Disappearing

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• A few days ago, I met a new doctor.  On August 13th of this year, the FDA approved a new drug that has had success shrinking tumors and cysts that are generated by the genetic syndrome I was born with, Von Hippel Lindau. (VHL).  Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in up to 10 parts of the body.  I inquired of my nephrologist (kidney doctor) about the drug, and she has recruited all of my specialists to research this new medication.  They all met with an oncologist, as apparently, this drug is classified as a chemotherapy drug.  Since the medication in brand new, it will need to be approved by my hospital’s pharmacy to bring it in.  I would be first patient to use it in their system.  It is very expensive.  That is the last hurdle I need to cross, before I will be able to start taking the drug.  The team decided that it is worth me trying, if it can shrink tumors.  I currently have 5 new tumors growing, which is alarming since I had several removed in a surgery earlier this year, in February.  I still have not fully recovered from that surgery.  This new doctor I met with told me that a big reason that they think I should try this new medication is the danger of having another head surgery.  According to my neurosurgeon, I almost died during the surgery on February 3^rd.  This was news to me.

  It was alarming.  I knew it was a tough surgery, but I had no idea that it was that difficult.  It put some things into new light.  My hospital stay dragged on for a full month.  It seemed much longer.  During my stay, I experienced hallucinations, severe paranoia, and intense fear.  In other words, I was crazy.  However, much of that time, I now realize was during the first few days after my surgery.  Like all of my previous surgeries over the last 35+ years, I always remember coming to in recovery.  This one, I do not.  Instead I remember a long convoluted conspiracy to destroy my life by an underground terrorist group that had tried to recruit me, but turned against me when their psychotic leader rejected me.  I was desperately scared, because I was helpless in all aspects.  Because of Covid-19 protocols, I was alone.  There were no visitors.  Eventually, my family was able to see me on a limited basis, but at the time, I was waging an epic battle for survival in my head against this underground force, and apparently, in reality.  There were several points, where I was in a position to decide to stay and fight, or completely give up.  I remember giving up in these visions, and feeling peaceful and calm, but still with an underlying fear.  I began to consistently surrender in these battles in my head, until eventually, I began to come back to reality.  I never fully came back, until about the last week during my stay.

  Except that I really haven’t.  Those hallucinations are now imbedded in my mind as solid and very real memories.  I find myself often filled with fear and a disturbing feeling that I can’t trust people and that there are at times conspiracies working against me.  I have to fight off these feelings.  I mean, why would there be a conspiracy against me?  Why would anyone bother?  Now that would be crazy.  I have not yet processed this near death news, nor do I believe that there’s really anything to process.  I cannot change what happened, but I am now wondering if I was giving up, but somehow survived anyway.  I have been filled with dread ever since.  Perhaps I’m living a life, I no longer want to live.

  
  

Cayman

Have you ever had one of those songs that you absolutely can’t get enough of come into your life?  It happens to most of us.  A song you play over and over again for days and weeks.  What are some of those songs?  Think about what was happening in your life during that time.  Did the song play into those circumstances or was it simply an ear worm that burrowed its way into your mind?  How often does this happen to you?  For me, it happens a few times a year, but some of them are more memorable than others.  One that especially stands out is the song “Cayman” by Mira. 

As the year 2000’s spring turned into summer I found out, first via a continuously intensifying never ending headache and then by a doctor’s diagnosis, that I had a rather large brain cyst expanding inside my brain stem (see first warnings signs story here: Road to Nowhere).  Even though the neurosurgeon told me that if I hadn’t have scheduled the MRI and follow up appointment with him that the rate of the cyst growth would kill me within a couple of months, my surgery to remove said cyst wasn’t scheduled for another six weeks.  It was during these six weeks that my life became very strange.

Having something the size of a large navel orange in the center of your head does unusual things to a person.  Besides the constant intense head pain, I began to lose feeling on the left side of my body.  Not complete paralysis, but that “my leg’s asleep!” kind of tingly numbness.  There was also a slow change in perception of colors.  Blues became yellows, greens became purples, and a lot of colors became a pale pink.  I began to crave certain chemical smells.  I began to crave the bowling alley/bus station bathroom smell created by things like generic label Pine Sol, and dirty ashtrays.  I also managed to get the hiccups for nearly two weeks without letup, which wasn’t as bad as it would seem.  They made me laugh a lot while in the presence of others.  It was impossible to get out an uninterrupted sentence, but I just kept going.  Sleep was tough, but necessary to find any kind of relief.  The other ways, I managed with the pain was to walk all the time.  It was hot out, but I had to keep moving.  It was golf too.  Even though I needed help getting the ball out of the hole (I would fall down when I bent over), it was one the rare times I felt fairly ok.  The activity must’ve been enough of a distraction to keep the pain slightly under control.

Music, my usual go to source for comfort, was not much help.  I had a difficult time focusing.  I have always taken time to listen to albums, not as background music, but as the only focus – with headphones.  This was tough to do with that throbbing beast in my head.  Also, the sounds often became grating and hard to manage, which was a nightmarish proposition that I could not comprehend.  There were a couple of exceptions.  The breezy “Bringin’ Me Home” from Mojave 3 being one.  The other was “Cayman” by Mira.  I came across this song via the Italian music magazine Losing Today and its pretty solid companion dream pop CD compilation Painted Dream II.  Surprisingly, I have no recollection as to how I ran across this magazine.  Maybe I bought it through pennyblackmusic.co.uk, or Parasol Mailorder, I’m not sure.  What I am sure is that I would listen to “Cayman” sometimes six or seven times in a row each time I fired up the old sound machine and I did not remove that song from my player until weeks after I had the brain surgery. 

There is a poignant power in the music of “Cayman.”  It builds dramatically, yet effortlessly.  It soars and glides, but is given great depth with its pounding drums and swells of buzzing guitar.  Regina Sosinki’s shining vocals fit the soundscape perfectly.  Besides being an epic song, I’m not certain why this one in particular was, not only one of the only songs I could manage to listen to peacefully, but the only one that was truly therapeutic during that time of my life.  A single song, which seems to be about a cat, managed to guide me through six plus weeks of unbearable pain and excruciating anxiety, better than anything else. 

Later that summer, I finally purchased and enjoyed Mira’s self-titled debut album, along with their other two albums (and one rarities compilation), but it was the endless plays of “Cayman” during the summer of 2000, and hundreds of times in the years since, that will always be of great comfort.  I have never grown tired of this song.  Thank you.

(https://www.facebook.com/mirathebandofficial/)

Mira "Cayman"

Ocean Breathes Salty

He sat down on the bench beneath the coat rack. Various odors drifted around his senses from the jackets lined up above his head. Each jacket’s stench told a different story about its owner. He leaned his elbows onto his knees and dropped his face into his palms. He didn’t want to delve into those stories. Pain felt like it was going to rupture out from the middle of his back, or at least seep out through the hole in his left side. The pain was from pressure. The pressure was from old blood swirling around his insides from a long stretch of internal bleeding while on blood thinners during a disastrous hospital stay. He was dizzy from the pills he had taken. He began to shiver, as he attempted to regain his feet and return to work. He closed his eyes and concentrated on his hands as they struggled to retie the white apron around his waist. He heard a voice from behind him ask if he was okay.

“Well that is that

And this is this

You tell me what you want

I’ll tell you what you get

You get away from me”

Red and green cloud the pool’s alternating surface direction inside the bright white porcelain bowl. He managed a grunt of laughter as he thought to himself about how the colors were so festive. He tried to ignore the burn from the infection. He was unable to button his jeans, because his hands were shaking too much. The bandage wrapped around his abdomen had begun to unstick, so he tried to hold it in place with his elbow. The tiny rubber ball underneath the burgundy stained gauze that was connected to a tube that thrust deep inside of him looked like it was filled with Kool-Aid, but it made him think of knife wounds.

“The ocean breathes salty

Won’t you carry him in

In your head

In your mouth

In your soul

And maybe we’ll get lucky

And we’ll both grow old

Well I don’t know

I don’t know

I hope so”

Wrapping his arms tightly around each other, he allowed his head to fall against the stair behind it. His momentum shifted his weight across the steps into the wall. He couldn’t make the ataxia of his torso stop no matter how hard he tried to squeeze himself still. His teeth rattled despite his efforts to clamp down his jaw and arrest control of his muscles from the disease that had already eaten away his soul. He could’ve called out for help, but all he could think about was his impending death. It was past 3 am anyway. He didn’t want to wake anyone. He pondered the notion of his death and what it meant to him. Nothing came to mind, other than a sense of relief and the emptiness that he had always envisioned. He had learned less than two months prior that bleeding to death internally would be a good way to go. It was so relaxing to be slowly drained of life; to delve peacefully into a deep sleep and then never wake up. He did wake up though, and instead found himself sweating, shivering, nauseous and forced into a fallen position on a staircase due to crippling pain.

“Well that is that

And this is this

You told me what you saw

And I’ll tell you what you missed

When the ocean met the sky

You missed when time in life

Shook hands and said goodbye

When the Earth folded in on itself

And said ‘Good luck

I hope heaven and hell

Are really there

I wouldn’t hold my breath’

You wasted life

Why wouldn’t you waste death?”

He stared out toward the horizon. The low autumn afternoon sun still burned bright, if not hot. He considered how the tiny bumps for hills covered with tall trees to the west are blocking his view of the ocean from this vantage point. He had actually never seen the beach along this stretch. He had been to this little town hundreds of times, but never ventured anywhere beyond its two very modest golf courses, which lie just inland. He held his shirt up, as his friend worked diligently to reapply his stained bandage to his side and back. A layer of sweat from the activity and humid heavy coastal air made the bandage a liability. The third member of their group, who joined a few holes prior, asked if he could play through. They nodded and laughed at the circumstance. His pain and mourning have been tempered with determination and a realization at how much he wanted to keep fighting.

“The ocean breathes salty

Won’t you carry him in

In your head

In your mouth

In your soul

And the more we move ahead

The more we’re stuck in rewind

Well I don’t mind

I don’t mind

How could I mind?”

lyrics & title taken from Isaac Brock./Modest Mouse

la lune

Swallowing down a burning taste of cancer and cringing from a rusty throat. Two plastic tubes dangle from a hole just above the heart without use and panels of several IV lines stretch out from the neck. An itch on the tip of the nose reveals what feels like a wire hanger unbent and then shoved into the right nostril and down through the back of the throat and on into the stomach. On the other end, another tube runs from the hanger into a bag hooked to the side of the bed. The bag is beige with a chunky viscous. The left arm is wrapped tight in bloody gauze and is throbbing to escape. The chest is trapped underneath a weight of monitors and tightly wound bandages making breath difficult to draw in. Wires and tubes strap the body down from all corners of the plastic bed, which somehow are keeping track of proof of life on one of the boxes with lights on the periphery of the room.


“A little drumming boy
Is beating in my chest”

Lights flash and scream out alarms, while feeble beeps come and go or jab at an annoying constant rate without consequence. A television shows a blurry figure dancing to the hum of quiet static in front of the moon from above. It is the only distraction from the various intense aches and stabbing stings taunting every second.


“Is this a competition?
I’m definitely winning
Because two by two
They came through
And one in every one
Fits a million”

Is this an experiment or simply organized torture? Is this worth a potential extension of life, or is it an extension of a nightmare? Choking down regret and questioning every decision and every move along the way. Is this all there is? Sensory deprivation is the only way to survive this moment and the moment after that. It is disorienting and disillusioning, but the only time that the pain is somewhat bearable. Maybe someday this will all end. In the meantime, it’s best to keep it all inside. Carry it to the grave. Pretend that everything will be alright and that it’s all worth the effort, while knowing that none of this matters. This is potentially how we could all find ourselves sooner or later.


“You keep on holding back
Can’t break it to yourself
That your life means nothing
But the fear’s making sense”



song lyrics: Sons and Daughters.