[This is the true story of my life. I'm posting it in installments. The final installment will include post-script-type thoughts, with acknowledgements to those who've helped me along these last two years, as well as those who've been an inspiration. I hope you enjoy reading. -dp]
Chapter 1: http://www.jehovahs-witness.com/6/155373/1.ashx
Chapter 2: http://www.jehovahs-witness.com/6/155429/1.ashx
Chapter 3: http://www.jehovahs-witness.com/6/155490/1.ashx
Chapter 4: http://www.jehovahs-witness.com/6/155940/1.ashx
Chapter 5: http://www.jehovahs-witness.com/6/156292/1.ashx
Chapter 6: http://www.jehovahs-witness.com/6/156570/1.ashx
Chapter Seven: White As Snow
The LA County hospital is one of the biggest and busiest in the nation. Its art deco concreteness and monolithic proportion makes it seem like a massive, communal tomb, an entrance into the underground.
Angela parked in the ER turn-around area and called an assistant to help me inside. He brought out a stretcher, and I was pushed in. I went through several different phases of assessment, eventually finding myself in a cubicle of curtains in a big room with a tall ceiling. A succession of more experienced medical staff cycled in and out. By this time I had another IV in my arm, draining in some other kind of fluid. I had to explain to everyone about my blood decision, as well as my firmness in refusing it. Most, if not all, seemed to take me seriously. Fluids were drawn, tests were run, and it came up that my hemoglobin was a little over five, out of what should have been about sixteen. Transfusions, they said, were common around seven. This impressed me little, as I knew before it was all over I would bleed again and that it could only go lower.
The urgency with which the medical staff treated me seemed to be commensurate with presentation of symptoms. I was shifted around to various hallways and floors, moving from one department to another. It was the middle of the night and most of their doctors were gone or sleeping in some closeted bunk bed somewhere. Eventually I was sent up to the otolaryngology department.
The place was empty. I lay on my stretcher out in the hall, trying to get some sleep, knowing I would need every bit of energy I could get. Angela sat on a chair below the stretcher, slumped over, and fell asleep instantly. A few more hours passed.
Later, I gingerly crawled off the stretcher and tried to walk. I found I could keep my balance pretty well, and to stand up felt better than lying on my sweaty backside. I was in full (or not so full) hospital gown regalia, so I stepped around with my back to the walls, carefully steadying myself. Finally, someone came out of the inner sanctum of the department and asked me in.
The examination room, like the lobby outside, was completely empty. A metal table gleamed under the florescent lighting, on which I was asked to lie down on. The sole person present was a doctor in his mid-thirties, obviously having just been wakened from his slumber. Bleary eyed, he peered into my left ear with a long telescope, mumbling that he could see the tumor. He didn’t want to poke about in my nose for fear it would cause bleeding. He mumbled a few more things and then left. I returned to my stretcher to find Angela gone. A few hours later I saw her again, this time in a large ward where there were about ten people on beds trying to sleep.
Morning came, and a host of new doctors came to see me. One jovial man managed to get an emergency “compassionate use” order of a new type of artificial hemoglobin the FDA was currently in the process of approving. When I first saw it, it looked just like blood, and I admitted I was skeptical. I looked at it closer. It was brownish, rust-colored, not exactly like blood, and I eventually let them hook it up to me. I laid back and watched the bag slowly drain into my arm, feeling nothing. During this process, I had to be monitored as per the requirements of the special waiver, so a young intern sat at my side, reading a book. I had my Bible with me, reading it, and eventually he asked me why I didn’t accept blood. Although very polite, he seemed incredulous, like my decision didn’t make any sense. I read him two scriptures, one from the Hebrew Scriptures and one from the Greek, showing how God’s commandment to abstain from blood was a constant, unchanging requirement of his followers. He said that it sounded like to abstain from blood just meant not eating it, like how the Jews only ate kosher foods. I explained that if God says to abstain from something, I wouldn’t eat it or inject it into my veins. He fell silent and I went back to reading my Bible.
It was night again; Angela was again at my side, chatting in her perpetual tone of optimism. I was feeling noticeably better than the day before, although I had not gotten a wink of sleep. My hemoglobin was still very low, but I could get up and go to the bathroom if I wanted. (This was a glorious luxury many others didn’t have; I got used to seeing bottles of urine handed around and emptied nonchalantly by the nurses.) Angela told me that my mother and step-father were on their way, that my brother and his wife were trying to get a plane ticket out from Bethel, and that my brother-in-law had spent the night down in the cafeteria. In addition, brothers from the local hospital liaison committee were going to be coming soon. I stayed quiet, happy to just hold her hand and listen to her speak.
Food came in, and I soon had my metal tray with all sorts of different foods on my lap. We prayed. I ate the pudding, the bits of chicken, the green stuff, and then eyed the bread roll. I bit into it, and as soon as the first bite was on its way down my throat, that familiar gushing of warm fluid started descending. I leaned over my food tray and the blood started filling the metal partition. Angela got up to go call someone, but I held on to her hand and pulled her close. I asked her to wait, to just give me one last minute to see if it would stop. She closed the curtains around the bed.
I knew this was it, this was my final moment of control, and that if it didn’t stop I would have to give everything up. It was also the first time I bled in front of someone. It felt like I was naked. I didn’t try to hide it, rush away, and conceal the fact that my life was draining away. The metal tray compartment was filling and it wasn’t stopping. I nodded my head, and she left to go get the doctors.
At this point, staff chose to run instead of walk down the hallways, to shout instead of wait to be noticed, and to crowd the ward, asking me questions while wheeling me off into the other room. They lifted me onto the gleaming metal table, propping my back up. Suddenly everyone vanished, running off to go get someone else. For a few seconds the room was completely empty; I lay on the cold table in my thin white robe, the redness streaming down my neck. I heard scuffling in the hallway toward the entrance, the voices of Angela and my step-father shouting; something about no blood. Two female nurses swept back in and began to try to stop up the bleeding, plugging things into my nose and mouth. One jumped up onto me, holding everything into my face as the other one hooked tubes into the IVs in my arm. The nurse on top turned to shout for someone and for a brief moment my eyes were blinded by the light above. My vision started to close in—a slow, spreading blackness around the periphery—until all I could see was the outline of the nurse’s head and the light above.
Then nothing.
Time and space were no longer subjective states of experience. I would see someone pick up a tool or push a few buttons and then see them do it backwards. I would be told something and then hear it again like it hadn’t been said before.
I was being wheeled down a hallway, two doctors running beside me, one of them pleading with me to take blood. As he begged, I briefly came out of my stupor—pricked by his tone of voice—and noticed tears in his eyes. I was filled with an overwhelming sense of love for him. I tried to reach for his hand, mumbling that I knew it was hard for him, that it was hard for me too, but that I wouldn’t take any. A pained look came across his face and he looked away.
From then on, I was either in the unreachable darkness of unknown space, or partially awake, sweating and crying like a child, terrified of slipping back into my dreams.
A high tower, dusty white, like the stacked vertebrae of a dried spine, sculpted into a lonely spire.
I was in an upper chamber with tall narrow windows all around the room, encased in a metal cage that was pressed tight against every inch of my body. I could see through one of the windows all the way down at the washing blue tide crashing against the rocks below. There was a marina with sail boats, jostling about in the water, seagulls flying above them.
Suddenly, my view was blocked and an immense black slab swung in front of me, inches from my face. The hazy outline of a skeleton glowed within, getting clearer and brighter. Then I blinked. It moved, and then I knew the bony outline was my reflection. I was dead, but still being processed in some manner.
The room gradually became filled with light, like the brightness outside near the sail boats below. A clang erupted in the back of the room, behind me, and a loud buzz began, vibrating through my entire body. A door in the side of the room opened and something walked in. It was another outline of someone or some thing, its depth filled with the crystalline blackness of obsidian. It held a scalpel knife that had a red point, like an infrared beam. It brushed up against my face, took off the cage, and lifted its knife to my cheek. It pressed in, blood flowed, and the crushing stench of death’s breath permeated the room and every cavity of my body with the scent of wet ashes and bleach.
Blackness, silence.
At first imprisoned, I managed to escape.
I was on the ground below the shadow of the bone-white tower, leaping over rocks, trying to reach the sail boats in the little marina...
On one of the boats, scrambling around its top, trying to find a way in...
The salt air, the seagull’s flapping wings, the lapping of the little waves, the rocking of the boat.
Refrain.
My body was in a wheelchair being pushed though an underground maze of tiled halls. One of the wheels squeaked and was a little lower than the others, tilting the chair at an awkward angle. This I saw as a ghost preceding the body being transported in the chair. My face was grey, drawn, and my neck had a plastic apparatus sewn into it protruding about two inches. My ghost stopped as my body was wheeled past, getting a close look at my dead-looking eyes. It then saw two people sitting on a wooden bench against the wall. They started to get up, like they were going to say hi and ask how I was doing, but my body continued past them, not alive enough to acknowledge their presence.
I awoke lying on a blanketed table, lights shining directly into my face.
“Daniel. Don’t move. You need to be very still, OK?”
I awoke again. This time I felt that my mind and body were relatively interconnected. I was painfully aware that my breathing wasn’t my own. A machine breathed beside me; with its mechanical movements my chest rose and fell, without my control. Not enough air, then too much… never enough, never right.
I was being lifted from bed to stretcher, then to another stretcher, and then into a vehicle. Conversations were carried on around me: people laughing, joking, talking about television shows, their children, school, and then maybe something about one of my IVs, or to watch out for my urinary catheter.
Then bumping along in the vehicle—an ambulance—its siren blipping occasionally as it twisted through streets. There was no more machine by my side; a nurse held a plastic bag in her lap, giving me breaths of air with each squeeze of her small hands. I was suddenly aware that my entire life was in that little bag on her lap. I looked into her eyes, pleading for attention. The ambulance bumped and shook some things loose. I snapped out of my mellow reverie and lifted myself up in panic, not being able to breathe. I reached for the bag that she forgot to keep squeezing as things jostled around—grabbed it greedily and began squeezing it.
I was being slid into a huge, cylindrical block of metal and plastic, on a breathing machine again, and descending back into that terrifying drugged sleep. My head felt like a washing machine as the machine hummed and turned above me. All the fluids in my skull seemed like they were being pulled around, swishing through my brain and sinus cavities.
Then another extraordinarily uncomfortable ride when it was done, again bumping around in the ambulance. When we arrived back at the main complex the nurses and attendants lifted me up, pulling me out on the collapsible stretcher, except the stretcher’s legs didn’t extend properly and it swung down and hit the pavement, my head bouncing on the metal railing.
I lay on a bed in my own glass-walled room, in intensive care. A dozen different machines beeped and whirred behind me, and five IV tubes stuck out of my arms, each one carrying a different fluid.
I was still sure that I was going to die. Ever since I heard Angela’s voice shouting in the hallway just before I blacked out, I had resigned living and being able to marry her. The tragedy of it was now in the very front of my mind, but I had receded back, way back, and it didn’t hurt anymore.
I fell into my night terrors, occasionally emerging for a brief minute as a nurse carried out some procedure. I loved the nurses and their assistants; they were the stewards of my body, preparing it for death. I felt ashamed when I couldn’t control my bowels, hiding my face in my hands. One of the nurse’s assistants always talked to me as if I was fully sentient, leaning in close, speaking directly to me. Her round, stunted face was exuberant and smiling as she said how beautiful my eyes were, that they had gotten huge and blue in the past few days, like a baby boy.
I started to sense more and more people coming into the room with increasing regularity. I felt my mother’s cool, infinitely soft hand on mine, caressing slowly, calmly, and her soft voice murmuring. Then Angela’s kiss on my check and forehead. Hands on my shoulder. Different voices. Feet shuffling.
I cycled in and out of consciousness with more regularity and with more vividness. I couldn’t speak, so I was given a tablet with a pen and paper to write on. My head was packed with rubber pellets and iodine-drenched gauze. This, in conjunction with being intubated, meant I couldn’t swallow and that my oral and nasal cavities were filled with putrid ooze. For days, I had to cope with the constant feeling of a perpetual gag. Eventually able to communicate this in writing, I acquired a suction tube that I could use with one of my hands, sucking out the vile phlegm whenever I emerged enough from my drugged sleep.
One time I awoke with my room filled with young medical students, standing very rigid as an older doctor spoke in a commanding voice, explaining some kind of ethical complication that my case presented.
Another day or so were spent inside milder and less vivid versions of my dreams. I awoke again in the upper room in the tower, my skeletal figure gleaming back at me in the obsidian mirror. The room was dark now, and a female doctor leaned over me, painstakingly adjusting something above my face. My head was in a papier-mâché mask with slits for my eyes and nose. She told me to be perfectly still, that is was extremely important. I lay quiet; glad to have a human brushing up close against me.
Then one day I was free; I could breathe on my own. A doctor had come and, while peering into my mouth, one by one removed the rubber pellets that filled my throat. I was quietly ecstatic as each one came out; my mouth, throat, and nose finally my own again. I was eventually weaned off whatever drugs they had me on, and disconnected from most tubes. I could write my requests and comments on the pad with more coherence. Then a nurse came in one morning and, while I was waking up slowly, deftly and superbly yanked out my urinary catheter. So that’s how they do it, I fleetingly thought, as I winced in a glorious flash of pain.
One day my brother entered the room, taking my hand in his. All the sudden I wanted to get up out of bed. The nurse was hesitant as I tried to lift myself, but I eventually turned and slid out of bed. She put little foam booties on my bare feet, and I held onto my brother as I stood up. We walked out of the room very slowly together as I glanced back and saw green streaks where I had been lying on the bed.
I wrapped my arm around his waist, holding on, taking each step one at a time as he helped to steady me. It was one of the most liberating experiences I’ve ever had. I could breathe, I could walk, and only one little machine trailed behind me on wheels, connected to one of the IVs in my forearm. Doctors and nurses looked up with big smiles as I walked by. I made it all the way down the hall to the end of the intensive care unit, and then we turned back. By the time we returned to my room I was completely spent. My bed sheets had been replaced with fresh clean ones in the few minutes I had been away. This was a detail for which I would have tipped a large amount of money if it had been that kind of situation.
I was now informed what was happening to me. The tumor had bled uncontrollably that one night; they had to give me a tracheal intubation so that the bleeding could be stopped with tight packing inside my nose and throat, against my upper palette. They then performed an intratumoral embolization, feeding a micro-catheter into an artery in my groin, all the way up the length of my body inside my aorta and into my carotid artery in my head, and into the tumor itself, feeding some kind of inert plastic material to detract its vascularity. While the procedure went well, shrinking the tumor and preventing immediate bleeding, it was still too big to resect without being able to transfuse. I had been given emergency doses of radiation, and then regular, daily treatments once they devised proper targeting of the tumor. This is what caused that penetrating smell, so much like wet ashes and bleach. For thirty seconds or so while the gargantuan radiation machine buzzed, invisibly slicing into my head with cobalt-60 gamma rays, the most unearthly smell of dying cells filled my senses from the inside out.
But none of these things addressed my dangerously low hemoglobin level. During the most careful moments of my treatment my heart was beating fast and hard enough to fail at any moment. But no, I wouldn’t take blood. There were a few things they had tried earlier, like the artificial hemoglobin, but none had worked like they hoped they would. There was, however, one thing they had just started me on, a new drug called epoeten alfa, or EPO for short, which was derived from the blood fraction albumin.
I had previously approved any blood fractions in my DPA, as the Watchtower Society’s stance on them was to leave it to the consciences of individual Witnesses to accept them or not. The Bible, the Society said, only talked about whole blood, and not all the dozens of fractions. Since it didn’t address these technological details, their interpretation permitted their use. Even though albumin was engineered from donated blood, people who never donated could receive the benefits of it. This lay in the back of my mind, but it wasn’t something I contemplated fully until later.
The effect of epoeten started slowly, but then rapidly increased my hemoglobin level, some days by entire points. I welcomed the needle when it came time to inject it into my arm. Commensurately, the radiation was beginning to shrink the tumor.
Eventually, it came time for me to leave intensive care. I was stable enough to move to a ward with four patients in it on the fifth floor. I was moved into a bed in the corner of the room, up against the white-washed concrete walls and a huge window looking out on the grey city.
I would emerge from my bed whenever I could and sit in a chair next to the bright window. Sitting in warm wash of light in my white robe, my eyes rested on the simplest of things: paint chips curling up on the edge of the window sill, fuzzy patterns of filtered light on the tiled floor, the hands of the clock on the wall.
I was completely empty. Every one of my worries, all hopes, all dreams, wiped clean. I had no fear of slipping back under the shadow of the white tower in my sleep. I remember sitting on the chair below the window, my hands in my lap, the tracheal tube tied into my neck, breathing in and out easily and freely as hours passed like minutes.
My strength returned slowly. One time Angela came into the ward in the evening, wearing a certain red dress that wrapped her figure very nicely. She helped me up and we slowly walked back and forth across the room. A little radio played near the nurse’s station, and I suddenly had the urge to start dancing for the very first time in my life. As the sunlight descended, bending long shadows across the floor, we danced quietly in the center of the room, barely moving, as I rested my weight against her.
During my stay at the hospital, I had more family members and friends gathered in one spot than at any other time in my life. Of course, most of them were there when I was unconscious. Throughout my stay in the ward five stories above, descending daily into the underworld for radiation treatments, my family, friends from the congregation, and brothers from the hospital liaison committee all had their own revolving community in the cafeteria. Earlier, when my condition was worsening and death was an imminent possibility, there were more people present. As my condition got better, they started to leave and return to their own lives. I never even saw my father, although I was told he came sometime during the first few days.
For some reason my mother always felt it important to remind me who did the most or who paid how much for certain expenses. At the time, I was confused as to why this mattered. It seemed most were there to support each other, and not me. The only person I really wanted was to see Angela. It felt like there all these people who would come between us, not to mention death itself having threatened to keep us apart. My mother and brother even had the gall to counsel Angela for the flattering dress she wore, saying that it wasn’t appropriate as we were still unmarried. Through all that we had been through, their outlandish prudishness survived to add one more irritation. When it came time to see who would take the next visitation period, my mother had rights of first refusal, and rarely gave up her spot. However, as my condition improved and visitation rules relaxed, this became less of an issue.
One time I took a short walk with my mother down the hallway. She was hunched over; having recently taken up a cane. Gradually, she started walking more decrepitly than I. Eventually, by the time we reached the end of the hallway it felt like I was helping her walk. I don’t think she knew how to cope with having a son who was less healthy than her. Perhaps in handling this trauma her mind convinced her body that she was old and sickly.
Surviving as I was, being woken up at all hours of the night, barely getting any sleep, undergoing the daily radiation treatments, I felt like I was in a sort of purgatory. I had been pulled back from death, but I wasn’t quite among the living yet. As I gathered more strength, I would sneak away and take walks down the hallways, as far as I could go in all directions. One time I rode an elevator down to the main lobby and stood against the wall, looking out through the glass doors at the normal world outside.
I couldn’t speak with the tracheal tube still in my neck. I would listen to who ever was talking to me and then write a response if needed. These conversations often felt like a sort of shared meditation, where the things that would go unsaid in normal conversations were the things understood the most.
I was again moved to another ward, on another floor. This one had about twenty men in it, all recuperating from different illnesses. Despite the added noise and commotion, it was comforting for me, since I was now among those who had stronger links to life, not those whose hold on it was tenuous. I think we all found it a little reassuring to be around so many of our own ailing, but reviving, species.
Things continued to change in meaningful ways. My nightly blood drawing visits halted, and I started getting different food. Also, Angela came more often, fewer family members remained downstairs, and last thing we heard my hemoglobin was over seven points, back up from a low of around three.
We hadn’t been updated by any doctors about my estimated discharge date, so one evening we decided to walk down to the station in the hallway. Come to find out, I had been lost track of for a few days, and they had become confused over which doctor had been assigned to my case. The doctor on duty spent about four hours going over all my paper work, recording a bunch of stuff that never had been, and tracking down who had been in charge of me and how it got all mixed up. Finally it was resolved, but he didn’t know how long it would be until I could leave. He said that the doctor assigned to me now would be there in the morning and a determination would be made then. I told him that I hadn’t had more than a couple hours of sleep per night for the past two weeks, that I needed sleep more than anything. I knew my condition was quite stable, that all that was happening now were my daily radiation treatments and that I could take these as an outpatient. He said he couldn’t discharge me without a final examination from the doctor the next morning.
Angela and I drew aside and talked. I told her that there was no way I was spending another night there, that I would rather go sleep in her car. She got on the phone and called my brother-in-law to see if we could drive back to my sister’s place. He told her that they weren’t prepared to have me come, but that he would get a motel room for me. We told the doctor that we were leaving. He didn’t try to talk us out of it, but had us sign forms that said I was leaving against orders. The nurses gave me a bag full of gauze and bandages; by this time my tracheal tube had been removed and the gaping hole in my throat was closing up by itself. It required clean dressings, and I had since learned how to change them myself.
Angela brought in a paper bag full of the clothes I first wore to the hospital fifteen days prior—what seemed like a lifetime ago. I picked them up in my hands and smelled them; they seemed like the clothes of someone else. I put them on and they draped over me, too big for my shrunken midriff and wasted muscle mass. I had lost forty pounds since I first arrived.
As we gathered what few things I had around and under my bed the other men in the ward noticed I was leaving. One of them asked me how long I had been there, and what had been wrong with me. He gave me thumbs up when I told them we were leaving. One by one, they all waved and said goodbye. I never learned any of their names.
We went down an elevator, down a few hallways, and then there it was: the exit doors leading into the parking garage out into the Los Angeles night. I was just about to emerge from a place which I had thought I would never leave. We walked as fast as I could, my feet shuffling along in shoes that felt too big. There were three small steps that led up to the door. I could hardly lift my own weight up the first step, and so grabbed onto Angela. I let her help me up the few steps until we were finally out into the night air. It wasn’t fresh, but I didn’t care. It felt like heaven to me. Not only could I breathe in fully, but I could smell everything that mankind built up, all of it real and living—breathing—despite the stench of its exhalation.
I sank myself into the passenger seat of her car and rested my head. She put things in the trunk, started the engine, and we then drove away in much the same kind of silence as when we arrived two weeks prior.
We drove an hour or so and pulled into the parking lot of the motel near the ocean. I was carrying my bag of things across the small parking lot toward my door when I stopped and had to set them down. I asked Angela if she could carry them for me.
We parted in the doorway of the motel room, she kissing me tenderly as I buried my nose in her hair and breathed in.
I took my clothes off and looked at myself in the mirror. My ribs were protruding, my face drawn and weathered, but pink. I removed the dressing around my neck and examined the hole, incredulous that it would somehow heal itself without being stitched back up. I then took a shower as best I could while not allowing water into my trachea. I came out and examined myself again, stepping carefully across the tile like an old man. My weakness was expected: I had contracted both pneumonia and bronchitis while in intensive care, and was also developing an extremely painful bout of thrush from the throat packing I underwent. A thick film of body grime was still on my skin, so I went back and took another shower, scrubbing until it hurt.
I got in bed and turned on the TV. Everything seemed so different; all the shows seemed like they were in a foreign language. I masturbated, relieving the tension that had built up throughout my hospitalization. Then finally, I slept.