Conversations on Death

When the subject comes up and I tell people my mom died in the recent past, I watch them, watching me. They always look uncomfortable, like I’m about to burden them with some embarrassing display of emotion they won’t know how to respond to. The assumption seems to be that I’m sad, even though I’ve said nothing about being sad. They act like we’ve stumbled on an awkward subject that I don’t want to talk about, but nothing could be further from the truth.

conversations on deathOur vocabulary for grief and our experiences around death and dying is dismally limited. Losing my mom when she was 60 was/is a big deal, but I’m not “sad,” exactly, and I’m continually frustrated that I can’t have more meaningful conversations about my experiences around my mother’s death.

Most of my exchanges on the subject are like having an iPod that came with one song on it, and not being able to download more. I put on that same fucking song whenever I feel like music, but that song almost never matches the mood I’m in. I get up and dance to it anyway, because I want to dance and I don’t know what else to do. It’s pointless, boring, unsatisfying.  Continue reading

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Preserving the Moment – Wig Shopping

Recently, my penchant for capturing the everyday moments in life – the mundane as well as the profound – in my writing has been richly rewarded.  An essay of mine, Wig Shopping, was selected for publication in Blood and Thunder, a “medical arts” journal published by the University of Oklahoma College of Medicine.  I am honored and grateful that this piece was chosen and am sharing an excerpt of it here.  The entire piece is available to read on my website, jenniferphelpswrites.com.

Wig Shopping

Published in Blood and Thunder 2013 ~ reprinted with permission

I drive while Mom rides in the passenger seat beside me. She looks smaller than usual Blood and Thundertoday and less sure, her slender body like a finely tuned instrument measuring all the effects of the newly begun chemotherapy. Impeccably dressed as always, she is statuesque in cleanly pressed, stylish white slacks and an expensive-looking black jacket. Keeping up appearances is important to her, but even her ankles look afraid in those tall, impractical high-heeled shoes she insists on wearing. Her shoulder-length blonde hair, which will most likely fall out from the chemo, is intact for now and displayed almost reverently, a solemn reminder of what is soon to be lost. When I look at it, I take a mental snapshot to treasure in the months to come.

I made the four-hour drive from Redding to Santa Rosa on Friday afternoon to support Mom through her first cycle of chemo. Having prepared myself for every possible combination of vomiting, fatigue, lassitude, and her stubborn and sometimes hostile brand of self-preservation, I was surprised and pleased to find my mother feeling relatively well on my arrival, about 24 hours after her first infusion. She is a highly sensitive person and talked about her keen awareness of the cytotoxic chemicals at work in her body, but we also chatted about my job and family, took a walk through her old, upscale neighborhood, and even went out for a pizza dinner. Because it was Halloween night, we retired early from the party atmosphere that was building outside on the street. We curled up on a couch in the darkened house sipping Diet Cokes, watching I Love Lucy DVDs, and hiding from the throngs of trick-or-treaters.

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Why I Write About My Mother Dying (and Other Imponderables)

Someone once remarked to me that my topics here on the Naked Notebook could be considered “depressing.”  Frankly, this observation surprised me.  Exploring themes of grief and loss, as I have been doing lately since the death of my mother, has never seemed depressing to me at all.

But the comment got me wondering: why do I write on these topics?  What compels me, Where earth meets sky and in betweenwhen I take pen in hand, to tell of my mother’s death?  To write of how, in dying, she was somehow larger than when she was living?

Then I remembered.  I don’t really write my posts at all.  They write themselves.  That’s how I know the notebook is truly “naked.”  My posts are the truth.  Maybe not the whole truth, but nothing but the truth, all the same.  It’s like I’m a windchime, and words are the wind.  I make a pretty sound from time to time, but it’s really the wind that’s doing it.  I’m just hanging there, waiting.

Maybe I’m reading too much into the whole “depressing” thing, anyway.  It’s entirely likely that my subject matter is not responsible for that perception at all.  The Naked Notebook’s monochromatic color scheme alone could be to blame.  I didn’t choose it to be funereal and macabre.  It’s just that I’ve always been drawn to darkness.  When I was 5, black was my favorite color.  I even insisted on black gravel in my fish bowl.   A photo in black and white, to me, instantly looks at least 20 percent more artistic than its color counterpart.  That’s just how I am.

Blacks, grays, they’re edgy.  I’ve always loved edginess.  In music, in art, and in people.  Things that walk the line between dark and light.  Because that’s what we’re all doing, every day.

Anyway, enough of this pseudo-philosophical crap.  I’m talking about my blog.  Specifically, whether the Dead Mother Posts, as I so irreverently refer to them, are depressing.  I certainly don’t think so.  I’m not feeling depressed when I write them.  I may be feeling acute, maybe even melancholy at times.  But that’s the richness of life, isn’t it?  Deep feelings, both good and bad.  It’s not all sunshine and roses, in case you hadn’t noticed.  Yeah.  I figured you had.

I would never have believed I’d be quoting reality TV’s Dr. Drew Pinsky, but he said something on an episode of Celebrity Rehab (everyone needs a guilty pleasure, right?) that stuck with me.  He said that he’d always considered people who were capable of deep emotion to be strong, not weak.  (He was talking to Heidi Fleiss at the time, so he was, no doubt, really reaching deep into his proverbial bag of tricks.)

Never mind the source; I love the sentiment.  I, too, admire people who do not shy away from the difficult, the poignant, the acute.  I don’t mean wallowing…I mean possessing a willingness to go there, to learn the lessons, to be with the experience.  Whatever that experience may be.  It’s not negative – that’s a value judgment.  It just is.

So here I am, mining the depths, holding my breath, diving down.  Coming back up to the surface, humbled but stronger.

My readers, you get it.  You have been supportive, receptive, empathetic.  You don’t flinch in the face of deep emotion.  You, too, are strong in all the ways that matter.  And I appreciate you more than you know.

My husband, who does not consider himself a writer, said it better than anyone:  A death is as astonishing as a birth, he said.  How very, very true that is.  Astonishing.  I’ve witnessed an astonishing experience.  And I’m writing about it.

My mom herself explored these ideas.  She devoted much of her adult life to the study of grief and loss.  As a Marriage and Family Therapist, her emphasis was complicated grief.  I feel I am honoring her by learning all I can from her illness and death.  My grief isn’t complicated – at least I don’t think it is – but it’s mine.

That I ruminate on those experiences isn’t an expression of sadness…it’s an appreciation for the complexity of being human.  It’s not about having a happy life or a sad life.  It’s about having a full life.

So if there is a reason for the Dead Mother Posts, I suppose it is one of self-discovery, of honoring the moment.  I haven’t written these posts to depress my readers or to marinate in misery and self-pity.  An eternal optimist, I’ve never been good at any of those things.  But I am a contemplative person, and I want to give this time in my life its due.

After years of rejecting the idea, lately I’ve come to embrace the fact that I am, at least in part, my mother’s daughter.  She would be pleased that I’m taking the time – and making the space, here in the Naked Notebook – to work through things in my own way.  She’d like the Dead Mother Posts.  I’m just sure of it.

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.

wolf - national park serviceI 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.

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.