Kind or Write?


I’ve been finding it challenging to encapsulate life with my daughter, Bink, lately. Hard to shape words for the page and even for casual conversation with friends, many of whom have their own experiences with parenting and/or caring for people they love who have special needs.

It’s not for lack of material. Bink continues to surprise me at times, wear me out at others. She delights while calling forth all my mental, emotional, sometimes physical resources, in almost equal measure. She’s growing incrementally towards greater confidence. She’s opening up, revisiting some foods she’d dropped from her odd gastronomic repertoire, talking of trying some activities like skiing; these are things that are, in my world, a very big deal.

There is so much I want to share, and yet I’ve been noticing more guard rails hugging the road I walk and ride while parenting her. Sometimes my own hands show the callouses that tell me I’m on the work crew, building those stout metal fences with what might be a thought of safekeeping. But what is there to keep safe? I’m aware of maintaining some privacy for her and for our family. That’s the why for the blog names I’ve given daughter and husband, and the way I don’t show many pictures of her.

Maybe that’s part of the tension. As she grows, so do her talents. I’m biased, but she has a range of them that almost beg to be shared. She sings beautifully, and has a huge memory vault of songs going back to even the little tunes I made up for her five or six months after she was born. I want to record her and share some of that melodious magic with you. She is developing into quite an artist, and as our walls that display some of her work
beg for mercy, the canvases stack up along the baseboards. She wants it all framed and hung, you see.

She has been horseback riding for over a year, an activity that Superguy and I shared some pessimism about when she began. Knowing her as we do, we figured the combination of a good bit verbal instruction (which can overwhelm her), the smell of the barn and paddocks, and the physical challenges of maintaining good posture and engaging core and leg muscles for thirty minutes would culminate in a short-lived equestrienne experience. Between us we probably gave it four weeks. I’m thrilled she has proven us wrong!

I’ve talked with Bink about recording some of her singing and sharing it, and she said that would be OK. I know she’d be fine with gaining a few more admirers for her paintings, too. And there is just so much life, so much that is funny and sad and fascinating in our day-to-day. It all wants to be written, whether read by fifty or by three. And yet.

I’m fortunate to have a few handfuls of writer friends, gained mostly from some fabulous online groups and communities. Our blocks are a common theme. There seem to be endless reasons to stop writing, or at least to stop posting what one writes. Sylvia Plath wrote that self-doubt is the worst enemy to creativity, and I’d have to concur that one ranks pretty high on the list. Not surprising, right? We all have an inner critic, and s/he can be very compelling, and nasty.

And then there’s the prickly issue of other people. I think most writers are introverts, and some of us are, umm, kind of sensitive. Working on thickening our skin, perhaps, but tender in places. A casual, well meant, and possibly quite constructive comment, or an innocent question, from a family member or close friend that reads our work, can send some of us into the claws of inner critic, the alpha bitch. “ See? Your writing sucks,” she’ll hiss. The effect? Shutdown.

There are, also, the other other people. The ones who have had a big impact in not-so-positive ways. For Bink,
some of these people and her interactions with them can take up a great deal of her headspace. Her mind seems to be full of what I can only describe as files. They go back to her infancy (and even before, but that’s a subject for another day).

Once a file from a certain part of her life is open, the things that happened during that time period get played out over and over. I mean this rather literally. Unfortunately, a lot of her recall involves unpleasant scenes and comments. She loves her old-fashioned tape recorder, and she can regurgitate the exact comments people made, in a good imitation of tone, volume and inflection the way she experienced them. She can even recall the date and day of the week these things were said, or done. She scrawls in her journal about these things, too, and creates lists of questions for me to answer the way I think the particular person would answer them.

Bink doesn’t record the sounds and events of her past for the benefit of an audience. Save the aforementioned lists of questions for me to answer, she doesn’t seek a reaction from me or Superguy. In fact, she seems a bit taken aback when we suggest that it may not be the best thing for her to perseverate endlessly on the things people did or said that upset her. She might respond with, “ I’m just trying to understand it.” Or, “ I like to hear the voices.” or even “ It’s important to me.”

As you might imagine, it can be jarring and also enlightening to hear the things a few certain people said to Bink, sometimes decades ago. She doesn’t know how to lie, so there is no doubt these things were actually said. Some of them are appalling. I can only hope they were not actually yelled, and that the loud volume she recalls and imitates is a result of her sensitive nervous system and wiring.

Bink opens new files every five or six months, and re-opens old, familiar ones more often. There is always more to learn from her well-organized memories. Mostly, the people who star in these spoken or written negative memories are not actively in her life anymore. That’s probably a good thing for them because I’d have questions and some sharp words for them.

What does this have to do with my difficulty writing about Bink of late? Well, it’s a delicate thing, to either include or extricate the parts about her obsessions with unpleasant ghosts. I think it’s very unlikely that any of them read my work, but one never knows.

I’m a big fan of Metta, the practice of loving kindness meditation. It has saved me, at times, from becoming entangled in sticky globs of anger or fear or bitterness towards a person or people or happenings that seem to have hurt or wronged me, or Bink. There is a process to the practice, a form and shape that starts and ends in the heart center. It begins by directing deeply loving attention first to the Self. Next, there is a gradually expanding circle of invitees, beginning with the loved ones, then the liked ones, then the neutral people, and finally the people (or circumstances) who challenge us the most. Yup, the practice is to open the doors to the most tender and loving place inside. Once the guests arrive, we make them comfortable, and then proceed with blessing them with happiness and peace. It’s not an easy practice, but it can shift the entire energetic relationship we have with life.

Therein lies my answer, I suppose. I can write about Bink’s thorny memories, or my own. I can poem about anything, include anyone. I just need to be willing to accept reactions, and remember to bless each person and circumstance, present or past, who have crossed paths with Bink, or with me. Thank them for the lessons and wish them an honest well-being. And, just maybe, Bink’s opened files, her very vocal recitations and hastily penned recounting of less than pleasant things, can serve as reminder that love can indeed be greater than fear, and the choice to forgive is the very best gift we could give ourselves and each other.

If you’ve read all the way to the end of this run-on piece, terrific! And if you haven’t, that’s fine, too. I’ve just written about not being able to write about Bink. Surely, that counts as writing about her, which means it’s time for tea.

“I write to discover what I know.”
–Flannery O’Connor

PS: Bless you. I forgive you. Be well.

Pentimento

pentimento
noun
pen·ti·men·to | \ ˌpen-tə-ˈmen-(ˌ)tō
Definition of pentimento
A reappearance in a painting of an original drawn or painted element which was eventually painted over by the artist

The canvas: my face in the mirror, fifty eight years familiar with this world.

Five or six, roaming like the free-range child I was, I caught the sharp end of a rock that soared from an older brother’s slingshot. He didn’t mean it, don’t think he aimed at me, but the impact was hard, and the flesh below my left eye tore, and years later my mother said,” We probably should have gotten you stitches there.”

It’s faint now, a sleeping crescent moon at the top of my cheek. Grace that it didn’t hit my eye, methinks. Pure grace.

Pentimento.

Seven years old, my neighborhood friend
Chrissy rammed a big branch end into the tender space between my nose and my lips, that little grooved path that caps my cupid’s bow.

I’ve since learned its name is philtrum, and no hard feelings, but the game we were playing tattooed a constellation of broken blood vessels across my upper lip, and dotting towards the tip of my nose.

Pentimento.

At twenty nine I had some of that lasered away. Safe for the pale philtrum, not so for the tender lip herself, and so I carry the permanent memory of that day as some big red blotches across my lip. Lipstick never covers it completely.

Pentimento.

Teenaged and beyond, the blackheads landed on my nose and built whole neighborhoods there, and some pimple friends moved in to join them. An anxious one I was, and I discovered the simultaneous relief and delight of squeezing all those things.

So many years later, I can find a few little craters, and small dark lines that seem to drag one pore into another. Not enough so you’d notice, but my nose reminds me I lived through those times. And survived.

Pentimento.

At forty five the crinkling started. The skin at the outer corners of my eyes led the way.

Vertical lines across my forehead came a little later. Layering and playing with texture and color, nature gently added grooves. There are smile lines, and the little cupped channels below my eyes that trace the outlines of darker circles there.

Pentimento.

Sometime between then and fifty, one side of my mouth shifted downwards. It has the oddest effect, like half of each lip is larger, and the drooping side disappears into itself. Sometimes, I paint on lipliner to even it all out.

Pentimento.

Around fifty I began to notice that the skin was slowing way down. Once pressed and imprinted with pillow or a hand propping chin or cheek, she wasn’t so quick to plump back into her former texture and shape. Sometimes I carry the pillow lines until lunch, and I’m an early riser.

Pentimento.

The eyebrows have thinned. Some come in white, and there is a vacant patch in the thickest part of the right one. Sometimes, I pencil in some dark to seed that bare spot. Often, I don’t. The white hairs? I usually thank them for visiting before plucking them away.

Pentimento.

There are some random dark splotches over the cheeks, above the lip.. They call them age spots, I call them places of interest. I don’t cover these, though I wonder, sometimes, how many more will arrive, and if I’ll care.

Pentimento.

Face as canvas, and the mirror shows me the privilege of a longer life than many are given. On close inspection I find layer upon layer of sad and happy, hurt and scared, content and growing wiser. I find hope and despair, and lots of letting go, and a glaze of peace on top of it all.

Tender

Raccoon, bread, apple by Bink


Tender.

Unless I am speaking of meat,
which I mostly don’t,
the very word owns its ness,
as in,
what is tender
evokes tenderness,
and what calls that forth in me
is that which I am drawn towards,
or s/he whom I draw close,
or want to.

Draw close,touch,
be connected with, and to—
it’s like a song whose notes
sidle up beside each other
and seem happily married,
or a poem that dances
smoothly,
word to word,
meant to be silken,
not rough and chopped
like this one.

Tender.
Tenderness.

Decades ago, as a young mother, I joined a playgroup with the odd name of Warmlines. I was lonely in my complete consummation with motherhood, and with my baby. The group name continued to strike me as odd, until recently.

I am thinking of the people in my awareness that are hurting, that are celebrating, that are lonely, and tired, and scared. There are mothers whose adult children have complex special needs ( like my Bink) , and they are trying to hold their ground in choppy waters, and I so get this and I feel connected to their pain. There is the friend from a writing group who has recently been diagnosed with incurable brain cancer. I’ve never met her in person, but she is a sister of the pen. I can only hold her image in my heart, and pour small offerings of caring into her hands, her mouth, as I trek through my days. There is a friend whose brother has mental illness, and his dangerous behavior pulls something from my depths which reaches out to her. There is my dear Aunt, recently diagnosed with early onset Alzheimer’s, and my beautiful friend M who mourns the loss of her mother.

On the celebratory front, my niece is blossoming in her first independent teaching job, living in her own apartment. One of my Yogabilities™ students is in a new day program, an art program for adults with disabilities that encourages her immense talent and will also market her work. My own Bink is creating rather wonderful art in an afternoon class nearby. She also began horseback riding a year ago, and she has exceeded my expectations with her interest and ability.

There are so many more, people I know online, in person, people I know of through friends or family, all dealing with the sticky stuff of life. When I think about them, I visualize myself floating in a kind of emotional outer space, connected to each of these people, who are also floating. There are slender but strong ropes growing out from my body to theirs, or perhaps they originate from each of the others and find their way to a temporary home in my heart. The ropes are purple, and there is an energy pulsing through them; the energy of connection and compassion. That’s when it hit me. Warmlines. Tentacles of caring, linking us to one another as we journey through life. So tender, so very tender.

–Melinda Coppola

Hmmm. I thought I put me down right there

Here is Where

All day the wind blew
the trees against the house,
and my old ears
heard the hearty breeze
as a roaring river,

the kind that swells
in spring,
the kind that swallows
half made nests
the wind shakes
from the breast
of tight bushes
and tosses
carelessly
towards the sky.

Inside I wander,
room to room,
searching for some trace
of the self
I just this morning
left in that corner,
or under those stairs,
or,
I could have sworn,
on the hanger
next to the scratchy gray cape
nobody wears.

I’ll get tired, I know.

My legs will protest,
and I’ll hear a cup of tea
calling to be made.

The wind will slam
something solid
against the siding,
insisting on inspection.

The doorbell may ring,
the emails chime,
the text messages
which make a stream of song
mysterialize
from another room—

all will
summon my attentions,

and when I stop looking
for the self I lost
here, somewhere,
near,

I’ll settle with the cats,
who always tell the truth,
and ask them
where I am,
who and why,

and their answer will be
same as always—

You are right here
silly human.

You are always right here.

–Melinda Coppola


Dear Future Roadmaker

It’s still April, still Autism Awareness month. I’m thinking, as I so often do, of all the people I have met on my journey of raising a daughter with special needs.

There have been some wonderful teachers and some exceptional therapists (physical, occupational, speech and language, to name a few). There have been good hearted caregivers, van drivers, and medical professionals of all kinds that have made a huge difference in her life, and mine. There were, and are, folks from various agencies providing information about and access to services and assistance. There has been an unfortunate number of people from each of those categories that were not helpful, supportive or kind as well, and a few who brought great distress to Bink and to those who love her.

And then there are the other parents. I am a woman of many words, but I cannot adequately find the right ones to describe the love, support and comfort I have found in a tribe of others who are parenting an individual (or two) with special challenges. Most, but not all, are mothers. I’ve known some for over 20 years, and some less than a year. I am certain there will be many more I’ll come to know along the way. Some have children with multiple or well defined diagnoses. Some are parenting in the grey zone, struggling to find their children of all ages the help that might coax them to leave the house, or find a little job––a foothold in a world that has little patience for those who look “normal” but struggle to function on their own.

We lift each other up. We listen deeply, hearing the unsaid words beneath and between the audible ones. We try to check in on each other. Sometimes, it’s as simple as a ” How is _____ doing?” And a sigh or a quiet ” Just OK.” can speak volumes. If one of us learns of a new way to get help or a new service, program or activity, we want to make sure we share that information. We also understand how very possible it is to have no time or energy to communicate for many months at a time.

So many parents have helped me along the way. It’s important for me to try to do the same, especially for those with younger and/or more recently identified children. The following poem came from this place of deep appreciation and desire to be there for others who are walking the same road.

Dear Future Road Maker

I promise
this will pass.
Not the diagnosis, of course,
not your cellular memories
of initial shock, sadness, despair.

But this crisis,
the one that’s shredded
your equanimity,
kept you up some nights
for months,

the one that involves biting
and teachers,
veiled threats from
Those Who Decide
that Johnny may not be appropriate
for their coveted program,

the lauded school
that took
five meetings,
twelve months,
most of your energy
and an attorney
to finally welcome him
into their fold,

It will pass.

Toilet training:
Above all
don’t despair,
I can tell he’s going to get it,
nine is not too late
in our world.
Give it time.

Your current devastations;
Johnny rides the short bus
and there’ll be
no prom,
no diploma,
no college or
wedding or
career—
this will pass,
give it time,
these things will fade
into insignificance,

and besides
short bus=fewer students,
fewer stops,
less sensory overload,
and sometimes,
a kinder driver.

There are special proms,
if he is so inclined,
and nice certificates
of completion, now.

Take a breath,
safeguard your energy,
for you will need
every precious bit.

Choose your battles,
don’t try to war
in many places
at once,

and know this:
I am here,
and there are many of us,
veterans who faced
that forest,
stepped into the dark
growth and
trod the faint
paths left
by those who came before us,
and we are
making roads of them.

Don’t underestimate yourself
or your son.

You will both grow callouses,
you’ll know such triumphs,
and despairs you fear
will wreck you.

They will not.
You will emerge tougher,
a warrior advocate,
and we’ll be there,
all the road makers,
cheering,

and someday
that documented
list of deficits,
all his Johnny-can’ts
and Johnny-won’ts
will cease to faze you.

Mama lion,
future road maker,
mark my fervent words:

Your child,
son of your heart,
will surprise you
and amaze you
and make you
very,
very
proud.

–Melinda Coppola

April is…

I’m truly grateful to be here to greet another April. It’s such a hopeful month, with spring springing up everywhere. This month is also known as Autism Awareness Month. To those who love someone who lives with autism, every month, week, and day is a new chance to be aware. Insert my face with a pleasantly wry smile here.

Bink appears younger than her twenty six years. She could easily pass for sixteen. When we are out in the world doing the things we do, people will sometimes ask me,” How old is she?”  If I’m reasonably well rested and have my patience and understanding handy, (the extra stuff I save for strangers) I’ll smile and turn to Bink. “ Would you like to tell him/her how old you are?” If I’m running low on all that, I might just assuage their curiosity by telling them Bink’s age. Occasionally, if I’m really worn thin I’ll just pretend I didn’t hear the question. The alternative would be to answer their question with my own, and I might not smile at all when I say, ” Ummm, she’s right here. Why don’t you ask her?”  I rarely go there, because I truly believe that most people mean well. We’ve all just amassed a bunch of suppositions, based on our lived experience.

Sometimes, I imagine my daughter as one of a million special messengers from the great beyond. Perhaps her given mission is to offer a pause button, to give observers an opportunity to alter their assumptions. Her perceptions are so very different than what is considered mainstream. They have the power to shake interested minds in a gentle way, like a breeze shakes the leaves on the trees.

I offer my directive with the very best intention: Presume competence, people. Please.

 

—Melinda Coppola

Our small eyes

Perchance

Perhaps nothing begins
or ends,
not exactly.

The field mouse knows
the tall grass
to be her world.

We say
morning comes,
and yet
it is always
somewhere,

just not in the very front
of our small eyes.

The trees are wise.
They know everything cycles,
seed to sapling,
strong trunk reaches skyward,,
and wind-felled trunk
becomes home for owl
and mushroom,
then fertilizer for forest floor.

Last night
something gentle
grasped my hand,
and I turned towards my partner
who wasn’t there.

Perhaps death
is neither end
nor beginning,
and that
which we name loss
is just a shift
beyond our modest
range of vision.

I want to think
my father came to visit,
or one of my grandmothers.
just to reassure,
just to say,
in Albanian—
which they wanted me to know—
just to say
It’s all going to be alright.

 

_Melinda Coppola

 

 

 

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Love is a Rendering

Love is a Rendering

 

Telling you how I love you
is like trying to find things
that haven’t been said
about the ocean.

My hands prefer to paint it—
affection, water—
sweeping, striped backgrounds,
turquoise and deep
salient greens,
silvery whites frosting
every liquid peak,

and there’s the sky
hovering above the seas
like a mother,
cooing and cajoling
smoother, smoother now.
You mustn’t tip the boats,
or dunk the sailors.

On the shore, wild
coastly rocks, and
the dark of cast-off
tree limbs
adding interest and balance
to the composition.

Further inland,
I love you like new snow
frosts the grass,
like blue melds with ebony
to make the nocturnal sky
sing midnight,

like the way those
ensuing wee hours test
the nerves of first time
campers
in their thin tents
along random pieces
of the Appalachian trail,

but fear doesn’t win,
dawn always triumphs,
breaking their sleepless faces
into chapped grins
as they whisper
I made it through I made it through
nothing will get to me or you.

 I love you like that.

Our word is song,
lilt, flow.
Our word is comfort,
as in I knew you
before you were born,

before you were separate
from the great meld
of souls waiting to enter
their chosen bodies,

and someday,
when I need to go,
please don’t say
you lost me.

Know, instead,
that I live on,
around you
and beside you,

in your first
waking thought
as you chide the cats
for meowing before dawn,

and as you rotate the dishes
just the way
you know
they told me to do

and as you bless your gums
by flossing frequently,
and gratefully,

as you pull
all the way over,
leaving the phone
in the car
so you can stand and stretch
and take in the sunset.

That little rustle
you’ll barely hear
could be autumn leaves
swept along the dry ground
by the wind,

or it could be me
whispering
be present,
be present.

 

–Melinda Coppola

 

 

 

 

 

 

 

Dreamed some dreams

“A DREAM NOT INTERPRETED IS LIKE A LETTER NOT READ.”
— The Talmud

Last was a night of serial dreams, each building on the tangled mysteries of the one before. There was big sky, and journeying. There was an impossibly tiny stream and a dusty, broad road that earns the title of a trespass, as it forced a run alongside it. Yes, I said force. If that gives you pause, you may be unaware of the personality traits of waterways, that some welcome the paths that trace their every liquid curve, becoming roads. Some are flattered by such close attention, and others want no companion, no ardent fan to copy their every fork and dip and turn.

I know my boots kicked up dust along said trespassing wanderway, and judging by my sore soles on awakening, I walked miles and miles. One dream had me singing to the glinting snake of a river, cajoling and encouraging it to flow bigger, stronger, to make itself known against the green grasses that stretched away on either side.

The next dream, much more detailed, had me tiny as the river, a miniature woman in clothing that was elfin, or medieval, or some odd mixture of the two. The mini me was weaving blades of grass that were long and wide and heavy to my tiny hands. I remember the aches in the little dream hands mirrored the particular complaints that have settled in my hands in recent wide-awake life. I remember asking my dream self if perhaps this was the real life, and the other one—with its hours of daylight and driving and washing tea mugs— was, in fact, a dream. Ever industrious on some level, elfishly clothed me was weaving a wee canoe from the grasses. I think both dream me and awake me must’ve laughed at that. Miniscule woman, she of the teeny tiny shoes and the pointed hat, constructs transport from a weave and weft of grasses. She makes outsized plan to embark on an epic journey down dust speck river. As soon as she finishes her grass boat she hops in, tosses her plans into the breeze and allows herself to be flowed, because even little Who* sized people know Truth when they see it; we don’t push the river, we don’t freeze the wind.

There were other dreams surrounding these two. I know because I awoke with a mystery of dirt on one elbow, and some scent of lavender in my nose, and my first quick glance out the window caught a tendril of green, a curling thing, hanging from the just-dawn sky. Second glance showed no such thing, but that is The Way of it, after all. We only see what we are ready to take in, and even then it hangs around only as long as we Believe.

–Melinda Coppola

*Dr. Suess wrote a marvelous tale about Horton the Elephant and his startling realization that he was the only thing standing between the destruction of an entire colony of speck-sized people and the continuation of their peaceful way of life.  https://www.teachingchildrenphilosophy.org/BookModule/HortonHearsAWho

In praise of song

 

 

 

 

 

 

 

SONG STORIES

You open
your mouth
and out pours
a river
carrying the rhythms
of fluids—
blood and lymph,
tears, synovial.

It is current, and source,

keeper of memories
and the stories
of your ancestors,
and mine.

Song is the lilting thing
passed down
from breast to infant lips,
from old warrior
to young hunter,

and passed on
lover to loved,
cricket to cricket,
across the fields
and through forests.

It is the play of wind
between mountains,
the Earth’s drumroll
pre volcano.

Song is the ancient
chants of the native peoples,
sacred contract
between the land
and the beings She
once welcomed,
and now strains to support.

Song is the chasm,
the lightening, the divide
between keepers of light
and keepers of darkness,
and those being born,
and those who are dying.

There isn’t a breaking dawn
without the heartbeat of earth,
the symphony
of wings rubbing together,
of claws scampering
up and down the trunks
of trees whose leaves
make whistle

out of breeze.

There isn’t a dusk that settles
without the howl of coyote,
the barking of prairie dogs,
rattle of snakes,

and the sea
with her incessant breaking
and pulling back,
giving rhyme
to the arrivals
and departures
of tides, and storms,
and stones.

Song is the hum
of all life,
natural and now
created—the talking
screens and the bots,
the drones
and the buzzing wires
that link us
and divide us.

Space,
that ultimate infinity,
was once thought silent,

but now we know
it’s out there, too—
the Song, wild and
roiling in the
gravitational waves,

bouncing
between howling
planets
and whistling
gasses,
celebrating the spaces
between things.

 

-Melinda Coppola