An otherworldly pizza and the inadvertent discovery of a gift for cooking

This piece was supposed to be about a chef in a New Haven restaurant spotlighting a favorite dish which in this case was a butter chicken pizza.

It turned out to be so much more.

Briefly: A week after Bryan Burke got his drivers’ license, he took a job delivering pizzas. When he wasn’t delivering, he was washing dishes. One day, someone called out “Hey Bryan, we need you to make salads!” He learned that, and learned to make pizza dough, and how to stretch pizza, and on and on. The kitchen, he found, was “the ultimate refuge for misfits.” As for food, it was an endless source of fascination. Enjoy.

https://www.newhavenindependent.org/index.php/archives/entry/todays_special_bryans_butter_chicken_pizza/

The fragility and preciousness of health at an uncertain time in our world

(I posted this on Facebook a few days ago.)

I found the zinnias and marigolds pictured below on my deck this morning. My mother left them there.

Exactly 18 years ago at this time, I was lying unconscious in my Upper West Side apartment. It was a Monday. I had been there since suffering a massive seizure sometime early Saturday.

Later today, I'll call and thank my stepmother, as I have every year since, for finding me on the floor of my bedroom early that afternoon. Thank you, I'll say, for doing what you did; as she well knows, I likely wouldn't have made it much longer. And she'll say, as she does every year, that she's just glad I'm healthy and doing well.*

But right now, if I may, I'd like to acknowledge Phyllis Bennett Kennedy, a woman I met at a reading in West Virginia last July. She had just experienced that bolt of terror on learning that something deadly was growing inside her--like me, a glioblastoma multiforme, the most aggressively malignant form of brain cancer--the kind of news to which nothing compares.

Just as I did, I imagine, 18 years ago, she appeared pale and a bit destabilized. But she also had a determined look about her which I loved.

Over the past year, Phyllis, along with Miggy Lynn and NoOne Fights Alone and Shauna Pendleton, among many others, have eloquently reminded me that, in a world that's seemingly off its axis, it's so easy to forget the fragility, the preciousness, of health, and how quickly it can be stripped away, and how nothing is assured, except keeping going, or trying to.

So may I offer my thanks to them, and to my mom for the flowers, and to everyone else for reading this.

*Update: I called my stepmother at 6 pm. She said the same thing. She also said, as she does each year, that there's no need to call each year. And then I said, as I do each year, that I'm going to keep calling her each year because I can never thank her enough.

A 55-mile odyssey on the roads around Boston

I didn't complete the 64.2 mile course of the Boston Brain Tumor Ride on Sunday, May 15. I did 55.

Before I relate what happened, let me say that I was more than a little nervous about the ride. There was the sheer distance, which freaked me out. There was my bike, which I have never liked, with its light, sleek, and unstable frame; the clipless pedals, which I had never quite mastered; the spindly tires. There was the weather: low-50s cool and impossibly windy. And the first 20 miles: my legs felt stiff, my body sluggish; my bike jounced wildly on the rough, rutted roads. What was I thinking? I asked myself. Could I still turn around?

Then, something clicked. For the next 25 miles, it was glorious. I was flying down hills, coasting up them. I was growing stronger and stronger. All at once, it seemed possible. My team was feeling it too. As we took to the roads after the last rest stop within 20 miles of the finish, our captain Amy Stevens had three words of encouragement for us. LET'S DO THIS.

So we did. At least for 10 miles. Until I heard someone calling out my name. I had missed a turn. The wind had blown down a sign. Or had it? Six of us found ourselves standing on a highway, tantalizingly close to the finish, with no idea how to get there. Siri was of no help. Nor was Google Maps.

Finally, we settled on a route that hugged the Interstate. It was unconventional, to be sure, but whatever. We'd get there. So off we went again, our little band, riding for those we knew and loved, whom we had watched suffer, riding so fewer would have to suffer as well.

Then came a loud pop like a gunshot. It was my back tire. It had blown out. And then it dawned on me. The ride was over. I would not complete it.

I felt downtrodden. I felt as if I had let a lot of people down. I did on the drive home and later that afternoon when I unpacked my bags.

And then last night it struck me. What happened wasn't so different from how people navigate any kind of illness or struggle. You start off feeling fragile, a bit uncertain of your bearings, without a clue as to what lies ahead. And then you just do it. You go. There are transcendent stretches, when you feel more alive than you ever have. And then there are forces entirely out of your control that trip you up on your way and leave you on the side of the road, frustrated, dispirited, defeated.

And then what? You don't give up. You find a sturdier bike that suits you. You find thicker tires. You try another course. You try again because each time you try, the better the chance for kinder weather. It's the trying that matters, that makes us who we are, no matter what happens next.

A story that's far from over: Vince Guglietti and his path to the Major Leagues

At 7:05 a.m. on Friday, May 13, the Gateway Grizzlies open their season against the Washington Wild Things. The site: GCS Ballpark in Sauget, Illinois. On the roster: Vincent Guglietti, a strapping 6’5” 230-pound first baseman from East Haven, CT.

It isn’t where Guglietti expected to be last June as he wrapped up a spectacular career at Quinnipiac College, helping to transform a basement-dwelling MAAC conference school into a perennial title contender.

Half the teams in Major League Baseball had contacted the smooth-fielding first baseman. All of them had seen his explosive swing. Seattle and San Diego had shown particular interest.

No surprise. Guglietti had boasted a career average of .307 at Quinnipiac with 16 homers and 216 hits. His 105 RBIs were the most by any current player on the roster. In his senior year alone, he hit .330 with ten homers and 47 RBIs, leading the Division I MAAC conference in slugging and among the conference leaders in on-base percentage and total bases.

Not only that. For the past two summers, he had played in the New England Collegiate Baseball League, a showcase for top college-level players, earning notice from scouts from around the country and finishing runner-up to the eventual Player of the Year.

Above all was his work ethic. “He sets himself to a higher standard,” his college coach told the Quinnipiac Record. He had spent hours in the weight room and in the battle cage honing his swing. He had become a vocal leader for a young infield. “The kid has put in the work and has gotten himself seen.”

Area papers compared him to Connecticut-bred Major League players Matt Harvey and George Springer. “His consistency at the plate makes him a near-lock to be selected in June’s amateur draft,” the New Haven Register reported.

Then came June 10, 2015. The first two days of the Major League Baseball draft had come and gone; teams would be selecting players from round 11 through round 40.

That wasn’t unexpected. Vince had been told that he would be drafted between the 12th and 18th rounds. All day he waited for his phone to ring.

It didn’t, and this is where the story of Vince Guglietti really begins. It’s a story of steely determination and grit fueled by a quiet but abiding belief that his natural talent and hard work will eventually lead to the call that he didn’t get on June 10, 2015.

And it’s a story that’s far from over.

I.

Let’s go back to the summer of 2015, to those weeks after the June day Vince’s phone didn’t ring.

First he looked for answers. What he found was dispiriting. The scouts who had pushed for his selection were low in the organization. That didn’t matter if the big guys said no. The Phillies had him slotted high, he learned, but the higher-ups wouldn’t take a shot.

The reason: the product of working-class East Haven didn’t know the right people. He lacked the family connections with a scout high in the organization that might oil his way into even a lower-round draft pick.

Someone who scouted for the Braves in the 1990s told him that scouting today is different. Back then, if someone looked promising, he was in. Nowadays, you have to know people, he was told.

Even then, two threads that would run through Vince’s story were beginning to appear. One was the willingness of someone to go out on a limb to rectify Vince’s lack of connections—specifically, that former scout who offered to get him a tryout with the Texas Rangers and possibly the Houston Astors.

The other: Vince’s extraordinary belief in himself. “I wouldn’t waste my time if I didn’t know I could play,” he told me. “I have too much left in my tank to throw it away. I haven’t reached a level I know I can reach. I have a support system telling me not to give up. I’m not going to.”

(to be continued...)

 

Nirvana

Click for reservations (highly recommended) or for more Naan Kabab cuisine lore. 

Halloween, the Sin Sisters Band, and Me

The Sin Sisters Band, which I’ve “managed” for the last four years—I insert quotes because its members cannot be managed—has thrown a Halloween Party each of the last two years. This year will be no different.

I love this event for a host of reasons. For one, this is one party where everyone really cuts loose; it’s our party, after all, we produce it, so no one is saying when or which songs or how long or what to wear. Which allows for band members to be dressed like this.

The inaugural Halloween Party, in 2013, celebrated the Sin Sisters 25 years together; they met at Sacred Heart Academy, an all-girls Catholic school in Hamden, the story goes. 

We decked out the place with skeletons and broomsticks and pumpkins and other spooky-looking paraphernalia, as well as pictures of the Sin Sisters through the years. (The three Sin Sisters are wonderfully adept at interior decoration. Two of the three are also pack rats.)

It was wild. At one point in the spacious event facility where it was held, you couldn’t move. That’s how thick with people it was. There was shouting and laughter and tears and a lot of dancing. A lot. It was fun. It was magical. We believed it could not be topped.

We were mistaken. Which brings me to the another reason for my love of the annual party. The sheer creativity of the costumes. Feel your jaw drop as you behold this.

When the robot in the middle walked in—by the time this photo was snapped, he had separated himself from his robot outerwear and was boogie-ing on the dance floor—the crowd parted like the Red Sea. Everyone was awestruck, including Sin Sister Kathy (left), who’s dressed up as Miss Read and Sin Sister Patti, as Miss Demeanor. That’s why we give out prizes. It injects a little incentive for the Sinsisterheads to go all out.

Last year was a particularly memorable Halloween party for me. My little sister’s health had been declining for months so I was conflicted about attending; it seemed wrong to be joyously dancing while she was suffering.

Then again, there was no need to be at her bedside that night; she was heavily sedated and, what's more, had an aide attending her. And I was the band’s manager, or manager of the unmanageable, and I was tasked with collecting tickets at the door.

It wasn’t a job that could easily be outsourced: it involved not just taking tickets and giving change but ensuring no miscreant stole in through the bar. Someone else might not be so gung-ho at preventing this almost certain eventuality. To be perfectly honest, I was nervous about trusting anyone else to do it.

So I went. And, lucky for me, my mother agreed to go as well. Here we are posing while taking a break from collecting tickets.

And lucky for us, it was just the distraction we needed to take our minds--at least for a few hours--off my little sister.  

So there you have another reason that I love this event—and this band. Being around them—hearing their lively, make-you-dance-like-nobody’s-watching music—just makes everything seem alright.

Life Day

I posted the below on Facebook two weeks ago, on the morning of August 3, the occasion of my life day--which is to say, the day I was rescued by my stepmother after lying unconscious in my apartment for over two days; without her intervention, and given the escalating toxicity in my blood, I likely would have been dead within the next few hours.

Since I posted on that Tuesday morning, it's occurred to me that one of the gifts of my book being out in the world is that it's freed me to share this kind of milestone. And not just milestones. During the years I spent working on my book, I rarely talked about my illness, much less those fraught 46 hours. Maybe it was a matter of shame. Or it just never came up in the course of ordinary conversation. Or I felt it was too weighty a subject to drop.

Whatever the case, it's pretty cool to be able to talk about it now, and not only for myself, as both an opportunity to honor my family, as well as to relive the miraculous nature of that rescue and, indeed, my survival. It's also for the readers who, much to my pleasant surprise, have drawn strength, or motivation, or inspiration, from my story.

-----------

Exactly 17 years ago at this time--coincidentally, a Monday morning--I was lying unconscious in my Upper West Side apartment. I had been there since suffering a massive seizure sometime Saturday morning; of this none of my friends or family had any idea.

In about three hours, my stepmother would find me on the floor in my bedroom, near death, and have me rushed to a hospital.

Later today, I'll call and thank her, as I have every year since. Thank you, I'll say, for doing what you did; as she well knows, I likely wouldn't have made it much longer. And she'll say, as she does every year, that she's just glad I'm healthy and doing well.

My family has taken to calling August 3 my life day. But please no congratulations for me. I didn't do anything. Without my stepmother and my dad, and Anna Reisman, Cary Gross, and Marta Resnikov Reisman over that early August weekend, I wouldn't be here.

So may I offer my thanks to them and to everyone else for reading this.

Amby Burfoot

Amby Burfoot, the 1968 Boston Marathon champion, former Runner’s World magazine editor, and author, will be introducing me when I read from my memoir “5 Months 10 Years 2 Hours” at Bank Square Books in Mystic, CT on Sunday, June 28.

I’ve been looking forward to this for a while, and not just because Mystic is pretty much the most idyllic place to spend a Sunday afternoon in summer.

Amby was a major part of the 1970s running revolution that inspired my mother to lace up her Nikes each morning for a three-mile run before work. (She’s still going strong, by the way, at 75.) She in turn got me going.

My first magazine subscription was to Runner’s World, where Amby has served as writer and editor since 1978. I ran cross-country and track at Hamden High and competed in the New Haven 20K Road Race each September. There, I met Amby’s Wesleyan roommate Bill Rodgers, former American record holder in the marathon and heartthrob of high-school cross-country and track-running schoolgirls across the Northeast.

Aside from the endorphin highs, running served a deeper purpose as I negotiated an adolescence rocked by my parents’ divorce. It was on the roads that I found my footing, where I forged my identity within our family, where I learned that an A on my report card wasn’t the only way to excel and, more than anything, that I could suffer pain and doubt and still function.

I write about this in my memoir—in particular, during the running leg of a triathlon I take on to mark my 10-year anniversary of surviving a glioblastoma, the most lethal form of brain cancer.

When people ask how I’m still around 17 years after a prognosis of one year to live, my first answer is I got lucky. That may be true, but I’m quite sure the lessons I learned on the road contributed as well. When you’re jogging past a snarling dog, my high school coach used to tell us, pretend you don’t notice it. Don’t change your pace. Just keep going.

Which is what I tried to do. My pace might have slowed, but I contended with my radiation and chemotherapy treatments, forged a regimen to keep myself going the rest of the day, and here I am.

Full disclosure: I’ve yet to meet Amby. When I do, on the last Sunday in June, I’ll thank him. He was, after all, among those who got me started on what kept me going. 

A remembrance of the shepherdess of North Guilford

Ellen Rusconi-Black with her beloved--and amazing--border collies

Here's a version of a piece I wrote for my local paper about, bar none, the most upbeat, optimistic person I've ever known. Just being around her made everything in the world seem right. She died last month at 58. It was way too soon. 

Not far from the stall Ellen Rusconi-Black and her husband Bill set up at the Dudley Farm farmer’s market on Saturday mornings stands the barn at Dudley Farm, once considered the epicenter of North Guilford.

If there were a person who personified North Guilford in all its rich history, saltbox pragmatism, and old-fashioned ingenuity, Ellen Rusconi-Black, who died in late April after a brief illness at the age of 58, would be on the short list.

Take her work with border collies. The woman who delightedly called shepherding “the oldest profession known (considered moral, legal, and acceptable)” got her first dog in 1997 on the condition that she train her to compete in sheepdog trials, which have been called the most difficult test of human-dog communication ever devised.

As much as she thrilled to the challenge of the trials, she also reveled in the balanced dance of dog and sheep, choreographed by the trainer, that she practiced and refined each day on the farm.

“They live to work,” she said last spring with her usual exuberance, holding a shepherd’s crook in her hand as she regarded a dozen sheep grazing in the emerald-green fields of Dragonfly Farm that has been in her family since 1835. “The way they linger at my side, looking up at me, waiting for their next assignment, I just love that.”

That led to the business she started with her husband Bill, “Up, Up, and Away,” using her border collies to prevent Canada geese from despoiling athletic fields, ponds, and corporate grounds.

For her, deploying the dogs to scatter the geese, which are at once a protected species and a rank nuisance, was a matter of common sense—and a wonder. “It’s so neat,” she said. “The dogs can stalk the geese because they carry themselves like coyotes, which are the geese’s natural predators. The birds fly away to an area where they feel no pressure and no harm. Everyone wins.”  

That this process often consumed hours is all the more extraordinary, considering that the thriving “Up, Up, and Away” and her work as trainer and handler were only sidelines to her main occupation: as an investigator for non-profit organizations enabling the independence of adults with mental and physical handicaps.

On top of that she wrote grants to support other nonprofit organizations and dozens of articles with headlines like “Skunk Deodorant Formula,” “This Really Happened!” and “Some Days” for wildlife magazines. She also traveled to fairs and festivals to demonstrate her shepherding skills.

In what spare time she had, she knitted sweaters, mittens, gloves, and hats from the wool of the sheep her dogs herded. Some warmed her and Bill through the winter. Others she sold down the road at the Dudley Farm farmer’s market on Saturday mornings.

It is perhaps coincidental that next Sunday there will be a brunch to raise funds for renovating the barn at Dudley Farm, building by building. And that among other items, a tea cosy knitted by Black will be part of the silent auction.

Or perhaps it’s no coincidence at all. Ellen Rusconi-Black might not have been the epicenter of North Guilford, but by her life, her work and, above all, her character, she enlivened, deepened, and perpetuated its identity.

25 Miles and a Minute of Silence at the 5/17 Boston Brain Tumor Ride

At the start of the 25-mile route... 

During the ceremony that followed Sunday's Boston Brain Tumor Ride, Committee Chair Steven Branfman asked the crowd to pause for a minute of silence. A full minute, he said, to contemplate why we were all there. So, as cowbells clanged the last cyclists in on a gorgeous sun-dappled day, I thought about the inspiring people I've met, in person and virtually, in the last three months, like Karin Mallory and her dad and Lindsay Newberry and Noonefights a Lone and Fran Cissna Butler, to name a few. For so long I felt ashamed of having had brain cancer, but they have made me feel proud for having endured it.

Though I was wearing a T shirt that crassly showed an image of my book cover, I realized my story was just one of many and the only difference was that I had the luxury of time to get it all down. I felt intensely lucky for that, and lucky, too, to have survived intact, lucky to be able to take on the 25-mile course, and to feel that blissful exhaustion that followed. So thanks, Donna Doherty, for indirectly making this happen, and to the Massachusetts Brain Tumor Society for a pretty great day.

Three Unorthodox Strategies for Coping with a Cancer Diagnosis--or any Serious Illness

Recently I learned that six-and-a-half years ago I was officially cured of brain cancer—specifically, a glioblastoma multiforme, the most lethal of brain tumors. GBM, as it’s known, has a median survival rate of one to two years.

According to the Journal of Neuroepidemiology, a “population-based cure is thought to occur when a population’s risk of death returns to that of the normal population, and in GBM, that is thought to occur after 10 years.”

Did I jump up and shout Hallelujah? Throw a party? No. I’ve met too many people with a GBM who don’t make it past two years. I’ve met too many of their family members whose lives precariously balance on the hope of each new clinical trial, on the outcome of each successive MRI.

There is also this: throughout the years I’ve lived with the diagnosis, I haven’t put much stock in statistics, neither when I got my diagnosis sixteen years ago nor since.

Still, my non-reaction got me thinking. How unorthodox was my willful oblivion? Had it worked for others coping with a serious illness?

Whatever the case, there was also the possibility that I had just gotten lucky: a few inches to the left, and it would have been a different story. Or, as my radiation oncologist maintains, I had a brilliant surgeon, one who, my brother-in-law reported, told my family that he’d never performed a cleaner resection—no mean feat, considering the finger-like tentacles that make a GBM difficult to remove. Maybe the radiation and chemotherapy treatments had stopped the cancer from spreading.

Or maybe, what I did in addition to my treatments—the coping strategies I adopted—are worth sharing. With the caveat that there is no-one-size-fits-all approach to contending with the diagnosis of a serious illness, here are three.

1. LIES, DAMNED LIES, AND STATISTICS

When, in August 1998, I learned I had a brain tumor and, two days later, heard the words “glioblastoma multiforme,” I knew it wasn’t good. Simply when uttered aloud, those words had a certain sinister ring to them. And, of course, there’s the median survival rate of one to two years.

I didn’t know that. I didn’t need to. All I had to do was look at the shock that froze the faces of my sister and brother-in-law, both physicians. At that moment, I asked them not to tell me my prognosis.

There is no way of knowing whether my decision to keep myself in the dark as to my prognosis figured in my survival. That said, my sense is that certain information cannot be unlearned, particularly in someone, like me, whose world, suddenly and without warning, had been overturned, particularly in anyone, like me, in such a fragile state.

One to two years to live, in other words, would have been seared into my mind. The clock would have started ticking.

Evolutionary biologist Stephen Jay Gould had a far more refined reproach. In July 1982, as he recounts in his 1985 essay “The Median Isn’t the Message,” he learned he was suffering from abdominal mesothelioma, a rare and toxic cancer usually associated with exposure to asbestos, with a median survival of eight months after discovery.

The news was devastating. But then Gould began doing some digging. As someone trained in statistics, he distinguished median survival, a measure commonly used to express survival rates, as the amount of time after which 50% of the patients have died and 50% have survived. 

In other words, a median survival rate of eight months didn’t mean he had eight months to live. Given his relative youth—he was forty—the superlative medical treatment he knew he would receive, and his generally “sanguine” attitude, it meant there was no reason he could not be among the latter 50%.

Above all, he recognized the near impossibility at diagnosis of knowing whether any individual will place to the left of the median—that is to say, before the eight months for his particular illness—or the right, after the eight months.

This was where he found solace. With his particular makeup, he could imagine himself surviving far out along the right of the median.

That’s precisely what he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer unrelated to his original disease.

2. THE UNSUNG BENEFITS OF DENIAL

I remember the first time I walked into an oncology ward. I saw the gray skin, the eyes the color of dull pennies, the puffy features. I saw the face of cancer. 

And then, to protect myself from the fear of becoming one of them, I looked away. I wanted no part of them. During chemotherapy treatments, I had myself treated in a small  alcove separated from the main ward. For radiation, I kept my eyes peeled on a random magazine in the waiting room to prevent association with anyone else undergoing treatment there.

My mission was simple: to view myself not as an inhabitant in the world of cancer but as someone who happened to be in treatments for cancer but would continue, to the extent possible, to go about the routines of daily living in the land of the well.

Naturally, if “neither the sun nor death can be looked at with a steady eye,” as the French author La Rochefoucauld had it, neither is its opposite true. There were days when I lacked the strength to shield myself from the glaring reality of my situation. But those were the exception.

It wasn’t the form of denial that Anna Freud described as an unconscious defense against painful and overwhelming aspects of external reality. That denial has been generally viewed as a pathological, ineffective defense mechanism.

Even an article on the Mayo Clinic website, while acknowledging that “short-term denial ... gives your mind the opportunity to unconsciously absorb shocking or distressing information at a pace that won’t send you into a psychological tailspin,” warns that “denial should only be a temporary measure—it won’t change the reality of the situation” and counsels those stuck in the denial phase to consider talking to a mental health provider.

Of course, the kind of denial to which the Mayo Clinic refers is a denial that one has a disease, leading the patient to refuse treatment. But recent studies propose shifting the lens on the concept of denial—specifically, as an adaptive strategy in meeting the impact of the disease.

A review in the Journal of Psycho-Oncology exploring denial in cancer patients found that “denial was related to improved psychological functioning.” Those patients deployed “active strategies of reali[z]ing that one has cancer, but choosing not to let the illness control their lives, trying to brush the illness aside, and instead create a positive outlook.”

Ruth McCorkle, a pioneer in oncology nursing and professor of epidemiology at Yale, had this take. “Some patients compartmentalize their disease,” she recently told me. “It’s a way to shield themselves from paralyzing fear and at the same time remain functional.” 

3. SOME TIPS ON PRACTICING DENIAL AS AN ADAPTIVE STRATEGY

In view of his positive outcome, let’s return to Gould’s essay—specifically, the reply from Sir Peter Medawar, his “personal scientific guru and a Nobelist in immunology,”2 when he questioned him on the best prescription for success against cancer. “A sanguine personality,” Sir Peter ruddily replied.

That was in keeping with Gould’s thinking. “In general,” he wrote, “those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer.”

McCorkle went further. “It’s about continuing to go about your routine. It’s choosing not to say I can no longer do this because I have cancer or even why should I continue to do this as someone with cancer and instead saying ‘why not try to do what I can?’ It’s about asserting control over circumstances.”

In my case, I adopted a maxim from my high school cross-country coach. When facing a seemingly insurmountable challenge, break it down into manageable distances, he’d say.

In other words, set achievable goals each day. Walking, for example. Walk 500 steps or, if you’re feeling a bit worn down, 100 steps, or even 50. Memorize a poem. If you’re not up to a whole poem, memorize one line. Or two. Draw a picture, or an outline of a picture. Work on a crossword puzzle. Try solving one clue. If you’re not up to more, put it aside.

There’s a fluidity to this regimen. The one essential: make a commitment to do what you choose as your activities every day, even if it’s just a pale approximation of what you might do if you were entirely well.

Why? Because, as McCorkle suggested, it’s a way of compartmentalizing your disease. It’s a way of creating your own sustainable reality within your self-imposed oblivion. 

 

Dancing with Myself

This is my friend Kathy today working at the pocket-sized post office in my town as she has for the last 28 years. She is the strongest, toughest, biggest-hearted person I have ever met. She also knows more people in town than the mayor.    

In December 2011, I walked into the same post office. Aretha Franklin’s “Rock Steady” was blasting. “Rock Steady” had been my go-to dig-deep-inside get-me-home running tune for years.

There was no one at the window. Then Kathy emerged in her USPS sky-blues, looking much the same as she does in the photo above.

“I love this song,” I told her. I had never seen her before. Her regular gig is at the main post office in the center of town.

“So come hear my band Friday night,” she said, no-nonsense.   

I said I would and mentioned I reported for the local paper. Kathy said cool and I showed up, notebook in bag. Kathy had no idea who I was. I reminded her. Then she introduced me to the rest of the band.

I didn’t take many notes that evening. I just danced. It was surreal. It was magical. I love to dance, but only when I can dance solo. Only when I can ping off other dancers or swoop through a crush of shimmying couples or gyrate on the periphery.

Here’s the thing about dancing. For me it’s pretty much the most joyous thing to do. Maybe it’s the endorphins. I don’t know. All I know is that once I hit the dance floor I need to do my own thing and when I do it, there’s no better feeling.

Anyhow, I wrote a rough draft of this article when I got home at 2:30 a.m. that night.

A few weeks after that, during a break at one of the band’s gigs, Kathy, who was sitting at a table with some of her friends, spotted me. “Let’s be friends,” she shouted.

And a few months after that, I became the manager of the band. No one in the band has ever defined what that means, but it seems to work, more or less.