."The Time It Really Hurt, Pt II"  
16 (of 16) SLIM D Jan. 28, 1989 at 21:52 (9438 characters)
 
The catheterization showed that the work done in my previous
surgery had deteriorated.  Valves had started to calcify, and
arteries were becoming increasingly blocked.  It was no wonder
at all I'd had growing arrhythmias and palpitations.  The stress
on my heart had become a very substantial thing.  I was put on
diuretics (to reduce water retention) and a limited salt diet
(not, thank god, a *no salt* diet) and scheduled for surgery in
March.
 
I'm not sure how to describe my feelings about heart surgery
after the first one.  I used to tell people that everyone ought
to undergo major surgery at some point; it is incredibly
eye-opening.  You find a different set of values when you lie
there, letting a machine breathe for you because you cannot do
it yourself; and when your parents come into intensive care to
visit you, you can curl your fingers to touch their palm, but not
your lift hand.  They have to roll you head to look at them if
you were left (during change of sheets) facing the other
direction.  Somehow that changes what helplessness feels like.
 
But Open Heart Surgery is no fun.  The most physically painful
ten minutes I've ever lived though were those when they pulled
the hundred stitches out.  And I don't know how to describe what
helplessness like that does to you.  You are too helpless to
care about it.  I went to sleep in five minute sections,
because I would forget, in my sleep, in my exhaustion, to
breathe.  *I* was not capable of breathing, but the machine
which pumped air into my lungs required a small, token pull of
air to trigger the cycle.  I wasn't sure my chest muscles could
keep that up all night (they'd had a hard day!).  In hindsight
I cared a great deal about it all.  At the time?  I don't
really know.  I was too exhausted and fuzzy to remember.
 
I went into the first surgery not knowing what lay ahead except
that it wouldn't be easy, but if I survived it (80% chance) I
would end up with a functionally normal heart and a life
expectancy longer than five years.  It was awful.  7 hours on
the table, 4 of them on the heart/lung machine.  Bleeding
problems.  Severe tachycardia within hours.  Double pneumonia
within days.  I escaped intensive care and then went back three
times.  More than twenty days between the surgery and my
release.
 
But my fingernails turned pink.  A seemingly tiny thing, but
seeing them for the first time since surgery (and the first
time in my memory that they were the right color--pink, not the
blue/purple of a cold, exhausted swimmer's lips) gave me the
knowledge that my circulatory system had been *repaired*...
that
      *no matter what*
                        it was going to be worth it.
 
Going into surgery the second time was a great deal worse than
the first time.  In fact, if my worst physical pain came during
the first surgery, my absolute worst lifetime mental anguish
happened in the two months prior to that second surgery.
 
I knew how horrible it would be, the pain, the helplessness,
the suctioning of lungs (to remove the phlegm that causes
pneumonia), the terrible dark hours.  And I wasn't going into it
with the promise of a new life, it was an effort to gain back
what I'd had and lost, a dreadfully painful exercise which
might result in normality again.
 
I went into it with all the black, terrible fears that the
first experience could instill in me, and absolutely none of
the hope.  I don't know why the hope was missing; surgery I
faced would (presumably) leave me in exactly the condition I'd
been in after the first time.  But my *right* had been snatched
away from me, terribly, and now I was being asked to buy it
back at a cost counted in my own blood, torture and misery.
 
The surgery was easy.  An absolute piece of cake.  Three hours
on the table, 1 on the h/l machine, I was conscious by noon.  I
felt fine, I had no long daze or period of helplessness.  I'd
been through pneumonia once and this time I *worked* at the
coughing, though it hurt (can you imagine what coughing is like
just after they've sawed through your sternum?).  They kept me
in the hospital eight days, but I could have gone home in five.
I was walking around before I left intensive care.  I told
them how much my first stitches had hurt, and (though I don't
think they believed me - "It's not really that painful!") they
doped me to the gills on morphine for the experience, and I
didn't care whether it hurt or not.
 
It was a textbook perfect recovery.  An amazing letdown (don't
believe that for a second!) after all my terror ahead of time.
 
Only...  something was still wrong.  The recovery was rapid at
first, and I never once went back on heart medication... but
the recovery slowed after a few weeks.  I could walk, but I
couldn't run.  I could lift boxes, but only for a minute.  In
the moment, my activity level was high, but in the long run, my
stamina had vanished.
 
I could do a thing for as long as it took the demand to
register on my heart; and then I had to quit.  I was as
activity limited as I'd ever been... only the restrictions had
eased back a little.  I expected the passage of months to bring
me back to my former condition.  Years....  it didn't come
back.  I complained about it to the doctors, and they'd test me.
"Walk up these stairs."  I'd walk up four flights.  "Splendid!"
they'd say.  "What's the problem?"
 
The problem was I couldn't *run* up the stairs.  I could
before, but not any more.  "Well after all," they'd say,
clucking their tongues at someone who did not understand a
medical miracle, "you can't expect..."
 
But I did.
 
----------------
 
Marte, back when I promised I'd write this episode out for you,
do you remember the context in which I said it?  You said that
breaking up felt like being dead inside, killed, whatever.
 
I'd never been through a trauma with another person that felt
that extreme.  But there *had* been one thing that left
emotional scars so deep and so wide they have had a shaping
influence on me ever since.
 
I've tried to present the events and the sensations as simply
as I could.  But I don't think you'll be able to draw out the
moral that has lived in me these many years since the events.
I suppose what I tell you will be a simplification, that I
don't myself understand it all.  But I think I can make you see
the outline.
 
I was born with a defective heart, and that's life.  It didn't
bother me.  I perhaps wished otherwise, but I never *knew*
anything else.  It was the way things were and by my
adolescence I had a great fatalism for that aspect of myself.
It was not going to change, and worrying only made matters
worse.  It was; and I did what I was capable of, while trying
to keep back the encroaching edges of what I could not do.
 
Then at the age of 17, an entire goddamn world opened to me.  I
was *normal*.  Gloriously so.  I found out what I had been
missing, what I would never have to go back to.  I was cured,
and it was so wonderful, I could hold it to myself 24 hours a
day for a year, and never grow tired of it.
 
*No one at college ever had to know I had a congenital defect.*
 
And then, out of the clean, lovely, wonderful blue sky came a
bolt of horror that tore it all away.  I was not safe, I was
not free, and the illusion that I had been cured, my problems
forever behind me, was utterly destroyed.  No cause, no cure,
no understanding--either my understanding of it, or its being
understanding with me.  You cannot bargain with it.  You push
the limits, you go to the hospital.
 
When the trouble was finally discovered and a repair was
clearly possible, things were better.  I got along well enough
until the surgery, except for my fear and anguish about the
operation itself.  I knew a cure was possible.  I had seen it
happen once.  All right, I'd suffered a setback... but now that
it was on understandable terms, it wasn't harsh or difficult.
More... an annoyance, like someone is being petty about the
whole business.  I didn't *need* to go through this, God, but
if I have to, I will.  The promised land is over there.  I've
been there before, and it's worth it.
 
Only, Marte, the toughest thing about it all was that the
recovery wasn't complete.  I never got it back.  I never found
out why.  I am still subject to tachycardia, I still have
energy-limited periods, I've averaged 3-5 days in the hospital
per year since then, all because of my heart.
 
The dreadful, damn, scarring truth is that the cure was a lie.
It was whim, provisional--but not with provisions *I* can
understand or meet.  I will never get away from it.  I've seen
freedom, tasted it, grown to love it and to find it natural.
And I can never again in all my life recapture it.  I live for
this month when things are fine; and for being able to run up
four flights of stairs on my good days.  But I don't expect it
to last.  It never has.
 
The dream was shattered, and they tried to fix it, and it never
mended.  I've got a pacemaker now.  My third, actually.  I'm
guaranteed, even if all else is perfect, that at least one week
every five years I'll spend in the hospital getting batteries
changed.  It's not even there because I need it.  It's there
because they know they may have to put me on such a dose of
medication one day, that it would endanger my life like the
other time.
 
I'm not free.  I've been more than an hour from the nearest
hospital since then.  But not blithely, innocently, without
thought.
 
Like for one short sweet year I could.
--Slim D.
  

.