Lise Deguire's Blog, page 5

Looking Back, Finding Meaning

I didn’t plan to visit my old house. Odd circumstances brought me there. Our friend’s mother died, and her funeral took us surprisingly near my childhood hometown. A quick phone search informed me that we were just ten minutes from Oyster Bay. So, after the funeral, we took a drive.

My old white house was now an attractive gray and sat atop a small hill. Workmen strode all over, carrying out siding, installing new windows. An ancient bathtub sank unceremoniously onto the tiny lawn. The tub was retro autumn gold on the inside, with peeling green paint on the outside.

“Did you ever take baths in this house?” my husband inquired.

“I don’t remember.”

“Because, if you did, you took them right in that tub. It’s at least 50 years old.” But I didn’t remember the gold/green tub. I didn’t remember taking baths there. I didn’t remember the house being perched on a hill. I didn’t seem to remember much at all.

I stood on the sidewalk and snapped a photo. An older man strode down the driveway toward us. He smiled, his dark black hair shining in the sunlight.

“Go talk to him,” said Doug. “Maybe he will let us into the house.”

“Hello!” I called out.

“Hello” he responded, with a Spanish accent.

“I used to live here, many years ago when I was a child. Is there any way I could go inside?”

The man hesitated for a second. “Yes,” he nodded, escorting us into the yard.

“Whoa, whoa, whoa,” I muttered, approaching the backdoor.

My husband Doug and I stepped carefully into the house. Stacks of debris were strewn everywhere. The sad-looking kitchen was stripped bare, all the appliances were gone, stained walls all around. But the layout was the same, and my feet trod on the same wooden floors, worn, dull, and scuffed.

I stepped carefully through the stripped-down kitchen, skirting a large junk pile. The dining room seemed smaller than I remembered, with heaps of wood and plaster on the floor. Then I walked into the living room, and immediately felt tears welling up. Forty-four years melted away; I saw everything, just as it happened.

***

It was an October Sunday late afternoon. The autumn sun had faded into dusk. I lounged on a tasseled pillow on the living room rug, facing the stereo. I wore heavy black headphones and listened to Jefferson Airplane’s Surrealistic Pillow. It was one of my brother Marc’s favorite albums; he had left it with me when he returned to college the month before. (I hadn’t yet noticed how unusual that was. Marc never left his prized albums behind.)

I don’t know what I was wearing, probably ripped jeans and a Beatles tee shirt. I was 14, pretty enough for a severely burned girl who refused to wear makeup (because makeup was fake, and I was a true hippy). Picture me with brown thick curly hair, flowing abundantly down my back. “Go Ask Alice” was playing, with its ominous military drumbeat. It sounded creepy, foreboding, but I liked it if only because my brother liked it.

Then I heard something odd.

I turned around and saw my mother. She stood at the kitchen wall phone, leaning into the hallway. She had screamed. That was the odd sound I heard dimly through my headphones, the sound of my mother screaming. But my mother was a calm woman, not a screamer. I stripped off my headphones and looked at her, my face furrowed. Her eyes were wild, her face a mask of fear. Silently, she mouthed the word, “Marc.”

I raced upstairs to my mother’s room, where there was another house phone. I grabbed the receiver, my heart pounding. No one said a word. Silence hung in the air for one last blessed second, one last second of hope.

Then, in a shaky voice, my mother asked, “Is he dead?”

And the man on the other end of the phone said simply, “Yes.”

***

All that had happened in this house, this same debris-strewn house in which I now stood, 44 years later. Returning to this house made my stomach clench and my chest tighten. Every part of me ached in a torrent of grief. So why would I want to go back here?

I had to tell my story again.

We all must make sense of our trauma. Terrible things happen in life, unexpected tragedies befall us. At first, we just try to survive, doing our best to sleep, to eat, to simply breathe. Eventually we find some version of normality, returning to our jobs, picking up the pieces. But at some point, there is deep work to be done, the work of integration, the work of meaning-making.

Where did it happen? Why did it happen? How did it feel? What did I do or not do? Who said what? How did it change me? For good or for ill? To fully heal, we must wrestle with all these questions. It’s not enough to simply survive tragedy. Sooner or later, we must make sense of it.

Our traumatized brains scramble for a coherent narrative, a story to connect all the disparate pieces. Frequently, the first story we construct is toxic.

“It was my fault.”

“It happened because I’m bad.”

These are the stories I battle when I conduct psychotherapy, fighting against a client’s tendency to make the story hinge on their failures, their imagined unworthiness. Often, the job of therapy is to help clients weave new stories which are not self-destructive, stories which allow clients to go on.

“It’s my fault.” A client might say, voice shaking.

“Are you sure? What did you know at the time?”

“I should have known.”

“Really? Weren’t you just 15 years old when this happened?

“I guess.”

“Would a 15-year-old know better? Your own daughter is almost 15 now. Do you think she would have known better? And if she didn’t, would you blame her?

“No! She’s just a girl.”

“Right. And so were you. Was it really your fault?”

“Hmm. Hmm. I never thought of it that way before. Well… maybe not?”

***

So then, what’s my story? How do I make sense of this tragic Sunday afternoon, 44 years ago?

This was the moment I grew up, the moment when I realized I was on my own. This was the moment when I set off like Dorothy in the Wizard of Oz, traveling my own yellow brick road, heading into the black woods with a tiny basket (or, in my case, an army green backpack). Like Dorothy, I was too young to be alone in the world. But, unlike Dorothy, I wasn’t trying to get home again. My home was shattered. I looked to build a new home, a new family, a new life.

“On your own?” you might be thinking. “Wasn’t your mother there? And your dad?”

Yes and no. My mother was… there. But she no longer functioned as a mother. She was a 44 year old psychologist who required her 14-year-old daughter to make her life better, not the other way around. I did my best. She did not comfort me; I comforted her. She wept, I consoled, but she was hysterical. Realizing the job exceeded my adolescent capabilities, I telephoned Rhoda, my mother’s best friend. I explained that Marc was dead, and asked her to come over immediately. That was my phone call to take care of my mother.

Since my parents’ divorce, my father lived hours away. I knew my father was angry with my mother, and her voice only brought him pain. So, it was I who called my dad, to tell him that his son was dead. I figured the terrible news would come a little more easily from me. He yelled at me when I told him about Marc’s suicide. In his shock, my father kept shouting, “No! No! You are wrong! I just talked to him!” I stayed on the phone until he calmed down, transitioning from yelling to weeping to resignation.

Once I made these awful phone calls, the one for my mother and the one for my father, it was my turn. I called my friend Karen, who lived 10 minutes away. “Marc is dead. He killed himself.” I cried into the phone, collapsing into a heap on the hallway floor. It finally felt safe to collapse, now that my friend was coming. I remember clutching myself, my arms wrapped around my chest, gasping for breath.

Karen ran all the way to my house.

This tragic moment, the one I relived in this tiny forsaken house, this is the moment I set off on my own journey, unmoored from the safety of family. I traveled my own land of Oz. I didn’t meet a Tin Man, a Scarecrow or a Cowardly Lion. But I did make friends, friends with unexpected gifts, friends who sang and danced with me, friends who still walk with me decades later. ( I saw Karen just last week. 44 years later, we continue to walk life's road together.)

In the end, my story is that tragedies happen, and beloved people leave us. But if we go on, bravely traveling our path, we can still create love, meaning, and purpose.

Life is so often a challenge. Losses beset us randomly, senselessly. Somehow, still, we must construct our coherent narrative. This is the job of psychotherapy, of art, of theater, of writing, of faith, of connection, of life itself. This is the task we face as we age, the ability to look back and say, “This was my life. This is how it happened, this is why it happened, and this is what I learned.” We make meaning. Hopefully, we make meaning infused with compassion, wisdom, and acceptance.

We go on, we look back, we take stock. We revisit our old houses, sifting through the debris, seeking elusive meaning in the plaster, the dirt and the dust.

And then, shoulders squared, facing forward, we keep going.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.

Who Cares?

Guest Blog by Patrick Lombardi

“Who cares?” my mom says. It’s her go-to response whenever someone criticizes her baked ziti or grumbles about the weather. She says it with a nonchalance that makes you immediately feel foolish for complaining. The retort is rivaled only by her second-favorite catchphrase: the equally stinging “Oh well.”

It’s one of the most important lessons my mother ever taught me without realizing she was teaching me anything.

Growing up, I’d ask myself that question whenever teased about my early-budding whiskers or any other time I felt embarrassed or ridiculed. “Who cares?” was my teenage “whatever.” It helped me pick my battles. Greg said I look like a werewolf? Don’t care. Farted during an algebra exam? Big whoop. Someone ate the last of the chocolate ice cream? Now we have a problem.

I became my own therapist, without the 200-dollar-an-hour charge. Which was perfect, because I needed to put that money toward ice cream. Sometime during my early adulthood, though, I stopped using the line correctly.

When someone would cut me off in traffic or bump into me in the grocery store, I stopped asking “Who cares?” Instead, I’d ask myself that question when in deep bouts of grief or guilt. If I had answered honestly, my response consistently would’ve been: “I do.” But I believed it was better and easier just to brush off the proverbial debris and move on to not caring about something else, as if that made me resilient.

For some reason, I was hung up on this concept of “resiliency” and thought not caring about anything was the cobblestone roadway leading there. In reality, I couldn’t have defined the term if someone marked the page for me in Merriam-Webster’s Collegiate Dictionary.

What I thought I knew about it I learned from Rocky Balboa movies. (The guy could get the snot kicked out of him for six films over three decades. That had to be resilience, right? He clobbered a Russian on steroids, for crying out loud!) In recent years I’ve learned there’s more to it than just being able to take a beating. It’s mental as much as it is physical, emotional more than impassive.

I judge myself more than I should—and I think more than others judge me, also. When someone takes a moment too long to say “Bless you,” I spend the next hour wondering if I sneezed wrong. I still sometimes forget to ask myself the important questions, like “Who cares?” or “How does one even sneeze wrong?” More importantly, how could someone who worries about sneezing wrong be considered resilient?

The only “comfort” (if that’s what it’s called) that I get from being this way is realizing that I’m not the only one. I’m part of a generation whose day is ruined within eight seconds of opening Facebook, yet we still visit the site 600 times a day. We spend so much time flipping out about politics that we didn’t even notice when McDonald’s stopped serving all-day breakfast. (I always crave hotcakes for lunch!) We’re summed up by what we’re perceived to be offended by and haphazardly diagnosed as resilient-less.

Although, how could we not be resilient? We were just kids when our parents, aunts, uncles, cousins didn’t come home from work on September 11, 2001. We lost friends before they were fitted for their caps and gowns and others who never made it out of Afghanistan. We were sacked by a financial crisis behind the line of scrimmage, then had the ball stripped from us by a global pandemic—all before our 30th birthdays. We’re marinating in student loan debt, juggling multiple jobs to cover the rent, and are on track to retire 10 years after our own funerals. Yet here we are: writing, working, loving, living, grinding. We’ve persisted and persevered just like the generations before us and all the ones who will follow. Who are we not to be resilient?

If you look up the definition of the word, you’ll learn, like I have, that it’s not just about recovering quickly from difficult conditions; it’s also the ability to withstand those same conditions. Recovery isn’t a prerequisite. It’s a goal.

We all have levels of resiliency in us. It’s variable, etched on a rubber band, not in stone. This pliancy is a necessity, a tool that helps us to grow and improve ourselves from the inside out. Similarly, life events, no matter how miniscule, help us to appreciate the big picture.

In recent years, I’ve been holding my loved ones closer and longer in greetings and farewells. I’m bad at staying in touch, I’ll admit. But when I finally see my family and friends again, I don’t want to stop seeing them. My sentimentality derives from loss. I’ve been to more funerals than concerts, which is something I shouldn’t have to admit for another 40 years. One of my best friends died at 23 years old. Just this past fall, my wife miscarried during her/our first pregnancy. I’m (hopefully) not even halfway through my life yet, so I know this isn’t the last I’ll be seeing of loss.

There are countless individuals with stories like this and a myriad more who experience worse and severe tragedy and trauma on a regular basis. In those times of loss, stress, failure, and abuse, it can be easy to ask the question “Who cares?” and let it hang there like damp sheets on a clothesline. What’s challenging is answering thoughtfully and honestly.

My mother seems to have it down pat. “Don’t like my cooking?” She’ll respond, “Who cares?” with the same cheek as “Up yours.” But when a relative passes away or someone gets sick, it’s out of her vocabulary. She shows she cares instead of wasting her time pretending she doesn’t. Asking, “Who cares?” only accomplishes the latter.

I still like to ask myself that question, though, whether something tragic or simply unfortunate happens—or even when I find I’m harping too much on something. I’m able to cut down my problems and concerns into chewable, bite-sized pieces. They’re easier to digest that way. Everything wears us down to some degree, but we build ourselves back up through our attention and personal efforts, even if it takes a while.

None of this diminishes a person’s diligence or determination. That’s just the way life is. You wouldn’t be here, reading this, if you weren’t stout and tenacious. That persistence and perseverance is what’s important.

The question may remain: Are you resilient? The answer is yes.

Am I ? Eh, I make a convincing argument. But oh well. Who cares?

Patrick Lombardi is a lifelong New Jersey resident. He earned his B.A. in English from Rider University in Lawrenceville, N.J. He is a full-time employee with the state and contributes original content to BestofNJ.com , including a food truck series, historic series, and hiking features. He also has been published in outlets such as Buzzfeed, NJ.com , Odyssey, MyCentralJersey.com , and Patch.com . He published his first book, Junk Sale , a collection of humorous short stories and essays, in August 2018. You can reach him at PatrickLombardi.com.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.

My Brother, the Whale, and the Duck

My brother Marc and I were born exactly four years and 51 weeks apart. It was just my birthday, and on February 19th, it would be his. As a child, I don’t remember Marc ever having a birthday party. There are no photos of a party, although to be clear, there are hardly any photos of him doing anything at all.

Dear reader, I am going to assume that you already know all about my brother, from either my book , my blog , or my articles . If not, bullet point items are:

- He was perfect

- I adored him

- He was a literal genius: perfect academics, jaw-dropping test scores, a mind so intimidating that he won all arguments, with adults of any age

- I survived a bad fire

- We were neglected

- He killed himself when he was 19.

In lieu of a birthday party, our mother would cook Marc’s favorite meal, spaghetti with homemade meat sauce. Our mother, although not a fabulous mother, was a fabulous cook. Her meat sauce was thick with browned hamburger, onions, garlic, and tomatoes, heaped on white spaghetti, straight from the box. Marc would eat three huge platefuls. At the end of dinner, he would lie engorged on the dining room floor, his long brown hair spread all around, his hands on his stomach, moaning in satisfied pain.

I don’t remember birthday presents. There were presents to be sure, but I don’t remember them and there weren’t many. For my birthday one year, Marc gave me a stuffed bunny. With astonishing creativity, I named it “Bunny.” Bunny was soft as feathers, and he fit in the palms of my hands. His fur was light gray, mottled a bit with darker gray and white. He had fetching long gray ears which were white on the inside, a rounded stump of a tail, and delicate whiskers. A gift from my precious Marc, Bunny instantly became my favorite stuffed animal.

I lost Bunny the next summer on a family cross-country trip. I left him sitting on a rock in a campground, distracted by my packing duties. By the time I remembered about Bunny, my parents said we had driven too far and couldn’t turn around. I was devastated.

For Marc’s birthdays, I bought him pieces for his prized drum set. One year it was a second cymbal. Another year it was a high-hat. Another year it was a new tom-tom. These gifts required me to walk to the music store in the next town and lay out considerable cash. I paid for them with “my money,” the money from the settlement from my burn accident.

I don’t know what to say about the fact that I can’t remember any presents my parents gave their son, but I know I took money out of my burn fund to buy him the best presents I could, year after year. I loved my brother so much.

I have done a lot of interviews since my book Flashback Girl came out. I talk about my parents, in particular my mother. She failed us a lot. Our dad did too, although he tried harder and I think that counts. When the whole story gets laid out, the abandonment, the neglect, casual and profound, the deaths, I am repeatedly asked the same question: “How did you turn out so well, given your parents?”

And I say, “But I did have one wonderful parent, and that was my brother Marc.”

Marc taught me how to love. He listened. He pushed me to be honest. He taught me that I did not have to be gifted to be worthy. This was a crucial lesson in a family run by gifted narcissistic parents.

My brother killed himself 44 years ago. He is gone. He is also. . . not gone. I think I hear from Marc at night. Sometimes when I can’t sleep, I imagine that he is with me, and that my pillow is on his lap. This is how we used to ride in the car together, me lying down, with my pillow on his lap. So, I envision this scene, and I talk to him.

I think he answers. I have had many answers from him in the dark of the night, most of which just could not have come from my not-genius brain. Often, the answers come in images.

The last time I heard from him, I asked (in my head I asked) what it was like, following me through life, him being dead and all. The answer came as an image, an image of a dark massive whale swimming alongside me. I’m in a boat, the whale is nearby. You can’t see or hear the whale, but he’s there, warm-blooded in the cold ocean. Now and then you can spot his breath, a tiny spout of air. You might even catch his gray fin if you look closely. That’s how you know the whale is there. Otherwise, you just have to trust it. There are whales, even when you don’t see them.

So, Marc indicated that he is like a whale, swimming near me. I can’t see him, I can’t hear him, but he is there.

I have one more image to share. It is not a photo of us. I don’t have any photos of Marc and me, as we got older. My parents didn’t own a camera, and apparently didn’t feel the need to take photos of their two children. I have some old school pictures, and some baby photos, and that’s it. (Which is devastating, to be honest.)

What I do have are these clay figures that Marc and I both constructed in art class. These clay figures embody everything about us, about him and me.

Marc forged his figure when he was 9 years old. It is a finely detailed, two-toned clay figure of his four-year-old hospitalized sister, sitting in a “go cart” (like a wheelchair, but with extended legs). Our father stands behind, pushing me. The figure is haunting, a nine-year-old depiction of the trauma that had shattered his family. He made it for art class and undoubtedly earned an A. His figure is delicate and broken. I must hold it carefully or it will break further.

I also made a clay figure for an elementary school project. It is a "duck ashtray." The duck is kind of orange. You only know it’s a duck because I am telling you: it’s a duck. The only clue to it being a duck is its weirdly rounded beak. The tail of the duck is somehow also an ashtray. It doesn’t look like a tail, nor does it look like an ashtray. Also, whoever heard of a duck ashtray? The figure is ugly but sturdy. It never broke. It is as solid as ever, 50 years later. Cheerfully solid.

That is me and that is Marc. Solid or delicate. Cheerful or tragic. Primitive or exquisite. Like his figure, Marc broke. But I still have his clay statue. And apparently, if I can believe it, I have a whale who loves me a lot.

Happy birthday, Marc. Thank you for being my best parent. I feel you. I can see your air bubbles now and then. I will look for the flash of your gray fin. I will trust that you are there, swimming alongside me, right there.

*****

That is where this blog ended, one hour ago. Pleased with it, I sent the link to a few of my brother's friends. I am in touch with some of them, all these decades later.

Rather quickly, I received a response from one of them. Henry attended high school with Marc, was a fellow drummer in the marching band, as well as a fellow genius. He has been reading about the Cree Indians, and informed me that the Cree word for "whale" is almost the same word as the Cree word for "God." Then Henry wrote: "The Cree look at the whale as a superior spirit, an elder brother on the journey alongside us."

My jaw literally dropped. That's my whale. He knows everything.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.

The Bottom of the World Bubble

Remember people? I’m not talking about your family or close friends. I’m talking humanity, unknown people. Drinking in a bar and talking to strangers. Dancing at a concert. Playing pool and laughing. Spontaneously chatting with someone new. The spark of spontaneous connection.

It is has been two years since COVID struck. I wouldn’t say that I am an extrovert, but I am definitely no introvert. Yet, for 23 months, I have spent time only with family and a few friends. There were some joyful forays last spring when, post vaccines, we traveled to Chicago and Minnesota. We even saw a Broadway show, eating tapas and drinking margaritas with friends in a tiny outdoor hut. But gradually, Delta and Omicron, denizens of the dreaded Greek alphabet, drove us back home, where we have hunkered ever since.

The thing is, we bought vacation tickets last March. Freshly vaccinated and prior to the variants, we booked a once-in-a-lifetime Antarctic expedition. It seemed fine back when we wired the deposit. But, as the January departure approached, this dream trip started to seem like a nightmare. Omicron was advancing exponentially. One day alone, 50% of my caseload came down with COVID. How could we possibly travel all the way to Antarctica without getting sick? Plus, Chile (our departure country) had exacting COVID restrictions, which could land us in quarantine thousands of miles from home.

Here was the gauntlet: we had to test negative prior to boarding the international flight. We had to test negative in the Chilean airport upon arrival. Finally, we had to test negative to board the expedition ship itself.

Eyes on the prize, my husband and I made brutal choices. Like the director in A Chorus Line casting his dancers, we cut, cut and cut. We canceled our trip to New York City to celebrate our daughter’s birthday. Then we canceled Christmas at our friends’ house, quietly celebrating instead with our daughters (plus Ben!) at home. Finally, a knife to the heart, we canceled our precious decades-long New Year’s celebration with friends.

We stayed home. We did nothing except pack and hope, shopping online for glove warmers and down vests. I think our friends thought we were crazy.

On January 5, we set off, KN94 masks donned, seeking quiet corners in the JFK airport. We ate like food-stealing criminals, furtively shoving chunks of granola bars under our masks. Upon arrival in Chile, everyone on the plane, and all international travelers, stood in line for hours to be tested. Awaiting the results, we holed up in a hotel, gazing down at the streets of Santiago, unable to explore save for a quick park stroll.

Testing negative again, we flew to Punta Arenas, and finally connected with our cruise line. But instead of going straight to a welcome reception, our bus drove straight to the Punta Arenas testing clinic.

I dreaded this test most of all. It seemed cruelly possible that we could have sacrificed Christmas and New Years, flown to the end of the world, within sight of the ship itself, and then be told “No trip for you!”. Or maybe Doug would be told no. It could be either of us.

“You can’t be mad at me if I test positive. I did the best I could,” I said to my husband.

“I was thinking the same thing. Don’t be disappointed in me.”

“I won’t. We both tried so hard.”

But, miracle of miracles, we tested negative. Relieved, we finally joined the welcome reception, waiting to board the ship. I looked forward to the expedition company’s presentation, happily anticipating slides of penguins, whales and icebergs. However, this presentation was deadly serious.

We were informed that, out of 14 ships currently in Antarctica, 13 of them had COVID. There were no guarantees we wouldn’t be one of them soon. The company said we did not have to take the cruise. They would completely refund our money and help us travel home.

“Don’t go because of the money,” they said.

On the other hand, there were only 28 potential passengers. On a ship that normally held 120, there were 28 people left who had booked this trip, and had managed to arrive in this meeting room, COVID-free. “This would be as close to a private cruise as most of us could ever hope for. Think about it. Let us know in ten minutes if you change your mind and don’t wish to go.”

Presentation over, the room buzzed in quiet conversation. I looked at Doug. “Do you want to turn around? Do you still want to go?”

“Of course we are going! We came this far.”

In fact, all 28 passengers chose to go.

At first, it was weird. The dining room felt cavernous, not even 50% full. Everyone sat far apart, greeting each other through masks. Our table was set for four, but the other two settings were quickly and permanently removed. Many tables had these ghost settings, suggesting how many others had originally hoped to be on board. The crew, their first time out in years, was eager to connect, but the dynamic seemed odd, as the crew outnumbered the passengers, 3 to 1.

Each morning, everyone on the ship took a COVID test. And each morning, miracle of miracles, everyone passed.

Over time, the vibe changed. The ship that initially felt too unpopulated now felt roomy and free. Want a seat by the window? Take your pick. Want an unobstructed view on the deck? Choose from four different perfect spots.

As the days progressed, we all relaxed into the best COVID bubble ever. It became scientifically impossible any of us were ill or contagious. We had been repeatedly tested, with absolutely no chance to encounter new people for the next 12 days. On this ship at the bottom of the globe, we were as safe as anyone could be in the whole world. And for the first time in almost two years, I had no fear of COVID.

At night, we gathered at the bar, cruising past pale blue icebergs. We drank "negronis" and scarfed peanuts. People told jokes and stories, increasing in hilarity. One night, I laughed so hard that my belly hurt and I couldn’t catch my breath. We sat in ever-widening circles, as more and more people joined the evening parties.

One night toward the end of the cruise, a fellow passenger proposed a game. A group of 12 of us sat around an oval dining room table. We learned how to play "Codenames," listening to our “cluemasters.” The rest of us conferred, deciphering the clues, and strategizing.

One of my new friends sat to my left, very close. In his excitement, he shouted a bit, directly in my face. Unaware, a tiny droplet from his mouth flew in the air and landed on my wrist.

Momentarily, I froze. COVID! His breath was so close to me that I was unavoidably exposed. Danger! Danger!

But then I remembered. We didn’t have COVID on this ship. I was perfectly safe, despite this brazen droplet. I breathed for a minute. I relaxed again into the warmth of this community, surrounded by strangers who had become friends. I drank in the warm air, made even warmer by our collective breath, our completely danger-free breath.

I remember people. I remember talking to strangers without fear. I remember pubs and bars, laughing and shouting. I remember drinking tequila shots and dancing. I remember singing in choruses, our musical breath joyfully intermingled. I remember laughing in packed audiences, thousands of us, collectively howling in unison. These communal interactions were once commonplace joys of life. Sustaining and empowering – oh how I miss them.

Remember? Please, may these times return soon. Please may we all be safe again to savor the best of humanity, our collective heartbeat, the hum of life.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.

Writers & Resilience

Guest blog by David R. Roth

Resilience is commonly used to describe the capacity to overcome things like trauma, tragedy, or oppressive adversity. It’s a word that carries a heavy load. Using it to designate one of the skills a writer must develop seems hyperbolic at best, and at worst insulting to those who experience life-altering ordeals. And yet here I am placing writers and resilience side by side in the title of an essay. If you have ever written with the hope of having your words published, especially if that hope included a publisher actually paying for the privilege of printing your words, you know what I’m talking about. If you haven’t, allow me to explain.

Scan the volumes of how-to books on creative writing—from the countless formulaic guides on writing a bestseller to the professorial elegies on the art of writing—and you will find that one piece of advice appears in some form in every one: Steel yourself for relentless, soul-crushing rejection. Aspiring authors are constantly reminded of how few of them will ever make a living from their writing and how rejection and, even worse, indifference comes from every direction: journal and magazine editors, fellowship and writing retreat selection committees, MFA programs, book festival event planners, writing contest judges, literary agents, publishers and, the unkindest cut of all, readers. The odds of experiencing anything even vaguely resembling success as an author are so long that it is a wonder anyone would choose to put words on a page and then seek to release that page into the unforgiving world we euphemistically call the marketplace; a euphemism because a more accurate term would be abattoir, the place where most of our work goes to die.

So why try? The case made by most who speak to this subject is that a writer writes because they have to. If you are called to the craft, they say, you do not consider it a choice. You take on this uniquely solitary task out of a passion for the uniquely human act of smithing words into sentences and sentences into stories. This passion, writers will tell you, is born of a belief in the profundity and importance of storytelling to the lives of humans; a belief that is grounded not in the ego of the storyteller but in the history of the species.

In his book Sapiens: A Brief History of Mankind, Yuval Harari wrote, “Sapiens can talk about…entities that they have never seen, touched, smelled, tasted or heard…. This ability to speak about fictions is the most unique feature of Sapiens language.”

The ability to speak about fictions, to wonder, to imagine, this is what makes us human. As Steven Pinker noted in The Stuff of Thought: Language as a Window to Human Nature, “[Early] wordsmiths…reached for a metaphor that reminded them of a specific idea and that they hoped would evoke a similar idea in the minds of their listeners.” Metaphor comes from the Greek meaning to transfer or to carry across. The seed of language development was this desire to come up with a gesture or sound that could carry an idea—say, a prowling tiger or a watering hole or a herd of wildebeests or the desire to mate—across the distance between the speaker and their audience. The idea may not be identically represented in the respective imaginations of those to whom it is transferred, but the story it tells—“There is water on the other side of that hill”—is shared.

Writers insist that it is this Promethean power of Sapiens language that fuels their passion to create not for personal gain but to honor their commitment to smith the right words in the right order to achieve the desired effect. I contend that this is merely writers’ highfalutin way of rationalizing their persistent, irrational pursuit of an idealized writing life.

Rationalization, you gasp, not passion? The passion story has been expressed many brilliant ways by famous writers who struggled through periods of rejection, as well as by not famous writers whose work is both admirable and unknown, and it is my judgment that this passion they speak of is writers’ first line of psychic defense against a vocation that is structured to break their heart and then suck the marrow from their bones. Writers must tell themselves (and believe) some version of the passion story if they are to withstand the punishment of the writer’s gauntlet.

After the writing is finished, then comes the pitching, then editing, then editing some more, then publication, then promotion, and finally—if one experiences the great good fortune of attracting a reader or two—criticism. This gauntlet is so fraught that no amount of passion for the creative process can possibly be sufficient to protect the writer from the potential frustration and pain that awaits at every turn. The pitch that inspires no interest. The editing process that turns your labor of love into an act of infanticide. The agent who can’t sell your work. The publisher who decides to pull the plug. The promotion that eats up both your money and your writing time. The critics who decide it is their responsibility to add insult to the injuries already meted out.

So, yes, rationalization formulated as passion to forge the resilience necessary to withstand what Henry James called “…the madness of art.” Art’s madness takes many forms, ranging from crippling self-doubt to constant rejection and the inevitable criticism. Becoming a writer must include strategies for steeling themselves against the madness so they can focus on their work. Writers’ strategies for strengthening resilience are much like anyone else’s, including challenging assumptions, positive self-talk, overcoming fears, and finding a supportive community. But the passion story remains the writer’s sturdiest bulwark. James said it best in the famous lines that precede the one quoted above. “We work in the dark—we do what we can—we give what we have. Our doubt is our passion and our passion is our task.”

Our passion is our task. It sounds reductive. But if there is a truism to be taken from James’s fictional character’s lament, it is simply that, in the end, storytelling is a vocation one takes on against all odds. It is a task best suited to the resolute and resilient.

David R. Roth has an undergraduate degree from Stanford University and an MFA from Cedar Crest College’s Pan-European writing program. He has studied creative writing at New York University, The American University in Paris, and Drexel University’s Storylab. His short stories have appeared in Passager Journal, Moss, and Every Writer. His debut novel, The Femme Fatale Hypothesis, was released in November 2021. His work focuses on fictional lives lived in fictional Delaware River towns in Pennsylvania, his real home for four decades.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.

Angels who leave Christmas trees

When I was four years old, an angel left me my very own Christmas tree.

I lay on a soft twin bed, tucked in the corner of a wood-paneled room. The room was sparsely furnished and dark, with a glimmer of light shining under the door. I had never been in this room prior to this Christmas Eve. The surprising tree stood to my left. Behind it, and me, a window looked out on a white snowy Boston day.

The tree was my height, a four-year-old girl height. If I could have spread my arms out to the sides, I might have touched it from end to end. But I couldn’t, because my arms were roped to my torso by tight, freshly healing scars. The little tree smelled like fresh air, forest, and pine. Its heady scent was a long way from the disinfectant and rubbing alcohol that now dominated my world. Ironically the scent echoed the same smell as that last day in New Hampshire, the air full of cedar trees. In fact, this Christmas tree smelled just like that day of vacation, that day which ended in explosion, fire, and horror. (See Flashback Girl for more.)

My family was somewhere, somewhere in the unfamiliar apartment. I couldn’t hear them; I didn’t know where. However, I was used to being alone now. I had spent the last four months without them in the hospital. My dad showed up on weekends, gamely pushing me in my hospital go-cart around the corridors. If my mother came, I have no memory of her. (To be clear, I am told that she came, and I am sure that she did. But I have not a single memory of my mother beside me.)

My brother Marc came to visit at least once. He was my favorite person; I adored him. Prior to the fire, I had followed him everywhere like a puppy in love. Whatever he wanted to play, I would play. Whatever he said was true, was true. I was like a tiny disciple. Little Marc, 9 years old, made the trip up to Boston to see me and our mother. I don’t remember him being there. I am told that when he came to see me, I turned my face away and would not speak to him. I would not speak to him, my brother, my everything, even once during his visit.

That may be when my father realized that I was not well.

I don’t know when my parents began the campaign to take me out of the hospital for that one Christmas night. My cousin tells me that my parents worked hard to get me out. The next night, I went right back to the sterile hospital ward for another month or so. But I had this one night out, one special Christmas eve with my very own Christmas tree, away from the white capped nurses, and the screaming burned children.

The owner of this apartment, Judy, was a friend of my cousin. I don’t remember a single thing about her, but I’m told she visited me regularly in the hospital. I know that she vacated her own apartment for the holiday, so that my family could stay there. I do not know for sure, but I am confident that it was her idea to put that tiny tree in my room. (My parents would never think of that). That tree came from Judy, whom I don’t even remember, who did all this so a little girl could have one peaceful Christmas morning.

Some people are so kind. Their hearts seem to burst with generosity, warming the very air around them. Some people’s smiles calm us. Some people center us just by entering the room. You know those people, right? How many of them are there? Where do they come from?

I once had a discussion with a minister friend of mine about whether God existed. I was not raised religiously; my parents were atheists. Unlike them, I have always been spiritually inclined (perhaps naively, perhaps wisely). So, I said to my minister friend, “I don’t believe in God per se. But I do believe that people can be very kind, and that people have mysteriously lifted me up, often at the exact time that I needed. So, I believe in the powerful force of human kindness.”

He replied (and I never forgot this), “How do you know that those people weren’t sent by God to help you?”

I don’t know.

This story, this Christmas morning in Boston, this is the first Christmas I can remember. That little tree is my very first Christmas memory. This bleak fact makes me weep. I wish my first Christmas memory were in my own home, surrounded by my family, cozy and warm, not alone, peering at a tree in a strange dark room.

But notice the other side of the story. Someone gave me her bed for the holiday. Someone set up a tiny, sweet-smelling tree, just for me. Someone vacated her apartment on a holiday and loaned it to my traumatized family.

Is that God? Are the extraordinary people, who do powerfully kind acts, sent by God? If so, I need to update my personal image of God. To me, God looks like the painting on the Sistine chapel, white bearded, white skinned, masculine. That image does not accommodate this energetic swirl of people, magically inspired to show up right when a suffering person needs help.

Nor does this narrative explain all the times that no one shows up at all.

I don’t know; here is what I think. There is magic. There are forces we don’t understand. There is grace. There are moments of abandonment and despair when nobody shows up. And there are moments of grace and light when someone does. That someone may not be who you expect. But a neighbor might leave flowers at your doorstep. A doctor turns out to be unexpectedly kind. A friend arrives to help mop your flooded basement. People pop up out of nowhere, ready to help. So maybe my minister friend was right.

So, I ask you, my reader friend, to notice the people who struggle around you. If you have the strength and the energy, show up. Make a phone call, pay a bill, or just listen. Witness someone’s pain with warmth and care. Help if you can.

Try to be the angel when you can. And to notice the angels when they show up for you.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.

What We Learned from Rudolph, Frosty and Charlie Brown

Every year when I was little, I eagerly awaited the TV holiday specials. They ran only once a year, and if you missed them, that was it. There were no DVDs and there was no streaming. You had your one shot to see Rudolph, or it was over. “There’s always Tomorrow” truly did not apply.

Like most people my age, I can basically recite these specials from beginning to end. Even today when I watch, I beam a smile pretty much from start to finish. I sing along heartily to each song, anticipating precisely when each commercial break will happen.

I have been thinking about the meaning these shows tried to convey. What were these shows trying to teach us? Were we supposed to be learning about charity and generosity? About the birth of Jesus? In truth, Jesus was barely mentioned. Notably, the characters in these shows all endured tremendous stress. What resilience lessons did we learn from Frosty, Rudolph, and Charlie Brown? My husband, Doug, and I reviewed the old holiday specials and made a list of what they taught us.

Frosty the Snowman

Doug: Frosty is about the terror of sudden death, and existential anxiety. There is always a threat of imminent catastrophe (melting). Yet, it is important to keep cheerful.”

Lise: “There is a magic hat out there, and it’s very important to have it. Also, beware of rabbits.”

A Charlie Brown Christmas

Doug: “The power of friendship; coping with bullying. Linus is the true hero here.”

Lise: “The sheer joy of dancing. It’s great to put on a show! In addition, never give up on your plants, no matter how dead they look. When plants look bleak, try singing to them.”

How the Grinch Stole Christmas :

Doug: “Greed, envy, and materialism are corrupting forces”

Lise: “Do not underestimate the strength of your small dog. Try tying fake antlers to his head and see what happens. Also, mean people literally have hearts that are way too small, which explains all of our problem."

Rudolph the Red-Nosed Reindeer

Lise: Here I must pause full-stop. Rudolph is a hero to me, and I will not joke about him. This show was always my favorite. As I got older, I recognized my total identification with Rudolph and his heroic journey:

-He was mocked and abused by his peers growing up, due to his unusual appearance (check).

-His parents did not handle it well (check).

-He set off on his own, against terrible odds, making his way through treacherous conditions (check).

-He found his own band of friends, all of them fellow misfits (check).

-There were a lot more misfits than he ever imagined (check).

-It turns out that his disability was a source of strength for others (check).

-But he remained loyal and true to his misfit friends and never forgot them (check).

In truth, I have never been able to watch Rudolph without crying.

I have told many people about my fixation with Rudolph, most of whom looked at me like I was very strange. However, I came across this essay which explains my point of view. (https://www.nytimes.com/2019/12/11/opinion/rudolph-christmas-queer.html). So Rudolph is a hero to many people.

Lise: "Rudolph the Red-Nosed Reindeer is about the triumph of courage over bullying, the strength that comes from welcoming difference, and the healing power of community."

Doug: “Traveling in the fog is hazardous, and it’s important to have appropriate lighting.”

I hope this blog has brought you a laugh during what can be a stressful time. The holidays can be fun and meaningful, but they can also be fraught with high expectations, family pressures, disappointment, loneliness, social alienation, loss, financial anxiety…you name it. The older we get, the more the pressures and losses can mount. I hope that your holidays are peaceful, and that you have times of contentment and joy. As they say at the end of the masterpiece that is Rudolph: “Have a holly jolly Christmas, and when you walk down the street: say hello to friends you know, and everyone you meet.” (click here for a bit of Rudolph: https://www.youtube.com/watch?v=f8Em2Ixvefo)

See you in the new year!

#resilience #holidays #Rudolph #Frosty #CharlieBrown #Christmas

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.

A Tough Fall

(Part 5 in the series Choosing More Surgery)

I spoke to a psychic two weeks before my recent operations. The psychic is a friend, an ebullient Cuban immigrant, who regularly conveys messages from my dead relatives. My friend Victor said that my surgeries would go well but advised me to be careful about falls. He also warned that the recovery would take longer than I thought.

Indeed.

I have finally recuperated from both surgeries, and a follow up laser treatment. All fall, I wore bandages, wrapped in cloth, or plastic, or new 21st century materials of wound care. Ten weeks later, those bandages are gone. I can exercise and move around again. Contrary to my dead relatives’ concerns, I never did fall, although I came close a few times, tripping over my wound vac cord, catching myself breathlessly. I was extra vigilant on the stairs, clutching the handrail, whispering to my deceased grandparents that I was being cautious like they wanted me to be.

My surgeries started in September, and I was not fully healed until the end of November. It was not a good Fall, in other senses of the word. Maybe that’s what my relatives meant? Watch out for the Fall?

The hardest part turned out to be the old, dreaded donor site. If you have had a donor site, you know what I mean, and if you haven’t, then good for you.

There was one hospital visit when Michelle, the nurse, was picking off bits of crust from my still open donor site. She was gentle, her brown eyes shining with care and concentration. But the pain, that one searing pain, sent me straight back to being four years old.

“Stop!”

She stopped immediately. “I’m so sorry that I hurt you.” We sat together for a minute, very still.

In that moment of peace, I could think. The pain was ancient, a deep intense searing, an open-mouthed shock. The sting of Michelle’s careful cleaning was not actually that bad, but it caught the tail of my ancient pain, and spun into the sky like a kite flying in a tornado. The current abrading evoked all those years of bandage changes, writhing without pain medication, screaming “Mommy Mommy Mommy” until the dressing changes were done. (See Flashback Girl for more on my early story).

My body carries those memories. I guess it always will.

“It’s not really you. It’s body memories. I’m OK,” I clarified, through my tears. (For more on “body memories” please see Bessel Van Der Kolk’s book The Body Keeps the Score).

This donor site was stubborn; it did not wish to heal. All donor sites heal within four weeks, or at least mine always have. But not this one. Five weeks; still not healed. On another checkup at the hospital, Dr. Eberwein inspected it and said words you really don’t want to hear from your extraordinarily gifted plastic surgeon: “I don’t know why this is happening to you.”

Various theories emerged. Was I eating enough protein? (I was). Could I be Zinc or Selenium deficient? (I guess. What is Selenium anyway?). I was sent home with instructions to mega-load on these minerals for a week.

I was dubious about the mineral plan, but it may have been the ticket. Within days of taking them, my donor site healed over, bright purple, with no open flesh. Curious, I asked “Alexa” what foods contain zinc and selenium. It turns out that they are rich in red meat.

Guess who doesn’t eat red meat? That would be me. Dr. Eberwein was right as usual.

My body has changed. None of the changes are necessarily attractive, but rather highly functional. First, there is the purple patch of skin on my right thigh, climbing up into my hip. That is my donor site, recently healed through the miracle of zinc and selenium. Don’t touch it. It is still tender and itchy. But the donor site served its purpose. It provided skin for my grafts, for the places my body needed to stretch and grow.

The formerly-on-my-thigh skin now spreads in two vast rainbows, from my waist up into my chest and down again. (Sometimes I wonder what it is like for thigh skin to suddenly become torso skin. Imagine if you will, all those years of being sat on, covered with pants, ignored. Now suddenly the skin is up on a waist. What is that like? To have always been on a thigh and now to be upright on an abdomen. Does it feel like a promotion? Does my thigh-now-abdomen skin now dream of being bared in a crop top? A bikini? Fat chance there.)

Anyway, I digress. My new rainbow grafts are not pretty. I will say they look…interesting. They are two large red semicircles, patched into my torso wall. Most importantly, they work. I have inches more new skin all over my torso, enabling me to breathe.

OK, I could always breathe. But now, I can breathe deeply. My lungs expand evenly all the way down my chest into my back. Suddenly I have an entirely different concept of taking a “deep breath.” This is what I was supposed to be doing? I was breathing so shallowly, filling perhaps 65% of my lungs. (I am amazed I have been as calm as I have been for the past 50 years. I should really have been a maniac.) My lungs feel like a vintage car that has been garage-kept for decades, finally out on a spin, racing down a peaceful country road.

Moving on. I also have skin. My waist is no longer an angry red line, tight and taut, biting into my flesh. Now my waist gently expands, allow me to eat without pain. It used to be that my waist ached after every large meal, the skin below stretched out. Imagine one of those balloon party animals, twisted. The twisted area was like my waist, the ballooned-out area was like my abdomen. Life was constantly uncomfortable that way. Now, post grafting, I can eat and remain at ease. My hips fall gently out of my waist area, instead of the bulging explosion they used to be.

I am the only woman I know who rejoices to have a larger waistline.

It challenged me to have these operations. Going back for skin grafting felt like returning to a battlefield as a former child soldier. The searing pain, the smell of rubbing alcohol, the IV needles biting in my forearm, all of it. I did all this alone at the age of four and it was brutal. But I had a lot going for me this time, fifty years later.

I had friends who stayed overnight near the hospital, arriving cheerfully every morning in their yellow scrubs, ready to scratch every itch, watching over me.

I had a husband who nursed me as diligently and capably as any nurse could, fretting over possible infections and making sure I ate my protein.

I had a brain that, although traumatized, had healed with decades with skillful care from seven different therapists.

I had neighbors who dropped off food, daughters who loved me, friends who sent flowers and cards and texts, letting me know that I was in their thoughts, even though I felt isolated.

I had health insurance that paid for me to get the most skillful care from the best surgeon, and a burn team of experienced kind nurses.

I even had a community of interested readers, like you, who wanted to learn about this land of burn care. Writing my experiences helped me stop, think, and reflect along the way. I might be going through an hour of despair or self-pity. I might be unable to sleep, tossing in my discomfort. But in those moments of shadow, I might think, “I could write about this. This experience would be interesting to people.” Knowing that my suffering could prove useful to others helped me bear those moments. It helped me so much.

I am glad to finally report that this journey is all done. Thank you for coming along for the autumn ride.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader

How to Actually Have a Happy Thanksgiving

(As currently featured in Psychology Today)

Are you excited about Thanksgiving? Are you looking forward to getting together with your whole family because you always have a great time together? If so, this post is not for you. No, this post is for the people who anticipate disappointing holidays, the people whose families always act crazy, the people who walk away feeling crushed.

“I hate Thanksgiving. Grandpa will be drunk by 2:00, and my mother will spend the day crying.”

“Thanksgiving has never been the same since my sister died. We all avoid sitting in her chair, and no one even talks about her. I miss her so much.”

“My Uncle Harry starts drinking, then he makes the most horrible sexist comments. He talks about women’s breasts, criticizes my aunt’s weight, and my mother just loses it. They wind up screaming at each other and the whole day is ruined.”

Every year, clients shuffle in around the holidays, heads hanging low, dreading the day. Even worse, they are each convinced that they are the only ones having a tough Thanksgiving. The television plays sappy holiday movies; Facebook is full of smiling faces and glazed turkeys. It seems like all of America is in a lovefest, eating their perfect meal with their perfect families.

Adjusting your expectations for the holidays

As a psychologist, I have a view into lots of people’s lives. I am here to tell you that the holidays get messy for many people. Dinners get ruined, relatives fight about politics, husbands get drunk and say hurtful things. In other words, Thanksgiving is just like any other day, but with many more people and crushingly high expectations.

It is these high expectations that get us into trouble. Every year, we hope that this year will be different. A little child lives in each one of our hearts, wishing that this year we will finally have that Thanksgiving we always dreamed of. Maybe this year we will feel loved. Maybe this year we will feel understood. Maybe this year Uncle Harry won’t spew horribly offensive comments and our mother will be happy.

However, if Uncle Harry always makes offensive comments, and he and your mother always scream at each other, let’s be clear: That is probably going to happen again this year. There is a chance that Uncle Harry will have attended sensitivity training, or that your mother will have embraced transcendental meditation. But, most likely, Uncle Harry will act as obnoxious as always, and your mother will blow her stack.

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Many clients come to their next session after Thanksgiving, armed with the latest stories of their Uncle Harry and screaming mother. We discuss the events, and I offer sincere sympathy. The thing is, though, people are who they are. If your Uncle has always made insensitive comments, and your mother has always had a temper, the likelihood that their limitations will change is infinitesimally small.

I’m not writing this to be negative; I’m writing it to help you set your expectations.

We get lost in our outrage and upset when our relatives say hurtful things. We protest how unfair it is, that Uncle Harry can “get away” with it. But seriously, people are who they are. Their behavior may truly be outrageous, and terribly wrong. But they will be who they will be, and you can’t stop them. Only they can stop themselves, and let’s be clear: They probably won't.

How to be with your family more peacefully

So now what? I assume you either still want to, or have to, see your family over Thanksgiving. Because of COVID, many of us haven't been able to share a holiday meal together for a long time. Now that we have the chance to actually be together again, here are some strategies to protect yourself and maybe even have a nice time:

Stay Out of the Drama: If you accept that people are not going to change, you will know what to expect, and with that knowledge comes power. Watch for Uncle Harry to start to ramp up. Maybe he has had his second drink. Maybe he saw a racy commercial on TV. Recognizing who Uncle Harry is, you can start to protect yourself. Now would be a good time to walk away. Now would be a great time to take out the trash. Breathe, stay calm, and consider not saying anything at all. It is wiser to let the drama unfold without you. The Calmest One Wins: Keep your wits about you. Do not get roped into arguing. In the moment, you might feel compelled to jump in and fight. But, if you do, you will probably feel even more aggravated and exhausted. Breathe, and walk away. Ask for Help: Are there family members you feel safe and comfortable with? If so, seek them out. Play a game, watch a movie, and relax with them. In addition, it is wise to reach out to friends. I have four friends who always text me during the holidays, and I check up on them too. “How’s it going? Everyone good?” Just those quick check-ins with people who love you can keep you grounded. Take Time for Yourself: Can you get away from the crowd for a while? Taking a walk might be helpful. You can even be the person who runs to the grocery store for more milk. That way, you can help and also get away for a breather. Stay Somewhere Else: Speaking of getting away, is it possible for you to stay at a nearby hotel? Having the chance to visit, and then get some time away will help you stay clearheaded. It is hard to remain calm when you stay with family for days on end. Staying at a local hotel will give you the opportunity to shake off any tension or disagreements. It will also give you the chance to… Exercise: and to… Breathe

I hope that you have a beautiful holiday. It probably won’t be close to perfect. But hopefully, you will have a nice meal, some time away from your responsibilities, and some meaningful moments with loved ones. I hope you enjoy seeing your family back in the same room again, after all these months of social distancing. I hope that there are moments of calm when the sun shines through the window and the apple pie smells enticingly through the kitchen. May your football team win. May you feel loved.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader

Somewhere Over My Rainbow(s)

(Part 4 in the series Choosing More Surgery)

I have always loved “Somewhere Over the Rainbow.” I identify with Dorothy in The Wizard of Oz, the neglected girl who was being bullied. She ran home looking for help, or for someone to just listen to her. “Find yourself a place where you won’t get into any trouble!” her Auntie Em snapped instead. Compliantly, Dorothy sits down with Toto, her terrier, and sings the most beautiful song ever sung.

Now I have my own rainbow. In fact, I have two of them.

My grafts have “taken.” Burned people know what I mean when I say that, but other readers won’t. My tight torso was surgically opened 49 days ago. My surgeon, the brilliant Dr. Eberwein, designed two huge grafts, which are shaped like… two rainbows. Each rainbow starts at the center of my waist, arches under my breast line, and descends back to each flank. Together, the rainbows are 22 inches long and 1 inch wide. They stretch bright red but a bit scabby across my middle.

Dr. Eberwein means well but like all surgeons, she wastes no time. After a recent consultation, she was heading out the door when I pointed to my rainbows and inquired, “Why this design?”

She smiled and came back. I guess all artists (and Dr. Eberwein is truly an artist with scars) enjoy being asked about their work. “You needed more skin not only around your waist, also more skin length-wise. The new grafts are surrounded by as much old skin as possible. This will reduce shrinkage and improve healing.”

I will say, not everyone has two rainbows around their middle. I am a staunch LGBTQ ally, but this might be taking it too far.

Anyway, as I was saying, my new grafts have “taken.” The staples are out, and the new skin is knitting itself into the old skin. I won’t “lose” them, which is what happens when the body rejects and sheds the new graft all together. Tragically, this can happen to burned people, although it doesn’t usually happen to me.

Am I done? No, nothing like it. My rainbow grafts lie protected under gauze pads, held in place by “burn net.” Burn net is like a soft white cotton tube. When you pull it apart, the tube expands and expands like magic, until it fits over your arm or leg, or in my case, my entire torso. Then the net contracts to hold the gauze pads in place. Burn net is like that child’s toy, the one that starts like a little ball, but when you pull on it, it expands into a delightful giant globe. Burn net is decidedly unlike that toy in that it isn’t cool and doesn’t spark joy in the least.

Then there is my donor site. The very words “donor site” strike dread in any burn survivor. “Don’t touch my donor site!” I snap at my husband. “That’s my donor site!” I warn, too loudly, when my friend hugs me.

A donor site is the place where non-burned skin gets farmed. The surgeon removes some non-burned skin, which then covers the graft. The donor site is the most painful wound. The graft is not usually too painful, because it is new skin, still establishing neural networks, blending itself into a deeply scarred area, which usually has damaged nerves to begin with. Not the donor site. The donor site comes from a non-burned area, with all nerves fully intact. The top layers of skin are peeled away for the graft, leaving a wide swath of deep scarlet wound which must heal over the next few weeks.

Burn care has advanced a long way from 1967, when I was injured. When I was a child, the donor site dressing changes were tortuous. Blood-caked bandages were ripped off the open donor site, as I literally screamed in pain. All the burned kids endured this donor site dressing change, twice daily. It remains the worst physical pain I have ever experienced.

I have produced one kidney stone and two perfect babies. I have had countless donor sites. No pain compares.

Current donor site technology is much improved. This time, my wound is coated with a protective seal. On top of that is a loose netting. On top of that are gauze pads. On top of that is more burn net. Thus protected, my donor site doesn’t hurt much, and there are no dreaded dressing changes at all.

Today I was finally cleared to take a shower, my first shower in over 6 weeks. Lest you think otherwise, I did take sponge baths in the meantime and wiped myself down with various cloths. These cloths felt like giant wet-naps on my body, but they left me feeling clean(ish). Washing my hair proved to be more complicated. It took a team of a professor (my husband), two psychologists (me and my friend) and one occupational therapist in training (my daughter) to devise a workable system. This system involved a bathroom sink, one watering can, one spray bottle, one shower chair and me, wearing my gray waterproof raincoat, while my daughter shampooed my thick hair, carefully tiptoeing around my wound vac.

This morning, I stepped out of my burn net, pulled off my bandages, and padded into the shower. Initially, the water stung my fragile donor site, so I sidled in cautiously. But I adjusted, and the water began to feel awesome. I soaped myself again and again, watching scabs and tiny bits of gauze fall away. I imagined my body shedding the last two months: five nights in the hospital, two long surgeries, blood, vomit, insomnia, pain. I watched it all slip down the drain.

I stayed in the shower for 30 minutes, until all the hot water disappeared.

I hoped I might be completely healed in 7 weeks. However, it turns out that I am not done. The last time I saw Dr. Eberwein, she informed me that we were now “on the second stage.”

Oh no, I thought, I didn’t know there was a second stage.

“Now we work on keeping the grafts from shrinking. (Yes, grafts shrink, if you are lucky enough for them to “take.” All grafts shrink, at least somewhat.) “So, you need to put cream on them twice a day and massage them gently. And let’s do a laser in three weeks.”

That laser was unexpected, unwelcome news. Every time I am lasered, it requires general anesthesia, a dreaded IV insertion, pain medication, and days of recovery. I can’t work afterwards. I am hot, itchy and uncomfortable for days. I didn’t want to do another laser. Not now. I’m just getting over all of this.

Honestly, I could have cried.

“OK,” I replied instead.

Burn care has come a long way since the 1960s, at least in this country. The physical pain is much better managed. Visitors can stay with you all day. Wound care technology has advanced. The lasers work magic on scar appearance.

But let me be clear. Being burned still stinks. I have one of the best surgeons, and one of the best burn teams. I have a husband who did everything possible for me, changing my bandages like a ninja, fretting about infections, tucking me in every night. Like Dorothy, I had dear friends who journeyed with me. Two friends stayed at the hospital with me for days, bringing me food, arranging my pillows, putting on my socks. Before discharge, one of those friends even grabbed my vomit tray when I was done heaving, and convincingly responded, “It’s OK, I don’t mind.” Another friend drove me to appointments and gave me Reiki treatments. Others brought meals, mailed cards, sent flowers, made calls. Like Dorothy, I even have my own loyal terrier companion, my little Frankie. I have so much going for me. I am grateful, but let’s be clear. It still stinks.

Yes, sometimes life stinks. Remember Dorothy? She was alone, neglected, and being persecuted by a neighbor who transformed into a witch. In the end though, all Dorothy wanted was to be back home. Even though her family disappointed her, her dog might be seized, and her landscape was in black and white. Life is like that. Good and bad. Easy and hard. Blessings and curses.

At least now, I will always now have my rainbows, these rainbows which make it so much easier to breathe and make every moment more comfortable. I will have worked hard for them, a lot harder than most people work just to be able to breathe comfortably. But this work is almost done.

(For more on this series "Choosing More Surgery, see Part I , Part 2 , and Part 3 .)

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader