Lise Deguire's Blog, page 3

Dreams Past; Goals Ahead

“A goal is a dream with its work boots on. A goal is a dream you’ve decided to make real.”

Rachel Hollis.

I turned 60 last month. Applying a sunny lens on my health and my genetics, I now stand in the final third of my life. I’m generally OK with that. Still, on a brisk walk with my dog Frankie, I found myself contemplating all the lives I did not lead in the past 60 years, all the dreams that I once had. Here is a partial list:

Pediatrician: Like many medically challenged children, I once imagined I would be a physician, helping other kids in need. It all made sense until high school when I encountered the academic towering brick walls named biology, chemistry, and calculus. The dream took another dive when I met Janine Slowinski, my dear friend who did become a physician. She worked far more diligently than I, becoming valedictorian of our class. I was more … relaxed (underachieving would be an alternate word). If Janine’s effort is what it took to be a physician, I was out.

Actress: To this day, people who knew me in high school occasionally kvell about my performance as Anne, in The Diary of Anne Frank. I could act, back in the day, and dreamed of pursuing this professionally. Somehow, I was blind to the fact that being disfigured would make acting extremely challenging, and no one discussed this problem with me. What eventually stopped me was an awareness that I was not sturdy enough to face the endless auditions and rejections of acting life.

Flutist: In junior high school, I was a good enough flutist to audition for the Julliard Pre-College program. I was not a good enough flutist to be admitted. I was also never interested in practicing an hour a day, let alone the five hours that most professional musicians endure.

Being a classical musician was more my mother’s dream than mine. My mother had been a brilliant concert pianist. She encouraged me, as I did have skill in interpretation and musicianship. But I was too social to spend hours alone practicing like my mother did when she was young. I really just wanted to have friends.

Someone who is admitted to Ivy League Colleges: When I was a senior in high school, my dream was to attend Yale. I knew it was a long-shot, being an A/B/even occasionally C student (hello pre-calculus!) and rather beguiled by alternate substances at the time. When I met with my guidance counselor, I planned to work up to confessing my Yale dream, so I warmed up with, “I would like to go to Tufts.”

“Tufts!” He exclaimed, “That would be a serious reach for you. Tufts?!”

At this point, it felt ludicrous to even mention that my real dream was Yale. I went home, compliantly applied to Tufts early decision, and was accepted. I loved Tufts, received a world-class education and made lifelong friends there. However, I have always wondered if I could have gotten into Yale if I had only tried.

Side note: Decades after high school, I spent an afternoon with the aforementioned valedictorian Janine Slowinski. We started talking about life regrets. I mentioned that I regretted not working harder in high school, because maybe I could have gone to Yale. Janine took a beat, smiled, and replied, “You had a good time though, didn’t you? And you accomplished everything you wanted to. So, I would say it all worked out.”

Perhaps she had a point.

A tap dancer: The first great love of my life was Gene Kelly. It didn’t matter that I never met him or that he was 60 years older. I knew every word to Singin in the Rain. I figured that I too could be a good tap dancer, if I could just take lessons. Gene made it look effortless.

Several years ago, I took those tap lessons. Despite my sunny confidence, I turned out to be barely mediocre in the beginner’s class. When the beginners class transitioned into fast-paced regular adult tap, I flailed, forgetting the few steps I had recently learned. I dropped out after three weeks.

Someone who owns a huge house on the water: I feel bad about this one. Our home is a perfectly lovely four-bedroom colonial and I have no need to ever want more. But on my walk today, I passed a stately four-story gray stone house high atop a hill, with banks of windows overlooking the verdant Delaware Canal and I sighed.

A Guest on Oprah: I truly think Oprah would love my book, Flashback Girl, if she could only hear of it. I have tried everything I can think of to get the attention of the Harpo people, but to no avail. I also am apparently destined to never be on The Today Show or be published in the New York Times. I will keep trying because I am just that stubborn, but folks, it’s tough out there.

I just told my husband the topic of this blog. “That’s a little bleak, huh?” he responded. But it is bleak? I’m 60. I’m here!

I think it is vital to both have dreams and to articulate them clearly. Putting words on what you want will help clarify your goals. Having clarified them, you are far more likely to make the steps toward making those goals happen. Achieving a long-term vision involves taking hundreds of little steps in the right direction. Being 60 may narrow down my options, but I still dream. Here are my current goals:

I will set my feet on every continent: I have traveled to five out of the seven continents, most spectacularly in Antarctica last year. I still need to visit Asia and Australia, and then I will have accomplished one of my biggest dreams.

I will set my feet in all 50 states: Thanks mainly to three Deguire family cross-country trips, I have visited 44 states. My brother Marc made it to 42. My father got to 48, and my mother made it to 50. I’m looking to see all 50 too. This will entail travel to Hawaii (not a sacrifice!), North and South Dakota, Alabama, Mississippi, and Louisiana.

I will give a TEDx talk: And I will! I applied for a number of TEDx talks and was rejected each time. So this was a tough goal to meet. However, I was recently accepted to deliver a TEDx talk at Widener University on September 28, 2023, and I am thrilled.

I will work to achieve the highest possible readership for Flashback Girl: My book was published 30 months ago, and I still speak about it regularly, around the country and even recently in New Zealand. I love sharing the book’s messages of hope, resilience, love and helping each other through challenges. Readers have told me that the book carried them through crises, sometimes even crediting it with keeping them alive. I believe the book has power to help many more people, and I do my best to support its readership, one talk and one article at a time.

I want to improve representation of disfigurement: The entertainment industry often uses disfigurement in characters to symbolize evil (Darth Vader) or lovelessness (Hunchback of Notre Dame). These negative representations are prejudicial and do harm to those of us who look different. Together with colleagues, I have been writing, speaking, and working on this issue. I think we can change Hollywood's stories of disfigurement, and I think we can increase the public’s demand for fair representation. Here is a position paper I had the honor in helping to create, along with Face Equality International, The Phoenix Society, and Facing Forward. And here is an interview I just did with Jay Ruderman, on The Ruderman Foundation podcast, All About Change.

I might write another book: I’m not sure. Many readers have asked me when my next book will come out. For years I have been too busy speaking and presenting about Flashback Girl to have time to write. Also, what do I want to write about? I have many ideas, but no clear direction. Do I even want to go through all this again? We shall see.

I want to speak on NPR again: And I just did! Here I am on Growing Bolder (my interview starts around minute 20).

I want to meet my grandchildren: I can’t even imagine the joy of my beautiful daughters having their own beautiful babies.

I want to attend a writers’ retreat: I dream of staying in a cabin in the woods on a lake, focusing on writing for a month, surrounded by other authors who are doing the same. I have no idea where I would do this, but surely there is such a thing.

I want to sing with my friends: I spent many joyful hours in high school singing with my best friends, Joe, and Sue. Recently, Joe started writing songs, and we have resumed singing regularly again, which is the happiest thing on earth. I love the sound of our voice together. I also love the simple pleasure of being with Joe and Sue, whose dear faces flood my heart with joy. Every rehearsal contains a moment when we laugh so hard and so long that we clutch our bellies, giggling and chortling like kids again.

So those are my goals: traveling, speaking, writing, presenting, singing, and being with friends and family. At 60, many doors have closed, but there are more miles in the road ahead.

What are your goals and dreams? How much time do you have left? Are you working to make your dreams a reality? No matter how old you are, you can be active and involved. Every day you are alive is an opportunity to achieve, accomplish, assist, or give back. Join me.

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 Problem with "Women Talking"

Sarah Polley’s Women Talking is a beautiful ensemble piece, in which women gather to discuss how to handle a violent crisis. The conversation flows around themes of forgiveness, revenge, love, religion, sisterhood, parenting, responsibility, and the power of the collective. The film is deservedly nominated for two Academy Awards, including Best Picture.

Women Talking inspired and uplifted me, but also made me sad. An angry woman is played by the incredible Frances McDormand, her perfect face featuring a prominent prosthetic scar. McDormand’s character cannot tolerate the discussion and becomes alienated. Quickly, she leaves the group of sisterhood and retreats into dark solitude, friendless. Her name is “Scarface Janz.”

“Scarface Janz” is only the latest film character whose facial scars signal that she is troubled, dangerous, or pathetic. As a childhood burn survivor and disfigured woman, I have seen movie after movie in which the villain is disfigured: Return of the Jedi (Darth Vader), Nightmare on Elm Street (Freddie Krueger), The Lion King (Scar), Harry Potter (Valdemort) to name only a few. Just as with Frances McDormand, it is virtually impossible to find disfigured characters authentically played by disfigured actors. But much worse, disfigured characters are almost always portrayed as mean, villainous, or unloved.

These negative representations of disfigured people have a real-world impact - inflicting pain and stigma on an already oppressed group. Unconscious bias tests have shown that people have a strong bias against the disfigured. Disfigurement (or “facial difference” or “visible difference”) is relatively unusual, so most people have never known or loved a person with a conspicuous facial scar. Frequently, the only time people encounter a person with a facial difference is on a screen. If most of these characters are unlikable antagonists (which they are), it is no wonder there is prejudice against the disfigured. Little known fact: one third of disfigured people report they have been victimized by a hate crime. Stigma is dangerous.

The entertainment industry has made impressive strides in improving representation of other marginalized groups. Moonlight and Black Panther are far cries from Gone with the Wind. Gay people, Asian people, Native Americans, and people with a mental illness may not see enough positive films about their experiences, but the industry no longer releases film after film reducing them to pathetic stereotypes. They are also unlikely to see characters named for their disability. For example, there is a blind girl in Women Talking. But unlike “Scar” in The Lion King, or “Scarface Janz,” the girl isn’t called “Blind Janz.” Everyone rightfully recognizes this name would be offensive.

Unlike other marginalized groups, the disfigured community has not seen improvement in representation. In the past two years alone, Hollywood released The Batman, featuring the Penguin, played by Colin Farrell, with a prominent facial scar, and No Time to Die, in which Rami Malek played yet another James Bond villain with a heavily scarred face. Now we have “Scarface Janz.”

Part of the problem is simple ignorance. Film makers seem unaware that they continually use the scar trope to represent villainy, and that it is a form of prejudice. The general public is equally unaware. When I speak about this problem, pointing out how routinely villains are disfigured in movies, people are genuinely shocked. This negative representation is so ingrained and so common that you probably never noticed it.

Women Talking is a beautiful film, making important points about overlooked female perspectives, the power of non-violence, and community action. I loved almost all of it. I just wish that Scarface Janz got to be a part of her community, instead of being left in the dark all alone. I wish she weren’t so pathetic. I really wish that she had a better name.

My biggest wish of all is that you will start to notice these sad/lonely/evil/sinister/pathetic scarred screen characters. Help raise people’s awareness to these representations. We can do so much better.

by Dr. Lise Deguire (not “Scarface Deguire”)

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.

Disfigurement: A Call for Awareness

(republished, with permission, from the Pennsylvania Psychologist)

When I was four years old, I survived a fire which burned away my lower lip, chin, and neck, permanently scarring two-thirds of my tiny body. Over decades, I have endured approximately 75 procedures, vastly improving my appearance but still leaving me noticeably scarred. I am also a clinical psychologist, author, and speaker.

The disfigured community, of which I am a proud member, includes people with acquired disfigurement (survivors of burns, accidents, cancer, etc.) and people born with disfigurement (birthmarks, cleft palates, neurofibromatosis, etc.). We endure unwanted staring, social avoidance, bullying, discrimination, dating challenges, and on-line harassment. Alarmingly, a UK survey of more than 800 disfigured people found that one-third of the respondents had been the victim of a hate crime (Changing Faces, 2017).

Disfigurement is a condition whose damage can be vastly ameliorated by social acceptance. Yes, there can be trauma associated with disfigurement, and self-image issues. Psychotherapy can be helpful in treating these conditions. However, many people report that their biggest issue is how others see them, which is not something that psychotherapy can fix.

Film and TV strongly contribute to the problem. From an early age, many children watch movies in which the villains are portrayed as scarred or somehow wounded. Beauty and the Beast features a character (Beast) who is rendered hideous when he is mean and restored to handsome when he learns to be kind. The Lion King features an antagonist who is literally named Scar, for his facial wound. Darth Vader, in Star Wars, is eventually unmasked as a burn survivor. Voldemort, in Harry Potter is another disfigured villain. Repeatedly and relentlessly, disfigurement is used as a cheap trope to signal to the audience that a character is bad.

Is it any wonder that people are biased against the disfigured?

Until recently, prejudice toward the disfigured was hypothesized to be innate, due to an in-born fear of “catching” whatever affliction caused the damage. Recently, however, Dr. Workman proved otherwise. Working with a hunter-gatherer tribe in Tanzania, he found that people unexposed to Western culture did not harbor negative feelings toward the disfigured. Thus, we now know that negative attitudes about disfigurement are learned in society (Workman, C., 2022).

Dr. Kathleen Bogart (2020) developed a model of three mindsets used to explain disability/disfigurement: moral, medical, and social. The moral model posits that disability represents punishment for moral failure or sins. This moral model shows up repeatedly in the negative film/TV depictions of scarred characters.

The medical model says that disfigurement is caused by medical issues, which are the patient’s burden to treat and heal. However, most disfigurement cannot be truly healed, only ameliorated. The medical model also leaves the burden of the disability/disfigurement entirely in the hands of the patient and their doctor (Bogart, 2020).

In contrast, the social model states that disability is a social issue, which we should all work together to improve. The problem does not lie with the disfigured person; the problem lies with the world around the disfigured person (Bogart, 2020).

Lest that sound too idealistic, think about people who need reading glasses, which likely includes many of you reading this article. Many people are far-sighted, which is actually a disability. However, minor visual issues are not considered to be a disability, because society has adapted. We can wear eyeglasses, which we can easily purchase at the drugstore. As we age, we can even change the fonts on our cell phones and use a flashlight to brighten the seemingly ever-shrinking menu. There is no negative stigma for far-sighted people, even though truly, they also have a disability (Bogart, 2020).

Disfigured people are not sitting around “waiting on the world to change.” The community of burn survivors is capably led by the Phoenix Society, which offers many resources on social re-engagement, coping with staring, dating, discrimination, and all the pitfalls awaiting those who look different. We learn how to hold our heads high, make eye contact, be friendly, and engage people who might otherwise shun us. These coping skills are crucial to help the facially different lead empowered lives.

Still, the burden should not rest solely on the shoulders of the facially different (a term many of us prefer). Like other marginalized groups, it should not be left entirely to us to convince society to treat us better.

I frequently present to schools and workplaces about disfigurement issues, beginning with how we are portrayed on screen. I show photos of Freddie Krueger, Scar, The Joker, Voldemort, The Beast, The Phantom, and Darth Vader. The most frequent reaction from the audience is astonishment. Most people have sincerely never noticed these unrelenting negative portrayals of scarred characters as being evil. That is how pervasive this trope is. It is so pervasive that you probably never thought about it.

There are simple ways to help. If you see a scarred character in a film who is evil, point out this prejudice to others. Educate your children. The more people who notice the bias the better; that is how bias becomes societally unacceptable. That is how change can begin.

People frequently ask me how to talk to someone who is disfigured. I scratch my head, because the answer is… the same way you talk to anyone. Be warm, make eye contact and introduce yourself. Do not immediately ask “what happened to you?” For context, imagine that you are consulting a psychologist for an initial meeting, and you are also obese. You might expect, at some point during the session, the psychologist would inquire about your health, which would include your weight problem. However, you would definitely not want the psychologist’s first question to be, “How did you become so overweight?”

Like everyone, facially different clients first need a strong connection with their therapist. Clinicians must be attuned listeners to truly understand the world of disfigurement: the pain of being stared at, the bullying, the fear of dating. Once that therapeutic bond is established, psychologists can help their clients in many areas: self-image, self-confidence, socializing, and peer group connections.

At times, clients may overly interpret social rejections as being entirely due to their disfigurement. A trusted clinician can point out that normal-faced people are also occasionally rejected, and that rejection can be a universal, albeit extremely painful, experience. Clinicians can help prepare and practice responses to intrusive comments. “What happened to you?!” is a common question for the facially different. Feeling prepared for this question can lower anxiety about socializing. Additionally, clinicians can use their usual therapeutic tools to treat social anxiety, post-traumatic stress disorder, insomnia, and depression, all of which can be associated with disfigurement.

It is vital to remember, however, that many of the difficulties disfigured people face are due to how others treat them, due to prejudice, and not necessarily to any prior psychopathology to the client. This is parallel to how we conceptualize minority clients who are dealing with racism. Help your client to conceptualize these social problems as existing outside themselves and help them develop appropriate coping strategies.

Behind the scars or misshapen features, the facially different are, of course, just like anyone else. We are most assuredly not evil. We long for warm inclusion, and to be welcomed for the “content of our characters,” as the great Dr. King once said. Your awareness can help.

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.

References

Bogart, K. R. (2020). 3 models underlying assumptions about disability. Psychology Today. Retrieved August 15, 2022, from https://www.psychologytoday.com/us/blog/disability-is-diversity/202011/3-models-underlying-assumptions-about-disability

Changing Faces. (2017). Disfigurement in the UK - changing faces. Changing Faces. Retrieved August 15, 2022, from https://www.changingfaces.org.uk/wp-c...

Deguire, L. (2020). Flashback Girl: Lessons on resilience from a burn survivor. Dr. Lise Deguire, LLC.

Deguire L (2021). From Tragedy to Resilience: One Psychologist’s Journey. New Jersey

Psychologist, 71 (2), 9-16.

Workman CI, Smith KM, Apicella CL, Chatterjee A. Evidence against the "anomalous-is-bad" stereotype in Hadza hunter gatherers. Sci Rep. 2022 May 24;12(1):8693. doi: 10.1038/s41598-022-12440-w. PMID: 35610269; PMCID: PMC9130266.

How NOT to Turn Into your Parents

My grandmother “Memere” sang every morning as she opened her lace curtains, welcoming the sun into the bedroom we shared. Her chirping song annoyed me because I longed to sleep in. Forcibly roused, I would slump at her kitchen table, watching her burn my toast, while she hummed cheerfully. After breakfast, she bustled outside, tossing seeds to the robins and cardinals she loved, singing all along.

At the time, I thought I should be able to sleep later, eat better, and be spared her incessant cheerful tunes. I didn’t also give a hoot about those silly birds.

Decades later, I am a morning person, cheerfully waking with the sun, opening my own curtains with a smile. Decades later, I walk around my own house singing, sometimes the same show tunes that she once warbled. I’m also not much of a cook, although to be fair, I can achieve toast.

Recently, I downloaded an app which identifies my own backyard birds by recording their songs. “Listen Doug, it’s a Black-capped Chickadee!”

How did I become my Memere?

I smile to see parts of my Memere in me, but I cringe when I find parts of my mother. She was a snob, sniffing her nose at pop music, disinterested in sports and popular culture. I too can be a snob, scrunching my face disapprovingly at Tik Tok videos while everyone else laughs. Like her, I cannot listen to anyone singing or playing an instrument without immediately judging if they are in tune, and, usually, declaring my verdict aloud.

Snobbery was not the worst of my mother’s maternal sins. Who refuses to visit their critically wounded daughter in the hospital? Who accidentally sets their daughter on fire, and never expresses remorse about it? Who ignores their son’s suicidal statements, despite having a doctorate in psychology? That would be my mother, Kathryn.

Here is a story I have never shared. When my daughter Julia was 18 months old, a bee landed on her tiny hand. We were in the backyard together and I stood right next to her. Bees terrify me. Aghast, I watched the bee alight on Julia’s right hand and saw a delighted smile spread across her precious face. Then, ever curious, my daughter pushed her left index finger down on top of the bright yellow bee.

I took one small step back.

The bee stung her.

I reached in to grab my daughter, put antibiotic cream on the sting, and comforted her. A tidal wave of self-loathing crashed over me. How did I not scare away that bee? Why did I watch it happen? How could I step away? Yes, I have always been terrified of bees, but why was I not braver? Was I just like my mother?

I have never admitted that moment to anyone, that is how ashamed I felt. Inside me, a massive alarm shrieked. WATCH THIS PART OF YOURSELF, LISE. Watch out! To give myself some credit, I never behaved that way again, to my knowledge. The self-hatred of that moment motivated me powerfully.

We are ourselves, and also, we are our ancestors. Sometimes we treasure their imprints and sometimes we fear them. Some people have had loving parents and would be overjoyed to resemble them in any way. However, many of my clients were abused or neglected children. Many of them started therapy after they became parents themselves. Full of love for their baby, exhausted from sleepless night, they were terrified at repeating history. Their therapy focused on their fearful memories of their father drinking, or their mother spewing hateful comments.

“I don’t want to turn into my mother.”

Therapy helps tremendously. Without therapeutic insight, the past shapes our thoughts and behaviors beyond our awareness. Therapeutically examining our past hurts and formative experiences helps us understand that we have suffered, and our suffering has affected us, sometimes for good, and sometimes for bad. That awareness can be painful, but it comes with a new superpower: the power to act differently. Psychotherapy is often hard work, and takes a long time, but it forges powerful, lasting change.

I strive to keep the good parts of my mother, while letting go of the rest. I hold my hands at the piano exactly as she once taught me, wrists up, fingers curled. My hands are her hands which makes me smile. When I deposit money into the IRA she set up for me, 50 years ago, I credit my mother. When I contemplate how much money I might have had if she hadn’t taken my savings and used it to pay her own mortgage, I try to let that resentment go. Consciousness, awareness, forgiveness… I call on these skills as much as I can, appreciating the good, letting the bad sift through my fingers and fall away.

To some degree, we are all destined to be our parents and our grandparents and probably our great grandparents and so on. Genetics rule. I love the stories of twins reunited as adults to siblings they never knew they had. The “Jim twins” came to know each other at the age of 39, having been raised apart until then. They had so much in common: “Both had married women named Linda, divorced, and married women named Betty; both suffered from bad headaches, smoked Salem cigarettes, drove blue Chevrolets, and had named their first sons James Alan and James Allan (Carothers)." Every physical ailment I have (non-serious, but a 59-year-old body has its issues) can be traced directly to either one of my parents, and often to my grandparents. My acid reflux? Thanks Mom. My weak ankles? Thanks Dad.

Am I destined to love birds, to sing in the morning (on key!), to sneer at Tik Tok? Perhaps so. These are also traits that I allow or even embrace.

Am I destined to be a selfish mother who abandons her daughters to bees? Perhaps I once was, but I worked hard to change those tendencies, finding the twisted roots in my character, yanking them out with force, weeding again and again until the roots shrink away. I work hard, embracing mindfulness, allowing criticism, staying humble.

Besides therapy, there is one more way to avoid becoming the worst aspects of our parents. It is, however, a way that everyone loathes. Allow criticism. If your husband says, “You are acting just like your mother,” you most likely respond, “How dare you say such an awful thing! No, I’m not, and you are an asshole.”

In the best of all worlds, our partners function as mirrors for us, letting us see aspects of ourselves that are both awesome and loathsome. So, assuming that your partner is trustworthy and loving, if he says you are acting just like your mother, instead of protesting, you could ask yourself, “Am I?” If your child accuses you of the same selfishness that you hated in your father, you can quietly wonder, “Am I?”

Criticism from those who truly love us is actually a great gift, albeit the despised fruitcake of all gifts. Our close friends and family can alert us when our behavior is veering toward our parents in ways which are unhealthy.

If you do find that you are acting like your (insert your family member here), pair your awareness with compassion. Genetics and early-childhood experiences have a powerful magnetic pull. Sometimes we will act like our parents, even with the best intentions and the best therapists. If that happens, your greatest tool is simple awareness. Note that you acted like your mother, but you didn’t mean to, and you intend to do better next time. Breathe and forgive yourself. Keep trying.

Therapy, well-intentioned criticism, mindfulness… these are the best tools to avoid the genetic traps in our DNA. My traps are self-absorption, haughtiness, and selfishness. They linger in shadows for me, these dark traits of my parents which they were unable to conquer. I try to greet those treacherous paths, acknowledge them, but consciously go down different roads. At the same time, I treasure the Deguire good stuff: the joie de vivre, the friendliness, the musicianship, the culture, the verve. I pull at different strands of DNA, inviting them into the light, honoring the good as best I can. It is constant work, weeding away the dark, welcoming in the light.

But I did hear the birds singing this morning. And if you need to know who’s in tune, just ask me.

Carothers, K. (2020, January 9). Twins separated at birth: 12 real stories that will give you goosebumps. Reader's Digest Australia. Retrieved December 29, 2022, from https://www.readersdigest.com.au/true...

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.

Christmas Angels Among Us

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 here 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. 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? Perhaps 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 appearing when a suffering person needs help.

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

Here is what I think now. 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.

Hallelujah for the angels.

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.

I Refuse to Participate in this Nonsense

“Rat-a-tat tat, rat-a-tat tat, rat-a-tat tat,” An ancient cassette slowly spun in a tape player, miraculously still functioning.

“Rat-tat tat, rat-a-tat tat, rat-a-tat tat,” the sound rang out, wooden drumsticks striking metal.

“That’s your brother!” Jerry said, smiling broadly at me. “That’s Marc playing.”

“Whoa…” I responded, suddenly breathless.

50 years ago, Jerry was one of my brother’s high school marching band friends. He was a tall broad senior when my skinny brother joined the band as a freshman. Marc, never easily impressed, loved his new fellow drummers, Jerry, Jerry, and Henry. They were smart and capable; people my brother admired (rare for him). They all played snare drum, the most coveted position in the drum-line. Freshman Marc played the tenor drum, but he aspired for promotion.

Jerry had reached out to me a few weeks ago. In his deep, warm voice, Jerry said, “I have something I think you want to hear. It is just one small sentence. But I have your brother’s voice on tape. Can we get together?”

I don’t have any video footage of my brother. I don’t have audio tapes. I barely have any photos. So, when Jerry said he had a tape of Marc’s voice, I would have sailed the Atlantic Ocean to hear it.

More conveniently, we met for lunch in Clinton, New Jersey, near where my dad used to live. I remembered Jerry well, even though it had been 45 years since we had been together. We both knew that day precisely, the day of my brother’s funeral, the day my earth stopped spinning.

Instantly familiar again, we shared sandwiches in a local restaurant. Jerry began, “So, I need to share the background on this tape, before I play it. It was recorded on a school trip bus ride, in the early 1970s. One boy was conducting mock interviews. You will hear him, along with a bunch of us goofing around. But the thing I want to explain are the jokes being made.” He paused. “It is basically an extended gay-bashing theme.”

I looked at Jerry, aghast.

“It was a long time ago, and the band, especially the drum-line had a hyper-masculine vibe. We teased and called each other “gay” on this tape. You will hear that. Everyone was a part of it. Well, not everyone, but most people were. Things were… different then.”

“I remember, the 1970s were another time.”

“Yes, but you need to hear how Marc responds.”

Lunch concluded, we walked out to the parking lot. I climbed into Jerry’s truck, heaving myself up the high step into the front cab. Jerry settled in and started fiddling with the tape. The marching band played, he hit fast forward. A rehearsal was in progress, he hit fast forward again. “I’ll find it.”

“Rat-a-tat tat”

“That’s Marc! You will hear him drumming and drumming.”

I grinned. I could hear Marc’s drumming, firm, even, and confident. This was the first time I heard him playing for 45 years, but there he was… a miracle.

“Marc was always practicing the snare drum part. He knew his double tenor, but he wanted to move up. That line, the one he is playing, that’s the snare drum line.”

Then an unfamiliar voice came on. I won’t quote him or identify him. Undoubtedly, the man who was once that boy would no longer utter these slurs. But the time was indeed different then. Suffice it to say the word “gay” was invoked relentlessly, in a high-pitched effeminate voice. Much guffawing ensued.

But then the "interviewer" said…. “Last, we come to a very nice boy, Marc Deguire.” He paused, waiting for Marc to respond, to join in the "fun."

Over the ancient tape, I heard my brother. His voice was high pitched, just a boy’s voice. Still, Marc spoke decisively, his voice calm and steely, “I refuse to participate in this nonsense.”

***

From my earliest days, I adored my brother. One of the only photos of us was taken when I was about 9 months old, and he is 5. I am sitting on the potty (yes) and turned to gaze at Marc, my baby face beaming with adoration.

As I got older, I trailed him like a love-sick puppy. I would do anything he asked. My fixated devotion lasted for 3 years, until one day, I rebelled. I don’t know why; for some reason, one day, I stopped following orders. My father teased that Marc actually wept with frustration, because his little sister refused to do what he commanded, for the first time, ever.

That toddler rebellion probably lasted one day. Until he died, Marc was my highest authority, my favorite person, my best parent. My hero worship was so intense, and my loss of him so young, I have often wondered whether Marc was as remarkable as I remember.

Since my book, Flashback Girl, came out, Marc’s old friends have reached out to me, one after another after another. One of the great joys of my life has been hearing their stories and memories of him. To a person, they all reassure me. Yes, Marc really was that special. This precious tape, the only known recording of Marc’s voice, offers proof.

Think about it. Marc was a lowly freshman on this trip. He was a skinny hippie with glasses, long hair, and acne, on a bus full of older, stronger boys. He had no claim to status, no assurance that he wouldn’t be taunted. Marc was also straight and this was not his fight. It was 1972, when virtually no one was conscious of LGBTQ rights. Making fun of gay people was so commonplace that hardly anyone even noticed it. If Marc stood up to gay bashing, what were the odds that he himself would be bashed?

Wouldn’t it have been easier for him to go along with the “fun?” To make a little joke, to accommodate a bit? Instead, in a high voice, with complete calm, Marc emphatically stated, “I refuse to participate in this nonsense."

What a phrase. “I refuse to participate in this nonsense.” Think how many ways this phrase could be invoked. When we witness cruelty. When someone is being bullied. When lies spew forth, those loathsome “alternative facts.” When we encounter selfishness, intolerance, and hatred.

45 years later, my 14-year-old brother taught me yet again about life, conviction, and bravery. I hope to have his courage the next time I witness thoughtless cruelty. Now I have the right words, because he declared them first. Just like when I was little, I just need to follow his direction.

“I refuse to participate in this nonsense.”

https://video.wixstatic.com/video/0b99e9_b5787adfdec24b579891f7b9570524e1/1080p/mp4/file.mp4

Hit "play" to hear Marc's voice

(Warning: offensive language)

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.

Your Accidental Activist

I generally write these blogs from a deep place, sharing insights and feelings with a bit of literary flair. I lack that time today, so forgive me in advance. However, exciting developments are afoot. Please consider this more of an update, and less of an essay.

Somehow, I have become an activist. This was never my intent. However, my writing journey is full of developments which were never my intent. All I ever planned was to write my memoir. I did not intend to be a public speaker, but now I keynote all over the country. I also did not intend to write a blog, and yet here we are…I am writing this blog and you, blessed reader, are with me.

I definitely never intended to be an activist for Face Equality. Frankly, I had never heard of Face Equality until after Flashback Girl was released. Even as a teenager, I knew that Hollywood unfairly and repeatedly portrayed disfigured people as being villains (Darth Vader, Voldemort, Freddy Krueger, most James Bond villains etc.). Certainly, I have felt the weight of stigma and prejudice all my life. However, I never knew there was an international movement advocating for the equal treatment of facially different people.

I was fully behind this movement, but wasn’t actively supporting it until May, 2022, when I wrote a piece about Hollywood and Face Equality that reached a larger audience. Armed with this essay, on the advice of my high school friend Suzie, I reached out to the Writers Guild of America. From there, I was invited to speak. My presentation was graced by photos from the burn community, many of whom attended the talk virtually. Every one of them volunteered their photo to show that burned people are kind, generous, capable, and decidedly not evil.

I am now on a full-fledged mission, with two major goals. I aim to inform and inspire the entertainment industry to cease prejudicial portrayals of disfigured people. I also aim to educate the general public that disfigured people are being maligned, that these portrayals harm us, that we deserve better and that we are ordinary people, like everyone else. In other words, I want to eliminate stigma against the facially different in the United States.

Like Dorothy in the Wizard of Oz, I have been joined by companions on my unexpected journey. The heads of The Phoenix Society, Face Equality International, and Facing Forward all generously stepped forward, offering desperately needed guidance and wisdom. Recently, I presented at the Center for Neuroaesthetics at the University of Pennsylvania. I sat at a conference room filled with scholars and researchers, many of whom research prejudice against the disfigured. I was nervous; I am no Ivy League researcher. But my story inspires people, and I speak it well. At the end of my presentation, the head of the group, Dr. Chatterjee, kindly offered, “How can we help you?”

Connections are being made. One person introduces me to another, and that one to the next. One group has offered to help us write a fact sheet about disfigurement. Marni, my old friend from my college a cappella group, introduced me to a major philanthropic organization.

Momentum is building, beyond my efforts. It’s been a bit … magical.

Here’s the thing: as soon as people realize how routinely movies and TV shows feature villainous disfigured characters, people are uniformly shocked and aghast.

“I never thought about this.”

"That is awful, how did I never notice this?

“Now that I heard your presentation, I see the prejudice everywhere.”

Once peoples’ eyes are opened, it is easy to convince them that these misrepresentations need to stop, right now.

Think about it. Estimates are that about one in every 100 people has some sort of facial difference (Julian & Partridge). That means most folks are not regularly encountering disfigured people. If you don’t know anyone who is disfigured, the only exposure you will have to disfigured faces is through movies or TV. If those representations are unrelentingly negative (which they are), how can we expect people to have fair impressions of the facially different? Why would we expect anything different?

Hollywood has done an admirable job of updating its representations of other minorities. Black people, Brown people, Jewish people, LGBTQ people, Native Americans, intellectually disabled people, physically disabled people, emotionally ill people, overweight people… efforts have been made to reduce negative stereotypes for all these groups, sometimes even approaching positive representation.

Not the disfigured. Sadly, not for us.

Not yet.

References:

Julian, D., and Partridge, J. (2007). The Incidence and Prevalence of Disfigurement. London, UK: Changing Faces

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.

Marc's Anniversary Visit

Every October, the light changes, the sun hanging lower in the sky. Every October, the leaves flash to orange, yellow and red, and drift lazily downward. The air smells crisp, tinged with mold and decay. October creeps up on me like a wild cat, beautiful but dangerous to me.

I spent last weekend with my dear friends, Susan, Joe, and his partner Larry. Sue, Joe, and I attended high school together, and they are my closest friends from that time. Nothing makes me happier than being with them. And yet, there I was on Sunday morning, suddenly weeping into my bowl of granola and fruit.

We had been talking about siblings. I meant to say, “Marc was such a great brother to me, I really miss him.” Instead, my words came out choked with tears. I didn’t intend to cry, and didn’t think I would.

Joe, Larry, and Susan were of course entirely warm and loving, but I was puzzled. Why did I start suddenly crying? I was having a terrific weekend.

“Oh, it’s October.” And Susan and Joe nodded, having witnessed my anniversary reactions for the past… few decades.

My life is good and I am well. But the light, the colors, and the smells carry me instantly back to October 16, 1977, the day when my beloved brother Marc-Emile took his life. For 45 years now, I have had this “anniversary reaction.” It visits every year.

Many people experience anniversary reactions. The body senses the time by the earth’s clues, the changes in the seasons, the slant of the sun. Even when we are not conscious of the anniversary of our loss, our body knows. These reactions confuse people when they don’t understand what is happening. Many times, though, the clue to the sudden melancholy lies in their history, the date their mother died, the date they became paraplegic, the anniversary of their assault.

In my experience, anniversary reactions are best handled with a combination of anticipation and support. I often help clients plan for these days, and the weeks that proceed them. With the awareness that the day might be challenging, people can visit loved ones, or take the day off, or plan a hike… whatever brings comfort.

The good news about anniversary reactions is that they often seem to be worse in the anticipation of the day. The day itself might be equally painful, but often isn’t. And once the day passes, people usually feel better quickly.

I know you are thinking that this piece is about anniversary reactions, which it is, kind of. But here, the story takes a most surprising turn.

After breakfast, Joe, Sue, and I went to a back room to practice our songs. We have sung together for decades, starting with “Senior Night” festivals at our high school. Susan sings perfectly, soaring easily from alto to soprano. Joe sings in a lovely high tenor. I fit between them, holding down the crucial middle tones with my low alto voice. Our blend is delicious. (click here for a brief sample of our singing). We sing in close harmony, with two guitars. My job is to sing between them, ever-alert to musical issues, keeping time pleasantly on my knees. This weekend, we decided to work on “This Boy” by The Beatles.

For those who don’t know “This Boy,” it is a song about love and loss. “That boy took my love away… but this boy wants you back again… this boy would be happy just to love you, but oh my…” The harmonies are tight, with one impassioned solo in the middle, originally sung by my brother’s favorite Beatle, John Lennon, now by the stunning Susan. The three of us sat close together, brows knitted, learning the chords and the harmonies.

Suddenly, the lights in the next room flashed on. Then, the lights flashed off, then on, then off again. At the same time, the light above us flashed off, then on.

“What was that?” asked Joe. He designed and built this house. He’s an architect, and knows every inch of his own home.

We paused.

“That was Marc,” I blurted out. “He loves The Beatles. I guess he’s here.”

We looked at each other, eyebrows raised and took a moment. Then we got back to work. Maybe it was Marc?

Maybe it was just me, wanting it to be Marc, right?

Later that night, Joe and Larry called me. For background, Joe and Larry have built many houses together. They know much more about how houses and electricity work than I. Larry said, “Lise, I was downstairs in my office. I heard this ‘pop!” sound and thought, what was that? Did we blow a fuse? But when I went checked the fuse box, everything was normal.”

Joe chimed in, “You need to understand. Lights don’t just come on. They might go off by themselves, with a power failure, but they don’t turn themselves on. That light turned itself on, twice. There is no logical explanation for what happened.”

“Right,” I said.

And then I gasped.

***

My brother played the drums. He was good, he was passionate, and he was… loud. My parents, consummate musicians with tender ears, supported Marc’s gift and wanted him to advance as a percussionist. However, the drumming was SO LOUD. There had to be a way for Marc to practice, and for the rest of us to play piano, read, and converse.

Our Glen Ridge house had a cavernous basement with concrete floors and cinder-block walls. Descending the wooden steps, you could smell the damp. On the far end, Marc set up his drum set, blue and silver, cymbals shining under a dim light bulb. He placed his drums as far away from the family living space as possible.

From his room on the third floor, Marc played his records on his stereo (The Who, King Crimson, The Beatles.) He plugged an incredibly long cord into the stereo, which draped down the elegant staircase, three stories down, all the way to the basement. From there, he plugged in his headphones. (However primitive this arrangement sounds in this era of iPhones, it seemed cutting edge at the time.)

Headphones on, drumming in the basement, Marc mitigated the noise as best he could. It was a good solution, and my parents were pleased. But there was one problem. It was impossible to get Marc’s attention when he was playing. He couldn’t see or hear us. The only way to get him to come up for dinner, or to join a conversation, was to climb down the basement stairs, and stand in front of him, waving.

But we had a solution. Anytime we wanted him, I (it was usually me) would open the door to the basement. The basement light had a switch there. I would flip the basement light off and on, off and on, off and on. Alerted by the blinking light, Marc’s drumming would stop. A minute later, he would appear in the kitchen. The way to get Marc, the way to get his attention was to flip the lights, off and on, off and on.

Exactly like the lights magically flipped on Sunday afternoon.

***

It is still October. The light is still low in the sky, the leaves are still changing colors, and their scent drifts upwards. I can still feel the loss of my brother, the aching sadness of his departure. But I don’t feel as bad as I did. I feel like he came to me, blinking those lights on and off, responding to me just the way I used to summon him.

Lights blinking… “Come upstairs, Marc, I need you.”

Lights blinking… “I’m here. I’m here, Lise. I’m right here.”

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.

"Burn Baby Burn"

[Author note: In recognition of this back-to-school time, here is a reprint of my blog about bullying. Many children are bravely returning to school, where bullying can thrive. Even adults face bullies now and then, people who hurt us and wish to cause pain. I hope that these words and ideas help.]

I walked alone down the high school hallway, heading toward my locker. I was a new kid, with no friends. I wore an Indian-print wrap-around skirt and a brown leotard top. My long hair hung down my back in thick waves. I didn’t wear any makeup because I wanted to be naturally pretty. Make up might have helped to cover my burn scars, which swirled on my chin, cheeks, and neck. Scars covered my chest, poking out of the pretty leotard that I wore. But I thought I looked nice. I faced ahead, my burned lip half-smiling. Even though I was new at the school, things were going OK so far. Then this happened:

“Burn, Baby, Burn!”

Four boys walked close behind, serenading me. They sang Disco Inferno, but only that first line. “Burn Baby Burn!” They sang it again and again, in a breathy way, because they were laughing so hard.

I didn’t look at them. I walked faster, as fast as I could. My heart thudded and my chest felt heavy. My shoulders drooped. I looked down, away, hiding my face. I hoped no one would hear and I hoped everyone would hear. What was funny about singing "Burn Baby Burn" to a burned girl?

All I wanted was to fit in. I wasn’t pretending I wasn’t burned. I knew I was. I was pretending the burns weren’t that bad, but that’s how I got through the day. If I thought about my scars all the time, I couldn’t smile, be friendly, make a joke, and do all the things to make the friends I so desperately needed.

If you love a child who is being bullied, there are things you can do to help them. Talk about bullying, and help the child have words for their experiences. Show them that you care deeply about the bullying. Talk to their teachers and ask them to intervene. Teach and model empathy. Practice responses with them. Teach the child crucial social skills. Confronting their bully might help. What always helps is not being alone. Most kids don’t get bullied when they are hanging with other children. Bullying happens the most when a child is alone. I was NEVER bullied when I was with a friend. Not once.

If you see a person being bullied, there is one thing you can do that will make a huge difference. Sit with them. Talk to them. Smile at them. Your presence will have a double impact. First, it will comfort the bullied person, and help them feel less vulnerable and ashamed. Second, and this is crucial, your presence will back away the bully. The bully won’t taunt if you are there too, smiling and being a friend. The bully will slink away.

I wonder about those boys, who are now middle-aged men. Do they even remember singing "Burn Baby Burn" to me? Was it entertaining, watching my spirit shrink and disintegrate? I was trying so hard to be cheerful and to hold my head up high. What was funny about it? Do they still joke about burned girls now? I still can't listen to that song. I hope life has taught them about kindness.

May we all be kind.

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.

Happy To Be “Too Sensitive”

My mother used to tell me, “You're too sensitive.” It was a repeated refrain, deployed when I cried too long or hurt too much. She said it calmly, without malice, although her words stung me like a slap across the face. I cried a lot. I wept on the way home from school, I cried in class at the slightest criticism. I cried at the kitchen table over dinner and in my bed at night.

There was a lot for me to be “too sensitive” about. My very skin was still under laborious reconstruction from the fire. My face was misshapen and discolored from scarring, leaving me an easy mark for any bully with a cruel agenda. I had been left alone in the hospital for months to fend for myself. I needed help.

I used to feel ashamed of this sensitivity. Why wasn’t I tougher? Why did I cry so easily? Why did I get so upset about things that my mother told me weren’t a big deal?

Jerry, my brother’s old friend, recently told me a story from long ago. It was Christmas time, and I was 9 years old. My parents, brother Marc, his two friends, and I were sprawled in front of the fireplace after dinner. The multi-colored lights of the Christmas tree glowed near by, the air filled with pine. My father produced a joint, which was enthusiastically passed around. Either my father or my mother also passed it to me. (Yes, my parents gave me marijuana at the age of 9. Maybe younger?)

Perhaps the weed uncorked me, allowing me to say what I usually suppressed. The Good Girl in me knew my parents didn't like to talk about the hospital. But the Good Girl was stoned out of her nine year old mind. I began to explain my other life in the burn unit, describing my surgeries and bandage changes. The longer I spoke, the more emotional I became. I zig-zagged from hysterical laughing to hysterical crying. Marc and his friends escaped from the room, while my parents tried to talk me down.

“Too sensitive.”

In the long course of my emotional healing, I realized many things. My emotionality made sense. I had been traumatized, abandoned, and bullied, I lived in a permanently disfigured body, and my parents did not protect me. All my sadness and fear came from real problems, which I had accurately perceived, even as a young child. I was not, in fact, “too sensitive.” My issue was that I didn’t have the coping skills (yet) to manage these issues.

Many times, when we deem people “too sensitive,” we are hiding our own limitations. We may not understand the person’s reaction. Perhaps we don’t want to acknowledge their experiences. We may not be emotionally equipped to handle their feelings. I think this is what my mother meant. She wasn’t engaged enough to see the world through my little eyes, so she didn’t understand my triggers. She lacked the ability, and truly wasn't interested in helping me manage my trauma. But instead of honestly owning her limitations, she blamed, criticized, and silenced me.

Therapy helped me have words for my experiences, so I could communicate with others (not my parents) and receive validation. Once I no longer felt “too sensitive,” once I understood myself and felt understood by others, my emotionality lessened. Receiving this validation from people healed me. I rarely cry now.

Therapy also taught me to convey my feelings more adaptively. Instead of dissolving into tears, I could use language, chosen with increasing precision, to manage my problems. I also learned to remain sensitive to others. I realized that other people have their own issues, and I needed to care about them, even when I was triggered.

Decades later, being “too sensitive” turns out to be… awesome! As a psychologist, I make a good living quickly understanding how clients feel, bonding with them, and guiding them toward a healthier path. Sometimes my sensitive right brain flashes images about my clients, images that seem to pop out from nowhere.

“I’m getting the weirdest image in my mind,” I said recently to a tense and overworked client. “I keep seeing your bare feet in the sand. Does that make sense to you?”

“Absolutely,” he responded, “I love to go barefoot in my back yard, it rejuvenates me. But I haven’t walked barefoot in a long time. I have been too overwhelmed.”

“OK then, I think you need to spend more time in a chair out back, shoes off, toes curled in the sand. That might be grounding right now.”

That is my “too sensitive” brain at work.

Sensitivity has become my superpower. I excel at assessing people and picking friends. I have the kind of friends that anyone would want: stalwart, true, empathic, hilarious. My “too sensitive” brain is highly attuned to goodness but also to negativity. A stranger walks into the room and my whole body shudders, “No-no-no-no-no.” I trust these intuitions. They haven’t steered me wrong yet.

My “too sensitive” brain wrote a great book, and this very blog you are now reading. It also guided me as a parent.

My daughter Anna also came into the world wired for sensitivity. She was the toddler who instantly felt if someone was upset. Her intuition was spot on. But just like me, the slightest criticism or hurtful word would dissolve her into a cascade of tears.

My mother would have thought Anna was too sensitive. I thought Anna was perfect. Because of my own wiring, and the healing work I had done, I was emotionally equipped to raise her. I could intuit when and why Anna was triggered. Because I understood her reactions, I could help her understand them too. She learned words for her feelings and received attuned empathy when she cried. I saw her emotional sensitivity as a great gift, which it has turned out to be. Anna is one of the most emotionally intelligent people I have ever known.

Many people get labeled “too sensitive.” Although that label is almost always hurtful, sensitive people do sometimes need to make changes. Perhaps in their hurt, they lash out with mean words. Perhaps they wail in despair, withdrawing into their bedroom for days. In other words, they are not too sensitive, but their skills in managing their sensitivity need improving.

It helps sensitive people to verbalize their feelings. However, they also need to be able to choose their words carefully, and not fling their emotions at others. Just because they are upset does not give them license to disrespect or hurt others in return. They need to be able to understand and “manage their impact” on the people around them.

We sensitive people have responsibilities. Often, we must learn to regulate ourselves. We can’t improve the world and employ our sensitivity as the great gift it is if we can’t manage our feelings. Happily, emotional regulation can be improved many ways, through increasing self-compassion, meditation, exercise, mindfulness, and hard work in therapy.

Being sensitive is a great gift, once harnessed. Sensitive people paint, write, and compose. Sensitive people heal, teach, and lead others. Sensitive people care for our pets and our children. When looking for the best nanny you can find, I bet you are looking for someone who will care deeply and sweetly for your infant. Those are the people who make our world better, all the “too sensitive” people. Thank goodness for every one of them.

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.