Acknowledging the Darkness

In the wake of multiple losses, I haven’t had a choice. The darkness clings to me like a fog, like vapor. The shadow is that space between what I thought I wanted – between the life I would design, were I the intentional architect of my own destiny – and what is.

Disappointment is the result of expectations. We all have them; our minds work overtime devising the best possible future for ourselves. We will find fulfillment in our careers and our relationships, we tell ourselves. We will live to a ripe old age and die peacefully in our sleep, hands clasped, a faint smile playing about our lips. Those we love will enjoy similar longevity. They certainly will not suffer, and neither will I.

Then something happens that clashes with this optimism. Our rose-colored glasses are rudely torn from our faces, and we squint, disbelieving, in the glare of reality. Someone gets sick. Someone gets hurt. A job, even an entire career, evaporates. We throw up our hands and rage at the heavens. “Why me?” we demand. “I don’t deserve this.”

Maybe not, but the universe doesn’t operate on some moral balance sheet, doling out challenges and tragedies only to those who are deserving or feel able to “handle it” at the moment. These things that help us grow – that make us resilient, compassionate, and deep – they hurt like hell and we’d never sign on for them willingly. We are much more content to doze in the back row of the classroom of life.

Ben Franklin said, “No pain, no gain.” To that I reply, “No shit.” Experience tells me he was absolutely right.

Sometimes It’s Better To Be Feral

Morphine made Mom psychotic.  We didn’t know that, but she did.  She refused to take an adequate therapeutic dose, a decision which left her screaming and writhing in pain for a good part of the last 6 months of her life.  It was frustrating (to say the least), but it was her choice.  Mom would take control any way she could.  Control was always of paramount importance to her.

I shrugged off her complaints about the morphine.  She said it made her “feel crazy,” but she always had a litany of complaints about medications.  Her list of “allergies” was long and earned her frowns of skepticism from most healthcare providers. I would roll my eyes right along with them.  “They’re not ‘allergies,’ Mom.  They’re sensitivities.  Side effects.  Whatever.  Not allergies.”

When she was admitted for inpatient chemotherapy last February, it seemed the perfect opportunity to get her pain under control for once and for all.  She was given intravenous morphine.  She said she felt better.  I didn’t say, “I told you so,” but I thought it.  I hoped this would help her see that she should follow the recommendations of her oncologists, who are quite adept at managing cancer pain for most patients.

Then she went berserk. You see, Mom wasn’t like “most patients.”  She was more like a wild animal, the kind that would chew its foot off to escape a trap.  The narcotic-induced psychosis caused her to do all kinds of strange and unadvisable things.  She got out of bed against orders in the middle of the night and fell in the bathroom, where the nurses found her.  She yanked out her PICC line (which delivers chemotherapy into the superior vena cava, its tip residing very near the heart).  Eventually, her psychotic state deepened and she became restless, nonverbal, eyes rolling back in her head, unable to focus.  Still, she relentlessly tried to remove her clothing and groped for the IV poles.

“Don’t touch those, Mama,” I admonished.  “There’s medicine in there that can hurt people if it spills.”  At these words, she would draw back momentarily, then begin again.  She had to be relocated to the room across from the nursing station.  A “sitter” was assigned to stay at her bedside at all times.

Of course this dismayed me, but since I work in the medical community, for some of the very same doctors who were caring for Mom, I was also a little embarrassed.  I wondered, Why can’t Mom behave herself?  Why can’t she be a “normal” patient?  I knew she couldn’t help it, but still.  She was causing everyone so much trouble.

With reversal of the narcotics, my mother returned to lucidity and could be informed of what we, the family, already knew: the one scan she’d held still enough to complete showed her cancer had literally “exploded,” now occupying the vast majority of her left thorax.  There was disease in the contralateral lung and both adrenals, not to mention her ribs and spine.  Chemo was pointless.  The orange drip was disconnected.  Without the whirr and beep of the pumps, the hospital room was quiet.  She would be discharged on hospice.

“They’re sending me home to die,” mom said tearfully in one of the few instances when she gave in to despair.  She was right.  They were.  It was the prudent thing to do.

I try to be gentle with myself.  After all, it wasn’t my fault I didn’t fully appreciate the gravity of her situation.  Even seasoned oncologists were shocked that her tumor had regrown to the staggering size of 18 cm in the three short months following her extensive surgery, during which time interval she was actively undergoing therapy with radiation.  Neither was I to blame for my failure, after a lifetime of hearing her gripe about medications, to appreciate just how severe her reaction to the morphine had been for all the months she refused to take enough of it to control her pain.  As it turned out, it really did make her “feel crazy.”  Go figure.

Five weeks after her homecoming, Mom was gone.  When I think of her behavior now, I smile.  Embarassment has given way to a kind of pride.  In the bigger context of her illness and where she was headed, I’m glad Mom fought like a wild animal.  I’m glad she refused to negotiate with her illness, the drugs, all of it.

She didn’t want to be a cancer patient, a cancer survivor, a cancer anything.  She just wanted to be.

Good for you, Mom, I think. Give ’em hell.  Whatever else I’m glad or sorry about, I’m glad she wasn’t well behaved at the end.  I’m glad she was feral.  Because that was the real her.  Narcotic-induced psychosis or not, that was Mom.  She wasn’t the lie-down-and-accept-it type.  She wasn’t the be-nice-and-don’t-make-waves type.

They say people die the way they live.  She died fighting.  For her, it was the honest thing – the only thing – to do.

Magic in Mirrors

More things of Mom’s keep finding their way into my home.  Just the other day, Dad brought me some odds and ends of hers, including her old stapler.  Apparently, it was something she had before they were married.  Dad loves staplers, so either he was being quite unselfish by passing it on to me, or he feels that he has entirely too much stuff since Mom died and he consolidated two households.

Another item he didn’t have room for, or didn’t want, was her full-length mirror.

“Do you want that mirror?” he asked when he called.

You bet I want it.  I knew exactly which mirror he meant.  Mom always spoke of wanting a full-length mirror, and she finally ordered this one from Pottery Barn.  I’m glad she got to have it…one small dream realized in a lifetime far too short to grant all her wishes.  But aren’t all lifetimes too short for that?

“Where will it go?” my husband worried.  After eight months of assimilating countless books, an impressive array of heirloom furniture pieces, and an extensive collection of decorative throw pillows, it was a fair question.  The mirror is tall and rectangular with an espresso-colored wood frame: simple, modern, elegant, and timeless. (Do you think Pottery Barn should hire me to write copy for their catalog?)  And it is large.

“In the corner, I guess,” I replied.

The mirror was placed in the corner, where it stands, working its magic.  I love mirrors.  They add depth, light, and mystery to a room.  They show us new angles of ourselves, but they are also enigmatic by nature.  Somehow, they seem to represent an answer and a question, all at the same time.  In this way, mirrors both frighten and reassure me.  There I am, but then again, there I am not.

As I look in this mirror, I imagine Mom standing before it, elegant and willowy, giving herself a sharp, appraising look.  Now that it is in my house, I shuffle past it wearing the new fleece monkey pajamas I received as a Christmas gift.  The beveled glass has been anointed with dog slobber.  My elegance, I suppose, is more sutble than hers.

Still, I’m glad the mirror is here.

A Newly Grieving Person

A NEWLY GRIEVING PERSON (April 2012)

My mind feels splintered like a pencil I chewed on because I was nervous.  Now I can taste the graphite, and there’s yellow paint between my teeth.  I understand this is how it is for a newly grieving person.  Anxiety, irritability, distractibility.  It’s all part of the game.

I’ve done okay so far.  Everybody keeps telling me how well I’m “handling it.”  Like each day without a nervous breakdown is some notch in my belt.  Buying into this, I’ve even become a little cocky, proud of my highly evolved coping skills.  “Watch and learn,” I think to myself.  “You, too, will be tested in this way.  Your time will come.”

People are undone by the fact that my 60-year-old mother has died.  Because of my familiarity with oncology, I’m not.  Cancer doesn’t honor our chosen timelines or expectations of a long life.  Cancer doesn’t give a shit what anybody wants.  It doesn’t care that you exercised every day and ate cottage cheese instead of French fries.  It just grows and grows.  The rhabdomyosarcoma Mom had was particularly relentless.

I won’t get too puffed up with pride at everyone’s admiration of how I’m getting through this.  It’s just how I’m built.  I thrive in the face of crisis, though I don’t go looking for it and would do my best to avert it.  When the crisis is unavoidable, I am in my element.

With Mom’s illness, there were decisions to be made, medical situations to be managed.  I could do those things.   Superficiality went out the window.  I was comfortable with the unflinching emotional intensity.  I was diplomatic but firm.  I was confident, thorough, tireless.

But now it’s over.  All that stimulation is gone; my sense of purpose has evaporated.

My mom died three weeks ago.  I cry sometimes, usually in the presence of strangers, which is awkward but somehow makes sense.  I don’t need to be strong for people I don’t know.  Most often, though, I don’t cry.  I walk through my days in a state of hollow expectation.  Mom was dying, and it was such a profound process.  It can’t just be over.  I want it to be, but I don’t want it to be.

I don’t really want to do anything.  I want to sleep, eat, and go shopping.  These are the only things preoccupying enough to be “fun.”  With the rest, I’m just going through the motions.

I’ll be glad I did when I feel better, though.  I’ll be glad I “handled it well.”

Processing Grief: Acceptance

(June 17, 2012)  It is nearly the summer solstice.  I love these summer evenings when the sky glows almost unnaturally into the late hours as if lit by a neon city glow just beyond the horizon.  When the temperature outside feels the same as my skin, I seem to be melting, dissolving into the warm night air.

This year, though, I greet the passage of time a little reluctantly.  Each day takes me further from my mother.  When the weather is almost exactly like a day when I remember seeing her, speaking to her, I can imagine we have just been together.

But now summer is here.  Mom is gone, and the days don’t even resemble the days that she was in.  I can’t imagine us together now.  I am writing a new history, and although she is in it, her role is quite different.  She is not mother, tyrant.  She is not mother, supporter.  She is not mother, I-wish-she-would-be-less-self-centered-and-place-more-emphasis-on-family.  She is a mother of memories, of tearfully discovered pictures, of family members’ sometimes tiresome monologues.  Mom, gone.  What is that?  I am finding out, day by day.

It’s not like when I was little, and I would think about my mother dying and cry and cry.  Just the thought of her being gone registered in my body, a terrible hopeless ache that I couldn’t bear.  The reality of her death is a different kind of sadness, one that is at once awful and bearable.

Even when she was sick, I knew I could bear this.  I was almost certain I would be asked to.  I applauded her efforts at wellness – she never gave up, and I never gave up on her.  But intuitively I did not believe she could be well again in this life.  I believed she would succumb to the cancer.  I don’t feel guilty about this.  My thoughts did not make it so, just like many prayed for her and those prayers did not change the outcome, either.

Cancer is a process that does not care one whit about our wishes or our dreams.  It is simply a biologic sequence of events that, once taken hold, is extremely difficult to eradicate.  Is this tragic, wrong?  It seems that way when it is happening, but no.  It just is.  I have no blame, no anger.  Just the sort of acceptance that is needed to face things I cannot change.