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.