So many ways to say it. Be Here Now.

 

 

 

 

 

Between

Opening the red door to a new spring day.
my feet greet crumbs of last year’s leaves,
dotted with recent, light green pollen
all swirled into the little cove, entry
that guides me into and from
this place, this home,

and they rattle a brittle kind of music
together, new and old,
crunchy and soft,
before I even lift a sneakered foot
across the threshold.

There it is—a word, a season, a sound;
threshold, May, music,
and my mind goes to all the beginnings;
friends welcoming grandchildren,
my niece with a new Master’s degree,
and last eve, baby bunnies
shaped like promise
against the lovely, later dusk
in the front yard.

A poem, a sign,
seasons bumping up against
each other, and my mind
goes to all the endings;
one woman struggling with reason
in the wake of her husband’s suicide,
another, across the world, daily grieving
her young daughter,
who would be nearly eight now,
taken by a disease deemed too rare
to fund research for a cure.

Endings, beginnings, the seasons
tireless with their lesson plans,
and somewhere between
the celebrants
and mourners,
the rest of us keep forgetting
to be alive while we live,

and the wind keeps
reminding us—
breathe, breathe,
this too shall pass,
you too,

so be urgent with this
moment, press your face
into the grass,
let the musky earth
fill your senses,

get dirty
get wet,
leave the laundry
for another day.

 

-Melinda Coppola

Questions, Questions, Everywhere

 

When Bink was young, I didn’t know if she’d ever be able to ask questions. She had words at age three and four, five and six, but not in a conversational way. She didn’t point at things. Figuring out what she needed or wanted involved some combination of detective work, intuition, and guessing, the way it is with new babies. Could she be hungry? Well, it had been a while since her last snack. Did she need to be changed, or was she about to need that? ( She was very late to the toilet club compared to…well, mostly everyone). Did she want that toy she seemed to be eyeing, or could it be that her eyes were fixed instead on the fluttering leaves visible from the near window?

I got better at reading her actions and reactions. Her vocabulary began to grow. Still, no questions, no gesturing. I’d carry her to the various rooms in our home, finding assorted objects and pointing them out and saying their names over and over. When she got too heavy to carry, I’d toddle around with her and do the same thing. After awhile, I began to add the beginnings of a question. I’d point at something, try to get her eyes to follow my finger, and then say,” Wh, Wh, What. What is it? It’s a ….light! Wh, wh, what. What is the sound? It’s a …..doorbell! In front of the mirror it was Wh, Wh, Who. Who is it? It’s….Bink!”

Like many aspects of autism, the gaps in typical development were frustrating, and also fascinating. Bink’s inability to inquire about the world around her created an odd, passive dependency. I could never be sure what or how much she was taking in from anyone’s efforts to talk to her, or from overheard conversations, TV shows, or picture books. Weeks, months, even years later, I’d hear her repeat phrases or snippets of old conversation that told me she was absorbing more than most people thought she was. She didn’t observe others, but she did seem to be able to associate what people said with what they might do, sometimes. She and I developed an ability to communicate using pictures, gestures, and songs. I was her interpreter, filling in the gaps when kids and adults tried to communicate with her in the ways they knew. “ I think she wants….”, I’d say to them. “ Bink, Susie wants to sit close to you and play.”, I’d explain to her, while demonstrating this with my own body and a nearby toy.

I don’t remember exactly when she began to form the W’s. I know it took a long time. Years. The questions, when they came, were repetitive. Often, they still are. In fact, is not unusual for Bink to ask the same question during phases that last months, over many years, and multiple times a day. But I’m getting ahead of myself, as I often do.

Bink’s delivery gradually expanded from vocalizations directed at nobody in particular, to words sometimes uttered in the general direction of a person. Years later, there were more words, scrawled on a napkin that she’d leave on the table where, perhaps, someone might find it and be able to decipher it. Later still, there were typed lists. Many of her questions, now, involve why someone said a certain thing to her (or did something in her presence). It can be a challenge to explain why a certain teacher said a particular sentence on that second June Tuesday in 2003, or why her now deceased grandfather played a certain game with her when she was two years old that she didn’t like. The notion that he may not have realized she didn’t like the game is foreign to her. Doesn’t everyone just know what is happening in her head? Do others have different thoughts, feelings and preferences than she does? These concepts can be pretty advanced to those on the autism spectrum.

These days, Bink is a veritable fountain of questions, mostly about her past, and most of them are directed at me. “ I don’t know”, or “ I wasn’t there” is not a satisfying answer for her. I know she uses the answers as a learning tool, and so “ I wasn’t there, but I can guess” is my default intro to an answer that I hope will help her understand.

In a recent post, I shared some of the rituals and routines that punctuate life with Bink. Her Friday questions list is one of them. She types up a list of ten questions, titles it according to what is in her head, and I answer them as I think the named person or thing would answer them. It sounds convoluted when I try to explain, but this is part of the rhythm of our lives at home now.

If something is troubling her about why a certain instrument sound happened on a particular song on a specific CD, there may well be a list of ten questions for me to answer the way I think the song on the CD would answer them. Her Occupational Therapist, the one she loved and knew in 1997, used Jello animals during sessions. Bink has probably asked me about this two hundred times. Why did that OT use those animals and no other OT did? No iteration of my answers has satisfied her curiosity. There have been many lists of questions for Tina, the beloved OT who died long ago, typed out for me to answer them the way I think she would answer them. Maybe someday Bink will be able to accept an explanation that you or I would find eminently reasonable, and then she’ll close this particular file in her head. Until then, the questions will continue, asked and answered slightly differently.

I admit that the questions list is often a challenge for me, and something to fit in between all the other things that demand my attention. Yet, I remember myself as Bink’s  young mother,  twenty years ago. I imagine she and I, meeting today for tea. “ What do you mean, too many questions?,” she might sputter, eyes wide for emphasis. ” Do you know what I would give to have my little Bink ask a single one of them?”

I’d have to be humbled, and tell her she’s right. I used to just hope and pray for that which sometimes overwhelms me now. I know Bink’s questions are a banner of progress, and a reminder that she is always learning and growing.

Indeed, if my young mother-self were sitting with me now, I’d reach across the table and take her smooth hands in my older, weathered ones.  “ Keep the faith,” I’d whisper. “ She’s going to surprise you and delight you and make you very, very proud.”

–Melinda Coppola

 

 

 

The Beach Stones

The writing prompt was clear and simple: “Today, write about an object that magically transports you to a different mood, a different state of mind, or a different time, filling your life with instant wonder, curiosity, or delight.”  My response was unequivocal:

 

When I am freed to walk a stony beach, my heart transforms herself into a fluttering bird. Her wings beat out a simple song against my rib cage, the bony bars of which expand with the gift of incoming ocean air. Tap tap tap, and then she is gone—soaring, a silent gull alone, surveying the riches of smooth, rounded stones that adorn the sand below her.

Further, I am always privileged to be among them, those smooth old stones that have been tossed and rolled and juggled by the ocean and the years. Spending time with these life forms—for they are very much alive— is a form of grace, a vitalizing and soul saving interlude in the midst of the everything else-ness of continuance in this body, in these times.

There is nothing that brings me such pure, unadulterated delight as a chunk of time with the stones, which rest against the sand like diamonds sit in their jewel box , upon velvet.

–Melinda Coppola

 

 

 

The Poet Says….

Allow me to share a poem that debuted on the Songs of Eretz Poetry Review this morning. This is the third of my poems to be published there in the Last week. All three are eligible for the Readers Choice Award contest on the SongsofEretz.com    Voting begins March 1!

 

The Poet Says This is How You Should See

 

A prism is lifted to the sun. Imagine
a million nuances of color and shine,
fractal languages of symmetry
resting perfectly
between breaths or heartbeats.

The artist knows the power of spaces,
without which there would be no means
to shape the eye’s longing.

Musician has this same knowing,
gleaned through the eardrum’s
oscillations: there is no song
without pauses
between notes.

Someone in your diaspora of friends
will die tonight, and in the moments
between last exhale
and the doctor’s legal declaration,
a poem is written on the window
in frost. It lingers

only as long as two pairs of eyes can see it,
and if the heart that goes
with one pair can hear it,
a song will be born,
and if the soul that goes
with one pair can see it,
here will be a rendering
in charcoal, or paint, or crayon.

This is how life continues;
The poetry between things
must draw the attention
of some realized aspect of God,
like you, or you,
and your near-desperate desire
to interpret the miracle
becomes the language, the love, the soil
from which
something else can be born.

–Melinda Coppola

The Goddess of Every Little Thing by Melinda

Returning to Autismville

 

Good day!

Below, the second of three of my poems that are eligible for the Readers Choice Award over at Songs of Eretz. 

Here is the poem, along with the Editor’s words and poets notes from the journal:

Editor’s Note:  Nominees for the Songs of Eretz Readers Choice Award have been or will be published/reprinted in Songs of Eretz Poetry Review every weekday from February 19 to February 27.  Vote for your favorite in March by sending an email to Editor@SongsOfEretz.com.  The winner will be announced in April and receive a one hundred dollar honorarium.

Autismville

Melinda Coppola

I can’t tell you
it is an unpleasant thing
to live in the quirky neighborhood,
on the far side of the river,
a good ways from the thickest part
of the frantic throng.

Here, we are daily looking up,
fixating and stimming
on green minnow leaves
that shimmer against the waters of the sky.

Here we have our own customs;
the daily waking song,
the recitation of dreams,
the morning questions and videotaped answer
for her to play back over and over,
the reassurances:
Yes, there will be snack. Yes, Mom is a girl.
Yes, there will be girl hair when we leave.

The life we’ve grown into,
first she and I and then he
who married into this confluence
of ordered disorder,
this life has authentic charm.

We go slow, we don’t try to measure up.
Our victories are sweeter
for how long they take to manifest
and mysterious
for how quickly they can disappear.

I can’t say it’s tragic in this virtual village,
this parallel universe
peopled with other singular folk
who understand the need for things
like space and processing time,
patience and velvet compassion,
smooth voices, soft dolls,
sweet routine and
more spice in everything.

We have magic here, I tell you.
Songs that play in color,
voices with texture,
folks who spin and swing and
hum and sing.

And the leaves! The glorious
minnow leaves,
dancing upstream,
between the clouds,
and laughing.

Poet’s Notes:  My young adult daughter lives with my husband and me.  She also lives with Autism, Obsessive Compulsive Disorder and a great deal of anxiety. She presents as quite challenged to the uninitiated eye, and our lives are far from typical.

I often feel that we live in a parallel universe, moving at an entirely different pace while the world speeds past.  The children of friends and family meet their expected milestones and move on, and we amble and pause, spin in circles, and forge our own footpaths through the weedy brush. Our milestones are different, but if and when they come, we celebrate them well and take nothing for granted.

It’s not an easy life but it’s also not the grand tragedy that some people seem to believe it is. I wrote this poem to offer a different perspective to those who feel sorry for us and those who move in the faster, more conventional lanes.

About the Poet:  Melinda Coppola has been writing in some form for nearly five decades.  Her work has been published in several magazines, books, and periodicals including I Come from the World, Harpur Palate, Kaleidoscope, The Autism Perspective, Spirit First, Chicken Soup for the Soul, Welcome Home, and Celebrations.  She is an artist, yoga teacher, and mother to an amazing daughter with special needs and enjoys infusing the work of her heart with her voice as a poet.

Coppola nourishes her creative spirit with singing, early morning walks, collecting and making art with beach stones, cooking, spending quiet time with her husband and daughter, and communing with her cats.  This poem was first published on her personal blog twenty four may on June 8 2017.

 

7 AM, Redux

Dear Reader,

I’m so pleased to share my first of three finalist poems from the Songs of Eretz poetry contest. Though I didn’t win first place this year, each finalist poem is eligible for the Reader’s Choice Award.

Steve Wittenburg Gordon, the Editor of Songs of Eretz, published the poem and the following commentary on the site today:

Readers Choice Award Contest Poem: “7 a.m.” by Melinda Coppola

Editor’s Note:  Nominees for the Songs of Eretz Readers Choice Award have been or will be published/reprinted in Songs of Eretz Poetry Review every weekday from February 19 to February 27.  Vote for your favorite in March by sending an email to Editor@SongsOfEretz.com.  The winner will be announced in April and receive a one hundred dollar honorarium.

7 a.m.

I entered your room quietly,
with loving stealth,
stood inches from where you slept
curled into the warmth of your sleep nest,
pausing one round moment
to take in the sight of you, just
to hug you with my eyes
before we began
the ritual we’d perfected over
two decades of mornings.

There we were
in our assigned places,
me leaning gently above,
you just beginning to stir
as I sang you awake.
There were your hands
reaching for my hair,
first right side then left,
like always, like a touchstone
to remind you it’s safe
to be awake and alive.

Pink walls and ceiling, pastel rug,
whispered, made-up song,
you under soft
layers of things;
assorted spreads, a quilt, some blankets,
one embroidered with your name
and the date you debuted,
a gift at birth from a relative
on your absent
dad’s side that met you
once maybe, whose name
I’ve quite forgotten,
who is surely long dead.

I flash-mused on what she’d feel,
this nameless giver of named blankets,
if she could ghost unseen
into your bedroom, this morning
to see what you’ve become.

Would it be grief
for all the ways you’ll never be,
the way you arrived
with unseen challenges,
diagnoses not yet named,
a baby who would remain,
in many ways, a child?

Would it be curiosity,
your differences intriguing,
offering perspectives
she’d never considered
while alive,
tapping on the doors
of her phantom compassion,
awakening a deep patience,
a human reunion with her own
estranged otherness,
the selves she, while living, shunned?

I hope she would be filled
with the color of pure delight
as she saw you still loving
her decades old gift,
for its essential pinkness,
its enduring softness,
its well-named comfort
in the place you call safe,
in the place you dream,
in the place you are perfect
with no one there
to tell you otherwise,
in the place you dream.

 

Poet’s Notes:  My young adult daughter lives with Autism, Obsessive Compulsive Disorder and a great deal of anxiety. She is a stranger to the ways most of us learn to survive and thrive in a confusing world. Her vulnerability is a big concern for me, yet she is finding her own ways to cope and to calm the sensory storms any given day can present.

E’s pink room, and her bed layered with soft blankets that echo the colors of the walls is a place of refuge for her. The rituals that we’ve created give her structure and comfort.

In this poem I tried to capture the tenderness of a morning moment before I sang her awake, when my eyes went to the monogrammed blanket on her bed. I imagined the giver joining us in spirit in that pink room, seeing that baby blanket. What would she understand from this scene?

About the Poet:  Melinda Coppola has been writing in some form for nearly five decades.  Her work has been published in several magazines, books, and periodicals including I Come from the World, Harpur Palate, Kaleidoscope, The Autism Perspective, Spirit First, Chicken Soup for the Soul, Welcome Home, and Celebrations.  She is an artist, yoga teacher, and mother to an amazing daughter with special needs and enjoys infusing the work of her heart with her voice as a poet.

Coppola nourishes her creative spirit with singing, early morning walks, collecting and making art with beach stones, cooking, spending quiet time with her husband and daughter, and communing with her cats.  This poem was first published on her personal blog twenty four may on April 20, 2017.

Putting My Foot Down

Putting my Foot Down

I’m no stranger to disability. I’ve been Bink’s mom for 25 years. I know lots of individuals with varied special needs, some of them my Yogabilities™ students. I count a few of these folks and their families among my dearest friends. That said, I’ve been experiencing a temporary kind of disability as I continue to heal from foot surgery, and it has been so eye opening.

Forty nine days an invalid, and not before this post-surgical stretch of days and nights, chunks of hours so similar their names became blurred, Janu-monday and Satuesday, not once before this did I ever take notice of the way the word invalid is a devious thing, a means to invalidate, as if the millions of couch sitters and chair wheelers and bed warmers and leg elevating folks everywhere are less than whole. As if those whose full status as owners of walking, driving, autonomous bodies that move well through the world makes them more valuable or relevant.

Mine has not been a long sentence by most means. Having just recently received the invitation to commence a slow reunion of foot and floor, with crutches sprouting from my tender armpits, my limbs are stiff and recalcitrant, and yet they still remember full mobility.

There is the variant pain in my titanium-enforced right foot, the weakness in the calf, the instability of a body not used to normal biped motion. There is knee pain in the left leg that faithfully supported me throughout and in the right leg that was forced to rest. There is general hip malaise, and my neck constricts despite the Yogic stretches and rolls. Hands ache for mysterious reasons. Still, driving, or even emerging from my home on two sturdy, unaided legs, is surely on the horizon. Not close, but I can see it out there.

My first tentative pushes of sole against solid ground have been uncomfortable, to say the least. I’ll take the pain, though, and thank it as a bridge to full recovery. My calendar has been oddly blank these past few months, but February feels like hope. I know in a few years time these homebound winter months will be my mere memory. What will remain: an aversion to that word — invalid— and a far larger room in my consciousness for those that stay in for reasons not of their choosing. There are those that are recovering and those that never will, those for whom in is all there is.

Thank you, God/Goddess/Source of all, for continually offering me ways to expand my awareness. May I use the lessons to make differences, however small, in a few lives along the way.

–Melinda Coppola

 

Inappropriate THIS

Inappropriate this

I love Caillou. For those who are unacquainted, this is a cartoon show about a little boy by this name, geared to toddlers. “Yes,and….” you might say. Well, my twenty-five year old daughter loves Caillou, too.

That statement might seem unusual in the world of “typicals,” those whose wiring is neurologically consistent with what is called normal. It is NOT unusual in in the world of Autism and other special needs. Many, many people with Autism and/or Intellectual Disability have a deep affinity for toys, music, TV shows, books that are geared to younger kids. While this may be common, it’s often discouraged.

My daughter, whom I call Bink when I write about her, is a young adult who lives with Autism as well as Obsessive-Compulsion and a good deal of anxiety. Bink has long loved kid’s music, and stuffed bunnies and ducks. Dolls didn’t really pique her interest until she was about twelve, but since then she is enamored with them, as long as they have pigtails. She is fiercely attached to her bed dollies (always two) and her car dollies (one in my husband, Super Guy’s car, one in mine). She also loves shows geared for toddlers, like Caillou, Peppa Pig, Dora the Explorer and Daniel Tiger’s Neighborhood. For those proclivities alone, she has probably heard the word inappropriate twenty times more than your typical 25 year old. Her behaviors have elicited many dozens more, but that is another chapter, for another time.

Stamp it out?

Where has all that aforementioned discouragement come from? Well, in Bink’s case it was teachers, Occupational Therapists, Physical Therapists, Speech Therapists. A few caregivers, and a significant family member. Sometimes, the disapproval even came from me, her mother, Chief Advocate and Interpreter.

Parenting a child with special needs is a process, a lifelong journey. I, like most of my special parent peers, started out overwhelmed, impressionable, uncertain and scared. It was easy, then, to fall into believing the “experts” and overriding my instincts. I was desperate to do anything possible to help my child. And all these authoritative Others made it clear; it is NOT OK for a 10, 16, or 20 year old to love toddler songs, rubber duckies, dollies and TV shows made for ages 2-4.

While I tried, at times, to curtail some of this love for all things toddlerish, I never totally embraced the notion that Bink shouldn’t have anything geared to much younger children.  She’s always had access to some of her very favorite toys and shows, though I did try to broaden her horizons, to expose her to books and activities and diversions that typical children her age tended to like. And she did and does enjoy some of these things. She likes Pavarotti, and Frank Sinatra, cookbooks and cooking shows. But she loves her comforts; dollies, rubber ducks, and, well, Caillou.

Truth is, many adults like toys and books and movies geared for children. I enjoy stuffed animals. Some are wild about Disney movies, or Matchbox cars, or model trains, Why should we hold our kids with special needs to a different standard? Why are we so hell-bent on trying to make them so different than who they really are, by making them more like us?

So, my gentle attempts to limit her time with child-like things didn’t last too long. The past five or eight years or so, in particular, I have encouraged Bink to be in charge of what she watches and plays with and listens to. She works hard to get by in a world that is fairly hostile to her kind. I want her to have as much of what she loves in her life as possible. But I digress. Let me tell you about the initial inspiration for this writing, which is…

Loving Caillou

Bink records things on her old-fashioned tape recorder. Things people have said to her, bits of her scrawled journal notes written in her own creative language. It’s not, then, unusual to hear her pouring forth streams of words from the living room where she watches TV. One day, though, I noticed something different. I heard the characters on TV say something, and she seemed to be saying something back to them. There were verbal volleys, two or three or even four sometimes, going back and forth. Over the next several days, I paid closer attention when I heard these exchanges, and also casually wandered into the living room to check this out. Caillou. Bink was talking back to him!

TV Caillou Mom: ” Come on, Caillou, it’s time for bed.”

Caillou: “ Oh, Mommy, I want to read my book!”

Bink: “ It’s OK, honey, you can read it tomorrow.”

Or

Caillou’s friend: ” Let’s climb this big tree!”

Caillou: “ OK”, as he begins to climb and then to lose his footing.

Bink: “Be careful, Caillou.”

Much of this is language lifted from the show. But it’s appropriate, it’s in context, and it is teaching Bink new words and the ways of voice inflection. And she loves these shows! A win-win, for sure.

The sports thing

Bink does not like group sports, or crowds, or lots of noise, and so she avoids them when she can. So when her day program let us know about an upcoming trip to Rhode Island to see the Pawsox play, a veritable trifecta of sensory sandpaper, she quickly opted out. No surprise, and this was fine with us.

Superguy and I walk a line these days, between encouraging her to try new things and respecting her right to choose. We talk to her about how things change, we change, and something we didn’t like in the past might feel quite different to her now. We also appreciate her slow growing self-awareness and ability to express herself, and honor that as much as possible. So I informed the staff at her program that she’d be sitting that trip out. A few weeks later, Bink spontaneously said ” I will try Pawsox.” !!!!

After I picked my lower jaw up off the floor, I praised Bink for trying something new. My assumption was that the staff at her program had been working to convince her to change her mind. In fact, they had not even mentioned this to her. Why the change, then? In our world this stuff just doesn’t happen much. I gently probed for clues, told Bink how great it was that she decided to be flexible, asked in a few different ways why she’d changed her mind. No answers came forth. I stopped wondering and decided to just enjoy the surprise.

Several days later…

Bink was sitting at the table eating. She’s serious about her food, folks, rarely wants to talk or listen when she is welcoming meals or snacks into her body. I was doing one of the hundred things I do in the kitchen, and I heard the words, addressed to no one in particular: “ I decided to try Pawsox because I saw it on Dora.” Insert! more ! exclamation! points! here!

Me:” You saw Dora playing baseball?”

Bink:” Yes.”

Me:” That’s great! Did it look like fun?”

Bink:” I didn’t know if play it or watch it.”

Me: “Oh. And you learned that you would be watching it, and that it could be fun to watch?”

Bink: ” Yes. There is popcorn and music.”

After telling her there may not be popcorn at Pawsox, and there may or may not be music at times, I decided to just let it be. And so did she. Thank you, Dora! Thank you, Caillou!

To those who want to tell me about how inappropriate it is to let my adult daughter watch her toddler shows, I have some advice. It’s pretty much the same words I’ll offer anyone who sees fit to tell me how my daughter ought to be, and how I ought to be parenting her: Inappropriate THIS!

–Melinda

 

 

It’s a Good Thing

The View from Here

Hello from my couch, where I’ve been planted for the majority of my waking hours for the past twenty five days. Who’s counting? I sure am. I’ve been following doctor’s orders post-surgery and elevating my right foot anytime I am sitting down. This is an improvement, since last week I was gifted with permission to stop elevating it while in bed. This can only be a good thing.

I left my most recent post-operative doctor visit with another gift, though I’m hesitant to label it as such. I said goodbye to the big awkward cast that had covered my right leg from just beneath my first two toes up to about an inch below the knee. In its place I am sporting ( Ha! Tongue so in cheek) a heavier and even more awkward black boot-like thing. It has noisy and strong Velcro strips that multitask beautifully, keeping the boot in place while playing catch-and-hold with large quantities of cat hair.

When I tell people I have a boot now, most assume I am doing what people do in boots: walking. Nope, I’m still diligently keeping any weight off that right foot, awaiting my next X-ray in fifteen days ( but hey, who’s counting!). I think that next picture will determine whether I’ve grown enough bone underneath the plate and screws to allow me to begin walking a bit in the boot with crutches. If things aren’t looking optimal, it could be two more weeks after that before the floor shall know the whole two-footed weight of me. When that time arrives, it will be a very, very good thing.

This has been such an interesting journey so far. I guessed there would be lots of rest, time to read and catch up on the House Hunters type shows I enjoy, and time to create art and poems and essays. I supposed it would be hard for my daughter who is so used to having me as her primary caregiver. Some of that has happened, but there have also been some interesting emotional day trips.

Chunks of memories have risen from the depths, some painful, others pleasant and enlightening, but all inviting me to re-examine the stories I’ve told myself about people and events from the past. As a Yogi and an introvert I’m no stranger to self-examination, but my hours of couch sitting invite a deeper dive. It seems my advancing years have allowed a kinder, broader perspective, and this, too, is a good thing.

Another side effect of this experience: I’m finding a deeper understanding of what it feels like to be dependent on others for basic self-care. I’m becoming acquainted with how isolating it can be to spend day after day indoors, at home, with no ability to get up and take myself somewhere.

I’m remembering all the friends and acquaintances and family who have had long recuperations from accidents and joint replacements and serious illnesses. And those who never did recuperate. I wonder about their experiences, and I see and feel the ways I could have been more loving, more present, more helpful. It’s not regret that fills me, but rather gratitude for the lessons and for the chance to do it differently in the future. This, then, is a good thing.

I’m not trying to bum you out, dear reader. This is not grim, not at all. I know I’m really lucky to be so temporarily disabled. I know I‘m among the privileged few world residents who have access to great medical care and procedures that can and will improve my quality of life. I’m not depressed, I’m not particularly bored, and I’m not spending much time at all feeling sorry for myself.

What’s clear to me: this forced period of limitation comes with gifts. The greatest of these may be a deepening compassion for others in similar and often worse circumstances. And this is a very good thing indeed.

-Melinda Coppola

Caregiver’s Lament

I’m on the couch, somewhere in between sitting and reclining. My right leg is extended out in front of me, clad in a cast to the knee and elevated on an ottoman with a large sofa cushion on top. My left foot is resting on a stool. This is a position I’ve spent most of my daylight hours in over the past ten days. At night it’s bed, elevating the right leg on that same big couch cushion, sometimes with another pillow on top. The only change in this scenario is that today my left knee is bolstered by an ace bandage and receiving regular ice packs in hopes of reducing some of the painful strain that has developed there. I guess it’s hard to be the only supporting leg, the one that enables me to slowly lift and lower and hop a bit to my next resting place–– bed, toilet, couch again.

I am ten days out from a planned surgery to alleviate long-term foot pain from the effects of an old injury. It was just over a year ago that I’d received a proper diagnosis: a ruptured ligament, probably from almost a decade ago. Since ligaments connect bones together (and provide a sort of shock absorption,) over time the bones in the top of my foot, which should be flat, moved. The surgeon described the odd arrangements as “ Bone tips coming out of the joints. A ski jump, and everything coming up from the joint looked like a volcano. The cartilage was almost non-existent, tattered”. All of this was exacerbated by time and lots of use. Probably over use.

It hurt. It hurt a lot and for a long time. Nothing helped much or for long. Still, I taught Yoga and Yogabilities™ and walked and ran up and down to the basement doing laundry and did everything I do as long as I could.

Why, after learning that there is a surgery available for cases like mine, with an 85% success rate…why did I wait? I am a caregiver to someone with special needs. Someone to whom I am the solid ground, the steady horizon, the predictable and understanding presence that enables all the pieces of her days and nights to work together.

I know what you might be thinking, especially if you don’t happen to be, say, a parent of someone with special needs. Hmm, Melinda sounds like she has delusions of great self-importance. Maybe she thinks the world can’t spin without her direct push.

And I get why you might think this, I really do. I’m not mad at you in the least. It’s not quite like that, though. I don’t think I can do most things better than others, or that I’m imbued with any gifts more amazing than yours. I am, however, the one who knows Bink best.

I know her intractable fear of beads with holes, and her pure delight in the deep male voices she calls Oreo. I know her requirements for space between things; rising and mint tea, her morning desire for a short video in response to a question. I know when I am to respond verbally, when in text, and when to not respond at all. I know what to look for after the clothes are on; a twisted bra strap, pants or a shirt on backwards.

I know how important the food talk is. What will supper be? What day will she eat that treat someone gave her yesterday? She is tired of the big pot of soup we made together just yesterday and says “ Don’t force me to eat it.” I know how to patiently answer a question for the fiftieth time, or the five hundredth, and when to push a bit more flexibility, and when that will mean disaster.

I know how the world alternately perceives her as less than, and also as someone who should be capable of more. I know how to keep her hydrated and clean and warm enough and I know the exact time of year her hands will chap because she doesn’t dry them thoroughly.

I know how to translate her idiosyncratic language for others and how to help her advocate for what she needs and when to step in and when to let things be. I know she really needs to get out somewhere every afternoon, and that this is no more rigid or unacceptable than your need to, say, have your morning coffee.

(Can you imagine, by the way, being entirely dependent on others to bring you that coffee, just the way you like it? Can you imagine being told that you shouldn’t need it every day, that you should be more flexible about this? That perhaps tomorrow you will not have your coffee at all because you should be able to get used to not having everything you want all the time? I digress, and for that I’m only slightly sorry.)

I know her by heart. She is my heart. And this forced semi-invalid state I’m in, this inability to directly help her with the tasks of daily living and with keeping the pantry stocked and cooking her what she wants and driving her to her program and ensuring her supply of soft pink shirts will not run out ….well, it’s really hard.

I have Superguy, who is going above and beyond. We have some help from caregivers. I am incredibly grateful for this and for the fact that this is a temporary thing. Not a day goes by that I don’t feel thankful for access to good healthcare, something most of the world’s people do not have. And I know Bink will be ok, and that she and Superguy and I will likely grow from this in ways I can’t imagine. I know this journey is rich with lessons.

It’s still damned hard.

 

–Melinda Coppola