I can’t remember what time of day it was that I took Patrick to the ER. I can’t tell you how long we waited, or the name of the doctor who examined him. I only remember that he was admitted, and it was bad.
Research Medical on Prospect has one of the two kidney transplant centers in the Kansas City area, skirting the east side's infamous Murder Factory along Sixty-Third. I went home to pack a bag—a change of clothes, laptop, and, most importantly, shampoo, deodorant, toothbrush, and the like. I know from too much experience that hospital soaps and shampoos are usually some cheap-ass shit and in these situations, little luxuries go a long way.
When I returned late that evening, there had been a shoot-out in the parking lot. A beat-up car, riddled with bullet holes, was sitting in the emergency lane—I hesitate to use the word ‘parked’ since the car looked like it had screeched to a halt, its passengers evacuated, and somebody just happened, as an afterthought, to throw it into park. Glass sprayed white across the blacktop like shards of ice, glittering in the red-and-blue strobe of squad car lights. Inside, the waiting area was a sea of uniforms. There had to have been at least fifty officers there. When I entered through the sliding doors, clutching my gym bag, my backpack, and a laptop case, every single one of them turned to eyeball me. I wanted to snap at them, “Oh, for fuck’s sake. I’m a short, bespectacled white chick. For once, make racial profiling work for you.” I didn’t, of course. Fatigue held my tongue. The knowledge of how inadvisable it would have been to mouth off to a roomful of cops who were already on-edge and needed very little reason to go all stun guns and pepper-spray on me was irrelevant.
One day at the hospital. That was all it took. I had entered a world of unreality, florescent lights both too bright and not bright enough, shadowy visitor’s lounges and stark help desks. I had become part of the passing scenery in other people’s life-and-death dramas as they were the scenery in mine.
I would find out in short order that the area around the hospital is so dangerous that the building actually goes into lockdown at 9 p.m. The only way in is through the ER. You have to check in with security and be issued a visitor’s pass. They keep one corridor open and you have to be buzzed through a series of locked doors to reach the elevator.
Shifting the straps of my various bags from shoulder to shoulder, I took the elevator up to the fifth floor. Renal ward. Room 5257.
It is New Year’s Eve. 2008 is out, 2009 in. But time is an abstraction, not the hard line that most people think it is. It’s amorphous, unreliable. Hospital time’s worse. The damn lighting. It never changes. The temperature has nothing to do with the season, nothing to do with the greater world beyond. There are New Year’s decorations up, but it’s hard to credit the cheery, tinseled banners against stainless steel beds, eternally buffed tile and the unending drone of machines. Obama’s all over the television, but his face is reduced to an image on a tiny screen in the corner, impossibly far away, irrelevant. You have no power here, Mr. Commander-and-Chief. I can still see the reflection of the television off the window glass in Patrick’s room, bluish and cold. But I can’t see what lies beyond it. It seems I have lived my whole life in this room.
The nurses are kind. When the heater in the room stops working, they are the ones who keep calling and yelling at the maintenance guy to hurry up and fix it. Patrick is anemic, and always cold. But they are thinking of me and my comfort, as well. They bring me cheese and crackers, dishes of ice cream, cans of pop. They bring me smiles and peaceful pleasantries. They bring me a roll-out cot, blankets and pillows. I impress them with my sweet, tough-girl selflessness. But they’re wrong. I’m not sweet or selfless. I’m hiding out. I’m hiding out in this suspension of reality known as room 5257, unable to face the world outside of it, the world without Patrick.
At midnight, the guns and firecrackers start going off. Patrick has long since fallen asleep. Car alarms sound, the inevitable police sirens scream. The gunshots are uncomfortably close. It’s like the Gaza Strip out there.
I roll out the cot next to the bed, and lie there, listening to the madness outside, not really so different from the madness inside.
Two months before, Patrick had been diagnosed with IgA nephropathy, or Berger’s disease. IgA nephropathy is an autoimmune disorder in which the IgA antibodies build up in the kidneys, damaging them irreparably. There is no cure for it, though the progress of the disease may be slowed down with diet and medication. The disease has also been known to go into remission, but 25-30% of sufferers eventually experience total renal failure.
At the time he was diagnosed, Patrick had about 34% functionality left in his kidneys, or Stage Three Renal Failure. Dr. Alexis Thomas, his nephrologist, put him on a strict low-sodium, low-potassium diet and a drug cocktail: immunosuppressants, blood pressure medication, iron supplements, steroids. We got one of those giant plastic pill-organizers that you see old people use. There was no way to know how quickly the disease would advance, if at all. He might hover at Stage Three for months or years. But what we did know is that he would eventually have to go on dialysis and seek a transplant.
When they admitted him to the hospital on December 31st, he was at 14% functionality, or Stage Four. By February, he would be Stage Five, or End-Stage Renal Failure. There is no Stage Six.
At Christmas, Patrick could barely walk up stairs. Just going from the bedroom to the living room left him short of breath. He had no appetite. He threw up a lot. He was all puffed up from water retention. His hands swelled. His feet were double their normal size, so he couldn’t wear shoes, just slippers. His hair was falling out. He had developed a buffalo hump from the steroids. He shook. We couldn’t tell where symptoms ended and side effects began. The doctors played with his prescriptions, his dosages. He got sicker. They played around with them some more. He got worse.
Yet, despite it all, he had tried to continue working. He was a customer service rep at the T-Mobile call center in Lenexa. He was at work that New Year’s Eve when he almost passed out. His supervisor had offered to call an ambulance, but he’d refused. They called me instead, and I went to get him.
It’s amazing that I didn’t wreck the car. I was teary-eyed and hyperventilating slightly, trying to stay below eighty on the highway-- hell, trying to stay below ninety. When I arrived, I remember how small he looked, bundled in his coat, waiting for me outside at the entrance of the office park. He hadn’t even had a break yet, and was holding the sack that contained his sad little lunch. He was paper-white and dizzy. As he got in the car, he dropped the bag, and joked, “The peanut butter is down! I repeat, the peanut butter is down!” That remark both cracked me up and served as a welcome balm for my ragged nerves, so I was able to drive much more slowly and carefully to the hospital.
In the ER, his blood work showed his hemoglobin count was six. A normal male’s is around fourteen or fifteen. He would need a blood transfusion. But before they could give him a transfusion, they would need to strip the potassium out of his body. The kidneys filter potassium and his, of course, would not be able to handle the potassium levels present in the donor’s blood. Then there was the larger question: where was his blood going? Internal bleeding, obviously, but from where? That one wouldn’t be answered for several weeks.
Dazed, I signed all the forms releasing the hospital to treat him. When I got back to the ER room, he was sucking on a nebulizer-- Albuterol, like they give to asthmatics, only in his case, it was to purge him of potassium. There’s only one way to rid the body of potassium. You have to excrete it.
They quickly moved us to our room on the fifth floor before the Albuterol got a chance to kick in. Inhaling it like that, it hits the blood fast.
It was as bad as you might imagine.
They kept him in the hospital for eight days. They ran every kind of test imaginable, trying to find the source of the bleeding. Both an upper and lower GI, which called for fasting, enemas, disgusting laxative drinks by the gallon, and of course, anesthetic, which made him throw up; some sort of scan that required him to drink barium; and a pill cam. None of the tests revealed the bleed site.
He was released briefly, only to go back less than a week later after almost passing out again. He needed another transfusion—this time, seven units. He was hospitalized for fourteen days that time. Finally they determined that he was experiencing micro-bleeds—little ruptures smaller than paper cuts along the GI tract, a result of uremia, the build-up of toxins in the body. The problem was compounded by the fact that kidneys are what stimulate red blood cell production in the first place, so he does not produce blood at a normal rate, and was thus not able to make up for the blood loss. He needed to go on dialysis as soon as possible. But the soonest we could schedule surgery for his catheter placement was April.
The days and weeks became a blur of emergency room visits. I don’t know how many times we went to the ER between January and September of 2009. I stopped counting after the eighth. We got to be on a first-name basis with most of the staff. He needed at least one more transfusion that I can recall. The other times were for other complications arising from uremia and his weakened immune system—blood pressure fluctuations, high fevers, potassium build-ups. He was given periodic Kayexalate treatments, a drug that, like the Albuterol, stripped his body of potassium—special K, we called it. Whenever he took it, he’d spend at least two days on the toilet. When the dialysis catheter was finally put in, he developed an infection, and had to go right back into the hospital for almost a month.
The TV mounted in the corner is pretty nice, actually. We don’t have a TV at home. We watch nature program vignettes, all passion plays and high drama and operatic occurrences, swelling flowers in Madagascar like fat-lady bosoms on arias, mother humpback whales nursing their young, and father penguins in priestly black. And of course, cheetahs eternally bringing down by the throat loping gazelles. We all think of gazelles as graceful, but not at the stumbling moment. And anyway, who decided the cheetah was any less elegant? Who decided there was anything elegant at all in nature? This is nature, right here, indelicate and undignified. People come and go with clipboards. Others bring potted plants with bows. We are buoyed, chatty at company, but after they leave, we sit and stare blankly at each other.
Phlebotomists make the rounds at least twice a day, collecting samples in vials the size, shape, and color of Tabasco bottles. One an old woman, older than you'd expect a lab-worker to be, lined, stooped, moves slowly. She wears large glasses that reduce her eyes to specks, yet somehow magnify the yellow and the veins. She always asks to borrow my chair so she can seat herself beside the bed as she draws the sample, her hands trained in a lifetime of patience. Then there’s the impudent younger technician who calls you dude, and jacks the bed up to its maximum height as if you were a Trans Am he was working with and not a body, smelling of cigar smoke. A third wiggles the needle. Blows the vein out. Leaves you bruised from wrist to bicep. When the old-lady phlebotomist comes back she will shake her head and say, “Mr. Roberts, your arm’s tore up somethin’ awful.”
The man down the hall, we’re told, has been on the ward for six months. Another is senile. He bellows all day long, calling for the doctor, for his dead wife, or simply, HELP ME. Tirelessly, repetitively, unceasingly. If I hadn’t believed in euthanasia before, I would now. You can time the progression of tranquilizers through his system—he goes quiet when they dose him, and then his voice increases in volume in direct relation to how much the sedative has worn off.
We flip the channel to a gameshow and call out answers.
In the bruise-colored night, I prowl the halls and ignore the gazelle-like looks of sympathy I get from the nurses.
I feel like I am home only to shower, change clothes, and feed the cats, who are becoming feral from lack of human contact. This house we have lived in less than a year doesn’t feel like home, though, and has an air of emptiness. I use dependent care leave from work. (Fortunately for me, my company adheres to FMLA laws. Not all employers would be so benevolent.) There is no routine. Or, at least, a new routine, of sorts, has developed. We keep a bag packed and ready to go by the door, like a couple who’s expecting. And we are—always expecting the worst.
Sometime, I think it was in June because I seem to recall that it was hot, we were sitting in the ER waiting room when a man was brought in by ambulance. They thought he was having a heart attack. His entire extended family gathered in the waiting room. Many of them were crying, anxious, desperate for news.
I look up from my book, amazed, thinking, Gosh, what is the big deal? It’s just an ER visit. Is it really necessary to bring the whole damn clan?
And that’s when I realized. Oh, yeah. For most people, this isn’t normal.
I vacillate between fury and despair. I am holding down a full-time job supporting two departments, going to school at least nine hours a semester, and dealing with all this, so any time someone complains about some paltry thing, I can’t help but flash to that scene in Reservoir Dogs, where the cop who gets his ear chopped off starts blubbering, “I’m fucking deformed, I’m fucking deformed,” and Tim Roth’s character, who’s been gut-shot, rears up and spits, “FUCK YOU! FUCK YOU, I’M DYIN’!” Several times a day, I have to resist the urge to whirl around and scream at someone, “FUCK YOU! I’M DYIN’ OVER HERE! DO YOU HEAR ME? I’M FUCKIN’ DYIN’!”
So many people do actually want to help. There are co-workers who are, at the very least, tolerant, and many who are deeply compassionate. My professors are stellar, some even exempting me from any work or quizzes I didn’t feel I could complete, and one even let me skip a final. My mother comes by and cleans my house for me once a week, checks in on me. My best friend spends several nights with me at the hospital, and later helps clean my basement after it floods. People visit and send flowers. My neighbor takes out my trash. When spring comes, one of my co-workers sends her son over to mow the lawn. Patrick’s cousin cleans the gutters. My parents’ neighbors send money. My brother-in-law sends money. Father Oldani says mass for us. We are on more prayer lists than I can count.
Whenever I am asked about God, I tell people I am split, 80-20. About 80% of the time, I believe God exists, but I don’t like Him very much. About 10% of the time, I think there is no God, that the universe is just random and cruel. Then there’s the 10% that I don’t like to admit to—when I believe it is possible for a God that exists who is paying attention: the coincidences that are too large to ignore, the acts of largesse. Evidence, in other words, of His presence in the world and, most of all, in us. And then I think it is possible to have a relationship with the divine, and if I spend my life in the margins of that 10%, it will not have been a life ill-spent.
Life teaches continually that there are no certainties. Every goddamn day is a sucker punch. We can only hope, moment to moment. It’s like recovery, living for the now, or enforced Buddhism—being Zen, going with the flow, letting go of earthly possessions because, you see, none of this matters. Least of all the body.
But there are days when I am so greedy for life. Gentle sun. Breeze. Catching cupfuls of air in my hand out the car window. Writing, writing, writing.
Sometimes, I just feel disassociated. Other times, I feel hollow, like God has scooped me out. Light passes through me. I am filled without weight, the fullness of a soul in expansion, and 10% is starting to feel like an awfully big margin.
New Year’s Eve, 2008, the beginning of a revelation. The revelation is this: you never know what you are capable of, what reserves you have. Then one day, you help your husband on and off the bedside commode because he's too weak to walk the five steps to the bathroom. Hold the bedpan for him. Flush the used toilet paper when he's through.
You never knew.
This might be a cakewalk to someone who’s changed a diaper, infant or adult, but I never have. I’m not a mother, not a caregiver, no Florence fucking Nightingale. And this is the hardest thing I’ve ever done. Having to wade into the indelicacies of flesh, the indignity of suffering, the unfairness of it all. A childish voice in the back of my head keeps shrieking, He’s only twenty-nine, only twenty-nine for Christ’s sake. We’re too young for this.
Patrick once worked with a woman who had been married for over thirty years. She told him that, after a point, you stop being friends or lovers. After so much shared history, she said, you’re really more like battle buddies, and she was absolutely right. This is Fallujah and I’m dragging his poor torn body through a minefield. I hope I can do this.
Outside, the guns go off, and the firecrackers. Joy, abandon, revelry, crisscrossed with criminality, helplessness, defiance, despair, desperation. Outside, they rail against their circumstances every night except tonight, when the possibility of a fresh start, or at least, the possibility of divesting oneself of the past and all of its horrible fuck-ups, is in the offing. A possibility distinctly deserving of savage celebration.
But inside, you can’t think about these things. You can’t think about circumstances or fate, fair or unfair. The cheetah and the gazelle are equally elegant, equally indelicate. You can’t think about past or future. All you can do is this, what has to be done.
Wash your hands and go on. There is precious little that cannot be washed away.
I towel my hands dry, marveling. This is all an exchange of fluids: mother's milk, marriage ceremonies end on a note of saliva, childhood friends rub the oozing skin under their scabs together, declaring fraternity for all time, embalming fluid enters the body's chambers.
The nurses call transfusions “hanging blood.” If I weren't already struck by the power of fluids, I'd be bowled over by that naked terminology. Nothing can prepare you for the sight of those bags. You know blood is red. You know. But the spots left on the cotton balls in phlebotomists' wake only hint. Valentine's Day red, Valentine's Day masscare red. The sight of them hypnotizes you, the way that red sings its way through the no-color, meant-to-be-soothing taupes and mints and lilacs of the hospital wards, that dreamlike way it mixes, swirling and diffusing through the clear liquid in the tubes, passing through the tubes themselves, and then into the veins.
Cheerful orderlies bring bowls of broth he is too sick to eat. There are sponge baths and oils, no ritual gone from the act of banishing the unclean. The Catholic buried in the back of my consciousness is stirred at blood, bathing, oil, a woman camped out at the foot of a dying man, Golgotha, the Romans aiming kidney shots at the Messiah.
When I finally do sleep, I will dream of the clinic across town where donors whisper, “This is the cup of my blood,” before they lie back and sip juice.