People with “diabulimia” manipulate their insulin to lose weight, often with dangerous consequences.
Mario Nazuoni / Reuters
At age 15, Sara Pastor discovered that she could use her diabetes to control her weight. All she had to do was stop taking her insulin.
“The first day it ever happened, it was Halloween. I ate some candy and forgot to take insulin,” recalled Pastor, now 22 and a student at the University of California, Berkeley. “I got on the scale the next morning and had lost weight.”
She put two and two together. Since childhood, she had managed her diabetes by meticulously dosing herself with insulin and almost always avoiding sweets—and now, it seemed that if she broke those rules, the pounds would come off.
“A couple of months later I went to 7-Eleven to get a candy bar and doughnut and said I won’t take my insulin just this one time. I will get this out of my system,” she says. But one time led to a few more sugar binges, and then more frequent ones. Within a few months, Pastor was struggling with “diabulimia,” the lay term for the dual diagnosis of Type 1 diabetes and an eating disorder.
Some studies report that people with Type 1 diabetes, an incurable condition in which the body produces little or no insulin, are twice as likely as non-diabetics to develop an eating disorder, often by underdosing their insulin. This insulin restriction, in turn, leads to further health problems—one study shows they are three times more likely to die of diabetes-related complications than those who follow their medication regimen.
Treating diabetes patients with eating disorders comes with unique, complex challenges, says Marcia Meier, a diabetes nurse educator at the Melrose Center in Minneapolis, one of only a few facilities in the country that specializes in diabulimia.
“With diabetes there is a focus on numbers: What is your blood sugar? … How many carbohydrates have you consumed?” she explains. But “with eating disorders, people need to learn to let go of the obsession with numbers. So there is a conflict in treatment approaches.”
Over time, diabulimia can have potentially devastating medical consequences, says Shanti Serdy, an endocrinologist at the Joslin Diabetes Center in Boston. “Unfortunately I have seen patients develop complications that normally would happen much later, if at all, such as loss of vision and kidney failure,” she says.
“With diabetes, there’s a focus on numbers. With eating disorders, people need to learn to let go of the numbers.”
The condition can also quickly turn fatal: One effect of insulin deprivation is that the body can no longer use glucose for energy, and so burns fat as an alternative source. This results in the buildup of a toxic substance called ketones, which can rapidly lead to severe dehydration, coma, and sometimes death.
Over time, Serdy, who works in tandem with a psychologist to treat diabulimia patients, has learned the warning signs. “The first clue to me that patients are purposely restricting insulin is an extremely high A1c,” a test measuring average blood-sugar levels over the past few months, “despite that they have a clear understanding of diabetes self-management,” she said. A healthy A1c level is around 6.5; Serdy has seen diabulimia patients with levels as high as 17. Mood swings and exhaustion are also common, as is avoidance—often, patients will cancel appointments or “forget” to bring diabetes records to their doctors’ visits to avoid being caught.
Pastor managed to hide what she was doing from her parents, and even her doctor, for months. It was easy to do, as she had always insisted on giving herself injections and monitoring her sugar on her own. When her sugar was higher than normal, her health providers assumed she was simply rebelling against the strict diet that her disease demanded by sneaking a few treats.
After a couple of months, she was crashing, too tired some days to stand up or talk. She recalls lying on the couch, hearing her parents try to wake her and whispering they were afraid she was slipping into a coma. Finally, she told them what she had been doing, kicking off five long years of therapy and repeated hospitalization.
Often, Type 1 diabetics’ risk of developing an eating disorder has to do with the messages they receive about their disease early in life, says Dawn Taylor, a psychologist at the Melrose Center. After a child is diagnosed, families typically change how they eat and establish new rules around food—an important part of managing the disease, but also often a tricky line to walk.
“A message gets into [the young diabetic’s] belief system that desserts are bad,” Taylor said, and “a lot of them say their doctors tell them they will gain weight on insulin, which they interpret as insulin equals fat.” This can lead to an all-or-nothing mentality—and then, when patients do allow themselves certain foods, they can feel out of control. That’s often when the deliberate insulin restriction begins, though many fail to recognize their behavior as a serious problem.
“You hear denial. They say, ‘I don’t have to be talked into eating, and I’m not making myself vomit.’ So they think they don’t have an eating disorder,” says Meier.
“You hear denial. They think they don’t have an eating disorder.”
The patients that Serty has seen turn around have worked with specialized health-care teams and had their families involved in recovery. The latter is especially important, she says, since some of the beliefs leading to eating-disorder behaviors in diabetics begin with the actions and words of well-meaning parents. Relapse rates are high—recent research found a 53-percent chance of recurrence within six years of remission—but Meier says that with an ongoing support system, patients are more likely to eventually go back to testing their sugar regularly, eating normally, and taking their insulin the way it’s prescribed.
After struggling for years, Pastor entered a residential treatment program for diabulimia at the Center for Hope of the Sierras in Reno, Nevada, at age 21. Someone sat with her through every meal, watched her take her insulin, and woke her twice a night to monitor her sugar. But she also learned to look out for herself.
“They taught me skills like intuitive eating, where you listen to your body cues and eat based on them. If your body says ‘I want a cookie now,’ you eat it. Then you check in with yourself and pay attention to how full and satisfied you are,” she said. “I am no longer scared of food or obsessed with it—when you feel like you can have a burger whenever you want, you don’t want it as much.” And after finishing treatment in March of this year, she’s gone back to diligently taking her insulin.
In 1962, six year old John Tuohy, his two brothers and two sisters entered Connecticut’s foster care system and were promptly split apart. Over the next ten years, John would live in more than ten foster homes, group homes and state schools, from his native Waterbury to Ansonia, New Haven, West Haven, Deep River and Hartford. In the end, a decade later, the state returned him to the same home and the same parents they had taken him from. As tragic as is funny compelling story will make you cry and laugh as you journey with this child to overcome the obstacles of the foster care system and find his dreams.
ABOUT THE AUTHOR
John William Tuohy is a writer who lives in Washington DC. He holds an MFA in writing from Lindenwood University.
He is the author of No Time to Say Goodbye: Memoirs of a Life in Foster Care and Short Stories from a Small Town. He is also the author of numerous non-fiction on the history of organized crime including the ground break biography of bootlegger Roger Tuohy "When Capone's Mob Murdered Touhy" and "Guns and Glamour: A History of Organized Crime in Chicago."
His non-fiction crime short stories have appeared in The New Criminologist, American Mafia and other publications. John won the City of Chicago's Celtic Playfest for his work The Hannigan's of Beverly, and his short story fiction work, Karma Finds Franny Glass, appeared in AdmitTwo Magazine in October of 2008.
His play, Cyberdate.Com, was chosen for a public performance at the Actors Chapel in Manhattan in February of 2007 as part of the groups Reading Series for New York project. In June of 2008, the play won the Virginia Theater of The First Amendment Award for best new play.
“I am here because I worked too hard and too long not to be here. But although I told the university that I would walk across the stage to take my diploma, I won’t. At age fifty-seven, I’m too damned old, and I’d look ridiculous in this crowd. From where I’m standing in the back of the hall, I can see that I am at least two decades older than most of the parents of these kids in their black caps and gowns.
So I’ll graduate with this class, but I won’t walk across the stage and collect my diploma with them; I’ll have the school send it to my house. I only want to hear my name called. I’ll imagine what the rest would have been like. When you’ve had a life like mine, you learn to do that, to imagine the good things.
The ceremony is about to begin. It’s a warm June day and a hallway of glass doors leading to the parking lot are open, the dignitaries march onto the stage, a janitor slams the doors shut, one after the other.
That banging sound.
It’s Christmas Day 1961 and three Waterbury cops are throwing their bulk against our sorely overmatched front door. They are wearing their long woolen blue coats and white gloves and they swear at the cold.
They’ve finally come for us, in the dead of night, to take us away, just as our mother said they would.”
“Otherwise, there were no long goodbyes or emotional scenes. That isn’t part of foster care. You just leave and you just die a little bit. Just a little bit because a little bit more of you understands that this is the way it’s going to be. And you grow hard around the edges, just a little bit. Not in some big way, but just a little bit because you have to, because if you don’t it only hurts worse the next time and a little bit more of you will die. And you don’t want that because you know that if enough little bits of you die enough times, a part of you leaves. Do you know what I mean? You’re still there, but a part of you leaves until you stand on the sidelines of life, simply watching, like a ghost that everyone can see and no one is bothered by. You become the saddest thing there is: a child of God who has given .”
“As I said, you die a little bit in foster care, but I spose we all die a little bit in our daily lives, no matter what path God has chosen for us. But there is always a balance to that sadness; there’s always a balance. You only have to look for it. And if you look for it, you’ll see it. I saw it in a well-meaning nun who wanted to share the joy of her life’s work with us. I saw it in an old man in a garden who shared the beauty of the soil and the joy he took in art, and I saw it in the simple decency and kindness of an underpaid nurse’s aide. Yeah. Great things rain on us. The magnificence of life’s affirmations are all around us, every day, everywhere. They usually go unnoticed because they seldom arrive with the drama and heartbreak of those hundreds of negative things that drain our souls. But yeah, it’s there, the good stuff, the stuff worth living for. You only have to look for it and when you see it, carry it around right there at the of your heart so it’s always there when you need it. And you’ll need it a lot, because life is hard.”
“As sad as I so often was, and I was often overwhelmed with sadness, I never admitted it, and I don’t recall ever having said aloud that I was sad. I tried not to think about it, about all the sad things, because I had this feeling that if I started to think about it, that was all I would ever think of again. I often had a nightmare of falling into a deep dark well that I could never climb out of. But then there was the other part of me that honestly believed I wasn’t sad at all, and I had little compassion for those who dwelled in sadness. Strange how that works. You would think that it would be the other way around.”
“In late October of 1962, it was our turn to go. Miss Hanrahan appeared in her state Ford Rambler, which, by that point, seemed more like a hearse than a nice lady’s car. Our belongings were packed in a brown bags. The ladies in the kitchen, familiar with our love of food, made us twelve fried-fish sandwiches each large enough to feed eight grown men and wrapped them in tinfoil for the ride ahead of us. Miss Louisa, drenched with tears, walked us to the car and before she let go of my hand she said, “When you a big, grown man, you come back and see Miss Louisa, you hear?”
“But,” I said, “you won’t know who I am. I’ll be big.”
“No, child,” she said as she gave me her last hug, “you always know forever the peoples you love. They with you forever. They don’t never leave you.”
She was right, of course. Those we love never leave us because we carry them with us in our hearts and a piece of us is within them. They change with us and they grow old with us and with time, they are a part of us, and thank God for that.”
“One day at the library I found a stack of record albums. I was hoping I’d find ta Beatles album, but it was all classical music so I reached for the first name I knew, Beethoven. I checked it out his Sixth Symphony and walked home. I didn’t own a record player and I don’t know why I took it out. I had Beethoven’s Sixth Symphony but nothing to play it on.”
“The next day, when I came home from the library, there was a small, used red record player in my room. I found my mother in the kitchen and spotted a bandage taped to her arm.
“Ma,” I asked. “Where did you get the money for the record player?”
“I had it saved,” she lied.
My father lived well, had a large house and an expensive imported car, wanted for little, and gave nothing. My mother lived on welfare in a slum and sold her blood to the Red Cross to get me a record player.
“Education is everything, Johnny,” she said, as she headed for the refrigerator to get me food. “You get smart like regular people and you don’t have to live like this no more.”
She and I were not hugging types, but I put my hand on her shoulder as she washed the dishes with her back to me and she said, in best Brooklynese, “So go and enjoy, already.” My father always said I was my mother’s son and I was proud of that. On her good days, she was a good and noble thing to be a part of.
That evening, I plugged in the red record player and placed it by the window. My mother and I took the kitchen chairs out to the porch and listened to Beethoven’s Sixth Symphony from beginning to end, as we watched the oil-stained waters of the Mad River roll by. It was a good night, another good night, one of many that have blessed my life.”
“The next day I was driven to New York City to take the physical. It was one of the strangest things I’d ever seen. Several hundred young men, maybe even a thousand, in their skivvies, walking around an enormous room, all of us lost, dazed, and confused.
Some of these guys had dodged the draft and were there under the watchful eyes of dozens of federal marshals lined against one of the walls. After eight hours of being poked, prodded, stuck, and poked again, I was given a large red envelope. I had been rejected. I had the respiratory problems of an old man, high blood pressure, partial loss of hearing, very bad teeth, very flat, very wide feet and I tested positive for tuberculosis.
“Frankly,” the doctor said, “I don’t know how the hell you’re even standing ,” and that was when the sergeant told me that if they bottled everything that was wrong with me “we could take over the world without a shot.”
“I had decided that I wanted to earn my living as a writer and the only place in Waterbury where they paid you for writing was at the local newspaper. My opportunity came when the paper had an opening for a night janitor. Opportunities are easy to miss, because they don’t always show in their best clothes. Sometimes opportunities look like beggars in rags. After an eight-hour shift in the shop tossing thirty-pound crates I hustled to the newspaper building and cleaned toilets, with a vague plan that it would somehow lead to a reporter’s .”
“One Friday afternoon at the close of the working day the idiot bosses in their fucking ties and suit coats came and handed out pink slips to every other person on the floor. I got one. They were firing us. Then they turned and, without a word, went back to their offices. Corporate pricks.”
“There is a sense of danger in leaving what you know, even if what you know isn’t much. These mill towns with their narrow lanes and often narrow minds were all I really knew and I feared that if I left it behind, I would lose it and not find anything to replace it. The other reason I didn’t want to go was because I wanted to be the kind of person who stays, who builds a stable and predictable life. But I wasn’t one of the people, nor would I ever be.
I had a vision for my life. It wasn’t clear, but it was beautiful and involved leaving my history and my poverty behind me. I wasn’t happy about who I was or where I was, but I didn’t worry about it. It didn’t define me. We’re always in the making. God always has us on his anvil, melting, bending and shaping us for another purpose.
It was time to change, to find a new purpose.”
“I was tired of fighting the windstorm I was tossed into, and instead I would let go and ride with the winds of change. How bad could it be, compared to the life I knew? I was living life as if it were a rehearsal for the real thing. Another beginning might be rough at first, but any place worth getting to is going to have some problems. I wanted the good life, the life well lived, and you can’t buy that or marry into it. It’s there to be found, and it can be taken by those who want it and have the resolve to make it happen for themselves.”
“Imagine being beaten every day for something you didn’t do and yet, when it’s over, you keep on smiling. That’s what every day of Donald’s life was like. His death was a small death. No one mourned his passing; they merely agreed it was for the best that he be forgotten as quickly as possible, since his was a life misspent.”
“Then there are all of those children, the ones who aren’t resilient. The ones who slowly, quietly die. I think the difference is that the kids who bounce back learn to bear a little bit more than they thought they could, and they soon understand that the secret to surviving foster care is to accept finite disappointments while never losing infinite hope. I think that was how Donald survived as long as he did, by never losing his faith in the wish that tomorrow would be better. But as time went by, day after day, the tomorrows never got better; they got worse, and he simply gave . In the way he saw the world, pain was inevitable, but no one ever explained to him that suffering was optional.”
“In foster care it’s easier to measure what you’ve lost over what you have gained, because it there aren’t many gains in that life and you are a prisoner to someone else’s plans for your life.”
“I developed an interest in major league baseball and the 1960s were, as far as I’m concerned (with a nod to the Babe Ruth era of the 1920s), the Golden Age of Baseball. Like most people in the valley, I was a diehard Yankees fan and, in a pinch, a Mets fan. They were New York teams, and most New Englanders rooted for the Boston Red Sox, but our end of Connecticut was geographically and culturally closer to New York than Boston, and that’s where our loyalties went.
And what was not to love? The Yankees ruled the earth in those days. The great Roger Maris set one Major League record after another and even he was almost always one hit shy of Mickey Mantle, God on High of the Green Diamond.”
“For the first time in my life, I was eating well and from plates—glass plates, no less, not out of the frying pan because somebody lost all the plates in the last move. Now when we ate, we sat at a fine round oak table in sturdy chairs that matched. No one rushed through the meal or argued over who got the biggest portion, and we ate three times a day.”
“The single greatest influence in our lives was the church. The Catholic Church in the 1960s differs from what it is today, especially in the Naugatuck Valley, in those days an overwhelmingly conservative Catholic place.
I was part of what might have been the last generation of American Catholic children who completely and unquestioningly accepted the sernatural as real. Miracles happened. Virgin birth and transubstantiation made perfect sense. Mere humans did in fact, become saints. There was a Holy Ghost. Guardian angels walked beside us and our patron saints really did put in a good word for us every now and then.”
“Henry read it and said, “A story has to have three things. They are a beginning, a middle and an end. They don’t have to be in that order. You can start a story at the end or end it in the middle. There are no rules on that except where you, the author, decide to put all three parts. Your story has a beginning and an end. But it’s good. Go put in a middle and bring it back to me.”
I went away encouraged, rewrote the story and returned it to him two days later. Again he looked it over and said, “It’s a good story but it lacks a bullet-between-the-eyes opening. Your stories should always have a knock-’em-dead opening.” Then, looking with exaggerated suspicion around the crime-prone denizens of the room with an exaggerated suspicion, he said loudly, “I don’t mean that literally.”
“A few days after I began my short story, I returned to his desk and handed him my dates. He pushed his wire-rimmed reading glasses way on his nose and focused on the two pages. “Okay, you got a beginning; you got yourself a middle and an end. You got a wing-dinger opening line. But you don’t have an establishing paragraph. Do you know what that is?”
He didn’t wait for me to answer.
“It’s kinda like an outdated road map for the reader,” he said. “It gives the reader a general idea of where you’re taking him, but doesn’t tell him exactly how you intend to get there, which is all he needs to know.”
“I don’t know’,” he said. “Those three words from a willing soul are the start of a grand and magnificent voyage.” And with that he began a discourse that lasted for several weeks, covering scene-setting, establishing conflict, plot twists, and first- and third-person narration. [ I learned in these rapid-fire mini-dissertations that like most literature lovers I would come to know, Henry was a book snob. He assumed that if a current author was popular and widely enjoyed, then he or she had no merit. He made a few exceptions, such as Kurt Vonnegut, although that was mostly because Vonnegut lived on Cape Cod and so he probably had some merits as a human being, if not as a writer.
I think that the way Henry saw it was that he was not being a snob. In fact I would venture that in his view of things, snobbery had nothing to do with it. Rather, it was a matter of standards. It was bout quality in the author’s craftsmanship.”
“The foundries were vast, dark castles built for efficiency, not comfort. Even in the mild New England summers, when the warm air combined with the stagnant heat from the machines or open flames in the huge melting rooms where the iron was cast, the effects were overwhelming. The heat came in unrelenting waves and sucked the soul from your body. In the winter, the enormous factories were impossible to heat and frigid New England air reigned sreme in the long halls.
The work was difficult, noisy, mind-numbing, sometimes dangerous and highly regulated. Bathroom and lunch breaks were scheduled to the second. There was no place to make a private phone call. Company guards, dressed in drab uniforms straight out of a James Cagney prison film [those films were in black and white, notoriously tough, weren’t there to guard company property. They were there to keep an eye on us.
No one entered or the left the building without punching in or out on a clock, because the doors were locked and opened electronically from the main office.”
“So he sings,” he continued as if Denny had said nothing. “His solo mio, that with her in his life he is rich because she is so beautiful that she makes the sun more beautiful, you understand?” And at that he dropped the hoe, closed his eyes and spread out his arms wide and with the fading sun shining on his handsome face he sang:
Che bella cosa è na jurnata 'e sole
n'aria serena doppo na tempesta!
Pe' ll'aria fresca pare già na festa
Che bella cosa e' na jurnata 'e sole
Ma n'atu sole,
cchiù bello, oi ne'
'O sole mio
sta 'nfronte a te!
'O sole, 'o sole mio
sta 'nfronte a te!
sta 'nfronte a te!
It looked like fun. We dropped our tools and joined him, belting out something that sounded remarkably like Napolitano. We sang as loud as we could, holding on to each note as long as we could before we ran out of breath, and then we sang again, occasionally dropping to one knee, holding our hands over our hearts with exaggerated looks of deep pain. Although we made the words , we sang with the deepest passion, with the best that we had, with all of our hearts, and that made us artists, great artists, for in that song, we had made all that art is: the creation of something from nothing, fashioned with all of the soul, born from joy.
And as that beautiful summer sun set over Waterbury, the Brass City, the City of Churches, our voices floated above the wonderful aromas of the garden, across the red sky and joined the spirits in eternity.”
“It didn’t last long. Not many good things in a foster kid’s life last long. One day, Maura was gone. Her few things were packed in paper bags and a tearful Miss Louisa carried her out to Miss Hanrahan’s black state-owned Ford sedan with the state emblem on the door, and she was gone. The state had found a foster home that would take a little girl but couldn’t take the rest of us. There were no long goodbyes. She was just gone. I remember having an enormous sense of helplessness when they took her. Maura didn’t know where she were going or long she would be there. She was just gone”
“After another second had passed I added, “But you’re pretty, pretty,” and as soon as I said it I thought, “Pretty, pretty? John, you’re an idiot.” But she squeezed my hand and when I looked at her I saw her entire lovely face was aglow with a wonderful smile, the kind of smile you get when you have won something.
“Why do you rub your fingers together all the time?” she asked me, and I felt the breath leave my body and gasped for air. She had seen me do my crazy finger thing, my affliction. I clenched my teeth while I searched for a long, exaggerated lie to tell her about why I did what I did. I didn’t want to be the crazy kid with tics, I wanted to be James Bond 007, so slick ice avoided me.
“It’s okay,” she said. “I bite my nails, see?” and she showed me the backs of her hands. Her finger nails were painted a color I later learned was puce.
“My Dad, he blinks all the time, he doesn’t know why either,” she continued. She looked her feet and said, “I shouldn’t have asked you that. I’m really nervous and I say stid things when I’m nervous. I’m a girl and this is my first date, and for girls this really is a very big deal.”
I understood completely. I was so nervous I couldn’t feel my toes, so I started moving them and to make sure they were still there.
“It’s all right,” I said. “I don’t know why I do that with my fingers; it’s a thing I do.”
“Well, you’re really cute when you do it,” she said.
“I know,” I said, and I don’t know why I said it, but I did.”
“So began my love affair with books. Years later, as a college student, I remember having a choice between a few slices of pizza that would have held me over for a day or a copy of On the Road. I bought the book. I would have forgotten what the pizza tasted like, but I still remember Kerouac.
The world was mine for the reading. I traveled with my books. I was there on a tramp steamer in the North Atlantic with the Hardy Boys, piecing together an unsolvable crime. I rode into the Valley of Death with the six hundred and I stood at the graves of Uncas and Cora and listened to the mournful song of the Lenni Linape. Although I braved a frozen death at Valley Forge and felt the spin of a hundred bullets at Shiloh, I was never afraid. I was there as much as you are where you are, right this second. I smelled the gunsmoke and tasted the frost. And it was good to be there. No one could harm me there. No one could punch me, slap me, call me stid, or pretend I wasn’t in the room. The other kids raced through books so they could get the completion stamp on their library card. I didn’t care about that stid completion stamp. I didn’t want to race through books. I wanted books to walk slowly through me, stop, and touch my brain and my memory. If a book couldn’t do that, it probably wasn’t a very good book. Besides, it isn’t how much you read, it’s what you read.
What I learned from books, from young Ben Franklin’s anger at his brother to Anne Frank’s longing for the way her life used to be, was that I wasn’t alone in my pain. All that caused me such anguish affected others, too, and that connected me to them and that connected me to my books. I loved everything about books. I loved that odd sensation of turning the final page, realizing the story had ended, and feeling that I was saying a last goodbye to a new friend.”
“I had developed a very complicated and little-understood disorder called misophonia, which means “hatred of sound.” Certain sounds act as triggers that turn me from a Teddy bear into an agitated grizzly bear. People with misophonia are annoyed, sometimes to the point of rage, by ordinary sounds such as people eating, breathing, sniffing, or coughing, certain consonants, or repetitive sounds. Those triggers, and there are dozens of them, set off anxiety and avoidant behaviors.
What is a mild irritation for most people -- the person who keeps sniffling, a buzzing fly in a closed room—those are major irritants to people with misophonia because we have virtually no ability to ignore those sounds, and life can be a near constant bombardment of noises that bother us. I figured out that the best way to cope was to avoid the triggers. So I turned off the television at certain sounds and avoided loud people. All of these things gave me a reputation as a high-strung, moody and difficult child. I knew my overreactions weren’t normal. My playmates knew it”
“Sometimes in the midst of our darkest moments it’s easy to forget that it’s to us to turn on the light, but that’s what I did. I switched on the light, the light of cognizance.”
“I don’t know what I would have done if they had hugged me. I probably would have frozen in place, become stiff. It took most of my life to overcome my distaste for physical contact and not to stiffen when I was touched, or flinch, twitch, fidget, and eventually figure out how to move away. I learned to accept being hugged by my children when they were infants. Their joy at seeing me enter a room was real and filled with true love and affection and it showed in their embraces. Like a convert, when I learned the joy and comfort of being hugged by and hugging those I loved, I became a regular practitioner.”
“Most people don’t understand how mighty the power of touch is, how mighty a kind word can be, how important a listening ear is, or how giving an honest compliment can move the child who has not known those things, only watched them from afar. As insignificant as they can be, they have the power to change a life.”
“They were no better than common thieves. They stole our childhood. But even with that, I was heartbroken that I would not know the Wozniaks anymore, the only people who came close to being parents to me. I would be conscious of their absence for the rest of my life. I needed them. You know, if you think about it, we all need each other. But even with all of the evidence against the Wozniaks, I had conflicted emotions about them, then and now. They were the closest I had to a real family and real parents.
But now I was bankrt of any feelings at all towards them at all.
I felt then, and feel now, a great sense of loss. I felt as if I were burying them. when I never really had them to lose in the first place. Disillusioned is probably a better word. In fact the very definition of disillusionment is a sense of loss for something you never had. When you are disillusioned and disappointed enough times, you shoping. That’s what happens to many foster kids. We become loners, not because we enjoy the solitude, but because we let people into our lives and they disappoint us. So we close and travel alone. Even in a crowd, we’re alone.
Because I survived, I was one of the lucky ones. Why is it so hard to articulate love, yet so easy to express disappointment?”
“My first and lasting impression of the Connecticut River Valley is its serene beauty, especially in the autumn months. Deep River was a near picture-perfect New England village. When I arrived there, the town was a typical working-class place, nothing like the trendy per-income enclave it became. The town center had a cluster of shops, a movie theater open only on weekends, several white-steepled churches (none of them Catholic), the town hall, and a Victorian library. It was small, even by Ansonia standards.”
“While I may not have been a bastion of good mental health, many of these boys were on their way to becoming crazier than they already were. Most couldn’t relate to other people socially at all, because they only dealt inappropriately with other people or didn’t respond to overtures of friendship or even engage in basic conversations.
Some became too familiar with you too fast, following their new, latest friend everywhere, including the showers, insisting on giving you items that were dear to them and sharing everything else. They also had the awful habit of touching other people, putting their hands on you as a sign of affection or friendship, and for people like myself, with my affliction and disdain for being touched unless I wanted to be touched, these guys were a nightmare. It was often difficult to get word in edgewise with these kids, and when I did, they interrted me—not in some obnoxious way, but because they wanted to be included in every single aspect of everything you did.
The other ones, the stone-cold silent ones, reacted with deep suspicion toward even the slightest attempt to befriend them or the smallest show of kindness. If you touched some of these children, even accidentally, they would warn you to back away. They didn’t care what others thought of them or anything else, and almost all their talk concerned punching and hurting and maiming.
I noticed that most of these kids, the ones who were truly damaged, were eventually filtered out of St. John’s to who knows where. Institutions have a way of protecting themselves from future problems.”
“Jesus,” I prayed silently, “please fix it so that my turn to read won’t come around.”
And then the nun called my name, but before I stood I thought, “I’ll bet you think this is funny, huh, Jesus?”
I stood and stared at the sentence assigned to me and believed that, through some miracle, I would suddenly be able to read it and not be humiliated. I stood there and stared at it until the children started giggling and snickering and Sister told me to sit.”
“My affliction decided to join us, forcing me to push my toes on the floor as though I were trying to eject myself from the chair. I prayed she didn’t notice what the affliction was making me do. I half expected to be eaten alive or murdered and buried out back in the school yard.
“I’m not afraid of you, ya know,” I said, although I was terrified of her. The words hurt her, but that wasn’t my intent. She turned her face and looked out the window into North Cliff Street. She knew what her face and twisted body looked like, and she probably knew what the kids said about her. It was probably an open wound for her and I had just tossed salt into it.
I was instantly ashamed of what I done and tried to correct myself. I didn’t mean to be hurtful, because I knew what it was like to be ridiculed for something that was beyond one’s control, such as my affliction, and how it made me afraid to touch the chalk because the feel of chalk to people like me is overwhelming. If I had to write on the blackboard, I held the chalk with the cuff of my shirt and the class laughed.
“You look good in a nun’s suit,” I said. It was a stid thing to say, but I meant well by it. She looked at the black robe as if she were seeing it for the first time.”
“Jews were a frequent topic of conversation with all of the Wozniaks, which was surprising, since none of them had any contact at all with anything even remotely Jewish.
While watching television, Walter would point out who was and who was not Jewish and Helen’s frequent comment when watching the television news was, “And won’t the Jews be happy about that!” To bargain with a merchant for a lower price was to “Jew him ,” and that sort of thing.
Walter’s mother and father were far worse. They despised the Jews and blamed them for everything from the start of World War I to the Kennedy assassination to the rising price of beef.
I didn’t pay much heed to any of this. It wasn’t my problem, and if I were to think through all the ethnic, racial and religious barbs the Wozniaks threw out in the course of a week, I’d think about nothing else.
After being told about a part of my mother’s heritage, the Wozniaks began their verbal and cultural assault against us. As odd as it sounds, they might not always have intended to be mean.”
“Explaining the Jews in a Catholic school when you’re Irish is like having to explain your country’s foreign policy while on a vacation in France. You don’t know what you’re talking about and no matter what you say, they’re not going to like it anyway.”
“You could read the story of his entire life on his face in one glance.”
“As interesting as that was, it didn’t inspire me. What did was that here was a Jew who was tough with his fists, a Jew who fought back. The only Jews I had ever heard of surrendered or were beaten by the Romans, the Egyptians, or the Nazis. You name it, it seemed like everyone on earth at some point had taken their turn slapping the Jews around. But not Benny Leonard. I figured you’d have to kill Benny Leonard before he surrendered.”
“One afternoon Walter brought Izzy to the house for lunch and, pointing to me, he said to Izzy, “He’s one of your tribe.”
Dobkins lifted his head to look at me and after a few seconds said, “I don’t see it.”
“The mother’s a Jew,” Walter answered, as if he were describing the breeding of a mongrel dog.
“Then you are a Jew,” Izzy said, and sort of blessed me with his salami sandwich.”
“Sometimes a man must stand for what is right and sometimes you must simply walk away and suffer the babblings of weak-minded fools or try to change their minds. It’s like teachin’ a pig to sing. It is a waste of your time and it annoys the pig.”
“Father, I can’t take this,” I said.
“Because you’re a priest, Father.”
“And my money’s no good because of it? What are you? A member of the Masonic Lodge?”
“Naw, Father,” I said. “I just feel guilty taking money from you.”
“Well, you’re Irish and Jewish. You have to feel guilty over somethin’, don’t ya? Take the money and be happy ye have it.”
― John William Tuohy, No time to say goodbye: memoirs of a life n foster care
“I caddied—more accurately, I drove the golf cart—for Father O’Leary and his friends throughout most of the summer of that year. I was a good caddie because I saw nothing when they passed the bottle of whiskey and turned a deaf ear to yet another colorful reinvention of the words “motherless son of a bitch from hell” when the golf ball betrayed them.”
“Weeks turned into months and a year passed, but I didn’t miss my parents. I missed the memory of them. I assumed that part of my life was over. I didn’t understand that I was required to have an attachment to them, to these people I barely knew. Rather, it was my understanding that I was sposed to switch my attachment to my foster parents. So I acted on that notion and no one corrected me, so I assumed that what I was doing was good and healthy.”
“I felt empty a lot and I sometimes had a sense—and I know this sounds strange—that I really had no existence as my own person, that I could disappear and no one would notice or remember that I had ever existed. It is a terrifying thing to live with. I kept myself busy to avoid that feeling, because somehow being busy made me feel less empty.”
“Denny thought our parents needed a combination of material goods and temperamental changes before he could return home.
“If Dad buys Ma a car, then she’ll love him, and they’ll get back together and she won’t be all crazy anymore,” he said. For years he held out the possibility that those things would happen and all would change. “If we had more things, like stoves and cars,” he told me at night in our bedroom, “and Ma wasn’t like she is, we could go home.”
“Because we were raised in a bigoted and hate-filled home, we simply assumed that calling someone a “cheap Jew” or saying someone “Jewed him ” were perfectly acceptable ways to communicate. Or at least we did until the day came when I called one of the cousins, a Neanderthal DeRosa boy, “a little Jew,” and he told me he wasn’t the Jew, that I was the Jew, and he even got Helen and Nana to confirm it for him.
It came as a shock to me to find out we were a part of this obviously terrible tribe of skinflint, trouble-making, double-dealing, shrewdly smart desert people. When Denny found out, he was crestfallen because he had assumed that being Jewish meant, according to what his former foster family the Skodiens had taught him, a life behind a desk crunching numbers. “And I hate math,” he said, shaking his head.
So here we were, accused Jews living in a hotbed of anti-Semitism. Not a good situation. Walter’s father was the worst. Learning about our few drops of Jewish blood seemed to ignite a special, long-held hatred in him. He became vile over nothing, finding any excuse to deride the Jews in front of us until Helen made him stop. We didn’t know what to make of it, except to write it off as another case of Wozniak-inspired insanity, but as young as we were, we could tell that at some point in his life he had crossed swords with a Jew someplace and came out on the losing end and we were going to pay for it. But because we really didn’t feel ourselves to be Jews, it didn’t sink in that he intended to hurt us with his crazy tirades. As I said, it’s hard to insult somebody when they don’t understand the insult, and it’s equally hard to insult them when they out and out refuse to be insulted.
Word got around quickly.”
“I hit him for every single thing that was wrong in my life and kicked him in a fierce fury of madness as he sobbed and covered his face and screamed. I hit him because Walter hit me and I hit him because I hated my life and I hit him because I just wanted to go home and I hit him because I didn’t know where home was.”
“I also told him about the dramatic, vivid verbal picture of God that the nuns drew for us—an enormous, slightly dangerous and very touchy guy with white hair and a long white beard.
“It’s all the talk of feeble minds,” he whispered to me in confidence. “Those nuns know as much about prayer as they do about sex. Listen to me, now. God is everywhere and alive in everything, while them nuns figured God is as good as dead, a recluse in a permanently bad mood. Well, I refuse to believe that to my God, my maker and creator, my life is little more than a dice game.” He stopped and turned and looked at me and said, “Never believe that a life full of sin puts you on a direct route to hell. Even if you only know a little bit about God, you learn pretty quick that he’s big on U-turns, dead stops and starting over again.”
As each day passes and my memories of Father O’Leary and Sister Emmarentia fade, and I can no longer recall their faces or the sounds of their voices as clearly as I could a decade ago, what remains, clear and uncluttered, are the lessons I took from them.”
“Eventually, many years later, I came to see him the way everyone else saw him—a nice guy who, despite all the damage he did to us, wasn’t a bad man, not inherently bad, anyway. He just wasn’t very bright, and was in over his head on almost every level of life. He was capable of only so much and not a drop more, and because he seemed so harmless and lost, people not only liked him, they protected him.
My mother, despite her poverty, left the opposite impression. She left no doubt that she was psychologically tough and mentally sharp, and because of that the Wozniaks disliked her.
And that was another difference between my mother and father. My father was a whiner, a complainer, a perpetually unhappy man unable to comprehend the simple fact that sometimes life is unfair. My mother never complained, and yet her poverty-stricken life was miserable. She never carried on about the early death of her raging alcoholic mother, or the father who raped her, or of a diet dictated by the restrictions of food stamps.”
To read the first 12 chapters of this book, visit it's BlogSpot @ amemoirofalifeinfostercare.blogspot.com/
Do you think, because I am poor, obscure, plain and little, I am soulless and heartless? You think wrong! - I have as much soul as you, - and full as much heart! ― Charlotte Brontë, Jane Eyre
I am here because I worked too hard and too long not to be here. But although I told the university that I would walk across the stage to take my diploma, I won't. At age fifty-seven, I'm too damned old, and I'd look ridiculous in this crowd. From where I'm standing in the back of the hall, I can see that I am at least two decades older than most of the parents of these kids in their black caps and gowns.
So I'll graduate with this class, but I won't walk across the stage and collect my diploma with them; I'll have the school send it to my house. I only want to hear my name called. I'll imagine what the rest would have been like. When you've had a life like mine, you learn to do that, to imagine the good things.
The ceremony is about to begin. It's a warm June day and a hallway of glass doors leading to the parking lot are open, the dignitaries march onto the stage, a janitor slams the doors shut, one after the other.
That banging sound.
It's Christmas Day 1961 and three Waterbury cops are throwing their bulk against our sorely overmatched front door. They are wearing their long woolen blue coats and white gloves and they swear at the cold.
They've finally come for us, in the dead of night, to take us away, just as our mother said they would.
"They'll come and get you kids," she screamed at us, "and put youse all in an orphanage where you'll get the beatin's youse deserve, and there won't be no food either."
That's why we're terrified, that's why we don't open the door and that's how I remember that night. I was six years old then, one month away from my seventh birthday. My older brother, the perpetually-worried, white-haired Paulie, was ten. He is my half-brother, actually, although I have never thought of him that way. He was simply my brother. My youngest brother, Denny, was six; Maura, the baby, was four; and Bridget, our auburn-haired leader, my half -sister, was twelve.
We didn't know where our mother was. The welfare check, and thank God for it, had arrived, so maybe she was at a gin mill downtown spending it all, as she had done a few times before.
Maybe she'd met yet another guy, another barfly, who wouldn't be able to remember our names because his beer-soaked brain can't remember anything. We are thankful that he'll disappear after the money runs out or the social worker lady comes around and tells him he has to leave because the welfare won't pay for him as well as for us. It snowed that day and after the snow had finished falling, the temperature dropped and the winds started.
"Maybe she went to Brooklyn," Paulie said, as we walked through the snow to the Salvation Army offices one that afternoon before the cops came for us.
"She didn't go back to New York," Bridget snapped. "She probably just--"
"She always says she gonna leave and go back home to Brooklyn," I interrupted.
"Yeah," Denny chirped, mostly because he was determined to be taken as our equal in all things, including this conversation.
We walked along in silence for a second, kicking the freshly fallen snow from our paths, and then Paulie added what we were all thinking: "Maybe they put her back in Saint Mary's."
No one answered him. Instead, we fell into our own thoughts, recalling how, several times in the past, when too much of life came at our mother at once, she broke down and lay in bed for weeks in a dark room, not speaking and barely eating. It was a frightening and disturbing thing to watch.
"It don't matter," Bridget snapped again, more out of exhaustion than anything else. She was always cranky. The weight of taking care of us, and of being old well before her time, strained her. "It don't matter," she mumbled.
It didn't matter that night either, that awful night, when the cops were at the door and she wasn't there. We hadn't seen our mother for two days, and after that night, we wouldn't see her for another two years.
When we returned home that day, the sun had gone down and it was dark inside the house because we hadn't paid the light bill. We never paid the bills, so the lights were almost always off and there was no heat because we didn't pay that bill either. And now we needed the heat. We needed the heat more than we needed the lights.
The cold winter winds pushed up at us from the Atlantic Ocean and down on us from frigid Canada and battered our part of northwestern Connecticut, shoving freezing drifts of snow against the paper-thin walls of our ramshackle house and covering our windows in a thick veneer of silver-colored ice.
The house was built around 1910 by the factories to house immigrant workers mostly brought in from southern Italy. These mill houses weren't built to last. They had no basements; only four windows, all in the front; and paper-thin walls. Most of the construction was done with plywood and tarpaper. The interiors were long and narrow and dark.
Bridget turned the gas oven on to keep us warm. "Youse go get the big mattress and bring it in here by the stove," she commanded us. Denny, Paulie, and I went to the bed that was in the cramped living room and wrestled the stained and dark mattress, with some effort, into the kitchen. Bridget covered Maura in as many shirts as she could find, in a vain effort to stop the chills that racked her tiny and frail body and caused her to shake.
We took great pains to position the hulking mattress in exactly the right spot by the stove and then slid, fully dressed, under a pile of dirty sheets, coats, and drapes that was our blanket. We squeezed close to fend off the cold, the baby in the middle and the older kids at the ends.
"Move over, ya yutz, ya," Paulie would say to Denny and me because half of his butt was hanging out onto the cold linoleum floor. We could toss insults in Yiddish. We learned them from our mother, whose father was a Jew and who grew up in a Jewish neighborhood in New York.
I assumed that those words we learned were standard American English, in wide and constant use across our great land. It wasn't until I was in my mid-twenties and moved from the Naugatuck Valley and Connecticut that I came to understand that most Americans would never utter a sentence like, "You and your fakakta plans".
We also spoke with the Waterbury aversion to the sound of the letter "T," replacing it with the letter "D," meaning that "them, there, those, and these" were pronounced "dem, dere, dose, and dese." We were also practitioners of "youse," the northern working-class equivalent to "you-all," as in "Are youse leaving or are youse staying?"
"Move in, ya yutz, ya," Paulie said again with a laugh, but we didn't move because the only place to move was to push Bridget off the mattress, which we were not about to do because Bridget packed a wallop that could probably put a grown man down. Then Paulie pushed us, and at the other end of the mattress, Bridget pushed back with a laugh, and an exaggerated, rear-ends pushing war for control of the mattress broke out.
From the Inside Flap
By jackiehon October 13, 2015
After reading about John's deeply personal and painful past, I just wanted to hug the child within him......and hug all the children who were thrown into the state's foster system....it is an amazing read.......
By Jane Pogodaon October 9, 2015
I truly enjoyed reading his memoir. I also grew up in Ansonia and had no idea conditions such as these existed. The saving grace is knowing the author made it out and survived the system. Just knowing he was able to have a family of his own made me happy. I attended the same grammar school and was happy that his experience there was not negative. I had a wonderful experience in that school. I wish that I could have been there for him when he was at the school since we were there at probably at the same time.
By Sueon September 27, 2015
Hi - just finished your novel "No time to say goodbye" - what a powerful read!!! - I bought it for my 90 year old mom who is an avid reader and lived in the valley all her life-she loved it also along with my sister- we are all born and raised in the valley- i.e. Derby and Ansonia
By David A. Wrighton September 7, 2015
I enjoyed this book. I grew up in Ansonia CT and went to the Assumption School. Also reconized all the places he was talking about and some of the families.
By Robert G Manleyon September 7, 2015
This is a wonderfully written book. It is heart wrenchingly sad at times and the next minute hilariously funny. I attribute that to the intelligence and wit of the author who combines the humor and pathos of his Irish catholic background and horrendous "foster kid" experience. He captures each character perfectly and the reader can easily visualize the individuals the author has to deal with on daily basis. Having lived part of my life in the parochial school system and having lived as a child in the same neighborhood as the author, I was vividly brought back to my childhood .Most importantly, it shows the strength of the soul and how just a little compassion can be so important to a lost child.
ByLNAon July 9, 2015
John Tuohy writes with compelling honesty, and warmth. I grew up in Ansonia, CT myself, so it makes it even more real. He brings me immediately back there with his narrative, while he wounds my soul, as I realize I had no idea of the suffering of some of the children around me. His story is a must read, of courage and great spirit in the face of impoverishment, sorrow, and adult neglect. I could go on and on, but just get the book. If you're like me, you'll soon be reading it out loud to any person in the room who will listen. Many can suffer and overcome as they go through it, but few can find the words that take us through the story. John is a gifted writer to be able to do that.
ByBarbara Pietruszkaon June 29, 2015
I am from Connecticut so I was very familiar with many locations described in the book especially Ansonia where I lived. I totally enjoyed the book and would like to know more about the author. I recommend the book to everyone
ByJoanne B.on June 28, 2015
What an emotional rollercoaster. I laughed. I cried. Once you start reading it's hard to stop. I was torn between wanting to gulp it up and read over and over each quote that started the chapter. I couldn't help but feel part of the Tuohy clan. I wanted to scream in their defense. It's truly hard to believe the challenges that foster children face. I can only pray that this story may touch even one person facing this life. It's an inspiring read. That will linger long after you finish it. This is a wonderfully written memoir that immediately pulls you in to the lives of the Tuohy family.
ByDr. Wm. Anthony Connolly
This incredible memoir, No Time to Say Goodbye, tells of entertaining angels, dancing with devils, and of the abandoned children many viewed simply as raining manna from some lesser god.
The young and unfortunate lives of the Tuohy bruins—sometimes Irish, sometimes Jewish, often Catholic, rambunctious, but all imbued with Lion’s hearts—told here with brutal honesty leavened with humor and laudable introspective forgiveness. The memoir will have you falling to your knees thanking that benevolent Irish cop in the sky, your lucky stars, or hugging the oxygen out of your own kids the fate foisted upon Johnny and his siblings does not and did not befall your own brood. John William Tuohy, a nationally-recognized authority on organized crime and Irish levity, is your trusted guide through the weeds the decades of neglect ensnared he and his brothers and sisters, all suffering for the impersonal and often mercenary taint of the foster care system. Theirs, and Tuohy’s, story is not at all figures of speech as this review might suggest, but all too real and all too sad, and maddening. I wanted to scream. I wanted to get into a time machine, go back and adopt every last one of them. I was angry. I was captivated. The requisite damning verities of foster care are all here, regretfully, but what sets this story above others is its beating heart, even a bruised and broken one, still willing to forgive and understand, and continue to aid its walking wounded. I cannot recommend this book enough.
ByPaul Dayon June 15, 2015
Great reading. Life in foster care told from a very rare point of view.
ByJackie Malkeson June 5, 2015
This book is definitely a must for social workers working with children specifically. This is an excellent memoir which identifies the trails of foster children in the 1960s in the United States. The memoir captures stories of joy as well as nail biting terror, as the family is at times torn apart but finds each other later and finds solace in the experiences of one another. The stories capture the love siblings have for one another as well as the protection they have for one another in even the worst of circumstances. On the flip side, one of the most touching stories to me was when a Nun at the school helped him to read-- truly an example of how a positive person really helped to shape the author in times when circumstances at home were challenging and treacherous. I found the book to be a page turner and at times show how even in the hardest of circumstances there was a need to live and survive and make the best of any moment. The memoir is eye-opening and helped to shed light and make me feel proud of the volunteer work I take part in with disadvantaged children. Riveting....Must read....memory lane on steroids....Catholic school banter, blue color towns...Lawrence Welk on Sundays night's.
Byeileenon June 4, 2015
From ' No time to say Goodbye 'and authors John W. Touhys Gangster novels, his style never waivers...humorous to sadness to candidly realistic situations all his writings leaves the reader in awe......longing for more.
Bykaren pojakeneon June 1, 2015
This book is a must-read for anyone who administers to the foster care program in any state. This is not a "fell through the cracks" life story, but rather a memoir of a life guided by strength and faith and a hard determination to survive. it is heartening to know that the "sewer" that life can become to steal our personal peace can be fought and our peace can be restored, scarred, but restored.
A captivating, shocking, and deeply moving memoir, No Time to Say Goodbye is a true page turner. John shares the story of his childhood, from the struggles of living in poverty to being in the foster care system and simply trying to survive. You will be cheering for him all the way, as he never loses his will to thrive even in the darkest and bleakest of circumstances. This memoir is a very truthful and unapologetic glimpse into the way in which some of our most vulnerable citizens have been treated in the past and are still being treated today. It is truly eye-opening, and hopefully will inspire many people to take action in protection of vulnerable children.
ByKimberlyon May 24, 2015
I found myself in tears while reading this book. John William Tuohy writes quite movingly about the world he grew up in; a world in which I had hoped did not exist within the foster care system. This book is at times funny, raw, compelling, heartbreaking and disturbing. I found myself rooting for John as he tries to escape from an incredibly difficult life. You will too!
ByGeoffrey A. Childson May 20, 2015
I found this book to be a compelling story of life in the Ct foster care system. at times disturbing and at others inspirational ,The author goes into great detail in this gritty memoir of His early life being abandoned into the states system and his subsequent escape from it. Every once in a while a book or even an article in a newspaper comes along that bears witness to an injustice or even something that's just plain wrong. This chronicle of the foster care system is such a book and should be required reading for any aspiring social workers.