Exist. Live.

Life is Like Jazz

The Day

As part of my psychotherapy, I was asked to write about the initial seizure and subsequent diagnosis from the 3rd person’s perspective. I have buried a lot; I haven’t wanted to return to that particular day, but I know it is present. It is there, in my mind, lurking. It appears in dreams; it presents itself when I let my guard down. In my unconscious states, the presentation in these moments is sometimes cloaked in metaphors and surreal imagery, but I wake knowing where it is tethered. This is human nature; this is our survival mode kicking in.

 

Jeremiah Ray, untitled, 2013, oil, acrylic, charcoal, dirt, on canvas

Jeremiah did not feel well upon waking. Perhaps it was stress or another late night of working on his thesis… he could not tell.

After a shower, he felt slightly better, but there was a tiredness that he could not shake and a queasy feeling in his gut.

He exited his basement apartment and stood on the stoop. The dappled sunlight flooded over him. The air was still cool, as it was barely April, but the sun was growing strong. He closed his eyes and stood still, ‘yes,’ he thought, ‘sunlight will nourish me.’

Stepping down, he dodged the uniformed children making their way to an elementary school just west of his apartment. He noticed, almost daily, that their uniforms had a military look to them. Neatly pressed shirts and pants, leather shoes, etc. They didn’t look like the catholic school uniforms he had worn in his youth.

Jeremiah arrived at the corner of Broadway and Thorndale. It was a busy morning, and, like the school children rushing to make their classes, the cars that whizzed past had an urgency to them. Jeremiah didn’t have such an urgency. He stood on the corner and let the unhindered sun fall over him. The traffic and pedestrians danced around him. He seemed to be at a standstill; he was, in fact, and this made him seem out of place within the whirlwind of the morning commotion.

He had no real urgency, he had none in fact. That morning, his only plan was to go to the park and meet Eda. They had arranged to soak in the sun in Millennium Park. It was, he noted again, a perfect day for such an occasion. Also, he wanted to see more of Eda, she was attractive, intelligent and a good conversationalist. They were still in the early stages of getting to know one another. He liked this time, the explorative and exciting time of a potential relationship.

Part of Jeremiah’s attention was preoccupied with the lingering feeling he had had since he awoke. It wasn’t nausea per se, and he knew the sensation of stress; thus, he could also rule that out. The other part simply wanted to enjoy the sun. He remained in a neutral zone, letting neither sensation nor desire pull the entirety of his attention.

Jeremiah had waited through two rounds of red lights & two rounds of green crosswalk signals beckoning him to join the others in their haste. He decided to go across Broadway to the Thorndale Red Line Station and join in the morning rush. He disliked these morning commutes but loathed the afternoon and evening ones. Depending on the day, the northbound trains leaving downtown anytime between 4 and 8pm were like cattle cars. The morning commute was less crowded; Thorndale was only a few stops before the end of the red line, a perk of living so far out of the city.

The schoolchildren ran past him as he stepped out to cross the four lanes that made up the intersection of Broadway and Thorndale. Broadway was one of those streets that ran a great distance, miles and miles of ever-changing facades; CVS pharmacies, mattress stores, seedy restaurants, the flip side being trendy coffee shops, hipster bars, Whole Foods, etc. Jeremiah was used to New England streets, even the city streets like those in Boston, that curved around this way and that, intersections that confused tourists and locals alike, and one-way streets that began randomly. The city had no real planning and just grew with the expansion of the population, which grew due to the Industrial Revolution and the massive changes it brought with it. It was as if the city reached out in all directions, sending runners here and there that shaped the city with some chaotic beauty. On the other hand, Chicago was systematic; streets would run for miles and miles, and the flatness of the Midwest let them stretch to no end.

The sound of the schoolchildren became slightly muffled, as if there was some sort of ringing in his ears or that they had water in them. Sunlight bounced off of a storefront window and blinded him. It was a flash, like an explosion, a bolt of lightning. The schoolchildren ran about, laughing gleefully. Looking down Jeremiah saw the shadows of everyone going to and fro, it was an insane dance upon the sidewalk; bodies blending and merging, figures morphing into multi-limbed creatures that split apart, multiplying and dividing. Again, an explosion as the sunlight bounced off another storefront window. He had kept his gaze down, mesmerized by the multi-limbed shadows. As the blast of light occurred, the shadows dispersed as if running from it, as if scared. Then, when the lightning flash passed in the blink of an eye, the shadows returned and resumed their odd dance.

Overhead, the northbound Red Line slowed at the station. The thunderous wheels rolled to a stop and then began again, generating this metallic cacophony that quickened until it was swallowed up by the southbound train. The two sounds were dissonant and jarring. The northbound train was picking up speed as the southbound train began to slow. The sounds pulled at one another, tearing an ugly hole in the peaceful morning.

Clack clack claclaclaclaclaclclcl the northbound train ran away.

A hiss of sorts sounded out; there, above him on the trestle that stretched over Thorndale, was the southbound train. It stretched many cars and seemed to loom almost imposingly above him. The doors opened and then closed, and it moved south like its northbound counterpart as if tugged by some unknown force. The sunlight broke through the train cars; at first, it was slow, shadow-light-shadow-light. Then, as the train increased speed, the timing generated a hypnotic sensation even behind closed eyes, shadow-light-shadow-li-sha—l-sh-l-s.

Jeremiah’s stomach turned, the queasiness rose up inside him, and there was almost this desire to wretch. He was unsure at that moment if he was standing still. Was he moving? Others around him took no notice; they flowed about him like a river moving around a large rock. Unlike the rock holding its own in the torrents of raging water, he began to give way, to slip. A sneaking sensation of paranoia crept up within him. It crawled up his spine and filled his mind with questions: Are you ok? Are these people aware of you? Are you having a panic attack? His awareness of self made his eyes move about pinpointing someone or something that might be an anchor he could hold. There was no one. There was nothing.

The feeling of queasiness moved from his gut to his head, and there became a pressure. As it ventured from his gut to his head, it curled its fingers about his throat, then wrenched his jaw open with such force. It felt dislocated, swinging there, disjointed, resting on its hinges. Then, the fingers crawled into his brain. His eyes fluttered. They fluttered again. The two trains arrived simultaneously, northbound and southbound, directly across from one another on the narrow, wooden platform that separated the two trains. The doors opened at the same time, and both departed at the same time. The metallic clanging was almost symphonic and then again became dissonant as the two ran off in separate directions, each moving at different speeds.

His unhinged jaw swung open and locked in that position, ajar and painful. His stomach burned, his legs unsteady. Jeremiah’s right hand began curling inward, fingers to palms. He had no control of this movement, none whatsoever. The southbound train arrived, and the shadows flickered until they slowed to a stop. His eyes fluttered in a syncopated rhythm; eye open, shadow, eye closed, light, etc.

His ears filled with every sound, every car, every child running off to school, every footstep, every flash of light… Then, there was not a single sound at all. Like the shadows upon the ground that moments before had transfixed his attention, so too did the motion of everything and everyone, just a blur of beings and objects in various colors and shapes, coming in and out of lights and shadows. Then there was stillness and just a whooshing sound in his ears.

His curling hand turned inward and was drawn upward towards his open jaw, then further to his head. He cupped it as best he could with his rigid hand. It wasn’t pain that he felt; he didn’t know the words. There was simply a lack of control. He could not say no to stop this, to return his hand to his side and close his jaw. The whooshing sound disappeared, but the world still remained motionless. A sound came from him, from within him. It wasn’t a word or a plea for help. It was a word to him yet outside his vocabulary. A moan escaped him as a sigh, as a yawn might. A long, extended moan. Then his body fell, his legs gave way, and his being slipped downward into some hole, into some sort of abyss that opened underneath him, a trapdoor in the earth.

Where was he? Who was he? Just blackness that engulfed him; rich, thick darkness in which no light was present, no words were uttered, nothing. His sigh had left, the morning commotion had gone, and the trains no longer sounded out. Nothing. No one.

PTSD

Returning

I went to the treatment clinic today for my 6-month post-transplant immunizations. The stem cell transplants wipe the slate clean, literally, and I have to re-immunize myself. The schedule for immunizations is 6 months out, 12 months, and then 18 months out.

Going back to the clinic is so hard, even for something as quick, easy, and relatively painless as 4 injections. So many memories are contained in that building; every emotional and psychological up and down along the seemingly endless journey to getting better is linked to this place. Better, as if ‘better’ was some destination and I knew the general direction but had no map or even a sense of distance to gauge anything… or everything.

My salvage treatment, the chemo that was administered after the recurrence was noted and before the transplants, took place around this time last year. Today, when I entered the actual treatment room, the lighting was very similar; the way it poured through the windows on the eastern side of the building, bouncing off the individual treatment chairs all lined up along the wall…  it was almost identical. I could feel my stomach turning with the memories that were percolating.

Time doesn’t seem to change inside the clinic itself. While waiting for my oncologist’s approval of my immunizations, I fumbled with some paperwork, but I was really observing, watching slyly life move around me. All the chairs lined up along the walls were full; each one held a patient. They added more chairs since my last visit. They even expanded the parking lot. If this was a restaurant, one might say, “Business is good”… in this case, the additional seating and parking just seem kinda sad. Some patients had visitors or family members. Some slept. Others stared at their phones, seeking a connection to the world that was, after all, a few paces away, but, as I recall, this proximity seemed like lightyears.

A barely audible playlist was turning out one feel-good oldie after another. The Beatles told me that the sun was almost here and had been an awful, lonely winter. The Beach Boys, singing in their beautiful harmonies, waxed poetic about how it’d be so nice to be older, and then they wouldn’t have to wait so long. Yes, that’s the type of world, so they told me, that they belonged in.

The nurses bless them all, check in on meds, and inform the patients about what they’re getting. They make small talk and tell jokes to keep things seem normal. I keep hearing them remind each patient that today’s the first day of spring.

There was a younger patient there, maybe a little younger than me. The majority of patients were older, so the younger one stood out. I bet I looked like they did; out of place, antsy, already keen on leaving but knowing the long treatment day and week are just beginning. They flipped through a worn-out, well-thumbed magazine, but I could tell, both by their empty gaze at the pages and being in that very same place myself, that their actions were just an empty gesture, a distraction, escapism.

Time may feel constant, or even stagnant, inside the clinic, but it is moving forward. I didn’t recognize anyone except for the nurses, and though I don’t know, I like to think that they, too, are resuming something that resembles a life. I like to think that they finally arrived at ‘better,’ even if, like my journey, they had to stop, ask for directions, change a flat tire, take a few detours, get lost again… Even if, like my journey, they are still en route, they can at least see the city lights on the horizon. 

image

Hair loss / Hair return

October 2017

I have witnessed my hair fall out three different times due to chemotherapy treatment. The first time was quite a shock. I looked down one morning to see hair covering my pillowcase. But the real shock came when realizing how quickly it happened, how quickly the chemicals flooded my system and started killing off cells. My very first “conventional” round of chemo was administered on a bi-weekly basis, if I remember correctly. This gave me a week in between to rest and recover before the next round. Because the timing of everything was so fast, I started the first round of treatment almost immediately after returning home to New England and, as such, had a full head of hair and a beard. Some people cut their hair close and shave preemptively before treatment, but I didn’t have time. Anyway, on the first off-week, the first week between cycles, I awoke one morning and discovered my pillowcase covered in my hair. That same morning, I stood in the shower and watched as the water deepened due to the clumps of hair forming in and around the drain. i didn’t know then that i would witness this shedding (a term i’ve come to enjoy & one i find apt) another two times very shortly.

The sensation of losing one’s hair, especially at the rate at which it falls out due to chemo, is unnerving, to say the least. Hair has always held this sacred energy; it connects to the past and holds information about various aspects of our lives. During treatment, when it begins to fall out in fistfuls, it’s hard to rationalize this loss by saying, “It’s the chemo doing its job,” when one understands it to be the result of the indiscriminate killing off of cells. It doesn’t necessarily target rogue cells or cells that have gone haywire and/or rapidly dividing cells. This has always been the thing that has frightened me about chemotherapy treatment — it is simultaneously saving someone and killing them.

A closely cropped head of (already thinning) hair is the norm for me. However, when the eyelashes fall out and the eyebrows thin to near nonexistence, it is hard to look in the mirror and not feel alien within one’s body.

Just as I’ve witnessed the loss of my hair 3 different times, I’ve also had the pleasure of watching it return. And, in all honesty, it is a pleasurable experience to watch such a seemingly spontaneous rebirth occur. This time around, the timing couldn’t be better. As the days become shorter and cooler, I’m slowly sprouting a new beard & checking daily if the fuzzy growth appears & thickens atop my head.

Birthdays

Sweet, late August Maine air

Tomorrow, Aug 25, 2017, exactly 3 weeks from the day of admittance, I will be discharged! Well, this is the hope, and as of right now, as long as a fever doesn’t appear out of nowhere overnight, I should be home tomorrow evening. I want to fall asleep listening to the crickets breathing in the sweet, late August Maine air.

Over a week ago, when I wrote about the ability to, once again, enjoy a cup of tea, I thought that I was on the mend and that the worst of this transplant was drifting away into memory. I was very wrong. When all my counts finally bottomed out, I was in the worst possible state — for days. I assumed this transplant would be much like the past, but I just kept feeling worse and worse post “day 0” (the day I received my cells back). There are several reasons why this transplant hit me harder: different chemo regimens, shorter recovery/rest time between transplants, etc. All I know is that I hope never again to be even close to some of the horrific states I was in over the past several days. One night, I was not sure of the time; I found myself curled into a fetal position and moaning continuously. Another night, I asked the night nurse if I was dying. I shudder to think of anyone in this state of mind or body.

If everything goes according to plan and I am discharged tomorrow, I will return for follow-up labs (blood work) and a few other tests in about a week.

But, for now, this appointment is very far from my mind. Right now, I merely want stillness, rest — deep, nurturing rest. 

What other word is there?