Categorically Speaking

Dubbed

One name
for a collection of can’ts,
of never wills and less-thans,
a singular bucket
into which they dump
the myriad ways
she comes up short.

Autism.

The rusty scuttle
whose name expands
to encompass
the collected others—
Obsessive Compulsive Disorder
Severe anxiety disorder.
Chronic polyuria.
Lordosis, Kyphosis.
Intellectual Disability.

Oh, I’ve made peace
with all the labels,
pocketed them, even,
as keys to the kingdom
of Getting Services.

It’s just behind
that big familiar bucket
the real of our story is told,

told and retold
at home, in the car,
on our daily walks,
when I sing her awake,
the telling and retelling
woven into all our routines.

Her future is unknown.
Worry for her safety
looms large,
and for that alone,
this wish to stay alive
as long as she,
well past my allotted time.

Yet
sure as sunrise,
deep as canyon,
boundless as evening sky
lives certitude—
my daughter knows

her names:
Love.
Loved.
Beloved.
She Who Hears Colors in Songs.

And her other names,
also true,
which she may or may not
recognize—

Patience Coach.
Systemizer Extraordinaire.
Incognizant Teacher
of the Core Curriculum
of the Heart.

–Melinda Coppola

Accepting Autism

Ten years ago, April was designated Autism Awareness month. April 2 is World Autism Awareness day. There has been a movement towards renaming both of these, replacing awareness with acceptance .

Robert Frost wrote,” Always fall in love with what you’re asked to accept. Take what is given, and make it over your way. My aim in life has always been to hold my own with whatever’s going. Not against: with.”

I don’t know many people who fight against the reality of autism. On the contrary, I know dozens of folks who have grasped their circumstances with both hands and shaped them into something meaningful, useful and beautiful. Affected individuals have found ways to educate non-autistic folk and improve the lives of others on the spectrum. Parents of children with the diagnosis have created organizations to assist with creative housing solutions, adapt recreational activities, and push legislation to protect our vulnerable loved ones from abuse and neglect.

I wrote the below poem four years ago. Today seems an appropriate time to share it once again.

Autism Awareness month is April,
World Autism Awareness Day, April 2
and, in case the day lacks color,
(as if any day with Autism in it could be dull),
the mysterious Namers-of-Days-and-months
have painted it a medium sort of blue.
I wonder who decided this;
and how it was chosen,
this perfectly ordinary second day,
and weighted with a long middle
moniker, like a fish
plucked out of the ocean,
tagged and thrown back
into what used to be
a perfectly ordinary fourth month.
And why a color? Why this one?
Does Autism look like blue
to outsiders?
Pondering this, I roll up my sleeves,
prep the tub for her,
the one who turned my life on its ear,
she who makes me laugh,
she who wears me out,
she who is a master of repetition,
she who defies reduction,
who is multi-colored, many-hued.
She who is unaware of your awareness,
who, if asked, would mutter “ Not interesting”,
she who needs help with a bath
but can take a thing
and spell it backwards,
report to the air/no one in particular
how many redundant vowels it contains,
and how her lunch reminds her
of Home on the Range.
She who hears songs in color,
who does not stay in her bed all night,
who is frightened of beads with holes,
she who knows if there’s a day to be aware of
it’s the fourth Friday in February,
which is called Ate Baby Kate, and that means bad,
and therefore must be worried about
many months in advance,
she who can sing whole CDs in order,
she who tells me thirty times a day
that I’m a girl ( in case I forget)
She who needs more than I have
who gives more than I need
who has more than you think,
who is more, so much more,
than you give her credit for.
And so, dear you-who-aren’t-aware,
please allow me to set the record straight.
Autism is multi-colored,
and awareness is every single day,
and no blue second day of any fourth month
will ever matter more
than your interest, your kindness, your respect,
your willingness to help us challenge
a world that would reduce anyone
to an assumption
or a label
in one color
on one day
within one month.

–Melinda Coppola

Literally

I suppose all parents have those first moments of recognition; the sudden realization that the world has pushed itself inside your child’s innocence, the bittersweet rush of comprehension that s/he will never be quite the same again.

Having a child with disabilities creates a different trajectory. Timelines are unpredictable. Those milestones that mark the development of most children may never appear. They may show up in different forms, or make an appearance years later than what is considered typical.

In my 28 years of parenting a child who carries several heavy labels, autism chief among them, I’ve had the pleasure of knowing many individuals who also shoulder that diagnosis, and they are just that–individuals. Though there are common clues that might alert the uninitiated, there is no absolute list of characteristics that defines them all. One of the more common hallmarks, though, is what the world calls literal thinking.

There are so many ways that language can be bent to suit our needs for expression. Idioms, metaphors, hyperboles and analogies come easily to those of us who have natural fluencies, but these rather abstract concepts can be baffling for many folks on the autism spectrum.

Bink has a volunteer job at a wonderful store in a town nearby that sells books and toys. This was a giant leap for her. Though she adores colorful toys and fun activities geared towards a much younger crowd, the things that go along with having a job—taking and following direction, limiting breaks, staying with the task at hand, and persevering through non-preferred duties——are real hurdles for her. She has done well, though, gradually building up to a few hours there. Her one-on-one staff, S, is a patient, gentle woman who brings her own parenting experience along with her. Bink loves her and I frequently thank the stars above for the gift of her on our doorstep each Tuesday. The owner and staff at the store are also incredible. They consistently come up with a list of things for Bink to do, ensuring the variety she so craves.

One Tuesday at the store, Bink spotted a collection of small plastic packages with images of horses on the front. She used to have weekly horseback riding lessons, but that was snuffed out when Covid arrived, and we’ve no idea when this marvelous activity will return. She took note of the horses, and a few days later she mentioned the toy in her very typical way.

Bink: I wanted that thing.

Me: What thing?

B: The thing at the toy store.

Me: What was it?

B: The magical thing.

Me: You have money you have earned from your chores. Do you know if you have enough to buy the magical thing?

Bink: I don’t know.

Me: Well, when you go there next week, maybe S can help you figure out if you have enough money saved to buy it. We can put some of your money in your purse so you can pay for it.

Bink: I am not supposed to play with the toys.

Me: Well, you can look for it when you are finished with your work for the day, and buy it if you have enough money.

Bink: I am at work.

Me: OK, well maybe we can make a separate trip and look for the toy.

Bink: OK.

A few days passed. We had the welcome opportunity to have a caregiver come for a few hours on the weekend. Bink loves to go out places. Walks, stores, anywhere. Since Covid, the options are limited. The toy store does have a careful health protocol, and she is comfortable there, so we agreed that would be a good destination. I made sure she had some money in her purse, and off they went.

A few hours later, she returned with a small plastic package containing that magical thing. It was a little horse figurine made of plastic. I helped her open it, and she trundled into the next room with it. A short time later, I saw the empty wrapping in the trash. She’d put the little horse in my home office, which is where she deposits things that she wants to get rid of.

Me: You don’t like the horse?

B: It doesn’t work.

Me: Well, it’s just a little statue. It’s not meant to move or anything.

B: It doesn’t work.

Curious, I pulled the wrapping out of the trash. The words on the plastic wrapper were quite clear. “Blankety-blank brand horses come to life!” Aha! A major clue.

Me: Honey, did you think the horse would move?

B: I wanted to see it come alive.

The words that came to mind immediately? Deceptive advertising! Those words slipped out against my better judgement, so I tried to explain the concept, but my sentences twirled off into little question marks in the air around my daughter’s ears. So I did what I often do. I grabbed one of my handy responses, the kind that often feel like a feeble excuse for the shortcomings of the mainstream majority:

Things don’t always make sense. People are confusing.

Sometimes it feels like hefty chunks of days are spent struggling to explain to my clear-eyed girl that the world is full of people who don’t say what they mean and often don’t mean what they say. That sometimes it is considered OK to say and write things that aren’t true, especially if it makes people feel better or makes them want to buy something. That many things we’ve come to accept as perfectly fine, aren’t fine at all. When I view events and people from Bink’s perspective, which I often do, the myriad contradictions and unnecessary noise seem quite nonsensical. My head starts to feel like a spinning top, and I want to crawl deep inside myself where it is much quieter, and stay there a long while. Literally.

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

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

Me and My Shadow Go to Market

It is May 2020,
still early in
The Covid Times.

We take ourselves to the market,
by which I mean
our whole selves,
me in my layers of
self-consciousness—
the run of the mill kind
that most of us don
without thought—

she baring all, as usual:
no pretense, nothing to hide.

The market rule
in the time of virus:
No touching anything, honey,
except yourself or Mom.

We’ve gotten good at this one,
practicing since mid-March,
and so we go,
in service to our shopping list,
following the one way arrows
like breadcrumbs,

and her singing beams
a Disney-flavored sunshine
up and down the aisles
even through her mask.

She pauses in front of the dairy section,
(which means I pause, too)
halts her sunbeaming mid-song,
and announces to the floor,
” Mommy it looks like I have to pee.”

No beats to skip,
for we are well prepared,
the purple handled pee jug
bagged and ready
in the backpack,

nestling up against
the toilet paper,
flanked by two packs
of antiseptic wipes,

and into the bathroom we go,
my shoulder managing doors,
finding a stall, hooking
pack to hang,

pulling out
that magnificent portable
receiver of pee
that makes all outings
seem possible,
conquerable.

We navigate this
like so many other things,
my thought out plan
for safety and practicality

backlit by the simplicity
of her needs,
which aren’t so much special
as they are honest,

the whole thing shined up
by my gratitude, in recent years,
that she can name the feelings,
usually in time to stay dry.

We are each engaged
in familiar activities:
she is peeing
and I am musing,

wondering
and marveling
at what the world could be
if we were all more like her:

free of innuendo,
honest to a fault,
unable to fathom
marching to any beat
but our own.

–Melinda Coppola

Gifts and Visitations

It’s been just over a month since my dear friend and soul sister Marina died, after a quick and nasty tussle with appendiceal cancer. She visits my consciousness daily, in ways both fleeting and substantial. We talked a lot about the afterlife in her last months. She told me clearly that, when she visits me after her death, she’d make herself known in a way that looks like dragonflies.

The first sighting occurred less than twelve hours after she passed. I was with Bink, walking at one of our favorite Audubon sites. There, a trail unrolls through a little forest before splitting itself in two. To the right, a lovely treed path eventually leads to a small bridged dam, pausing before heading into more woods and on beside a waterfall.

Choice two runs straight ahead at the fork to a wee bridge that cinches a pond on either side. This beckons onto a boardwalk over more water, with an option to follow a path into an almost wildly overgrown bit of land.

It’s a magical place, one that my little family appreciates tremendously. That final Sunday in June was the first time Bink and I had been back since Covid-19 had closed most Audubon trails in mid March. We were delighted to learn of the re-opening, in time to greet the summer growth gracing the land. Across the water, a thick blanket of lily pads hosted frogs napping in the sun. Turtles rested atop rocks protruding from the pond. The air buzzed with insect life.

It was on the boardwalk that the first dragonfly came into my vision. She hung in the air in front of me, sunlight shimmering off her blue-green body. I tried to capture a picture of her, but each time I positioned my iphone she flitted out of the screen.

Soon, I noticed more dragonflies. Different colors and sizes, all dancing and hovering around me and Bink and above the water. Well, I told myself, this is dragonfly heaven! Of course they are here. Doesn’t mean that it’s Marina.

At home a few days later, Superguy pointed wordlessly out the window over our kitchen sink. We have planter boxes and a large pot or two on the deck out there. A lone dragonfly hovered in the thick air between a raised box and the plants thriving in the pot next to it. Thirty seconds, one minute. Maybe two. There she is, I thought. She’s here, he may have said.

Earlier this month, we stayed at a small rental on the Cape for a week. It was a hasty decision we made back in February, pre-Covid. The house we’d rented and loved for years had sold recently, and we were mourning the loss of that sweet yearly week. We’d driven down to the area to look for another option, hoping for something, anything, that would be within a short walk to the beach we love.

We found a cottage and were able to view the inside. It was much smaller than the previous one, paneled in pine that was darkened by age. It was also available for a week this summer! We put a deposit down on the spot.

Marina, whom I’d seen the month before, had not yet been diagnosed with the cancer that would take her life. She’d been tired when I saw her, and only vaguely aware of some indigestion.

When my little family arrived for our July week at the cottage, we went around to the back door to retrieve the hidden key the owner had told us about. There was a metal sculpture on the backside of the house. Hmmm, I thought. Dragonfly? No, it looked more like a butterfly.

We went inside. The small kitchen opened out into an equally compact dining area and living room. There, on a shelf looking out towards the front window, was a colorful square canvas with—you guessed it—a beautiful dragonfly on it. Tears welled up in my eyes.

In the bedroom off the kitchen, the same dark wood covered the walls. Superguy was the one who spotted it first: the sole decoration in that room was a colorful cohort of dragonflies, rendered in metal and nailed to the wall.

A few days after we arrived, my love said,” Hey, did you notice the dragonfly art by the back door?” “Oh, yes,” said I. But I think it’s actually a butterfly. Noooo, he mouthed soundlessly, his silver hair catching the scant light from the back door as he shook his head. We went out to examine it more closely. “See this elongated body? That’s not a butterfly. It’s a dragonfly.” And so it was.

Bink loves to swim. Recently, as she swam in a local lake, her head bowed as she dipped her curious, goggled eyes beneath the surface, M landed lightly on her back. She stayed there for several minutes, not moving.

Another day, a dragonfly appeared on the inside wall of our garage. She just sat there, watching and being watched, for a long time.

I’ve made online connections with others who knew and loved Marina. There have been strings of messages between us, and a tender Zoom memorial service this past weekend. We’re scattered around the globe, yet many of us have had dragonfly sightings in recent weeks.

Sometimes, I hear Marina talking to me. It’s reassurance that all is well, that she is indeed in bliss. There’s more, though.

Marina was an artist. Like many creatives, it took her a long time to truly and firmly believe in her art. It was only in the last two years she was financially able to cut her “real world” work to a minimum and give her deep attention to the gestation and birth of her evolving artwork.

She first knew me as a young poet. At twenty, I was untamed and bohemian. Poetry poured through my fingers when I sat with a journal. Through the years, my visiting time with Marina was often spent making art, with hours of talking and laughing punctuated by periods of absolute, easy silence.

One of the gifts my friend tried to give me over the last few years was what she called the YES, AND. Marina understood the constraints of my life circumstances over the past few decades. Through my descriptions, and the perpetual need to do careful advance planning for our scant visits or even our phone calls, she had a good sense of what is involved with parenting a child who has significant special needs.

She knew that I love my daughter without limits and beyond comprehension, that my commitment to her wellness and growth is lifelong and unwavering.

She also knew how I longed, long to have great expanses of unfettered time to write and paint and make art with beach stones and fully explore the wellspring of creativity that has always been part of my bone structure.

“Don’t starve your soul,” she’d say. “YES, you are an amazing mother. YES, your daughter needs you. AND—make time for the art. You have books inside you and your painting is full of Goddess energy and whimsy and you need to let it out. Don’t let it die.”

Sometimes, I accepted the gift of her words graciously, gave them a nod, then dove right back into the thick stew of my life. A few times, I let her words really penetrate. Paintings would come to life in snatches of time. Poems would press themselves out in pieces on my Mac, waiting patiently to be shepherded into something complete and satisfying.

When Marina extends her energy into my moments now, she knows I feel her offering gifts again. If she were in the flesh, she’d say YES. It’s a full plate. Covid has magnified it all. Bink will always need. AND you need to tend your whole garden, sweetie. The whole damned thing.”

–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