WALKING HER HOME

Adrift. That’s the word that floated into my teary vision as I sat in my car outside the facility my mother has resided in for the past seven years. These after-visit pauses have become part of my ritual in the past few months.

There is always someplace else I need to be, fitting in my mother’s care and comfort as I do between the over-arching needs of my autistic daughter and the other pieces of my life’s work. I just can’t seem to rush off the way I used to, though. I need these little islands of time and quiet to process the latest iterations of mum’s decline. The downhill roll has picked up speed, it seems, as she moves ever closer to the time she’ll leave her body.

My mother and I have talked about dying, death, and the afterwards for decades, beginning when I was a teenager. Sometimes in snippets, sometimes in long, deep conversations, we’d discuss some new perspective one of us had gained through a book, a life shift, or our individual growth. We share more than a few overlapping beliefs about the life of the soul. It’s a sturdy connection between us, a deep comfort during this time where so much is tenuous.

Mum’s body is weakening. At 93, cancer and several peripheral conditions seem to be simultaneously consuming her from within. Her cognition is variable, too—sometimes sharp and clear, her signature intelligence and humor intact and vibrant. Other times—more frequently by the week now,—she is confused, delusional. The combined body-mind decline makes it exponentially harder for her to complete simple tasks like getting dressed and staying hydrated. She chafes against what is happening, has told many in her web of family and friends that she’s lived long enough, has no intention of reaching her 94th birthday. At least once a week, we’ll have some iteration of this verbal volley:

Mum: This isn’t the way I planned for things to go.

Me: I know, but we don’t get to choose.

Mum: Yeah, but this is taking too long.

At which point one or both of us will manage a wry sigh.

Mum has been traveling a great deal lately. She’ll relay her trips to me and my siblings when we call or visit.

I’m exhausted. I was in England last night.

Oh? Where in England?

At the palace.

or

I was up in Maine with so-and-so. I had to sleep on the uncomfortable bed in the cabin. We couldn’t get back here until today. I am sooo tired.

Several times, she’s been upset, almost frantic, wondering where we (her four children) all are and what she is going to cook for our supper. There has also been frequent mention of a baby that she needs to take care of. She isn’t sure whose baby it is, only that the child is in her charge.

My late father has shown up a few times, too. Though they were divorced in 1976, his appearances seem benign, even welcome.

She will often be at least partially aware that she is describing an illusion, but each feels very real to her. I think she is straddling different dimensions, moving almost fluidly between them. I’ve said as much, and if the cloud cover in her brain is minimal that day, she’ll agree, or say maybe, but it’s not fun.

These past ten months or so have been all colors of challenging, fascinating, sad, beautiful, and draining. I’ve been aching to get some of it down on paper. Time, and concern for her privacy, have kept me from trying. A few weeks ago, though, when she was quite lucid, I told her that I want to write about it. I don’t want to be disrespectful, I said. I don’t want to intrude on your inner life or claim it. I just want to write about my experience of it, of moving through this with you. Her answer astonished me. How can it be disrespectful? she said. It’s what is happening.

Recently, she misplaced her lower dentures. Logic led me to look behind her bed, which is where I found them. She was amazed at this, and exclaimed that it must be my fairies that told me where to look. (I do often ask the angels for help when something is missing, and while I didn’t call on them that particular day, she remembered this.)

Mum: What do your fairies say today?

Me: They say ……. they say it is a honor and a privilege to help walk someone home.

And so it is. Only those that predecease their parents avoid this bittersweet reckoning, these fraught goodbyes that will render us orphans. It is gut-wrenching, but if that’s my experience I know my dear mother is living it one hundredfold stronger. I’m grateful to be there to help ease her way. When I’m wrung out and not sure how I can keep rising to the dual caregiving of daughter and mother, the fairies will be there to remind me— it is a honor and a privilege to help walk someone home.

Conversations with a Ghost

A Dead Friend Speaks

Almost a year
into my exit from flesh,
what we call,
when embodied,
death,

You talk to me,
wonder if I help
when you struggle and worry,
soothe
when you rage and grieve.

You ask
if I’ve retained shape
and color,
if my long and wild hair,
blonde with streaks of fine silver,
still tumbles down my back,
if I jog and cycle daily
in some shimmery,
cancer-free realm.

Am I still an I,
you query

or has my essence
mixed and mingled
with all the others
wafting in great waves
of something like wind
around and through
cosmic caves
and mountains
glowing in a light
your human brain
can only begin to imagine.

I will neither
confirm nor deny,
sister of my soul.

These
are not your questions,
you
do not
seek answers.

You have always known,
were the one
to reassure me
as my flesh wasted
and my fears grew.

Look for dragonflies,
I said,
and a couple dozen
appeared
in odd places
after I left.

My disembodied
face floats in corners,
signature hair swirling
as if I just dipped
my head
beneath my new surface,
peering through the murky waters
checking in on you.
Sometimes you look up,
acknowledge me,
smile.

Why, then,
do you question?

I am not an I,
but I am as me
as any of us ever are,
just as you
were alive before incarnation,
and will live on
after you discard your body.

Trust is a thick cloak
woven tight with
threads of wisdom
and surrender.

It will always
keep you warm,
as long as you remember
to put it on.

–Melinda Coppola, remembering Marina Powdermaker, who was born 8/27/61 and left her body 6/28/20. We do speak often, she and I.

For some who left

STAY

I want to dematerialize
and put myself back together
between his reedy young body
and the gun he stole
from his Uncle’s desk drawer
the night they
invited him for dinner.

I want to land hard
between her hands—
the same hands that
had just held
an acceptance letter
for the DC job of her dreams—
and the noose
she’d fashioned in secret
six months ago.

I want to hitchhike
way back to 1981 Vermont,
grab all those who knew him,
and beam us, every one,
to the edge of that Hawaii
volcano where they said
he’d jumped,
so we could form a human barricade
between his anguish
and that black hole.

I want to sing,
yell, cajole, say

It will get better.
It can,
I promise you

The world’s gonna need
you next week, next year,
you’re gonna leave a hole
that can’t be filled

and somewhere there is
someone who will
love you so much
you’ll be wrecked to think
you could ever have left
before you crossed paths

and someday
there’ll be a moment—
a car, a bike,
a wet road
distracted driver—
a child whose life
you will save

whose children
will cure cancer.

Please,
I want to say
don’t go.
Not yet.

Please,
let’s sit
and warm the ground
awhile.

–Melinda Coppola
#nationalpoetrymonth

A little more “Pub Cred”.

One of my goals as a creative person is to put more of my work out into the world. If writing and art-making gets short shrift in the bigger picture of my life as Bink’s mom and chief advocate—and it does—the amount of time I spend on submissions is barely worth a mention. All writers know, though, that rejection is the norm. Even the most accomplished and prolific artist or writer has received dozens more turndowns than acceptances. Thus, when I send one or two of my little word babies out into the big world and they are received warmly, it feels like a hug from an oft indifferent universe.

Today, I’ve had two poems published in issue six of Auroras and Blossoms Poetry Journal. I share them below, as well as a link should you want to purchase the whole issue.

Hawk, circling

She soars, sharp eyes,
purposeful behind
what looks like ease.

Below, her world
stretches magnificently
in the four directions,
all greens and grays,
mottled brown
and dull blue rivers.

Above, dark clouds,
hints of rain.

Ahead, more colors, blurring
into horizon.

Again, her eyes train
on the earth,
where she hones her vision
to capture the scurrying mouse,
the wee chipmunk.

Does she ever doubt
her wings, her talons,
her vision?

I think not,
for her glide
is at once
easy and strong,

and if she would deign
to speak to me,
she might say

You were born to this world.
Walk sure-footed on ground,
dive into the lakes
with the abandon
that comes
from knowing

if you’re here, you belong.

Mercy

What if we had drills,
not just for disasters, fires
and hurricanes, not just
for active school shooters
and any possible terrorisms
both foreign and domestic,

what if we had rigorous
training in kindnesses:
how to recognize them incoming,
start a volley with the perpetrators.

Imagine preparations
for frequent barrages
of mutual respect,
muscle building
and visual exercises
to increase aim with
arrows of understanding,
rehearsals in how to see
oneself
in another,

and, at last,
commonwealths of decency
brigades of beneficence,
great infantries of amity,

drilling to hone skills
of making, and giving,
and keeping,
peace?

https://www.chapters.indigo.ca/en-ca/books/auroras-blossoms-poetry-journal-issue/9781393899068-item.html

Thanks for reading! I appreciate it more than you know.

-Melinda Coppola

Little Altars Everywhere


My home is host
to little altars everywhere

honoring lives lived,
seasons arriving and leaving,

the hundred sparks of grace
and wonder, sorrow
and understanding

that pock and foliate
hours and years squeezed
into the dance of this body,

my particular, grand,
unbearably blessed
and gratefully transient
human experience.

On good days
I go bowing through the hours
stretched wide,
humbled by everything.

There are others, though—
minutes, whole
starless nights, mute weeks—
when these dry hands go numb
holding thin skin
tight to my bones

to keep the hope
from draining out
the holes
all the leaving
has left.

–Melinda Coppola

Notes from a Parallel Universe

I’ve written a fair amount about life with my adult child. As I plod ever so slowly towards creating a book about the journey, it occurs to me that the pace at which I’m working on that is in sync with the overall pace and rhythm of our life together. Bink will turn 28 this weekend. I’m not one to fixate on the differences between her development and that of a “typical” young adult, but the anniversary of her birth seems to stir things up for me. From that churn this poem arose.

The View from Here

You say
you just caught glimpses
of your child
as he sped past toddlerhood,
towards those labels
that mean everything
and nothing: child, tween,
teen, young adult.

Glimpses, you say,
as if it all tornadoed past you
while I stood stupefied,
hands in pockets,
by the side of some dusty cow path,
a perpetual look of dull
surprise on my unremarkable face.

Truth is,
over here our lives
are nothing like that.

We have plodded along
like turtles in the too-hot sun,
she and I,

pausing every few feet
to rest, to allow her
a few attempts at integrating
the latest sensory assault,

which could have been a wind
shaking the branches too fast,
or the distant sound
of a jake brake on a downhill semi
from a highway half a mile away.

Her needs are special,
which means our shimmy
is your slow dance,
our milestones
seem like simple addition
to your kid’s calculus.

I’m used to it,
adept at appreciating
the kinds of beauty
that decorate this life
that chose me, and her.

It’s not the pace of it all
that leaves me sweaty
and gasping for breath.

It’s my head spinning
as your children date
and learn to drive,
go to college,
get married,
have babies,
buy a house,

flying so far from your nest
you can’t squint enough
to make out the tiny dot
their bodies make
as they soar onward,
commanding the skies.

–Melinda Coppola

Medicament

Medicament

This morning’s waking,
tight and tender to the touch,
felt like neck ache,

and all along
the spine of this day
my heart climbed and slid,

ridge-riding
the grief and uncertainty
of these past months,

pushing up towards
bone-like pinnacles,
vertebraic protrusions
of more bad news—
illness and violence,
economic cancer,
people hating their neighbors—

and then
the intentional slide
over cushiony discs
hydrated with hope,

into valleys lush with
stories of great kindness,
dotted with golden gifts,
small sweet buds of peace
that can only bloom
with softened expectations.

Now at the tailbone
of a long sixteen hours,
no Downward Facing Dog
or Bridge Pose can save me
from this hunched pecking
at the keyboard,
almost desperate
to whiplash out a poem
or some semblance thereof.

How many ways
can we find
to harm each other?

and

Aren’t there an equal
number of ways
we can lift and hold,

tilt a hurting person
towards the light,
say

Look—
the way your cheek curves
towards your chin
is poetry.

And

You, over there—
talking to your cats
with your eyes alone,
see how they respond
by blinking back, slowly?

And

Old man, I’ve seen you
water your plants
with deep, unquestioned faith
that they’ll leaf and angle
towards the sun—

and isn’t that grace,

and aren’t we all,
every one of us,
a cure
for someone’s
unease?

–Melinda Coppola

Dragonflies

Image by Rona Kline

Image by Rona Kline

As I write this, my dear friend Marina lies dying in a lovely room inside the oldest house in an historic and pretty New Hampshire town. A wonderful woman who worked with her in the local general store has taken her into her home. Hospice has set her up well with a hospital bed that adjusts in many ways and keeps moving different parts of her body to prevent some of the pain associated with not being able to get out of bed.

A mere six months ago, Marina was celebrating the purchase of a little house in New Mexico, old stomping grounds for her. She envisioned growing old there while making her art and reconnecting with the culture in an area of the country she has long loved for its people and its wide, open skies. She planned to move there this month, just after celebrating her solo art show at The Newton Free Library the first week of June.

Covid 19 would likely have postponed the show, as it slowed or halted so many things. The pandemic burst into dominance at the same time that my friend had a scan that looked very suspect.

Her journey has been fraught with suffering and pain as the diagnoses and prognoses grew increasingly dark through the weeks. She has had deep sorrow, and also joy and gratitude and acceptance. I’ve written a bit about this already, and it isn’t actually what I’ve come here to the page to say.

We humans can be so apathetic about being incarnated. We act as if we have unlimited time, as if each day isn’t positively bursting with beauty and grace and opportunities to bring meaning and comfort to at least one other being.

Many of us are quite good at identifying what we don’t want and don’t like. We tend to focus on those things, and it can feel easier to blame the ensuing feelings on outside circumstances. We seem to expend enormous energy tearing each other down.

Though I am a great advocate of the practices of presence and loving kindness, I’m far from immune to the easy drop into anxiety and despair. I can make an impressive list of Everything That Sucks as fast as the next person. I can bemoan the ways in which Other People are directly contributing to the pain and suffering of the larger world and to my own little sphere as well. I can list twenty ways the shutdown has created enormous distress and anxiety for families like ours that include an individual with special needs.

The pandemic and cancer diagnoses are among the teachers that remind us how little control we actually have over many of the circumstances of our lives. Those same professorial forces can illustrate our superpowers. We all have them. Most days, I think, we can choose to do and to be in ways that can make an enormous difference to all living things—people and animals and trees and flowers. We can choose to be present with each other, to listen deeply and hold each being with respect and regard and learn great things that can alter the ways we treat each other and our earth.

Each life is precious. Life itself is an exquisite gift. Everyone has a story, everyone carries pain and joy. We are all works in progress, weaving tapestries of our memories and experiences. No two will look the same, and we have so much to teach each other.

My friend has stopped eating and drinking, and she is mostly nonresponsive now. I know that she’ll graduate into the great love that surrounds us and created us. She knows this, too. “Look for the dragonflies,” she told me a few weeks ago. A few days after that, “Look for dragonflies. Especially the unusual ones.”

Dragonflies represent transformation and adaptability and wisdom. They are associated with water, that magical, life-giving, shape shifter element that adapts to every container and circumstance. My friend has had one tattooed on her left arm for quite a long time, now. I didn’t tell her that I’ve never felt a strong pull towards them. I know that is about to change.

–Melinda Coppola
Post Script: Marina Powdermaker passed away in the first hour of Sunday, June 28, 2020. She was two months shy of her 59th birthday.

Little Big Thing

“Stay in awe of life. The little things are the big things. “ ― Richie Norton

“I’m cold.” Bink had just gotten up, a good hour later than she used to get up on any given pre-Covid Monday.

My eyes scanned her body, noting the hybrid pajamas I’d hastily grabbed for her to put on after her bath the evening before. The top, a pale pink waffle weave that had seen better days, was from a winter set. The sleeves had been cut shorter so they wouldn’t get wet when she washed her hands. She was sporting knee length summer-ish bottoms, made of a lighter weight fabric in a brighter shade of pink. They, too, were once part of a matched ensemble. Sets of things don’t stay together for long in our house. Her feet were bare.

“Hmmm,” I said. “You could put on a sweatshirt, and maybe some socks.”

Individuals with autism can have great difficulty with body awareness, which includes processing sensations and emotions. It’s only in the past few years that Bink has been able to identify a recent feeling or experience, and relay it to me within a few moments or even a few days. This happens sporadically, and I don’t take it for granted. Someday she won’t have me to instinctively understand her and help interpret her actions for a world that can’t. Though she will never live alone, and will always need help, any gains she can make in the self-care department will contribute to her comfort.

She trundled off towards her room, and a few minutes later I heard her addressing me as if I was right there with her. I sighed, feeling the familiar words rising in my throat. You need to come to where I am if you want me to hear you. I would have had to yell them down the hall, though, so I stuffed them back down into the room inside of me where I store frequently used sentences and expressions.

When I entered her bedroom, which is pink on pink and accented with more pink, she was standing in front of the closet looking in. “Mommy I don’t see the sweatshirt.” I instantly understood that she was looking for a hooded, full- zip sweatshirt. After all, that’s the kind we’d both been wearing recently on our walks outside. Let’s wear sweatshirts, I’ve been saying, as much to myself as to Bink or Superguy, as we get ready for our strolls and our hikes.

I pointed to one of her many pink crewneck sweatshirts that she’s been wearing all winter and most of this cool spring. “These are also sweatshirts,” I said, knowing she knew this, too, in some currently inaccessible part of her brain.

We moved through our morning rituals, which go something like this:

Bink texts me a question. A typical question might be Why did ______________ (insert the name of a teacher she had back in, oh, 2001) say such-and such (she’ll repeat the words that were said to her, verbatim) in a block voice on a tears boy Friday? I create my best guess answer for that day and video it back to her. If she likes my answer, my tone of voice, or the image that goes along with the video, she’ll save it and watch it over and over. The questions can be quite repetitive, and my answers may be as well. When this is addressed, she’ll say, “I’m just trying to understand it.”

Next, she texts me a short statement, something like Mommy has pinkalicious hair. She’ll await my brief, verbal response—Yes I do! Or thank you.

She scrawls in her Dream Journal after that, and asks me to read it aloud. These entries might be just a short sentence or two, or they might be a few pages long. At times, they read like recalled dreams might, with odd events like swimming in dream halls or being told she must have a bowl of beads without holes for breakfast. More often, they seem to be just thoughts, usually of the song reference type that frequent her brain in awake hours. “The man sounded like Al Simmons and John Langstaff on Johnny’s Fiddle.”

Welcome to the magical mind of my daughter.

On this particular Monday, we’d gone through our morning triad. Typically (pre-Covid) she’d begin obsessing about some detail of her upcoming day or week that she was worried about, but in these long weeks of Shutdown when all her typical activities are cancelled, she mostly fixates on The Plan. Lunch, treat, where we will walk or hike, and dinner options. Instead, she said,” I was cold in the night.”

Fabulous. Another example of her blossoming ability to identify an experience she has and convey it in a way that others can understand, in a matter of hours or days as opposed to years! I took a good long moment to savor this, then turned to her and asked, ever so gently, “Hmmm. What can we do when we feel cold?”

Bink can tell you what day of the week your birthday will fall on in 2024. She can spot triplicate numbers on the license plate of a car that speeds by so fast I barely notice the color. She can recall the exact words and tone of voice used by anyone who’s ever scolded her, and can likely remember the day, month and year it happened, too.

The integration of other concepts that seem so basic to many of us, like knowing when to don and doff another layer of clothing or a second blanket, is much more challenging for her. The first step—identifying the discomfort— seems to be happening more often for Bink. Little victories like these seem even sweeter during this period of shutdown, with more time to notice them.

Collateral Sorrow

Art by Marina Powdermaker


It’s been a time of times, a steady landslide of uncertainties. Yes, the Covid, the shutdown. Yes, Bink and so many other adults with disabilities being home all day every day for many weeks, with all the usual programs and activities canceled. Yes, the mass suffering and loss that has accompanied this pandemic around the globe. Like so many others, I’ve been all over the place emotionally and mentally.

All that has paled, though, in comparison to another great big unfolding. Marina, a dear friend of mine, has been diagnosed with a rare and very aggressive cancer. Stage four. She lives in a different state, and I haven’t been able to see her.

The news about her condition came at about the same time everything began to shut down. In a dizzying 9.5 weeks she has been through a surgery that was far more extensive than she expected, dealt with the after effects of that with multiple pain medications that haven’t worked very well, grappled with treatment plans. Each subsequent appointment with specialists has brought grimmer news, with predicted possible life expectancies going from a possible two years down to months. Yesterday a doctor told her that if she opts for no treatment at all, she may only have “days to weeks.”

She had a chemotherapy port installed in her chest, but crippling daily and nightly pain led to more diagnostics, and then confirmation that the cancer has spread into her bones. Radiation, which can’t begin until next week, may help the pain but will delay chemo. The first available chemo appointment may be almost two weeks away. She’s been told hospice is not an option if she opts for chemotherapy. Can you imagine riding on this monstrous roller coaster, exacerbated by Covid complications that keep her from close contact with those she loves? If ever there is a time someone needs hugs and loving touch, this is it. Her beloved cats, whose affection has been balm to her, had to be rehomed due to her inability to care for them.

During this turbulence, Marina, who has given me permission to tell you about her, dipped into Laurie Wagner’s free offering of her Wild Writing course. Each morning for 27 days, participants received a video of Laurie reading a poem, and were encouraged to use the lines as a prompt for free form writing. I’ve yet to take one of Laurie’s courses, but I’ve heard many good things.

Marina is a multimedia artist. She’s never considered herself to be a writer. During the Wild Writing course, she wrote on the days she could manage it, and she’s shared some of her words with me. Such raw and achingly beautiful writing! I keep telling her I want to see it all on the page, and online, for everyone to experience.

I’ve been pretty blocked (understatement) in my own writing lately. It’s true that my main daily focus has been keeping Bink occupied and well fed and reasonably content. There hasn’t been a lot of time for writing, or editing. My bitchy inner critic has also been strident in her attempts to silence me, and I’ve let her. There have been pockets for painting and drawing, but those creations seem to be content with five or ten minutes of attention in between the cycles of care giving.

There is so much I want to say, about endings and beginnings and life and death and change. If Marina can pick up a pen and allow such fierce and tender writing to come forth in the midst of her great challenges, than I can certainly let some of my own wordy impulses break free and overwhelm the block. I can do this in her honor.

For today, just one more thing. Please check out Marina’s art HERE.
She does layered, amazingly textured pieces that, like opals, look different in every light.

Take good and gentle care of yourself, and maybe go call or text or write someone you care about. Tell them a specific something you love about them. The world and all her people need more love.

–Melinda Coppola