Talk to Me

 

I cannot put pegs into these slots 

If any of you have stuck with me on these random posts I share every so often, over the past ten years or so, you’ll know that I’ve shared a lot of tales regarding my medical history.  I’m sure it’s not very entertaining, but it’s been my way of dealing with it.  Writing about my medical experiences helps me deal with them emotionally.  None of it is intended to create a pity party for me.  It is to get it off my chest, and by chance, by sharing my experiences, I might reach someone that may be helped!  I would be astounded.  I also like the idea that it might create connection.  It rarely has, but perhaps one day. 

Currently, I am in a strange place.  I was on a new medication that has been pretty successful at shrinking tumors caused by the genetic syndrome I have (VHL).  I began taking it in March of this year.  It did cause minor tumor shrinkage by May, but for me, the side effects were tough to handle.  I began to regularly struggle to breathe, and started to have occasional chest pains.  The doctor lowered my dose.  My next MRI, showed no tumor change by August, which seemed promising, yet the side effects made life unlivable, so my oncologist lowered my dose again.  This seemed okay, until September when the side effects kicked in again!  So bad, the chest pains were worse than ever.  I started having days where I could not do anything at all, because of the pain and lack of oxygen in my blood stream.  Turns out I had developed atrial fibrillation.  My heart was beating irregularly and way too fast.  One day in October, I actually ended up going to the ER, which seems to be called the ED now.  Now, I’m no longer taking the medication and my most recent MRI, early this month, shows new tumor growth. 

At this point, I honestly don’t know what to do.  I’ve been told that another brain surgery will be too dangerous, I already know that uncontained tumor growth will lead to paralysis, incredible pain, and eventually an agonizing death.  So, what should I do?  The medication is too harsh to take.  It’s intolerable.  I’ve been in mourning, while I try to accept the idea that I’ll have a rough road ahead.  I’m not done fighting, but I need to prepare for an unpleasant and possibly deadly near future.

Again, none of this is intended to elicit sympathy, it is simply my reality.  Besides possible connection with people, I am looking for understanding and support.  I am honestly, exhausted about unsolicited advice from people who clearly do not understand or try to understand my situation.  I do not believe that my problems are any worse than anyone else’s.  In fact, I am working hard to acknowledge my great fortune in life.  Everything could be so much worse. 

All of us have problems, it’s a part of living.  I get incredibly frustrated when people try to compete over who has things worse!  Is that what you really want?  Do you want to win at misery?  I certainly don’t, nor do I think I would.  There is a narcissism there that I cannot relate to and that I find incredibly frustrating.  Because of my experiences, I am actually very empathetic.  I take people’s troubles very seriously.  No matter what the troubles may consist of.  Being a patient in the hospital for long periods of time can be frustrating and difficult, but mostly humbling.  Your privacy and personal space are constantly invaded.  It’s like a chance to live like a helpless infant, but this time you will likely remember it – vividly!  As a side effect, at least for me, it takes away a lot of bullshit fronts that we all build up over time. 

 

Therapy is always all smiles

I have lost friendships as my health has declined in recent years, and more so, find that I don’t hear, nearly as often from my friends.  I don’t blame them, because I cannot do a lot of the things I used to be able to.  I wish it weren’t so, but it is reality, and another thing for me to mourn, along with mourning of the loss of that old functionality.  I get tired and very frustrated by fumbling around and struggling in an effort to do simple tasks.  And you know what?  It’s not pretty.  I try to be patient and positive, but endless hours of Physical and Occupational therapy exercise over several years have made very little impact.  I get incredibly angry and my neighbors are likely exhausted from hearing me shout exclamations through the shared walls of our apartments.  Everyone chooses their own path, and if I’m too much of a bummer, or no longer am that go to guy for a companion at a live show, or out on the golf course, or whatever, I respect the choice to take me off the list.  However, and most important, I want to thank everyone who has stuck by me over the years, I cannot thank you all enough!  Your generosity has kept me afloat, and that is incredibly humbling as well. 

I’m not sure what else I really want to say, other than a little understanding would be nice and incredibly comforting to me.  I am upset and angry enough.  Like I mentioned before, it helps me get my anxiety under some control, if I write about these things.  I have a lot of fight left in me!  I’m simply uncertain right now, and frankly, scared.

Trust

He was confused.  For some reason, there were people everywhere in his hospital room.  What happened to Covid protocols.  Why couldn’t he have visitors, if they were grouping patients together?  Last he remembered, he had been in the ICU.  Now, there were blinding lights, a TV blaring, and people all around, including kids.  The room was large and extended to the outside.  It reminded him of being at a camp.  The nurse gathered everyone to the outside area – a patio.  There were rows of people kneeling in a circle.  The children in the inner circle and adults around them.  He was still in his hospital gown and chilly from the cold evening air.  He asked the nurse if she could get him something for his throat, which felt scratchy.

The group of people in a circle were about to play some sort of game.  The nurse instructed everyone about how the game was played.  He didn’t pay any attention, as he sort of half-knelt on the outside of the circle.  He didn’t like games, or children.  Even as a child, he didn’t really like children.  He had several friends, but he mostly kept to himself.  He especially hated kids in movies and TV shows.  He always felt there was something suspicious and creepy about them.  He felt that the kids were always somehow generic depictions of kids as adults often perceive them: totally unrealistic and annoying.  The boys were always wat too sensitive and stupid, or bullies.  The girls were very saccharine sweet and gentle, or conniving and evil.  No nuance.  Nothing in-between.  You could only get intelligent characters with real feelings in the Peanuts cartoons.

He was staring at the TV, when the nurse returned with what looked like a spray bottle of Chloraseptic from the 70s for his throat.  He thought to himself that it may have been that long since he had used it.  He was super excited about it!  She sprayed a shot onto his tongue, which had been damaged during his surgery and was so swollen that he had a difficult time rolling it out of his mouth.  The sticky red substance burned his tongue at first, but the gooey juice hit his throat and he grinned at the distant memories it elicited.  He and the nurse discussed memories of the numbing candy that is the Chloraseptic.  He asked her, over the laughing and clapping of the crowd of people, if she could change the channel on the TV to some new show that was supposed to be about a guy on kidney dialysis.  He was curious, because he had been on dialysis.  She did, but it was already in progress.  He became immediately distracted and bored.  The outdoor area slowly emptied out and he sat on the edge of his hospital bed and stared at the Chloraseptic bottle, grabbed it, sprayed it into his mouth, or tried to, missed and instead sprayed it around his mouth.  He glanced around for a wash cloth, gave up, and simply wiped around his mouth with his hand.  He eventually laid back into his bed and wiped his sticky hand on the sheets.

A cool blast of air hit his naked back.  He wrapped his arms tightly around his torso.  He looked down and realized that he was naked, except for some tubes coming out of his body.  Gone was his flimsy hospital gown.  He called for the nurse after a few minutes of shivering.  He realized that he was in the back of something akin to mining cars on a rail.  His was about five empty cars back from the front.  The cars curled to the right and back inside the hospital.  Meanwhile, he was outside on the covered patio.  He told the nurse he was cold, the nurse said she’d be right back.  He examined his predicament.  How did he get here?  The patio was decorated with Halloween decorations.  Jack o’ Lanterns were placed around, black construction paper bat cutouts were everywhere,  and there was a string of orange lights along the patio ceiling.  He wasn’t sure if it was the Halloween vibes, or simply his dislike of that particular holiday that was giving him an itchy feeling of dread.  He tried to look around behind him, but he could not turn his head more than an inch or two, and he had already lost his peripheral vision prior to his brain surgery.  Then he heard something behind him.  That’s when he realized there was someone back there.

 

The nurse returned.  That’s when he noticed she wasn’t wearing scrubs, but instead wearing an old school nurse outfit with the weird hair hat thing folded into her hair.  He hadn’t seen a nurse dressed like that since his first hospital stay in the mid-eighties, and even then, most didn’t.  It must be Halloween.  He was still cold, but instead asked her if someone was behind him.  She looked right where he suspected this figure stood and hesitated and had recognition in her eyes.  He heard the sound of a gun clicking into firing mode. 

“No, there’s no one else here.”

He did not believe her.  She could no longer be trusted.  Here he was, naked, cold, outdoors, and about to be shot in the back.  He could not climb out of the railcar, nor turn his head, because of the surgery. 

“I know there is someone there.  I can feel them.”

“No, I swear to you, it’s just you and I, Alexander.”

She turned and left, and circled back indoors.

There was movement, he noticed, reflecting off a dark window to his right, but still in front of him.  He could hear someone let out some air and then take a quick breath in.  It seemed like it was from directly behind him.  He imagined someone with a pistol pointed down directly at the back of his head.  He started to say something, but instead decided he was okay with this.  He didn’t understand why this would happen.  The hospital is supposed to be a safe place, but he decided he was ready to give up fighting.  He was ready for this all to be over.  He put his head forward and put his arms out to show his surrender, yet nothing happened. 

After what seemed like hours.  He decided to try to escape.  Somehow, after several minutes, he willed himself out of the rail car, which felt like a prison.  He hurt his ribs, and scraped his knees while sliding out and hit the pavement of the patio indelicately.  He found his gown, which he had been sitting on.  He did his best to put it on and even tried to tie it on at the back of his neck, so it wouldn’t constantly fall off his shoulders and down his arms.  He did not see anyone around and the way back into the hospital was closed off, so he crawled/half walked his way off the patio onto some damp grass that wrapped around the hospital building and its surrounding bushes. 

It was very dark, but there were a lot of streetlamps illuminating the greenery giving the shrubbery long shadows – making them look much larger than they were.  He scuttled around the building in a shuffle.  He couldn’t quite walk, but this wasn’t exactly crawling either.  The uneven ground made him stumble and fall a lot.  There were windows every twenty feet or so, which looked like black squares.  The bushes would break and he could approach each window.  After checking several windows, he approached one and thought he saw movement inside.  He hunched down and felt that sinking feeling that there was a presence behind him again.  He envisioned the figure with the gun trained on him from directly behind.  He could hear the crunch of rubber soled sneakers squeak on the damp grass quietly behind him.  This time though, he sensed another figure to his left.  He couldn’t be sure, but he didn’t sense any danger.  He quickly jerked his head to the left, as far as it would go, and a striking flash of pain shot down his spine – the pain dropped him to his knees.  He couldn’t be sure, but he surmised that the second presence had a motion picture camera trained on him.  He knocked on the window and began to shiver. 

His nurse opened the window from inside. 

“Shhhhh” she hissed.  “You’re going to ruin everything!”

“Can I get back to bed?  I’m exhausted and cold” he pleaded, before adding, “What’s going on?”

“There’s nothing going on, please trust me.  Would I do anything to hurt you?”

He hesitated.  He was confused by all of this activity.  He’d been in hospitals several times, yet this time, he wasn’t sure where he was or why he had been left alone outside.

“I – I don’t think so.  Can you help me?”

“Cut!”  He heard from behind.  He clumsily shifted from his knees to sit on his backside, so he could see out away from the window.  The damp grass made his exposed butt itch like crazy.  There was more than a figure or two behind him.  There were a bunch of people.  He didn’t see anyone with a gun, but instead what seemed to be an entire film crew!   There were a couple of cameras, someone with a long microphone, and likely a gaffer, and some grips.  He could see his nurse, now outside, and it looked like she was arguing with another woman.  This other woman seemed to be in charge – the director perhaps?

“He’s no good!  This isn’t working!  He’s not right for this!” the director shouted, while gesturing towards him. 

“I thought that there was no script!  I thought the whole plan was to see what happens!” his nurse seemed agitated.

“Let’s break it down,” the director shouted, and immediately, the crew, who had been so quiet, were now a flurry of activity.  What seemed like maybe thirty people were moving all around him, putting devices into cases, wrapping cords into loops, stuffing their faces with pastries, and carrying goods to a van far off in the parking lot.  

After an eternity of bewilderment, he looked at his nurse, who was now standing next to him. 

“Let’s get you into a wheelchair,” then she shouted out to some young guy to bring a chair.  The director walked over to him and the nurse, who stood with her arms crossed, her left foot placed in front of her, and an irritated look on her face.

“I’m sorry,” Alexander mumbled, looking up at the director.

“Oh Jesus!!” she gasped and stormed off toward the van.

The young guy eventually showed up with a wheelchair and he and the nurse helped Alexander transfer into the chair.  Immediately, his tense back relaxed and he started deep breathing.  Though still chilly, he felt a lot better, but instead of wheeling him back inside the hospital, they both walked off.  Most of the crew had disappeared and the van was gone.  He was alone. 

He turned his chair toward the window he was in front of and saw his nurse and the director in a conversation.  It looked like an argument.  Eventually, the nurse left the room and he sat in the wheelchair and watched the director stand in front of a whiteboard, crossing notes off the board and writing new ones over it. 

He sat there, for what seemed like an hour, shivering.  He shouted out for help, but no one came.

Daylight filled the room.  He tried to open his eyes and see where he was.  He was laying down back in his hospital bed.  He could tell that he had fresh and clean bedsheets.  He was still cold.  He pulled the comforter up over his shoulders.  He looked around the room through the blur.  It was like he had Vaseline in his eyes.  He struggled to focus and saw a blurry bottle of Chloraseptic sitting on the bedside table.  He dropped his head back onto the pillow, closed his eyes, and let his breath go until there was nothing left in his lungs.e dropped his head baxck He dropped He

 

 

 

The Light

 

He wrapped the sleeve of his jacket around his right fist and used the fabric to dry off a circle of condensation on the inside window of the bus so he could see out.  It was dark – really dark.  It was deep into Fall, when the darkness comes early, and we’re all still kind of used to the daylight lasting well into the evening.  He liked watching the lights coming from the buildings this particular bus passed along its path.  Its path was a long one.  It helped pass the time.  This was a commuter bus from downtown, through SW Portland surface streets, all the way out to the suburbs and ending finally in the countryside.  He enjoyed looking at the shops along the way.  He always noticed shops that he would not see during the day.  These intrigued him and made him think that maybe he would one day stop off and uncover some sort of Daniel Pinkwater world, where he would meet strange characters in a mysterious coffee shop or all night bookstore and go on adventures.  He was also intrigued by the seemingly endless number of apartment complexes along the way.  They were all much like his own.  He was fascinated by how few lights emanated from them.  He wondered if they were filled with lonely people, like himself, who while away their time at home, alone, mostly in the dark.  He never particularly liked light.  He liked the darkness.  His eyes were generally pretty sensitive to brightness.  He began to try to discern the lights that were coming from windows of the apartments.  There were many different shades, colors, and levels of brightness.  A strong wave of sadness enveloped him.  He began to imagine internal crises going on inside those boxes.  All of those people so close together, yet all living completely separate.  

His mind drifted back to a long-ago memory of him and his father visiting some young family’s home.  It was a home on one of those streets that has a grass covered island down the middle of the street.  On the end of that island was a covered half basketball court with one hoop.  It was dusk.  Mostly dark, but there were still faint hints of pale pink and urine yellow washes in the western sky.  Bright buzzing lights were already blaring from tall poles in and around the court.  He spent his time shooting baskets, because he used to enjoy that.  The constant bouncing of the ball, only broken by brief moments of silence for shots, echoed through the neighborhood, but did not stir any attention.  The echo of the dribbles – a simultaneous thwip/thud – were beginning to give him a headache, yet he continued on.  He was hyper aware of his surroundings.  He couldn’t really see outside the covered barrier due to the intensity of the lights, which were above and posted at each corner of the court.  These lights created those weird four-part shadows that show in every direction.  Only darkness lay beyond.  These intense and stark lights, along with the complete lack of activity throughout the neighborhood, made him feel incredibly lonely.  As he thought about this memory, he began to question it.  He couldn’t pin down when this was, approximately how old he was, who the people were, why they were there – wherever they were, why the rest of his family weren’t there, or if this was a completely invented memory.  He was not very old, so this stuff should’ve been much clearer.

He was certain that his Mom would’ve turned every light in the house on day and night, if she had the option, but no one else wanted that.  She loved light.  He started to understand, as he looked at all of the dark residences.  He longed for a window with light and life coming out.  Sure, each apartment complex had street lighting and strategic light posts in and around each pathway, the parking lots, and the doors of each unit, but those only highlighted the sheer stillness.  No activity could be seen.  He began to imagine birthday parties inside, or other fun memories and moments, but could not conjure anything, but empty spaces, or people alone, motionless, in front of a TV.  He decided that it couldn’t be all that bleak.  He remembered how he used to sit for hours staring into the lights of his stereo, as he listened to the radio stations fade in and out, afraid to turn it off, in case he might miss that one important song that would change his life. 

 

He had other basketball memories.  When he played on the High School team, the two best teams in their league were also the two biggest schools.  Both of them had weird lighting in their gyms.  It’s no surprise his teams’ had little chance of victory.  One of the gyms had strange blue-ish lights that made everyone look like a corpse.  It actually made everyone’s lips look blue, and everyone felt sluggish and weighed down with heavy limbs.  The other looked like an old cabin in the forest, which was lit by about a dozen bare 40-watt light bulbs.  It was dark and creepy like the old slasher movies that he had been exposed to far too early in life.

He drifted off into more thought.  There is probably some sort of science to how lighting dictates mood and entire communities who are hyper-aware of how different lighting effects them, and do their best to control it.  If only he cared enough to look it up on his phone, but he only got so far as pulling it out of his pocket.  Then he started thinking about lights in the classrooms he grew up attending in school and in his workplace.  Upsetting at best.  Then he started thinking about those who are into controlling their lighting environments – it must be be exhausting.  He guessed that being too aware of how light can affect mood could make one too sensitive, so in effect cancelling the entire point.  We cannot control most lighting we’re exposed to and it can truly be disconcerting and uncomfortable at times.  For example, the lighting on this bus is startling and disturbing.  It makes everyone look weird.  It’s set for night driving, it’s a dark red near the driver, but bright in the rear to a point where you can see everyone’s blood vessels.  He decided to open his phone to social media to pass the time.  Isolated with about 30 other people nearby.