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

MORE AUTISM AWARENESS: RITUALS

AUTISM AWARENESS MONTH: DAY 18

Routines and rituals. Don’t we all have them? Under the best of circumstances, they can add order, meaning and beauty to our lives. For many people with autism, they go beyond that, offering comfort, safety, structure, and learning opportunities. Life with Bink is rich with these practices and observances, ranging from daily to weekly to monthly. Many of her practices are entirely her own, needing no interaction to complete. Some involve me and Super Guy. I enjoy some, tolerate others, but over time I’ve grown to appreciate their place in our offbeat life. 

WEEKDAYS

There is the morning wake up song, delivered at 7am sharp. Each day’s song is different, and though they are short little things, I make ‘em up on the spot. Recently, I heard her singing in the next room. It took me a few minutes to realize that she was singing the morning tunes I’d created through the years (and on the fly)! Insert shocked-face emoji here. They were probably in order, too—something she’d remember but I would not.

EVERY MORNING

First, there is the dream journal, a wide ruled notebook set aside for just this purpose. Bink’s scrawled entries might be the thought that just entered her head, or perhaps they are indeed fragments of dreams. That’s a mystery, as it probably ought to be. She scribbles, and I read it aloud. Super Guy is an acceptable stand-in if I’m not available.

A short time later (but within fifteen minutes of her rising), there is a question or comment she texts me. (Bink is actually better with this than she is with face-to-face conversation.) She likes my response to be delivered via brief iPhone video. Sometimes, she asks a question about something current, like why we are not going on a vacation. More often, it is about something from her deep past. Example: “Why when I moved towards Miss S_______, Miss L_______ said sit down in a clementine cheese boy voice?” That might’ve happened ten or twelve years ago, folks, and I wasn’t with her when it occurred. It certainly does keep my creativity sharp coming up with answers to these!

DURING EACH DAY

There are the four household chores she’ll complete with wildly varying degrees of attention and accuracy. She marks each off with a check on her chore chart, a hand drawn thing we devised to help her learn the value of contributing to the household and earning money. There’s a choice of ten chores. Like any of us, she prefers some to others. The vacuum chore is perhaps the most challenging. Though she doesn’t have to do a lot of it to earn a check, there are many steps to the process. There is lugging the heavy vac from the broom closet, delivering it to the area that needs vacuuming, plugging it in, turning it on, and bringing the sweeper to an upright position. Then there is the requisite focus involved. She needs to first remember the purpose of vacuuming, and then to notice whether the random bits of guinea pig litter are actually gone after she moves the machine back and forth over them. Vacuuming is not a favorite task.

Other chore choices are more to her liking, including making her bed (an imprecise effort to turn the clumps of covers into a smooth layer, covering as much of the bed as possible), getting the mail from the mailbox, and helping to shop for food. Emptying the dishwasher used to be something she seemed to like, though that has been changing. Our not-very-old dishwasher has mysteriously failed to clean the food off the dishes about every third or fourth cycle. She hasn’t seemed to notice if there is food caked on the plates and the utensils, and though we oversee what she does, a few food encrusted utensils and a plate or two made it into our cabinets. Now, that chore has the added responsibility of looking to make sure the dishes are actually clean, which means we need to define clean vs. dirty and reinforce this every time. That’s an interesting thing about autism; there can be an extreme scatter of skills and understanding. Bink can often spell a word backwards, but shampooing her hair is an elusive task. She can remember the day, week and month someone said something to her that upset her, but she needs to have a rule to enforce attention to the actual cleanliness of the clean dishes.

Back to the chores list: she is such a rule-bound sort, and this means she is pretty obsessive about completing the chore chart. If daylight is waning and she hasn’t earned those four checks, she’ll tell us, with a certain urgency in her voice, that there needs to be another chore. Since she requires assistance with some tasks and oversight with all of them, on a busy day it can sometimes feel like a chore for all of us to get those checks recorded on her chart!

EACH EVENING

There is the daily recap, again in her scrawl, in a notebook designated for this purpose. The things she writes are almost always limited to what she ate during the day, and one memorable activity or outing. If someone has said something to her that she didn’t like, or in a tone she felt was harsh , that will make it’s way into the narrative as well. She wants me (or Super Guy) to read this aloud to her, but with no questions, please.

Next, after teeth are brushed and she is ready to get into bed, she wants an oral recap of what she did that day. She also wants to hear about what will happen the next day. This must include a reassurance that she’ll have a treat. ( Think tasty little snack, preferably sweet). There will be somewhere between five and fifteen nose binks and hair feels during this little ritual, depending on her anxiety level. This whole process has proved difficult when a caregiver was with her at bedtime, because she couldn’t know what had happened that day or what the next day would hold, so Bink accepts this good night ritual only from me. When I am not available, she just goes straight to bed.

WEEKLY

Each Friday afternoon, Bink presents me with a list of ten questions that she wants me to answer. Here’s the catch: she wants them answered as if I was a different person (or thing!). On the list she specifies who or what I should channel when I answer.

This can be as straightforward as Questions for Ms. K________, answered by Mom the way she thinks Ms. K________ would answer them. It can be as obtuse as Questions for I Had a Little Overcoat sung by Raul Malo, answered by Mom the way she thinks I Had a Little Overcoat sung by Raul Malo would answer them. Yep, that’s a song, folks, and a specific version at that. And so I do my best to answer each question as I think that former teacher might answer them, or a particular version of a particular song might answer them, and I leave the completed questions and answers, typed up neatly, on the table the following Friday, so they’ll be there when she returns home from her day program. If she isn’t attending her program that Friday, she wants them to be on the table when she wakes up.

I have many, many lists of these answered questions in a file on my computer. Sometimes, there are multiple volumes of questions for the same person or thing. Forty two Volumes of questions for Miss E_______, for example, or twenty eight volumes of Questions for Old P_______________ Road basement.

Why do I do this? I’ve discovered, over the years, that she learns a great deal from these questions and answers. They help her begin to understand things from a different perspective, which is no small thing for someone with autism. Miss K_________, Miss E_______, and any number of others have perplexed her with their words and actions. They are no longer around for her to speak with, or if they are, they typically have neither the time nor the patience to answer these questions, especially when they are repetitive.

She doesn’t understand some of the things that happened in that old basement in that former house. Why were there toys stored down there? Why didn’t she play there more often? These things stay with her and can cause her a great deal of anxiety and discomfort. She wasn’t able to articulate most of her fears and curiosities when she was younger. Now she can express some of them, and her weekly inquiries are a tool that allows her to consider and absorb more about the world around her. Over time and after many, many repetitive questions and their answers, she is beginning to grasp concepts that you and I take utterly for granted. People are all different, for example. Sometimes, they get angry, or impatient, or sad. Songs can come in many versions and be sung by many different artists. Basements are places people store things.

Saturday night, there is the new chore chart we’ll put up on the refrigerator door, which is also when she receives her pay for completing the previous week’s duties.

There is the Sunday selection of a recipe that she will make with me or Super Guy. This is usually a stew or soup that she will take to her day program during the week for lunches. There is the grocery shopping to buy ingredients for it, and then the actual cooking.

MONTHLY

On the last day of each month, her whiteboard calendar gets wiped clean, so it can be recreated for the coming month. Here, we list all the things we can know about in advance. Her activities, days off, and appointments are written out in erasable colored markers. This is an important thing for Bink, who is calmed by knowing what she can look forward to. It’s also an opportunity to review coping strategies, for those scary things like medical and dental appointments.

On the first of each month, there is the CD that Bink will make with Super Guy. This consists of ten songs that she will have preselected, and he will burn them onto a blank CD from iTunes. She’ll make artwork for the cover, and give it a creative name like Bumble of the Genevieve or Yellow Sunseed Girl. In the last few years, she’s favored titling these CDs with a female name and a fruit. Apple Cara, for example, or Cherry Dianne. We have dozens and dozens of these gems. The girl loves her music, and she will be able to sing a CD from memory, in order. When she is swinging in the backyard, she’ll generally be out there just as long as it takes for her to belt out a whole CD, and not a minute more.

There are other rituals that aren’t quite as prescribed. Upon eyeing a yellow car when we are driving, she will half yell/half sing the word Duck! The color of the vehicle must be just the right shade, though—not every yellow looks like a duck. Another car ritual involves her spotting a license plate with triple or quadruple numbers on it. They must be in a row, not divided on the plate. Then she’ll proclaim what she has seen. “ Triple eights!”, or, “ Quadruple fives!”. Interestingly, she is not saying these things to engage the driver, does not particularly care whether anyone responds. She just needs to blurt out her findings, and seems quite pleased with this.

Sometimes, well-meaning people have been critical of my parenting or of the ways Super Guy and I sustain these oddish practices. Some have implied that we coddle her too much, or that we oughtn’t acquiesce to routines that may seem childish.

There is a saying that goes something like this: When you’ve met one person with autism, you’ve met one person with autism. There is no one-size-fits-all description of a person on the spectrum. That said, all my experiences and understanding point to something universal: the world is a really confusing, challenging place for those who are wired differently. Things that you and I just naturally absorbed along the way and take quite for granted can seem foreign and nonsensical for Bink and others like her. She learns differently, in her own time, and repetition is key.

The rules that go with rituals and routines form a safe space for Bink. Within the comfort of the boundaries they provide, and with gentle and patient responses to her different ways of questioning, she is able to understand more about this confusing world.

Of course, Super Guy and I won’t be here forever to help her through things. We are here now, though, and we have a weighty responsibility to do everything we can to prepare her for eventual life without us. Our rituals and routines, rather than holding her back, have been an important part of her successes. They can change over time, as she changes. Eventually, the rituals may well be things she alone participates in, to calm and ground her. I find no negative in holding on to a coping skill that harms none. The more she understands about the world around her and the people who populate it, the better her chances for a meaningful, safe and comfortable life. That’s what we want for her. She deserves nothing less.

–Melinda Coppola

 

Your Repose

I’m pleased to share this poem, which made its debut yesterday, in the Songs of Eretz Poetry Journal. I’ve included my poet’s notes, which that particular editor requires, as well as his comments. I’m grateful to add another poem to my list of published  work. I’m also thankful for the support of my dear readers!

 

Your Repose

The dream stage, when the eyes dance
beneath closed lids,
that which we know as REM,
is also named paradoxical sleep,
because the body rests while the mind
is quite awake.

I wonder if your soul
checks herself in mirrors
as you slumber, scrolls
Facebook, idly clicking Likes
with her ethereal fingers,
as if this tiny dreamland act,
the flick of a mouse,
could change a lifetime’s course.

You, who walk the waking world
following all the rules you know,
making up some you don’t,
doing everything in order,
trying to make sense of the chaos,

You who counts duplicates;
numbers on license plates,
yellow cars in a lot,
who checks and rechecks
the solid fences of her world:
I will have a treat,
You’re a girl,
You will have girl hair when we leave,
Two sides, cheek bink,
Mommy can you fix it

I want to think you are free in sleep,
different, unconstrained,
that anxiety and compulsion,
autism and obsessions
can’t follow you
when you fly to that misty realm.

I want to think
you can have this respite every night,
relief from all the voices, and fears,
the tensions, demands,
that there is no standard
of normal in dreamland,
or, if there is, you define it,
you abide
quite comfortably there.

–Melinda Coppola

Poets Notes:  I often wish I could be inside my developmentally disabled daughter’s brain. The mystery of her inner landscape intrigues me as much as the mystical realm of sleep and dreams. This poem was conceived from my loving curiosity about the nighttime journeys of her mind and soul.

 

Editor’s Note( From Songs of Eretz Poetry Review):  The gradual turn that begins in the third stanza is nicely done, perfectly setting up the reader for the narrative of the autistic girl in her dream world.  The heartfelt wish at the close of the poem takes my breath away.

 

Find a link to the original poetry journal posting, by clicking HERE

Deliverance

Remembering my father

1.

The night your own
difficult breath awakened you, your lungs
spent from trying, and you sensed your heart,
that grieving well, slowing almost imperceptibly,
and your legs and arms refused command or
even suggestion to rise or sway
or go into the spasms you’d become
accustomed to, and your eyes opened only
slightly and your vision went grainy                                                                                                                                                                         like the silent films you remembered in some
distant part
of your collection of impressions, and the pain,
your pain which had become such a familiar presence,
first a nemesis that kept you riveted on the joints,
the muscle fibers, the mechanics of inhalation and
bladder control, then a graduate course that taught you
the location of your liver, your spleen, taught you the
intimate ways of the dying body, the ways of dying
with cancers; one, two, three kinds of cancers and kept
you faithful to your medicines;
two every four hours of the blue
one pink in the morning, the small white which accompanied every meal
when you could eat, the large ones, difficult to
swallow, that you could never remember
the why for…

2.

Did the pain lift and the light blur as you finally
let go the idea you’d ever, in that sad old body, heal?
As the resistance dropped, did you see them all at once,
the welcoming angelic beings as they opened
their ethereal arms to claim you? Did they come
together, in a circle, or did they grace you one
by one, enfolding your brittle bones as they reached
inside to help you glide out? Did you,
I ask, feel that peace as golden light flood
your dimmed perceptions, did you
groan before you let that last, stale breath escape
your windpipe, did it feel, as you left
like sweetest relief from a too-tight shoe?

3.

On your deathday, as we grieved, did you scan
the paths your travels had worn, did you revisit some
moments longer than others, did you regret?
Did you send comfort in each
sympathetic call, touch, hug, did you
make sure the children still laughed and
did you lift us up and sweep
away any traces of old
anger, unfinished business, that we might
remember you pure and silver, the flash of humor
in your Albanian eyes, the sage advice, the
bad jokes you carried in your well-worn pockets?

4.

We are all assigned an entrance and an exit,
or maybe we choose the exact moment and
the circumstances of our stay.
I waited out long nights and in between
the ordinary moments of days full
of toil and pleasure, greeted you at long
last in my own quiet heart finally echoing
all the questions, the answers glowing
in the dark, having been there all along,
like stars.

-Melinda Coppola

Barry of the Wind

The Names Project, AIDS Memorial Quilt

Have you ever dreamed someone alive again, someone long dead, whose memory visits rarely? Have you seen the watery shine of his eyes, smelled the shampoo lingering in her hair?

I’m talking about a dream SO real, you feel like you’ve stepped over the line between this reality and another, but your feet are firmly planted on some kind of hard surface. It feels like anything but dream state.

Recently, an old friend came to me this way, under cover of darkness. I could clearly hear his even, slightly nasal voice. I could reach out and touch that black jacket he always wore. It opened a thirty five year old box of memories, and I’ve been pulling them out and examining them from new angles, with older eyes.

In the early eighties I worked for a time at a health food store in Cambridge, Massachusetts. Thirty year old Barry was one of my bosses there. He was a slight, redheaded, soft-spoken guy whose flat affect belied a wicked sense of humor that took me some months to appreciate. Over time I became friendly with Barry outside of work, and when he moved to my Boston neighborhood, we’d get together at night sometimes, and walk and talk.

Barry loved the wind. We used to enjoy walking across the Longfellow Bridge that connects Cambridge to Beacon Hill. There, breezes seemed common, and sometimes they escalated to whipping gusts that would blow our jackets open and leave us unsteadily defending our relationship with gravity. “Can you feel it?” he’d say, “ Can you feel the power and the energy in the wind?”

I left the health food store for a higher paying job after about a year, but Barry and I stayed in touch. My tiny basement apartment on Irving Street was a short walk from his favorite bar, Sporters. Sometimes he’d stop in on his way there. Self-defined as happily wanton , he was always excited and hopeful for a rendezvous. This was the beginning of the eighties, and Barry was gay.

I’m not sure when he began to get sick. One evening we planned to bridge walk, but he called and said he had the flu. After that, there were sore throats, and later, an odd rash. Though he still frequented his favorite bars, he was often tired. He began to stop by less. I felt like he was avoiding me.

The early reckoning with what was being called Gay Related Immune Deficiency (or GRID) was in the news. Stories and guesses, educated and not so, swirled in the air. People were scared. Barry told me his former roommate had declared he’d remain celibate until someone found a cure to what some were calling the The Gay Plague. “I can’t do that,” Barry told me, “but I’m trying to be safe.”

John, a friend his, died. I didn’t know if they had been lovers, and I didn’t ask. On what would turn out to be our last walk across the Longfellow, we stopped in the middle and he said “ Can you feel it? It’s John. I think he’s in the wind.”

I suspect Barry was in denial, and he stayed there as long as he could. One night I awoke to a knock on my window. When he came in, he looked as thin and pale as I’d ever seen him. I didn’t address it. I think I was afraid of saying the wrong thing. Truthfully, I was afraid in general. Nobody was certain what was causing this mysterious illness, or exactly how it was spread. He sat down on the floor of my tiny, sparsely furnished studio apartment. I didn’t want to do anything to make my friend feel shunned, yet I was a floor sitter myself, and that day I stayed perched on my futon.

I might have offered some water or a snack. I don’t recall those details, but I remember the way he looked at me. I remember thinking that his serious expression wasn’t hiding one bit of humor anymore. “I’m having night sweats.”, he said at last. I wasn’t versed in the various symptoms that were possible with GRID infection, but I sensed a finality in his words.

Barry went back to his suburban childhood home shortly after that, and took up an uneasy residence in his old bedroom. His parents ministered to him. I visited there twice. The first time, he called me over to his bed and furtively handed me the key to his Boston apartment. He wanted me to get his stuff out. I knew he meant anything that his parents might view as incriminating. They did not acknowledge his sexual orientation, preferring to tell everyone that he was simply shy around women. I felt rather heartsick for him, imagining that a loving and complete acceptance from his parents might have meant the world to him then.

“Of course I will.” I wanted to be reassuring and nonchalant and as cool as the wind Barry loved. I wanted to be in that minority that seemed to stay grounded in the face of this frightening collection of symptoms that was taking lives with no regard to age, race or class. I wanted to be part of his support system, without question or judgment. I donned rubber gloves in his apartment, though, and threw them away afterwards with the rest of the things I gathered. As I dumped the bag in a trash bin, I felt a small, creeping shame.

A few weeks later his family finished clearing out the apartment. Next time I visited him in his childhood room, I brought the three packages of Sunny Doodles frosted cupcakes he’d requested. He’d been pretty vigilant about his healthy diet and supplement regimen for as long as I’d known him. It seemed he was giving himself permission to let go and enjoy what he could, while he could.

Shortly after that visit, Barry went into the hospital. I saw him there only once, when he was conscious but just hanging on. He had tubes in his arms and an oxygen mask on his face. AIDS had replaced GRID as the name for the devastating collection of symptoms showing up in increasing numbers, especially in gay men and some drug addicts. It was still fairly early in the epidemic, though, and there were elaborate precautions taken by hospital staff. Some visitors wore masks. I touched his hand but kept some distance from him, and then chastised myself for being fearful. His only sibling was there, and she took me aside at one point and thanked me for coming. She also bemoaned the fact that her parents still refused to acknowledge what was really happening. Again, my heart broke a little—for him, for her, and for a world that stoked such prejudice and erected sad barriers between people.

At Barry’s wake, his parents were impeccably dressed and stoic in their posture, trying to greet each mourner who filed past the closed casket. His sister was weeping in short bursts. After people paid their respects to the family, they gathered in small groups in the corners. I recognized some of them as Barry’s friends that used to come into the store. There was a group of men in Hawaiian shirts, laughing and talking as they shared memories. I guessed there was some special meaning to the shirts, and I also wondered if any of those men had been his partners.

There were some people from the health food store, and a High School teacher who remembered Barry from fifteen years earlier. I watched Barry’s sister leave her parents to move deliberately around the room and greet each person. She took the hands of many people in her own, and looked into their eyes. When she approached me she squeezed both my hands and asked how I was doing. Shocked at her selflessness and her concern for me, I remember fumbling over my words, trying to find the right ones and feeling an acute lack of maturity and grace.

Barry popped into my mind here and there for some years, certainly as AIDS garnered more attention. Precautions were outlined for everyone as the master immune compromiser began to show up in more segments of the population. The news told us that researchers were working feverishly to find ways to wipe out the virus and to mitigate symptoms in those already infected. I knew by then that I could never have acquired the disease with casual contact, and I held on to regret for my former fear and doubts. When the wind kicked up and tugged at my jacket and whipped my hair around, I tried to feel Barry in the rush of energy, but he never came.

After awhile, memories of him and that time faded a bit. Several years later I ran into an old health food store co-worker on the street in the Boston financial district where I was working. He told me that he and several friends approached Barry’s parents and told them they were making a commemorative patch for the Names Project AIDS Memorial Quilt in Barry’s name. His parents wanted nothing to do with it and even asked them NOT to put their son’s name on it.*  My heart cracked a little more that day.

I am not sure why Barry visited me in a dream. Perhaps enough time has elapsed that I can now offer my young self some compassion for having a level of fear during that time. Maybe, it’s the right time to honor the memory of a young man who loved the wind, a gentle soul who left us far too soon.

–Melinda Coppola

*Barry’s name IS on the quilt, in cotton candy pink letters against a pale gray background. I think he would have approved.

 

Tenure

I offer you gifts
of words newly strung
and tender,
strong and
sometimes proud,

words that are still humming
with the cadence
of my beating heart
from which poems burst forth
onto the page.

I call them my poems,
but we both know
this is folly.

The purled words don’t belong to me
any more than the morning sky
I kiss with my eyes,
or the breath I take in
that my lungs wring out
and return as something transformed.

Here on earth we
borrow things
like time
and plots of land
and beings that come through us.

we
label things ––
yours, theirs, mine

we
covet things
bits of shiny coin and
metal beasts that transport us,
wood boxes that give shelter.

We
think we own so much
of what passes though our lives

yet the Earth always reclaims
her soil
and rubbish
and creatures

as she’ll reclaim our teeth,
our fine furniture,
our soft organs and
all those volumes
of poems
I said I wrote
for you.

 

–Melinda Coppola

 

 

 

 

 

 

 

 

 

 

 

 

 

Poems, Interrupted

 

 

 

 

 

My poems want to begin, lately,
with waking from a dream,

at dawn, midnight,
3 am or other
portentous digits.

The words insist on that
inherent drama, dance
between two worlds,

the bridge that must be crossed
over moisture, under fog,
as if scrutiny can’t land there
and call out my penned donations,
one by one, into the light and
the critic’s laser eyes.

I wonder if I mother them,
those poems in process,
too much, too long,
which is relative anyway

like the average age of weaning
worldwide is four years old,
and in my country
it’s six months,
and what does that say about us?

You see how I diverge, I spin off,
deflecting hard attention
from the question at hand,
which is

am I smothering the poems
keeping them from emancipation
until they are
somehow perfect,
perfectly formed?

and

will all my lyrical children
perish from lack of sunlight

or,

if they do grow up
will they resent me forever,
end up in years of therapy,
succumb to addictions and
waste away,

quite far
from the eyes and ears
that might have seen their beauty,
or seen beyond their tired
dream analogies and loved,
or liked them anyway?

–Melinda Coppola

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

 

 

On Technology, Mobility, and Relinquishing Control

Techno Turbulence, with Mobility Hiatus Ahead

The daylight came,
an everyday miracle
and I rose to it
with pure intentions.

My poet’s heart drummed
insistent rhythm,
and I sang along
with equanimity.

Thing one:
A stack of forms to be filled
and filed on behalf of a dear one.
Make it yesterday, please,
An email implored.
Do it now do it now do it now.

Missing information,
more forms, phone calls,
passwords unknown,
log-ins shunned,
more than an hour of this,
and still my heart tapped,
and I could imagine poems
conceiving themselves in the space
between the beats.

Thing two:
An email announcing
Warning: Make this change.
Current system will become obsolete,
do it now do it now do it now.

There was a snag, and then
another, as snags often inbreed,
multiplying with unreasonable speed.
Four phone calls, information relay,
You’ll need to use your mobile now
and your debit card.
Give us the numbers.

I don’t want to give you my cell phone.
I don’t use debit cards.

No, Ma’am, you are not allowed
to be living without one. A mobile device,
and a card that sucks at your bank account
with no paper in between. No,
it is not possible to make this essential upgrade
without those conduits.

It was a weak song dribbling
from the flower in my chest, my lotus,
my center, my home.
It was a song nonetheless.

Thing three:
The upcoming surgery
will render you housebound,
one-legged, near useless
in the Ways of the Running of Things,
and well and truly deficient
in the Caregiving Department.

That’s just my primary occupation,
ensuring the health, safety, happiness,
comfort and continuity
for the two-leggeds,
one with special needs, one without,
and for the five furry four-legged ones.

It’ll only be some weeks,
six or seven or eight,
and then you’ll be among the mobile again,
walking on two feet ,
showering and trotting up and down stairs,
driving, even.

Beneath my ribs I sensed a hum,
weak yet audible,
and if it were a worded thing,
lyrical, elucidating,
it may have sung

Long night ahead, love.
Tuck yourself in tight,
prepare to lose control.
Dream deep and know:
daylight will come again.

-Melinda Coppola