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