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

 

 

Inner Child Remembers

young melinda coppola

Before The Tax

that adolescence imposes on body, mind, and spirit, probably in that order, there were hearty chunks of time that were some sort of unencumbered.

Inner Child remembers

discovering the fairies living well in tall flowers near the sandbox. How I loved to honor them, grabbing kid-sized chubby handfuls of sand and running through the tall stalks flinging the tiny granules. Oh, the sounds that Fairy Dust made! Songs in my ears and in my half-fairy heart. The magic-making kind.

The woods, the woods, the woods, acres of them, full of Brownies and Fairies and adventure. Long and free and wild days spent roaming the neighborhood, without fear or consequence.

On the first of May, I’d gather flowers from the garden and form them into weedy little bouquets. Carrying the wilting lovelies in my hands, I’d traipse ‘round to the neighbors. I’d stand on tiptoe to ring the doorbell, then place a bunch on the front steps, and dash out of sight.

One Christmas there was a little rubber duck, yellow. One of my older brothers had “wrapped” this for me by putting it into a huge box which he taped up. Made me wonder every minute until I got to open it. I loved that little duck so much, I’m quite sure it was my favorite gift that season.

Playing dress-up in the odd eaves above the stairs: I’d search the large steamer trunk housing big old velvet dresses, shapeless, and shawls. Layering myself in their heavy elegance, screwing rhinestones into my tender earlobes, shoving my small feet into pointy-toed high heels. I knew I was beautiful because nobody told me otherwise.

There was chocolate, sweet and smooth, melting in my hands, on my lips. There was the utter abandon of living well in my skin, loving having a body. No shame in me, yet. The eating for pleasure, until full, no thought of waist size or the “virtues” of making less of oneself.

Singing! Fancying myself an opera star, I’d belt out song after song, my 7 year old soprano notes echoing down the hall of that old childhood home.

After we moved from the big old white house with the gardens that housed fairies, I bonded with the small stream that ran through the new land. How I loved the deep mysterious smells of it, and the way it grew crayfish and little minnow things, and rotting leaves and mosses hugging stones.

There was the dreaming of horses, seeing myself riding them bareback and poised and strong.

Inner Child also remembers

watching poems write themselves, my hand dancing as the words flowed onto a notebook at my desk at the window.

There were the family trips to Cape Cod beaches in summer. My three siblings, my parents and I would cram into the wood-sided station wagon along with coolers and fishing poles, towels and beach toys. I rode in the way back, no such thing as seat belts then. At the end of the day, returning home, the tail lights of the other cars were Martian space ships. In fact, I was inevitably kidnapped by them, and they were forever whisking me away to an even better life.
—Melinda Coppola

SORRY

A woman and her young daughter
walked by me, heading opposite,

img_7491-3

Art by Bink. Looks like a girl flying to me!

on the narrow sidewalk
outside the Y this morning.

I’m sorry, Older She said
in passing
as women often do,
and though my mouth was silent
I wanted with all my heart to say

Please don’t apologize for taking up space.
If you want to regret anything,
be sorry for shrinking away,
making yourself small.
Anytime. Ever. You most of all,

a mother
to a daughter, will you please
lengthen, and widen. Stand up

and show your big glorious self

Spread your arms wide so
your daughter will see

how to fly.

My mouth stayed shut, though,
conscious as it was
about taking up room on my face.
and I thought, for the hundredth time,
the thousandth;
Those daily speaking engagements
Internally – thought,
Externally, conversation, —
are we not
often, or always,
speaking mostly, actually,
to ourselves?

– Melinda Coppola

 

On growing and knowing | Wisdom

wisdom tree

wisdom tree

The older I get the less I know. I woke with these words in my mouth, and they taste both new and true.

My birthday has arrived and this one is significant somehow in a way no others have been. Fifty five, as in 55! The exclamation point is genuine, because I am rather mystified at the speed with which time passes. Those numbers look so solid and substantial on the page. Time is one of the things I used to think I knew something about.

When I was young I thought I’d always know more as I got older, but I think I was confusing knowledge with wisdom. Knowledge says,” I know why the sky appears blue and when the tide will rise. I know which suspected carcinogens reside in that food and this shampoo. I know who the first ten US presidents were and where Albania is and how to say spring in Hebrew.” Knowledge knows from the head.

Wisdom does not concern itself with facts and figures. It doesn’t believe, it just knows. Wisdom is married, in a long-coupled and deeply familiar way, to an abiding trust in the ways of the universe. That loving marriage can bear many fruits, not the least of which is compassion. Wisdom knows from the heart.

Wisdom is humble, while knowledge can sometimes be arrogant. It seems to me, too, that knowledge is about acquiring, about taking things on, absorbing information. And knowledge can be incredibly useful for living in the world and getting by. Wisdom is about peeling stuff away, letting go of appearances and allowing the light and the darkness to complement each other. Letting go and allowing.

Part of my decision to start a blog relates to my relationship with wisdom. I’m moving closer to living authentically more of the time. This includes noticing and even embracing the fact that my head knows less than I thought it did. For example, I no longer know what path is right for you, why you act the way you do and why or how you can do what you do and say what you say. Wisdom means noticing and embracing that my heart knows more than I knew it did. For example, I know that when I trust my intuition I can flow with the river of life rather than try to swim against it. The blog? Intuition made me do it.

I look forward to a year of letting go and allowing, of knowing less and being more. And you know what, 55? That exclamation point looks good on you!