up in the afternoon. Anne comes in and starts Jen’s liquid meal through the stomach PEG, the pale green fluid is the same color as the paint on so many walls in medical offices and hospitals. Jen opens one glazed eye for a few seconds, long enough for me to ask her is she’s just checking things out.

   Cold, rainy, sleety.

   Leave at 4 p.m. for errands and when I get back Dee and Dawn are washing Jen’s hair with a dry shampoo product. Sean from Respiration does trach care, followed by one of the nurses with a suppository. Since the tracheostomy, Jen has more moments when she appears to be awake, but she looks so frightened, lost, posturing now with facial contortions and trembling legs from staticy commands her brain is sending. Heart rate up to 150 plus which raises the anxiety level in us. Keep expecting the other shoe to drop.

   Dr. Stewart, in another fuzzy outfit, matching jacket and hat, mentions during her rounds that the next stage for Jennifer is a rehabilitation unit of some sort. Seems a bit premature to us but Jen’s illness has spiraled far past Stewart’s abilities to handle. It is Dr. Meadors we depend on and who, we are told, charted that he would decide when it is time to move Jen.

   Long after dark, Dina Smith comes in to visit, arms loaded with bags: a musical stocking, a musical doormat, a small Christmas tree, ornaments, icicles. Hal just can’t make himself come to the hospital, she tells us, seeing Jen like she is would devastate him.

Thursday December 23, 1993

   A long night of posturing. Seems so painful to Jen, her body so out of control.

   Later in the morning, Jen is “awake”--coughing up clear mucus through the trach tube (our favorite subject)--when Stewart comes in again and sees Jen with her eyes open and legs churning.

   Has she talked at all?

   (Virtually impossible with a tracheostomy.)

   Jennifer, do you want to talk to us?

   Jen shakes her head and Stewart is impressed enough with the response to relate the story to Denise who comes in to stop the beeping IV.

   Posturing is less this morning but Physical Therapy decides to bring splints to put on Jen’s hands and feet to hold them in a more normal position, to keep the writhing and stretching from damaging ligaments.

   Aunt Vivian calls. Flowers from Tracey and Sharon.

   Home for a couple of hours then out to LSU to deposit my check and get some cash before the holidays. Back to the hospital mid-afternoon. My mother is visiting.

   In so many ways it is a day like most others recently: carrying on and dealing with the constant monitoring of machines and infections and bodily functions (or lack of them), 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 is 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 something, AIDS perhaps, wondering at his thoughts as he stands at the end of the corridor looking out the window, knowing (unlike Jen) just how ill he is, knowing the prognosis is dim, dealing with it the only way any of us can, 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.