In graduate school, I wrote a short story about a old man with colitis. The only reason why was my professor challenged me to stop writing about love. She found my work cliché. (Though she was the same woman who wore a t-shirt that read, “Would you like fries with that?” to my Master’s defense, as cliché a joke about English degrees as there is.) But I didn’t love ugly truths then, so of course the story was about love, about an old man who rejected love because he couldn’t control his bowels. But I did give the man a dog, because otherwise he’d have had no one to commune with. Dogs think nothing of shit. In fact they seem to have an appreciation for all the meaning to be found in a pile dropped on the curbside. There is a lot of who’s, why’s and when’s to be learned from what is left behind. I thought I was edgy when I wrote about shit, but now that I know how it represents the very mundanity of life, not the extreme, it seems ridiculous to bring elimination to the page. And that’s the irony, certainly. I have a husband with blood cancer; chemo and a stem cell transplant aren’t terribly kind to his insides. I have a disabled son who is afraid of the toilet at age 10. So here is what I wonder: Is it my responsibility now to write here about loose stools and “BMs” and colonoscopies and Miralax and pull-ups in size Large and the guilt I feel when my friend takes my dog for a walk and he’s eaten something that doesn’t agree with him and they must wipe up the liquidy mess from the neighborhood lawns or park sidewalks? Will there be a reader who says, yes, my life is shitty too, in a similar way that you write it? Maybe. Now I think I wrote that story about the old man all wrong. Ridiculously, love is revealed when we agree to clean up after another living being’s literal or figurative shit, especially when you think you cannot bear it even one more time. Even when you gag and wonder what your life has come to, and how maybe you wanted a more elevated life, not one that reminds you, without consideration of your own desires, of the most base element of humanity besides death. Maybe Rosa, the old man’s love interest, had once been a nurse or a doctor, a mother, a veterinarian, and she wouldn’t have batted one of her false eyelashes at his trouble. But no, I didn’t even given her the chance to say yes to a man neurotic about his own shit. Instead, I’d wanted him lonely, alone except for his beagle. So he (or I?) couldn’t even ask someone to love him. Because I couldn’t imagine someone loving him, not if they had to discuss shit. But that is an obvious difference between true life and fiction: we are not asked about what we are willing to deal with, or what kind of life we will accept. We are presented with a thoroughly messy life, and the only choice we have is to keep picking up after ourselves and the ones we love with a fierce determination and a very short memory.
To see him lying there, bloated and nearly naked due to feverishness, tubes like exterior veins protruding out of his neck in a knot of grotesque jewelry, a patch of dark blood–had it gushed?–spread out and dried on his chest, a thrum thrust through my torso like when a plane breaks the sound barrier. He turned to me when I arrived, when I said, “Wow,” careful to keep a certain amount of lightness in my voice, like when you slip on the ice and fall hard but assure everyone concerned that you’re just fine, and he said, “I’m sorry, honey.”
I think at that point he probably knew it was bad since the machine those tubes attached him to was removing his blood, cleaning it, and returning it, in an effort to quickly reduce the number of white blood cells which had been replicating unchecked in his blood. A science teacher, a teacher of biology and chemistry, certainly he knew. But he is also a pragmatist with a healthy shot of optimism. In other words, he’ll face what he has to face, but he won’t think the worst until it’s absolutely proven to be happening. Then it’s a matter of science; luck hasn’t much to do with it.
The women from the blood center who worked the machine, who showed me the bags of his blood, both red and white, mentioned chemo to one another. I didn’t let on that I’d heard, but soon I went out into the hallway to find the hematologist and suggested they make an effort to talk to him about the chemo since he had not been told directly that he had anything that necessitated such treatment. I said all this without so much as a crack in my voice. She was unwilling to commit, to declare it was cancer, to say more than that they suspected a form of leukemia, because the lab results weren’t in yet. But she promised to have the resident stop by and explain what they’d learned as soon as she could track him down.
I went to his bedside, and asked if they’d told him they were going to start chemo, that it was likely leukemia. He said no. He stared up at the ceiling. Tears pooled in his eyes. And then they were gone. I told his parents when they arrived–they drove from Minnesota on a feeling that things were not all they appeared to be, parents who had already lost a son to cancer–, that it was likely leukemia. His mother shook her head, said it might not be, that the tests might reveal a less devastating diagnosis, but I was sure, just as I’d known there was something wrong with our son’s development before anyone else believed it could be true.
The resident explained to us what Acute Myeloid Leukemia was. He used simple pictures on a white board to illustrate what had happened in Mark’s body before we could know it was happening. My memory of these moments is solid–I see the room, his rough sketches, and hear the resident’s voice, a reassuring Indian sing-song, clearly–but I’ve turned the information around in my head so many times, trying to apply some sort of logic to the incredible, that I’m afraid each time I speak that I’m repeating some laughable interpretation of the facts like a game of telephone.
As I understand it, a chromosome went wrong and one rogue cell started birthing premature white blood cells which then replicated more premature white blood cells, ad infinitum, driving the platelets and red blood cells out of the neighborhood that was his bone marrow. And because immature cells can’t do the work that mature blood cells can, his immune system was an inadequate barrier against any kind of illness. The cause is a gene mutation, a mutinous enzyme, a scratch on the record, that caused his cellular production to go awry. If left untreated, the immature white blood cells would proliferate until he is dead. Because this new chromosomal error is uneditable, they must clean out his bone marrow and replace it with another person’s.
Some leukemia survivors regard their bone marrow transplant to be a rebirth. They take pictures of themselves celebrating their new birthday. Some report changes in their bodies–gluten intolerance, overly-sensitive skin, a lingering fatigue. Some make vague references to not feeling quite themselves. But I can’t help but fear, in a kind of wondrous disbelief that the best science fiction engenders, that the man I married, whom I have lived with for the past 20 years, will not, at the end of this odyssey, be the same. Is this the ultimate test of nature versus nurture? Creationism versus evolution?
Our son’s neurological disorder is undiagnosed. The closest we get is to say he has a seizure disorder, but there is no answer to the question: why him? There is no cause determined, no prognosis predicted. The geneticists and the neurologists and the epileptologists and the other specialists have looked at his test results, the scans of his brain, the vials of blood and spinal fluid, the space between his eyes, the shape of his fingernails, and found nothing to explain why he is as delayed as he is. Is he–are we?—just unlucky? Perhaps the world would be a friendlier place for him and for me if we had an explanation for the idiopathic symptoms that plague his development and his safety. Maybe we could put the questions to rest–Is it something I did?–but then what good has that done us in Mark’s case? Leukemia is something that makes sense to doctors; it is an affliction that has a rote protocol. But it doesn’t mean we don’t ask the same questions: why him? why us? what happened?
Life strikes. Bang. Mark’s cancer was like a car crash without the car. One day he was home, then the next he was beginning a month in the hospital, the start of a six month process toward getting cured, and maybe a two year process to become himself again. And yet, I took it in stride. Maybe it was shock. Maybe it was the Zoloft I’d been taking for a few years since my anxiety over my son’s health and special needs had turned into constant high wire walking. Maybe it was our son’s recent 3-week hospitalization over the previous Christmas and New Years that had prepared me for another long haul, another effort in compartmentalization, the practice of segmenting my strife from my life.
Because that’s what you do when you abruptly–is there any other way?–learn that your husband has cancer and treatment begins even before either of you has time to prepare. There was no choosing, no strategy, no warning that I would suddenly become a single parent of our special needs child, the primary money-earner, as well as the grateful, if begrudging, hostess to the constant stream of family members and friends and child caregivers and dog walkers and house cleaners who offered their assistance. Every one of the 25 days he was in the hospital, I kept it together. The gun had gone off, the race had begun, the ground moved beneath us, and we had no choice but to run, a marathon and a sprint both. Exertion and fear of stopping forward movement drove every decision, every action.
Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the lightswitch makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the answers are so minor compared to the wonders of the world, the wonders of blood, the white and the red. One day, long before we knew Mark had cancer, something happened and suddenly? He had cancer.
And maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still there? How much of me is memory? And, maybe I wonder, how many times can a person be recreated before the pressure becomes smothering and the light just dies out.
We have dropped down the rabbit hole
once again. Reality distorts
and white rabbits cavort
with wristwatches big as heads.
When Noah seizes, we watch
our son’s rosebud lips turn blue,
no lingering cat’s smile here,
feet curl, petal-like paws.
Is there an apt metaphor
For watching a child
unable to draw breath, chew
his cheeks raw, leak a trail
of bubbled spit on the pillow? Where
has he gone? I hope a field of flowers
greets him, and a song
he knows whispers in his ear.
In my dream, there
is the peaceful lake, an idyllic
spot of pastoral comfort. We lie
back in repose, dressed in our best
Pale colonial dress, a scene
From a Forster novel. A man
languidly tosses a stone
into the lake and the stone
Drops out of sight, but the ripples
remain, floating outward
like a linen flicked and draped
over tables set for that night’s party.
A motor car guns through
The perfect silence, an ominous
Sign of a future bedecked
In soot and interrupted by
discordant noise. I wake.
On what false hope do I hang my dream
On those days when seizing
Is just as foreign as a game
Of cricket on the lawn, a fantasy
Of famed authors with slicked-back hair
and a lazy cigarette between lips?
Today, he is pale, blue half moons
Beneath his large round eyes.
Eyes so big, I think they must see
through the world. When he seizes,
his head thrown back, eyes flick up,
perhaps trying to solve the mystery
of his brain, get a look
under the hood. His mouth works
like it does when he is settling
down for sleep, holding
His blanket against his lips,
just as it did when that mouth
fed from me in those most contented
First months of motherhood. Perhaps
he is at peace during a seizure
despite the mad Rubik’s cube sorting
his brain does in reorganization.
I would like to believe.
We need no holes to escape
down, no fantasies of a quiet
foreign countryside. Just the comfort
of the mundane will do
nicely. I find the absence
Of dreams my only Kubla Khan.
My husband is calling my name. Fear
craters into my stomach and I startle
in response. I once wished he’d say my name
more often. He called me “Beautiful,”
but my name would prove he knew me,
that I was known. Now I hear my name
in a shout and I know our son is seizing
and I should come. We stand witness together,
watch his brain and body strain. I wish I never
had to hear him say my name again.
If I were a man, maybe I’d be the kind of man who hits women, who snaps and shakes a baby, who drags his child by the arm across a parking lot. If I were a man, maybe I would have left my son by now. Dead-beat dad. No ties to bind. No evidence to cover up. No silvery stretched skin bearing the proof. Maybe I’d be the kind of man who leaves because staying means feeling, and feeling means staying.
My emotions come on too fast and strong. They gather in my chest like an itch. I feel a pillow over my face. A cover over my coffin. I feel the tingle of adrenaline in my hands and fingertips. I feel a punch in my fists. I want to lash out, just to slow everything down, quiet it all, perhaps shock myself into silence. I feel an urge in my thighs to stretch, expand, put miles between me and what I might have done if I’d stayed.
My love for Noah is combustible. Powder and strike. The intensity of my love threatens to stoke my gasoline-soaked heart into wild flames, and I want to beat it to the punch, fight and flight. But it’s no good. I am a woman. And I am his mother. Presence or absence could land the final blow, scrape against flint, phosphorus and sulfur smoke. I have no choice but to wrap my arms tightly around him, prevent the distance that allows for a leak of oxygen to snake in and fan my fears, and, against my better judgment, I stay.
Most people claim that time passes too swiftly. Parents in particular. There isn’t a day that goes by that I don’t hear someone exclaim—at a birthday party, at the worrying of a loose tooth, at the advent of kindergarten, in celebration of a baby’s first steps—”They grow up so fast!” No, they don’t. Not always. When parenting a special needs child, one with delays in development, the reverse is true. Time passes slowly. Sure there are still the loose teeth, the outgrown corduroys, the first days of school. The body grows, and time passes, but we are parenting in adagio. There is still music playing but at a pace significantly slower and often less dynamic than the usual exciting, staccato rhythms of life with children. Sometimes, in this special kind of life, time plays out like a dirge. Particularly during the frequent illnesses you have no control over, or during the IEP [individualized education plan] meetings where for several hours a number of well-meaning people tell you, unrelentingly, just how behind your child is, or during the tantrums so inappropriate that it is anything you can do to make the seconds speed by before you can leave Target. Superficial, yet critical: I have been watching the same Elmo’s World episodes for nearly 10 years. I can no longer understand parents who bemoan the passage of time; I crave it. And yet, I also fear it because with each year, my son’s age splits like a widening gulf between the years and his capabilities. My 10 year old is a 3 year old; someday I hope my 25 year old will be my 10 year old.
The hard-won gift of this glacial pace is, however, in those moments when your child, no matter how delayed, shows the mastering of a new skill. Noah did not walk until he was 3 years old. And now, over a year later, I watch him with eyes filled with awe as he runs awkwardly through the grass at our neighborhood park. He did that! It is something he did, that he once hadn’t done! And in those moments, it doesn’t matter in the least that he looks nothing like the other children running around him, that his gait is herky-jerky and he is expressing a level of glee that have most of the kids looking at him like he’s just broken their favorite toy. It doesn’t matter the tears shed or the doctors’ appointments booked or the therapy sessions tolerated. In other words, the time that is past no longer matters. No. Those moments linger like a singular note held after a bold crescendo that is so beautiful, and simple, and clear that it is physically painful the longer it is held, and yet, you can only savor it as long as it lasts.
(2008 – Noah is three years old.)
Before he was born, each moment
simmered down so simply
to: happy, sad. Now I am neither. Never
one nor the other. A haze
has settled, an eclipse cloaks
the light, and I rummage, blind,
through piles of emotions, sinkholes
of scraps, all notes on a broken heart,
searching for clues, an X on a map, a route, a way out.
The world turned grey for us. No
bright colors any more for us,
our lives whittled down with
Unmet expectations shaved off in wormlike
curls. Lost dreams drop
off behind us like so much
debris in ditches, piles of discard and disuse.
Now my back bends.
My belly scrapes the ground.
I am loaded like a beast
of burden. My weight is weighted with wants
I can no longer put to work
in the hopes of shaping a life
for myself, for him, that is measured
by capacity and not by limits.
And I am tired, tired
of sorting feelings
into orderly bins: hope love disappointment.
Yet, one day, long
after he should, he points
To an apple, red and round
on a white page. Recognition. Cognition.
And there. Oh there it is.
Like a mouse burrowing
beneath fall leaves, like a faint voice
whispering from beneath rubble, hope stirs.
And like a pale green sprout, slow
in its uncoiling, Noah unfolds.
And suddenly I believe again.
Some day he will learn
his letters, his numbers, his name.
And on those new-colt legs, he will
run with friends, run from me,
from my arms that have carried him far too long.
He will run, fly, and I will
be the first mother to cheer, to say, to plead:
Go, my son, grow up too fast.
Like they all said you would. Go.