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.

The Uninvited Guests

What a time! We are seeing and hearing wide ranging effects of the Covid-19 pandemic on, it seems, every populated part of our planet.

In our corner of the world, Bink’s autism and accompanying dependence on schedules has collided headfirst with current realities. Every activity in her life, from her weekday program to her favored leisure activities, has been cancelled. Much of the structure she counts on has fallen away. Anxiety and perseveration, already frequent visitors in our home, have announced their return. They brought lots of luggage, too, apparently planning to stay awhile.

Will we get through it? Of course. Many have far worse situations. This is, however, a particular kind of challenge for Bink and others like her. She asks many questions, and fully expects me to have the answers.

Longing

to help you know
in your bones, child,
in your bones,
this will pass.

This will pass and
I’m longing
to have you know
we will again be free
to dip in and out
of those beloved scrawls
on your wall calendar—

horse riding,
and art class,
the candy and craft stores,
restaurants,
swimming at the Y,
and your weekly volunteer job
neatening the bins
at the toy store,
pricing stuffed animals.

You will
once again
return to your day program
where you may even welcome
those groups
you do not love.

I know in my bones,
which are just older versions
of your own,
that this will pass by,

all things do,
and we will re-rise,
rise again,
grateful and eager
to push forth into the
too-loud world,

carrying earplugs
and fidget toys,
your soft pink ball
of yarn.

Until then,
my frightened
full grown child,

I will be here,
right here,
to answer your questions,
daily, hourly,

No,
this won’t for last 100 days.
No,
this won’t be for your whole life.

Yes, we’ll go out walking
today
and tomorrow,
and every day.

No
this won’t be forever,
No
I don’t know the day,
the hour
it will end.

Yes,
the power will stay on,

this will pass.
I’m longing
to help you know
this will end.

—Melinda Coppola

Harmonious Discord

This morning I walked early,
mismatched garments
layered to repel a cold, spitting rain.

I’d pushed his baseball cap
down hard
over the knitted ear band
I bought to share
with her, which she
most emphatically rejected
for not being soft enough,
or pink.

Featherweight Bean jacket—
the one that lifts me to frequent
if silent praise
for its tireless rebuff
of even the most bitter winds—
warmed me companionably,
its soft arms moving along with mine.

This walking time—
tucked carefully into the space
between my early rising
and her wake up song,
before the gentle time to get up
directive I save for him—
has become sacred
in my other-centered life.

Rounding the first corner
of the favored route,
I looked down
and had to laugh
at mismatched gloves,
one pink and hers,
one turquoise, mine
by default,

and the shoes, laced oddly,
partially, with big gaps
between eyelets three and six

to nurture the well worn feet
whose dorsal surfaces
are temperamental, and
wavy as the sea.

The thought
and the smile
bubbled up together:
I am a walking exhibition
of my pieced together life.

This quilt of a family:
The daughter
with all her needs hanging out,
her talents slowly
coming to light
in explosions of art
and word
and song.

The man who adapted
to both of us,
stepping in, a little
closer every year,
to father her.

The felines,
who sleep tirelessly,
rising long enough
to eat and coat us
with their fur
of many colors.

Middle aging me,
holding it all together,
multi-hued patches of love,
bits of colorful string,
a plush batting of hope.

An ode
to harmonious discord
is not such a bad thing to be,

Said I to self
out walking.

–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

My Daughter, the Foodie

The Pies by Bink

Bink loves food. In fact, her relationship with it goes far beyond what tastes good and satisfies her hunger. She loves looking at cookbooks, finding recipes on the computer, and watching cooking shows. The painting subject she selects for her weekly art class is often something edible. The paintings on our walls at home, and the stacked finished canvases along the baseboard in the living room, depict pies, ice cream sundaes, candy apples, oysters, brie cheese, jars of pickles, and other things that make her mouth water.

She enjoys cooking and baking. Although she needs the substantial assistance of another adult and takes frequent breaks, her enthusiasm about picking recipes and helping to make them is always high.

One of my favorite observations about this love affair Bink has with food is the photography it’s generated. The girl takes pictures of everything she eats, or finds appealing. That “everything” means every rendition. If she tastes her own meal or snack and finds it lacking, she has learned to say, sometimes, that it needs more salt, or sweet, or some vinegar. Once the missing taste is added, she’ll take another picture. The food on her plate may look exactly the same as it did a few moments before, but to her it is quite new.

A definite omnivore, my daughter wouldn’t dream of eating pedestrian fare like hamburgers, hot dogs, French fries, or chicken nuggets. I certainly have no problem with her avoidance of those foods, and I do celebrate her widening palate. When she was three years old, she went through a phase where she would eat only blueberries and dry Cheerios. Neither is on her Yes list now. So, what does she eat?

Bink is attracted to the spicy, the sweet, the pungent, and the pickled. In her relatively short life, she’s enjoyed an enormous variety of comestibles that you’ve likely never granted transport across your own lips. She once had Ostrich Carpaccio with her father when she was about ten years old. She loved it, as she has also relished occasional octopus, eel, braised rabbit, many kinds of lamb, a rainbow of pickled plant life, anchovies prepared a number of ways, and a small variety of dried spiced crickets. She salivates at the thought of raw oysters and enjoys Teriyaki seaweed and ostrich jerky as a snack, when available. Very, very few of those things have made it onto my plate.
Most ethnic foods are yesses, especially Indian, Moroccan, and Japanese. She also loves many of the Korean delicacies her dear Aunt Young makes for her. Think homemade Kkaennip Jangajji (pickled Perilla leaves) and Japchae ( spicy glass noodles with vegetables).
Over the years, I’ve honed my cooking skills to suit her palate. Eggplant, bell peppers, smoked duck, goat cheese, and the above-mentioned lamb, are generally high on my own list of Will Not Eat. Still, I can handily transform them into dishes with an Indian, Chinese, or Japanese twist for my gourmet daughter.

Bink takes her lunch to her day program most days, and we plan those lunches together. On Saturdays, she’ll decide what she’d like to have for her lunches during the following week. We shop for the ingredients on Sundays, and cook more or less together most Sunday afternoons. Bink favors warm lunches, so typically she’ll take a lidded ceramic container of soup or stew, along with a side of something pickled or some sticky rice chips, and water. Yesterday morning, however, we had to cobble together a cold lunch, as her day program was headed to Newport, Rhode Island, wouldn’t be back in time for her to heat her lunch. She and I managed with anchovy fillets, some of my recent batch of zucchini pickles, Kalamata olives, and some coconut sticky rice chips, each of those foods nestled into a little Tupperware container. The beverage is always water, which makes it easier.

One of Bink’s quirks is that her food preferences can turn on a dime. When she requests something, it can come from memory, or from perusing cookbooks and The Food Channel. Sometimes, she’ll get very excited at one of my (or our) creations, and will eat it with gusto until it’s gone. Other times, she’ll enjoy it once or twice, and then I’ll get a text during a weekday, or she’ll announce at dinner or breakfast,” I’m tired of ______ (that thing that took two hours to make). ”

On rare occasions, we can negotiate a way to doctor the taste of the food with a seasoning or sauce, and she might deign to try it again. Often, though, she will not touch said food again, at least for a few months. So, we might end up with a container of some very spicy eggplant, or a soup that tastes and smells like strong fish sauce. I really don’t like to waste food, but Superguy and I just don’t have the stomach for some of Bink’s choices. We do know a few hardy souls who enjoy some of these things, so we can share some of the cast-offs as well as the excess from my more successful creations.

I’m well aware of how fortunate we are to be able to offer this quirky gourmet a variety of things she enjoys. It’s important to me that she eat as well rounded a diet as possible, and I have come to enjoy a little adventure in my cooking. Also, not all of her preferences are expensive or unusual. She likes particular pizza from certain places, and she’ll sometimes enjoy garlic bread and simple vegetable soups. Raw carrots are in occasional favor at the moment. She really likes sweets and baked goods, though she limits them to once a day and generally writes four NO TREAT days into her wall calendar. That last one is a story for another time.

Next month, Bink will turn twenty seven. Some kind friends, a family with a wonderful adult son who is also on the spectrum, have invited us out to dinner to celebrate in a few weeks. Bink is already anticipating an order of creamy raita, with just the right amount of tamarind and mint sauces mixed in, to savor with her Peshwari naan. She’ll probably share an appetizer of vegetable Samosas with me. Then there’ll be some kind of spicy lamb dish, and perhaps she’ll have a little of whatever curried vegetable there is to share. For dessert, she will be delighted with some cardamom scented Kheer (Indian rice pudding) or sweet sticky balls of rosewater infused Gulab Jamun.

Truth: Just now, on this Wednesday midday as I sat editing this piece for the blog, Bink called me from her program. That doesn’t happen too often, and usually it means Something Is Wrong. What was today’s message? “ I’m tired of the lemon risotto. Lunch I want balsamic mushroom barley soup tomorrow.” And so it is. Would anyone like a serving of perfectly good parmesan infused lemon risotto?

–Melinda Coppola

The Melting Popsicles by Bink

WALKING


At twelve, thirteen,
fourteen months,
when most children
begin to walk,
or make a show
of pulling their soft
wobbly bodies
to stand,

you were content
to sit and rub
the carpet, watch
the fibers grow fuzz
beneath hands
you didn’t seem to know
belonged to you.

A plump child you were,
with flesh-ringed legs
and arms,
at least three chins.

As you grew
stronger, my arms
did, too,
carrying you
room to room,
holding you
while you screamed
inconsolably,
and turned away
from others,

while you recoiled
at sights and sounds,
textures, certain clothes,
and any kind of shoe.

We didn’t know about autism,
not yet,
but I quickly learned
what brought you comfort.

When you were at peace
I could be, too.

I wonder
if you recall,
as I do,
when you were sixteen, eighteen,
twenty months
plopped on the grass,

making a study,
it seemed,
of the individual green blades,
your fat hands
brushing the tops of them
over and over,
your face some mix
of stern concentration
and happy fascination,

sweet reprieve from the screaming,
relief for my strong
but tired arms.

And still you grew,
and rebuffed
my attempts
to hold you up by the armpits,
sing walking songs
show you videos
of babies toddling happily
from toy to toy.

It was this,
the not walking,
that brought my questions
to doctors,
to Early Intervention,

that began the parade
of specialists and therapies
I never dreamed
would become our norm.

It was a blur in many ways,
that time,
but I recall when
you took your first,
tentative steps.

You were two
years two months,
finally ready
to trust your feet
against the hardness of the earth,

to step forward
into the blur of delight
and confusion
and newness
and noise.

–Melinda Coppola

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.

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

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