Excerpt: The Blood of the Arjanes

My immune system went to Hell and left me to die.
Over the past five years, I have been in and out of hospitals more times than I care to count, certainly more than I could faithfully chronicle. I’ve contracted almost forty percent of the opportunistic infections that define my syndrome, and they have left me with a number of indignities: skin bespeckled with red and purple sarcomas; a wasted frame eighty pounds lighter my skin like stretched vellum; an enraged and unruly stomach that has long forgotten the meaning of appetite; bowels as unpredictable and violent as a live volcano; demented enough that holes were appearing as rapidly in my memory as pot holes form on Chicago city streets in the winter; bone mass so low that I once fractured a rib in bed while doing nothing more than turning over in my sleep; and fatigue one might feel if they ran the Boston Marathon, and after crossing the finish line, turning around and running back to the starting line.
I’ve knocked on Death’s door many times, lain bare at his doorstep, gasping, waiting for him to answer and take from me my last breath.
That door has yet to be answered, as has this question: when will it end, this intolerable stasis of living?
While the prospect of contracting any of the remaining opportunistic infections didn’t intoxicate me, if it meant that Death would finally acknowledge and answer my call, then bring ‘em on.
I had issued that challenge only in thought for months, but when I finally spoke it aloud, and my lips curled at the invocation of that provocation, there was a tightening in my sinuses, a pull that began below my left ear and raced like a ricochet to my eye.
With thy wishes take care.
Ah, such fortune. My sinuses had become a breeding ground for the fungal infection aspergillus. It wasn’t long before my sinuses were so full of the fungal infection’s waste products that the area around my left eye became swollen, the size of half a baseball, as if someone had given me a shiner minus the shine. Paul rushed me to the hospital and I was in surgery in less than an hour. They drained my sinuses and the shiner was gone. That wasn’t a cure, though; just some very effective Drano.
Sometime during that hospital stay, MRSA, a bacterium that coats every surface of hospitals like grass coats Scotland, and is resistant to the best antibiotics, snuggled in close to aspergillus and set up shop. Although the addition of MRSA increased the likelihood of my dream date with Death, I needed neither the extra guest nor the discomforts that accompanied it. Aspergillus et al. were doing fine on their own.
To combat MRSA, an IV med was added to my already potent anti-Daniel arsenal, and my kidneys quickly expressed their violation. My urine left the purview of yellow and assailed the steps of amber. The medications I took to combat so many other things launched a cooperative assault against my liver, creating enzyme levels that would make even the most determined alcoholic jealous. Twice more my sinuses demanded draining, and I spent both recoveries in the surgical ICU for cardiac patients. The physicians monitoring my care allowed Paul to be with me in the ICU despite strict rules barring family members because when he wasn’t there, I was frantic, pulling on my IV tubes, my breathing tube, and thrashing about as if I were in restraints and desperate to break them. I didn’t remember any of it. Not the tubes, not the thrashing, not Paul.
Paul said that during one particularly difficult period where they nearly strapped me down, I sat up and kissed him firmly on the lips, throwing my arms around his neck as if I were trying to hug him, though he says I merely hung from him like an unstuffed scarecrow until my caretakers lowered me back to the bed. My eyes were closed when I kissed him, however, and with a sly smirk he suggested that perhaps I was thinking of someone else.
Silly man.
When I was home, nurses came to my house every day to tend to my many daily needs. Most important was the sterile—latex gloves and nearly boy-in-the-bubble sterile—changing of my IV feeding bag. The “food” was delivered through a permanent catheter inserted into a vein in my chest. If there was an absence of sterility, any pathogen could take that direct route to my bloodstream and that would be that.
There were certain things I had to do for myself. I complied, if only because doing so gave me comfort. One such task was for the treatment for my sinuses. I boiled salt water on the stove, hung a towel over my head, and did my damndest to inhale the steam through my nostrils. When my sinuses felt loose, I expelled into a Kleenex and marveled at the result: for in the Kleenex was no mere expulsion of snot. No, in the tissue was snot—a lot!—that could have stunt-doubled for mushrooms.
My parents flew into town after one of the surgeries. I hadn’t told them of this latest ritual or its outcome. Before dinner one night, I plated the waste product of my fungal infection, dribbled it with olive oil, sprinkled it with parsley and presented it to my mother as seriously as I could manage, which means that I chuckled and snorted quite a bit while handing her the plate. To make it seem more realistic, I poured her a glass of an earthy French pinot noir from my cellar, asserting that the earthiness of the pinot would balance the mushrooms nicely. She didn’t share my sense of humor, and after throwing the plate to the floor and knocking the glass of wine on its side, she told me how vile I was with a tongue more vulgar than I knew she possessed. My father didn’t care much for it either, but instead of upending anything and breaking plates and expensive stemware, he fixed me with a stare that said, “Hasn’t she been through enough?” Looking to Paul provided no relief from my father’s stare. Paul wouldn’t look at me.
In the hospital. Antiseptic cleansers orient me.
Hazy glows. Upstairs. Throbbing.
Knock knock. Who’s there? Not me.
Inside. My left…
Arms around me, chest against mine, cheek on my cheek. Stubble. Rough. Paul.
Gentle.
Sleeping.
Soft hand on my forehead.
“Good morning, Daniel.”
Paul. My mom. My dad. Dr. Baker.
“Wha—t”
“Take your time.”
I did, and slowly focused on my doctor. He was the most optimistic of physicians, and fought for his patient’s lives almost to his death, and took every lost patient so personally that it wouldn’t surprise me if he wore a permanent haircloth under his custom tailored dress shirts and self-flagellated with a bullwhip. I could always tell when he lost a patient because he took on some of the characteristics of his patients: sallow skin; swollen, bloodshot eyes; short, crisp and pained movements; and a general sense of dishevelledness. He looked like that now. Who died?
Then: “Daniel, I have difficult news.” That sentence sounded as if it came from a broken mouth: torn ligaments, cracked jaw, shattered teeth. More words tumbled out. Toxoplasmosis. A seizure. Hit my head on the table. Concussion. Lost a lot of blood.
Ah—it was me. I was to die. This was the last offense that my body could bear.
Paul came to me then. Though I had waited for this pronouncement—wished and taunted Death for it—I cried, and Paul held me, running his hands through my hair, kissing my neck and head, and repeating, “I love you,” over and over and over. If time could have stopped right then, my beaten body wrapped in his strong embrace, I would have been content.
From that point on, when I kissed Paul goodnight, what I really meant, what echoed in my mind was good-bye, neither expecting nor hoping to wake in the morning.
My room is full of streamers and balloons and people. Lots of people. Wall-to-wall. Most were talking to each other creating an irritating din, and some had drinks and/or cake. I struggled into a sitting position, refusing anyone’s help to manipulate the bed to raise my head. “What the hell is going on?” I asked, as I fell back against pillows hastily arranged by my mother. Although my voice was scratchy and strained, it brought a halt to what looked very much like merriment, and everyone was suddenly uncomfortable, looking first to me, then down at the ground, but then all back to me.
Searching, I located Paul, and found his face contorted into a grimace of such mortification that I felt as if I’d just said, “The Queen of England is a hairy old bitch,” as the Queen herself entered the room.
Crap.
This was my “Celebration of Life” party.
I closed my eyes and tried to push aside everything that caused pain or discomfort. My success was moderate. These people, I knew most of them. They were my family and friends. Today was a celebration. I had lived a wonderful life and they had all been part of it. This was more for them than it was for me, so I forced a smile, hoping that I didn’t look like a grim visage of Death. Couldn’t somebody have woken me earlier? Washed my hair?
“I did wake you earlier, sweetheart.”
Paul?
For an hour, people formed in a line and came to me, sat on the bed with me, and we talked. We spoke never of my illness, never about anything sad. Instead, “Remember when you passed your exam—after failing three times—and were certified as an Advanced Sommelier? You sent an e-mail to everyone you’d ever known announcing it, describing in great length the difficulty of the questions, and exactly how well you did in each portion of the exam. God, you were a pompous ass!” That was the flavor of it. People laughing at my various (and apparently many) failings, and reminding me of all of them in great detail.
“Hey,” my friend John said when it was his turn to embarrass me, “what about the time that Paul found you on a weekday morning, passed out in your cellar? There were four empty bottles—right Paul?” I looked at Paul with alarm. He had told someone of this? Paul pushed through the crowd, took John by the arm, and tried to encourage his departure with a tug. John didn’t get the hint. “Well, I remember it. We were e-mailing about that for weeks!” Paul’s encouragement must have become instantly more persuasive, for John said, “Ow!” and allowed himself to be led away, with a smile and a wordless “I love you.”
So what if I opened a case of a spectacular ’96 tempranillo from Rioja, and was so moved by its gentle seduction that I drank and popped open bottle after bottle until I passed out on the floor.
They e-mailed about it for weeks?
Paul!
I could have—oh, right. Hole in memory temporarily filled. There was much more to that Rioja story, and I’ll bet Paul didn’t share the rest of it with the goofy clan who e-mailed and laughed at the sommelier lying belly-up in his cellar.
One of the nurses came in, ducking under balloons and streamers. “Don’t mind me, I just have to check a few things!” She smiled. “How are you today, hon— ”
She was staring at the urine collection bag. “Sweetie, maybe I put the wrong contacts in this morning, but your urine looks lighter.”
I grasped the bed rail and pulled myself to the left, straining to see the bag. She was right.
“It’s much lighter,” she said, looking closer. “How long has it been like this?”
“I didn’t know it was any lighter,” I said.
“This can’t happen overnight.”
That ended the party. “You can all come back anytime,” she said to my friends, and they left, waving at me and flashing reassuring smiles. Most of them, anyway. Some weren’t able to hide their true emotions, and their pain came through in the wetness of their eyes. Those I couldn’t look at.
My parents and Paul stayed behind.
“What does this mean?” my dad asked.
“No idea,” I said quietly.
“Paul?”
“He has less of an idea than I do,” I said, shooting him a hateful glare.
Paul came to me, hugged me gently, kissed me on the forehead, said that he had to go to work for a while, but that when he came back we would have our own celebration.
“Like I’d want to celebrate with – oh-ho. Okay.” Our celebration meant a 1990 Krug. And that meant heaven.
“I’ll see you later tonight then,” said I with a grin, and I even pulled myself up and kissed him on the lips.
“We’ll stay with you, for when the doctor comes,” my dad said.
Waves of fatigue washed over me as Paul left. I couldn’t have been awake for more than an hour and a half, but it felt as if I’d just played four games of basketball back-to-back. “I’m going to take a nap.”
A gentle shaking—and even that rattled me like a person made of Tinker Toys—found me in my sleep, and my eyes opened to my mother’s face a foot from my own. “Dr. Baker’s here.”
“Your urine is lighter,” he said. “Unquestionably. This doesn’t happen very often.” He looked at my chart. “I’m going to add a few tests. We should have them back tomorrow.” Closing the chart, he turned to leave, but stopped. “How are you feeling?”
“Like I’m dying.” Out of the corner of my eye, I saw my parents cringe.
“I mean pain. Do you feel like you need less morphine? The same?”
“The same, I think.”
“OK. See you tomorrow.”
Why was he so rushed?
* * *
“That has a lovely nose. I get orchids, dried fruit, and vanilla.”
“You can smell that from there?”
“I could smell it the moment you opened the bottle.”
I would pay for this, I knew. I would pay dearly. My stomach would become an incinerator, my intestines would erupt like miniature volcanoes, I would have diarrhea like lava, and whimper for hours.
I held the glass in my hand, and my grip was so tenuous that I was afraid I would spill it. To spill even an ounce of this sparkling liquid gold! I could not. All of my energy went into holding that glass. I brought it to my nose and inhaled deeply. My initial impression was correct: orchids; vanilla; the dried fruit was citrus-like; a warm, baked biscuit aroma just shy of burned.
“To what shall we toast?” he asked.
“I toast to you, and fifteen wonderful years.”
“All fifteen, though we had our off moments—you can be a monumental bitch at times—have been wonderful. These last five years?” He waved his glass, and I watched anxiously as the golden liquid splash up toward the lip of the glass, but thankfully never clearing it. “These last four years weren’t easy, but if I were given a choice I’d take them as they were. Any other way would mean that you weren’t in them.”
“Hurry up and clink my glass. I need a drink.”
He complied, and with a shaky hand I held the glass to my lips, inhaled once more the heady aroma, and sipped. I held the wine in my mouth as long as I could before swallowing, savoring the burst of flavors as they tumbled across my palette.
We drank the entire bottle, though Paul had more than I did. I’d been afraid that I might have lost my appreciation for this, my favorite of drinks, but I had not.
Much later, after the intestinal explosions, the hour in the bathroom, the half hour in a warm bath soothing my burning rectum, I lay in bed, too exhausted to think. Paul was going about his nightly ritual. On his head was a Cubs hat with a red bill; attached to the bill was a yellow clip-on flashlight. In hands shielded by latex surgical gloves he held dental tools: a thin metal plaque-scraper and a small mirror. As if his training was in dentistry instead of law, he held my mouth open, shined the light into my mouth, and used the scraper to remove a build-up of paste-like brown gook that gathered on my teeth every day. This had started last week, and nobody had any answers as to what it was. It took him fifteen minutes, which seemed like a very long time to me, but he insisted on doing it. The nurses had offered, but he seemed to enjoy it, though what there was to enjoy in that I’m not sure.
Late the next afternoon, my doctor returned.
Dr. Baker greeted Paul and my parents with a smile and a handshake, and sat on the bed, patting my leg. “Daniel, your BUN and creatinine have fallen dramatically. They were off the charts before, but now they’re – I, hm. I don’t want you to get your hopes up. This is only one thing, though your liver is looking a little better too. Daniel, this shouldn’t be happening. The nurses doubled checked their logs, double checked the supply, and they’re absolutely certain that you’ve been getting the correct amount of all of your medications.”
“So – so it shouldn’t be happening. But it is. Why?”
“I don’t know.”
“Has this ever happened before?”
“It has, but not in a case like yours. Theoretically, your kidneys could recover, if—”
“If I wasn’t on the IV med for the MRSA.”
“Right. But you are. There’s a lot that’s wrong with you, Daniel. The MRSA is still here, obviously, and so is the aspergillus. Toxoplasmosis is active. So is Kaposi’s. You haven’t gained any weight. HIV is still very, very active in your body. Your liver is better, but it’s not good enough for me to put you back on HIV meds.” He shook his head. “At any opportunity, I’ll jump in and do everything I can. But keep your expectations reasonable.”
He smiled at me. “Hang in there.”
What else was there to do? I could overdose on pills—lord knows I have more than enough in my medicine cabinet at home to knock me out—but with my luck, I’d probably just sleep for a week and wake up in a mental institution.
When Paul’s exhaustion seemed to increase, neither of us gave it a second thought; nor did any of the nurses at the hospital or those who came to the house. The stress he has endured for so long was extraordinary; I’ve never seen strength like that in my life. Even when he complained of abdominal pain and itchy skin, nothing registered. Stupid, isn’t it? After everything we’d gone through with me, you would think we would have learned to pay attention to every little thing, not just my little things.
It was pancreatic cancer. They gave him three months.
On what I was told would be the day of his passing, I climbed into bed with him, buried my face into his shoulder and lay like that for hours, moving only when my IV or his IV needed to be changed. I couldn’t bear to look at his face; it wasn’t the Paul I knew, that I met, that I fell in love with. It was a mean caricature of the man who had carried my illness on his back for so long. I touched his face, traced my fingers across it, held him as tightly as I could, and tried to make sense of things. Paul, healthy and whole, was going to die, and I, a faded shadow of my former self, would go on living.
Something struck me hard in the back of my head. I yelled out, sat up, looked for whoever had struck me, and felt for the bump that had to be there. The room empty. There was no bump.
Something struck me again.
I lost my balance and fell from the bed, landing hard on my knees, feeling bits of bone crack and shatter, yelling in protestation to the agony, closing my eyes, my hands covering my head reflexively.
My IV was torn from my hand and I felt blood splashed against my face. With a hand clamped tightly over my wound, I opened my eyes.
Nobody was in the room.
I pushed myself up, slipping in the blood that was dripping from my hand, looking at Paul. What the – ?
Pain tortured its way into my head, as if my skull was a railroad tie, and a sadist was driving a spike through it. The sledgehammer fell again and again, harder with each blow. I was aware of little else but the pain, the pounding, and the puddle of my blood collecting on the floor, blood that I was sliding in now, blood that was quickly saturating my jeans.
Hazarding a quick look up to Paul, I fell back in loathing at what I saw, screaming when bone met floor again and splintered. It was Paul on the bed, but now I saw not only his damaged body, I saw also the cancer inside of him, saw exactly how it ravaged his body, and saw that he was moments from death.
The pain in or on my head stopped as quickly as it began, and I found myself looking through the eye of my mind into a space so vast and dark that I thought I must have been looking out at the entire universe, devoid and empty of all life.
Streaks of colors—all colors of the rainbow, of every rainbow of every conceivable world—came racing from behind me, shooting ahead like lightning, all stopping to coalesce at the same point some distance ahead of me, a distance I couldn’t measure but could gauge. And there, where the colors stopped, was—something. It wasn’t a person. It wasn’t a thing. It had no form. But I sensed its existence, its essence, and each color whirled about it in shards like shattered tornadoes. As the colors came closer to it, they disappeared so quickly I would have questioned their existence, if not for a continual supply of them coming from behind me. I tried to turn, to determine their source, but could not. My mind’s eye simply stared, attempting to comprehend what I saw, to find a form within its function, and while I stared I felt it become aware of my presence.
I sensed an emotion from it: astonishment. Astonishment was great that I had the distinct impression it had never been seen before. It seemed to be as completely unable to comprehend my being there, wherever I was, wherever it was. And then it grew angry, with a voracious and destructive savagery.
It started to head toward me, slowly, and the colors adjusted their path to its movement.
There was nowhere to run. Nowhere to hide. To turn. Just: nothing.
As it came closer I smelled a putrid stench of decay as final and halting as death and a rot as permanent as the grave. I was repulsed by it; my aversion became nearly as limitless as the space I inhabited or witnessed in my mind, and acting on reflex alone I reached out my hands to keep it at bay.
I had arms? Hands?
To my mind’s eye, it was still far away, and I didn’t expect to touch it.
But I did.
When I touched it—to push it, to keep its taint from me—my hands felt as if they were pressing into compost, and I immediately withdrew in disgust, feeling violated, ordure dripping from my hands. Its astonishment grew ever greater, and its savagery convulsed and shook the foundations of my mind. I yelled as it resumed its approach toward me, and its stench grew worse.
I put both hands out again, shut my eyes to it and the colors swirling around it, swirling and crashing and shattering. I touched it again, and felt violated, as if it were trying to…enter me? Trying to…absorb me? As if I were one of the whirling, streaking colors?
Paul died when I touched it the second time, and an icicle slid through my heart. Instead of at his side, I was captivated, watching this thing approach me with violence as its guide.
Then this body I had, whatever it was if only eyes and arms, felt as if a dozen hands were pulling at me, and I heard voices calling my name, and everything disappeared; my mind knew darkness, emptiness, and a sense of loss so great it threatened to consume me. I saw the hospital floor out of a slightly opened corner of my eye as it rushed up to meet me while I collapsed, slipping in the blood that continued to pour from my hand.
I had more blood to give?
There were people in the room now. I sensed them first, heard them moving about the room second.
“He’s dead,” someone said.
“My God!” someone else exclaimed.
Hands grabbed my shoulders, started to pull me up, but the hands were torn away.
“He has AIDS. I said don’t touch him. Get gloves. Now! Go!”
More voices, more confusion, and I grew dizzy. I heard a final sentence, which began at the same volume that the others had, but which quickly faded, as if the speaker was running away from me at an impossible speed.
“Where did he go?”