Wednesday, April 30, 2014

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.
     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.