A tale of necessary sadness, in two acts
Act I
Something is going on with
me. I’m sleeping terribly, cry at nothing.
Last night at dinner my son asked for another
Dress Me Monkey story: “What else would Dress
Me Monkey do?” This is our cue to come up
with some fantastical new tale about how the
toy would spend the proceeds from treasure he
never manages to steal. I said the first
thing that came to my mind, that Dress Me
Monkey wishes he could go back in time to the
nights when he ate with his mother and father
and they told Dress Me Human stories. "His
parents are far away now, and Dress Me Monkey
misses those days. He would like to go back
for a meal or two."
The dinner had been a difficult one, with the
kid complaining about his food and telling me
how the refried beans on his homemade nachos
looked like dirt, like something worms would
eat. I'd spent a lot of the day fighting my
initial crabby responses to his normal kid
behavior. I was tired. My past has been
coming back and poking me lately, spilling
out, and meals are one of those difficult
times for me. So I came up with a Dress Me
Monkey story that fit my mood, inappropriate
though the story might have been.
"Why did Dress Me Monkey want to have dinner
with his parents again, like he was a little
monkey?" the boy asked.
“Because everybody wants that,” my husband
said and started to cry. The boy was
concerned and snuggled up close to his dad.
We explained that Daddy was crying partially
because he misses his mother, who has been
dead for twelve years, but that also
sometimes adults miss the past, the sweet
simplicity of the family table. Then it was
my turn to cry, because my childhood
mealtimes were mainly horrible. The emotional
tenor of my those dinners depended on my
mother's mood and the man she was dating. She
had only three boyfriends over the course of
my childhood, but each of them had their own
issues, would make me stand at the table or
wouldn't talk when I was there or would pull
me apart, show my every flaw. When the last
one, Kevin, came along I ended up eating
dinner alone most of the time.
So. I want my family meals to be happy. Full
of love. The food I prepare is part of that
love and I try hard not to force the boy to
eat things he doesn't like, which is why he
eats macaroni and cheese almost every night.
Last night the meal was something he has
eaten before, but it didn't appeal to him and
the whole situation got to me.
I know that his rejection of my food is not a
rejection of me, but sometimes I still have
that visceral reaction, that and "You have no
idea how good you have it, little boy." And I
get angry at myself for thinking such a
thing. He doesn't "need" to know that. He
needs to grow up secure and happy and loved,
without the burdens of my childhood thrust
upon him. But right now the past is spilling
out of me, surprising me with its emotional
abundance. It can be overwhelming.
Last night, as I was getting him to sleep, he
asked about our day. This rundown of our
daily activities is a bedtime ritual.
Sometimes I learn more about what happened at
school or we go deeper an earlier discussion.
When I got to the dinner portion of my
synopsis, I apologized for the weirdness of
it and asked if he had any questions. "Why
did you tell a sad Dress Me Monkey story?"
was the first.
The real answer was because I am sad right
now. I am processing something deep and
fetid, airing out emotions that don’t easily
surface. I’m not sure why it's happening and
while I don’t like the effects – waking up in
the middle of the night or too damn early,
occasionally scaring my child, being cranky
and sleepy all day – I think what I’m going
through is necessary. What I told him was
that when I was little mealtimes weren't
always happy times and I was feeling sad
about it during dinner. And then we moved on
to why Daddy cried at the dinner
table.
Act II
It happened again last
night, the two a.m. alarm clock. I woke up
sad, obsessed with an aborted friendship.
After a good cry -- quiet, intense -- into my
pillow, I went into the boy's room to read
and hopefully return to sleep. (He had
already migrated into our bed.) When sleep
finally snuck up on me, I had a complicated
dream. In it, my husband's family was
visiting (though, in typical dream style, an
old boyfriend of mine showed up, too, looking
very much like a middle-aged Eastern Shore
type, with a baseball cap, greying beard, and
a beer belly). It was a surprise visit. I
hadn't had a chance to clean and I was
ashamed at how the house looked and angry
with my husband for springing them on me.
My dream self went stomping off into the
night. Our oldest cat, Zoe, fifteen years old
now and a sack of bones, dotty, constantly
hungry, followed me. We wandered frenetic
city streets, joined the rush of humanity. In
one square, mimes performed acrobatic feats
and played with fire. The glow of a neon sign
drew me into a murky bar. The next thing I
remember, Zoe and I were walking home. A
rainstorm had blasted through the city and
scrubbed away the people, leaving behind damp
sidewalks and oil-slick puddles that
reflected the shimmer of streetlights. It was
spooky, the kind of emptiness where you
expect to hear an echo of footsteps behind
you. Zoe, frightened by a stray cat, fell
behind.
One minute I could see her, the next she was
gone. I screamed her name over and over
again. I used the dinnertime call:
Zo-Zo-Zo-Zo-Zo. And then I opened my eyes,
totally awake, feeling the responsibility,
feeling the loss.
But at least I was feeling something.
Image: Asher with Nick's
shadow. Zoe has asked not to be photographed
for the blog. She's an old-fashioned sort who
values her privacy, though her name
actually is
Zoe.
She also agreed
that this photo was the best fit for the
post.
Does it seem like my past is always spilling
out? Maybe here. This is different though,
like I'm working through something big. I
sometimes discount the effects of my
childhood and often think I should be over it
by now. But it's not so simple, is
it?
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.
And five days later cold
It started with Maggie May's post on how one
could possibly cope
with losing a child. Or maybe it started
before then, in my first grief at nine
over the death of my grandmother, the
grief that morphed into my obsession with
Ouija boards, seances, and ghosts. Or
possibly it was before even that, sparked
by the hit-and-run death of the
unpredictable feline Sheba, or the demise
of acrobatic Regis, whose neutering
stitches became infected, or the abrupt
disappearance of Hector, my future
ex-stepfather's dog who had to be put to
sleep because of his epileptic fits.
The themes of death and grief and how we cope
with them have been on my mind, simmering
under the surface. I watched Kevin fade away
in puffs of canistered oxygen and piped-in
morphine. I've had my own sad mourning story,
the first line written in the Little House
when I became responsible for someone else's
death, when what was left of my childhood was
stomped into flatness.
So when I just started writing without a plot
in mind for National
Novel Writing Month (or NaNoWriMo), maybe I
shouldn't have been surprised at what was
coming out of my fingertips.
If I say anymore, I might just stop writing.
I seem to be on a roll and I don't want it to
stop. And I can't get A.S. Byatt's poem Dead
Boys out of my head. She wrote it after her
11-year-old son was killed in a car accident.
She had to go on living, because it was her
only real choice.
An
excerpt from Dead Boys by A.S. Byatt
One son is many sons.
A bundle, a putto, a grave
Boy with kind eyes. One blow
Cracks all their bones at once.
Pastes all the gold hair red.
Soft lip and toothless mouth
Drop blood on the breast.
A white-haired crawler on grass
Head like a dandelion-clock
Above daisy faces that come,
Yellow and white and green
Year after year after year
Stops like a toy wound down.
Like a doll dropped in the wet.
I am a cold grey house.
In every room a boy
Gestures and halts and falls
Again and again and again,
A boy with his hamster curled
On his trembling extended palm,
Like a rigid ammonite,
'Is he dead, is he asleep?'
And the boy who leaned his head
On my shoulder in a bus.
He slept so deep, he jerked
And lolled as the bus ground on
Like a puppet, like a sack,
But he was warm that week --
My cheek was damp with his warmth --
And
five days later cold.
Image
from Celestial
Dome.
Living proof at my fingertips
It was one of those
conversations that I'm tired of having, but I
couldn't seem to stop myself.
Mr. Trinkle and I were standing against the
wall at the Fox
Theater in Oakland, this
over-the-top restored venue from the late
1920s, drinking our beers and waiting for
the group Echo
and the Bunnymen to come onstage. We'd
already had a lot of laughs that would be
almost impossible to explain here (for
example, the image of us wearing cucumber
and cabbage outfits, just to find our
moment of glory in the truly ridiculous
[but very cool-sounding] Echo song
Thorn of
Crowns). Without warning my
dead son winnowed his way into the
conversation, which lead to talks of
alternate lives and then my father showed
up, too, unrepentant, demanding the old
song and dance of anger.
My father and stepmother visited us last
month, which was a truly wonderful visit, one
for which I am grateful. As a result of nerve
damage in his back, he is in constant pain
and traveling is very difficult on him, but
they made the trip and we all had a good
time. There was just one ripple in the visit,
one that I tried to ignore, in a discussion
that would have been impossible without the
blog. He found writing to
survive over a year ago and read
through it in its entirety. Eventually he
apologized via email for any pain he had
caused me, which was the extent of our
interaction on the topic. During this most
recent visit he asked "Are we ok?" meaning, I
suppose, "Is everything all right between
us?". Yes, I said, we were ok -- when he read
the blog I felt like he was listening to me.
Did he
feel like we
were ok?
Well, sure, but he wanted me to know that,
despite my accusations to the contrary,
he had
tried. I had no
idea what he was talking about, but his
response was probably to this
post,
where I write about my anger at my parents
for doing nothing when I desperately needed
help: "My mother stopped
parenting; my father never even started. They
deserve my compassion. It's no use getting
angry at those who don't see their own
worth."
It's a heavy
accusation and I stand by it. The truth
hurts. We didn't dig any deeper into that
particular pit, but our discussion bothered
me, still does, and that
was what I was
talking about in the lobby of the Fox
Theater, that and imagining my
never-to-be-24-year-old son, dressed in
skinny tapered pants and an ironic t-shirt,
angry at me for my own form of neglect, of
the fetal variety.
The band started. We hustled to our seats,
suddenly surrounded by the music that was a
part of the soundtrack of my mid-teens and I
started to cry. I sobbed through the first
three songs while Mr. Trinkle patted me
reassuringly, probably feeling bad about the
tickets, which were a birthday present. The
music transported to a bleak time in my life,
when things started really getting bad and I
was indescribably
alone. I felt
the direness of my situation at fifteen and
sixteen, combined with the beauty of my
current life. I am forty years old, married
to a good, supportive man. We have a healthy,
creative, wonderful child. My life is in
enveloped in love and warmth. How did I get
so undeservedly lucky?
Our conversation in the lobby -- the clinical
look at my father, the ghostly appearance of
my son, my guilt over that time of terrible
fear and anger -- began to make sense. No
matter how much work I've done here on
revealing secrets, writing out my pain and
anger, trying to forgive my parents, I can't
take the experience of what happened in the
Little House away. Even thinking about the
music we were about to hear brought me to the
edge of that past, to the isolation and
neglect. And my father's main reaction upon
reading this entire blog, apart from a
generic, though I'm sure heartfelt apology,
was to tell me that he tried. He has never
acknowledged any direct responsibility for
(or curiosity about) that time. I wish his
acknowledgement didn't matter. Maybe someday
it won't.
I've put so much effort into trying to
forgive the unaware that I've forgotten to
pay attention to my own grief. I still carry
around sadness for things lost, for not
mattering enough, for acknowledgment that
will never be. So I cried and cried until Ian
McCulloch started singing about vegetables.
Mr. Trinkle turned to me and raised his
eyebrows. We started to laugh.
I really am lucky.
Echo and the Bunnymen play "Silver" in
Oakland, courtesy of some fellow fan:
Image:
Living proof at my fingertips, or me and
family at Muir Woods, August 2009. Photo by
my mother.
Writing prompt: Its dark and secret heart
Mom-mom,
1934.
My obsession with ghosts started in the sixth
grade, though it had its roots in my
grandmother’s death two years earlier. We
were in the kitchen, putting groceries away
when she suddenly clutched at her throat and
started gasping for air, frantically
motioning to the kitchen chair. I stood
there, confused, scared. Finally, I moved the
cat, and Mom-mom collapsed into the empty
space.
It was up to me to dial 911. We waited 40
minutes for the ambulance to come all the way
from Elkton. She was dead or close to it by
the time it arrived. Congestive heart
failure. In a couple of weeks, my mother, her
boyfriend, and I moved in with my grandfather
and tried to cope with her absence and our
new living situation.
I’m not sure where the
Ouija board came from. Maybe it was a
Christmas present. I started carrying it
around with me, taking it to school, begging
my friends to help me contact my grandmother.
They went along with it and I believed
everything. Mom-mom had a friend named Sam up
there in heaven. Everything was all right,
and she was watching over me.
My mother took the death chair out of the
kitchen, eventually storing it in the attic
space over the garage. I was into sleeping in
tight spaces, under picnic tables, in tiny
tents I set up in the backyard. One night I
convinced my best friend to spend the night
in the attic with the chair. The space was
hot and smelled of cut wood and roofing tar.
I kept staring at the empty chair, waiting
for my grandmother to appear.
Over the years, through neglect and hard
times, I kept on waiting. When, as a
teenager, I moved to the Little House
adjacent to my grandfather’s place and felt
totally alone, I wished for a sign of her
presence, a sign that someone was watching
over me.
Now I know that such hopes are
false.