Accidental Advocate

Accidental advocate

Four years ago, I published a memoir about taking care of my Schizophrenic brother. When I was working on the book (Shot in the Head, a Sister’s Memoir, a Brother’s Struggle), I did research into national statistics on mental illness, and I was horrified. My family had always thought the poor care my brother received was a horrible mistake. We thought that his social workers must not have realized that the modern psychotropic medications—reputed to virtually cure psychosis—didn’t really help him. They must not have realized that he needed to live in sheltered, supervised housing, not be expected to take care of himself. But, to the contrary, we found this abandonment of people with serious mental illnesses (SMI) to be a nationwide scourge. He was one of hundreds of thousands, even millions of people suffering from serious mental illness, abandoned by the country’s mental health system, destined to a miserable half life of delusions, homelessness and victimization. More than one percent of our population suffers from schizophrenia (that’s over 3 million people), and more than half of them need the kind of care my brother needed. And they’re not getting it.

Most people with a serious mental illness cannot keep a job. Their families often try their best to help them, but they simply can’t handle them when they’re as difficult as my brother. They depend on social services, notably Medicaid, for health care coverage.  Medicaid does a decent job of  providing medical care to the least fortunate of our fellow citizens if they suffer from diabetes or bronchitis, cancer or eye infections. Medicaid pays for their care for physical ailments, even if it involves a multi-week stay in a hospital. But Medicaid funds, from its inception in the mid 1960’s, were barred from caring for people with a psychiatric illness on an inpatient basis. The legislation prohibits its use in the treatment of adults (persons between the ages of 21 and 64) in facilities having more than 16 beds for the specific treatment of mental disorders, a.k.a. institutions for mental disease (IMD). It also effectively prevents the management of long term supervised housing for people whose mental disabilities prevent them from living independently.

Congress included coverage for Alzheimer’s disease and intellectual disabilities in Medicaid legislation; many of us have a grandmother or other senior relative being cared for in a nursing home because of their dementia, the care being paid for by Medicaid. But when the Medicaid legislation was passed there was a concern that if IMD’s were included in the Medicaid program, the states would continue to warehouse people in hospitals instead of providing services in the community, which was their goal. That reasoning has not lived up to the promise, however. Without funding, most IMD’s have closed. Yet communities have failed to provide adequate comprehensive community-based services to take their place, leaving those with serious mental illnesses without adequate care.  No institutions are helping families care for their seriously mentally ill loved ones anymore. Those who are ill are ferried into ERs, then released with a bottle of pills and no real help—if they are lucky. In many cases, they end up in prison, or shot by police called to help the family when their loved one is acting out.

My brother Paul, luckily, never ended up in jail or shot by police, but he was given desultory care, at best.  He was too dangerous for us to let him live at home with us, yet the “adult homes” he was placed in were inadequate for the severity of his symptoms.

I determined that this had to change. I joined up with organizations of family members like me who were lobbying Washington DC for improved care practices. Organizations like the Treatment Advocacy Center, and advocates from Baltimore, Sacramento & Los Angeles, New Orleans—all over the United States. And things have begun to change. With the implementation of the 20th Century Cures Act last year, the Substance Abuse and Mental Health Agency (SAMHSA) has a new, cabinet level head of the subagency that deals with serious mental illness, and they are revamping its activities to make sure those who are most seriously ill get the treatment they need. I now serve on the communications committee of the National Shattering the Silence Coalition, an organization of activist like my self who are fighting to have the IMD exclusion to Medicaid repealed.

There is much more work to be done.  

And now I have added another cause to my advocacy, another response to my writing.

When my teenaged nephew died of a heroin overdose, I had no intention of getting involved in any further advocacy work. I wrote the poetry which eventually became my chapbook, Aftermath, from my sense of sorrow, not with any didactic interests. I found I had to slow down and let the grief sink in. Everything I saw around me was tinged with loss. I had to make sense of this, and of the changed circumstances of my family.  When more sorrows arose—the deaths of two people close to me—it compounded my grief. The collection became a kind of meditation on loss and a search for renewal. 

Yet again, I have found myself immersed in advocacy. I am appalled at the greed and ineptitude that have contributed to the opioid crisis. I am mystified at how little current treatment standards do to help people with substance use disorder (SUD) overcome their addiction and move on to a productive life.  I now speak out for tighter regulation to hold rehab centers accountable for the efficacy of their practices, including evidence- based practices for rehab treatment.  And I encourage efforts to hold accountable the drug companies whose aggressive marketing of drugs like OxyContin contributed to the crisis.

The news is filled with articles about lives lost to opiates. West Virginia and Kentucky may be the epicenter of the plague, but no town in the U. S. has escaped the scourge.  About 75,000 people died of an opiate overdose in the past year. We also, all too often, are horrified to read about yet another mass shooting, many of them involving a shooter with untreated mental illness.  And for every life lost, an entire family suffers.

Congress appears to have come to the realization that the IMD exclusion is preventing the funding of care for people trying to overcome their SUD, as well as those with a SMI.  So people who cannot afford inpatient care try to deal with their issues using outpatient services. There is legislation in the works that may, at least temporarily, allow Medicaid funds to pay for up to a month of in-patient treatment. The legislation is incomplete, however, as it does not take into account how many people with SUD are also suffering from a severe mental illness. Both conditions need inpatient medical care, using verified treatment methods and holding the treatment facility accountable for statistically positive results.

I speak out whatever chance I get about the need for better treatment of both SUD and SMI. (I’m becoming a master at acronyms!) All kidding aside, I am reminded of the parable of the Good Samaritan, who found a man from another town beaten and robbed in a ditch. He took the man home and nursed him back to health. Growing up, we were taught that we must care for people who suffer, help them back on their feet. I guess the lessons sunk in.

One of my poems in Aftermath includes the lines:

Even then you and I sensed this could happen only once. Our lives/ 

would now have a before and after.

Caring for my brother was an experience like that. Losing my nephew was an experience like that.  Sometimes we go through a difficult time in our life and we are changed. In my case, I became – quite by accident – an advocate. 

***

Katherine Flannery Dering is a writer and mental health advocate and serves on the communications committee of the Shattering the Silence Coalition, (http://www.nationalshatteringsilencecoalition.org) an organization that seeks to highlight the need for better care for the millions of people suffering from serious brain disorders. She believes words can effect change, and she hopes her words help in this effort. She also blogs on behalf of sensible controls over illegal opiates and results-proven rehab programs.

Her chapbook, Aftermath, began during the weeks following the death of her teenage nephew from a drug overdose. During the ensuing months, two other close friends died, as well. This collection is, in part, reflections on the question, How do I make sense of my life in the face of death’s inevitability? How do any of us?  She empathizes with other victims of the country’s opioid epidemic and encourages family survivors to speak out for better, evidenced-based treatment. These poems delve into the sorrow of losing someone to drug addiction and asks the question, where do I go from here?

Ms. Dering has lived in Westchester county, New York for over thirty years. Currently, she serves on the executive committee of the Katonah Poetry Series, is on the board of the local chapter of the League of Women Voters, and is an active member of the Pound Ridge Authors Society.  She blogs at www.deringkatherine.wordpress.com.  Visit her website at www.katherineflannerydering.com.  Her chapbook, Aftermath, is available at  https://www.finishinglinepress.com/product/aftermath-by-katherine-flannery-dering/   and at Amazon. Her memoir, Shot in the Head, A Sister’s Memoir, a Brother’s Struggle is available at Amazon.

Solstice, 7 AM

 

A goldfinch,
plump in morning chill,
perches on a tomato cage
still two feet taller
than the seedling it
will shelter till September.
I’m ready now, she seems to say
to celebrate this long day
and those to follow.

She flits to a high branch
of a tall cedar tree,
the perch—so slender it
bobs under her tiny weight—
a speck of yellow bouncing
in a shaft of morning sun,
then disappears into the lightening sky.

Where do birds go,
When they disappear like that?
My life!
Where do I go from here?

 

Palm Sunday at the Cloisters

In the Merode room, the Virgin Mary
kneels in voluminous red robes.
She’s reading, still unaware
of Gabriels’s news. Nearby, Jesus
rides a donkey through the late
Gothic Hall. Hail, King of the Jews.

Against a wall, three kings
hold out their royal offerings.
There’s a happy Mary and baby or two,
a huge tapestry from Burgos, and St.
Michael vanquishes a hideous devil.
Sun streams in through high windows.

In the Cuxa cloister, yellow daffodils
and blue hyacinths burst into bloom
in newly warmed soil, sheltered
from late winter’s cold winds
in this medieval square of earth.
Near the walkway, a potted orange tree,
its leaves a deep waxy green, preens.

And in the Fuentidueña chapel,
the high notes of counter tenors
soar as a choir sings
Stabat mater dolorosa
Juxta crucem lacrimosa

Annunciation, nativity,
Madonna and child, king triumphant,
Pietà. How fast it goes!
Just when we were rejoicing,
Oh, my poor sweet boy, Mary cries.

Last Dream

Outside the window a breeze swirls.
My brother stirs in his sleep
A dream hangs from his lips.

He is sane in this one.
His lungs burst with hope,
Shoulders broad and strong.

A breeze rustles the trees,
Mohicans stroll along the Hudson.
A nurse paddles her way down the hall.

I fish a tissue from the bedside,
Wipe the spittle from his dreaming lips,
Pluck a crumb from the sheets.

I fiddle in my hard little chair,
Stroke my brother’s hand.
Paul’s lungs succumb.

A tree branch rustles outside the window.
I slip through the shadowy hallway
and out into the rainy spring evening.

 

Today, October 6, 2016 is both national poetry day and Day 3 of mental illness awareness week.  So I am offering a poem from my book about caring for my brother Paul, who suffered from schizophrenia for many years and then developed lung cancer.  Like many schizophrenia victims, Paul suffered from persistent delusions–one of them having something to do with either being a Mohican Indian or being scalped by one. His last weeks, in a caring nursing home, were difficult, yet peaceful.

Read more here

Eulogy for an Outdoorsman

Three Songs of John*

I.
Where leaves and breezes meet, he sleeps,
disciple of oaks and maples, dappled sunlight,
worshiper of rushing streams, trout leaping for a fly.
A guru appears and beckons him toward the sun.
Two horses draw a carriage laden with hay.
The barn is warm and sweet smelling,
The beige horse nickers her curiosity.
A weaver looks up from her loom, dreams made visible.
She is a seeker of God.
He is a seeker of God.
The moon shines on his closed eyelids.
Tell me, mystics, he asks. How do I grasp this vision?

II.
A canopy of dreams sways overhead.
He counts off the beads of a rosary.
Oh God, I am here, he says.
He is radiant in the gleam of light off the river.
A wave is both movement and water.*
Neither and both.
Man and God.
He seeks the sorrowless land, free from
the mansion of known data.
Ah! The song is pure crystal.
Now, Lord, now! I am with you.
We have all come here and are not here.
A swan paddles by, leaving an ever-widening wake.
Thank you, dear heart, he cries.
He is filled with joy. Tears cover his face.
I love you, he whispers. I am set free.

III.
You have slept for a million years.
Now you cross the river drunk with fresh air.
Look! A salmon struggles upstream.
Hidden in the brush, a robin spies
with one eye its wormy sustenance.
The black squirrel scolds and chatters.
No longer husband or father, you drift.
The stag stands and welcomes you.
The boatman hurries you onto the raft.
This is who you are, he tells you.
You laugh till tears come.
You are home.

*****************

*(after the Songs of Kabir)

An old friend lay dying of pancreatic cancer. He slept a morphine aided sleep most of the day, and when he awoke talked of old days hunting and fishing, and of seeing horse-drawn carriages near his barn that no one else could see.
John had a rough and tumble childhood growing up in a working class section of Yonkers, New York, but developed a love for the outdoors when a family friend introduced him to hunting and fishing in the Catskills.  After high school, he took off to attend college in West Virginia and never returned to the East Coast except for a few rare visits. He made his life in the corner of the world where Pennsylvania and West Virginia meet, enjoying the beauty of that landscape. That idyll was broken several years ago when hydrofracking came to the mountains; their noise, smells and lights disrupting the pace and beauty of his hideaway.  But John stayed, living in the retirement house he’d built on land he’d purchased decades before. Eventually, both he and his wife became mortally ill – she with a rare neurological disorder similar to ALS, he with pancreatic cancer.  Sharon struggles on; John’s struggle is over.

*When we heard from John’s daughter Autumn that he was coming to the end of this life, I’d been reading the Songs of Kabir, poems by a fifteenth Century Sufi poet. He posed, over and over again, mysteries like the wave, meditating on the simultaneous oneness and diversity of our world. I found myself imagining what John’s thoughts might wander to as he lay there on his sun porch in his hospital bed, gazing out from time to time through its panorama window at the land he loved. This is the poem I sent to her.

Our friend passed away two days ago.  Rest in peace, John.

 

Two Poems

Visiting
– for Carolyn

I’ve come for coffee,
a visit with the other grandma,
who needs some company.

I think we’ll chat
for an hour or two.
She knows she’s dying.

Cannulas hiss. Pulse ox
we watch. She nods
and gives a thumbs up sign.

I’m OK for now, she mouths,
then coughs from the effort.
Morning passes into afternoon.

We talk of respirators and
ministers. I call her daughters
Thank you, she mouths again.

Our grandson plays
quietly in the next room.
Rain pelts deck furniture.

Here in the den old friends
wait, hold hands, think of
childhoods and parents

long gone, siblings,
husbands and children
we’ll leave behind.

[Death waits just outside.]

 

 

Doric Loop

I.

It’s a simple casket, its wood polished to a high luster, the lid edged by a pleasing curve. Something simple; only needed for a couple of days.

Casket: 1. a small case or chest, as for jewels or other valuables. And what could be more valuable than this boy, this almost man, this never to be a man? 2. a coffin, possibly an alteration of the old French, cassette. An endless loop? Is this an endless loop of foolish choices and bad judgment leading to inevitable tragedy?

Not a cask: (a barrel, a cylindrical container that holds liquids.) Nor a casque, so famous for Poe’s The Casque of Amontillado, and poor, vain Fortunato, left chained to a moldy brick wall behind an archway, deep beneath the river. (Fortuna: Spanish for fate, the inevitable, nothing to do with fortunate, meaning lucky.) In ancient Greece the three fates, Clotho, Lachesis and Atropos were thought to control human destiny. I’ve met them in the Sunday crossword every now and then.

A casket. A tisket a tasket – a green and yellow one would surely stun this assembly, a bizarre mix of family and my nephew’s druggie friends – black-clad boys with ear plugs and tattoos on their necks and a girlfriend/baby mama with the obligatory nose ring, a spray of red roses tattooed across her chest and black latticework along her arms.

The classic curve of the wood, the inverse of the fluted columns on the simplest of Classic Greek styles. Is this an ogee curve? Another crossword puzzle word.

II.

An old man told me once about the worst funeral he had ever attended. It was across the river in Haverstraw, back in 19 and 36, he said, a very cold winter in these parts. As cold as this one? As he spoke, I pictured Depression era men in overalls carrying a casket like this one across a snowy field on a cold, blustery day like today. The cemetery was on a steep hillside looking out over the Hudson, and when one pallbearer lost his footing, the coffin dropped and slid – to the horror of the assembled family and friends and well-wishers of one sort or another – and took off down the steep incline like an Olympic luge, till it rammed a tall monument erected some years before in honor of the town’s former mayor and sprang open, flinging the corpse in a perfect 10 of an arc to land in a seated position a little further downhill, leaning against the headstone of a Mrs. Mary Ellen Hitchens, may she rest in peace, before it (the corpse, not the headstone) fell over on its side.

Women screamed. A flock of crows flew up into the winter sky cawing excitedly, a black cloud circling and blocking the sun. Friends moved to shield the horrified family from the ghastly sight. Funeral employees and pall bearers hurried to recapture the elusive body. With each step as they ran down the hillside, their feet broke through a thin crust of ice into softer snow below, which proceeded to fill their black dress shoes with clumps of icy crystals that melted into frigid pools. Embarrassing wet spots appeared on their pants where they fell. It was some time before they could get the deceased positioned back in the box and the box placed into its resting place.

I don’t really believe this story, though the old man promised it was true. But then, again, Santa Claus was supposed to be true. God was supposed to be true. I’d like to think that the spirit, at least, flew through the air, to meet with dear ones again on God’s golden shore, as the Soggy Bottom Boys sang. Though how our spirit selves will recognize each other without bodies, still trapped down there under the snow, I don’t know.

III.

There’ll be no snow for this casket. My nephew will find a warm welcome tomorrow at the local crematorium, a small brick affair, absent of any decorative moldings, smooth Doric style or otherwise.

This afternoon, aunts, sisters and friends of the boy stutter out sad stories. The boy’s uncle, my brother, plays his guitar and an aunt holds her hymnal and sings, “In the sweet bye and bye. We shall meet in the sweet bye and bye.” And my sister sits and wrings one wad of tissues after another till this crowd of weeping mothers and fathers and friends finally goes home.

The lovely curve of the lid is almost hidden under the spray of roses and carnations, all white for the boy, white for his youth, white for… I don’t know what for.

And we scoop my sister up and get her some food at Cappola’s down the block, in a brick building that has been partially stuccoed to resemble a Tuscan villa, with stone Italian-style arches, like those where poor Fortunato found his eternal rest.

*

These two poems first appeared in the Manhattanville Review in January, 2016.

Katherine Flannery Dering holds an MFA in Creative Writing from Manhattanville College. Her memoir, Shot in the Head, a Sister’s Memoir a Brother’s Struggle, was published in 2014. Her poetry and essays have appeared in Inkwell Magazine, The Bedford Record Review, Northwoods Press, Sensations Magazine, Pandaloon Press, Poetry Motel, Pink Elephant Magazine, Six Hens, and River, River. A narrative non-fiction piece, which later became a chapter of Shot in the Head, was included in Stories from the Couch, an anthology of essays about coping with mental illness. She is a member of the advisory board of The Katonah Poetry Series.

What motivates her to create:
Most often a sudden inspiration while I am driving requires that I pull over to the side of the road and jot it down. A phrase, an urgent new expression of a belief or attitude toward the world, a moment of sorrow, a truth. Scraps of scribbled paper beg life as a poem or essay. A series of inspirations becomes a book. I love beautiful sentences, a carefully crafted images, and I strive for the aha! moments when writing something I never knew before.

My Shadow

My shadow wears a leather mini-skirt
over a black body stocking, which clings
to her slender body. As she moves, her hair
wafts sandalwood incense, and dangling
earrings tinkle, like wind chimes
in a soft, sing-song breeze.

My shadow is an unrepentant beatnik,
who snaps her fingers instead of clapping,
and spouts Kerouac at chic Village nightspots.
She’s an actress and painter, spending months
at a time in her ancient stone cottage on the
isle of Ibiza, where she whiles away
her Mediterranean days counting
turns of windmills
stray clouds at the horizon
and lovers at her doorstep.

My shadow and I have been one, for
a few cherished weeks at a time.
Years ago, outside Valencia, we spent days
watching citrus trees grow,
listening to melancholy guitar, and
zipping down dirt roads and cobbled
streets on a Vespa with Pepe.
We lit bonfires on the beach one night,
then hid from the Guardia Civil.
And at the saint’s day fiesta, Pepe gave
me the bouquet, as he entered the plaza
for the novillada. We danced
the Pase Doble until dawn.

Lately, my shadow’s been urging me
to rejoin the world tour, but the me
in business suit and sensible pumps demurs.
She insists, though, that I save travel brochures,
and is planning a journey for us to watch
the sun set over Macchu Pichu.
From there, we’ll head to the Galapagos,
and on the back of the giant sea turtle,
Urashima Taro, we’ll be whisked away
to its crystal palace under the sea
and count the seconds of eternity.