Saturday Musings, 21 March 2015

Good morning,

Morning's darkness tricked me into thinking that I had not slept.  A glance at the clock revealed the truth:  Seven straight hours of slumber, despite two glasses of wine and a salty dinner.  Call me crazy but a third night of sleep in three months, albeit not sequential, seems like a trend.  I've not had three nights of sleep in as many decades, so I'm going to take this as a sign that I should drink more wine or that the new medicine might be working.

Dark chicory coffee and a brief stretch push my brain to something near functional.  The house still nestles behind closed shades.  The dog sleeps though one eye opens when I pass her bed.  NPR rattles on the radio but not loudly enough for me to follow the stories.  It's Saturday; I do not have to work, though work's worries linger.  The slight ring of tinnitus dances in my brain.  I pay it no mind:  Like my sleeplessness, the ringing in my ears has begun to diminish.  I can tolerate its current level.

The new drug which I'm taking either works or is the world's most successful placebo, and I do not care which truth you pick.  Though I'll probably never walk right, and I still have raging neurological pain, and my cardiac spasms have not abated; nonetheless, I count three nights of more than two hours' sleep at a time.  Three nights.  That might not astound most; but for me, the fact that I typically don't sleep more than two hours in a row and lie awake for hours flavors every waking moment.  Anyone with insomnia understands the staggering contemplation of seven straight hours of sleep.

I am reminded, as I sip my coffee, of a rueful statement that I made yesterday.  I wasn't supposed to live this long, I groaned.  Really:  I wasn't.

And so it is.

On Valentine's Day in 1998, I lay in a bed at St. Luke's Hospital and cast my eyes out a dirty window, the pale winter light falling on me so weakly that my tired eyes did not flinch.  An aide stood by my side with a tray of flavorless food.  I shook my head but she pulled the table towards me and clattered the dishes, shaking her head, lifting lids, letting the food's odors waft into the room.  I closed my eyes.  You weigh next to nothing, the woman admonished.  I glanced at her face and let my eyes flutter shut again.  I knew how much I weighed; I knew what nothing felt like; I knew that how I felt was next to nothing.  I can't breathe, I told her, and she hit the panic button.

A ruffle of activity later, I had a mask pressed to my face with oxygen flowing.  The doctor had been called.  My pulse-oxygen read normal but my respiration read dying.  Nobody understood.  I heard murmured talk of the Psychiatric Unit.  I turned my head back to the window and thought about my six-year-old son.

Late in the afternoon, another aide pushed the door open carrying a staggeringly tall vase of roses.  She set the heavy glass down where the uneaten food had once rested and pulled the card out from its little plastic stick.  I studied the typed words.  Two dozen red roses and a note proclaiming affection from someone whom I barely knew.  I cast the card down beside a little shower of petals that had fallen from the bouquet.

The doctors came then, pushing aside the rolling bedside table with its flowers and the discarded love note.  They re-took all the vital signs that the aides and the nurses had taken during the frenzied activity following my pronouncement.  They read the charts; they looked at each other; they pulled on the wires that monitored my weakly beating heart.  You're not getting better, one observed.  We think your body is just wearing out.  At the rate you are going, you might live six more months, said another.  We just think your body has taken all it can take.  Your lungs are just tired.

I pressed the button to elevate my head.  The men jumped back as I rose toward them.  I pushed the clumps of uncombed hair back away from my face.  Dying? I snapped at them.  Dying?  You think I'm dying?  Wearing out?  That's your diagnosis?  I felt hysteria rise in my throat, the same throat which had been sore for five years without any of the white-coated wonders finding a solution.  Well I'm sorry but I'm the single mother of a six-year-old boy who has nobody  but me to take care of him.  I stopped, chest heaving, tears rising in my eyes.  I'm afraid I can't die, not yet.  I will not die!  So just go back and run some more tests.  Or get another opinion.  But. I. Will. Not. Die.

They filed out as quietly as they had entered.  Night descended on my room.  A nurse came and turned on the soft light above my bed.  She brought me fresh water and  a bowl of soup.  I looked at the pale yellow of the simmering broth.  I thought about my son.  With the nurse standing by, silent, waiting, I lifted the spoon and skimmed the soup, sipping, letting its warmth settle in my frail chest.

A year or so would pass before a knock-down drag-out fight between two doctors would result in a shake-up on my medical team.  When the dust settled my condition began to improve. Joseph Brewer, the first Infectious Disease Wizard to take charge of my condition, diagnosed my decline as hypercoagulability caused by reactivation of the virus which had originally caused my medical condition, back in the 1950s when doctors diagnosed all childhood illnesses as bacterial.  But the odyssey that has led me to the farthest western shores of these United States and the Infectious Disease Clinic at Stanford Medical Center began on that Valentine's Day, when a pulmonologist stood in all his white-clad arrogance and told me that I had six months to live.  And while I rejected his prognosis, I admit, now, here, that I have lived my days since then as though I knew their number and had no need for permanency.

On March 04th of this year, my second Infectious Disease Wizard told me that if he had his way, I would live to be 100.  I once promised my son that I would live to be 103, I told him.  His face beamed.  Better still, he crowed in his delightful Colombian accent.  103!  And what a quality life it shall be, from here on out! he added.  If I have my way!

After last night, with seven straight hours of sleep and feeling (almost) rested, I might just be able to believe him.

Mugwumpishly tendered,

Corinne Corley

P.S.  This story might seem a little self-absorbed.  But I share it for two reasons. 

 First, because many people who read these Musings have known of my many medical issues over the last decade and a half, and deserve an update as inadequate thanks for their kindnesses to me over the years.  

But, second, I share this because so many people, myself included, have ailments which plague them and doctors that misdiagnose them.  A dozen doctors, maybe more, have told me over the years that "nobody can have the symptoms you describe, they just don't make sense."  Of course not -- to the closed mind.  If you, or someone you love, has ever been told that doctors can't help you, keep asking.  Somebody, somewhere, will have an answer.  The doctor who gave me six months to live called Dr. Brewer a "quack" to his face, over my prone body during one of my hospital admissions.  I fired that doctor and gave myself to Dr. Brewer's care and here I am, still alive. 

 Ironically, that doctor himself died fairly young, a year later.  I take no pleasure from his death nor the painful mourning that his wife and children must have felt.  But I am alive, because Dr. Brewer intervened and tried something novel that the other doctors dismissed as quackery.  And now, at this juncture in my life, I've given myself to the ministrations of another doctor willing to take a chance on me by giving me a drug recently approved for my virus in part because of clinical trials at Stanford.  So never give up; never surrender; and don't let the naysayers rain on your parade.