The Taj

Marlou wakes in the late afternoon.  She is propped up in bed, and the propping is done by an electric motor which raises and lowers each half of our queen-size in the hospital style.  We bought the bed at the urging of my prescient brother and sister-in-law.  And now we're set up and Marlou is propped up and if she would just stop throwing up, conditions for comfortable death could be said to be perfect.

At times the agony of this seems to border on the irresponsible.  I have the conviction, quite certain, that malfeasance or malpractice or malevolence lie at the heart of Marlou's protracted misery.  I'm going to sue.  

At other times, Marlou's slow death seems to be squeezing out truth after truth, revelation after revelation.  Her outbursts of anger, some have advised, may derive from the same brain tumor that is squeezing off her power of speech.  I prefer my own explanation, that at this late moment all pretense has dropped and she is simply, unabashedly, furious.  Conditioned by my mother's volatile anger, I flinch at the earliest warning signs of female attack...but there's no time for that right now.  I have to see things in perspective, and quickly.  Marlou forgets half the things she says.  She has lost track of days, thinking yesterday's visitor was here this morning.  So she erupts, I erupt, and now the whole thing has to be over in five minutes, because we may not have ten.

My current team of psychological and spiritual advisers has swelled to such proportions that I am urging them all to form a union.  Pay their dues, gather at the hall, then go out on strike.  I'll provide the signs.  There are too many people offering me advice and personal growth these days.  And there are not enough.  In the evenings, after a long day of bedside living, my visiting sister and I try to go out for an hour's escape.  Marlou's parents stay behind.  I worry every moment I am gone.  I fear that I will miss the final moment.  And what is there to fear?  What will happen at the very end?  And don't I fear the very end more than I fear missing it?  There's no escape.  Everything orbits about the central event that has yet to occur.

Sitting up in in our levered bed, early evening advancing, Marlou looks at me.  She is the victim of an ordeal, drained and not entirely here some of the time, yet still occasionally quite lucid and specific in her thinking.  At this moment, she stares at me with the blackness of the unseeing.  There is no expression about her face.  Her eyes register mine, unguarded in the openly uninterested way of strangers.  Like everything else, I must not take this personally.  Marlou is going away.

And yet the moment I go away from her bedside, she whispers, barely intelligibly, to any available nurse or friend...take care of Paul.  I'm not sure what care she means, nor am I certain what part I play in this.  Several of the hospice team has suggested that I should reassure her of my wellbeing and prospects for continuance.  Surely Marlou knows I am made of sterner stuff.  But do I know?  What really will happen after I have spoken at the redwood chapel, driven to the Monterey coast as instructed, and released what is left Marlou to the Pacific breeze?

Because the future is a blank, I try to fill in pieces of the past.  I am glad that on several occasions, not many and not enough, we danced, in our fashion.  A birthday, hers or mine, New Years, and now and then just a moment, I would stand, hold onto her for support and lean in a rhythmic sort of way.  Earlier in my disability, I had the neuromuscular wherewithal to actually move around and managed something of a step.  But now, my balance is gone, so I rock to and fro.  What overwhelms such moments is not the physical challenge, but the poignancy.  The intensity of what I have lost always rises in me, but so does Marlou's smile, all encouragement and enjoyment.  For my hand is in the small of Marlou's back, her eyes are on mine, and everything about her tells me that I am her man, that I will do, and this will do.  The man leads.  I can feel how that is.  And so can Marlou, and so this thing is built and shared until, stamina being what it is, we reach the end.  The end of some little number by Bill Evans, who long ago reached his.  "When I Fall in Love."  Love is ended before it's begun.  But there is the music, and the two of us have captured it, even if I'm soon back in the battery-driven mundanity of my clicking wheelchair.

Recently, our medical life had achieved a twisted normalcy.  Our friend Laurel who introduced us in Sacramento a decade ago, stays a few days.  This is followed by my brother Richard and his wife Debbie, Marlou's friend Liz who is miraculously an RN, then my sister Susie.  Then through next week Laurel, Liz, my brother and sister-in-law promise to repeat the pattern...all of this reassuringly plotted in my calendar book.  Together, we have even witnessed progress of a sort.  The toing and froing of hospice nurses, our insistent reports and the occasional wheelchair dash to Walgreens seem to finally have quelled Marlou's nausea.  She sleeps all night.  Sometimes, I come close.  Until this morning.

Marlou wants you, my sister told me over breakfast.  I rolled towards her cluttered, wheelchair-inaccessible bedside.  I told my sister I couldn't stand the situation, finally insisted that chair and commode and electric heater give way for me.  My sister, who is gifted with a penetrating gentleness, put her hand on my shoulder and spoke the pathetically obvious: this is your wife, this is your home.  And so I rolled close to Marlou, instead of lying beside her in bed and exchanging sideways glances, now staring face-to-face.  She was in the midst of reaching for her water glass.  

I have come to accept the preposterous fact of cancer from the abdomen blossoming in the brain, and years of rehabilitation clinics and hospitals have inured me to the varieties of paralysis.  So there's nothing surprising to me in the way Marlou turns her head, trains her eye to the left and directs a hand to a small water glass with straw.  An inveterate muscular dystrophy person will do much the same, shoving the vital hand with a waning shoulder toward its target.  What strikes me is Marlou's extraordinary grace.  She is so new to this, yet she has adapted naturally, with serenity, and, yes, she has made it to the water glass.  She moves the drink toward her mouth.  It slips from her fingers, crashing against the wooden bedside table.  Her eyes close in exasperated pain.  Honey, I tell her, me, it's okay.  Here.  She waves away the straw.  All this is happening to her, but it feels far too much like me.

The drink can wait, she seems to be saying.  Her speech is so soft and garbled that conversation exasperates both of us.  Still she is clear on this point, that recently she has had a sinking feeling.  She sinks and sinks, goes down and down, and wants me by her bedside.  I tell her she is beautiful.  She is my love.  She is my wife.  Yet now something opens in me that is terrifyingly hollow and would weaken me at the knees if I was standing.  It's bad enough sitting, and I lean forward resting my head on her hand as though this move is affectionate.  It's not.  I'm simply collapsing.  Outside, I hear someone approaching the front door, Marlou's mother opening it.  Arnie.  It's my friend Arnie.  I call out his name, now there are three of us, and there is a hand on my shoulder.  

Think I'll stretch out, I say as nonchalantly as possible.  Sliding from my side of the bed to Marlou's is a protracted physiotherapy exercise, so I don't even pretend.  I ask Arnie to swing my legs into position, shove my torso toward her.  He does this, then gives Marlou a hug.  Him too, she says, meaning me.  We all laugh, Arnie rubs me with his beard.  And Marlou and her humor are still there.

I try to tell her that she will still be there after she is gone.  This is supposed to help Marlou let go, and although dutily I have said these words, I am not sure what they mean.  Except perhaps in moments.  It was back in the last era, the Age of Carpeting, two weeks ago, that Marlou took a post-nausea-pill nap and I sneaked out of our hotel for an afternoon matinee of "Slum Dog Millionaire."  The film meant nothing to me.  It seemed slight, but I was hardly in a fine mood.  But the scenes at the Taj Mahal ring clear as a bell.  If you love a woman, and you lose her, and you have the bucks and you get the zoning permits, what else are you going to do but build fountains and domes and towers and reflecting pools?  

And only two days ago, at a point too late in the afternoon when Marlou's father and I had gotten to Peet's for a double espresso, and had finished discussing the particulars of funeral arrangements, I rolled up to the counter to purchase teabags.  The clerk had that haggard, end-of-shift look that comes of a day of caffeinating Silicon Valley's most avid.  She also had flashing eyelids, high cheekbones and a ready warmth.  She remembered my name, smiled, wearily recommended a green tea and did everything to reassure me while I fumbled with my MasterCard, that for this mercantile moment she was mine and I was hers.  I wanted to tell her, and the words were half out of my mouth, how lovely she was.  And I knew immediately that this impulse comes from Marlou.  That in ten years of marriage, fear of women had given way to love of women.  And love is love, and male love is naturally a little indiscriminate, and that's okay.

Maybe it's all okay.  Sickening and sad and infuriating.  But indisputably life.