A Fierce and Tender Heart Are not my days few?

cease then, and let me alone, that I may take comfort a little, Before I go whence I shall not return, even to the land of darkness and the shadow of death. -Job 10:20-21 The locals call it Good Sam. More widely known as Good Samaritan Hospital, this gargantuan red brick edifice stands astride northwest Portland like a colossus, cloaking that part of the city in shadows cast by soaring skyways, parking structures, nursing schools and clinics, creating an indelible dusk where wellmeaning urban planners' dreams go to languish. Perched on the southwest corner of the hospital's third floor, is the Kern Critical Care Unit. The CCU overlooks the intersection of Northwest Lovejoy and Twenty-third streets, a picturesque crossing where crowded streetcars, stylish shops and trendy restaurants all serve a public oblivious to the life or death struggles unfolding just a curious glance above them. Each CCU patient's room features a view of that breezy corner, as if in silent yearning for whatever scraps of life-giving energy the drafty darkness might have left to offer. I stand in the CCU, where hopeless dreams go to die, having come to see my wife. Her name is Sally, and she is the mother of six: Loey (26), Sarah (24), Andy (22), Charlie (19), Will (19) and Em (17). In order to alert them to their mother's condition, I've emailed the two oldest before my return to the hospital: Dear Sarah & Loey, I find I've not updated any of the numbers for you kids in my cell, so I'm sorry to have to email you with this news.

At mid-morning today, your mother again complained of ongoing breathing problems sufficient to call 911. When they arrived, she was barely breathing, but conscious. While they were here, she suffered a seizure and stopped breathing completely. They intubated her, put her in the ambulance and, on the way to Good Sam, her heart stopped. They were able to get her there while doing CPR. The ER people at Good Sam saved her life. She is presently unconscious and breathing with the help of a ventilator on the Good Sam Critical Care Unit...please call when you can and I'll explain what's going on further. Please don't try and call her, she's unconscious and being closely watched by the CCU people. Mean Old Dad

To pass through the CCU's heavy wooden door, one must be a medical professional, a volunteer or a patient's loved one. I wait in the secluded, mauve toned sitting room while a kindly, white haired woman confirms my identity. Then, by way of a wall mounted telephone, my entrance is authorized. We walk down a fifty foot corridor before I'm handed off to a nurse who directs me to the right, where the unit's core lies. The hand washing station is our first stop. Hygiene protocols are like tribal rituals here. Once one is ushered in, one's hands must be washed before proceeding to a patients room. Then, before entering that room, hands must be resanitized with a chemical dispensed from a canister by the door. I'm not of this tribe, but I'm a quick study, so I push up my sleeves and comply. As I scrub my hands, I note the CCU is remarkably quiet, unlike the emergency room where I spent the lion's share of the day. A low slung, acoustic ceiling complements sound absorbing carpet while, to the left, the nurses' station's cubicles are all done in a velvety, earth-tone fabric. There, professionals banter in subdued voices while reviewing printouts, charts and other sources of what I assume is crucial patient information. My gaze moves to the layout. All patient rooms are visible from the nurse's station, the focal point of their semi-circular array, and each is equipped with curiously sleek treatment and

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monitoring apparatus. All patient rooms are separated, one from another, by smaller spaces I soon learn function as conference rooms equipped with diagnostic equipment and incidental supplies. And all patient rooms are accessible from not only the center of the array, but from each smaller space, as well, by way of sliding glass doors no different from what one might find on a hotel balcony, or leading to one's own back porch. My observations are interrupted by a perfunctory introduction to the CCU director. He is an earnest young doctor in a pristine white coat who leads me to one of the smaller rooms adjacent to that in which my wife was placed just hours before. Although barely large enough for three seated people, it offers a confidential setting, presumably for talks like the one I'm about to have on this Wednesday, Oct. 3, 2007, at this hour, 5:30 PM.

This is my diagnosis. The Director hoists himself on a stool. His words are measured, his voice authoritative, at odds with his diminutive frame. I study his eyes, his stony Asian countenance for some clue as to what comes next, but find nothing. So I lean forward to listen as he carefully straightens the X-ray attached to a back-lit, glass topped table. I listen as Ive never listened before. We call it a pulmonary embolism, he begins. Each vowel, each consonant, each syllable is perfect and precise, reflecting the care with which his delicate finger traces the ominous image before us, an image he studies like a mesmerized child. I lean over his shoulder, adjust my glasses for a closer look, then survey the specter at the tip of his manicured nail, hoping to fathom his fascination. Thousands of feathery wisps of gray are gathered there, a mass of charcoal dandelion spores merging into a broad pool of blackness, an obscenity staining the center of the smoky chest film.

It is a trauma to the lung vasculature which can only be described, in this case, as massive. He shakes his head slowly, still enthralled by the mystery before him, and maddeningly oblivious to the growing lump in my throat as he sighs, yes...massive. He turns, his expressionless eyes settling flatly on mine as he assumes an instructive tone. We use the term, diagnosis, simply because your wife still breathes, because her heart still beats, not because she still lives in a meaningful way. He pauses to pocket his glasses, then confirms all the staggering implications of that statement by adding, You must understand; this is rarely a diagnosis, almost always a cause of death. He nods toward the door. "Please feel free to spend time with your wife while I tend to other business. I will return shortly to discuss our next step." Diagnosis. Embolism. Death. Time out.

Experts say that pulmonary embolism (PE) is not only common, but a potentially lethal condition, the prompt diagnosis and treatment of which are critical. The rate of death for patients with massive PE is between 30% and 60% depending on the study cited, with the majority of deaths occurring in the first 1-2 hours of care. Experts will also tell you that patients who die of PE will often have complained of nagging symptoms, almost half having seen a physician within weeks of their death. In my wife's case, the nagging symptom was "deep vein thrombosis," or blood clotting in her leg. No, she didn't see a doctor; she saw a nurse practitioner, the only medical professional available given our limited resources and lack of health insurance coverage. She complained of redness, swelling, warmth to the touch and pain. The nurse practitioner's diagnosis: water retention due to menopause. She did not recommend consulting a physician.

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Diagnosis of PE is often missed because symptoms can be vague. Least vague among them: shortness of breath, chest pain and hypoxia (limited oxygen to the tissues). When these symptoms appeared, several days after her visit to the nurse practitioner, my wife went to the Good Sam emergency room and was told to stop taking iron pills. She was then sent home to rest. Fortyeight hours later, she suffered the embolism. * * *

I gingerly pass the foot of the bed, my eyes glued to hers, hoping they'll open any time. Were it not for the blinking, beeping, ceaselessly hissing contraptions clustered at the head of the bed, I could imagine her simply sleeping, like a small child nestled among off-white sheets, barely visible. I try to plan a response should she awaken. Perhaps I could offer her something, scold her for scaring me this way, smile and welcome her back. Now I stand to her right and lean forward, my left hand stroking her hair as I squeeze her arm with my right. I ignore the conspicuous tubes so tightly taped to her face and stupidly ask how she's doing, then tell her I love her. It's clear those who love her must gather to face this crisis, starting with the children: Loey and Andy will travel from Memphis; Sarah, Em and Charlie will come from New England; Will remains at home. How do I tell them? They lost their father in '92. Their mother and I were married in '98, she a widow with six children, me long divorced and childless. Yes, they have one another; yes they have the New England relatives; no, there's no replacing a mother. But I can't quite bring myself to imagine that kind of ending. So I think of her strength, her resolve in the face of long odds, of her fierce and tender heart. The big tube is for breathing. A smiling young woman in a flower print top stands at the foot of the bed, just inside the door. She wears loose fitting, purple slacks and what appear to be Nike sneakers. "I'm Becky."

I'm Mark. I try to return the smile. She can't breathe on her own." Becky's voice is gentle, soothing and friendly as she rubs the ubiquitous disinfectant into her palms. "The small tube feeds her. I see, I reply. But I don't, really. Mine is the plight of the powerless, an unwitting witness to some sort of high-tech sance, a hands on technological faith healing I don't understand. I glance at one of the several monitors hovering above the bed. Horizontal, undulating, multicolored lines relentlessly march across the screen, telling parallel tales beyond my reach. Becky, noting my consternation, talks in a soft, patient voice about heart rates, blood gases, blood pressure and other things I haven't the energy to further explore. She then lifts Sally's left wrist, checks her intravenous tube, and empties the urine filled catheter bag hanging from the foot of the bed. She waves as she shoulders her way past The Director, who stands in the doorway by a woman I've yet to meet. The Director: What a cumbersome title, I think. I decide to remember his name this time and glance, once again, at his badge. It reads "Dr. Leong." He introduces his companion, the first of many doctors whose names I will never recall. I will, instead, always recall her as "Sarah" due to her close resemblance to my second step-daughter. I note the diamond dotting the left side of her faintly freckled nose and sigh at how out of touch I've become. A doctor with a nose stud. She brushes back strands of heather hair that caress her powder blue eyes, eyes bearing a look of subtle sympathy, a look upon which my own eyes linger. Startled, I suddenly realize it is a look I will come to know quite well. This epiphany is one of a slowly churning vortex of emerging revelations, offerings from what I shall come to refer to as The Fates. The Fates' agents appear in different guises: some wear white, while others wear flowery tops or surgical garb; some smile kindly, while others are stoic as they patiently await my dawning awareness, the moment I realize

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the true gravity of the event over which I'm powerless. All, without exception, are more aware of my new reality than I. I want to cry out: stop...let's just get back to the way things were. But we commune in separate dimensions for now. Sarah begins asking questions about my wifes health, her allergies, and her lifestyle as she busily makes notes on a clip board. I'm distracted by her soft tone. I want to surrender to her subtle compassion rather than face what I fear may be coming. I want to embrace the comfort, the respite, then float away on a cloud of casual regrets: never mind, my misunderstanding, everythings fine. We'll just go home now. But her eyes clearly want answers. I choose to speak of Sally's wanderings in the night, her delirium and the narcotics she takes for the pain of the osteo-arthritis that has turned her spine to granite. I discuss her seizures, the oddly recurrent affliction that imprisons me as her care giver with its maddening unpredictability. It's the "complication" that prompts raised eyebrows, then sends those from whom we seek health care coverage scurrying for the door murmuring terms like "pre-existing condition" or "uninsurable." Should I tell this young doctor that I leave the house early, after my wife has finally collapsed in exhaustion, to get all my errands done while I can still be reasonably certain she wont do a swan dive down the basement stairs, or climb behind the wheel? We need to discuss her treatment, The Director interjects. "There is a drug I want to try." "Pardon me?" "A drug...it's called TPA," he says. I'm dumbstruck. Of course; I shouldve known. Theres always a drug. I'm ecstatic, yet confused as he goes on to say he wants my permission to use it. Why would you need permission? Yes...yes...of course. As he continues, his voice seems to fade, as if he were receding through both

time and space. My thoughts scatter: Where's the drug? Get it...now. He says it's a "clot buster." I frown, trying to focus as he goes on about Sally's...what was the word...vasculature. He adds that TPA can cause bleeding in the brain with potentially...what was the word...catastrophic results in one so... delicate. I strain to hear. It seems they must monitor the procedure. If she shows signs of such bleeding, it will have to be ended. "I need you to know it's a one shot deal," he says. Did he say..."one shot deal?" I need us on the same page, he adds. These colloquialisms, so casually put, seem like his attempt to establish a bond with me. In this bizarre world of distorted perceptions, it's almost as if we're playing a game. But a game in which I, in my euphoria, have misunderstood the stakes. "Please know...I see this as her only chance of survival. His voice is clear again. Yes, the CCU is where games are played for keeps. Normally, when I wonder if anything has a chance, I mean will the pill cure my headache, will the injection ease the pain? Here, it's the more basic issue: her life. Many things remain undetermined. The Director moves closer, using an intimate tone as Sarah, still scribbling, ducks from his path with a deftness that almost seems choreographed. The neurologist has yet to examine her," he continues. "So we wait while doing what we can to break up the clotting. He extends a clipboard. "This is a consent form. Please sign. I stare at the form, then embrace it, holding him hostage to my signature, afraid if I sign, hell disappear, leaving the rest of my questions unanswered. How will we know..." Actually... He checks his watch, ...I dont need your permission. I only prefer it.

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I stare at the bridge of his nose. My mind rages: Yes, stupid questions, Im sure, but I don't give a damn where you need to be. I want my wife back. I want to hear her laugh, feel her tears on my lips... The Director retreats as Sarah abruptly steps forward, her vigilant eye betraying as feigned her nonchalance. There's a hint of alarm in his gaze. Then it wanders. Mine does not. Im sorry." He finally concedes the tension with open arms. "There are so many variables. My first concern is her heart. It is under heavy strain, and we have no idea how much, if any, cognitive function was lost when it stopped. Sarah retreats, still alert. But we can know nothing until we remove the clotting and bring down her sedation. Those are the central issues. What does cognitive function mean? Her ability to hear, feel, understand. Her ability to experience meaningful life. Theres that word again: meaningful. What does that meanto anyone?

March, 2005. Sally nestles on the living room couch, knitting, her fingers a blur as we watch the evening news. A Florida woman, Terry Schiavvo, has been the object of massive coverage, resulting in an emergency session of Congress. They've been called to Washington by a president wanting to overturn her husbands decision to order her feeding tube removed after nine or so years of fruitless efforts to revive her. This is long after her diagnosis, Persistent Vegetative State (PVS), had been confirmed.

Dont ever do that to me, Sally growls. Dont ever make me go through that. Dont ever make the kids go through thatdont ever, ever, ever let anyone leave me like thatlike a vegetable. It sounds like the husband is doing all he can. After youve done all you can, and nothing has worked, if you have to sneak into the hospital and unplug me in the night, dont waste timejust do it. She knits even faster. None of this nine year shit. I promise. I don't ask when she began thinking about how she would die. * * *

My wife was born on December 10, 1953, the oldest of five sisters, the four younger being Kitty, Susan, Amy and Carrie. Dear Sisters, ......I was urged to approve an aggressive clot busting drug in spite of the possibility that it could result in bleeding in the brain. The two hour regimen was interrupted halfway through when it was discovered that she was beginning to bleed from both the nose and neck. The bad news is that the drug cannot be administered again, which leaves us with only her heart and blood thinning agents to combat the clots. The doctors were pessimistic, telling me it was unlikely her heart could do it without failing. That was Thurs. Her heart remains strong and regular. The doctors have now turned their attention to her brain, which is showing signs of "significant neurological deficit". They say it is due to oxygen deprivation. I have vigorously argued against this conclusion because of the speed with which she was intubated and CPR was administered. They counter that the CPR may have only been moving "bad blood" around. They are now slowly weaning her off pain killers and sedatives in an attempt to bring her as close to consciousness as is necessary to evaluate the extent of the

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brain damage. That will take two more days. Sarah, Loey, Em, Charlie and Willie are here. Andy arrives today. Your mother arrives this evening... Mark It's nearly dusk when my mother-in-law, Anne, arrives from Connecticut. We go straight to the hospital from the airport. I tell her all I know on the way, especially about the threat to Sally's heart. She remains the picture of silent, Yankee stoicism until, with a confidence born of desperation, she frantically nods, "She has a strong heart; yes, she has a very strong heart." As we stand silently by the bed, The Fates intercede, reminding me that I'm out of place, in violation of a sacred bond. So I leave her alone with her daughter to pray. Anne cries.

It's the fourth day of our vigil. The children are home, set up and sleeping in the CCU sitting room. They take turns, two at a time, with their mother, cheering her on with photos and cards tacked to a bulletin board. Then they conduct quiet, tearfully one-sided conversations. I find myself in meetings with doctors, more doctors and more doctors, then clergy and the children. Friends come and go in shifts, trying to keep me sane, but I feel myself change as The Fates decide everything now. Exhaustion is ever present, rest no longer an option. There's a ceaseless vibration deep in my chest I can't ignore; I may as well try to sleep on top of a speeding locomotive. This is my new understanding of stress as night becomes day...becomes night. I'm constantly hungry, living on coffee, thus constantly wired and in a state of stark awareness. Having "hit the wall," I dwell in a netherworld defined by the vortex of emerging revelations. Then it suddenly crystallizes. It seems The Fates, satisfied I've been purged of all pretense, have finally decreed my veil of innocence be lifted. I'm abruptly aware of those who know The Fates...because I've joined them.

It's clear who they are by the questions they ask. Remarks from those who know aren't rude, just terse and to the point: Have you slept? Have you eaten? Stay here. Don't move. I'll get you something. I comply, knowing they see what I finally see. They recognize The Fates as immutable, undeniable and unforgiving. They know The Fates demand utter humility, which is reached only when one is on the verge of utter physical, emotional and spiritual collapse. Those who don't know simply watch for a time, curious. They are the uninitiated, oblivious to The Fates as they offer trivial distractions. Their questions, well meaning, are intended to help me evade the truth: "Did you watch the Sox last night...what a game, huh?" I limply reply that haven't turned on a radio, read a paper or watched TV in days. They may then venture, oddly, "So...how are you...uh...doing?" I want to reply, "Don't you mean how am I doing it?" But the truth is that I simply don't know how I'm doing anything. I only know I'm doing it one thing, one moment at a time, dancing as fast as I can to the tune orchestrated by The Fates. * * *

The Babinsky test is a simple thing. It involves what medical professionals call the Achilles reflex. Newborn babies respond a certain way. As we age, the reflex disappears. If they suspect significant neurological deficit, one of the ways they determine its extent is by stimulating the sole of the foot. If an adult patient responds like a newborn, with the toes curling outward, they know there is serious brain damage. Dear Sisters, I spoke with the neurologist about two hours ago. He has applied what he called the "Babinski" test to her reflexes, which he says respond like a newborn baby's. That is indicative of serious injury to both sides of the brain. When they tried to withdraw sedation to do more tests, her respiration and heart rate responded, again, as they would with a serious brain

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injury. They will do another CT today, then continue to try and draw down the sedation more slowly while hoping for improvement. But he is not optimistic. Please be advised that, should you talk with any of the kids, the only ones presently aware of the totality of her condition are Loey and Sarah... I would call you guys with this stuff, but my heart is breaking and I haven't done my crying yet, so I break down too easily on the phone. Love Mark It would be nice if hearts broke cleanly in two, to be easily reassembled by those who love us most. Just apply some glue, tap them back together, let them dry and polish them until the crack hardly shows. But hearts shatter, scattering dreams like brittle glass. As we search for the pieces through terrified tears, shards catch the light of memory in passing, as if to taunt us into recalling the laughter and sweet kisses well never have again, the joy that has slipped into blackness. The blackness has taught me the practice of "tactical grief." I find a place, a retreat when the grief is overwhelming. I go there, cry and do what I must to compose myself before re-entering the world. The hospital chapel sits no more than forty paces from the CCU waiting room door. Beside it, perhaps another ten paces, is a small, well-manicured courtyard with unseasonably green grass and neatly trimmed shrubs. They call it The Rose Garden. On one side is a walkway and a row of wooden benches, one of which I've chosen as a tactical grief retreat. It's now the fifth day of our vigil, and there I grieve, while beside me sits a woman I see only after lifting my tear streaked face from my hands. She's the black clad woman I've only seen lingering in the shadows until now, the hospital chaplain. I apologize without knowing why, then tell her who I am. "I know who you are," she smiles. "And why you're here...that's my job. I've met your children; they seem to be doing as well as could be expected...all of them camped out in the sitting room like they are."

"I'm told we need to find places to cry." "Good advice. I suppose that's why the garden is here." "I suppose." "We can pray if you'd like...that's my job, too."

The Fates grow bored with me now. Their latest agent, the neurologist, reminds me that repeated Babinski tests show substantial, irreversible brain damage. And there has been no meaningful change in the brain activity (EEG) results. He says he's studied them both before and after the sedatives wore off. They are conclusive; it is bleak. He speaks the language of science in soothing tones of condolence as his eyes urge acquiescence. I have acknowledged the fact that I will never know why The Fates want my wife; it's simply none of my business. I want the doctors to stop talking about meaningful life. But forming words, like remembering to breathe, or eat, or sleep has become a chore. It's as if the most instinctive things my body does must now be conscious acts of will. So I listen. The doctors say seventy-two hours is the norm in these cases...give or take. That's the time it takes for organs to shut down once life support is removed. They say the only organs suitable for donation are her eyes and skin. They feel she's best moved to Portland's Hopewell House Hospice, where she can spend her final hours surrounded by those who love her. It's Wednesday Oct. 10, 2007. My choices are gone, so I surrender: Take her; I have nothing left. Dear Sisters, Your dear sister, Sally, was removed from life support at 1:00 PM today. She rests peacefully, knowing part of her will live on and help others in the form of skin and eye donations. She is surrounded by her children, and is expected to pass in the next several days. I will let you know as soon as it happens.

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Love, Mark I retreat to the somber sitting room and its overstuffed couches and chairs. Six of my closest friends wait, having remembered when we intended to disconnect her life support. Simply grateful, I don't ask how long they've been waiting; we just embrace one another and cry. As we do, I notice a sad eyed young woman standing patiently to my right. When I turn to greet her, she hands me a sheaf of papers and a business card identifying her as a hospital social worker. She says, "Please contact the hospital business office as soon as you can. This is for hospital services only. It does not include emergency room, transport, diagnostic or doctor's services." The sheaf of papers is an itemized invoice for $106,000.00. I later learn the total cost of my wife's eleven day journey into death is $127,000.00...give or take. * * *

I resolve my hospice visit shall be uneventful, just a business meeting with those responsible for my wife's care. I arrive Thursday morning, beneath a dry, dismal sky, noting the quiet setting and beautifully landscaped grounds. There's a reflecting pool, many shrubs and several sitting areas by the garden. I enter the building, doing my best to maintain control, but The Fates greet me with an echoing reminder: yes, this is where your wife will die. My knees buckle, and I sit, my head in my hands as people around me obliquely accept my presence while tending to those they serve. Such anguish is the rule here. It's Sunday Oct. 14, 2007, at 5:00 PM. Sally draws her last breath surrounded by her mother, her children and myself. We take turns toasting her life with the hospice staff presiding, as is the custom here. Then everyone melts away...but me. As her husband, I must speak with those who will harvest her skin and her eyes.

I make no mention of the things and the people she loved, the pain, the misery preceding her death...or her fierce and tender heart. It's simply a twenty minute conversation about her medical history and lifestyle. When we are finished, I return to her room one last time to find her hands neatly folded across a purple orchid, and her loving eyes tightly covered with ice packs. I kiss her one last time, then depart for the rest of what's left of my life, oddly graced by The Fates' final revelation: Now is the time to be grateful. Her eyes are free to watch children play...or even fall in love once again.