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

Prospecting for Grace

Praise

The faithful sun,
generously stirring
energies of Earth
and atmosphere,
coaxing every green thing
towards the rising
song of spring.

Parents
walking with their children
outside, smiling
and laughing, nodding
at neighbors
out washing their cars.

Quieted streets
yielding their usual
ruthless noise
to melodious birdsong,
squirrels rustling in the brush,
the wind whistling
in the still bare branches.

Moon, conducting
the rise and fall
of seas everywhere,
the call and response,
organic and lyrical,
in all bodies of water,
even ours.

Every incremental sign
that goodness and hope
are alive and well,
seeding us with patience
through this reckoning time—

There I’ll set my gaze,
invite my pen to praise
all that.
Praise all that.

–Melinda Coppola

Communicable


PROPAGATION

I’ve taken to humming
in the produce section
while caressing the plums,
sneaking sniffs
of the cilantro,
eyeing the lemons,
audacious in their yellowry.

It’s a low, soothing thing,
the thrum of air
over vocal chords,
nearly a buzz,

and I am almost
a bumblebee,
hovering over color,
circling the end caps

as I admire
the mottled plantains,
the papery shallots
with their secret,
chambered cloves.

Outside the store
there are doomsayers
on every sharp corner,
the shattered remains
of a national normalcy
cutting feet,
drawing blood,
speculation,
and despair.

Even the sunlight
serves only to magnify
the sparkle of
all that broken glass.

The lines in the parking lot
seem repainted every night,
with more space
between the spaces,
to keep the usses
from door-dinging
the thems,

but inside
the flamboyant vegetables
nestle up to their neighbors,
fragrant fruits
and bags of nuts
coexisting,

and there I’ll go
humming and hovering,
covertly cross pollinating,
to propagate
a kinder world.

–Melinda Coppola

BEGIN AGAIN


BEGIN AGAIN

“Our life is an apprenticeship to the truth that around every circle another can be drawn; that there is no end in nature, but every end is a beginning, and under every deep a lower deep opens.” – Ralph Waldo Emerson

Begin again is the dry brush dipped into water. The soft tip touching dark blue, then medium green. The hand holds it steady over the welcoming canvas for a moment, then escorts it down to the wide, white surface.

She knows this first brush is delighted to be employed in this way. She is certain that each tool and supply she will be guided towards will co-create the picture that wants to bless the canvas with form and color.
—————————————————————

Begin again is the woman opening her purple 2020 calendar book with excitement. She is looking at the weekdays, the squares and numbers and day names that make up those blocks of time. She does the math, deducts the hours she will spend giving care, the appointments and commitments she has already made. She subtracts an approximation of the many miles of driving she will do, transferring loved bodies from place to place. What is left? What is possible? She begins to block out the writing time. Four minimum hours a week, six even better.

Whispers of worry float into her mind and cloud her vision. The scribbles already residing in the blocks on her calendar pages seem to expand as she gazes down at them. Will she be able to keep sacred those chunks of time she will set aside? Will she stay focused, or will she allow everyone else’s needs to usurp that free-ish time?

Those are the old patterns, she tells herself. In 2020, she must allow the writing to become one of the priorities. Set the minimum hours and let the pen form the word WORK in the possible spaces her calendar provides. Honor the time for writing as she would her other must-dos. The books inside her need to gestate and be born.
—————————————————————
Begin again is pink and lavender, with streaks of pleasing gray. Begin again is sweet and just a little spicy. It feels good in the mouth. Begin again wants to marry All is Well and settle happily inside her chest.

–Melinda Coppola

FISHING

Perched on the frost hardened bank
of the wide, cold river,
eyes intent on the rushing water,
dark and high,

I notice the greenish
brown river grasses,
rooted hopefully in their muddy beds,
in a permanent lean
as the current pulls them forward,

and my eyes train between the reeds,
strain towards that bottom
where I might glimpse gray,
or mottled brown,
perhaps a shape
unlike rock or branch,
something undeniably fish.

It’s late,
and wearily, determined,
I step into the freshet,
tossing pail and net aside,
boots sinking into the thick
organic carpet
lining the raging stream.

Now bent-kneed, hunched,
all my senses joining
with the forceful rush of water,
I feel things pressing, jostling,
knocking on my rubber clad calves,

and I’m shivering, such a
cold day for fall, wondering
if I’m delirious or
if perhaps the catfish,
the crappies,
the brown river trout
have finally
come to call,
and

are they taunting,
or urging me to name them,
call them forth,
lift them from the frenetic fray
into the bright relief
of their afterlife?

I plunge my hands
into the frigid waters,
grabbing at any shape
I think I see,
pulling out stones loosened
by the swollen rush,
and hunks of half-composed leaves
still attached to their rotting branch,
and,

gloves now soaked,
I am tossing handfuls
of dubious treasure
up onto the hard earth

when,
hands numbing
from the icy wet,
my eyes go to an odd form
amid the shiny tangle
of cast off debris
trembling on the bank.

It’s a little crayfish
on his back, caught in the clog
of dirt and stone,
tail flipping uselessly
towards the white underbelly,
claws open,
the bright sun
turning tiny, stunned eyes
to shiny marbles
and

my purpose becomes tenderness,
compassionate curiosity
as I reach my wet gloved hands
under his small dark back,
scoop him from the tangle,
and right him
to meet the earth.

He pauses, stance wide,
lifts his impressive little claws
up and out
as if to say
come no closer,

and then he’s off, eyes
still fast on my foreign face,
tail flipping to scoot him
backwards into the river.

Peeling off those soggy gloves,
warming my freed and icy hands
with steamy exhalations,
I sense the little crustacean
returned to his wild waters,
watching from the depths,

and I want to
imagine him grateful
for the wake up call,
full of new appreciation
for his river, his claws,
his small, powerful tail.

I suppose I’m projecting,
because that’s what we
humans do,
dripping our fears and
hypotheses all over
the plants and animals
around us,

pulling poems from their hunt,
their flower,
stories from their mating rituals,
always seeking ourselves
in their purposeful, focused lives.

I am sated, spent, complete,
gathering my empty pail,
my soaking gloves,
heading for home.

–Melinda Coppola

Brown Girl Hair Has Left the Building

Bink loves girl hair. For the uninitiated, this translates to long straight hair hanging down, on a female of any age. Preferably, the hair should be visible equally on the right and left sides of her head.

I’ve had long brown hair for 25 of my daughter’s 27 years. At one point, it grazed the small of my back. Bink loves reaching for a lock of my hair, especially when she gets up in the morning, when we part and reconnect during the day, when she is feeling anxious, and before she goes to sleep. Brown Girl Hair has even become my sometime moniker. Superguy has been known to refer to me as BGH (for short) in his texted or emailed communications with Bink, or when he addresses me in a birthday card.

In addition to being Brown Girl Hair, I’ve also been identified as Gooey Oyster. That means soft, smooth, silky hair in Bink’s world. Through no fault of mine, she loves raw oysters. And, to her sensibilities they are smooth and silky soft, like my hair. So she’s used the Gooey Oyster identifier along with Brown Girl Hair for some time.

Bink would prefer my hair down all the time, but my life is rather active. When I am cooking, cleaning, exercising, teaching (or doing) Yoga, caring for the cats and many of my other miscellaneous occupations, it is much easier and more practical to tuck it all up into a quick bun. This has led Bink to write, “You are not bread.” on napkins and leave them around the house for me to see, or to record into her tape player, ”Mom should not have a bun because she is not bread.”

We have been known to negotiate. “Hair down?” she’ll ask. “I’m cooking,” I’ll respond, perhaps for the fifth time. “Hair down at 4:40?” she’ll say, with an edge of faint hysteria in her voice. “I’ll put my hair down at 5 o’clock.” And so on.

I’ve loved hosting long hair at many points in my life, and other times I’ve tolerated it. Snarls happen easily, and the high-quality conditioner and combing in the shower precedes the two hour drying process. No hair dryer, except for the bangs. I’ve no time or patience for the tedium of all that hand-held noise, and it’s not good for the hair, either. There’s also the impracticality of having my long—albeit soft and shiny, gooey oysteresque—locks hang down and hinder my free vision or motion. Worse yet, it can inadvertently get dipped into a pool of mystery goo on a counter, or catch some errant cat food as I bend to clean up after our messy felines. Sometimes, I’ve found myself feeling tired of the process required to maintain all that girl hair.

I’ve broached the topic of Cutting It many times with Bink, who has reacted with a variety of expressions of displeasure, anxiety, and horror. When asked what she loves about her Mom, Bink will inevitably say, ”Her brown girl hair/gooey oyster.” I’ve often joked that, if I cut my hair short, my daughter would be in the market for a new mom.

She grows older, though, as do I. Signs of flexibility and maturity have been showing themselves in the past few years, particularly as Superguy and I push the envelope more. We are, after all, in the service of helping her become more independent, given that there will come a day when she will have to live without us. (Deep, heavy sigh inserted here. Topic of another blog post, or another fifty of them.)

I’ll be fifty-nine in a few months. I’m keen on decluttering my calendar and my environment. I have never been more aware of the need to make room for the things that really matter, like good health, and quality time with beings I love, and for the book that needs to gestate inside me. A new yen to Cut It Off began to make itself known in the past month or so.

Cue new consult with Superguy and Bink. “No,” she said. “Not above the shoulders,” said he. I reminded them gently that, despite evidence to the contrary, my hair belongs to me. And I was ready to cut it.

“It won’t be super short,” I assure them. “But I am getting it cut. I will let you know when it is going to happen, and everything will be OK.” And, you know what? It was.

A few days later, just before Christmas, I walked into a hair salon I’d never been to and plopped down my 25% off coupon. I told the lovely lady wielding the scary looking scissors that I was ready for a change. “But, not too short. And, I’m not a high maintenance type. I’m not going to put products into my hair and spend time in front of the mirror blow drying my mane into submission. And, I still need to be able to put it back, or up.” And then I let go. Kind of.

That afternoon, I picked up Bink from her day program wearing my new ‘do. She’d been warned, and after her name was called she peeked anxiously around the corner to assess the damage. Then she trundled towards me and put her hand up to touch my shiny, freshly-blown-out hair that would probably not look that stylish again until or unless I visited a salon.

“It’s still Gooey Oyster,” she said, and my heart got all melt-y and began to drip big blobs of love and appreciation all over the Pergo floor. My girl was doing her best to find a positive in this situation that she’d been dreading for years. Though Superguy and a few select others would have some sense of what a big deal this was and is, only I knew the true magnitude of that moment in the lobby of her day program. It could so easily have gone a different way; and it didn’t, because she is amazing and wonderful and she is growing and changing and she defies expectations more often than I probably give her credit for.

Bink is used to it now. She informs me at least daily, ”You’re not girl hair but you’re still gooey oyster!” Only twice has she wondered aloud if I’ll ever have girl hair again.

I do feel inclined to tell you, reader, that my hair is not actually short in anyone’s estimation except Bink’s. I had about six inches cut off, which leaves me with layers that end below shoulder level. It’s easier to manage this length, for sure, but I also feel benefits beyond shorter drying time and fewer tangles.

Bink’s willingness to bend and her ability to adjust to this big modification of one of her major comfort items leaves me feeling hopeful and proud, and lighter in more ways than one.

–Melinda Coppola