Maia Madden

Book Author, Journalist, Blogger

Archive for the tag “dementia”

Requiem for My Brother George

George

 

 

 

 

 

 

 

I look out at these gentle French hills,
The silver greens you thought so lovely,
The cloudless blue sky framed by waves of vine,
The dark dense patches of trees
In patterns of repose,
So still this morning,
As you are in your coffin, George,
My beloved brother.

No longer will you see the streams and rivers
That enlivened you, nor feel the sacred space
Where you and sky and water joined,
Where you found peace in a heart
Agitated by ancient loss, a heart
Capable of selfless love
Only for the trees and rivers and oceans
You fought hard to protect.

I see you standing by a Colorado stream,
Fishing rod in hand, casting
As if in prayer,
Casting for joy, casting for freedom,
Casting for the stillness that came
With the roar of water rushing over rocks,
Rocks you collected
Like tokens of eternity.

The trees soothed your soul
As you strode thigh-deep into streams and rivers,
From Russia to Canada,
From New York to California,
And here, in Gironde, where once upon a time,
The grandfather you loved, who loved you as his one true son,
Placed a bamboo pole in your small hand,
And taught you how to fish.

Side by side you stood in silence
On the muddy banks of the Garonne,
Until your pole wobbled and you raised it
In triumph, a small silver fish dangling in the air.
How powerful you must have felt,
How complete, how proud,
When your Papi
Smiled and hugged and praised you.

You never forgot that joy.
It was the one true thing that gave meaning to your life,
That led you and sustained you.
But the rest, oh, the rest, how sad you were,
Beneath those water-green eyes,
Eyes the color of the Garonne
When the sun slants across
Its wide, sullen surface.

That river frightened me,
But not you.
It was as though you had risen from it,
Born from its restless tides,
Sometimes silent, sometimes agitated,
Sometimes as angry as its currents when storms
Ruffled its surface,
Like the surface of your life.

We saw only the surface.
What lay beneath? What depths of sorrow,
What pools of unrequited love
Hiding from the violence of currents
You could not control?
Your eyes, once full of emotion,
Grew dull as your mind dissolved
Into the murky present.

Emptied of your essence, wounded by disease,
You saw only terror,
The terror of reality slipping away,
Thought by broken thought,
The terror of pain and confusion and helplessness,
The terror of memory battered
As if flung into a raging river,
Engulfed by useless anger.

In the end, your eyes saw nothing at all.
They closed, and you slept,
Without pain or desire,
Accepting the abyss until, finally,
Death set you free.
And all that remained were your ravaged bones,
Your skin stretched paper-thin over wasted flesh.
Today, we will burn you.

Once your face was plump
With the excess of your desires,
For food, for drink, for money, for clothes,
For possessions so numerous that you collapsed under the weight,
Lost like a little boy in the rubble of an unkempt life,
With a measureless need for love that no one and nothing could fill,
An emptiness you felt but never understood,
And never tried to heal.

I will remember another you,
The man of rivers and forests,
The lover of beauty in all of its guises,
The young soul who laughed and danced,
Who loved art and music and books,
Who spoke four languages with ease,
The man who cherished cats and children,
The brother who loved me.

You wanted chocolate, always chocolate.
In the end, your sister Vesna fed you piece by piece,
Watching you smile as chocolate melted in your mouth.
Chocolate was the vestige of your senses, the final pleasure,
The last rite offered by someone who loved you,
Because we did love you, my lost, lonely brother.
We will always love you,
Our beloved brother George.

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Living Life in the Moment, Through Chocolate-Tinted Glasses

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February 19th is my brother George’s birthday. I can see him in the group room of his home in France. He is numb, clueless, forever waiting for nothing. His Alzheimer’s disease has made me question the supposed virtue of living in the moment, as George now lives, day after day, instant after instant. Tomorrow is his 64th birthday, and what is his greatest pleasure? Chocolate.

He does not know that on February 18th, his son had a baby boy. George probably doesn’t remember that he has a son. He doesn’t remember me. But he most definitely remembers chocolate.

Every other week or so, my sister, Vesna, goes to visit him in the memory-care home he now lives in, a facility in Southwest France that we were lucky to find given the outrageous cost of homes in the United States. And every time she visits, she brings him chocolate.

George remembers no one and nothing, but his eyes light up and he smiles when Vesna offers him chocolate.  For him, pleasure has narrowed its focus to what he can hear and what he can taste. He loves any kind of music, and he loves chocolate.

You may have indulged in chocolate, maybe on Valentine’s Day, maybe today or every day, savoring its intensity and its gift of subtle satisfaction. After all, very few people dislike chocolate. It dates back to Mesoamerica, but it was Cortez who brought it back to Spain, and it was the Europeans who sweetened it and made it a fashionable drink in the 17th century. The Mayans and Aztecs, on the other hand, thought the cacao bean was sacred, maybe even divine. They used it in many of their rituals of birth, marriage and death.

We use chocolate to make ourselves feel happier. Some say it has great health properties. Researchers at the Neurosciences Institute in San Diego even found that it contains substances that have similar effects on the brain as marijuana. I’m not sure if that’s true, but I do know that chocolate addiction is common in both men and women. A high is a high is a high. And what’s wrong with that?

Because when nothing is left, no memory, no dignity, no independence, no freedom, no nothing, chocolate is still there. Chocolate brings joy to George as nothing else does. Maybe even more than Madonna and Lady Gaga do. Yet the true sadness remains: if he could only remember, he would rejoice that his first grandson was born just a day before his own birthday.

Who knows what similarities the little boy will have with his grandfather. Will he love to fish? Will he have a talent for languages? And who knows if he will ever know his larger family, or who his grandfather or great-grandfather were, or that those connected to him would love a chance to hold him and love him. Because that is what family is about: unconditional love. Who knows if that will ever happen for him?

My sister, Vesna, is a talented painter and a kind, kind person. In her latest portrait of George, she captures the emptiness, the layers of pain, and the simple joy of being alive in the moment despite the terror of nothingness. She captures the little smile he must proffer when he is given chocolate.  No, our brother is no longer the brother we knew. But he is still there, still breathing, still smiling.

 Vesna brings George chocolate, and he smiles. He had a pretty good life, all in all, and we all wish he could still be the person he was. But he can’t.  If he knew he was a grandfather, he would rejoice. Maybe he wouldn’t be the greatest grandfather, but he would love his grandson, just as his grandfathers loved him, just the way he loved and praised his daughter, just the way he loved and praised his estranged son, the son he tried so hard to bond with, yet never could.  George never learned how to show his love, but he did love.

And George always loved chocolate. In his last semi-independent days in Westchester County, New York, I would find chocolate and candies stashed everywhere in his apartment. I never called him on it, even though he has diabetes. After all, doesn’t everyone have the right to one last pleasure, one last addiction?

Maybe the Aztecs were right to view chocolate as a rite of passage, as a communion with eternity, be it life or death. George doesn’t have much life left in him, but chocolate still makes him smile. And that is enough for my sister.  And that is enough for me. But it is so sad that he will never know that he has a grandson, and never be able to rejoice in that milestone of life. That is the curse of Alzheimer’s.

I wish I could be there tomorrow and see the joy in George’s face as he tastes each morsel of bar or candy or cookie on his birthday. I wish I could be there sharing the pleasure with him.  In my depressed moments, I wonder why he is still alive. But in my up phase, I think how grateful I am for my beautiful, compassionate sister and her unconditional love for our brother George, my sister, who can see his essence and his soul while feeding him chocolate. And I must admit, I feel guilty not to be with the brother I love so much, through thick and thin, through ill and crazy, after so many years of trying. The distance is devastating, the guilt, immense.

A few weeks ago, my sister painted her latest picture of our brother George. He is smiling a tiny bit, maybe because she has just brought him chocolate. I can only imagine the big smile he would have if he knew he had a grandson. Even if he remembered it just for a moment.

SNOW, FAITH & CHRISTMAS

ImageThe first memory I have of snow is on Christmas Eve. I am sitting at the window of our Madison, New Jersey, flat, my face pressed against the cold glass as I watch the white flakes descend helter-skelter from the sky.  Outside, a faint street light illuminates their dance, some flakes flying back upwards, others suspended like tiny pillows in the breeze, still others rushing downwards like bombs on a mission. I cannot see where they land, only how they flutter or hesitate or careen in the golden glow. After what feels like an eternity in which time and space no longer exist, I hear my brother’s voice behind me.

“Did you see him?”

“Who?”

“Santa Claus,” George says, only we are speaking in French since we have not yet learned English, so what he says is “Le Père Noël.” Father Christmas.

I stare intently, but all I see are white crystals falling from a dark sky, briefly lit by light, then disappearing to the ground. I want to see Santa Claus.

“I saw him,” he says, pressing his face next to mine. “He’s there. He has a shiny sled and it’s filled with presents. He passes by quickly so you have to stare really hard.”

We are in the living room by the tree, which is decorated with just a few shiny balls and big colored lights. My parents don’t have much money, but they are determined to give their children an American Christmas.

It’s getting late. From the kitchen, I hear our mother calling that it’s time to go to bed or Santa won’t come. He only comes when little children are asleep.

“If you don’t see him,” whispers my brother, “It means you don’t believe. And if you don’t believe, Santa doesn’t come.”

I believe everything my big brother tells me. Our sister is already asleep, and I know Mom will shoo us to bed if we don’t go soon. I squint. I pray. I feel tears filling my eyes. I do believe! So why can’t I see Santa? There must be something wrong with me.

“Keep looking,” George says. “Just stare and stare. I swear he’s out there.”

My brother goes to bed and leaves me by the cold window, staring and staring. I don’t budge. My small heart is brimming with love and faith. I cannot fail to see Santa Claus! If I don’t see him, I will ruin everyone’s Christmas. None of us will get presents! I know if I wait long enough and try hard enough, I will see him. I beg my mother to let me stay up just a little longer.

After a while, all the colors of the rainbow pass through my tear-stained lashes. I strain to keep my eyes open, my tiny hands clasped in prayer. And then, like the most miraculous gift I can imagine, he is there: Le Père Noël. His clothes, his sled, his reindeer are all golden as he flashes above the street lamp, then circles back and dashes across the sky again.  The figures twinkle like stars, tiny on the immense black-and-white canvas of this snowy night. I run to the bedroom and say, “I saw him! George! I saw him!” But George is sound asleep.

Today I am in Westchester, New York, just a few miles from where George lived before I had to take him to a memory-care home in France. Outside my motel this quiet morning, what were at first fat snowflakes are shrinking and flying faster, sticking to the ground as the temperature drops. I haven’t seen a snowfall in quite a while, and I am mesmerized, sitting alone by the window and remembering that long-ago night when I saw Santa Claus, and I believed.

George himself remembers nothing and no one. I imagine him sitting in a chair in the group room with his eyes closed, his head drooping to the side, his mind empty. I long to be by him, to hold his hand, even if he doesn’t know who I am.

And then I remember a snowy day the winter before last, just before Christmas. I had come to take care of him for a week, but when I went up to his apartment, he had disappeared. It was snowing. He had a serious infection in his hand, and no idea how he got it.  The doctors had told me I needed to come because he was forgetting to go in for his antibiotic infusions and they would have no choice but to hospitalize him for his own safety. His car had been impounded, and he was wandering around at all hours, often forgetting where he was going or why. I drove slowly up and down the streets of Mt. Kisco in the dark, looking for him. I went to every CVS and stopped at every little restaurant he liked. No George.

I was about to give up when I glimpsed what looked like a homeless old man trudging through the snow on Kisco Avenue, a black beanie pulled over his ears, big rubber boots on his feet, and white plastic bags clutched in each gloved hand. I stopped and rolled down the window.

 “George? Is that you?” A pair of blank green eyes under snow-covered brows stared back at me. “It’s Maia, your sister.”

“Maia,” he said. “My sister! You didn’t tell me you were coming!” I saw a hint of the old George in his smile. Of course I had told him I was coming, over and over again. But I no longer felt a need to correct him, to try to force him to remember when he really could not.

I took him to Eduardo’s for his favorite Clams Casino and crème brulée. I let him drink wine, even though he wasn’t supposed to. He laughed and flirted with the waitress, happy at least for a little while.

Not even Clams Casino would rouse George today or bring him back to a semi-conscious state. Like a beautiful snowflake briefly illuminated in the cold, cold night, his life flutters downwards in a slow swirl of mistakes made and dreams unfulfilled, sometimes lifted by moments of joy or moments of awe, but destined sooner or later to fall, then melt and disappear. If I squint my eyes really hard through my tears, I feel the little boy he once was standing behind me and whispering in my ear: “If you really believe, you will see him.”  My heart soars with gratitude because I still believe that if I try as hard as I did that night so many years ago, if I have the pure faith and will of a child, the golden light of love and hope will surely flash by me again.  And perhaps I will see George above me in the night sky, sitting next to Father Christmas, waving good-bye.

My Brother’s Keeper

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When Hurricane Sandy was heading toward New York, my first confused thought was, “I have to call my brother!” And then it hit me inside, like a kick in the stomach: my big brother was no longer in Westchester County. He was in an Alzheimer’s home in France, and I had put him there.

For three years, I flew back and forth between San Francisco and New York to try to save first his condominium, then his life, then his independence, then his rented apartment. Finally, defeated by his deterioration and the expense of New York’s memory care homes, I resorted to taking him back to France, just a few miles from where he was born, and leaving him in a place so far from me that now, despite the work, the worry, the responsibilities, the endless paperwork and all the legal battles I fought for him, I am filled with sorrow and regret.

“You did the right thing,” people tell me. Did I? I see him in my mind, wandering the corridors with empty-eyed men and women twenty years older than he is. I see him going outside to the small fenced courtyard to feed the chickens and stare at the familiar vine-covered hills of his childhood. I see him watching French television, restless and agitated whenever someone approaches, as he waits for a phone call or a visit, both so rare, both of which he will forget moments later.

But when I call him, I can see the smile on his face. “Maia, my sister, how are you doing?” he always asks, recognizing my voice instantly. “Are you coming to see me today?” And I lie. Yes, I lie again and again and again. I tell him not to worry, I’ll be seeing him soon, the way I used to. We’ll go out to dinner. We’ll have fun.

In truth, it may be many months or even years before I can afford a trip to France, and by then he may not recognize me at all.

What is the right thing to do? When my ex-sister-in-law alerted me to my brother’s decline, my first thought was, “Oh, he’s just getting more eccentric with age.” But she was persistent, and I finally flew out to find the most appalling scene I could have imagined. My brother, who cherished and refinished antiques, who was passionate about trout fishing and the environment, who spoke – and still speaks –four languages fluently, who had an MBA from Columbia University and managed the investments of rich foreigners, was living in squalor.

He had become a hoarder, unable to manage his money or his daily life, spending every penny he had on expensive meals and things he didn’t need. From the front door I inched my way through mounds of excess stuff, through a kitchen piled with dirty dishes, through a dining room littered with fishing rods and tackle boxes, to the one usable living room chair, where he sat watching grainy images on his vintage television, his beloved tabby cat on his lap, oblivious to just how bad his situation had become.

Upstairs was even worse: closets filled with dozens of expensive suits, slacks, shoes, shirts, and jackets, hundreds of ties, some with the tags still attached, drawers crammed with t-shirts and sweaters, boxes shoved under the beds and dressers, filled with who knew what. No wonder he was sleeping in his chair: a pile of unopened mail covered his bed.

When I started to sort through those envelopes and all the others littering the condo, I found that he owed every major credit card money, that his condo was about to go into foreclosure, that he owed the IRS a fortune in back taxes, and that he had liquidated the line of credit on his home and every savings account he ever had, including all of his retirement accounts. My brother, once well off and successful, was now completely broke and in serious debt. Somehow, I had to help him.

With the help of his forgiving ex-wife, we began cleaning the place, throwing out collections of empty cat food cans, wine bottles, plastic containers, magazines, newspapers, paper napkins – the list is far too long to recount. We filled one trash bag after another and snuck them out at night, so he wouldn’t see us. Otherwise, he would open the bags and look through them for hours, angered if we were getting rid of anything he found valuable, which was everything, from a pebble to a broken shell to a piece of wood he had found on one of his outings. The back of his van was crammed to the ceiling with objects he had taken from the streets or roads or garbage cans, objects he insisted could come in handy some day.

In the middle of one particularly bad night, he woke me up yelling, his face red with rage. He accused me of throwing out his favorite river rock (he had a huge collection!), a rock shaped like a heart. I was sure I had not, but afraid he might turn violent, I went out to the dumpsters in the biting cold, took back that night’s haul, and looked through every last item, finding nothing, as he sat staring at me in anger. The next morning, I found his precious rock in the kitchen.

I went back in November to continue the cleanup with my daughter. One morning we found him screaming outside in his underwear, angry that the squirrels were eating the birdseed he scattered everywhere, against his condo association’s regulations. People were getting into their cars to go to work and staring as I tried to gently steer him back into the house with the promise of eggs and bacon.

I went again in January, and then every other month. The house began to look better while my brother got worse and worse. Every time I returned, he had put new yellow post-its on the refrigerator, on the telephone, on the kitchen cabinets, on appliances he could not remember how to use, on his stereo buttons and his television remote control. I made him a notebook with all of his important numbers written down, but he would misplace it. There might be four post-its with our father’s number right on the phone, yet he would claim he couldn’t find the number. The message machine was always full, mostly with threatening calls from creditors.

Meanwhile, he had no awareness of his condition. He insisted on taking an exam to maintain his broker’s license so he could work again. He failed it repeatedly, always blaming someone or something and vowing he would pass it the next time.

Desperate to find out what was causing his mental decline, I took him from one doctor to the next. He had severe diabetes, high blood pressure, and cirrhosis.  He was ordered to stop drinking, which he ignored, repeating the same story that he never liked to get drunk growing up and had been raised the French way on red wine mixed with water until he was old enough for the real thing. Both of those statements were true. I had never seen him noticeably drunk, but he had obviously become a big drinker. His supply of expensive French wine was running out, so he started buying beer instead.  If I showed disapproval, he would wag his finger, furrow his brow and give me an angry lecture denying he had a problem.

After an exhausting series of tests, including one for mad cow disease, the diagnosis was always dementia. Probable cause: alcohol and uncontrolled diabetes or early onset Alzheimer’s. I got power of attorney, applied for disability, and put his house on the market.

On February 20, 2010, my sister-in-law called me to say that my brother was very ill and had called her to ask what he should do. The day before had been his 60th birthday, and he had drunk a few six-packs of beer outside of the nearby gas station with some guy he barely knew. He was throwing up blood. She called 911 and they took him to the hospital.

Everything was wrong with him, including a bad case of pneumonia. He went into a coma for days and was put on a ventilator. Once again, I was asked to decide whether or not to keep someone alive by artificial means. This time, I did not hesitate to say yes. He had a daughter I loved, and I was not about to give up on him. I was even naïve enough to think that he might regain his mental facilities!

When he came out of his coma, he remembered nothing. And when he finally returned, after escaping from the convalescent facility through a bathroom window, he denied that he had ever been hospitalized.  He had been gone for nearly a month. He had lost weight and seemed much healthier, but his mind was worse than ever.

And so it went. I arranged for Meals on Wheels and help with his utility bills, and he was approved for Social Security Disability payments. My sister-in-law agreed to come once a week, as did a social worker. But no one could control him, really. He would disappear in his van to feed feral cats or wander the country roads or shop and eat and drink in his old haunts with a new account he managed to finagle before I could close it and pay back all the overdraft fees.

Because the real estate market was so weak, it took months to sell his condo, and when it finally sold, at a greatly reduced price, paying back the liens and fees and attorneys left me with just enough for moving and rent and expenses his disability check could not cover. But where could he go?

I wanted to give my brother a chance to live on his own just a little longer.  He was much too young for a nursing home, and Medicaid had turned us down. So I lied again and made a great case that he was diabetic but fine otherwise and signed a lease for a coop apartment in a nearby town, where he could walk everywhere if he lost his driver’s license.  We painted the walls, sanded the floors and filled the place with his beautiful furniture, paintings and rugs. It was on the seventh floor, with a view of trees and sky and the sound of trains rushing by on the nearby rails. He loved it, and quickly forgot about his condo.

Wherever we went, he would pick up papers and garbage as he walked, railing against people who were pigs and had no respect for the environment. At home, he would spend hours cutting off loose threads from his towels or picking lint off the carpets with his fingers. Clearly, obsessive-compulsive behavior was part of his baffling disease.

The last time I took him to New York City, he wandered off in the subway station while I searched for him in a panic, calling out his name like a madwoman. I eventually found him dancing in front of a subway musician. By the time he had picked up all the trash on our way to H&R Block, we were very late. He fell asleep in his chair while the tax preparer was talking.

Every week, he would get into trouble of some kind or other, and I would get calls or e-mails from the building manager and his landlord. He kept parking in the wrong spot, usually the manager’s. He was feeding birds on his balcony. He crushed beer cans on the kitchen floor with his hard heels during the middle of the night. He told an old woman who was bugging him to go fuck herself. He got into a fight with the superintendent. One night he locked himself out of the building and pounded on the doors, yelling for someone to let him in, until someone called the police. His unpredictable behavior and angry outbursts cost him the renewal of his lease, although I did manage to get him a six-month extension by filing a bogus discrimination suit.

Finally, in November of 2011, police arrested him for driving erratically and impounded his car. By the time he told me, it was too late to get the van back, although I tried. I had ignored his doctor’s repeated advice to take away his car keys. How could I do that to my brother? Furious when he realized they had taken his precious van to the dump, he threatened to blow up the police department and set fire to their cars.

In three short years, I watched as my brother morphed into a demented man unable to care for himself. But when had it really started? And why had no one noticed when his eccentricity degenerated into madness? I felt guilty as hell.

April 1st loomed ahead of me, with no solution in sight. After his old cat died, we had gotten him a new one thinking that having the responsibility of a pet would help his mind.  Instead, he left open cans of cat food in every room of the apartment and forgot to change the litter. Already fat, the cat became positively obese.

I hired a wonderful woman named Dora to come in twice a week to clean, wash his clothes and arrange his medications.  They chatted away in Spanish, and she coddled him into taking showers and changing his clothes. Despite her efforts, he now slept fully dressed on top of his bedcovers. .

In March, he was hospitalized again for an infection in his hand that wouldn’t heal. He was forgetting to go for his infusions. Once he was better, the hospital refused to let him leave unless I promised he would have 24-hour care. He would wander away from his room, and the nurses would find him in CVS trying to buy beer. How could I afford 8-hour care, let alone 24-hour car?  So I lied to the social worker, signed a paper and faxed it back, and had Dora take him home.

I arrived a few days later. When I came to pick him up for dinner that first evening, he had disappeared. It was a cold wet spring day. I drove around and around looking for him.  I saw a homeless old man trudging through the slush with a black beanie on his head and big rubber boots on his feet. He was carrying two CVS bags, his eyes focused on the ground. He put the bags down and picked something up. I slowed and stared. It was my brother…

I had to hide my tears as I helped him into the car. He insisted on putting the bags in the trunk. As if I didn’t know they were filled with candy and beer! He had a daily limit on his ATM card, and every day he would walk to the bank to get his “lousy twenty bucks!” He was constantly losing the ATM card, or getting conned out of his money or getting kicked out of stores for stealing, a fact he thought he kept hidden from me.

Seeing my lonely brother bent over in the semi-gloom picking garbage off the sidewalk finally broke me. I gave up hope that I would find an affordable memory care home in Westchester County, which he loved so much. I gave up hope that I would ever be able to rent a place and pay for daily help, let alone have Medicaid help pay for it. I gave up hope that I could do anything more for him than pay his bills. He needed to be in a place where he was safe and cared for.

And so I lied again and bribed my brother with a vacation to France. Then I abandoned him to strangers.

He tells me how he has to clean the dining room after every meal – the people at this hotel eat so messily. How he saves the crumbs to feed his big birds.

“You mean chickens?”

“Yes, yes, chickens. “

He says he misses music and dancing.

“But I bought you a radio and your daughter bought you a CD player just before she left. She said she taught you to use it. “

“Really? I never saw them. I’ll have to look. I’d sure like to hear some Lady Gaga…”

Everyone says that I did the right thing, that I did what I had to do, that he’s healthy now and better off. But I would give anything to have him back!  Just to see him smile. Just to hear him tell the same stories over and over again and laugh out loud. Just to let him feel that someone he knows cares about him.

He may have lost his mind, but to me he is still the brother who wrote to me when I was far away in college, the brother who took my son and my daughter out to dinner every week when they lived in New York City, the brother who sent me a beautiful set of serrated knives with wooden handles for my birthday. The brother I love.

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