And it was reasonable to assume that I was going deaf because of years playing in bands, loud amplification, drums in small spaces. Often I lacked the strength, the simple lung power, to begin the explanation again. It’s like I’m slowly dissolving, a kind of biological deliquescence. The first two doctors explained that it was a “genetic thing” and had nothing to do with the traditional degradation due to loud noises. The audiologist confirmed it with her graphs and charts. But they, these professionals in Kaiser Oakland, left it at that. Fine, fine, I had the hearing aids and could finally hear again, good enough for the time being. And I could fill twenty pages on the experience with hearing aids: the sound of cars on the streets, people shouting in coffee shops, the snapping and creaking of my own bones: I could hear everything. I was bionic. I possessed super ear capabilities.
Everything happened swiftly. I married the love of my life who brought me back to California. Consequently, I switched to her company’s health insurance. A simple maneuver, you might say. A required physical examination with the new clinic, standard procedure, new forms, handshakes, sign on the dotted line. That’s when they found out.
I shared with the doctor a brief version of my history: born on the front lines of the Cold War in Belgium, near NATO headquarters, where my father and mother had gone to teach in the American schools. Diplomat kids, Honeywell and IBM children, officers’ dependents from military branches and multiple countries. My parents had maintained their California residency and therefore their children were encouraged to attend California schools; I chose UCSB: after Europe, palm trees and blue skies freaked. Transferred to James Madison University and then dropped out. To be a writer, artist, musician, to save the world, to do things on my own terms, to not be influenced by any formal institution, reasoning along with James Joyce and e.e. cummings that I had to “unlearn” everything that I’d learned, “to graduate,” I told my father, “from the University of Life.” I could air-quote forever. But no more.
It was interesting, then, to meet my wife many years later at a wedding in California, best man I was, and to return to the Pacific. We were newlyweds: added responsibilities: the idea of going back to school reasserted. I was still submitting and getting rejected. I published a small travel piece in a travel disaster compendium. I worked as a designer, editor, boss-assistant at an independent publishing house in the Bay Area. I told the doctor that day that events had conspired to convince me to return to school. Moving with a new wife to a new town, with a newly diagnosed disease, returning to school after sixteen years, and, finally, after months of trying, about to learn that Silby was pregnant.
The doctor asked me to step into his office. “I’m ninety-five percent sure I know what you have,” he said. “Without a biopsy, though, we can’t be a hundred percent.” The ears: who would have thought that the ears were connected to the kidneys? Not me, ever. Did you know ears linked with kidneys? No way!
A mutated gene on the Alpha 5 chain that affects the glomerular function. The glomerulus being the intertwined, fibrous mass, a tuft of capillaries at the point of origin of each nephron, or excretory unit, of the kidney. In short, the filtering fibers of the kidneys, but also all other fiber networks of the body, notably in the inner ear and, unfortunately, the eyes. They call this genetic mess Alport’s Syndrome. Unavoidably, I will lose complete kidney function, require a transplant, go entirely deaf and, in extreme cases, lose my eyesight. How exciting is that? I like to tell people that I’m slowly dissolving. It’s also interesting to be plotting one’s own mortality track through life. In other words, I’m already designing a course of maintenance that will extend my lifespan as long as possible. At the same time, however, so as not to engage in undue morbidity, it’s possible that I experience a long, slow decline into old age with one or two transplants.
We moved to Santa Barbara and everything happened at once. Married, a new town, returning to school (which is another twenty pages unto itself), attempting to publish, thrive and survive. This summer, while celebrating our one-year anniversary, we successfully conceived. This was exciting news. For one thing, we’d been trying for eight months. For another, Alport’s Syndrome may or may not affect virility.
Unlike some couples, who wait at least until the second trimester to shout the news, we told everybody in the world. On the first day of school I received a call from a literary agent from New York, who loved my novel and who told me she knew which editors would buy the book. Her list of editor friends is impressive: Knopf; Villard; Random House; Scribners; Farrar, Straus & Giroux. I wanted to call my parents and announce that I was dropping out of school again. Now that I’d finally achieved my goal of being a writer “from the street” and not of the academy.
However, the plan was to attend graduate school, supplement writing novels and short stories with teaching at the college level, buy a house, raise a family, be responsible. Vagabond days behind. Furthermore, I had a pregnant wife and a disease that required expensive diligence. Besides, I love school, having descended from an academic family – great-grandfather and a grandfather were professors, and moms, dads, aunts, uncles, even a brother are educators – love reading, research and writing, love a study that overlooks the ocean, love writing papers, love the pace of university life, live the life of the mind. Perfect fit, right?
Our first OB appointment on the calendar and we were eager for those little ultrasound photographs that would magnet to our refrigerator. The pregnancy books my wife accrued told us our little baby was the size of a raspberry. Our raspberry.
With bad news there are two distinct moments that merge. One, the Before moment, when you’re thinking and behaving one way. And two, the After Moment, when the new information hits you and the brain refuses the information at first. Benumbed. Shock. Disbelief. Denial. Guilt. Anger. Peruse books on grief if you don’t believe me. I merely report what happened to us, and the response our minds, bodies and spirits came up with. A piece of me, a finger perhaps, attempted to hold on to that innocent present, where everything was still safe, right there, hold on to it. I couldn’t. Time wouldn’t allow it; reality wouldn’t have it; our raspberry didn’t even have a say. No wonder Right to Lifers go nuts about any fetal growth. I empathize. I have compassion. Perhaps we should be Born Again. Call the raspberry Christian.
I set the Newsweek to the rack. The movements so quick. We were the first ones in the clinic. The other women, some holding children on their laps, some with huge bellies and blissful eyes, wouldn’t arrive to the waiting room until after we’d received the horrible news. There is before and after. Like the time my Grandma Knapp died on Valentine’s Day. I had spoken with her on February third, and she’d reminded me of how tired she was. Promised her I’d see her as soon as possible. Then she died, while I was living in the trailer on the sloping meadow in Massachusetts. An event so utterly final, I had no say, no holding on, no last words, no final I love you, grandma. She was gone.
And we know, and shall say here now, that other people have suffered far worse than we have. Still we are thankful. We have not lost our wits. We have not lost our hope. We are not asking to win Sufferer of the Year Awards. Mothers and fathers, somewhere in the Deep South or in the hurting rust belt, are mourning their particular, individual number of a thousand dead soldiers in Iraq or Afghanistan that the Pentagon says “Isn’t so bad” and the members of Congress who do not share personal grief and the presidents who led us there under false pretense and never fought anyhow, who maintained our imperial status; and stop me with the stillborn stories, or the radically deformed child stories, and all the mentally disabled children who used to get on the Special Bus on the Rheinstrasse in Heidelberg, where I grew up, near the hospital, blank stares out the windows.
Don’t get me going with the suffering of the world. This is not our claim. But our story is a story and it’s not our fault. It’s not the altitude at Ketchum; it’s not the sip of champagne, the one solitary sip; it’s not swimming in the ocean; it’s not her egg or my sperm; it’s not a race or comparison with your suffering. It simply is. And it is ours. We have to deal with it, with the reality of it, with the overt, searing pain of it.
Dr. Barnes entered and nearly shouted her congratulations. We were happy, my wife stripped down and wearing her gown, her legs in stirrups. The doctor went through the usual first questions: family history of medical problems, high blood pressure, medications. We talked about folic acid. Silby asked if there were chewable prenatal vitamins as the horse pills she was asked to swallow, after seeing the movie “Maria Full Of Grace,” in which beautiful Latinas from Columbia had to swallow sizable latex fingers loaded with cocaine, disconcerted her; each time Silby swallowed one of the pills she would gag and recall the movie; I must have heard “Maria Full of Grace” three hundred times during those few weeks.
“If nothing else,” the doctor lady said, “You can take Flintstones and supplement them with extra dosages of folic acid.” She made us feel better. I cracked a joke. The ladies laughed. My wife’s nakedness and her pubic hairs and the gown falling open in the back. The doctor stood and it was time, the moment we’d all been waiting for, the reason for the season. That exhibition of ours, of our life, our biology, our genetic race.
The doctor stood and lathered Silby’s stomach up with that gel. We joked about the chill.
The doctor said, “Hm, wonder if the nurse warmed up the jelly.”
“Oh, I don’t think she did,” from Silby. And we laughed. We were pals, Silby, the doctor and I. Camaraderie. This was the woman, by the way, who would deliver our baby, would bring our little raspberry into the world.
The cold jelly on my wife’s belly and the doctor began rubbing it with the ultrasound wand. Back and forth, forth and back, on the screen a bunch of black and white, X-ray-esque mush, smooge, intestines and the placenta and the amniotic fluid. “What’s that?” I said, pointing to what looked like a white diaphanous fishing line tossed elegantly against a black felt background.
“That’s the amniotic fluid in its sack,” the doctor said. I looked closer and saw that the fishing line indeed make a full circle and did complete a sack. I was happy for the sack. Silby and I were holding hands.
“Hm, I can’t see the baby,” the doctor said.
“You can’t see the baby?” I asked.
“No, usually you can see the baby. This time I can’t see the baby.” She continued to push and swirl the ultrasound wand. We didn’t see anything that looked like a baby inside. Silby and I were still holding hands.
“I tell you what,” the doctor said, standing up from her belly-leaning and smudging position,“I’ll do the pap smear now, you (pointing to me) wait in the lobby, and then we’ll walk across the parking lot to the other clinic. We have a better and bigger ultrasound machine over there.”
I said okay and left the examination room. I picked up the same Newsweek and finished the jokes and quotes and had moved on into the articles. Julia Child was dead. Henri Cartier-Bresson dead.
There ensued a brief scramble to locate a free ultrasound machine. Our nurse fetched a machine at the end of the hall. Its white exterior yellowing with use and age. The nurse rolled the yellowing ultrasound machine down the hall. We were shown to a darkened room at the opposite end of the hallway. Dr. Barnes turned on the lights. She smiled at me and said, “We share things around here.” Welcoming us to the HMO Sansum experience. The PCP at the family practice clinic connected to the ENT for my audiologist and IM, internal medicine, for my nephrologist and the Alport’s situation, is connected to OB/GYN and you really should try to say obstetrics three times in rapid succession, incredible rapidity, lip and tongue and teeth and lung, is connected to . . . Silby entered the room and was told to disrobe again. A disjointed moment when she, quite admirably and blatantly, the door still ajar, pulled off her wrap-around skirt and was standing there in her underwear.
“Now this one’s kind of invasive,” the doctor said. Invasive indeed: The new machine was ready to go and I couldn’t help noticing how yellow the white had become, how small and ancient the computer screen appeared, compared to flatscreen technology of today. The contraption looked Soviet, a lumbering bulk on wheels some clinic in the Caucasus may have been overjoyed to possess. It did not help that Dr. Barnes fumbled around and had to call in another doctor. We were still enthusiastic, still the happy couple carrying our first, still hopefully waiting to see a shot of our baby on the screen, to receive the inelegant printout copy of our baby for the fridge, white and gray smudge.
The second ultrasound machine’s wand was an invasive stick jammed quite inconsiderately up the vaginal canal. Where many a penis wishes it could be. Where every baby must ultimately extricate itself from its mother. A sacred passage. The doctor applied goo jelly to the tip of the ultrasound sword, and then she placed a condom or condom-like sack over the tip and its entire length; she lubricated it as well with the same cold gel. She wrapped a rubber band around its base so that the condom-like sack would hold in place. She turned toward the region of business. She stuck the thing in my wife and up the implement went, like an explorer entering a modest, moist cave. Like the worm in Dune. The image on the screen was as a tunnel would look to you, rounded edges, darkness then light. “There’s the placenta,” she pointed out. “And there’s the amniotic fluid. . . . .” a pause, “Oh, and there’s little George!”
George? No matter. She’s from Minnesota. Or Wisconsin. She was being nice in her own way. We quickly discarded the name George, utilized the word for what it really meant, and gazed upon our baby. There was our lima bean, a sesame seed grows, to now our raspberry, curled up sweet and secure in its mother. A fetus? Sure, a human being, our human being, the next generation, our baby. On screen it looked so comfortable, so where it should be, so uniquely beautiful. A miracle. Silby and I squeezed one another’s hands.
“I can’t find the heartbeat,” Dr. Barnes said. Silby squeezed harder. I had no idea that this meant anything. Assuming, naturally, that she couldn’t locate the heartbeat, simply, as she hadn’t located the baby on the first machine. No biggie, keep searching doc.
More wiggling with the ultrasound worm and still no heartbeat. “There should be a heartbeat in there,” she said. She pointed with a pen; I believe it was a pen. It could have been a finger. “We should be able to see a heartbeat.”
“Well . . .” I stabbed for something and came up empty. Still thinking this was part of the normal process.
“You can see it from across the room,” the doctor said.
“What does this mean?” I asked. “I mean, what are we talking about.” The doctor froze the image on the machine and removed the worm. I saw her take our black and white printout photograph and stick it in her lab coat pocket. She looked at me, a little bewildered herself, not sure how to proceed. And she said in a whisper, “I think that your baby has died.”
Like that, the before-moment and the after-moment. Now instead of engaging the breezes of bliss, we were in a land of torture. Silby began sobbing immediately. She turned her head into my stomach, my red white and blue Oxford button down short sleeve shirt, and continued sobbing. I held her head and stroked her hair. I didn’t know what to say. The doctor and I engaged a small, tight conversation, she whispering, over Silby’s crying head. Silby clutched at my shirt.
I had not yet accepted the news. It was too blunt, too surreal. Like the time I was struck by a hit and run driver and in the hospital, ready for my third surgery, and I didn’t know how close I’d come to dying. Consciousness had not wrapped around the notion, the idea, and I was still left whistling my general tune.
“When could this have happened? I mean . . . She’s been growing and her breasts have been growing and everything has been going according to schedule?” It wasn’t incredulity. It was more a numbing essence within the Twilight Zone, a complex refusal by my mind to hear what the doctor said and to bear what was actually happening.
“In the last three or four days, I suspect,” the doctor said. She had backed away from the machine. Silby still turned into my stomach. I held her with both arms. The doctor spoke in an extremely quiet whisper, as in a cathedral lighting prayer candles and you’re not supposed to be speaking at all, a cold, religious whisper as beneath us Silby sobbed, tears staining my shirt. The doctor – the move was so automatic, so unthinking, so mechanical, so a part of the process – grabbed some tissue from the mounted wall box of tissue, the box within stainless steel, and handed it to me not to Silby.
This couldn’t be happening to us. Thoughts raged in a welter inside my brain. I fought for coherence. In the last three or four days? Our little baby? A baby whom we could see, right there in front of us, on the screen, seemingly alive and content, happy and snug inside its mom? Come on! Not real, not us, not on this beautiful Santa Barbara day of smooth breezes and my clean trousers and the easy “rush hour” at successive four-way stops? Please! Silby crying and clutching my shirt.
This, this, miscarriage of justice, of hospital work, of the yellowing Soviet machine. Fuck them all! They don’t know what they’re talking about, it’s obvious. The doctor a stumbling buffoon, can’t even work the machine, first couldn’t find the baby and then couldn’t find the heartbeat. Miss Carry walked with her parasol to the store. I certainly do miss Carry. She was always so good to us.
My wife continued to dab her eyes and cry at the same time. I found a brief moment to marvel at the body’s production of excess saltwater. Where does this liquid come from? Why do we cry? What is it, physiologically, that is going on? Physical manifestation of extreme emotion, what is this? Isak Dinesen, real name Karen Blixen, said “The cure for anything is saltwater: sweat, tears or the sea.”
In search of lost time; in search of a lost baby; we cannot reach back to the Before Moment and change things. We may spend time mournfully in bed, dreaming of the fabric of the past, constructing a daydream reality which in some becomes their salve, their cathartic release. But we cannot change the past no matter the sufferings of the present. Proust may have utilized the memory stored in his amazing brain in order to deal with the sweet agonies of his present. Swann may be constructing his idealized Odette. But we could not jump back to the reception room, when the cheers of “Congratulations!” cascaded over us, when we were the innocent, simple new parents, eager for the process, holding hands in serenity, giving ourselves sweetly to the experts.
There was no discussion, no negotiation. Swirling in my mind, in our minds, were the painful agonies of the past. For one, Silby’s father, Lynn, died of a heart attack when she was one week old and her sister, Suzy, was one-year-old. There was never an autopsy. A recent article in the New York Times suggested that a medication Lynn was taking at the time may have caused fatal heart attacks. Her husband dead, Silby’s mom removed the two young girls back to Springfield, Illinois, to be with her parents and ultimately St. Louis, Missouri, where Silby grew up. Before Suzy was born, Lynn and Betsy had a son, born blind, named David. David lived for six months and then died.
It is a wonder how Betsy has held things together, how she raised two intelligent, beautiful, nice women. Her actions manifested a miracle in perseverance and overcoming. Now, with my disease and with the initial difficulty in getting pregnant, there are looks, unspoken thoughts, behind people’s eyes. And so, upon the insult to our glory arrives the miscarriage, the looks and thoughts are our own. There are worries and fears behind the manifest, torturous current facts. What ifs, deeply sad or grotesque scenarios about the future. The reading we would do in a half hour after the lab, both in books and on the web, wouldn’t help any. Riding the tidal insistences of Nature. Alive and not alive. A pendulum swing beyond anybody’s control. The Buddhist has not dissolved mankind of grief; the religions of the world have not disbursed anger and guilt; the philosophies of ours have not alleviated the distinct sadness of tragedy and loss.
The thoughts careen in our minds and occasionally find form between us. Dead babies and tragedies of the past, new designs on hope and promise, a particular yearning for goodness and a quality of life, for the precise removal of pain and suffering, a desire for sanity and righteous bearing, a focus, a positive movement, a sharing. We are not lemurs; we are not unthinking wildebeests, opossums dropping them one after the other, we are not. No matter the ability of humans to assume or presume the aspects of torrid nature, we are thinkers, and therefore we suffer grandly.
We lay in bed, in front of our bedroom window, and held one another. We did not yet read the books or search the internet. Had not yet seen the Islamic Miscarriage website. We lay there clutching one another, Silby’s body shaking with her sobs, then quiet again, still. Morning doves aurally accompanied the moment, repeating themselves, holding steady, for an hour. Do I take this as a sign? A sign of mourning? Plaintive, melancholy? Or a sign of hope, life going on, our birds charging after the necessities of life, instinctual passions, biological continuation? I chose not to think one way or the other. But simply lay there, holding my wife, listening to the bird’s refrain, over and over.
“It’s like a popped balloon,” Silby said. Referring to her womb, to her hopes, to the bliss we’d been carrying along. I pictured a large needle jabbing into her placenta and saw the drainage, the punctured balloon flitzing around the room, the needle perhaps the invasive ultrasound wand. A fleeting thought, “What if Dr. Barnes killed our baby with her prodding, with her stabbing?” No way, not a chance. I held the sagging balloon in my hands.
Then I remembered that I once killed my baby. My first baby, with a girlfriend long ago. We were young. We killed the kid and Anne enduring morning sickness on the Green Line in Boston. After getting out of jail, if you can imagine that, having been busted for growing twelve tiny marijuana plants in Virginia. They threatened her with thirty years and she did a month. We conceived somewhere around my birthday. And in March she’s puking into a brown paper sack that may have been our lunch along Commonwealth Avenue. I paid for the abortion and she managed Planned Parenthood in Virginia without me. I don’t know if she ever told her mom, ardent Catholic on her knees in front of her rosary, once a nun and then God spoke to her to “go forth and have children.” But we killed our baby, somewhere beyond a raspberry or lima bean, and that was that, we lived our happy little lives, eventually went our separate ways, she’s now a lesbian in Northampton, and I couldn’t help but wonder, lying there listening to the morning dove’s dolorous lament, whether this was God’s way of punishing me. Of teaching me a lesson.
“Son, you once with complete disregard to the ways of life murdered your little baby at three months and now you shall pay. You shall see what’s it’s like, selfish human, when you want one of your own. Perhaps it will teach you the necessary respect for life that my good friends in the Christian Coalition have been saying all along. Oh, you didn’t want that first one? So you simply took matters into your own hands? I see, yes, I see.”
It was true, we made a choice, we the liberal north easterners, readers of the great books, tap dancers in the humanities, give us our museums and our wine and cheese. We chose not to have the baby, we weren’t ready. And now, now when I wanted one badly, when Silby wanted one with all her life, the raspberry was taken from us. But, there was still a minute degree of hope, simmering there in the daunting frying pan of our lives. I refused to believe the professional medical people and the yellowing Soviet machine. I said, “I’ll let your body tell me. Let’s listen to your body.”
I waited a few days to admit that I noticed a stop and then finally a diminution to Silby’s outward physical growth, her belly and her breasts and her hips. Her body had halted its outward push. It was plain and apparent. But I held on, these medical people and their cold no-nonsense don’t know squat. The body knows, Nature knows, and I’m paying attention to the latter. I refused to believe that, “God’s special way” of increasing the odds of healthy children actually born applied to us. Can’t tell me about our raspberry, our little raspberry, our baby knows everything.
School underway and a passion for it, for reading and writing, for the smell of the books on the library’s seventh floor. Silby engaged the unfortunate dilation and curettage procedure, cleaned her out, set the body to healing. Santa Barbara and the Pacific Ocean and the cavorting dolphins in the Channel still wondrous, the breeze with whispers of the present and the future. Silby had her first period after the fact, then her second, the body’s cycles synching with the ways of the sun and moon, the two of us trying again. My book dreams bouncing around the big offices in Manhattan, the two of us embracing this new town on the sea, I marveling with recollections on the paths of my old eighteen-year-old self, when I used to walk bewilderedly on campus, a return, full circle. My ears and my eyes and my kidneys fading. Silby and I walked on the beach contemplating these circles of existence. Already we have moved into the pith of life, confident and sane, filled with hope and promise, toward the realization of our dreams.