I'm bringing this blog out of retirement for one last post, to apprise those of you interested in my recent near death experience. May it answer the questions that felt too invasive to ask.
During my first night in Los Angeles I turned in my sleep and felt the room roll beyond my eyelids. Laying on the yet unfurnished floor of my new apartment, I assumed the fumes from the recent carpet cleaning caused the sickening dead weight lurch. A few months later, a swim in my gym’s pool was cut short by spiraling nausea. Passing mentions to the doctor were waived off after basic neurological exams. Coupled with healthy responses to these basic tests, the temporary nature of the vertigo-like symptoms eliminated them as a serious concern in the eyes of medical professionals. I came to personify the loss of balance by giving these spells a narrative; they were antagonist that came and went, a gift of occasional relief, and as it would turn out, a curse through camouflage. The first headache showed up in the Summer. The pain blossomed, wrapping hot tendrils around every delicate surface of my brain, probing and slicing each tender, blood red alcove. This was a pain that scared my girlfriend awake and sent me to the floor crawling in search of relief. “Allergies” suggested the doctor. “Migraines” thought others. “This is not migraines” I thought, I know people with migraines, and it’s hard to imagine anyone taking a pain like this standing. This was, disrupt your life, pooling in fear of the next attack, pain. This was, look forward to vomiting mid-headache for the thirty seconds of distraction it offers, pain. But then, the headaches were just gone. The blackness you ascribe to agony feels foolish when it seems a distant nightmare by daylight. When the pain was upon me, it felt like it would never leave, and when it was gone, it felt like it’d never been. If you break your arm, you can cradle it; you can position it to bring sharp pain to a dull soreness. I know firsthand, I’ve broken both my arm and my clavicle on separate occasions, and in both cases I walked around for almost a week assuming they weren’t broken, that the pain would pass. And In both cases someone finally noticed the bruised skin, the protruding lump of bone disrupting the continuous smooth forms of an un-shattered human body. They rushed me off for plaster, slings and re-setting. I’ve burned a hand in fire and cut the other with a chainsaw. In all these cases there are balms, positions, pressures, water temperatures, and painkillers that will alleviate the worst of your suffering. This was different, there was no escape. No position, no temperature. Nothing but crawling, writhing, banging, begging desperately and futilely in the hopes that something will give you that momentary relief you find in other injury.
On schedule the next year the pain returned with the season, another quality that would prove deceptive in final diagnosis. Weakened, I finally described in full detail the pain to my doctor- “cluster headaches” she thought, and referred me to a neurologist. The basic neurological exam administered in his office brought similar conclusions- most likely clusters or migraine variant. “We can try a regimen of preventative painkillers, but I’d like to rule some stuff out first.” We tentatively scheduled an MRI but set no date. It seemed to me pointless to rush, I’d as much as been told I’d be saddled with this pain, I’d run the gauntlet, a railroad spike splintering the skull on schedule for an indeterminate number of years. Every couple of months I’d be tortured on the floor of my bedroom, and modern medical science could do nothing. My new insurance would activate in January, so I decided to wait for the MRI.
I met a friend one afternoon in November and as we parted ways, I tripped up the curb and ate shit. Hard. Surprised as I was to be floored by a six inch ledge, I thought it was a freak accident. I stood embarrassed, but thankful no one was around to offer help for the soft scrape on my forehead. My brain delivered the command for my right foot to step forward, and it smashed clumsily into my left ankle. I fell again. Ten minutes of seated recovery passed and I faced the remaining twenty feet to my car. I called schedule my MRI. “Ok, lets see, we have a spot open on Wednesday, February third-” I allowed myself panic for a defense mechanism. My phone calls were frantic. It wasn't possible for me to know what the changes in my physiological routine amounted too, but they were frightening and many. My pulse whirred in my ears, a shoreline of blood surged and fell with the rhythmic patterns of my heart rate. The tide at times rose to a rattle like a washboard pressed to vibrate the walls protecting my eardrums. A pain, a hot needle full of stinging poison rooted through my temple veins every few hours, a slinking criminal in the crawlspace behind my eyes. I was cold and constantly tired. My drawings were suffering and my brain’s communication with my hands was fractured at best. This, in a shortened version, is what I said over the phone to the secretary at the imaging clinic. A few phone calls later another clinic found a space for me days instead of months out. Miserably, I watched the clock from a pathetic, blanket wrapped ball on my living room couch. I hid my fear and my pain when my roommates were around and avoided conversation. And I watched Cheers on Netflix. It was soft and non-abrasive. Two full, infinite days were spent escaping into that Boston bar with my familiar, teasing TV friends.
At the imaging center a stoic Russian radiology technician strapped me in, perfunctory and bored running through the routine setup steps. I knew something was wrong when he tripped mumbling out of his booth raving inarticulately for more tests. He was a step short of panic, and I was giddy to be racing towards diagnosis. They injected me with hot blue gadolinium liquid for contrast and took a second set of brain scans. A neurologist came out of the back and explained that they’d be transferring me to the ER of a bigger hospital, one better equipped to deal with my “abnormality.” No I couldn’t drive, they said, and if I tried they’d have to call the police. I took a cab to the bigger hospital. “Abnormality” is what they called it at the time, but the better name for something like that is giant tumor. A giant tumor was crouching and laying eggs in the fourth ventricle of my brain, restricting blood and fluid from draining into my spinal column, and causing pressure, swelling within the skull, hydrocephalus. I wasn’t allowed to drive, because I should have been in a coma. Medically speaking, it would make sense for me to be in a coma; if I was lucky the pressure won’t have begun the process of herniation, of crushing my brain down into my spinal column, and leaving me brain dead. That it had been growing gradually for so many years was why I was alive now, and why it was so hard to identify. Medical professionals were fascinated by the rarity of an otherwise healthy twenty four year old with a brain tumor. A doctor called me “unicorn.” Nurses and medical interns pointed towards my sheet-partitioned ER stall to whisper “interesting case.”
From my angled vantage point of the busy ER hallway I saw nurses grab each other’s butts and joke about their proximity to the end of shift. It was strange realizing this was a normal day for them. A tired woman my own age looked worn out while she clumsily dug an IV needle into my wrist. Stream after stream of blood dripped onto my hospital bed while she patted down the mess with a wet nap. My long standing phobia of needles was underplayed in the lead heavy haze of pain and fear that settled and choked my ER bed. The young nurse’s night ended and a mothering nurse with a strange name replaced her. She dumped a drug called mannitol through my IV tube. Interested medical professionals explained on several separate occasions the details about the medicine’s crystalline structure, and how it drew pressure from my brain to reduce swelling before surgery. I remember having to pee a lot, and I wondered if it was just mannitol or also somehow relieved brain fluid in all that cloudy urine. “So there will be surgery?” I appreciated how fast things were moving. I was relieved this saga was preparing a conclusion. I let my Mom and my Dad know via text. And my girlfriend. “They are not equipped for the surgery here, we’re transferring you to another hospital.” My mom said she was flying out to LA. I was embarrassed and thought it unnecessary, but I knew there was no stopping her. My girlfriend was coming over to the hospital. I also thought this was unnecessary but it felt wrong to turn her away. In the meantime, I told everyone to wait until I transferred so that they wouldn’t have to join me in my cross-town musical chairs. “The other hospital will have a bed for you in an hour or two.” The nurse pushed a needle into my second bottle of mannitol. “Brain surgery is always risky, but you’re going to a great hospital, where you'll get the best shot at a successful operation.” Then they sent in an insurance representative to sign waivers and discuss my will. Eight hours later I was still cramping in that same temporary hospital bed. I grew sick overhearing the parade of moaning, lung hacking, frantic, foreign language pleas thrown as grotesque shadow puppet silhouettes against my sheet partition. I hadn’t eaten in over twelve hours now, and I was desperately impatient to force resolution on this trail. Enough time spent waiting alone even encouraged me look forward to the company of pity offered by my Mother and girlfriend. What promised embarrassment before now offered comfort in the wake of my new found weakness.
The transport nurse in the ambulance had a lot more to say about mannitol. He seconded the notion of "unicorn" and had a passion for medical trivia. The “fascinating not deadly” attitude toward my tumor helped relieve the fear which, according to him, appeared non-existent. My forced calm, the self defensive posturing appeared to him deadpan. He said so as he wished me luck on my surgery and left.
Cedars Sinai’s ICU looks like the advanced rehabilitation chamber from a hoverboard future, a sleek combination of modernism and disguised medical technology. The effect leaves the impression that one’s recovery might take place while floating in gentle, teal healing liquid, and not bleeding face down on an operating table. Mom, my girlfriend, one of my good friends, and even my Uncle Bart, wandered into the ICU some hours later with clothes and some comics. Surgery was a day or so away, apparently a good sign indicating others would be dead sooner without attention. Everyone came back the night before my morning surgery.
At some point I alerted the nurse to pain, and the conversation in my room stopped. More of the light narcotic painkillers that had worked before, and she left the room. Thirty minutes passed: hell fire, swirling, stinging clouds of killing force. No one but my girlfriend had ever seen me during this part; I was upset that the room full of people would have to weather the show. The self consciousness melted to leave new, fresh stacks of pain. In the trail runs on my bedroom floor, I wondered why one could stay conscious through that level of pain. The humiliation of being stripped and cleaned in front of an audience was unnoticed through the now disorienting hurricane. A dam burst. All the furious, sharp edged cavalry of the blackest hell stormed my pitiful fortress. Armed, steel edged torrents tore through every vessel and capillary of my brain. I now wondered why one could experience this level of pain and be alive. The experience of “me” dissolved into a deafening black tempest. All I knew was the pain, tearing pink irreplaceable chunks from my very being. Cold compresses melted against the raging heat of my forehead. I groped for pack after pack, incinerating them and tossing them into lukewarm puddles. I whispered for painkillers; blind to the near to lethal amount of morphine already coursing unfelt. Reaching wildly, I loved to find the pressure of each squeezing hand. I could tell which of my friends or family I caught by the texture of their skin, the length of their hands, the hardness with which they allowed themselves to cup my shaking fingers. The touch was my only connection to the world beyond my shuttering confusion. Trapped inside myself, I screamed unheard for a mercy I thought would never come. Sputtering, I gave in- a torture victim ready to betray their country, to reveal treasonous secrets in exchange for the pardon of death. I begged in a whisper for euthanasia. I begged for the hungry shark pressure of that pardoning poison. Even through the pain I heard the room grow quiet in the weight of these request. Guilt. Then once again the knives edge of human pain. The anesthesia forced me beneath the rapids and I wasn’t sure if I was being dragged under the current of sleep, or that of death.
I woke in the ICU to silence. Profound, meaningful silence. Late college, I had a conversation: I described to my friends the stress, the “growing noise” in my head. “Don’t you miss the time before that noise? The pressure we feel? Don’t you miss when things were quiet?” There was a mixed, non-committal response. My friends were being difficult. We were all experiencing the stress, the internal, emotional pressure. Only while floating in that pristine, postoperative stillness, did I understand the non-answers. The rushing pressure, a swarm of angry bees practiced a growing fury within the delicate lining of my skull for so many years. So gradual was the rising tide of that swarm that even this horror grew invisible. The absence hurled me into shocking contrast. Soak, milk white serenity. This was most people's always. Now, silence too was mine. Pushing a path through anesthetic haze, I found friends and family waiting. I told them I had to pee, and they told me I was already going. The catheter hurt on the way out. My vulnerability, my feebleness astounded me. A babying indignity darkened my joy for safety. The relief of knowing I wouldn't have to face it alone was almost as moving as the silence itself. For almost a week I failed to walk unaided, and I spent the night vomiting anesthetic. But, the swarm lay weightless and dead on the floor of my skull, and the darkness was passed.