My 2016 Thank You List

 

The week after Christmas has become a time of reflection for me, and with recent events fresh in my mind, I would like to end 2016 with a list of ten things I am thankful for.
1.  To Carrie Fisher and Debbie Reynolds, thank you for finding your way back to each other during your time on this earth. You survived times when one or the other behaved badly and still found a way to show each other how much you cared for one another. You are role models for all the mothers and daughters out there.
2.  To Congressman Tim Murphy of Pennsylvania, Congresswoman Eddie Bernice Johnson of Texas, Senator Chris Murphy of Connecticut, and the dozens and dozens of mental health advocates from D.J. Jaffe, to the folks at Treatment Advocacy Center, to Teresa and Anthony and Amanda and Kathy and Laura and Ilene and Joy and G.G. and Jennifer, and the rest of the gang. Thank you for working so hard to pass legislation to improve the lives of people with serious mental illnesses.
3.  To my siblings. Thank you for coming to my house with your enthusiasm and appetites for Thanksgiving and Christmas. Without you, how would I celebrate the holidays?
4.  And thank you for so thoughtfully leaving me so many of the scalloped potatoes. I admit that I DID complain after you took home almost every last shred of Thanksgiving left overs, leaving me only a little stuffing and pumpkin pie, neither of which I could eat because I am gluten and lactose free. Remembering the locust-like activity of that get together, for Christmas I had prepared two vast casseroles of scalloped potatoes, omitting the onions and substituting rice flour and lactose free milk for the wheat flour and cream that the recipe called for.(The Joy of Cooking said to use three pounds of potatoes for every six people. With 22 people expected, I had peeled and sliced ten pounds of them.) About seven pounds were left for my husband and I to enjoy this week. A nice change from chicken and white rice. So thank you.
5.  To my husband and children, thank you for heeding my request for events instead of things for Christmas. I look forward to our dinners and shows in the coming weeks. (See item #1)
6.  And to the dozen or so agents and small press publishers who declined any interest in my latest manuscript, thanks to you, as well. Even to the three or four who didn’t even send a rejection note, I am sure you were just worried about hurting my feelings. I know that the extra time I will now have to mull over what to delete, what to add, and where to simply try to “elevate the prose” will help make it a better book.
7.  To Comedy Central and Jon Stewart. Thank you for giving me the gift of more sleep. Over the previous year I had stayed up too late watching Jon and Larry. Without those old buddies I am going to bed earlier and getting close to seven hours of sleep per night.
8.  To Bosch dishwashers, for making an appliance that actually gets my dishes clean, and makes so little noise I can hardly tell it is on—although, I do wonder if it couldn’t have been possible to do this in less than two hours. Perhaps in the next model?
9.  To my nutritionist, Amy, and whoever invented the FODMAP diet. Thank you for discovering that essentially everything I eat gives me gastro-intestinal distress. If I avoid not just wheat, shellfish and dairy, but also onions, garlic, apples, peaches, baked beans, honey, and a list of about thirty other seemingly random food items, I will feel great. Of course, this leaves little on my OK to eat list—primarily chicken and plain white rice—but there you go.
10. Which brings me to item number 10. To chicken. To all the chickens—and I should probably add rice plants—who have sacrificed and will sacrifice their lives so that I can eat homemade chicken and rice soup (with no onions, garlic, soy, wheat, MSG or high fructose corn syrup) everyday for the rest of my life, thank you. And now on to 2017

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.

The Sisters of Perpetual Determination

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Sunday after Sunday, year after year, our Mother drove the one hour ride from our home White Plains to the Wingdale Psychiatric facility to visit my brother Paul and to prod the staff to take good care of him. Paul, the eighth child of our family of ten children, suffered his first psychotic break at 16 and for the next thirty two years, despite all treatment attempts, he never had more than a few moments of sanity. As our father sunk into a deeper and deeper depression, unwilling to face what had happened to his young pride and joy, Mother just gritted her teeth and did what had to be done. Dad died. Paul got sicker. But sun or snow, rainy or blustery day, Mother drove the two hour round trip and gave Paul his one day per week of almost normalcy. Picnics for sunny summer days, diner or pizza shop on bad days, an occasional excursion to a pool or bowling alley. Mother could recite every gas station, burger joint, antique shop, hardware store, exit, entrance, diner, motel, bank, putting range or ski equipment shop along the 50 mile route.

When Paul was 34, Mother died, very suddenly, of a burst aortic aneurism, and the ten of us “kids” were in shock. We stumbled through funeral preparations, copying what Mother had done for Dad. She had sung in the church choir for years, and her pals did a great job singing at her funeral mass. During the priest’s homily, he spoke repeatedly about what a determined mother she was in not only raising her ten children but also for ensuring that her mentally ill son was properly cared for. After Mother’s burial, the choir and at least 80 other friends and family members gathered at Mother’s house for a funeral luncheon.

At some point that afternoon, four or five of my sisters and I went for a walk around her neighborhood to escape the crowd of mourners who, fueled in part by a large quantity of bourbon and wine, had progressed from munching on catered chicken parmesan and crudités to singing show tunes around her baby grand piano. It was a beautiful, sunny fall day.  A short way down the block, realtors were holding an open house. Since we would have to sell Mother’s house, we decided to check it out. Recalling how the priest at Mother’s Mass had gone on and on about what a determined woman she was, we signed in as a group of nuns looking for a new home and called ourselves the Sisters of Perpetual Determination. It became our family joke. The next year, after I’d settled Mother’s will and distributed everyone’s share, my siblings gave me a plaque inscribed “To the executrix extraordinaire, with thanks, from The Sisters of Perpetual Determination.”

As the months and years went by after Mother’s death, we siblings took up the mantle of trying to look after our brother.  However, this was the age of the deinstitutionalization movement, and despite the lack of a suitable half-way facility to care for him, we were unable to prevent his release from the psychiatric facility. Without constant supervision and tweaking of his medications, he went steadily downhill. His schizophrenia was severe and persistent. He was unable to make it through the maze of “freedoms” he was given, and he cycled in and out of hospitals and group homes. We had always hoped we could keep him safe until some new treatment was discovered that would bring him back to us. But poor diet, constant smoking and general aimlessness caught up with him. Despite our efforts, he died six years ago at the age of 48.  We miss him still.

Current laws, meant to protect people from unjust confinement, now condemn many people with serious mental illness to a shadow life of delusions, confusion, and homelessness, horrible group homes and/or early death. Despite promising advancement in early intervention and new cognitive treatments, many with schizophrenia never really recover.  The care of a family member in this age of almost no long term mental health care puts a tremendous burden on people trying to keep their loved ones off the streets and out of jail.  In consideration of all these caregivers do, my sisters and brothers and I have decided to share our sisterhood name with all the other families of people suffering with serious mental illness.

To the Mothers, Fathers, Sisters and Brothers of Perpetual Determination, we salute you.  We have pledged our support for legislation like HR2646 and vow to fight for improved care for our loved ones.

picture:  to r back row: Pat, Charlotte, Sheila, Paul, Ilene; front row: John, Katherine, Julia, Grace, Monica.

For more information on HR2646 and a letter you can copy and paste and send to your representatives go to www.shotinthehead.com and click on the advocacy page.

To learn more about schizophrenia and what is needed to improve our mental health system go to http://www.paulslegacyproject.org

To order my book, please go to Amazon.com.

Christmas Past and Present

all I want for christmas is hr2646-2About five months after my family moved to Switzerland in 1959, Mother went into labor early, with what we thought would be her eighth child. After three weeks of complete bed rest, the surprise twin babies – eighth and ninth – were born Christmas Day.

How auspicious!  Paul was so beautiful, with his blond curls and long, lanky body!  Even his fingers were long and elegant.  Ilene, two pounds smaller than Paul, was tiny and had straight dark hair and intense dark eyes set into a little round face.  She looked like the Japanese dolls, friends had sent us from Occupied Japan a few years before.

The twins were baptized a few weeks later in a tiny, Medieval stone church in the nearby town of Versoix, each of them dressed in a piece of the Christening gown my father and the older seven children had been baptized in.  My older sister Sheila and I (first and second of the eventual ten) held them for the service, filling in for the official godparents, who were back in the States.

On Christmas mornings, for all the years that the twins were growing up, the ten of us kids (our tenth – and last – child, Julia, was born two years after the twins) woke before dawn. We waited at the top of the stairs in our pajamas, our dog Charlie whining and whimpering in the excitement, until Mother and Dad went downstairs and turned on the tree lights.  Once they gave us the go ahead, we all rushed down to the living room, big kids looking out for little kids, and opened our presents in a frenzy of ripping paper and squeals and barking and the beeping and clanking of new toys.

Someone put Christmas music on the record player.

O little town of Bethlehem/how still we see thee lie./Above thy deep and dreamless sleep/the silent stars go by.

 … Our one perfect day of the year.

After presents had been opened, we older girls helped Mother fix a big breakfast of bacon and eggs that we ate in the dining room.  The candles on the Advent wreath, changed out from their pink and lavender to red in honor of the day, blazed all morning.  There were too many of us to go to church together, so those who hadn’t been to Midnight Mass drifted off to Mass in twos and threes.

From noon on, Christmas changed over to the twins’ birthday. Following family birthday tradition, Ilene didn’t have to help with dishes or set the table, the usual girl chores.  Both she and Paul got to laze around in the living room and ask other people to bring them a soda or a glass of juice while they played with their new toys or watched some old movie on TV, which they got to choose.  At dinner, while Dad read the gospel from the Christmas Mass, Paul and Ilene got to relight the red candles on the Advent Wreath.  Mother carried in the roast beef with great ceremony and placed it in front of Dad, and the twins got their pick of the roast – they usually chose the ends, valuable mostly because there were only two of them – and they were served first. Our ten sequined, red felt Christmas stockings hung from the dining room fireplace mantle.  Above them, the little brass angels of the Swedish chimes, pushed by the rising heat of little candles, clanged against bells as they swung by.

Dessert was always the same – two layer-cakes in the shape of a Christmas tree, one white, one chocolate, both of them made from Betty Crocker mixes and decorated with green frosting and little globs of red, blue and yellow frosting made to look like Christmas tree ornaments.  After the dinner plates were cleared away, Sheila, Mary Grace or I would go out to the kitchen to light the candles on the cakes.  The twins would squirm and grin kitty-corner from each other at the long table.  When we gave the signal, Johnny or Patrick would turn off the lights and start the singing and we’d deliver the cakes and birthday presents by the light of all the candles.

Fast forward to today

The above is an excerpt from Shot in the Head, A Sister’s Memoir, a Brother’s Struggle, my memoir about my family, and more specifically about taking care of our brother, Paul.

To order the book, please go to Amazon.com.

Little did we know back in 1966 when the five little kids posed for this picture – Charlotte, Monica, Paul, Ilene and Julia – how it would all turn out.  Our beautiful baby Paul grew into a handsome teenager, full of promise…

…until he succumbed to a psychotic episode at age 16. Christmas was never the same again for our family.  Despite frantic efforts to get him psychiatric care, Schizophrenia killed the brother we knew and left in his place a confused, delusional man, who had no more than a few scattered minutes of sanity ever again. And his situation worsened over the years, as most of our psychiatric facilities were closed and fewer and fewer facilities were available for the care of those most seriously ill. 

Our system of care for people with serious mental illnesses in our country is simply not working.  4% of our population suffers from a serious mental illness, and many of them, like my brother Paul, never really recover, even if they stay on medication. Only about one third of people diagnosed with schizophrenia recover, a third cycle in and out, and a third never achieve any appreciable recovery. Many of these are homeless or in jail, due to the lack of appropriate care facilities and supportive housing.

Ilene’s Christmas Birthday Wish

Over the past few years, the families of people like Paul came together and let our congressmen and senators know that we wanted them to end the IMD exclusion, a provision of Medicaid that prohibits providing benefits – i.e. funding – to people being cared for in an “institution of mental disease.” So far, even when HR2646 was passed, and rolled into the 20th Century Cures Act, it not address this issue. But although the provision has still not been repealed, Alex M. Azar, Secretary of Health and Human Services has recently released instructions allowing the States to apply for a waiver to the the provision, which will allow them to care for seriously mentally ill people in the hospital, if that is what their illness requires.  This is a step forward, but not enough. The most seriously ill, like my brother, however, need supportive housing. It is as important a component of their care as their medications. But because of the IMD, long term housing for mentally ill people still cannot include supervisory and medical staff.

A psychiatric nurse who works in a county upstate told me once that they saw the same mentally ill patients cycle onto their ward over and over again. “It’s David again,” they’d say to each other when the call came in that a psychotic man had been brought into the ER. Or Cheryl, or John… They knew what drugs worked the last time, so they’d get him or her stabilized in four or five days, then release them to a taxi with a paper prescription, $25 and one night prepaid in a local motel. They would be back in a month or two.

Hospitalization, stabilization, release, decline,
psychosis, fights, rehospitalization or jail.
No day clinic, no pretense of psychiatric care.
You’re in charge of yourself.
Let someone know if you’re feel bad.

Nothing to do and no supervision.
300 men and women living in one building,
Delusions, mania, confusion, despair.
Somebody crashes, now there’s another
Police car stops. They’re off with my brother.

Hospitalization, stabilization, release, decline,
psychosis, fights, rehospitalization or jail.

To learn more about schizophrenia and what is needed to improve our mental health system go to http://www.paulslegacyproject.org

To learn more about possible supportive housing  options, see my blog with that title on this WordPress address.  Let’s make 2019 the year we help the mentally ill homeless off the street and out of hell-hole “adult homes.”