I’ve been reading a lot about death lately, death and long hospitalizations and the kind of hope that people with sick children cling to, a stretched kind of hope that comes with chemotherapy and radiation and surgery. When I started writing for National Novel Writing Month, that’s where I was drawn, partly out of some kind of voodoo thinking that writing about it would protect my family and partly out of wanting to work through how someone copes with the loss of a child.

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.

Tags: Kevin, NaNoWriMo, National Novel Writing Month, grief, hospital, ventilator, Critical Care Unit, dying, Death, myelofibrosis

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.

Tags: National Novel Writing Month, NaNoWriMo, grief, Death, A.S. Byatt, Dead Boys (poem)

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.

Tags: The Little House, Echo and the Bunnymen, 80s music, child neglect, family, guilt, grief

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.

Tags: grandmother, Death, ouija boards, ghosts, grief, writing prompt