Tag: death

Lamentations at the Tomb

~ sehaldorson ~ Leave a comment

The smell for one thing.
Open the door and the odor
of mold hits you square
in the face. Say you
forgot something. Find sanctuary
in your car, your oh-so-clean
car, even the lingering smell
of McDonald’s lunch a relief.
(It was a long drive
to Dad’s. Only one reason
you rarely made it, traveling along
I-90 through LaCrosse, a glimpse
of the Mississippi and glacial-less
bluffs beautiful, too brief.)

The smell is the basement’s
annual spring flooding,
destroyed drywall downstairs. Descend
the wooden stairway
of the rectangle ranch
you grew up in. The extent! Weird
enough what he had saved. A baby
carriage, Lite Brite,
one of a pair of Rock ‘em Sock ‘em Robots,
school papers and child art, wilted with wet,
stacks of books, pages dried together
like shipwreck survivors
clinging to one another,
a Mexican tooled-leather purse, an old one-eyed bear, your hope
chest. All eroded
by the creeped-in water, not just
this year, but years. Saved
yet not salvaged.

Bugs, but you see those. Sills pilled
with Japanese beetles that look
like harmless ladybugs, but have their own
particular stench if you touch. Daddy
longlegs weaved homes into corners,
fly corpses suspended. The black
and red armor of boxelder bugs
in every corner.
Rodents too. Holes chewed
into walls. Insulation seeps out
like dirty cotton candy. If you are brave
enough to look for a water glass, you will see evidence.
Of mice creeping in and out of cupboards,
over mismatched dishes, Tupperware,
weaving amid yellowing boxes of
Morton’s salt, Hamburger Helper,
and amber bottles of pills
long since emptied.

Also you see your vain
efforts to help. Not enough
in the end, or maybe since
the beginning. You hand-wrote recipes
and taped them to those cabinet doors,
yellow now with age.
A soft blanket
you gifted at Christmas, crusted
with spilled food and obscured by 
shed dog hair, spread
over a sofa. The nice television is still nice, but
the pale blue recliner you bought with your brother
has gone limp with overuse. Strangely
you are reassured
that the casket you both chose
is quite lovely, pale blue satin to match
his eyes, though his eyes,
you both agreed,
were donated fast.

(There was nothing
you could do. There was everything
you could have done. But anger, well,
its seeps and rots too.)

Here there is no resurrection
long in coming. Roll the stone
away, and there is only a failed shrine
to keep your mother’s memory alive, what she left
before
she died. He shut his eyes
to decay in favor of dreams of days
when her collection
of tea cups, washed to gleaming,
posed on the polished table, debutantes awaiting
the Ladies’ Aid. Maybe he remembers
how he would cross the kitchen
in farm boots of hard leather, and steal
one more cookie, maybe the same kind
his mother had made
him when he was a young boy
coming in
from the fields.

(You will never know.
You will never stop knowing.)

Cosmogony

~ sehaldorson ~ 2 Comments

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.

The Silence of the Sound

~ sehaldorson ~ Leave a comment

It is dinnertime and Mark, Noah, and I have just arrived home from the grocery store. While Mark empties the grocery bags and I prepare the chicken, Noah is occupying himself by opening and closing the storage drawer beneath the oven. When we hear a thump, we both look down and he is lying prone on his back like a turtle flipped on its shell. This happens occasionally. When he just loses control of himself and falls backward. It’s the hypotonia, we are sure. He still isn’t always good at sitting. But he usually cries or laughs, depending on how hard he bumped his head. This time, he is just lying there, stiff, and his eyes are rolled up half under his lids. It is a seizure again, out of nowhere, here when we were doing normal so well.

Mark picks him up in his arms and moves him into the living room. It seems wrong somehow to leave him on the dirty kitchen linoleum to seize. I make a note of the time (6:39) and grab the Diastat box out of the kitchen cupboard. I hear Mark say, “He is burning up!” This is a good sign. Really. It is another fever-induced fever. Not one that is random. If it was random, that would be a different hell. Would carry different meaning. Like getting a life sentence, if that is what epilepsy is. (We would later learn we would not escape that grim fate.)

This is getting familiar if never comfortable. How could seeing your baby, life itself sparking in his bright eyes and exploring hands and thrilled smile of discovery, suddenly vacant of self. Having watched too many graphic recreations of bodily dysfunction on CSI, I imagine the electric currents in his brain zinging this way and that as the fever rises. His brain aflame with electricity. (It isn’t until many years later that I begin to understand that a seizure isn’t a storm, but the eye of the storm, the calm, the silence of the sound, of the fury.) Where does he go during these seizures? Is it like sleep? Is it like death? Is it like peace?

Noah is on the living room rug, his head tipped to the right side as it does, a sign perhaps of where the storm brews in his brain. His limbs jerk and his throat throbs with work and foam collects on his lips. Mark sings. I kneel down beside Noah and kiss his cheek. Wipe his mouth. Watch to make sure he is still breathing. This time, his lips are not turning blue.

Mark strips him to try to tame the fever. I run and get a cool washcloth. I say, “We should just give him the Diastat. It’s been 4 minutes.” There is no reaction from Noah as we lay the cloth across his bare and steamy stomach. There is no reaction when I sing to him his favorite song, or maybe it is my favorite song, the Cole Porter one I sang to him at the hospital when I couldn’t sleep in the wee hours after his birth. “Sun-tanned, Windblown, Honey-Mooners at last alone, Feeling, Fair Above Par, Oh How Lucky We Are. I Give to You, and You Give to Me, True Love, True Love. And On and On it will always Be, Love Forever True. ‘Cause You and I have a Guardian Angel…” We don’t know what we are doing. We know what we are doing because we are doing what we have to. Mark readies the Diastat plunger and administers it via Noah’s rectum. I keep singing and we wait.

We call it the 5 and 5 drill. It’s how we explain the seizure procedure to anyone who will spend time alone with Noah. If Noah has a seizure–oh, you’ll know, we say. He’ll go limp, but also be rigid. His eyes will flutter and probably roll up–, it’s okay to let him seize–in a safe place, of course–for 5 minutes and see if he comes out of it. (I know, how can that possibly be possible? Why is it ever okay to let a seizure run its course?) If he is still seizing after 5 minutes, administer the Diastat–the directions are right here in the box. Please read through them when we leave.–and wait. If he is still seizing 5 minutes later, use another dose of Diastat and call 911. There is a concern with oxygen. There is a concern of brain damage.

There is always a concern of brain damage. We must be alert to possible seizures every day, every hour. He will go months without one, and then suddenly, thump. Sometimes there are signs, in retrospect. The day before? A long nap. An anomalous fatigue when trying something new like standing. This morning? A low-grade fever of 99.5. But then he acted well. He climbed under and around the dining room chairs like they are his own obstacle course. He slid and swung at the park. Enjoyed a trip to the grocery store where we bought wine (joking that Noah had driven us to drink!) and baskets of colorful fall mums. Then, thump. Is the medication not working? Why? Why has this happened today?

As the years collect we will learn there are rarely signs, only our desire for signs, like the common physical salve: Everything happens for a reason. The reason, of course, being applied after the fact to pretend we have some control over chaos. We have no control over the chaos Noah’s disrupted brain has flung into our lives.

Noah stirs. Mewls. Curls up on his side. Eyes closed. His body trembles. His limbs twitch. We think he is back with us. The medicine has broken the seizure’s concentration, but now he is burning up. But now he is burning up, and now he is shivering. We take him upstairs to the bedroom and lay him on the bed, cover his thin (oh, how concave his stomach looks, how weak his limbs) body with a light blanket. Mark is hesitant, but I remind him how terrible it is to have a fever and be cold at the same time. He radiates heat. I get the thermometer. 102. We administer rectal Ibuprofen. Hold his hand. Watch to make sure he isn’t back in to the seizure again (that has only happened once before). He occasionally yawns and squeezes through small cries. You can feel the heat radiating off his body over an inch away. I scan his forehead. 103. I log onto the internet to double-check when to sound an alarm. It is 103. I rush to get the cell phone to be ready to call our clinic’s triage nurse. We lay cool cloths on his skin. Nothing works.

Mark takes him into the shower, puts him in the blow-up duck tub that Noah used as a baby, but it is too soon. Noah is miserable. Cold. In the past, the water has revived him. This time, he is too sick. We dry him off, apologize, lay him back on the bed and take his temp again. 102.5. We decide to hold off calling the nurse; the ibuprofen is working? Next temp, 101.5. Noah rolls onto his tummy, crosses his feet, tucks his arms and knees under him, and sticks his butt up in the air. His favorite sleeping position; our little turtle is right side down now. His breathing accelerates a little, worries us, but then evens out. The tension is out of the room. We lay on either side of Noah, gazing at him, kissing him. In awe of him, like we were in those first days of his birth, but now for reasons less joyful. If we were once amazed by the miracle of him, we are now cowed by the mystery of him.

I cry a little, then. I’ve learned that tears don’t changed anything, but this time I cry for Noah. I cry because it is so sad that life is already not fair to him. All children, I think, should be born with a clean slate. With health. And unlimited potential. But that isn’t the case. Noah’s potential has been limited. By seizures. By low muscle tone. By crossing eyes. By allergies. The limits seem endless. He cannot have ice cream because he is allergic to milk. He is not walking long after other children his age. It isn’t fair to him. He who should have all the opportunity to be happy. And I hope he will be. I hope he will be happy, and we will help him find that happiness no matter what that means.

But I imagine him having a seizure at the playground. On the stairs. I imagine my slight, thin baby as a slight, thin boy, mocked because he can’t play kick ball. I imagine him struggling to talk, or read, or hold a pencil. I imagine him pushed down by a crowd in a hallway. I imagine him middle-aged and alone, sitting at a bus stop, no home, no hope. But, I am learning: these are just imaginings. Strangely, the unexpected otherness of Noah, the expectations of parenting unmet, the dreams of his potential ashed, has also taught me that the paralyzing fears are just as slippery and ephemeral as the hopes. Nothing is real except now.

What is Noah’s potential? When he seizes, all I wish for is having him alive, with me. Each seizure, he is absent, like death is due and will decide whether to stop. Noah’s seizures are whole system and when he becomes still and stiff we drop into a kind of purgatory, powerless to decide if we might ascend. Noah becomes absent of everything but his body, and it would be, it seems, just as easy for him to settle more peacefully into death rather than struggle back to the surface choking life into his lungs like the half-drowned. But more than alive, I want Noah to come back to us as the same Noah who left for those long minutes. No other more damaged version would suffice. I will not pretend I haven’t thought about how much easier my life would be if he were just to fade away.

The ambiguity of my feelings for my child hovers over me like a curse. I am incredibly grateful for the astonishing miracle that is this little beautiful and resilient child. I do not doubt the ferocity of my love for him. But I also fantasize about finding myself in a dark alley, like on the set of some cheap sci-if movie, and coming upon a time machine. I have little doubt I would enter, choose to return back to my motherhood-less life. Selfishly, because I long to do that part of my life over: why didn’t I travel? Why didn’t I go back to school? Why didn’t I write that novel? I wonder if becoming a mother was just a shortcut to purpose in life that had seemed purposeless. But also self-protectively. What of the black fog that shrouds me since we first learned about Noah’s disabilities? People tell me it is normal to mourn the child you dreamed of having, but what about mourning the mother I dreamed of being? When I chose to have a child, I did not know I had also chosen to become harbor to a lifetime of heartbreak.

After an hour nap (I watch over him as Mark makes us dinner—we have learned life must go on), he stirs. Noah is listless, groggy, and can’t seem to close his mouth. I offer him my breast and he is able to take in milk. Mark brings up a bottle of water and Noah drinks more. He makes his talky sounds. We call our dog, Gracie, into the room, a sure excitement getter, and Noah forcefully tries to say “dgogd”. After a minute, he claps, then he gives a smile. All of his best tricks.

We dress him, carry him downstairs, feed him mandarin oranges. He eats and eats. The color is back in his face and he is beautiful. Sure, he is weak and listless the rest of the night, and goes back to sleep by nine, but we think he is okay. Believe that he is okay. We have all survived one more seizure. And suddenly it feels like nothing. Like a close call on the freeway, a car coming fast, a squeal of brakes, then silence. No impact other than the smack of adrenaline, the tingle in your fingers, the beating of your beating heart.