Sunday, December 19, 2021

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 3rd.  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.



Monday, September 6, 2021

There's A Place

 


There’s rarely a time, I am not thinking about the mix tape I made for someone in 1993.  For some reason I tie a lot of importance in those tracks.  Maybe because it’s the last time I felt truly alive on a daily basis.  I may have been despondent, lonely, depressed, and uncertain, but I was still filled with desire and energy, and strangely, hope.  In June of 2020, this lost mix weighed heavily on my mind and I wrote about what may have been on that mix with a piece named “It Isn’t Forever” (seen here). 

 Well, not that anyone cares, but I recently remembered another song that had to have been that mix.  Released early in 1993, was an EP by the UK band Moose named “Liquid Make Up.  The second song on the EP is named “There’s Place” and I used to listen to it on repeat endlessly.  It was by far my favorite song on this new collection, which was strikingly different from their previous first four EPs, which were favorites amongst the multiple EPs that were coming out of the amazing UK indie scene in those days.  Suddenly, the noisy, loose, and jagged sounds were now breezy light pop, sometimes including whistling (the shift was hard to adjust to on the debut LP …XYZ).   It was a shock the system, but “There’s A Place” bridged that gap beautifully with its breezy guitar strum, wandering bass, and a smooth shuffling beat.  It’s a song that evoked its title in sound.  It could transport me to another “place.”  It was a dream that I could not get enough of, and it made the new direction Moose had turned more palatable.  It was also perfect for this particular mix, because it fit musically, but also its sense of re-generation (“when day is done / I’ll take my body home”) and acceptance is powerful and meaningful.  Now that I’m older, it feels like more of a sad song, and though I still wish there is a “place,” a place of peace that I was so desperately searching for while recovering from brain surgery early this year, but I haven’t even felt at “home” in decades.  “When all is gone / I’ll take my body home” takes on an almost cynical tone to me now.  It’s still a masterpiece.  I can still listen to it on repeat without ever tiring of it.


Moose "There's A PLace"