Featured on Nailed Magazine – Deathwish

Nailed Magazine is rich with raw, edgy, breathtaking art and writing.  I’m honored to find myself in such superb company.  Below is a short excerpt…click the “read more” link to visit the site and readJennifer Phelps on Nailed the entire (short) piece:

By the time I arrive, my mother’s body is already cooling in the bed, transitioning from animate to inanimate.  Her forehead is now the temperature of window glass on a late spring morning.  Read more on Nailed….

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The Language of Death (or, Why Can’t We Talk About What Actually Happens?)

Since my mom died, I’ve noticed a phenomenon: people avoid the word “death” and all its conjugates.  They pull on latex gloves of language and hide behind germ filter masks of syntax, treating the subject as if it were contagious, substituting cumbersome IMG_20130404_165651_005euphemisms like “passed away,” “passed,” or the clinically sterile preference of health care practitioners, “expired.”

These people who recoil when I say “my mother died” are probably the same ones (and I’m assuming here, because I’ve never broached the subject with them) who regard the funeral practices of yesteryear as morbid.  I admit even I find it a little distasteful to think of a deceased (dead) relative lying in state in a flower-bedecked parlor for the days leading up to the funeral, allowing family members to bear eyewitness to the various stages of decay and putrefaction that naturally commence postmortem.  But aren’t we modern-day mourners truly the more morbid, so afraid are we of the eventuality of death that we cannot even speak of it directly? Continue reading

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.

trees in fogDisappointment 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.

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.

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.

Chicken and a Walker

I was cleaning out my car the other day when an old sticky note clogged the vacuum nozzle, sucked up from the crevice between the seats.  On the paper were written two words:   chicken and walker.

Finding this, I had to laugh at my discovery.  Just as my messy car represented the way I’d had to prioritize my time away from taking care of myself while my mom was dying, this short shopping list stood for something else: the way life goes on, even in difficult times.

The particular day on which I wrote that list doesn’t stand out in my mind, but I remember well the tricky high-wire act of balancing my mom’s needs and my regular busy family life during her illness.

Clearly, on that day, I needed to get Mom a walker, and I needed to decide what was for dinner.  Participating in everyday activities was a challenge during Mom’s illness.  I didn’t have time for everything I wanted to get done, but at least attempting to do ordinary things kept me sane.  Instead of being consumed by the crisis, I had an excuse to dip back into normal.  Even when it was inconvenient and there were more pressing needs over at Mom’s house, it felt good to momentarily surround myself with the mundane treasures of everyday existence.

When I located a walker and brought it to my mother, she gave it dirty looks like she was trying to set it on fire using pyrokinesis.  The rest of us were glad she had it.  She had grown quite unsteady.

Watching Mom lose the ability to do even the simplest things (at one point she fervently told me she would rather be scrubbing toilets) helped me appreciate “the little things in life.”  Sometimes even vacuuming is a luxury.  Or cooking chicken.

I don’t specifically remember making chicken that day, though I’m sure I did. People had to eat.  At times I felt surprised and even a little guilty to find myself hungry, like my desire for food meant I had lost sight of the more important things going on at the time.  But food is important, too.

My dad and I quickly discovered that as caregivers, we couldn’t give much unless we took care of ourselves.  There were a few encounters with the bedside commode that extinguished our appetites, but for the most part we ate.  We drank.  Sometimes we ate too little.  Sometimes we drank too much. But sometimes we were even a little merry.

It was a poignant time.  Caring for someone in such an intimate way is a profound privilege – and an enormous responsibility.  There we were, my original nuclear family – my mom, my dad, and myself – together, making it work one last time.  I cooked the chicken at home and brought my mom the walker she needed.   Nobody starved, and nobody fell.  I did the best I possibly could.  And I think it was enough.