A virulent strain of grief
And then there was what happened to Kevin.

I’ve written about Kevin,
my mother’s long-term boyfriend, here before, in
short bursts of roundabout language. He came into our
lives when I was fourteen and nothing was ever really
the same again. By the time I was fifteen, I was
living in the Little House with disastrous results
and he and my mother were at the thin edge of
eighteen tumultuous years together. Kevin is starting
to lose his mythical qualities, has become more human
in my mind in the last year, more culpable and weak.
He was a bully, really, a smart and witty bully,
though that of course was not the whole of him.
[Warning:
The below goes into detail about an illness and a
harrowing hospital stay and may be upsetting to some
readers.]
In March 2002, Kevin, 55 years old, died of, well,
it’s a little murky. He was in the final stages
of myelofibrosis,
a bone marrow disease, though it was probably
pneumonia that did that last dirty work. With
myelofibrosis, the bone marrow becomes fibrous and
hard. Blood production that normally occurs in the
bone marrow moves to other organs -- the spleen, the
liver -- in a last-ditch effort to make blood, a
phenomenon with the poetic name extramedullary
hematopoesis. These organs try, but ultimately fail,
to make useful blood. Instead, they produce bad
blood, the cells immature and misshapen, blood that
does a half-assed job of keeping the body healthy.
People with myelofibrosis are often anemic; they
bruise easily and are susceptible to infection and
bone pain. While there are drugs to manage this
disease, there is no cure outside of a stem cell
transplant, which is always a dicey position. If you
have it, one way or another, myelofibrosis will
eventually kill you. Or more accurately, an infection
will kill you. Or you will develop leukemia. Or you
will develop a wasting illness. Or your liver will
cease to work (because of the extramedullary
hematopoesis).
Before March 2002, before we called in hospice and
accepted the fact that Kevin’s death was imminent,
Kevin spent six months in the hospital, nearly all of
it in the Critical Care Unit (like an intensive care
unit) or a unit one step below Critical Care. Trying
to write about that time in a way that makes any
sense is impossible. I’ve tried it, tried to come up
with a timeline and a reason why he ended up on a
ventilator (aka respirator) shortly after he was
admitted and how early on we thought he was going to
slowly bleed to death until a miracle worker
hematologist/oncologist came up with a genius
solution to get Kevin’s blood to clot, and how Kevin
couldn’t swallow because his epiglottis was damaged
from his emergency intubations, so he couldn’t eat
and how there was a doctor we called Dr. Death
because he insisted on telling Kevin he wasn’t going
to make it, let alone walk again (he was right on the
former, wrong on the latter). Kevin was on the
vent/off the vent. He kept on getting pneumonia. He
was hooked up to tubes and lines, trapped. But alive.
Fall 2001 was full of death and fire, of anthrax
scares and work closures, of mail that came to the
federal library where I worked months old, crispy and
irradiated. It was the beginning of Kevin’s long end,
a journey that required great vigilance on my
mother’s part and the amazing efforts of a large
number of doctors and nurses. Being in CCU for six
months is incredibly intense, all-encompassing, and
stressful, and when a patient is as fragile as Kevin
was, you have to be vigilant. It isn’t that the
professionals aren’t competent, it’s just that they
want to do things, think that action is always the
best course. And sometimes it isn’t.
When I sat down to start my NaNoWriMo novel, all
those details of his hospitalization came out,
details I have stored away for years: the sound of
the ventilator and the beeps of IVs that need
attention; the smell of pneumonic mucus as I
suctioned it out of Kevin's trach; the image of Kevin
trapped under a blanket of tubes and devices, so
fragile you didn't want to touch him (and the
too-late knowledge that he must have been desperate
for touch); the horrors of his frequent intubations,
emergency procedures where doctors had to essentially
jam an air tube down his throat after his oxygen
levels dropped precipitously; the rushed meals at
Taco Bell Express, knowing we had to get back and
that eating in front of him when he was getting his
food, this green sludge, through a stomach tube would
have been horribly cruel; how skinny, impossibly
skinny he became. How, after being bedridden and
hospitalized for three months, he took his 80-pound
frame and a walker and did halting laps around the
CCU, in an act of pure will.
So all this came spewing out last month, disguised
under a new premise with a much younger protagonist.
After the month was over and the first draft off my
head, I realized I had a lot of legwork to do. For
example, I know next to nothing about the disease I
had chosen to grace my unlucky character with. And
what do I know, really, about parental grief, which
is a particularly virulent strain? I've been doing
research, reading books and looking at websites.
There is one blog out there, very detailed and
well-written, created by a mother who was chronicling
her little boy's fight against cancer. That little
boy died in September. The whole thing is horribly
sad (and as I read it, I wonder: why, exactly, am I
doing this?).
When you are in the middle of a
life-and-death-struggle, the intensity of keeping
someone alive, of trying to make them well, it's all
you can think about. Everything becomes medical and
you find out all you can. You learn about the
strength of nurses and the support system that crops
up in a hospital. You learn to live with things you
never thought were possible before. You are steeped
in the smells and sounds of illness and it feels like
it will never end. You don’t want it to end with
death, but sometimes it does and you have to let go
of the struggle. I read this blog and I cry, for this
family and the little boy that will never grow up. I
hope that I can do justice to him and to Kevin and to
all the people who have experienced such prolonged
pain.
The kid at Kevin's grave on Maryland's Eastern Shore,
April 2009.
Perhaps this is an impossibly tall order. What I'm
looking for now is authenticity, a way to write
something that sings and is true and real, that
doesn't exploit illness as a book topic, but brings
it to life and honors those that have gone before us.
It's daunting.
Top image: Kevin at Georgetown
University Hospital, January 2002, about three months
before he died.
Prognostication

In my dreams, the dead are silent. I’ve never had a
good conversation with a single one of them, just
offer my apologies, bake the bread, pour the coffee.
What is the guilt about? The dead no longer care
about my transgressions. Isn’t it enough that I hold
them here in my subconscious, treat them as gently as
I would a freshly-laid egg?
But this dream was different. We were going to visit
Kevin, who has been gone for over seven years now. As
in real life, I was nervous: would I react properly
to him? Would he toss the verbal slings, so subtle
and cutting, if I didn’t pick up on something, if I
reacted too slowly? Or would he sit there, blue eyes
glowing, as my mother and I circled him like
butterflies, flitting here and there in our attempts
to placate?
Kevin spoke. He used the ethereal language of dreams,
of those who are now ashes and light, but in that
nasal New Jersey accent that I haven’t been able to
replicate in my mind for years. And he was funny, so
funny, because Kevin was bitingly funny. I laughed and
realized how much I missed him, how much time had
gone by and then I woke up, not remembering a word of
his complicated meta-joke.
Time flies on and I die a little every day, lose
another connection, feel the pull of a long-ago past.
Yet my grandfather still shows up at the old house. I
smell his cigarettes, breathe in sawdust, too-sweet
coffee and turpentine. He waits in his cell of a
room, a voiceless old man in a flannel robe, unshaven
and glassy eyed. I rush past the sink filled with
dirty dishes, walk a path of slate to get to a
mailbox that hasn't been opened in years. Sometimes
we take his car for a complicated drive to
Christiana. Maybe we are heading to the hospital,
waiting for someone to hand me a small bundle,
something I've forgotten.
The dead appear without explanation or warning.
Carolin greets me in a too-bright dorm basement,
fixes me with intense eyes. David Anderson sits in a
classroom, shoeless, staring at the algebra equation
on the board. Frank the cat meows for food that I
don't have. And my grandmother, the one I ache to
see, is sick of my inattention and has stopped
showing up at all.
Someday, no one will know that I was sixteen and
angry once. They will remember an old woman deeply
lined, forgetful, with clouded-over eyes, demanding
and harmless. Inconsequential. As though I had been
born without desire, without the power to wound.
Image: Postcard, date unknown.
My hands untied
Kevin, summer of 1984.
Enter spring–let's say April–1984, West Street, Wilmington, Delaware.
Birds are singing. The tulips and pansies in our raised beds are starting to bloom. Recent March winds have deposited the remnants of chaos, muddied papers, dead leaves and tree limbs, in the alleyway. The winds lifted deck chairs against back fences, turned over plastic flower pots, battered pedestrians. They blew Kevin the poet-carpenter, intellectual powerhouse and gin guzzler, in down the street, saluted him with a flurry of cherry blossoms.
My mother invites the new neighbor over for dinner. He seems strange, a little awkward in his old-fashioned glasses, his blue eyes intense and clear through Coke bottle lenses. Kevin speaks with a touch of New Jersey nasal and renovates and flips houses for a living. He arrives lean and tanned, armed with words of sharpened steel and a large bottle of Gordon’s, his old blue merle collie Barney by his side.
What could I do? I was fourteen. The last guy in our house didn’t even speak when I was at the table.
Here’s what I didn’t do: talk. Smile. Instead I just sat and shoveled in the food, exuded resentment, made infrequent eye contact. Maybe I smirked. And Kevin, a man I had just met, called me on it.
“What’s your problem? You’re just sitting there, sucking all the air out of the room.”
I have no memory of my response.
It wasn’t until yesterday, as I was attempting to capture this pivotal moment yet again, looking over what I’d written almost a year ago on that same dinner, that I realized: I blame myself. Reading over my early attempts is somewhat painful. I was straining to describe that night, to explain Kevin’s poetic rockstar persona and my mother’s deadly attraction to him, to explain my role in my own rejection. The end of parenting, my premature emancipation, the series of adult situations I got into before my time? Culpa. Mea culpa. I should have put on the charm, talked, given a little bit that night. I should have been someone else.
If I had won Kevin over that evening, maybe my mother would have stayed engaged in my life. She might never have started bringing dinner to him, eating in his dusty dining room every night while I ate alone. I wouldn’t have begun wandering the Wilmington streets after dark, wobbly with purloined gin, smoking unfiltered cloves and blasting the Dead Kennedys from my Walkman. The Little House would have stayed empty. The end of innocence could have been put off for another couple of years. If I were a better person, a different person, no one would have told me that I was evil, the root cause of family turmoil.
I know. I know. My brain tells my heart that it would have made absolutely no difference in the outcome if I had smiled or curtseyed or made insightful conversation about Nietzsche and Wordsworth. To be honest, until yesterday, I didn't know I felt this way. I blame myself.
Why do children take responsibility for things over which they have no control? Why do adults shift the blame to the helpless? And why, when we molt and grow and leave our child forms behind, does this sense of responsibility for our own small fates, this idea of being the masters of our abuse (if only I were nicer or less shy or stronger ...) carry on into our adult life?
The child decides that she is the cause of her mistreatment. The adult lets those early experiences dictate her behavior. We find ourselves recreating situations again and again, little kids in the guise of adulthood, sifting our lives through the rusty emotional sieve of the formerly helpless. We choose partners who fit into old scenarios, make decisions based on faulty data, try to get it right this time. With our motives hidden and our reasons obscured, the do-overs usually fail. Then? Familiar pain and reinforcement of our feelings of worthlessness.
Or maybe it's just me who's felt this way. Yes, I've done this, set up the scene, chosen guys who reject who I am, who blame me for their own shortcomings. I've blundered my way through friendships, the sullen fourteen year old in a thirty-year-old's clothing. And although I have stopped replaying the same scenes over and over again, I still have an overarching sense of responsibility for the trajectory of my childhood. My invisible scars feel completely self-imposed, my exposure of them a shameful confession. I feel rotten from the inside, capable of destroying entire worlds. Run from me before I drag you into the muck!
But I'm not that way. I'm not.
So I'm writing my path to self-acceptance, still trying to forgive myself and my family, to look at the world through clean eyes. I don't want to shift blame. I want to let go of the entire concept of it. After all, I'm here, alive, doing so much better than I ever thought I would be. It's time to let go, to untie my hands and live fully.
I figure I'm about 20% there. Maybe more. And if I can do it, you can too.
Coming up: February's blog, a return to the Maureen story (we'll skip over the guess who's coming to dinner segment), and some awards. Not necessarily in that order.
Not fade away
Mick Jagger, circa 1969, from Rolling
Stone.
The centerpiece of Thanksgiving
dinner was a rockfish one year. Kevin had caught it
himself, straight from the Chesapeake Bay. Mom
stuffed it with breadcrumbs spiked with chopped
fennel and onion, and there were mashed potatoes,
cranberries, and a nod to green, string beans on the
side.
We ate by candlelight, as usual, talked about
politics as usual. I wish I could go back and capture
those conversations, remember the deep level jokes
and high level discussions. Almost any dinner with my
mother and Kevin was devoted to real conversation and
humor, sometimes dipping into reminiscence. It was
the closest we ever came to feeling like a family.
Like the night a couple of years before Kevin got
sick, when he was just starting his PhD program at
Penn, and Augie the collie was a puppy. I had taken
the train from DC to Wilmington to visit and things
were unusually smooth, no arguments, very little
baiting. We ate sautéed chicken over vermicelli in
the candlelight. The entire dish was sprinkled with
breadcrumbs toasted in olive oil, garlicky and herby
and delicious.
The conversation turned to the sixties. Kevin had
taken a year off from college in 1966 after being
busted for selling marijuana (a setup, he claimed)
and he headed off to California, hitchhiked down the
coast. He talked about Dylan going electric,
mentioned the rivalry between the namby pamby Beatles
devotees and the rebellious Rolling Stones fans.
There was talk of high school dances, the moves and
the moments. The radio was playing music from that
era and he and Mom started to slow dance as I watched
from the table.
What do you do when a family
culture dies? When a powerful personality disappears?
The center did not hold. We’re still trying to create
our own gravity.
Two ways of looking at it

I wish I could explain the
importance of the notebook. It’s one of those old
black and white composition books, barely held
together by 45-year old glue and stitching, the edges
of the pages the color of dead oak leaves, cured by
time. An artifact, a little piece of Kevin,
half-filled with poems of late adolescence, poems
that he probably wrote in his senior year of high
school. They are short and generally angry, each one
typewritten and stapled or taped to the front of a
page.
If I could explain the importance of the notebook,
maybe I could explain the importance of Kevin. How
can someone who tried to destroy me, who battered my
mother emotionally, be so key to who I am? Kevin was
extraordinary. I’ve never met anyone like him, a man
who pushed himself out of a childhood of emotional
and physical abuse and formed a self out of will and
ashes. He was a poet, a self-taught carpenter, a
working class intellectual. In the midst of
fatal
illness,
he completed his dissertation and received a PhD.
He was also so wickedly funny that my mother and I
still laugh when we remember his stories and
jokes.
Kevin sometimes ripped us to shreds with that
knife-like wit. He was an active participant in the
neglect that led to my pregnancy at sixteen. Whenever
he saw hypocrisy or hidden motive – which was often –
he skewered the hypocrite, uncloaked the motive. His
ability to see the darkness in himself and others
never took into account the overwhelming goodness we
each have, the lightness that makes up most of who we
are.
I have a lot of empathy for him, whose cruelty and
black math was caused by a childhood of pain and
anger, but it probably helps that he is off stage
now, six years dead. It was a long and painful exit.
Kevin didn’t deserve to suffer, to be hospitalized
for six months, to have his body whittled down to 80
skeletal pounds. He didn’t deserve to lose his
ability to swallow and sometimes to breathe
unassisted. No one deserves what happened to Kevin.
But that time of suffering was also a time to make
peace. I was at the hospital for hours almost every
day, there for both him and my mother, keeping
company, being a second set of eyes to make sure no
mistakes were made. I was there for comfort.
It gave me a chance to prove my humanity, to show
that we all have the ability to be good. Even him.
Even me.
Sometimes I still believe it. But writing that
paragraph about how I benefited from Kevin’s
suffering leaves me with a dirty feeling, as though I
relished the opportunity to be redeemed through his
pain. It wasn’t like that. I was there because I
wanted to be, couldn’t imagine being anywhere else.

Kevin’s final day stretched and
stretched from early morning into late afternoon. A
small group of family gathered in his hospice room
and listened to him wind down, heard the silent
spaces grow between each breath, watched his heart
flutter out from under his ribcage. Outside,
daffodils were pushing through once-frozen ground and
the forsythia was in bloom. The world was coming to
life again as we sat and waited for death.
It came with a dramatic final exhale followed by dead
quiet. The dog broke the silence with a bark, my
mother reached for me and Kevin’s son, held us and
cried. Mom later said she felt Kevin’s energy leave
his body, had an image of him walking along a river
path against a cloudless sky, his old collie Augie by
his side. When Kevin's brother thanked me for my
presence, I said, "I'm so glad we had this time," and
immediately regretted it. What was I saying? Those
six months of dying were great? What a wonderful
opportunity for me?
That night I woke up after midnight to the pressure
of Kevin’s hand on mine, a grateful and loving
presence. Don’t be hard on yourself. You
were there for me. Thank you.
Then he was gone.
Two
Ways of Looking at It
Kevin Sheehan (Knife Gift)
The magician, who is about to perform,
is wearing a suit which belongs to
his father. No one is supposed to know
that he is not his father. His first
trick, which involves some
simple sleight-of-hand, is well-received.
he bows, and the suit collapses.
And what if I would not grow up,
would not perform
the necessary murder. So what.
Was it any of your business?
I chose to be the child, hurt
and unhurting, but my body,
my beauty, betrayed me.
Louise Peevish
"Oh, Louise is being peevish again," we'd say. "Louise Peevish."

It was the move back to Maryland that did her in.
There were stories of other dogs that had cracked
after hearing the tests at Aberdeen Proving
Ground,
dogs that pushed their way through second story
window screens, desperate to escape the sounds of
the bomb and munitions tests across the river. The
aural bombardment contributed to Louise’s general
nervousness, but now when a thunderstorm blew
through town, she was absolutely inconsolable. No
drug calmed her. By the time you got the pill
down, the storm had passed.
One afternoon, my mother drove with Louise to the
local grocery store. Mom rolled the windows down a
safe distance, locked the doors, and entered the
market.
She was filling a plastic bag with green beans when
she heard a little girl’s voice. “Look, Mom, there’s
a dog shopping in the Acme.”
“Not my dog,” thought Mom, as she weighed the beans
and continued to the toiletry aisle. The little girl
spoke again. “Look, Mom, the dog is still shopping in
the Acme!”
“Not my dog,” thought Mom again. She glanced past the
row of shampoos to the plate glass windows – were
those thunderclaps she heard? – when she saw Louise,
panting heavily, on the run from one of our favorite
check-out guys, a kid who worked his way up from
bagger and always made friendly conversation. Louise
darted for the automatic doors, heading along the
sidewalk in the direction of the Chat-n-Chew.
Abandoning her cart, Mom also ran for the door.
Outside, storm clouds were gathering force. She
watched Louise scatter a school of carpenters, men in
dirty jeans and mud-caked work boots, as the dog
passed the restaurant and made a left into the
hardware store. Mom followed, pushing past customers,
until she found Louise in the back of the store,
trembling by the PVC piping.
My mother stayed there with her until the storm
passed, then walked her back to the car and drove
home, sans groceries. Apparently, the dog panicked
when she heard the approaching thunder, pushed
through an open car window and went looking for Mom.
We were grateful that she wasn't hit by a car.
About two years after the Acme incident, I came home
from grad school for a visit. Things were grim.
Kevin, my mother’s long-term boyfriend, had been
diagnosed with a rare bone marrow disease. My mother
was close to declaring bankruptcy. And Louise was
getting more peevish and skittish.
Her fits of panic weren't limited to thunderstorms;
now the dulled explosions from Aberdeen were having a
similar effect. She was terrified. If no one was
home, she would attempt to escape -- Mom was afraid
she would force her way through a closed window,
pictured a return home to bloodied shards of glass
and no dog. If someone was home, she would scratch
and pace, pant and whine. Louise was suffering.
I went with my mother to the appointment. We sat with
Louise, stroked her as the vet depressed the needle.
It was over quickly.
On the ride home, we didn't speak.
A Dream of the Snow
By the time he died, after eight years of illness, we had reached a peace. I loved him like a father.
Today would have been Kevin's 62nd birthday. (My mother just called to tell me she had a pain in the neck, just like she has every year on his birthday. Ah, the tension continues even after death . . .)
In honor of Kevin, I am posting one of his poems, "A Dream of the Snow." For many months after his death six years ago, my mother had this as her voice mail greeting. She got a lot of hang-ups.
A Dream of the Snow
From Knife
Gift by
Kevin Sheehan
For a long time I hid
while my body grew,
watched while it learned
a hard way to speak
till the clothes that it wore
no longer fit me
and I could not understand
a word of its speech.
For a long time I slept
while my body dreamed,
cried when it married, moved
away. Now I dream alone
in the room where we played.
Not of the fields, but the falling,
not of the cold, but the coming down,
my body is a dream of the snow.
First time in weeks ...
The K story is changing. All of the sudden, there I am, with opinions and experiences and a viewpoint. K's arrival wasn't the first thing to ever happen to us. He stepped into a context, into a scene that needs to be set. And for this, I have to include my mother's second husband and the quirks of our great triumvirate. Without getting into it too much.
What is lost -- a tight, arid focus -- is worth losing. It's funnier, too. And maybe it's really about me anyway, right?
Making it personal
Yesterday, I read through what I've completed of my brick house. I ended up feeling as though I had swallowed a brick (and I now wonder how far I can take this analogy). It is dense stuff, well-crafted paragraphs that describe them, but as a story are somewhat monotonous. It lacks life. My mother is right -- this is about my experience, is my attempt to exculpate them, and to get over the past. So I have to jump back into the story, become the third character.
I also have to add some real life. That's difficult. The fights, well, they kind of blend together in my mind, though there are some very memorable ones. The conversations -- most of them are gone, too. But the past can be conjured, and sometimes impressions are better than facts.
The hospital and hospice: they are still fresh. I'm beginning to wonder how much of my story will be that, the time when I could be there so unconditionally, providing support, showing that I was a good person. That wasn't my intention, to focus on that time. But it was the beginning of forgiveness and understanding.
Enough navel-gazing for tonight.





