E.U.P. February 27, 1995 — March 24, 2005.
Above: my nephew and me, a very long time ago.
Cancer; glioblastoma multiform; brain, spinal cord.
About nine months from diagnosis to death.
Survived by his parents and his younger brother, who at the time was the age my daughter is now. Survived also by two grandfathers, two aunts, an uncle, several cousins, and dozens of friends, teachers, coaches, parents of friends and, collateral of the last nine months of his life, a great many doctors and nurses, mostly at Children’s Hospital, Oakland, who came to know and love his spirit, bravery, and generosity.
The world wobbled out of its orbit this time seven years ago. It began to tilt on its axis upon diagnosis, though, the summer before: I still remember exactly where I was when my sister stuttered out the word “tumor” on the phone, remember that night on my couch, sobbing for longer than I ever had in my life, eclipsing all including one night listening to Faure’s Requiem some months after my mother had died.
Glioblastoma multiform is a death sentence, the only variation being in number of months of survival, and that only resting on number of surgeries. Hell and a hard place. I remember sobbing and rocking and choking out only, “No, no, no, no, no, no, no, no,” as my beloved held me, our first child six months in her womb.
There were nine years of boy before this diagnosis, and the limits of his touch are not demarcated by this tragedy. But I have a pact with him to live my life differently as a result of the length of his time here and the extreme difficulty with which he left here. As I have said before on this date, this whole blog is a paean to him (said so in the very first post back in 2005), insofar as it is an extended sign of my attempt to live my life and my parenthood with eyes and heart as wide open as possible, and to grab as many people by the lapels as I can, and urge them to do the same.
Muted backstory about him here (you have to read about half-way through to start to get to it).
I don’t write about him much (find it hard to, though I took a pass at it here a year ago). I have made glancing reference to the emotional fallout of his death, years in its wake, but for the most part, speak more via silence. I have, however, attempted to describe the mark his joie de vivre, coupled with his illness and death, has left on my parenthood. About which, some here, here, and most recently, here.
As ever, for his enduring parting gift of recognition for what I have, so long as I have it, my gratitude to him continues to be oceanic.
“When Death Comes”
by Mary Oliver
from New and Selected Poems
When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measles-pox;
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth
tending as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it is over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.
I don’t want to end up simply having visited this world.