EVERYTHING

It started like this:  I couldn't sleep.  My head hurt.  I walked the hall.  In the bathroom I bashed my knee on the vanity.  My teeth hurt.  I felt my head.  A knot, two or three.  What is it?  What are they?  In the morning, I was exhausted.  I couldn't get out of bed.  In a day or so I recovered but spiked a fever.  My knee was lividly, shockingly bruised.  Nothing else, chills.  But then it started again.  Head.  Teeth.  Unspeakable fatigue.  The doctor said, see your nail beds...they're all one color.  Look at mine, contrast.  I want to do a blood test.  Diagnosis. Biopsy.  Diagnosis confirmed.  Things went very quickly.  Few options, little discussion.  Actually, lots of discussion, but just spinning wheels, no grain to grind.  Here? Somewhere else.  When?  Soon.  Move to Baltimore, commute to Baltimore?  Move.  Then commute.  10 months of poison.  Miss thanksgiving.  Infections.  Fevers.  Blood so thin vaso-pressers hung.  Remission.  Two years.  Good years.  Great years, with gnawing dread of relapse.  Then,  relapse.  Back to Baltimore.  Trial.  Trial failed.  Standard salvage.  Standard salvage failed.  And it was brutal.  Torture.  10 mos of poison distilled into two weeks.  No choice.  Down to my last.  More fevers.  Steeper, stranger fevers.  Fevers with nightmares of shrinking, shrinking, diluted, what? Self?  Too small.  Way, way too small, smaller than sand in space bigger than space.  The infinitesimal versus the infinite.  Terror dreams.  And infections: Gram negative, fungal.  Nasal biopsy, gum biopsy.  At any hour.  There was no day, no night.  MRI.  Scans.  Infection came millimeters from gray matter, the point of departure.  What time is it?  It doesn't matter.  Surgery.  The surgeon said successful.  Surgeons always say successful.  Another one.  The surgeon said successful, truly.  Yes, success against infection.  Disease still galloping to the gallows.  Refractory disease.  This is a synonym for incurable.  They sent me home with oxygen and a special potty.  How long? I asked.   Weeks.  Months. Hard to say.  But no more?  Probably not.  Sorry.

New trial.  But first: qualify for new trial.  The lowest point.  Lowest.  I gave up.  It's the truth.  I quit.  I didn't have anything left.  Couldn't do it anymore.  I wanted to go home.  I knew what that meant.  Still wanted to.  Could only figure I deserved it.  But for what?  I don't know.  Something. . .something.  Wanted to go home; it was probably gonna be hard, hurt, wanted to get it over with.  Qualified anyway.

New trial works.  New trial is a miracle.  New trial is 9 hours away.  Six months of weekly trips nine hours away.  Flights.  Cancelled flights.  Hotels.  Taxi cabs.  Diners.  Chinese food.  Donut shops.  Cellophane crackers.  Remission.  Transplant.  Transplant is worse (repeat: worse) than above but with hope. Drugs and drugs and drugs and drugs and a suppression of the self, a scrambling, blotting, eclipse of the self.  And the blessed German woman, just like me whoever I am, was.  Sorta.  Pain, loneliness.  So so lonely.  Suffocating solitude.  Even with people, lonely, desolate.  Far far far away.  Who am I?  How did this happen?  What will happen to...where is everyone? Who are the people?  How could I have done this to my wife?  What is this?  The asking asking asking echoing off the canyon walls of my heart ceaselessly, keeping the brain awake.  4, 6, 12 days.  No sleep.  More drugs.  Day by day.  You might live.  But what kind of life will it be? Who are you?

Still working on those, but I came home.  A year ago today.  My wife's birthday.

In this time people told me: the names of doctors.  Herbal cures.  They were so, so sorry.  Told me not to worry.  They told me God had a plan.  That everything happens for a reason.  They wanted to help.  Some wrote, but didn't say anything.  Some said the perfect thing, naturally without trying, without words even.  Some wrote letters I read over and over and over and so many times that to unfold them now makes me nauseous with transport back to that time, still I can't throw them away.  Some said they were coming to see me or were going to call.  But didn't.  Some came to see me but the visits were hard.  They wanted to see me, but could only look at me.  Some sent greeting cards and emails.  They said:  I can't believe it.  I'm sorry.  I can't believe it.  Im praying for you.  They told me you should give your life to Christ.  You should get right with god.  You should ask forgiveness.  Some of the people who said stuff like this were well-meaning and sincere, if you can imagine, and some of the people who said these things were guilty guilty people probably hoping for a way out.  Some people sent blankets and food and slippers.  Some people asked after me.  It was a death watch there for a while.  In the darkest days, some just came to see what it looked like.  They had good pretenses, honest covers, but think how powerful curiosity can be.  Some people think a dying man is a medium, a hotline, a stigmata.  They just want to know, hear, touch the hem.  Some people, plenty of people, enough people--I call them friends--did it just right.  They fixed my house.  They watched my kids.  They helped pay bills and they didn't want any recognition and they didn't pretend that they wanted no recognition.  They just did it and said, forget about it.  They sat with me, hours and hours and hours and hours.  If I was asleep or awake, they were there.  They didn't need anything, they just sat or read or talked or didn't talk.  They traveled very far just to sit with me.  They knew flowers don't rally and hams don't count.  Not the way we want them to, the way we wish they would.  They're not wrong but they don't matter.  Lots of people, you're probably one of them, understand a dying man is just dying and might need company, his house cleaned, his wishes heard, his memory stoked.

Look, people say and do stupid shit.  I'm one of them, the people.  I say and do stuff I regret.  I don't get it right.  We don't mean it.  It's takes work, getting it right, and you could still get it wrong.  You have to concentrate.  You have to be honest with yourself.  The self is such a sucker, so easily lied to, so easily deluded, drugged.  And honesty is hard or it seems that way.  But you can get better at it.  You can improve.  You have to practice.  Be honest.  Not mostly.  Totally.  Unvarnished.  All the way.  HONEST.  Don't flinch.  If you know, say.  If you don't know, say that.  Most of the time you don't know.  We don't know.  Face it.  Admit you don't know.  You can take a guess, you can say from past experience, but you dont know.  You might want it a certain way, wish it, pray for it.  But that's not knowing.  It's okay not to know.  We don't know.  And that can drive us back, make us angry, defensive, agressive, protective, stingy, hesitant.  Don't do that.  Be honest.  And generous.  Give and give and give and give.  It's not really that simple.  That's a tricky part:  There's nothing simple, nothing's cut and dried.  Its all wild and complicated and nuanced and messy and sometimes there's no right, only wrongs.  But being honest and generous is the right place to start.  Start at the right place.

I had a notion to give some of those people a piece of my mind.  Tell them what I think of advice and cures and prayers and oh man ....but I don't want to do that anymore.  I don't know.  I don't know.  Don't blame.  Be kind.  Love everything.