Category: essay

Being Seen

~ sehaldorson ~ Leave a comment

A Louis Vuitton bag. An iPhone holder in the shape of brass knuckles. Her iPad cover is pink and tan. Stiff beige work boots, the kind that were in style in the 90’s. Her shirt cut off short, the unhemmed edge curling up, a picture of Tupac entreating us to “Trust Nobody” above her flat belly. A black trucker hat pulled low over her curling extensions, white earphone cords dripping down. She has a beautiful smile as she listens in silent appreciation to what streams—maybe YouTube—on her phone. I’m surprised her fingernails are cut short and may or may not have a light pink glaze over them. I expect her to sport intricate designs on the ends of her fingers, maybe leopard print to match the face on her watch.

There is a man in a Packer jersey and long tan pants over Adidas sneakers. It is 90 degrees, humid, and July. He must have gotten dressed in air conditioning. Sunglasses like those worn by Tom Cruise in Risky Business hang from his hand as he waits for his beverage at the coffee bar. There is a self-seriousness to his face that bespeaks business, maybe investments, but also there is a lingering frat-boy insouciance that keeps the other people in the queue from getting too close to him. When he leaves he weaves his way through the people coming in rather than going around them.

My accessories consist of a pair of crutches and a bead of sweat racing from my forehead to my cheek. The woman at the table next to me, a stack of notecards and an egg biscuit in front of her, offers to help me settle in, but only after I’ve settled in to my seat and I can decline her offer graciously. A cute hipster girl brings me my breakfast, and the only woman working at the café who does not wear her youth culture on her sleeve and could rightly be described as a ‘plain Jane’ brings me my latte. I get the hefty black boot that guards my broken foot from further damage settled on the chair across from me. From this vantage point, I can see the entire room.

I marvel at the slim 50-something woman with the tightly curling hair listen intently, with a kind of melting sincerity, to the man in the yellow shirt and khaki pants and lengthy grey-brown hair who sits next to her, his legs crossed at the knee, youthful brown tennis shoe on his dangling foot. A man in dark-framed glasses, grey pants rolled up just below his knees like how my husband used to wear his when we first started dating, catches me looking at him. I turn away rather than smile like I see people do in movies. Why do we feel so guilty looking at one another?

In 1st grade, I wore a full cast on my left leg and walked with crutches for six weeks following knee surgery. In 3rd grade, I wore a similar cast on the same leg after breaking a bone in my lower leg. Soon after, I wore a body cast from the tip of my left toes to around my rib cage, after another surgery on my upper leg and hip, replete with rods and pins to hold the bone together. There were other surgeries as I grew, and I became adept at using those same wooden crutches each time, racing other kids with two functioning legs down the hallways of our school.

But I never got used to the stares, the curiosity I provoked in people as I moved awkwardly through the mall or at a sporting event. I recoiled when that curiosity compelled strangers to ask me what had happened. I found their blatant interest in my misery self-serving and not at all innocent. I preferred not to be noticed. When I arrived at my college campus for the first time, again on crutches and struggling to participate in the freshman orientation activities, I was conflicted with my need to ask for help from these strangers and my desire to go unnoticed. I preferred to be lonely rather than be perceived as needy.

My son, who is none, now draws those same stares. Small children corkscrew themselves to watch as my son walks awkwardly past them, his hand in mine, his staggering gait mimics that of an actor miming drunkenness. Adults sometimes stare too, but are better at hiding it. They glance over at us, once, twice, three times. You can see the wheels turning: isn’t that child too big for a stroller? Isn’t that stroller bigger than most? Is there something about the drop in his chin, his unfocused eyes, the bend in his wrists? And once they realize their suspicions are true, they look away, self-conscious. Sometimes they smile. Sometimes that smile is warm.

In this cafe, there is the constant sound of coffee roasters spinning the beans, like sitting next to a waterfall and its constant rushing. The sound drowns out the specifics of any conversation, but the collection of voices blends into a drone in my ears. There is a surprising sense of privacy to this coffee shop—each table or booth an island from the rest–despite the activity and the nearly full number of chairs. As I maneuver my way through the tables to get a glass of water, my metal crutches click and creak, lead the way, but to my surprise hardly anyone notices. One man slides his chair closer to his table to give me more room. A woman at the condiment counter asks, “Don’t you just love your boot? I love mine. I still have it for any time I turn my ankle.” I want to say no, but I just smile, lips closed. I’ve never been good with hollow agreement. When I leave, backpack with laptop slung over my back, a man vacates his spot in the order line to hold the door for me as I leave, asks if I can manage. I say I can, this time with honest gratitude because the hot sun of a summer day awaits me and I am already tired at ten in the morning.

It has been over twenty years since I was last on crutches. It’s harder now. I’m heavier. I’m older. After five days, the palms of my hands hurt so much I dread needing to move anywhere. I expect to have highly defined deltoids by the end of these six weeks. Now, I find the “What happened?” not only tolerable but kind. My boot a badge of courage that people can plainly see, something that labels me “soldier” rather than “victim.” I have to work harder to do the kinds of ordinary things that the people around me can do without effort or thought. I sense a kind of respect emanating from them. Why could I not sense that same admiration when I was a child? Why did I feel apologetic and ‘other’ rather than proud and singular?

I might never know the answer to that most important question of my childhood: why was I not able to accept my individuality as a person as not only inevitable, but to be lauded? Why did I hide rather than shine? How is it that I remained unaware of my near-celebrity; I, like the biggest movie stars, couldn’t hide from being seen? Now, I suppose being hobbled and on crutches at forty offers me a chance to re-label myself, a new measuring stick with which to mark my growth. Instead of hiding, I free myself by being seen. Perhaps I can teach my son to feel included by the stares of strangers, rather than excluded? The idiosyncrasies of character, worn on the outside for all to see—from brass knuckle phone cases to achingly hip sunglasses to a big ugly supportive boot to an obvious, intractable disability— are what imprints our existence upon the world.

The First and Only

~ sehaldorson ~ Leave a comment

(This essay appeared in the Death Blues Ensemble album here.)

The first and only poetry prize I ever won was for a love poem. Written to my older cousin, Kevin, the youngest of four siblings on my mother’s side. It was a radio contest and the winners were announced one morning on the local AM station. I can’t remember if my poem was read over the air. Regardless, I had won my age group, and my mother was over the moon. 

In our home, the radio was a constant, especially in the mornings. Amid the local news and weather, we occasionally heard songs such as Dancing Queen, or something by Gordon Lightfoot. We always listened to Paul Harvey later in the day. After my father left for work at Mower County Soil & Water Conservation, having heard the day’s grain prices, my mother settled down with a second pot of coffee and listened to “Party Line,” a call-in show that was not only emblematic of the social fabric of our community, but helped my mother feel connected because we lived so far from town. She had lived her whole life in small cities, in churches, in schools, and being alone with herself seemed to drain her dry. My poem put me in esteemed company, if only for a very few minutes. 

I don’t remember what my poem said or why I said it. In my mind now, I see it written in crayon on otherwise blank notepaper, hearts drawn near the top of the page, but I doubt I was that young, and I doubt my mother would have allowed me to submit it as such. Perhaps she even rewrote it on lined paper with her precise schoolteacher handwriting before we walked the envelope down our long driveway and tucked it into the mailbox, misshapen from too many scrapes with the road grader, for pickup. 

Because she died when I was twelve, I cannot ask her about these things, things that I suspect are fiction, but for which I have no more reasonable memory. No doubt I extolled my cousin’s virtues in the poem, in schoolgirl terms, though I actually knew him very little since he was at least 10 years older than me and living in Minneapolis, a veritable Oz two hours north of our farm, which instantly escalated him to star status. 

Kevin had a job, and money, or he must have, because he would show up late for Christmas gatherings every year with some expensive and hastily-bought gift that, instead of offending us with its obvious lack of planning, thrilled us because we rarely had a lot of money spent on our presents. (My favorite was the Simon electronic memory game, even if I did have to share it with my brother.) We came to expect those gifts, so when he stopped attending the annual Christmas get-togethers because he was spending time with his girlfriend, our Christmases lost the sense of surprise and indulgence, even romance, he brought with him.

It could be that the poetry contest was the first time I believed I could be a writer, or maybe I never thought I couldn’t be one. My mother had been a 1st grade teacher before moving to the country to marry my father, so reading and language and storytelling was something I’d taken to early, not because it was genetic (we were adopted), but because the house was filled with books for young children, and, also, her expectations. 

Most of her old school books were lined up on built-in shelves in the unfinished basement, but she had a small set of bookends on her dresser in my parent’s room that held just a few treasured volumes. Most were religious, and I particularly remember something by Anne Morrow Lindbergh, but tucked between two hardcovers was a hand-bound book of poetry, with very few pages, handwritten, and illustrated in pencil. Even now, I can nearly feel the silky twist of rope that threaded through the pages because I stroked it with my thumb whenever she would let me investigate her things, usually on rainy days. 

I can’t remember what her poems were like, or whether they were any good, or if the book was anything more than the result of a school project she’d had to complete many years before, but what I did know is that they were written by my mother. My mother had a book of poetry. A whole book! And it was evident to me then that if something was in a book, no matter the size, it was valuable. And it was precious, not just because she kept it in a place of some honor, but also because it was tidy, and deliberate, and somehow alive with a person’s history. 

Years after my mother died, my father got remarried and anything that my mother had owned of value, antiques collected by a family of collectors, was sold. The profit was used by my new stepmother redecorate the house, erase the lingering presence of my mother, reverse the decay that had started to eat at its edges. Anything that wouldn’t bring in money, like that handwritten book of poetry, was moved down to that partially renovated, but still prone-to-flooding basement. Not carefully placed on shelves, but piled in boxes, one on top of the other like a small city of remembrances. I had no interest in rescuing the objects of my childhood because I was about to leave for college. Well practiced at packing my own memories into boxes labeled simply “Better Times” and storing them in some dark corner of my mind, I had little affection for what I would leave behind. 

Their marriage lasted less than a year; the renovations had not been enough to make two people unfit for each other stay together. My mother’s things remained in the basement as water seeped in each spring and mold grew up the new drywall, my father living alone upstairs, maybe believing the memories stored in the basement would be enough to hold the house, and himself, up.

Our basement had always frightened me as a child, its many rooms hiding spots for spiders and mice, and any other kinds of menace I could imagine. When I was very young, the basement had been used to clean, weigh, and carton the eggs our chickens produced, and the process left behind bits of feather and residue from cracked and leaking eggs long after the chickens were gone.  

When our washing machine broke down and we couldn’t afford to replace it, my mother rolled out a decades-old monster of a machine that had lurked unused under the stairs for years. It washed our clothes in its round gut, but didn’t remove the water that a spin cycle would. She had to wring each piece dry through a press that resembled a large pasta maker. It was hard work, and we didn’t yet know about my mother’s glitchy heart. Later, even after a new automatic washer made the laundry easier, she never descended the stairs to the basement without a small brown bottle of nitroglycerin pills tucked into a pocket.

After she died and the laundry became my responsibility, I’d go into the basement as infrequently and as briefly as possible, dash up the stairs when I was done, especially after seeing my first horror movie, “The Evil Dead.” The basement stairs were free-standing and the large space underneath, with built-in shelves and cupboards, had served as a pantry. There were still jars of my mother’s canned goods—peeled peaches and bulbous tomatoes, yellowed cucumber pickles in pale green brine growing a grotesque virus of garlic and dill—stored amid opened paint cans and retired pots and pans, like bloated body parts in jars in a mad scientist’s lab. 

When my father died five years ago, having spent the majority of 22 years alone in the home he and my mother had had built during the first year of their marriage, my husband and I were tasked with emptying out the house for sale, and we confronted what turned out to be the actual horrors of the basement. After years of flooding, the resulting mold, and my father’s growing poverty and passivity, most everything abandoned in the back rooms of the basement had disintegrated, forming a two-foot undulate layer of debris that had to be shoveled and scraped off the floor. 

We picked through the mess, searching for survivors. An old stuffed bear looked to be in good shape, but, unearthed, it was missing half its face, like some storybook phantom, eaten away by mice looking for nesting material. Even the shelved books were ruined, musty, their pages reduced to dust at the corners or stuck together with damp. I now have four plastic tubs stacked in my own basement that hold a spare number of rescued items moved from that house to mine.

I don’t know what happened to my mother’s poetry book, the one I imagine she had kept on her dresser to remind herself of who she had once been. I’d like to have it now, so I too could have a tangible representation of the faded but inextinguishable passion for words that seemed always to burn within her. Perhaps that’s why she was so thrilled by my poem, that winning poem, despite the obviously questionable object of my affection. Maybe in that poem, she could see herself in me. And she was relieved to know that despite my adoption, I was her daughter, that she had successfully lit a flame in me to write something just as tidy, deliberate, and alive. I wish now that I had written that love poem for her, but then, maybe, it was. 

The Patience for Bread

~ sehaldorson ~ Leave a comment

A tan froth floats along the surface as I stir yeast and sugar into warm water. According to Google, the yeast is alive, ready to do the heavy lifting on this bread, if it bubbles when added to the water. There doesn’t seem to be much life here. No bubbles, just foam the color of the organic strained pears I shoveled into Noah’s mouth when he was a baby. That brown goop collected in the corners of his mouth and ran down his chin as he refused the sweet mush, pushed it back out with his tongue. I read the recipe again: dissolve yeast and sugar in water between 100 and 120 degrees. Maybe the water wasn’t warm enough to activate the yeast.

I dig through the drawer that holds all the various kitchen utensils I’ve collected over the years when I had unlimited time to cook high-maintenance meals for just my husband and me. Rummaging past multi-sized whisks and vegetable peelers, a citrus juicer, a melon baller, I find only a meat thermometer, grab it with shrug, and slide it into the scummy liquid. But then I see that the little numbers on the face start at 130 degrees, not the 100 I am looking for. I squint; I mark with a fingernail where the numbers would be if they were printed there; I wait as the indicator slowly rises up the dial.

Already this exercise in bread making seems entirely too difficult, not at all worth this kind of scrutiny of basic ingredients. What if the yeast is not alive? What if the water temp is not hot enough? Wasn’t there a different recipe I had browsed that said to add the yeast directly into the flour? I project my mind into the day and imagine the burden of coming back again and again to the bowl where my bread dough will rest, will rise, where I will poke in fingers, punch the mound of dough until it deflates and wrinkles like the skin of my belly. And I feel the demand of that process lay over my shoulders and I am already exhausted by the commitment.

But today I am testing of my patience. I remind myself of the golden, crunchy crust I enjoyed as a child when my mother made bread. I remind myself of the reliably wonderful smell that will fill the house, regardless of the success of the bread. Today, I am baking bread.

First activate the yeast. Next, add the yeast mixture to more water and then to flour, sugar and salt. Stir until a ball forms. So simple. But the success of the bread all depends on this yeast. For levity. Without yeast, there is no bread. And to have faith in this bland, tan substance, planning your day around the process, desiring a perfect loaf of bread… It’s that looking ahead thing, the dread of the process, which puts the burden on the creating.

The water registers just below the 130 degree mark. Despite the lack of bubbling, I forge ahead, pushing away the doubts, the predictions of failure. Sift the dry; mix in the wet. Whizz it through the food processor until it becomes a ball and threatens to bust the plastic bowl. Out and plop it down on the floury board, knead it like I saw on TV: push with the heels of your hand, turn, and push. Well-known cooks often like to say that kneading bread is therapeutic. Again, I worry about the right way: how many times do I turn the dough…if too many and I’ve activated the dough’s strong gluten, will it be too tough? Will my baked bread resemble a football again, like the loaf my brother threw down the basement stairs when last I attempted to bake bread when I was 14?

I know that I need to trust the feel of the dough beneath my hands. The heat of the oven as it hovers over the burners. The sound of the loaf when I knock on the top crust with my knuckle. This is old knowledge at play here, something like instinct whispers if you listen. I have learned that if you simply pay attention, you will know when a food is done baking by the smell that permeates the house as it nears its doneness. But bread is not cookies or cakes or casseroles. Bread demands a commitment, a faith that not much other food does. First, I must trust the yeast.

***

My son is almost 2 ½, with developmental delays, not yet walking, not yet talking…so the metaphor here is an obvious one. But this bread is not a metaphor to me, instead it is a step. Maybe someday it will be a practice. I’ve not yet mastered the art of meditation, but I know in my own novice way already that the key to surviving this lifelong journey as caretaker, parent, guide, defender, cheerleader of a child with special needs is going to be to stay in the moment. Tend to the process and let the yeast do its work.

I gave birth to a baby boy whom I thought would be perfect. And of course, before genesis, what is perfect but a myth created by Johnson & Johnson ads, the anecdotes told by relatives and friends of the joys of baby smells, first steps, and that oft-memorialized first day of school? The picture snapped as the child stands before the yellow school bus. Maybe another taken as the child ascends the stairs and does a quick wave goodbye over his shoulder, the fear and excitement held guarded on his face. I looked into the future with that same look, boarded the bus of parenthood with some trepidation, but eager to become the person I needed to be to survive middle of the night feedings, choosing a daycare, searching the internet for a miracle cure for stained clothing, teasing a smile from a pouty face at the bedtime. Oh yes, I was ready for the long haul as I perceived it, wasn’t I?

But there is no way to proof an egg or a sperm or zygote or embryo or infant like I can proof yeast. Though we try with folic acid and a quad screen, the many visits for a sonogram, the Apgar tests, the counting of ten fingers and ten toes. We read books and take classes and listen to the stories of other mothers to provide us with a roadmap for this very precarious journey we are about to embark on. And after the baby is born, we pay extra on our cable bill each month to get “Baby TV” to stimulate our child’s learning and we join playgroups to motivate them socially and we start to research the best preschools in case there is a long waiting list. We are a generation of completely prepared parents.

Sometimes, when I’m at my most cynical, I think must I have had “sucker” stamped right on my forehead because I believed in it all. I believed that if I did everything right, I was guaranteed the happy beginning of a new life, just as I had prepared for. But what I was not prepared for was a reality where even the smallest thing—a smile— might be denied me. Sound idealistic? Maybe it was, but…it was also very, very normal.

When you first suspect your child is not developing in the predicted manner, you stare your fear in the face…flinch…and either log onto the internet or pull out a mammoth guide to babies and search desperately for all proof that your baby is just doing things a little later than normal. You tell yourself that normal is on a continuum. And you can still log your child somewhere on that continuum with a penciled hash mark. You believe you can still fill out each page of his baby book as they are presented. Until you can’t.

There are certain things in life in which you can have a reasonable amount of expectation in regard to the product. If I buy a loaf of Wonder Bread, then I expect to get a slightly saggy loaf that smells subtly of plastic, but tastes like childhood when swiped with some peanut butter and jelly. If I buy a peasant loaf from the local bakery, I can expect a thick crust, something that would laugh at jelly in a mocking tone and demand right then a nice block of aged cheddar. For those who aren’t the adventurous type, but enjoy a bit of homemaking, prepared bread dough can be found in the frozen food aisle. Sure there is some thawing and rising involved, and it is raw when you start out, but let’s get real: you are buying bread dough because it is damn intimidating to make dough from scratch.

Making bread from scratch takes time. It requires the baker to commit a part of a day to the process. And in our culture, other than sitting at our desks or typing on a computer or staring at a tv screen…well, we’re pretty much abhorrent of spending half a day doing any one thing.

And this is how time passes, slower than you can imagine, when your infant, maybe nearing his first birthday, doesn’t do anything, or doesn’t tolerate anything, or doesn’t say anything. Every guarantee you invested in so heavily when deciding to have a baby has been stripped away and your future with your child is an open expanse of nothing. Nothing, but commitment. And commitment is neither black nor white. It is neither hopeless nor full of hope. It is both. It just is. And it is forever. It is a weight on your shoulders. It is a dread in your heart. It is the power of loving this little being beyond the moon and stars while being so angry that he has denied you your dreams for him.

I dreamed of sending my son to a language immersion school so that he could learn two languages very young and have the opportunity to travel to another country as an exchange student. I dreamed of ways I would lead him toward his becoming: gymnastics to learn how to control his body; karate to learn how to be strong of spirit and ward off potential bullies; volunteer work to teach him compassion. I dreamed of dancing with him at his wedding, he at least a foot taller than me, and tolerating my tears. To survive these first two terrifying and tedious years of his life has required me to pack away these dreams in a box that will never be reopened.

So, instead you play with scenarios. Okay, so you are certain your hypotonic son will not become the quarterback of the high school football team. You can live with that; he can do something studious. And, well, he might not join debate or the science club, since learning seems to be somewhat a problem. He can do something creative! And so what if he’ll need to start out school in a special needs classroom? We’ll give him what he needs now; he can be mainstreamed later.

But where do the modifications of our expectations end? And when do we take a hold of the great eraser in our minds and allow for the future to make up its own path? When do I allow my son to unveil himself like a late-season rose instead of throwing on a blanket of Miracle Gro and rushing his rise?

Many parents with kids with special needs feel like we are caretakers first, parents second…always tending, never harvesting. Many feel the burden of the invisible golden chain we clip to our kids’ belt loops each time they go out into the world, hoping to pull them back from rude stares, harmful comments, dangerous intersections, lurking new dangers we can’t even predict. And yet, perhaps the greatest cruelty of all is that we had to learn too soon to let go. Since I cannot predict his future–not this child who has run the rails and determines to make his own way–, then I must simply allow the future to spin out like a good thick story.

And like a story, there is something organic to be found in raising a child with special needs, I suppose. Certainly we take advantage of every possible medical intervention, every therapy, every assistive devise, every medication and supplement; not much of that feels organic. And of course, we know we live in a world of typical people doing typical things and that simple reality can make going to the grocery store a nightmare. But, at some point, we are forced to start listening to our hearts, or to our child’s spirit for clues on how to be, how far to go, when to push and when to hole up in our houses and warm ourselves at the stove wherein bakes a loaf of bread. There are limits to our ability to shape our child in our image, or even our image of them, and instead, we are forced to find joy in the discovery of the person they are.

I don’t aim to romanticize the life of a special needs parent or child: looking on the bright side is not a normal act for me. My heart bursts with anger at all the potential my son has been robbed of. In a perfect world (which I think we have proven does not exist, otherwise my son would be walking and running and asking for a popsicle), Noah would be free to go his own way, unshackled from the expectations I couldn’t help but create for him the moment I planned his perfect delivery into this world. But the world will expect much from him, possibly too much, and from me. The world will attempt to label him, categorize him by aptitude, by accomplishment, put him in his place. As his mother, I hope to present him with a blank canvas, perhaps one with a story told in invisible ink, a story we will know only once he has lived it.

***

The dough is on its second rise. It has taken 2 hours of attention and inattention to come this far. With Noah and his dad out swimming, I have organized the spice cabinet, paid the bills and surfed the internet while I wait, visiting the kitchen every half an hour or so to peek at my loaf of bread warming on top of the stove. I poke two fingers into its smooth, floured surface and the imprint stays. Ready to be kneaded once more, rolled, shaped and laid in the pan copiously coated with grease. A swipe of beaten egg painted on with a kitchen brush will bring the crust to a golden brown when baked. I am ready for the home stretch. An hour at 350 degrees and my bread, for better or for worse, will be done.

I consider what I expect when, in an hour, I pull open the oven door and slide out the loaf pan. It will smell remarkable certainly; I can already catch whiffs in the few minutes it has been in the oven. Since it did successfully rise, it should not be flat as a pancake. Since I think I overdid it a little in the food processor, it may not, regrettably, have a airy interior. And I wonder, will this recipe have that slightly sweet aftertaste of store-bought white bread, or will it have a dense, salty taste from the soda, perhaps better dipped into a bowl of soup than smeared with jam?

The bread bakes, and already I am planning my next loaf. A different recipe that includes a spin of honey at the very end or maybe a handful of hearty wheat flour dropped in for texture. I realize that it doesn’t really matter how this loaf turns out. I have watched and waited. I have, to my surprise, enjoyed the process: my hands on the dough, the rise and fall of the loaf, the heat of the oven, the smell of the bread. Because it is in the doing that I find the patience for bread.