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The Quiet Game

A Short Story

By Stephen Leon

Freddy giggled in his car seat as his older brother sang over the song on the radio with silly made-up lyrics. Acting on your butt behavior, turn your back on butt-crack nature, everybody wants to rule the poop.

“Ryan! You’re 12 years old! Stop acting like a 5-year-old!” Freddy, who was 5, laughed even harder as his father tried in vain to get Ryan to stop.

Peter Morgan’s rusting, dirty-gray Honda minivan, which he had bought used after Freddy was born to accommodate the needs of a growing family, rumbled up I-91 as the late-afternoon sun began to set on a cool but not quite wintry Friday in early December.

To Freddy’s delight, Ryan continued his scatalogical rewrite of the Tears for Fears song.

Help me make the most of peeing and of pooping—

“Ryan! Shut up! NOW!”

Both boys were laughing so hard that Ryan could no longer sing. Just to make sure, Peter leaned to his right and pushed the “off” button so hard with his right thumb that it bent backward painfully.

“Son of a bitch!” Peter exclaimed. The boys clearly did not feel his pain, still laughing uproariously.

“OK, that’s it. If you both don’t shut up for the rest of the trip . . .”

Peter paused to consider which of the possible threats in his arsenal might actually produce the desired results. If he warned them that he would turn the car around and go back home to West Hartford, it would upset Freddy, who was excited to see his mother. But it might actually please Ryan, who wasn’t looking forward to spending the weekend with Claire and, especially, her new boyfriend.

The boys’ laughter finally died down to the occasional spasmic chuckle as they caught their breath.

“OK, it’s another 15 minutes till we get off the highway in Northampton. There’s a convenient store near the exit. You can both get a snack there, but first you have to play the Quiet Game for the rest of the trip. If one of you makes a noise, you lose your snack. If you both make noise, you both lose your snack. Deal?”

A pause, then, “Deal.” “OK.” Their father had not previously mentioned that he might buy them a snack before dropping them off with Mom, so this new reward was worth shutting up for. And it was only 15 minutes.

“I’ll count down to when the game starts, and when we pull off the exit ramp, I’ll let you know it’s over. Ready?”

Ryan took three more deep breaths to chase the chuckles away. Freddy was already thinking about whether he wanted chips or candy. “Yup.”

“Five, four, three . . .”

After several minutes of total silence in the car, Peter turned the radio back on, switching to the news on NPR. When the weather report came on, Peter listened with some interest. Ginny was picking him up early Saturday morning to drive to Boston for a day and a half; they had booked a hotel room in Copley Square. Peter had a brief flashback to similar romantic getaways with Claire, when they were younger and more optimistic about their future together, and the clouds had not yet massed over their relationship.

The weather report for their early December weekend in Boston was fine: sunny, unseasonably warm. There was a winter storm brewing in the Rockies; it would cross the plains during the early part of the week and might make the East Coast a couple of days after that, but no sooner.

*  *  *

Looking back, Peter couldn’t pinpoint when it happened. When Claire and Ryan simply stopped talking to each other. The early years of his childhood seemed ordinary enough. An early walker, he didn’t talk until a few months into his second year, though he clearly understood a hundred or more words. In his bath he could pick out the blue turtle or the pink elephant without hesitation. When he did start to talk, he kept his words to a minimum, just enough to make his point. One morning when he was not quite a year and a half, Peter was delighted to see his little toddler pointing to the TV and asking to watch the movie “Babe” simply by repeating the words “sheep” and “pig.”

As he grew, his parents were pleased to see that he liked all of the things they hoped he would: day trips, nature walks, picnics in the park, visits to the children’s museum, and summer vacations at the ocean. In his early years at school, he made friends easily—which is to say, friends came to him. He was quietly popular without ever trying. He never got into fights at school, but his friends did—over him. Peter was surprised to get a call one day from his teacher to see her after school about a fight he had been in. He signed Ryan out, told him to go have fun on the playground, and went to the teacher’s classroom.

It turned out that Ryan hadn’t been in a fight at all. “I don’t know what to do,” Mrs. Bingham said. “If he plays with Lucas and ignores Devon, Devon starts a fight with Lucas. If he plays with Devon and ignores Lucas, Lucas starts a fight with Devon.”

It struck Peter that this was somehow not his or Ryan’s problem.

At around age 5, Ryan began singling out his father for companionship and conversation. They would sit on the porch together after dinner, and Ryan would say things like, “Talk to me about animals,” or “Talk to me about baseball.” Peter would do as he was asked, and Ryan would sit, happily, quietly, listening.

Ryan was not yet unaffectionate with his mother, but he sometimes just didn’t seem that interested in her. And she was beginning to notice.

* * *

When Peter first met Claire in a popular downtown Hartford nightclub, she seemed shy and insecure and under the protective wing of her more outgoing roomate. Linda was large and loud and forward, and as soon as she saw Peter, she made a beeline for the tall, blue-eyed man in his early 30s with shoulder-length black hair that made him look like a rock star. She cornered him for small talk.

While Peter was enduring Linda’s exasperating diatribes about her job, unreliable men and Hartford’s lousy nightlife, he began to notice her companion. Claire’s pale complexion and habit of looking down into her vodka tonic (as if there were something more interesting going on in there than in the club) at first masked her petite good looks. The closer he looked, the more he liked what he saw: a cute, well-proportioned figure, blunt-cut blonde hair, sparkling green eyes, and a shy smile that brought dimples to her slightly freckeld cheeks.

When Linda, desperate to keep Peter’s attention, offered to buy him a drink, he said yes, on one condition: that she would introduce him to her friend.

To Linda’s dismay, Peter and Claire talked for the rest of the evening. They did not go home together; Linda made sure to pack Claire into her car and drive her back to their apartment, carefully locking the doors behind her as if Peter might somehow sneak in and whisk Claire away.

But they exchanged numbers and made a dinner date, then another. Linda made sure Claire no longer felt welcome in their apartment, once even dragging her across the rug because she had violated Linda’s side of ther living room to watch TV. Claire moved into a studio apartment for a few months, then moved in with Peter.

They quickly learned their shared interests: cooking, indie movies, alternative rock (it was years before Claire revealed a taste for country, inherited from her parents), and history: Claire had finished only two years of community college, but was more well-read than most graduates; Peter was working on his history doctorate. And in the blush of their new romance, they sometimes spent long Saturday afternoons in bed together before finally getting dressed and thinking about things like groceries, dinner, or whether any good bands were playing in the local clubs. They felt warm and content in each other’s company.

After a year they began planning the wedding. Around the same time Peter notcied something about Claire that hadn’t registered before: She seemed to have a blue streak that was becoming more and more apparent. When they were sharing a meal or talking about a subject of mutual interest, she seemed engaged and affectionate with him, and their sex was abundant and playful. But every now and then, he noticed, her face would seem to cloud over, her expression go blank. At first he would ask her what was wrong, and she would snap back, “Nothing.” So he learned not to ask.

In time it got worse. What Peter thought at first were bouts of depression began lasting longer, sometimes hours or even a full day, and she took to withdrawing into the spare room with a book. The episodes were accompanied by silence, and sometimes lasted until she went to bed. There was no sex, not even cuddling, on those nights. Then in the morning she was back to normal.

Pregnancy seemed to make her happier, but she still had occasional blank spells. He felt closer to her than he had in a while, so one day he dared to ask if she might consider seeing someone about her depression. To his relief, she did not seem angry at the question.

“I’m not depressed,” she said, matter-of-factly.

“Okay,” he said. “So . . . what happens when you suddenly go silent and look all melancholy? What are you feeling?”

“Nothing,” she replied. “Nothing at all.”

Claire gave birth to a boy, and their lives were consumed with new realities. Peter got hired as a non-tenured history professor, so he had an income, but they still lived frugally in the modest house they had purchased. Then Claire found a job as a receptionist, but the cost of day care and diapers almost seemed to negate the new income. When she and Peter fought about money, she would retreat into her emotional blankness, and he once again stopped asking her about it.

Raising a boy made things right for a while. They both enjoyed playing with him and reading to him and packing him into the car seat for adventures. But as he got older and seemed to prefer Peter’s company to Claire’s, she began taking it out on him.

Although Claire had seemed shy and unsure of herself as a young woman, a hard and stoic edge had begun to reveal itself. Among other things, she did not let slights and insults go by without consequence, as Peter gradually learned over the early years of their marriage. And apparently she had passed that gene on to her son intact. She and Ryan would begin to disagree over something of seemingly little importance, but the fight would quickly escalate into shouts, whereupon he would abruptly turn away from her, head for his bedroom, and slam the door shut.

Peter at first assumed that one or the other would eventually try to apologize and make nice, or at least reestablish the relationship with a silent hug after a few hours, or perhaps the next day. Instead they both stubbornly persisted in the cold war until a few days had gone by and they could begin exchanging small talk (“turkey or ham sandwich?”) without giving up any ground on the old argument.

On his sixth birthday, Ryan infuriated Claire by declining an offer to take him to a movie. He didn’t think much of it, but she was devastated by the rejection. Her only child, barely school age, was so indifferent to her that he wouldn’t even let her take him to the theater.

She withdrew into the spare room for an entire weekend, emerging only to use the bathroom and occasionally get a drink or a yogurt from the fridge. Peter and Ryan ate meals and played cards and watched TV and kicked the soccer ball around together. He enjoyed the weekend, except for the chill he felt every time Claire emerged, her face so pale and blank it looked as though her soul had escaped her body to take a vacation somewhere else.

Peter came home from the university Monday evening to find a lovely candlelight dinner waiting for him. Claire poured him a glass of wine and told him Ryan had been very happy when she told him he could have McDonald’s takeout for supper. He was in his room playing with his Gameboy. They ate and talked pleasantly. They finished a bottle of wine and opened another. About halfway through that bottle, Claire stood up and began unbuttoning her blouse.

She had made a decision, and she knew that the time was right to act.

Nine months and seven days later, Freddy was born. He was a cute, cherub-cheeked baby, and he soon grew into a delightful child who smiled and laughed at almost everything, and adored his older brother. By age 4 he was asking intelligent questions and enjoying the company of his parents and brother equally. Claire made sure they spent a lot of time together, strolling him through the neighborhood frequently, playing with him in the park, taking him to children’s movies.

Claire would sometimes lay on her back on the floor and hold Freddy on top of her, lifting him up in the air and swinging him gently around until she decided to drop him back on her stomach, which would cause him to giggle. Then she would give him a kiss on one of his big round cheeks, and he would smile and wait for the inevitable:

“You’re not ticklish are you?” Freddy would start gigging even before she started tickling his sides and stomach, which sent him into uncontrollable spasms of laughter.

Watching this, Peter hoped their intimacy would somehow make Claire more fulfilled and complete.

But the darkness that had been looming for years seemed to settle on the household for good. Her relationship with Ryan never recovered. And as she spent more and more nights going to sleep on the futon with Freddy, she and Peter became more distant. It first it was just awkward, as if they really didn’t know each other and were desperately searching for things to talk about. Somewhere along the line it turned mean, petty, resentful. Dinner almost always ended with an argument. Freddy would sometimes cry, but he usually waited it out, knowing he’d have Mommy to himself soon. Ryan would retreat to his room and lock the door. Peter just sat in his chair and drank wine. If Ryan came back out, they talked. If not, he just stared at the wall and thought.

*  *  *

Claire had moved out of their West Hartford home in August to move in with Mitch in Northampton. Claustrophobic in their drafty, poorly-kept-up three-bedroom house with a man she no longer loved, she had begun spending occasional overnights with her sister Pamela in Hadley, across the Connecticut River from Northampton.

One weekend she left on Friday and didn’t come home until early Sunday evening. She seemed lighter on her feet than usual as she swept floors and made lunches for the kids, singing country songs as she skipped this way and that through the house.

On Tuesday of that week she told Peter she had fallen in love. She began spending three or four nights a week with Mitch, and then gave up being a member of the Morgan household for good. She kept her job as a receptionist in a West Hartford medical practice, commuting to work in her Subaru Outback and driving Freddy, but not Ryan, to school.

Peter left it up to Claire to file for divorce; for some reason this detail didn’t seem as urgent to her as getting out of the house.

At 51, feeling old and beaten down from years of misery with Claire, Peter did not expect to jump right back into the dating pool, though even Claire had encouraged him by insisting he was as handsome as ever. Soon after Claire left for good, when she had the kids for the weekend and he was out to dinner with a colleague from the University of Hartford history department, he noticed a married female friend of his at the bar. Her son Conor played soccer with Ryan; she was a few years younger than Peter. Tall, with sparkling blue eyes, graceful curves and long, silky brown hair, Amanda was one of the few soccer moms who had caught his eye over the years. But she was married—even if Peter was now technically available—and their kids were pals. He didn’t know why she was out by herself, but he would not go there.

Amanda wasn’t out by herself after all: Another woman in her late 40s returned from the ladies’ room and joined her at the bar. She was around the same height, with short dark hair; her features, while not unattractive, were plainer than Amanda’s. She wore a loose cashmere sweater that concealed her figure, at least the top half of it. But when she sat down at her barstool and crossed her long, slender, stockinged legs, Peter took a long look, then looked away, and a few seconds later, before he realized what he was doing, looked back again.

At least one of the women noticed, because now they were smiling and laughing with each other, shooting sideways glances at Peter.

The next two hours were a blur of surprises. Peter’s knowing companion excused himself after dinner and urged Peter to stay and “get lucky.” Amanda motioned for Peter to join them. His breath quickened involuntarily when Amanda told him she was getting a divorce. “When’s yours going to be final?” she asked him playfully. Everyone knew.

Dennis, the bowtied, white-haired bartender, opened another bottle of red wine without being asked. Amanda told Peter that Ginny had been divorced for eight years and knew the ropes; she would lean on her for advice. Peter’s mind raced as he considered whether it would be weird to date his 12-year-old son’s friend’s mother. He had even been Conor’s soccer coach. What if he woke up some Saturday morning in Amanda’s bed and Conor was already up watching cartoons and eating Frosted Flakes?

“Down boy, you’re getting ahead of yourself,” Peter thought. What he didn’t realize was that he was focusing on the wrong woman.

When Amanda excused herself to go to the ladies’ room, Ginny seemed shy as she looked at Peter and then looked away at her wine glass. He asked her standard make-conversation questions: Where was she from? Where did she work? Originally from Virginia, she had recently taken a job in Hartford at the same web design and marketing firm where Amanda worked. “And you?” she asked. “Starving history professor,” he said, immediately wishing he hadn’t used the word “starving.” Their exchanges were halting and awkward because they didn’t know where to begin, but Peter found himself oddly at ease with her in spite of it.

When Amanda came back, she whispered something to Ginny, upon which they traded places and Ginny headed back to the ladies’ room. “Peter, I’m so glad you’re here,” Amanda said, looking him straight in the eyes, and then leaning in closer. “She has been miserable for a long time. Her marriage was awful. And she doesn’t date much because most of the available men are awful.” Amanda went on to say that Ginny had almost remarried once but didn’t because her then-preteens hated the guy. “They’re in college now.”

Amanda then put her mouth so close to Peter’s ear that he could feel her hot breath, which made him even more conflicted about the evening’s strange twists. “She hasn’t had sex in three years. She might take you to bed tonight.

“Wait a minute,” Peter protested. “I didn’t come here to hook—“

Ginny was back. Soon they found common ground—movies and music and Malcolm Gladwell essays, and funny stories about how people reacted when they suddenly found out you weren’t with your spouse any more—and the conversation flowed. She smiled and laughed as they talked, and her intelligence made her seem prettier than he had previously thought. At times he could have sworn she was deliberately brushing one of those long gorgeous legs against his.

Amanda put the wine on her credit card and got up to leave, giving Peter one more hard stare for good measure.

He and Ginny lingered a while longer over the last of the wine, and then she invited him up to her nearby apartment for one more glass. She poured him one, but he never finished it.

***

At 5, Freddy didn’t understand why his mother couldn’t stay with him at home any more, but he proved very adaptable and seemed to make the most of the two worlds he lived in. He loved his brother and his father and preferred to be home in West Hartford, but he also loved his mother, and she went out of her way to make sure he and Ryan had a nice cozy bedroom in Mitch’s house with plenty of games and DVDs to occupy them.

Both boys enjoyed walking around in downtown Northampton, with its interesting shops and colorful mix of college students and professors, artists and musicians, and expatriates from New York and Boston who always seemed to be opening up eccentric new businesses. And the ethnic restaurants—especially the funky little place that Freddy said made the “best burritos in the world.”

Ryan didn’t really like the house, but was OK with it as long as he was left by himself or with just Freddy. The biggest difference was that Freddy had warmed up to Mitch, who worked in a record store by day and occasionally had club gigs at night with two different local bands. Freddy sat rapt on the musty living-room couch while Mitch showed off what he could play on his Fender Telecaster.

Ryan wanted nothing to do with Mitch and made a point of breaking his silence with Claire only when Mitch was not in the house. When he came home, Ryan retreated to the bedroom. If he had to sit with all of them at the dinner table he said nothing, and rolled his eyes when Mitch talked about his friends in Portland, Oregon, who had a band that might get a record deal—and might need a new guitarist. Ryan had overheard him talking to Claire about moving to Portland; she didn’t seem too enthusiastic, and instructed him not to talk about it in front of the boys.

Friday night passed without incident. They went out for pizza at a drafty old Italian joint a few blocks from downtown that was favored by locals who snubbed the pricier restaurants on Main Street. As soon as they got back to the house, Ryan retreated to the bedroom and urged Freddy to come with him. They put in a movie and watched it sitting up on the same twin bed, then fell asleep together in the middle of it.

In the morning, Ryan woke up to the sound of Freddy giggling in the living room. When he opened the bedroom door to find out what was going on, the first thing he saw was Mitch, on his knees, leaning over Freddy and stabbing his fingers all over the boy’s stomach and sides. You sure you’re not ticklish?” Mitch asked. Freddy was laughing too hard to answer; it was impossible to tell if he was enjoying it or not. Claire, sitting on the couch, was laughing too. “You’re sure you’re not ticklish?”

The sight of this filled Ryan with nausea. “Get off of him, you creep,” he said.

The whole room suddenly went quiet. Mitch straightened up.

“What did you say?”

“I said you’re a creep and a child molester. Get off of him.”

Mitch, angry, looked at Claire for guidance. He wasn’t tickling Freddy any more, but he was still hovering over him with his knees pinned to his thighs.

“Ryan,” Claire snapped. “You don’t have to be so—”

Ryan wasn’t listening; he was welling up with rage. And before she could finish her sentence, Ryan darted at Mitch, lowered his head, and rammed it into his chest. The impact caught Mitch off balance and sent him tumbling onto his back.

“You little bastard,” he said, and before he knew it he had kicked Ryan in the stomach.

The blow really hurt, and made Ryan even angrier. “You fucking asshole,” he gasped. The Telecaster was only a few feet away in its stand; Ryan grabbed it by the neck and swung the body toward Mitch’s head. He swung hard, and Mitch was barely able to put his hands up to block it. Claire screamed.

The guitar did not break.

Mitch’s hands saved his head, but now both front wrists were throbbing in pain. Claire began to sob. She stood up, walked over to Ryan and looked at him, her body heaving as she sobbed. Their eyes locked in a momentary, burning stalemate. Then she smacked him across the face, cutting his lip on his teeth and giving him what would become a black eye. Then she fell back on the couch, still crying. Mitch was still on the floor, grimacing and rubbing his wrists. Freddy ran to Ryan and clucthed him around the waist.

Ryan gazed around the room and spied Claire’s cell phone on an end table. He kissed Freddy on the head and then disengaged, walked slowly over to the table, saw that her face was buried in her hands, snatched the phone and hurried into the bedroom, closing the door behind him.

In the passenger seat of Ginny’s car, Peter wondered why Claire was calling him.

“Dad, you have to come pick me up now.”

“What?”

“They attacked me. My mouth is bleeding and my stomach hurts and my eye hurts. I hate them. You have to come and get me right now. I hate them. I can’t look at them a minute longer.”

Ginny and Peter had left West Hartford for Boston but hadn’t gotten far yet. Ryan had already packed his backpack.

“OK, we’ll be there as fast as we can. We’re about 45 minutes away.”

Ginny looked frightened. “What happened?” she asked.

Peter repeated what Ryan had told him.

“Oh my god, that’s terrible,” she said. “Was he crying?

“He doesn’t cry,” he replied.

“OK, tell me what exit to take.”

In Northampton, Ryan emerged quietly from the bedroom. Mitch was not in the living room; the bathroom door was closed and there was water running. On the couch, Claire and Freddy had their arms around each other, eyes closed, crying. He slipped out of the house unnoticed and walked to the end of the street to wait.

In Ginny’s car, Peter said, “I’m sorry. I’m sorry to ruin our weekend.”

“Don’t be sorry,” she said. “This is more important. And you’re not the one who ruined it.”

Ginny was angry but didn’t show it. Anyway, she wasn’t angry at Peter, or Ryan. She was angry at Claire. And she couldn’t understand a mother who could abandon her children and not even show love to one of them.

She also wondered how much emotional damage Claire had done to this beautiful, sad little boy who could not cry.

***

The sight of Ryan’s fat lip and swelling eye infuriated Peter. “Who hit you like that?” he demanded.

“It was Mom, not the asshole,” he said.

“OK, tell me exactly what happened.” Ryan described the confrontation honestly, in blow-by-blow detail.

“So you started the actual fight,” Peter said.

“No, asshole started it. He was molesting Freddy.”

“He was tickling him, right?” Peter asked.

“Whatever. It was creepy.”

Peter looked at Ginny. Mitch had kicked Ryan in the stomach, but not until after Ryan had attacked him. If Mitch had bruised his face, he would have pressed charges. But not against Claire. He wondered if Ginny felt otherwise.

Peter knew there was no point in all of them going to Boston and salvaging the hotel reservation, which he had considered. Ryan needed to be home, not walking around a city where people would stare at him and wonder who was responsible for the bruises. Besides, Ryan had warmed up to Ginny only slightly more than he had warmed up to Mitch. He preferred to spend time with his father only.

“We’ll get some ice at the convenient store,” Peter said.

He didn’t know what to say to Claire. He wanted to call her and scream at her. But he had taught himself restraint. He prided himself on avoiding angry, emotional outbursts until he gave himself enough time to clear his head.

He also needed to make sure she knew Ryan was with him. He took a deep breath, took his cell phone out of his coat pocket, and turned to face Ryan in the backseat. He snapped a photo of his face and texted it to Claire, adding just one word.

“Seriously?”

***

The phone call from Mitch’s friend in Portland could not have been timed more perfectly. Any other day, Claire likely would have said no. On this day, she wanted to escape as badly as he did.

And they agreed it could be a trial run. A couple of weeks to see if it might work out. Rent was paid and they could leave the house alone until they decided. They both had a little money, and Claire had vacation and personal time to use. Calling in for Monday was abrupt, but she had been there a while, was a good employee, and was well enough liked to get away with it.

They had to plan quickly. Mitch wanted a couple of days to rehearse the songs before the Saturday gig opening for an up-and-coming indie band. They could spend a night or two with a good friend of his in Chicago, and get a motel for one more night between there and Portland.

“What about Freddy?” Mitch asked.

“He’s coming with us,” she replied without hesitation.

“Don’t you have to tell Peter?”

“I’ll tell him at some point.”

Mitch called his friend in Chicago. “No problem, there’s a spare room waiting for you, you can stay as long as you like.”

They decided to leave that afternoon and take turns driving to make it to Chicago sometime Sunday. Then they would rest for two nights and hit the road again early Tuesday morning. Claire told Freddy they were going on an adventure, that he would see some of the tallest buildings he had ever seen, and that he would love the Lincoln Park Zoo.

That sounded like fun to him.

And it was fun. On Monday morning, Claire and Freddy rode the El downtown and went to the top of the Sears Tower. Then she strolled him up Michigan Avenue. In the afternoon they went to the zoo. He was awed by the big cats and amused by the monkeys. He couldn’t get enough of watching the seals swim underwater. He loved when the meerkats stood up on their hind legs.

At around 4 her cell phone rang. It was Peter. “I haven’t heard from you at all. Did you bring Freddy to school today? Are you picking him up at after-school?”

“We’re in Chicago, she said,” turning away from Freddy so he wouldn’t hear. “We’re going to Portland for a couple of weeks.

“You’re what?”

“You heard me. Mitch has a gig on Saturday. We’re getting away from it all for a couple of weeks. Freddy will be fine.”

“He’s supposed to be in school,” Peter snapped.

“He’ll be fine.” At that, she turned her phone off.

“Why will I be fine?” Freddy asked. “And what day is it? When am I going home?”

“Soon,” she said.

Suddenly he missed Ryan, but he didn’t say anything.

The next morning Claire woke early and did laundry and packed her and Freddy’s things back into the Subaru. Then she got the others up. Mitch’s friend was just leaving for work, and they thanked him. Soon they were all in the Subaru, driving west toward Iowa. Claire sat in the backseat with Freddy, reading and playing games until he nodded off to sleep.

An hour later he woke up and asked if they would be home soon.

“We’re not going home quite yet,” Claire said?

“Where are we going?”

“Oregon. We’re having another adventure. We’ll be home in a couple of weeks.”

Suddenly Freddy was confised and scared.

“Aren’t I supposed to be in school?” he asked nervously.

“You’ll be fine.”

Claire reached out to hug him and saw that his body was starting to shake.

“You’ll be fine,” she repeated. “We’ll have fun.”

“I . . . want . . . Ryan,” he wailed in between the involuntary heaves of his chest.

Finally, Freddy began to sob uncontrollably. He loved his mother, but even her presence in the car failed to reassure him that he was safe. Something was wrong. They were driving far, far away from the life he knew, and he couldn’t understand why. He missed his brother playing games with him, making him laugh, and hugging him on the bed before he went to sleep. He missed his father too. In his agitated state, with tears streaming down his cheeks, he forgot all about his parents’ terrible fights and just wished they could all spend Christmas together in their home in West Hartford. The four of them. No Mitch.

Somewhere near the western border of Iowa, the boy’s sobs finally began to subside. Soon the only sound was the low, steady rumble of the Subaru’s tires as they rolled over mile after mile of I-80, and the occasional momentary roar of a tractor-trailer passing them. Freddy’s head tipped to the side, resting on the soft cloth wall of his car seat, his eyelids closed. They crossed the Missouri River into Nebraska. The December sunset flared wild oranges and reds between the thickening clouds.

Mitch and Claire had not talked since her failed attempt to reassure Freddy, and now she, too, was asleep. It was almost as if they were playing the Quiet Game.

Mitch yawned. He thought about turning the radio back on, and what kind of stations he might pick up out here on the plains. Probably not alternative rock. Nighttime settled in as the sky grew darker with clouds.

About an hour into Nebraska, Mitch pulled into a rest stop, waked Claire, and asked her if she would drive for a while. They had planned on paying for just one motel between Chicago and Portland, and Mitch wanted to make it at least partway across Wyoming before stopping.

Now Mitch was asleep and snoring in the passenger seat. Freddy continued to sleep quietly. Somewhere in the middle of Nebraska, rain began to fall, at first an intermittent sprinkle, then a steady drizzle. Claire turned the radio on and quickly found a country station.

Both hands back on the wheel, Claire gazed impassively at the road ahead. If she felt any sadness or remorse over the series of decisions that had led her to leave her husband and now one of her young sons, she didn’t show it. Mitch didn’t know her well enough yet to understand her bouts of emotional blankness. Like Peter at first, he would think she was feeling melancholy; but as she had explained to her husband, she wasn’t feeling anything at all. It was why Peter had taken to calling her “the ice princess,” even when they were still sort of getting along.

If Peter had been there watching her gaze at the soft Nebraska rain falling on the windshield, he might have joked that her cold stare could turn it to ice.

Soon it began to fall harder, smacking against the glass like a hail of pebbles.

At first Claire thought the wipers weren’t working properly. The rain began to streak and form clumps on the windshield as the wipers tried to push it aside. Suddenly she realized that the rain was freezing on contact. It was freezing on the highway too; a shot of adrenalin rushed through her as she felt the Subaru’s tires lose their grip on the road. She pumped the breaks a couple of times and had some luck slowing the car down while steering it out of the small skids that were threatening to pull it into a spin. She might have succeeded in guiding them safely onto the shoulder with a few more pumps of the brake, but there was no time. The tracter-trailer that had once seemed a good distance behind them was not slowing down, and now the approaching headlights looked like huge sunbeams in the rear-view mirror.

The impact sent the Subaru hurtling off the highway and into the ravine below. It rolled over twice and came to rest on its roof. When the rescue crew arrived 20 minutes later, there was no sound from inside the car.

*  *  *

Ryan hugged his father and said “Love you, Dad,” as he usually did before going to bed. They hugged a little longer than usual, as Peter fought to hold back more tears. Ryan didn’t cry—like his mother, he seldom cried over emotional matters, saving the tears for the times he simply didn’t get his way—but he missed Freddy. And it upset him that his brother didn’t have him there to hug him until he fell asleep.

Once Ryan had gone to sleep, Peter sat down on the couch and tried to watch TV. He poured a glass of wine, filling it almost to the top because he was afraid he wouldn’t be able to sleep. An hour later, in bed, he cried softly for an hour, wondering where Freddy was and if he missed his home.

Because Claire had already changed her license and registration to her maiden name, and her cell phone was not recovered, and there was no one at the small house they had left behind in Northampton, the news was slow to reach even her sister, who was married and had a different last name. Local police tracked down Mitch’s mother first, but she knew little about Claire and had no information to provide them. Early that evening, they were able to locate Pamela, who, distraught over the news, couldn’t find Peter’s cell phone number but knew the home address by heart.

On the second morning after the accident, just after Ryan had left the house to catch his bus to school, Peter’s doorbell rang. It was two West Hartford police officers.

They asked if Claire Hansen was his wife. He nodded. They told him that Claire and and a man named Mitchell Levering had been killed in an accident Tuesday evening in freezing rain on a highway in Nebraska. Peter’s heart began to thump so loudly he felt like it might explode.

But there was good news. A small boy had survived the crash. Was he your son? He was unconscious when they found him but he appeared to be largely unscathed; he was tightly buckled into the car seat and apparently had suffered no trauma, even though they had landed upside-down. They were holding him for observation in a Lincoln hospital, awaiting word from next of kin.

Peter stood in front of the officers and tried to make sense of what they were saying. His face was frozen in shock. His heart was still beating wildly. Claire was dead. His brain struggled to process that fact. Claire was dead—but Freddy had survived.

Freddy was alive.

One of the officers handed Peter a piece of paper with contact numbers for the hospital and the Nebraska State Police.

“We are very sorry for your loss,” the other one said. “And thankful that your son survived. Apparently it was a miracle.”

Peter thanked them and closed the door. Seated at his kitchen table, he let the tears come. He had never cried so much in his life. There were tears of joy that Freddy was alive, and tears of sadness at the thought of him lying alone in a hospital far from home, with no family to comfort him. He and Ryan would fly out there as soon as he could book a flight.

And there were tears for Claire. Tears of sorrow for their doomed relationship, for her inability to connect emotionally with her oldest son, for her increasingly desperate attempts to change her life for the better. Though he knew in his heart that they were not destined to stay together, he found himself thinking about a vacation at the Cape, years ago, when they had almost seemed happy, and wondering if he could have loved her a little better, listened a little more closely to what she was trying to tell him she needed, and tried a little harder to bring to life the empty part of her soul that could feel nothing.

His mind snapped back to the present as he realized how much there was to do. It was Thursday. He called the history department office said he was leaving town for a family emergency and to cancel his classes through midweek. He got out his laptop and began searching flights and hotels. He spoke with the Nebraska State Police, who also asked him to make arrangements to identify Claire’s body, and then the hospital. As long as Peter had proper identification and Freddy’s birth certificate, they could discharge him into his care as early as Friday.

The late-afternoon flight meant Peter had to get Ryan out of school early. He told the attendance officer it was a family emergency; when Ryan arrived at the office from class, Peter said simply that they were going to pick up Freddy. “I’ll tell you more later,” he said. “Pack a suitcase for a couple of nights.

In the car on the way to Bradley Airport, Ryan asked, “Where are we going?”

“Nebraska.”

“Nebraska?”

“Freddy’s in Nebraska. We’re going to pick him up.”

“Is he with Mom?”

“I’ll tell you more when we get out of the car, okay?”

Peter found a space in long-term parking and they wheeled their bags to the airport entrance. Peter stopped and turned to Ryan. “Give me a hug.”

Ryan knew something was up. He put his arms around his father and waited nervously.

Peter told him what he knew about the accident. Freezing rain. Struck from behind by a tractor-trailer. Rolled over twice and landed on the roof. Peter was crying now and his voice shook as he spoke. “Mom and her boyfriend were killed.”

Ryan, who had stood silently with his arms around his father’s waist while he listened to the news, suddenly pulled away. He looked at Peter quizzically, though his expression betrayed no emotion.

“Is Freddy hurt?”

“Amazingly, no. The car seat saved him”

“Where is he?”

“In the hospital. They’re letting him out tomorrow.”

“Is he all alone?”

Peter wasn’t sure how to answer. He wondered if Ryan was feeling the same thing he was: a mixture of sadness, anxiety, and frustration that there was nothing they could do to get to the hospital faster.

“There are nurses on the hall 24-7.”

“Is he . . . How long has he been alone in the hospital?”

“Since they airlifted him Tuesday night.”

“Can we see him tonight?”

“I think so. We’ll see.”

They went through security and took seats near the gate. Peter gazed blankly at the departure board and wondered what Ryan was thinking. He hadn’t said a word about his mother. All those years of silence between them, and now she would be silent forever. He had no way of knowing if Ryan felt anything, even now. He turned to look at him.

“You okay?”

“Yeah.”

“You miss Freddy?”

“Yeah.”

“I can’t wait to see him.”

“Me too.”

Peter could always tell when Ryan was glad to be with his father. He thought of all the times he was about to get up from dinner, and Ryan wanted to sit and talk a little longer. And the mornings when he missed his bus so Peter would have to take him to school and they could spend a little more time together.

And although they often fought, like all brothers do, Peter knew Ryan and Freddy shared a tenderness that was pure brotherly love. Freddy needed his brother’s comfort, and Ryan was happy to provide it.

He just couldn’t tell if Ryan felt anything for his mother. Even now, with her gone. And he wondered if he would ever know.

Peter snapped out of his reverie as the attendant annouced their flight was boarding. As her voice filled the waiting area, he also realized that Ryan had said something.

“What?”

He turned to look at Ryan, who was looking straight ahead. His eyes appeared glazed; his lips were parted in what almost looked like a half-smile. He spoke up softly.

“Freddy will be home for Christmas.”

“Yes,” Peter smiled. “Freddy will be home for Christmas.”

Suddenly, Ryan burst into tears. Tears unlike anything Peter had ever seen before. Ryan clutched his father and buried his face in his sweater. He began sobbing in rhythmic bursts as he took deep breaths before letting out each new wail. Finally he pulled away and tried to quiet himself down as he rubbed his eyes. Peter brushed the damp front of his sweater with his hand.

“Sorry Dad.”

“It’s okay.”

Ryan’s body still shuddered as he tried to stop crying. The attendant called out their section of the plane for boarding.

“We have to get up and get on the plane now,” Peter said.

“I know. Just give me a minute,” Ryan said, wiping his eyes again.

Were the tears for Freddy? For his mother? For everything?

“It’s okay to cry,” Peter said.

“I know.”

Copyright @ 2020 Stephen Leon

COVID: The Sequel

Mass vaccination and adjusted social behavior may finally get the pandemic under control. Then the medical world will have to turn its attention to the next chapter—millions of people suffering from long-haul COVID

By Stephen Leon

May 2, 2021

As the pandemic took hold in the United States in March 2020, Caroline, a healthy, athletic woman in her late 20s, began to feel unwell. There was no COVID-19 test to be had at that point, but she called her clinicians to describe mild to moderate symptoms such as fever, respiratory difficulty, gastro-intestinal irritation, and loss of taste and smell—which came and went, and not all at the same time.

Caroline’s clinicians diagnosed her remotely as having COVID.

The fever, the teeth chattering, and the gastro symptoms went away—but not the fatigue, the body pains, or the neurocognitive symptoms, including sleep disturbance. Ten days later, 20 days later, a month later, she still hadn’t fully recovered.

Finally, eight months or so after the onset, Caroline had a COVID test, but it was negative, and an antibody test showed no antibodies. And without a positive test or antibodies in her system, she has found it difficult to find someone to treat or manage her condition. Most clinicians tell her that her persistent symptoms might or might not be COVID. And some say things like, “I have no idea what to tell you,” or “Are you sure this isn’t stress?”

Dan, in his late 30s, is a care provider for diagnosed COVID patients and their families. For a while, he continued to test negative, but began having symptoms about eight months ago. He was never hospitalized, and never had a positive test, without which the clinician who was seeing him would not diagnose him, in spite of all of the clinical indicators.

Dan still suffers from many long-term symptoms; his new clinician is helping him put together a team of specialists to develop and manage his treatment.

Caroline and Dan appear to suffer from what has come to be known as “long-haul COVID,” in which some manifestations of their illness just don’t go away, with symptoms sometimes mimicking those of other types of chronic illness.

In fact, more prior investment in chronic illnesses, and a better understanding of how they work, could have helped us to prepare for long-haul COVID, says Ken Friedman, Ph.D., a retired professor of pharmacology and physiology and a longtime researcher of chronic conditions. Instead, the medical establishment in the United States has been slow to recognize and research chronic illness, and soon will pay the price: dealing with an onslaught of as many as 9 million long-haul COVID cases in the coming years in the United States alone, based on Friedman’s statistical analysis of recorded COVID cases.

Dr. Kenneth Friedman

Patricia Fennell, MSW, LCSW-R, a researcher and clinician who has been researching and treating chronic illness for more than 30 years, agrees with Friedman’s assessment. “The medical establishment,” she says, “has been slow to recognize the need for specific treatment approaches for the chronically ill, and to integrate them into their medical education curricula. And from what I can already see in requests for treatment of long-haul COVID, we are not prepared for what’s coming.”

So far, Friedman warns, “we have not seen a response proportional to the severity of the crisis that is about to befall us.”

***

Friedman, a Brooklyn native, has a combined degree in biology and chemistry from Lawrence College in Appleton, Wisc., and a Ph.D. from the State University of New York at Stony Brook, and was a postdoctoral National Institutes of Health fellow at UCLA before becoming a staff fellow at NIH. From there, he became an assistant professor at New Jersey Medical School in Newark. Friedman had decided he didn’t want to be a doctor—“I really didn’t like the sight of blood”—and was more interested in helping people through research.

One day, his desire to help people hit so close to home that it forever changed the trajectory of his research career.

Friedman’s teenage daughter, Deborah, was an academic standout and was admitted to Tufts University after her junior year of high school. But after a few months at college, she became very ill, and explained her symptoms to her father. “I said, ‘Honey, you have mono. Go to student health services. Mono is very common in college students. They’ll know what to do.’ ”

“That was the biggest mistake of my and her life,” he says. “They missed the diagnosis, told her she had depression, and sent her back to her dorm room. Eventually she got so sick that she called me one afternoon and said, ‘If you don’t rescue me, I’m going to drown in my own vomit.’ ”

“I was five hours away and couldn’t do it,” Friedman says, but he did track down a nurse to look in on her, and she took Deborah to her house for observation. After two days, the nurse called him up, and said, “I don’t know what the hell she has, but you better come get her.”

When Friedman finally picked up his daughter in Boston, he had to carry her into the car, and then carry her out again when they arrived home in New Jersey. He began taking her around to see other faculty at New Jersey Medical School, where he taught.

“Everyone at my medical school threw up their hands and said, ‘I can’t help you’,” Friedman recalls. “If a faculty member can’t get help at his own medical school, what is the recourse?”

Friedman began poring over the available literature on Deborah’s symptoms, and eventually decided she had chronic fatigue syndrome (now known as myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS). One of his colleagues was studying it, but he wouldn’t see Deborah because she hadn’t been sick long enough; a patient had to be ill for six months or more to get a CFS diagnosis.

“So I went back to the literature, and I found that physical therapy was sometimes helpful.” Friedman found a physical therapist who did something called “Rolfing,” a process that reorganizes the body’s connective tissues, named after its founder, Dr. Ida P. Rolf. This therapy had shown some success with CFS patients, and it did help to get Deborah walking again.

As she gradually began to improve, she wanted to go back to school. “We warned her of her limits,” Friedman says, but as she was young, she sometimes exceeded them. It took six years, but she did get her degree.

After graduation, Deborah Friedman worked for companies like Raytheon and Lockheed. “It was a struggle,” her father remembers, but “eventually she applied for and obtained a position with the Johns Hopkins Applied Physics Laboratory in Baltimore.”

The long hours and pressures of that job caused her to “crash severely,” Friedman says, “to the point where we had to sell everything she had and bring her up to Vermont, where [Friedman and his wife Ruth] were living, to resuscitate her.” Finally, she went back to Harvard Adult Extension, where she could take one course at a time, and received a master’s degree about a year ago.

“Having a chronically ill child was not something that we had envisioned,” Friedman says. “It is life-changing not only for the patient, but for the parents. My initial objective was to solve it, to cure her. And that was based upon the belief that this was a disease like any other disease,” caused by an infectious agent, “and therefore cured by the removal of that infectious agent.”

“And that belief was based on what was written in the medical literature. But the medical literature is wrong.”

***

“For many doctors, the strange symptomology of long-haul COVID calls to mind another mysterious, poorly understood condition: myalgic encephalomyelitis, more familiarly known as chronic fatigue syndrome,” wrote Moises Velasquez-Manoffin in a January 21 New York Times article titled “What If You Never Get Better From COVID-19?”

Velasquez-Manoff went on to point out that “ME/CFS-like syndromes have been linked with infections for more than a century—including, most recently, those caused by the viruses responsible for the SARS and H1N1 pandemics in 2003 and 2009.”

And according to Fennell, there is growing evidence that COVID-19 already has ignited a public-health crisis that will persist long after vaccinations help us reach “herd immunity” and many of us put our masks away. “We are getting increasing numbers of requests from medical professionals who either have personally suffered COVID with the long-term symptoms themselves, or their family members have,” Fennell says. “We are also getting requests for consultation from physicians who are overwhelmed by the emotional burden of caring for COVID-19 patients. Some of these clinicians are traumatized from the care they are providing, and are suffering long-term after-effects themselves, which is part of the larger, expanding public health issue of COVID-19.”

In addition to SARS and H1N1, Friedman says, there are “post-acute infectious syndromes” associated with many infectious diseases, among them, mononucleosis, Ebola virus disease, and Lyme disease.

But some of the early research into long-haul COVID and its treatment has not taken past research into account. “What they have done,” Friedman says, “is they have ignored the relevant data of other diseases. Why aren’t we looking at these all together?”

Friedman and some other researchers contend that where symptoms of long COVID are similar to those in patients suffering chronic illness in the post-acute phase of any of these diseases, treatments previously developed for those diseases may be effective for long COVID.

“Obviously we want to learn as much as we can about each new [infectious disease],” Friedman says, “but in the meantime, treatments have been developed for symptoms which are similar across the spectrum. Why not apply what we already know, and consider how the diseases may be similar?”

“Diseases tend to be viewed as silos,” he continues, “as unique symptoms that have to be treated as no other disease is treated. The treatment is only effective for that one disease and does not apply to any others. That is not true.”

“The body does not care what the infective agent is.”

He offers the analogy that the body has a finite playbook of responses for infection, and it will employ those responses to the best of its ability to overcome the infection.

But, Friedman says, in long-haul COVID—as in ME/CFS—the body’s response is “overblown.”

“The plays in the playbook are not perfect. And some of those plays can do damage. Where medicine comes in, is that sometimes the physician can control the plays in the playbook so that they do not do damage.”

The failure to apply models of care previously developed for ME/CFS, Friedman suggests, is a symptom of a more grave issue: The medical establishment still does not fully recognize chronic illness “as a serious medical condition worthy of treatment. I think that most chronic illnesses are not given as serious a consideration as are acute illnesses.”

With acute illness, he continues, “you go to a physician and describe your symptoms, your physician develops a theory of what is wrong with you. … And once the underlying cause is found, the physician will know how to treat it. But for these chronic illnesses that don’t have a ‘tell,’ it becomes much more difficult to diagnose, and much more difficult to treat. So that’s why these conditions are not treated.”

And the U.S. government, he adds, “was very narrow in its approach to dealing with the pandemic. They put all of their eggs in one basket and focused on developing a vaccine, and avoided development of a treatment.”

“The CDC already has a model of care in place that would work for long-haul COVID, and that model of care is the model they developed for ME/CFS. The question is, ‘Why they would not implement that model of care now?’ ”

“If they would fully implement that model, both the ME/CFS patients and the long-haul COVID patients would be receiving care right now.”

“Going back 30 years,” says Fennell, “I, among others, have developed treatment approaches for long-term chronic illness. They are there. They should be adapted and used.”

Instead, Friedman fears, most people are not aware of or prepared for the “dim picture” that awaits us down the road, with between 3 and 9 million people suffering from long-haul COVID, according to his statistical model.

“That’s a lot of people.”

Potentially making matters worse, 3–9 million long-haulers is a projection based on the number of people who had been diagnosed with COVID as of a few weeks ago. But two current trends do not bode well: (1) the refusal of a significant number of persons in the United States to be vaccinated, and (2) the ongoing failure by the FDA to approve any treatment of COVID in its early stages. If these trends continue, then the number of long-haulers is likely to exceed the estimate.  

“The prognosis in terms of disability, and the number of people requiring social and financial support, is going to be very large in comparison to other diseases,” says Friedman. “And that should be a concern.”

END

Copyright 2021 Stephen Leon

This story also appears on the blog at albanyhealthmanagement.com, the website of Albany Health Management Associates, Inc., Patricia Fennell, president.

Effective April 26, 2021, Kenneth Friedman has received an academic appointment as adjunct associate professor, Department of Medicine, School of Osteopathic Medicine, Rowan University, Stratford, N.J.  

A Life in Hospice

Deborah Lee talks about the joys, challenges, and rewards of her 30-year career in Hospice: A Memoir of Life Among the Dying

By Stephen Leon

The song playing in Deborah Lee’s head wasn’t just a temporary annoyance, like a tune that gets lodged in your brain after you hear it over the supermarket sound system.

It was a sign that she had found her calling.

The story of “Graciela Hernandez” is such an important milestone in Lee’s 30-year career as a hospice worker that she decided to tell it in the first chapter of her 2020 book Hospice: A Memoir of Life Among the Dying.

Deborah Lee

The chapter, titled “There’s a Lot They Don’t Teach You in Graduate School,” recounts how Lee, then a relative newcomer to social work, had been assigned to the Hernandez family because they were not feeling a positive connection with the nurse who had been visiting from Lee’s hospice team. Graciela, 15, was dying of cancer; as Lee prepared to ring the doorbell of the Hernandez family on a February day in 1991, she worried that she, too, would fail to connect.

For one thing, she was afraid there might be a cultural barrier with Graciela’s parents, who were Mexican-American. And while the parents were losing their only daughter just as Graciela was coming of age, Lee was eight months pregnant, visibly ready to experience the joy of bringing a new child into the world.

Mr. and Mrs. Hernandez were polite but cool; the girl lay comatose on her bed. Lee stayed by Mrs. Hernandez’s side while she administered a feeding tube, and as Lee sensed a slight warming from the woman, she found herself quietly shifting from an intellectual approach to a more intuitive one. Back at the kitchen table, Lee began to notice a song that was running through her head.

“I was relatively new to hospice, and relatively new to social work,” Lee recalled in a recent interview. “I was not accustomed to trusting my gut in my work. I was still pretty concerned with doing things ‘right’ [here Lee, sitting across from me, raises her fingers in quotation marks]—So when I first started hearing that song in my mind, it was more a distraction than anything else. I didn’t initially perceive it as having any clinical relevance.”

But the song would not go away, and Lee couldn’t ignore it any longer.

“I started to feel like I was supposed to say something about this to the family. And that feeling just kept getting stronger … to the point that it almost felt like screaming in my mind: Say it! Say it! So I did.”

“Never in a million years could I have anticipated what that unleashed.”

Lee told Graciela’s parents about the song in her head—“You Are My Sunshine”—and added that she must sound crazy, but felt for some reason that she needed to share it. As Lee waited for a reaction, first Mrs. Hernandez, then Mr. Hernandez, burst into tears. The song, they explained, was their daughter’s favorite as a young girl. Then Lee burst into tears as well.

Suddenly, the family’s experience with the previous nurse made sense; “the Hernandezes,” Lee wrote in Hospice, “felt that she did not truly understand what they were going through. They needed someone to see past their controlled, critical presentation to the agony within. When I ‘heard’ their daughter’s song—despite the disease, despite the passage of many years—they knew I could hear them.”

“As my hospice work continued,” Lee says, “I came to recognize this experience as what I call a ‘God moment.’ Hospice is full of God moments if you listen for them.”

***

Deborah Lee was born in Chicago and raised there until she was 14, when she moved with her mother and stepfather to the Milwaukee area. Her parents had divorced when she was 2, and her father also remarried. Her complicated family life as a youth fed her restlessness as a young woman; in her college years, Lee “wandered around a bit” and attended three of them, “but the piece of paper says Northwestern.”

Next, she fulfilled a dream to move to California, where she lived from 1978 to 1983. “And that was a very significant awakening to the real world,” Lee says. “My California fantasy was that that was where all the hippies lived. And I was going to go out there and be a hippie.”

However, she says, “absolutely nothing that happened in California worked out the way I hoped it would. The whole hippie ship had sailed by that time. In retrospect, it was a good experience. Let’s just say I got a lot out of my system. At the end of five years, I slunk back to Chicago with my tail between my legs.”

Lee returned to her hometown “feeling like I needed to get serious about what I was going to do when I grew up.” She worked for two years as a legal secretary for a divorce attorney in downtown Chicago; she liked her boss and enjoyed the job. But the wheels in her head were turning.

“I had two insights during the two years I worked for him,” she says. “The first was that the most enjoyable part of the job for me was listening to his clients pour out their hearts about what they had been through. I encouraged them to get this off their chests with me, because unlike my boss, I wasn’t charging by the hour.”

“The second thing I realized is that I was not going to want to be doing that same job when I was 50.” At that point Lee decided it was time to go to graduate school “and have a career and not just a job.” She applied to Loyola University in Chicago, where she earned a master’s in social work.

The idea of social work had been bubbling under the surface for some time. As a teen, Lee had enjoyed hanging out at a drop-in center staffed by students doing graduate study in social work. Also, “my stepmother was a social worker. And I admired her tremendously. So you put all that together with the fact that I enjoyed listening to my [lawyer] boss’ clients and trying to help and support them.”

There was one more piece to the puzzle, and her therapist helped her figure it out.

“I essentially grew up with four parents,” Lee explains. “They were all good people, but they were not perfect. I was certainly not abused or deprived in any way, but I wasn’t particularly happy.”

After her return from California, she went into therapy for about a year. “Toward the end of that time, I told my therapist that I was planning to go to social work graduate school. He asked me, ‘What is it in yourself that you’re trying to fix?’”

“I came to the realization that I was still trying to sort out the many mixed and conflicting messages I had gotten while growing up. And that was basically it; he gave me the insight that there was something I was trying to figure out by going to graduate school.”

***

About a decade into her hospice career, Lee got to thinking that she was having experiences, through her patients, that the average person didn’t have. “And I started writing about them,” she says, “just to process my own thoughts and feelings about them.”

Twenty years later, at the end of her 30-year career in hospice, Lee had about 20 pages’ worth of stories. “When something happened that I felt was worthy of writing down, I wrote it down. But I still was not thinking ‘Oh, I’m going to write a book.’”

After the pandemic hit, and it became apparent that it was going to go on for a while, the now-retired Lee was looking for something constructive to do with her time. And she started thinking seriously about turning those 20 pages of stories into a memoir. But she was unsure which direction to take; some of the stories (like Graciela’s) were interesting case studies, while others were more like educational essays. She could take a pragmatic approach and write an educational book for hospices to buy in quantity and give to families, or she could write more of a memoir.

At that point, Lee enlisted the services of a freelance editor, Elizabeth Judd, for what was called a developmental assessment. “She had done a lot of editing on books related to health care and to spirituality; she was the perfect person to guide me,” Lee says.

“She was a tremendous encouragement to me. She told me that she really enjoyed the excerpts that I sent her, and that it was one of the more gratifying things she had edited recently because she actually felt I was a good writer.”

And Judd nudged her toward memoir: “Write more stories. Write more stories.”

Hospice is a testament to the complex, poignant, rewarding, and often spiritual nature of hospice work. It also is eye-opening for anyone who might wonder why people like Lee do such “depressing” work.

“First of all, it’s not depressing. We, the hospice team, walk in and find some miserably sick person lying in a bed, and there’s lot we can do to make them better. When the family looks at their dying loved one, they see what I call ‘ghosts.’ They see not just the person in front of them at that moment, but all the people that he or she used to be. We, the hospice team, don’t know all those people. … We only know the person who is there now. That gives us a different perspective than what the family has, and a greater degree of objectivity.”

“For me, and probably the majority of hospice workers, there is a strong spiritual component to our work. Hospices themselves are not religious organizations. … But the majority of hospice workers that I have known bring some sort of spiritual perspective with them. They may or may not be religious, but the majority of them are highly spiritual. For me personally, I have a very strong sense that hospice work was my ministry.”

While some theories of human development end with physiological maturity, the psychologist Erik Erikson postulated eight stages of development through life, the last being “ego integrity vs. despair,” in which people attempt to reconcile their life successes and failures. Lee says she used the Eriksonian eighth stage a lot in her work with hospice patients.

“All of us want to think that our lives have some kind of meaning,” Lee says. “And as the hospice patient tells me about himself, I can help them see what some of that meaning might be and I can validate that for them.”

“Sometimes they have regrets. I try to help each person sort out those things that they felt good about, and help them come to a place where they can feel that their life overall had a positive effect. Some people, sadly, are truly in despair. There were those few that truly felt they had wasted their lives and messed up their opportunities. And that’s not something you can fix on somebody’s deathbed. What I could give them was the opportunity to be heard and accepted by me, without judgment.”

And then there are the crazy spiritual moments that sometimes accompany the last hours of a person’s life—or maybe even the hours just afterward. These are Lee’s “God moments”: improbable situations that invite us to consider mystical explanations over rational ones. A group of robins gathering in a tree outside a hospital window in the middle of a snowstorm. A red balloon that hovers around an apartment entryway on a windy day, never blowing away, as if waiting for someone inside. An experienced Air Force pilot who dies a few hours before a living pilot engineers a miracle Hudson River landing of his distressed plane, carrying all passengers to safety.

While the paranormal explanations for these stories (especially the one involving “Sully” Sullenberger) can seem farfetched, still, one has to wonder: On that winter day back in 1991, by what passageway did “You Are My Sunshine” enter Deborah Lee’s brain?

The day she “met” Graciela, Lee began to better understand hospice work as her calling, and hospice patients and their families as people whose lives and connections with loved ones can be improved under the empathetic care of hospice workers.

“I learned a tremendous amount, over the course of 30 years, about how different people face their own mortality,” Lee concludes. “And that has been helpful to me in thinking about my own eventual death. I hope that when my own time comes that I can bear up as gracefully as some of the people that I met.”

Hospice: A Memoir of Life Among the Dying, by Deborah Lee, was published in 2020 by BookLocker (BookLocker.com) of Saint Petersburg, Florida.

Deborah Lee is a colleague and associate of Patricia Fennell of Albany Health Management Associates, Inc., on whose website this story also appears.

Choosing Up Sides

Soccer, race, and one spring afternoon at Princeton

Author’s Commentary:

I hesitated to post this personal memory of a single day in my life because I’ve questioned its significance to anyone but me. At times when I think about it, it seems worth telling, but other times it seems fleeting and slight. It happened four decades ago, and while it is about race, it does not have the urgency of the life-and-death situations we are grappling with today. No one was brutalized. No police were called. No one’s right to be present on an Ivy League campus was questioned. I can’t even state with certainty that the action described came from racist intent, or caused emotional or psychological harm, which is also why I am not using any names.

I did want to write this down, and first I tried to use it as the basis for a longer short story about the fickle nature of memory. I have written most of that short story, but I’m not happy with it, so I set it aside and took a stab at telling the story directly as nonfiction.

So here you are. I still have my doubts, but who knows, maybe the outcome speaks for itself.

April 1978

“You two, over here. You and you, over there. Stand together in your corners so we can do this quickly.”

The two Princeton soccer captains running the spring practice looked thoughtful and businesslike as they motioned the players one by one to gather around one of four cones spread out in a square. They were longtime varsity starters who commanded respect and went about the task with an air of authority.

The varsity head coach was never at these spring training sessions, perhaps because NCAA rules at the time forbade his presence. I can’t recall how word got around about the practice, but most of the players associated with the varsity program knew about it. Most of us had already played for the varsity “A” or varsity “B” squads. Others would come too, especially if they had at least tried out for the team and/or had friends who had played. There must have been at least 35 young men at the practice that day, enough for four teams and two simultaneous scrimmages.

For several minutes I barely noticed how the teams were being divided up; I was just anxious to play. As a walk-on, I was never really in the coach’s varsity “A” plans, but I had been a top scorer on varsity “B,” and I always tried to be optimistic and work hard on the field so one day I might be told to dress for an “A” game. That afternoon, until we were assigned teams, I stood and chatted with a friend who played with me on the “B” squad and also was not likely to move up.

At first I assumed the captains were simply trying to divide up the talent fairly. They would pause between each selection, murmur to each other, and then one would point to a player, motion to a cone, and say, “You, over here.”

Even when the teams were nearly complete, there appeared to be some sort of calculus at work in creating balanced matches, as the captains would consult briefly and then one of them would ask two players to switch.

During my years at Princeton, the varsity “A” squad was always almost exclusively white. I’m looking at the team picture from my senior year, and there is one player of hispanic origin, one Asian-American, and one Iranian. Whatever the reasons for the overwhelming whiteness of Princeton soccer, the team makeup mimicked the color lines of top youth soccer programs across America as the sport steadily gained in popularity. Unlike in most countries in the world, where many successful players come from poor or working-class backgrounds, the United States soccer development model favored affluent suburban familes who could afford the pricey fees of the best clubs and the tournament travel that came with them.

Not pictured in my yearbook are the many black players—some American, some native African—whom I remember playing with, in varsity “B games,” in pickup games, and in spring training sessions. In my first “B” game as a freshman, a quiet young man from Ghana scored two stunning first-half goals from 35 yards out. At halftime, he left the field, never to return. I don’t know why. But others stuck it out. Maybe they thought the coaches might one day notice their talent; maybe they just liked to play. A bunch of them were there that April afternoon.

The sorting process took less than 10 minutes, and only when it was over did I realize that the captains had created two teams of almost all white players (plus the exceptions noted above), and two teams of all blacks; both of those teams were sent to play each other on an adjacent field.

While this moment from many years ago remains poignant for me, it was a fleeting moment, and (as I noted in my opening comment), I hesitate to make too much of it or speculate on any lasting memory for anyone else but me. That said, I have two personal memories, one clear as if it were yesterday, one fuzzy and thoroughly unreliable. And I have a modest regret.

I’ll never forget the faces of the black players as they trudged up the little hill to the other field and looked around at the unfolding scene: a clean separation of black from white, almost as if we were chess pieces being sorted after a match and pushed back to our respective sides of the board. While I can’t speculate whether the looks on the faces displayed barely concealed anger or hurt, I can say they carried a knowing, been-here-before look of indignity.

The regret is that I never asked any of them, that day or later in the spring, how they felt about it. The journalist in me wasn’t quite out of the bottle yet.

The fuzzy memory is whether my varsity “B” friend and I played in the “black” game. We were assigned to the “white” game, but years later when I thought about that day, I had a memory of me asking my friend if he would join me if I walked up the hill. And he agreed, and one of us turned to the captains and said, “We’ll play in the other game today, if you don’t mind.” But memory is fickle, and I don’t know if we really did that, or if I just wished we had. And since false memories are as easily etched into the brain as real ones, I can’t tell you which is the truth: the action of solidarity, or the inaction of going along with the status quo. And I guess it doesn’t matter now.

Copyright 2020 Stephen Leon

Who Let You In?

How long has the side door been open for privileged students disguised as college sports recruits—and do flexible roster sizes help them over the threshold?

March 20, 2019

Tom (not his real name) was one of the nicest guys in the Princeton University varsity soccer program. Like me, he was relegated to the Varsity “B” half of the program, playing a schedule that included only the Ivy League colleges close enough to keep travel expenses to a minimum (no bussing to Harvard or Cornell and staying overnight) and that was filled in with nearby schools like Trenton State and New Jersey institute of Technology.

Tom and I were different in one regard: I was a walk-on with just enough talent to earn a spot in the program. Tom, on the other hand, was a recruit. As for his talent on the pitch, well, I’ll defer to him.

Tom’s family lived in the affluent North Shore suburbs of Chicago, but his personality and character were not adversely affected by his zip code. Unlike some Princeton students of considerable wealth and privilege, he did nothing to flaunt his social status or betray any feelings of superiority. I recall one student who detested the food in the campus dining halls, and instead dined most nights at the tony French restaurant in town; and another who complained so predictably about being tired after every vacation excursion to Europe that he earned the nickname “Jet Lag.”

Tom may have shared their privilege, but not their ingrained sense of belonging to an entitled class. Tom was humble, and never more so than one day after practice when several Varsity “B” mates sat around chatting. On that day, he confessed to something the rest of us might have already suspected: that he had not been a standout on his high school soccer team. Somehow, he had been nudged into the pool of recruits for the Princeton soccer program, and was admitted as a scholar-athlete, a fact that made him “embarrassed.”

This morning I read about Lauren Isackson, a young woman who was admitted into the elite UCLA women’s varsity soccer program in 2016 alongside recruits good enough to play for the U.S. and Canadian national teams. Isackson had no competitive soccer experience, a fact that has gotten her and her parents ensnared in the huge college-admissions scandal making headlines this week.

Isackson’s parents allegedly conspired with Rick Singer, the mastermind of the vast nationwide fraud, to bribe her way into UCLA as a soccer recruit. Because the UCLA student-athlete admissions committee required her to play on the team for at least one year, she was given the number 41, listed as a midfielder on the roster, and described as a “practice player.”

All of this got me thinking about roster sizes of college sports programs, because I know that sometimes they’re larger than necessary to field a top-level competitive team. My son played two seasons for a highly rated Division III college soccer team whose coach keeps something like 28 players on the roster. With a limit of 11 players per side on the field at any one time, a roster of 20 to 22 players can take a team through a season with enough depth to cover substitutions, injuries, the benching of underperforming players, etc. When you get up to numbers like 28 or 30, you have players who hardly ever see game time.

This doesn’t necessarily make any given college sports program susceptible to fraud, but it can open a side door for coaches, parents, and well-connected facilitators to try to game the system. When the roster size is flexible and you can add an undeserving player without taking a spot away from a deserving one, it does cheat other applicants whom the college turns away, but without negatively impacting the sports program.

And thinking back to my years at Princeton, the varsity soccer program carried upwards of 35 players because they were able to make schedules for two teams. What that meant hypothetically—and I’m not making any accusations—is that there was plenty of room to stash a mediocre player on the “B” squad without diluting the talent on “A.”

To follow this hypothetical scenario to its most cynical conclusion, suppose “Tom”—or some other student similarly unexceptional at soccer—attended an exclusive prep school or a top public school in his affluent zip code. As adequate as his grades and test scores may have been, they might not have measured up to other students from the same school who also had Princeton in their sights, crowding the applicant field from their school and lowering Tom’s chances of getting in. So his parents, fearing their son’s (or their own) Princeton dreams might not come true, made a couple of well-placed phone calls …

And lo and behold, Tom became a soccer recruit and slipped in the side door.

I hope this didn’t happen in Tom’s case.

But in light of the current scandal, I can see how it could have happened.

And I have to wonder, just how long has this been going on?

Copyright 2019 Stephen Leon

Update: The Hidden Dangers of Heat Waves

By Patricia Fennell and Stephen Leon

(Updated 7/31/18)

In the first week of July 2018, a brutal heat wave gripped much of the Northern Hemisphere, smashing temperature records and taking a toll on the health and well-being of people living anywhere from California to Quebec to the Middle East. For many of us, the physical discomfort and shortened tempers were bad enough; the less fortunate among us suffered through health setbacks, some serious, and heat-related deaths were reported from many regions. In the Canadian province of Quebec, more than 70 deaths were attributed to heat. (Quebec has a more inclusive system for reporting heat-related deaths than some other provinces and states, many of which probably undercount the number of deaths in which heat actually was a factor.)

Here in the Northeast, the rest of July was not as bad as that first week, but we continue to see many days with temperatures in the 90s, nights when the mercury fails to drop below 70, and plenty of oppressive humidity. It’s safe to assume we’re not out of the steam bath yet.

(Note: the rest of this article was posted during the July heat wave on the websites of Albany Health Management Associates and Stephen Leon.)

When a summer heat wave settles over us like a shroud, we know what we can expect from the headlines. There will be warnings to stay inside in air conditioning, stay hydrated, and keep physical exertion to a minimum. There will be reports of hospitals taking in victims of heat stroke and heat exhaustion, and of worse, the grim stories of heat-related deaths.

We can also expect a spike in certain types of crimes, regardless of whether they make the headlines. Statistically, we know that some categories of crime do not fluctuate with the air temperature—but we also know that extreme heat does correlate with spikes in physical assault in general, and domestic violence in particular.

Anecdotally, we also know to expect increased incidents of road rage, and more arguments and fights on the street, in bars, and in the kitchens and back bedrooms across from your own rear window. Oh, and we’re sure to see a sampling of Ten Ways to Beat the Heat stories, some of which may be more useful than others, although these lists sometimes carry roughly the same depth and gravity as household redecorating tips.

Beyond the headlines, heat waves affect all of us in ways that are both obvious and unseen—and potentially dangerous. And if extreme heat poses health risks to relatively healthy people, those risks are much more pronounced among the most vulnerable populations: the old, the young, and the chronically ill.

We’re all familiar with the term “seasonal affective disorder,” which refers primarily to symptoms that appear with the onset of winter, including depression, low energy, appetite loss, inadequate sleep, loss of interest in usually enjoyable activities, and so forth. While the causes of SAD are not fully understood, it is generally thought that the reduction in daily sunlight—and with it, the disruption of the internal body clock, and changes in the levels of brain chemicals—is a significant factor.

Some people, however, are more prone to “reverse seasonal affective disorder,” which switches the timing of the symptoms to the onset of summer. And people who don’t do so well with the heat and long days are going to be that much more affected by a heat wave. So are the vulnerable groups generally, especially the chronically ill, who make up over half the population—and are among the most susceptible to the risks of extreme heat, which can both exacerbate their symptoms and even worsen the underlying conditions.

It’s the Inflammation

Although extreme heat can harm us mentally and physically in a number of ways, the biggest culprit is inflammation, which can present in many different forms and affect everything from cognition to digestion to balance to your ability to get a good night’s sleep. And inflammation can cause pain wherever in the body it occurs.

How can we manage inflammation during a heat wave?

  • Stay hydrated—and limit things that dehydrate you, like caffeine and alcohol.
  • Exercise moderation, and employ sensible practices with sleep, food, hygiene, etc.
  • Try not to have big stress-inducing conversations. This isn’t the best time to pick an unnecessary fight with your spouse or make a life-changing decision like moving or changing jobs.
  • Consider looking at an anti-inflammatory diet. Google it and read up. An anti-inflammatory diet can help anybody—it doesn’t matter who you are or whether you have chronic illness.
  • Stick to your structures and routines. Prepare ahead of time: gas up the car, make sure you have your basic provisions, get enough cash out of the ATM. Whatever you do for a snowstorm, do for a heat wave.
  • Stay cool. If you have it, turn on the air conditioning. But don’t go to extremes–find the right temperature setting for your body. Set to the highest temperature that still keeps you cool. Draw the blinds. Use fans to circulate the air, but avoid setting them too close to you while you sleep.

Vulnerability Times Seven

Extreme heat, and the inflammation it causes, also affects us in more specific ways that relate to seven “functional capacities”* we all share: fatigue, pain, sleep, cognition, ambulation, mood, and gut. These capacities are negatively affected by a heat wave, and that goes for everyone—but especially the young, the old, and the chronically ill.

  • Fatigue may have little or nothing to do with the amount of sleep you get. You can have physical, mental, or emotional fatigue regardless of your sleep patterns—and inflammation affects fatigue too.
  • Inflammation can bring on pain anywhere in your body. And when the barometric pressure changes, that creates swelling—in the joints, in the gut, and elsewhere.
  • Heat waves disturb normal sleep patterns. The extra light in summer already affects circadian rhythms, and heat waves occur during the maximum light periods. Heat, humidity, and the inflammation they cause exacerbate the disruption.
  • As for cognition, there is some science to back up the popular understanding that people don’t think as well in the heat. People have more trouble finding words, focusing, what we might call “staying on point.” And it affects the short-term memory. You can’t find the car. People also are more prone to make careless (and potentially deadly) mistakes while driving.
  • Ambulation is affected by many things, notably, the inner ear. As we age, balance becomes more of an issue. Heat and inflammation can throw off balance, which affects walking and other types of movement, including going up and down stairs.
  • Heat waves affect mood. In extreme heat and humidity, all of these functions can act upon each other negatively. And regardless of or in addition to these factors, the brain experiences inflammation on its own. All of this makes us irritable. We’re hot and uncomfortable, and we’re not thinking well.
  • The gut is already having an inflammatory response, and the heat makes us want to eat less. We change our diet, not necessarily for the better, and we move and exercise less—all of which is a recipe for digestion problems.

Make It Easy on Yourself

You can manage your functional capacities during a heat wave without overwhelming yourself. Think about which capacities typically are your problem areas. Rank them, and work on one or two at a time. For example:

Sleep: Try to create a reasonable sleep schedule. Give yourself time to rest. Keep your room dark. Avoid overhead lighting. Give your brain the message that it’s time to wind down.

Cognition: Avoid mental activities that strain your brain. Minimize distractions so your brain can do the work it has to and then rest. Work for 40 minutes and then take a break. Calm your neurology.

Mood: Manage your mood by expecting the things that are likely to happen, so they won’t throttle you. Expect people to cut your off in traffic. Expect people to be cranky. Expect that you will be more emotional. If you’re vulnerable (and aren’t we all) to feeling low or anxious or unsettled, expect it and be ready to manage it.

*Fennell, P.A. (2012). The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Third Edition. Albany, NY: Albany Health Management Publishing.

Copyright 2018, Patricia Fennell and Stephen Leon

Heat Waves: The Hidden Dangers

By Patricia Fennell and Stephen Leon

When a summer heat wave settles over us like an oppressive shroud, we know what we can expect from the headlines. There will be warnings to stay inside in air conditioning, stay hydrated, and keep physical exertion to a minimum. There will be reports of hospitals taking in victims of heat stroke and heat exhaustion, and worse, grim stories of heat-related deaths.

We can also expect a spike in certain types of crimes, regardless of whether they make the headlines. Statistically, we know that some categories of crime do not fluctuate with the air temperature—but we also know that extreme heat does correlate with spikes in physical assault in general, and domestic violence in particular.

Anecdotally, we also know to expect increased incidents of road rage, and more arguments and fights on the street, in bars, and in the kitchens and back bedrooms across from your own rear window. Oh, and we’re sure to see a sampling of Ten Ways to Beat the Heat stories, some of which may be more useful than others, although these lists sometimes carry roughly the same depth and gravity as household redecorating tips.

Beyond the headlines, heat waves affect all of us in ways that are both obvious and unseen—and potentially dangerous. And if extreme heat poses health risks to relatively healthy people, those risks are much more pronounced among the most vulnerable populations: the old, the young, and the chronically ill.

We’re all familiar with the term “seasonal affective disorder,” which refers primarily to symptoms that appear with the onset of winter, including depression, low energy, appetite loss, inadequate sleep, loss of interest in usually enjoyable activities, and so forth. While the causes of SAD are not fully understood, it is generally thought that the reduction in daily sunlight—and with it, the disruption of the internal body clock, and changes in the levels of brain chemicals—is a significant factor.

Some people, however, are more prone to “reverse seasonal affective disorder,” which switches the timing of the symptoms to the onset of summer. And people who don’t do so well with the heat and long days are going to be that much more affected by a heat wave. So are the vulnerable groups generally, especially the chronically ill, who make up over half the population—and are among the most susceptible to the risks of extreme heat, which can both exacerbate their symptoms and even worsen the underlying conditions.

It’s the Inflammation

Although extreme heat can harm us mentally and physically in a number of ways, the biggest culprit is inflammation, which can present in many different forms and affect everything from cognition to digestion to balance to your ability to get a good night’s sleep. And inflammation can cause pain wherever in the body it occurs.

How can we manage inflammation during a heat wave?

  • Stay hydrated—and limit things that dehydrate you, like caffeine and alcohol.
  • Exercise moderation, and employ sensible practices with sleep, food, hygiene, etc.
  • Try not to have big stress-inducing conversations. This isn’t the best time to pick an unnecessary fight with your spouse or make a life-changing decision like moving or changing jobs.
  • Consider looking at an anti-inflammatory diet. Google it and read up. An anti-inflammatory diet can help anybody—it doesn’t matter who you are or whether you have chronic illness.
  • Stick to your structures and routines. Prepare ahead of time: gas up the car, make sure you have your basic provisions, get enough cash out of the ATM. Whatever you do for a snowstorm, do for a heat wave.
  • Stay cool. This is why God made air conditioning. But don’t go to extremes–find the right temperature setting for your body. Set to the highest temperature that still keeps you cool. Draw the blinds.

Vulnerability Times Seven

Extreme heat, and the inflammation it causes, also affects us in more specific ways that relate to seven “functional capacities”* we all share: fatigue, pain, sleep, cognition, ambulation, mood, and gut. These capacities are negatively affected by a heat wave, and that goes for everyone—but especially the young, the old, and the chronically ill.

  • Fatigue may have little or nothing to do with the amount of sleep you get. You can have physical, mental, or emotional fatigue regardless of your sleep patterns—and inflammation affects fatigue too.
  • Inflammation can bring on pain anywhere in your body. And when the barometric pressure changes, that creates swelling—in the joints, in the gut, and elsewhere.
  • Heat waves disturb normal sleep patterns. The extra light in summer already affects circadian rhythms, and heat waves occur during the maximum light periods. Heat, humidity, and the inflammation they cause exacerbate the disruption.
  • As for cognition, there is some science to back up the popular understanding that people don’t think as well in the heat. People have more trouble finding words, focusing, what we might call “staying on point.” And it affects the short-term memory. You can’t find the car. People also are more prone to make careless (and potentially deadly) mistakes while driving.
  • Ambulation is affected by many things, notably, the inner ear. As we age, balance becomes more of an issue. Heat and inflammation can throw off balance, which affects walking and other types of movement, including going up and down stairs.
  • Heat waves affect mood. In extreme heat and humidity, all of these functions can act upon each other negatively. And regardless of or in addition to these factors, the brain experiences inflammation on its own. All of this makes us irritable. We’re hot and uncomfortable, and we’re not thinking well.
  • The gut is already having an inflammatory response, and the heat makes us want to eat less. We change our diet, not necessarily for the better, and we move and exercise less—all of which is a recipe for digestion problems.

Make It Easy on Yourself

You can manage your functional capacities during a heat wave without overwhelming yourself. Think about which capacities typically are your problem areas. Rank them, and work on one or two at a time. For example:

Sleep: Try to create a reasonable sleep schedule. Give yourself time to rest. Keep your room dark. Avoid overhead lighting. Give your brain the message that it’s time to wind down.

Cognition: Avoid mental activities that strain your brain. Minimize distractions so your brain can do the work it has to and then rest. Work for 40 minutes and then take a break. Calm your neurology.

Mood: Manage your mood by expecting the things that are likely to happen, so they won’t throttle you. Expect people to cut your off in traffic. Expect people to be cranky. Expect that you will be more emotional. If you’re vulnerable (and aren’t we all) to feeling low or anxious or unsettled, expect it and be ready to manage it.

*Fennell, P.A. (2012). The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Third Edition. Albany, NY: Albany Health Management Publishing.

This post also appears on the website for Albany Health Management Associates, Inc.

Copyright 2018, Patricia Fennell and Stephen Leon

 

Confronting the Silence

Albany activist Shirey Archie wants more Americans—especially those in the “silent middle”—to stand against racism by acknowledging the pain of our national history

By Stephen Leon

“I have a 13-year-old son,” says Shirey Archie. “I have a black male child in a society that doesn’t do well with black male children. And when he was born, I realized I had inherited a big responsibility.”

I ask Archie (that’s his last name, and the name most commonly used by his friends and co-workers) if he has given his son “the talk.” He smiles knowingly, but instead of answering directly, he tells me a story, leaning in a little, his eyes fixed directly on mine across the top of my laptop screen.

“I came home one night,” he says, and his son was waiting for him. “He said, ‘Dada?’ I didn’t answer. He said, ‘Dada?’ I didn’t answer. “He said, ‘Dada, is that you?’ ”

“I said, ‘No, it’s not me,’ and I said it again, and then he said, ‘Why is it not you?’

“And I said, ‘Because I had an encounter with the police, and I’m not here.’ ”

Archie had gone out to buy Chinese food, and when he got back into the car, he forgot to turn on his lights before pulling away. He realized it and switched them on, but now a squad car was flashing its lights behind him.

The officer asked if he had forgotten to turn on his lights, and Archie politely explained that he had. Nothing came of the encounter.

“But here’s the thing,” he says. “It could have gone any number of ways. Depending on him, depending on me. And for a lot of people, it’s gone badly.”

To drive home his point, he tells a variation on the original story, like a filmmaker retracing the action but altering details to show a different outcome.

“Scene two: ‘Dada, is that you?’ ‘No, It’s Mama.’ ”

“Where’s Dada?”

“He had an encounter with the police.”

***

Shirey Archie is an eligibility examiner for the Albany County Department of Social Services, but he’s not interested in talking to me about his day job, and nudges me to move on by answering my question with a single word: “paperwork.”

We are here today, at a coffee shop in Albany, to talk about the other work he does, work he does not get paid for, work he believes in but whose effectiveness he has no way to measure.

“I have a sign in my car that says, ‘Stand Against Racism.’ ”

Archie stands and holds up the sign on street corners; lately he’s been standing once a week at the corner of Watervliet and Central avenues in Albany. For the people who ask to stand with him, he designated one day a month for them to join him.

The responses from passing drivers, he says, “range from horn blowing [widely understood to signal approval] to yelling the ‘N’ word, or ‘Get a job.’ ”

“The most significant to me is neither of those,” Archie says, “It’s the silence. I’m of the opinion that people like me in the liberal population think there are more people on our side than there really are.”

“If somebody goes by and honks,” he continues, “you have a general idea what they think. If somebody yells ‘Get a job,’ you have a general idea what they think. But if they’re silent, I have no idea.”

And it’s “the silence in the middle” that bothers and confounds Archie the most.

***

As his son comes of age during a time of palpable racial tension, Archie—who was born near Bill Clinton’s hometown of Hope, Ark., and raised in Niagara Falls, NY—reflects on how much has changed in his own lifetime, and concludes, not much.

He compares the lynchings of yesteryear, in which white supremacists in white robes and hoods killed innocent black men with no consequence, to the police shootings of today, in which men in blue uniforms kill innocent black men with no consequence.

“Race is the problem,” he says. “And my question is, how do good people allow this to happen? How can you sign on to your church creed and allow this to happen?”

Pressed to clarify what he means by “allow this to happen,” Archie says he is referring both to the election of Donald Trump—which emboldened white supremacists to voice their racism more aggressively—and more broadly, to a society that just can’t seem to make the issue a priority.

“Someone gets shot,” he says. “There’s a huge protest about it. Thousands of people show up in thousands of places. A week later, you can’t find two. Why? Because there’s no commitment to it.”

“For me, it’s not an issue. I live it every day.”

But he needs support, he says. He needs the support of the silent middle. He needs more people to do the mental work it takes to really understand what’s going on and do something about it.

“People don’t sit down and take a hard look at themselves,” Archie laments. “If they do, and they come out the other side, they’re committed. If they do the hard mental work and decide it’s not for them, fine. But it’s the people in the middle. The silent ones. I need an answer.”

We talk about various things people do to make themselves feel better: attend a protest, post about the issues on Facebook.

And of course, just feeling better isn’t enough. “You gotta feel bad before you feel better,” he says. “Come feel bad with me for a little while!”

He laughs at the way that sounds. Then his face turns serious again.

“The truth is, if you can’t look at our history, and really feel the pain of it, then you can’t come out of that with the energy you need to deal with it in the present.”

“It’s not an intellectual exercise. It’s not a dissertation. It’s not a term paper.”

***

Archie does another kind of volunteer work, although he doesn’t consider it work so much as a responsibility to pay it forward. Having gone through his own dark times earlier in his life, he now helps people who have experienced similar troubles.

“I’ve been in recovery for 35 years, in 12-step programs,” he says. “After all this time, it’s simply a part of who I am. I don’t think I specifically make an effort to help.”

Archie describes “a period of time when I when I behaved badly, toward myself and others. This was primarily due to drinking and other forms of substance abuse. With a lot of help, I stopped the active abuse. With a lot more help, I am working on the changes necessary to stay sane and ‘sober.’  For me, not using has revealed how damaged I was before I ever drank.  A lot of people relate to that.”

Archie’s claim that he doesn’t consciously try to help others comes across as characteristically modest understatement.

“I go to meetings. I share my life experience with people I meet when they ask.”

“I’m pretty straightforward,” he says. “People can be naive about the power of substances and how it changes folks’ behavior. And I simply try to clarify, as an end user. But not as an expert—just based on my experience, and willing to share without much reservation. Some people would rather not, but [if] you ask me a question, you’ll probably get an answer.”

“Being sober for me pushes that central responsibility. I could easily say to someone, ‘Take care of yourself, kid.’ But I couldn’t do that and consider myself a sober person at the same time.”

***

For Shirey Archie, a black man raising a black male child, a lot of thought goes into how to respond to words and situations that might be provocative, or hurtful, or hostile—and how to convey those lessons to his son.

He describes how he would take him to the Bethlehem Public Library, and how there was a young white girl who became his friend and played Minecraft with him. “And so I had to say to him that it would be possible that some group of boys might say something inappropriate to him, and that he had to know beforehand how he was going to respond, so [nobody would] get hurt.”

Thinking about this, Archie recalls another moment that took place in Delmar, at a peace vigil. The people taking part in the vigil, as well as the passersby, were mostly white. Archie was holding a sign that said, “War is not the answer.” A couple walking down the sidewalk approached him, and the man said, “What about the Civil War?”

Archie’s response was, “No war’s a good war.”

But he went home and thought about the other things he could have said.

“Part of the challenge,” he says, “when someone says something to me, I need to be careful how I respond. I need to be a little bit better than the comment.”

He talks about the hostile comments his son might hear, the tense situations he might face, the encounters with the police that might turn confrontational. Then he asks rhetorically, “Is that fair?”

Of course not. But it’s real.

“So what are we going to do about it?”

Archie raises his hands to the level of his head. “Nothing changes if we don’t put it up here.”

Then he lowers his hands until they’re out of sight—like the silent middle.

“But we keep it down here.”

***

Copyright 2018 Stephen Leon

This post also appears on the blog at the website of Albany Health Management Associates, Inc.

Languages Spoken Here: English, Sign, Chess, and Compassion

In poor Ugandan villages, Ann Fantauzzi and the Giving Circle help build schools, clinics, and hope

By Stephen Leon

Ann Fantauzzi and her group of volunteers with the Giving Circle had just finished an “activity day” in a Ugandan village, working with local children. The day went smoothly enough, but as the bus was about to take the visiting workers back to their hotel some miles away, Fantauzzi experienced the emotionally wrenching side of working in one of Africa’s poorest regions.

“We all got on our bus to go back to our hotel,” Fantauzzi recalls. “The bus had to back down the road to turn around and drive out.”

The bus came to a sudden halt, and Fantauzzi wasn’t sure why. “And I’m sitting in the back of the bus, and looking out the window, and a father was walking down the road cradling something in his arms. And as he got closer, I could tell it was a child, and the child was dead, wrapped up. There was a procession of eight or nine people behind him. I said to somebody, ‘That’s a dead child.’ It just hit me. I’m a new grandmother, and I couldn’t fathom it.”

In a Ugandan village where food and water are scarce and mere survival is a daily challenge, babies and children die with a regularity that people from affluent countries can scarcely imagine. For volunteers experiencing life in this part of the world for the first time, the reality is jarring.

“Why do we choose to put ourselves in emotional and physical harm’s way to serve others?” asks Patricia Fennell, a consultant for the Giving Circle who also has served as director of volunteers for St. Peter’s Hospice in Albany. “Nobody does this work unless they have to. Because when you choose to do this, you will be changed. It’s going to change you. And change can be painful.”

***

The record-breaking 2005 hurricane season included three of the top 10 most intense Atlantic hurricanes ever recorded: Katrina, Rita, and Wilma. The destruction caused by these storms in Louisiana, Texas, Florida, and the Yucatan Peninsula inspired Mark and Kelly Bertrand to create the Giving Circle and help with hurricane relief efforts. Based in Saratoga Springs, New York, the nonprofit, all-volunteer organization prides itself on having no political or religious affiliation, focusing solely on service. Its stated mission: “To seek out communities in need and connect them with those with the resources to help.”

The volunteers pay their own expenses. The Giving Circle pays for insurance and bookkeeping; the rest of the money raised goes directly into programs.

The group works locally, helping underserved residents of Saratoga Springs with services such as Code Blue, an emergency homeless shelter; nationally, sending volunteer relief teams to areas hard hit by hurricanes and other deadly storms; and internationally, building schools, health and birthing clinics, and orphanages, and working on projects as varied as farming and teaching children to play chess, in Uganda and Afghanistan.

Coincidentally, Fantauzzi, who had then just retired from 34 years teaching in the Saratoga public school system, also traveled to Florida in November 2005 to help with relief efforts after Hurricane Wilma. She was not yet connected to the Giving Circle, but she had begun a journey in volunteerism that would soon take her to Africa, and eventually, to a chance meeting in Saratoga with Giving Circle founder Mark Bertrand.

***

Moses Wambi and Kelly Bertrand

Ann Fantauzzi was born and raised in the Syracuse area, graduated from the State University of New York at Cortland, and did graduate work at Syracuse University and the University of Connecticut before receiving a master’s in educational administration from SUNY Plattsburgh. She taught third grade for one year in Cazenovia, New York, before moving to Saratoga and teaching in the local schools.

In the early ’90s, Fantauzzi joined the Glens Falls chapter of Habitat for Humanity and helped rehab five houses in the area. She continued to be driven toward volunteerism and helping others, among other things, arranging school trips to Russia and other foreign countries. She credits her husband, Damian Fantauzzi, with always being supportive of her volunteer work. “I am very lucky,” she says, noting that not all spouses are so patient. “When he sent me off to Cuba, he thought he’d never see me again.”

Some years later, Fantauzzi began sponsoring a young girl in Uganda so that her parents could send her to school.

In November 2005, after doing hurricane relief in Florida, she flew out to Washington State to be with her brother, Doug Lamoreaux, who was dying of cancer. He was a professor of education at Pacific Lutheran College, and Fantauzzi had become good friends with his colleagues. Lamoreaux had done student exchange programs in Norway, and one of his colleagues did one in Namibia.

After Doug passed away on New Year’s Eve, 2005, Ann was invited to join a group traveling to the sparsely populated country in southwest Africa. She went back to Namibia two more times, helping student teachers get their programs up and running.

In 2010, Fantauzzi and Patricia Fennell wrote three papers on chronic illness in children, with plans to present them at a conference in Namibia. Fennell couldn’t make the trip, but Fantauzzi delivered the papers at the conference.

She could have flown home, but she had an urge to meet the girl she was sponsoring, whose name (last name first) is Gonzo Tracey. Fantauzzi flew to Uganda instead, and stayed at the AOET (AIDS Orphans Education Trust) house. Her driver took her 20 minutes from there to where Tracey lived, where most of the houses were made of mud and cow dung. Her mother, father, and five children lived in a one-room house with a dirt floor. Her father had been disabled in a truck accident and could not work.

“That was the first time I really realized what education meant to these kids,” Fantauzzi says. “They had nothing. They were so grateful that her daughter was going to school. Her mother got down on her knees, kissed my hands, and said, ‘Thank you, thank you, thank you.’

And I said, “We’ll get her through high school.”

Fantauzzi made one more trip to Uganda with AOET the next year, and when she came home, she made a presentation about her trip in Saratoga. Mark Bertrand was there. After doing her talk and showing pictures, “I sat down, and Mark leaned over very quietly and said to me, ‘I want you to come to Uganda with the Giving Circle and do an education project.’”

***

“My mother and father were very much volunteer people,” says Ann Fantauzzi. “My brother and I were both adopted. They gave us a good life and an education.”

Still, like so many adopted children, she became driven to uncover her roots.

“Much of my adult life I have been trying to find my birth mother,” Fantauzzi says, and she did find her ten years ago. Her own experiences have fueled a more general concern for adopted and abandoned children. “I’ve seen so many orphans in Uganda, and I feel for them.”

Uganda was one of the countries hardest hit by the AIDS epidemic, leaving behind countless orphans. Many are absorbed into other families, but the numbers are daunting. One of the Giving Circle’s projects there was building an orphanage.

The Giving Circle also received funding from Soroptimist (a global volunteer organization dedicated to improving the lives of women and girls), which they used to build a birthing clinic, staffed with a midwife, in the village of Kagoma Gate near the town of Jinja, the two places where the organization does its Uganda work.

Fantauzzi also talks of the unusually high number of deaf children, which she attributes to malaria and the treatment for malaria. In Uganda, she discovered, many deaf children are referred to as “idiots” and are abandoned by their parents. The Giving Circle coordinated services for deaf children, as well as training for sign teachers.

Now, she says, Jinja has a bilingual school: “English and sign.”

Deaf children who were brought to the school were scared when they arrived, she says, because they had never had been treated like human beings before. Now, the kids all play together.

In 2011, when the Giving Circle was working in Jinja, Bertrand was invited to visit “the forgotten people of Kagoma Gate,” Uganda’s poorest village.

“Mark went in there in 2011,” Fantauzzi says. “He said it was one of the worst places he had ever seen. He said there was no clean water, no sanitation. Lots of babies died.”

And the village had no school. “The government said they’d supply the teachers if we built a school. We built a brick-and-mortar school with online donations of $5 bricks. The school had three rooms for primary 1, 2 and 3. We helped them paint it, but [local workers] built it.”

Overseen by the Giving Circle’s Uganda team leader, Moses Wambi, and engineer/designer Emmanuel Walubi (“Emma”), the Ugandan team built the school and all the desks, all supported by donations. Everything was ready—except they had underestimated the number of children who would walk in, not only from Kagoma Gate, but also from nearby villages. “There were more than a hundred,” recalls Fantauzzi.

“Mark said, ‘I want to build more buildings.’ So we built four more classrooms. Now they have primary 1 to primary 7, and also kitchens to feed them.” The Giving Circle also equipped the school in Jinja with a kitchen; children who come to the schools get two meals a day.

Both schools teach kids in grades 1 through 7; the Jinja school is integrated with deaf and disabled children.

“My dream is to have libraries in both schools,” Fantauzzi says. “We’re teaching kids to read, but they don’t have anything to read.”

With the Giving Circle, it’s not hard to imagine this happening.

Fantauzzi mentions a disabled boy whose grandmother was carrying him around on her back. “We got him into school, we got him a wheelchair for school, and we got him one for home,” she says.

“These are the things that really make this such a good thing to be doing.”

***

And somehow, the Giving Circle’s work helping improve the lives of people in Jinja and Kagoma Gate led Fantauzzi to the game of chess.

“I read a book called The Queen of Katwe,” Fantauzzi recalls. “Katwe is probably the most impoverished area in Kampala [Uganda’s capital]. “I was so inspired by it. … It was about this man [Robert Katende] who was a national soccer player, and a math teacher, and a chess player … [and] he believed that chess was such a worldly opportunity for kids.”

Katende believed that playing chess taught a variety of useful life skills, and he started running a chess drop-in program in Kampala as part of his Christian missionary work. At the sanctuary where he taught chess, Katende would have food for the children, which proved to be a big draw.

“So this little girl, Phiona [Mutesi], was selling corn on the street,” Fantauzzi says of the book’s heroine. “And she heard about [the drop-in], and she followed her brother there, and found out they were giving food. And she was hungry. … Robert had her come in, and he introduced her to the game.

“It turned out she was a prodigy. She picked it up very quickly, and she was beating the boys.”

Katende realized Phiona was a gifted player, especially when she started beating him. He took her outside the slums to complete against privileged players from boarding schools and universities. In 2007, at about age 11, she won the Uganda women’s junior championship, and took the title the following two years until the Uganda Chess Federation ran out of money to stage the event.

Crucial to success in chess is the ability to see many moves ahead, and Phiona is said to be able to see as far ahead as eight moves. She is particularly fond of “queening”—when a pawn survives all the way to the other side of the board and becomes a queen—and draws parallels to her own life.

Katende continued to coach Phiona, and took her to her first major international competition, in Siberia, where she got the attention of journalist Tim Crothers, who wrote a piece on her for ESPN. Crothers published The Queen of Katwe in 2012, which was adapted for a Disney movie released in 2016.

Phiona Mutesi eventually won a scholarship to attend Northwest University in Kirkland, Washington.

(l-r) Phiona Mutesi, Mark Bertrand, Ann Fantauzzi, Moses Wambi, Robert Katende

Sensing an opportunity for the children of Jinja and Kagoma Gate, Fantauzzi e-mailed Crothers and told her about the Giving Circle’s work, and that she loved what Robert was doing, and that she’s like to do something like that.

“So, my email to Tim was forwarded to Robert in Uganda,” she says. “And Robert contacted me within 48 hours. And he said, ‘Chess would be so good for them, I’ll help you out in any way I can.’”

Fantauzzi learned that Katende was at a conference in New York City, and hopped on a Metro North train in Poughkeepsie in the wee hours on the morning Katende was to depart for home, so she could have a breakfast meeting with him. “He said, ‘Let’s Do something.’”

Fantauzzi secured a stipend and gas money for Katende to drive from Kampala to Jinja and run a program. “We had wonderful results,” she says. “Academically, we thought there was an impact.”

Katende took them to tournaments. At one in Kampala, they all got to meet Russian grandmaster Garry Kasparov. They stayed overnight in the capital. The kids had never been out of the village, never been in a car, never seen stairs, never seen flushing toilets, Fantauzzi says.

“They flushed the toilets all night long.”

And Kagoma Gate now has its first champion, a girl about 13 years old, a top student who went to the Ugandan national championship tournament and won a gold medal. The girl, whose name is Lucky, also won a scholarship dedicated by Fantauzzi.

“She said, ‘I want to be like Phiona.’”

I tell the kids: “Chess is a global language. You can go to any country and find chess players.”

***

“Uganda is not someplace you go for a vacation,” Fantauzzi says.

And when it’s time to come home, reentry can be difficult.

Patricia Fennell: “Volunteering in the Third World is like hospice work, is like [a tour of duty in the armed forces]. You are a band of brothers and sisters doing this work. … A veteran coming home is not unlike a volunteer returning from the Third World.”

Some people come home, Fennell says, “and they’re traumatized by what they went through. … They have trouble eating. They have trouble going out and shopping.”

“You come back from spending two weeks with families and children who don’t have close to what you have,” Fantauzzi adds. “One of the things I’ve heard people say is it’s hard to go into a grocery store and see so much food.”

“I have a greater sensitivity now to wasting water and wasting food,” she continues. “The kids [in the Ugandan villages] have to get the firewood and the water. In our village, kids will walk miles, hours to get a jerrycan full of water and struggle to carry it back. And that’s their water for the day.”

For dedicated volunteers like Fantauzzi, there’s no question that it’s worth it. “It’s a good feeling to know that work that I personally have done for them has gotten them an education,” she says. And the girl who won her scholarship, Lucky, “is not going to get sold.”

And thanks to the clinics the Giving Circle has built and staffed, Fantauzzi says, “In the last year, we have not lost any babies.”

***

Copyright 2018 Stephen Leon

This story also appears on the blog at albanyhealthmanagement.com, the website of Albany Health Management Associates, Patricia Fennell, president.

Feeling It

Capital Region artist David Drake doesn’t start with a plan, but goes wherever his pencil and brush strokes take him

By Stephen Leon

One of David H. Drake’s Facebook friends, commenting on a painting of his, posted: “What feeling did you want to evoke in this?? I see frenzy and chaos.”

Good luck trying to get Drake to offer specific motivations and intentions for his artwork.

“It really isn’t an issue of intention,” he replied on the thread. “It is not about intending … It’s more about what is there and what I can do with it.”

He might have just left it at that, and probably wishes he had.

“It started out as a sort of exercise in improvisation that evolved into something very landscapish … at least to my sense,” wrote Drake, a resident of Catskill, New York, who has an upcoming show in Hudson. “I very much like the chaotic feeling that comes from all the apparent indecision and ambiguity … but I also like the resolution that comes as its final state evolved out of what were just squiggles and patience!!! (Oh God … I am talking artspeak … Please ignore this.)”

In a recent interview, Drake refrained from such elaborations, talking more about the process of making his paintings and pencil drawings, and less about his intentions or any meanings hidden behind the lines and squiggles and stenciled forms that populate his work. The lines and squiggles sometimes stand on their own with no apparent representation, although they can morph into objects that look recognizable, like fish. Sometimes, especially on the larger painted canvasses infused with oranges, yellows, and greens, you might see stenciled insects such as bees or moths (he makes little distinction between the two) or larger animals that might be cows or buffalo. One painting features stenciled images of doors and windows, as well as some lines of text, but the cumulative effect is ambiguous—as he seems to prefer.

One pencil drawing does appear to be an overhead representation of a couple of houses, driveways, and streets in a residential neighborhood, as the forms become apparent between otherwise ambiguous sets of back-and-forth pencil strokes. Drake allows that this might be the neighborhood he grew up in, or his interpretation of it, which he arrived at because he had done a series of drawings of nothing in particular, and suddenly they reminded him of his childhood house.

“People ask, ‘What were you looking for?’” he says. “As Picasso said, I don’t show you what I’m looking for. I show you what I found.”

***

David Drake was born in Miami, Florida, but grew up in suburban Cleveland. As a kid, he had a fair amount of exposure to the arts; his grandparents took him to the opera when he was 10, and there were plenty of public-school trips to art and natural-history museums, and classical-music concerts.

He didn’t take an art class until he was a senior in high school. Until then, he says, he had not been a good student, but was inspired by his art teacher; “she was very supportive” … and he found “it was something I really liked doing.”

“In some odd way,” he adds, “I think I picked art because it wasn’t going to be easy for me.”

He went on to study at the Cleveland Institute of Art, where he completed the five-year program that included having his own studio on campus during the fifth year, where he fulfilled the requirement to create a show for public viewing and faculty critique at the end of the year.

While earning his degree in printmaking, Drake had a couple of other significant experiences in college. He learned how to wait tables and bartend, skills that carried him through the financial ups and downs of life as an artist (currently he bartends at the restaurant Rive Gauche Bistro in Athens). And he met the woman who would become the first of his three wives.

They married and moved to Ireland, where she was promised a job in her field (ceramics); when that didn’t pan out as expected, they moved back to the States, but the disruption put enough stress on the relationship that they divorced after three years—although they remain friends to this day.

Drake moved to Chicago in 1980, where he met his second wife, with whom he was soon raising a family of three children. But they, too, divorced, in 1989.

They were living at the time in Vermont, where Drake stayed until 2004—even though he found the artistic climate there surprisingly frustrating, largely because of what he describes as New Yorkers’ two-tiered tastes in art.

“If it doesn’t have a barn or a covered bridge,” he says, the weekending New Yorkers aren’t going to buy it; they buy their “real” art in New York City, and the quaint stuff up in Vermont.

In 2008, Drake met the woman who would become his greatest inspiration in life and art, Enid Advocate.

Their years together “probably were the most productive years of my life,” he says. “She was the one person where I felt truly comfortable … if she was sitting in my studio and I was working.”

“She was an unabashed cheerleader for me at the time,” he continues, and she had “an incredible visual sense for someone who had no formal training.”

Enid and David lived together for five years and decided to get married in 2013. Then one day in 2014, she went to see a doctor because she wasn’t feeling well. After that, Drake says, “each day’s news was worse than the last.” She died three weeks later.

“She always saw the best in me,” he remembers wistfully. “I would not be here without her.”

***

One of Drake’s mentors once told him “not to draw the line until you see it.”

But Drake prefers not to plan; rather, to improvise, to start something before he knows what it’s going to be.

“Be present to do something,” he says, “but go in with as little of a plan as possible.”

He elaborates, musing that his approach to art also can apply to life. “I think of it as a way of mapping things, and how we map things largely determines the landscape we will work in and with, the limit of the landscape we will create. The minimizing of plan is a matter of being open and receptive. …The will is still certainly at work—I want to create—but one needs to recognize all the much larger things that are at work. … All in all, it is a pretty good metaphor for life, especially if life chooses to cooperate.”

Having studied printmaking in college, Drake says, “I don’t think like a painter. I think like a printmaker.”

And printmaking is more a drawing process than a painting process, which “makes what I generally do different from what painters generally do … I really like the process of drawing.”

He likes when other artists leave clues to their thought processes, and he does it too—like when he decides to move a line that he has drawn in pencil, creating a sense of motion because you can still see the pale shadow of the old line. “You can erase a line, but it leaves a ghost.”

The content of his paintings and drawings, he says, are “always ambiguous in my mind.” In the interview, he talks about drawing as a way of interpreting the world, and the importance of “feeling” what you are drawing as it comes to life in whatever form. So the art is not about what it represents, but what it feels like.

He mentions the philosopher Susanne Langer, who wrote, among other things, that “art is the articulation of feeling.”

Asked what would be the best compliment someone could make about his work, Drake pauses for a moment, then answers:

“When somebody wants one of my pieces, because they like what it represents to them, they like what I’m doing, that they appreciate how I look at the world.”

***

David Drake will have a show from June 16 to July 8 at the Davis-Orton Gallery in Hudson, featuring roughly ten of his pencil drawings, and two larger, painted canvases.

Copyright 2018 Stephen Leon