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.
