By Rebecca Fogg

It all started so early that I didn’t question it–my body yelling that something was terribly wrong with me or my life, even when it wasn’t. A chest cramp and wave of chills as a child, when I fibbed to a babysitter about my bedtime and got away with it. Spontaneous sobbing fits so immersive as a teenager that, driving myself to school, I had to pull off the road because I couldn’t see. Vigilance in romantic relationships as a young adult, analyzing every moment of tension for a partner’s potential indifference or disrespect (which would feel dangerous) as if scanning for cancer. Gut-knotting anxiety in business on the few occasions I met a no-win political situation but felt as though my whole future depended on mastering it.

I never spoke to my parents about my youthful somatic suffering, or to close friends later on. Why would you mention that you breathed air, or put one foot in front of the other to walk? If it was in my nature, then nobody could do anything about it. If it wasn’t, then it was my problem to solve. I could still experience the thrills of love, joy, learning, helping, and achieving, and frequently did. But they often felt snatched, like luxury items I’d smuggled past a dozing guard who’d awake at any moment and chase after me. Finally, in my early thirties, some especially observant friends nudged me toward therapy, and I learned to recognize and challenge distorted thoughts that caused me pain. Life improved significantly.

Then in 2006, my right (dominant) hand was partially amputated in a midnight explosion in my Brooklyn apartment, where I lived alone. Eight tendons, an artery, and the main nerve of the hand were severed, requiring extensive surgical repair at Bellevue Hospital in Manhattan. Afterward, doctors couldn’t tell me how useful my repaired hand would be, because so much could still go wrong in the healing process. Exhausted, disabled, in pain, and mentally muddled by pain medication, I couldn’t manage self-care, house care, and a mountain of accident-related paperwork myself; so my family stepped in for a few weeks, then an army of friends took over until the worst was behind me.

I was deeply grateful for, and cheered by, the love and assistance I received. But I also felt profoundly lonely, alienated from my self and life, and grief-stricken by unnamable loss. My trauma expressed itself in spontaneous sobbing fits, violent dreams, and intrusive thoughts about the September 11th terrorist attacks (which I’d also survived, as I worked just across the street from Ground Zero). Ultimately, physical recovery required three months out of work, several hundred hours of occupational therapy, and 45 hospital visits that year. I muscled through it by continuing with psychotherapy, speaking regularly to loved ones, and studying the science of trauma and healing, which intrigued and inspired me and gave me a sense of purpose and progress. By the one-year anniversary of the accident, I had returned to the exact same life I’d been living before it and thought I had moved beyond the trauma. I felt (and still feel) changed for the better–closer to loved ones, more empathetic and ambitious for social impact; and the experience brought two new passions into my life: writing and science. My therapist and I decided our work together was finished.

Over a decade later, I began writing a book about my injury and recovery, and the science behind it–from the brain’s fight-flight program (which enabled me to rescue myself) and the evolution of reconstructive surgery over thousands of years of war; to peripheral nerve regeneration and neuroplasticity, which made my extensively-repaired hand useful again. I titled the book Beautiful Trauma, to reflect the unexpected coexistence of the wonderful, and the terrible, in my experience.

Living alone in 2020-21, as I had been at the time of the accident, I wrote in isolation for hundreds of days while COVID locked down the planet, and the US burned with racial injustice and political corruption. Increasingly, waves of irritation, grief, and despair left me gasping for relief, and I considered this span of time a fresh trauma, symptoms of which would surely abate when the pandemic did. But when they continued to flare occasionally even a year after the last COVID restrictions were lifted, it finally occurred to me that I might still have accident-related trauma to process. So after some time seeking the right practitioner, I recently began a course of EMDR (Eye Movement Desensitization and Reprocessing) therapy, which I’d learned about through my book research.

The effects so far have been remarkable. The process has surfaced questions I’ve never contemplated before; and these, in turn, have prompted insights about how old family crises, my accident experience, and my depression/anxiety might be connected–insights that I don’t believe I could have arrived at through any other means. Processing these in the safety of the sessions, I’ve tapped wells of anguish I didn’t know I harbored. Outside the sessions I feel an old vigilance relaxing, surrendering intellectual and emotional bandwidth that I hope I can redirect toward accepting what I can’t change, and pursuing what will enrich my life and that of others. I know that EMDR won’t eradicate stress and sorrow from my life. But based on my experience of it so far, I believe it will help me live with more ease and optimism, as talk therapy did before it.

I find it astonishing that I didn’t consider pursuing trauma-focused therapy until I’d lived almost 20 years post-accident and written a whole book on trauma. But then, trauma weaves itself into one’s full-body experience in subtle ways that can be difficult to recognize, or may only be visible over time as patterns of suffering emerge. I also needed to sit with my new research knowledge for a while before understanding that I could be suffering the effects of trauma despite not meeting the precise clinical criteria for PTSD and that EMDR wasn’t just for soldiers.

And, I suspect that the way we talk about psychological resilience as a society also plays a role. It’s often characterized as a linear, time-bound process; and admired, almost as if it were the product of good character, rather than of innumerable, interacting bio-psycho-social factors, many beyond our knowledge or control. As such, you work hard at recovery, you progressively improve, you finally “get over” the trauma–and you’re a hero! Who wouldn’t want to live that story arc? I needed to believe it in the months following the accident, while I exhausted myself every day, physically and psychologically, grappling with the challenges of my upsetting “new normal.” But months later, as I regained health and hand function, and thrived otherwise as well, the powerful narrative may have distracted me from psychological healing yet to do.

What is resilience, then, if not getting “over” or “past” life’s most painful experiences? I see it as a life-long process of learning to live with energy and optimism, despite intimate knowledge of our fragility and mortality. It can be grueling work, requiring substantial social and professional support to which I’d wish everyone adequate access. But it offers freedom from the depleting pain of resisting the human condition and the lost opportunity that results from not seeing the facts of our lives as they are. And there can be beauty in it–like the compassion of helpers, the wisdom we gain through coping that we pass on to others, the doors opened to new experiences and relationships to be cherished. Resilience is being alive.

In 2008, Rebecca Fogg walked away from her New York life and successful career in financial services to move to London, where she co-founded the Institute of Pre-Hospital Care at London’s Air Ambulance and continues to work, write, and learn Scottish fiddle. A graduate of Yale University and The Harvard Business School, she spent five years (2014-2019) researching and writing about healthcare with renowned Harvard Professor Clayton Christensen, author of The Theory of Disruptive Innovation. BEAUTIFUL TRAUMA: An Explosion, an Obsession, and a New Leases on Life (Avery, Penguin Random House), is Fogg’s first book. It was awarded the 1029 Royal Society of Literature Giles St. Aubyn Judge’s Special Commendation for work in progress.

An Interview with Paul Kandarian, Actor, Writer, Activist:

By Val Walker

Introduction

This year the Health Story Collaborative, in partnership with COAAST (Creating Outreach About Addiction Support Together), launched performances of an autobiographical play written by Paul Kandarian and his son, Paul, called Resurfacing. Their story takes a close look at how addiction tears apart family relationships as well as how our wider community can play a vital role in bringing a family back together in the fragile, early stages of recovery.

Last April, I sat in the audience of this play alongside an audience of over 100 people who broke into a standing ovation as we wiped away our tears of relief and hope. I felt the power of a live theatrical performance telling a true story with a very hard-won and inspiring ending.  

Resurfacing tells the story of Paul as a father who was once painfully disconnected and powerless over his son’s opioid addiction. And worse, he believed he was responsible for his son’s pain. “I felt like a shitty parent that my kid had turned out this way.” The shame Paul suffered, alongside his son’s shame of being addicted, became a vicious isolating force that polarized one from another. But despite the limitations of his family to heal from this isolating force, and the alienation of returning from Afghanistan as a veteran, his son turns to supportive people in his community to help him build his recovery support network. The healing force of the wider community is also what Paul needs as a father to break through his isolation and shame. 

In short, Resurfacing shows us how our community can hold families together through isolating times when they have no one to count on. We need our communities to grapple with addiction and the long, lonely path of recovery.

About Paul

Paul E. Kandarian is an actor and a writer living in the Boston-Providence area. He has written countless articles for a variety of publications, including the Boston Globe, Yankee magazine, Rhode Island Monthly, Boston Parent, Seattle’s Child and many others. Since 2007 he has dedicated his creative talents towards acting by appearing in independent films, TV commercials, educational videos and more.

But with all the acting he does, the most important work he does is performing with the nonprofit, COAAST, Creating Outreach about Addiction Support Together. A Rhode Island-based nonprofit devoted to eradicating the opioid epidemic through arts-based therapeutic and community-driven approaches, COAAST was founded by Ana Bess Moyer Bell. Working closely with Ana Bess, Paul performs in the COAAST production of Four Legs to Stand On in addition to Resurfacing in his mission as an activist in helping communities heal from addiction.

Theater as a Gathering Force to Build Community

Paul Kandarian with Ryan Durkay in Resurfacing (Photo: Boston College The Heights)

Paul was the perfect person to explore the role theater plays in strengthening our communities to grapple with addiction. I couldn’t wait to ask Paul about his experiences performing for diverse audiences since Resurfacing was launched earlier this year.

Val: Paul, how does repeatedly performing in a play about your own painful ordeal make you feel? It must be exhausting, to say the least, if not difficult.

Paul. Sure--It does feel nerve-wracking at times, and it does hit close to home. Yes, it’s raw, and you “put yourself out there,” and you do “go there” time and time again. But seriously, it’s necessary. That’s why I do this. This story needs to be told and it comes straight from the heart, which I think is the best way to get it out there. My words and my son’s words speak for thousands of fathers and sons going through addiction and recovery. I am honored to be performing, and I will say again why I am performing as an activist: “We hurt as a community, so we must heal as a community.”

Val: How does theater make us all feel part of our community?

Paul: Theater works on many levels to make us feel a part of our community. First of all, theater validates that we already are a community. When we all get together in a big room to watch a true story being told, we are assured that community is truly around us—we just don’t see it until we are all in that room together. Theater shows us what has been there behind the scenes, that our community is in action, long before it has turned into a news event or a script or a play. Just think about it: When you go to a play about something you care about, you are surrounded by a bunch of people you don’t know (strangers) and yet we’ve all come together to be moved by the same things (addiction, loneliness, isolation, families in chaos) and we all have a common experience at the same time—now, that’s community.

We forget we are part of a community because most of the time we are running around in our individualized little bubbles. It’s like the saying, “A fish doesn’t know it’s wet.” We hardly remember we are all in this big shitstorm together as human communities.

Val. I never thought of community in that way--that we just forget that we already are a community until we are all in that room together having the same experience. Grappling with addiction, recovery and isolation does require this powerful sense of community that supports us. And furthermore, how does theater create community?

Paul: Theater has an immersive force. It pulls us in. That immersion is healing because we are somehow given the permission to tap what is uncomfortable inside us. Theater allows us to “go there” to what’s eating at us, what’s downright painful. When we identify with a character, we sort of hitch a ride with that person to go through their journey and come out with something they have learned. Essentially theater works on the assumption that if you can feel it, you can heal it. Best of all, theater can take us to the stigmatized, or shameful parts of ourselves. The parts we hide from others as well as ourselves. We might even feel acceptance and compassion for those hidden parts.

 Paul E. Kandarian, (far left) son Paul S. Kandarian, (second from left) Anna Bess Moyer Bell (holding mic), Founder, and other COAAST performers. (Photo courtesy of COAAST)

Val. Yes, the stigmatized and shameful place that the opioid epidemic touches in all of us…

Paul. To make a point about stigma, I often try a live experiment with our audiences who come to see Resurfacing. Here is what I do: I ask the people in the audience to raise their hands if they know someone who has cancer, and most people will raise their hands. But when I ask people to raise their hands if they know someone with an addiction, far fewer hands will go up. The audience “gets it” when we do this experiment. We hide so much. Still, theater has a way of reaching the parts we hide, and this helps remove the stigma.

And I have one more thing to say about why theater is so healing. It is revelatory. It shows us we are more similar than we are different. It reveals we are mostly alike deep inside. I find that very hopeful.  Theater helps us feel that this world does not have to be so impersonal and dehumanizing. We are, indeed, much more alike than our world seems to tell us. Social media, for example, can tell us how special or different or unique or better or worse we are from one another. I believe theater does the opposite. We show up and we feel the same feeling at the same time in the same place. Theater gathers us together and breaks us out of isolation and loneliness.

Paul Kandarian’s son, Paul S. Kandarian

Val. Paul, of all the shows you have performed with Resurfacing, which one has been the most memorable for you?

Paul: Earlier this fall, we performed at the Providence VA Medical Center. It was a packed house, a great turnout. It felt so good to perform for so many veterans. My son, a veteran of the war in Afghanistan, was in that audience. Sitting in that audience was also the clinician that he first reached out to and trusted, Lynne Deion.  Lynne never gave up on him and has been there throughout his recovery. It was brilliant to have them all there. It was cathartic, to say the least. I am so proud of my son. He has now completed his degree in psychology and is working as a rehabilitation counselor with others in recovery.

I’m looking forward to more performances of Resurfacing in 2020. In partnership with the Health Story Collaborative, COAAST will be expanding Resurfacing to more venues, especially for veterans in Rhode Island and Massachusetts. Stay tuned.

What a long, long journey it has been for all of us. It’s hard work, but being an activist as an actor is the most rewarding thing I’ve ever done in my life. I never thought helping others could feel this good.

Val. Thanks for all you do, Paul. Congratulations for launching Resurfacing this year. It’s been wonderful to talk with you.

Paul. I’ve enjoyed it. Thanks very much.

TO READ MORE ABOUT RESURFACING AND COAAST PRODUCTIONS, EVENTS, AND PROJECTS:

COAAST (Creating Outreach About Addiction Support Together) www.COAAST.org

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010) which won the Nautilus Book Award. Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March, 2020, with Central Recovery Press. Learn more at www.valwalkerauthor.com

I’m sure you’ve heard the saying, “It’s not how many times you fall that matters; it’s how many times you get back up.”

It’s a great message, but to me, at least in my circumstances, it doesn’t tell the whole story. Don’t get me wrong, getting up from a fall, whether physical or emotional, is incredibly important. Learning to pick yourself back up is a valuable skill, and is representative of a special type of grit and determination that’s needed to get through the realities of life. But there’s more to it.

As someone who is well-versed in falling after nine years living with Miyoshi Myopathy, an adult-onset form of muscular dystrophy, I’ve become an expert on the subject, for better or worse. I’ve fallen all sorts of ways – I’ve tripped on cobblestone sidewalks, I’ve stumbled getting off a bus, and I’ve been knocked over by oblivious strangers engrossed in their iPhones. I’ve even fallen over after sneezing. Even with the greatest of precautions, it doesn’t take much to fall, especially now that I’m nine years into this disease, a physical shell of my former self.

As a serial faller, it often feels like the famous saying has been turned around on me: It’s not how many times you pick yourself back up, it’s how many more times you’re going to fall now that you are upright again.

Falling, as you can imagine, is no fun. It’s not something I’ll ever quite get used to. But thankfully, so far, I’ve gotten back up every time, although in the last few years I’ve needed the help of others to do so. Assistance or not, there is pride in getting up after a fall, dusting myself off, and continuing on with life.

However, it isn’t from the act of getting back up where I’ve learned life’s most important lessons; it’s on the ground post-fall. It is here –on the cold, miserable pavement, or the hard wooden floor, or the cushiony carpeting (oh look, the Cheerio from yesterday’s breakfast), where I’ve had to confront the sobering realities of my life, mainly, that my disease isn’t going to get better anytime soon, if ever. Lying on the ground, unsure how I’m going to get back up, is terrifying. Every time it happens, my body trembles, my heart races uncontrollably. I often feel like I could pass out, that is, if I don’t throw up first.

But it is in these most frustrating moments after a fall where I have found the resolve to keep going, unlocking strength I never knew I had. I found this resolve - to continue living my life despite the weighty knowledge of what lies ahead – ironically enough, after trying to give up.

It was middle of winter in early 2013, and I was going on five years dealing with increasing muscle weakness that I knew was only going to get worse with time. That night, on a side street in Cambridge, Massachusetts, I fell for the umpteenth time, but it was the first time I couldn’t pick myself back up using my own strength. Instead, I had to crawl over to a parked car and use it as leverage to stand up again. When I finished, exhausted, I plopped myself onto the hood. I wanted to quit life right then and there.

Over the years, I had suppressed my emotions, putting on a strong façade to keep myself sane day after day. But on this night, it was all just too much. I had fallen twice in five minutes, and if the car wasn’t there to bail me out, I might have taken myself up on the alternate option to crawl under a nearby bush and wait for life to pass me by.

In those dark moments on the ground, when I failed over and over again to get up – first with my body weight, then with a flimsy metal fence that never had a chance to support me - I thought this was going to become my life, my future. Fall. Get up somehow. Fall again. My life reduced to perverse clockwork.

On the hood of the car, I felt an exhaustion I had never felt before, and have never since. It was a combination of physical exhaustion and emotional burnout. I had used all my strength to get up onto the hood, after crawling 20 feet to even get to the car, after failing twice to get up, after having fallen again five minutes before that and pulling myself up using a stronger fence further down the street. Giving up was not only an emotional decision, it felt perfectly rational. How could I deal with this every day? And it’s supposed to get worse from here?

Deep down though, I couldn’t give up. Maybe it was my subconscious giving me a jolt, telling me to snap out of it, or maybe it was a divine nudge reminding me I had so much yet to live for – I believe it was both. Eventually, I pried myself from the hood of the car and walked, ever so carefully, the remaining block to my apartment.

It was only months later that I could fully understand how that experience was a turning point in my life. The falls haven’t gotten any easier since then, but in finding my inner strength that night – and I had to really be pushed to brink to find it – I gained a new confidence. I realized that if I could withstand the pavement, the failed attempts to get up, the dark thoughts that swirled through my mind, even the knowledge that falls like this would become a regular occurrence, I could withstand anything. Suddenly, dreams that were dashed no longer seemed impossible.

Doors that had closed in my face opened once again. No problem seemed insurmountable. This audio clip, recorded on the phone and edited by Dr. Annie Brewster, chronicles my nine-year journey, back to 2008, when I was first diagnosed and started feeling symptoms, on through the present day. My life these last nine years feels like a three-act play – Act 1: Denial, Act II: Depression, Act III: Acceptance.

I am in a better place today, although I still fall, and still occasionally wonder if there is a limit to how much frustration I can take. But it is from these moments on the ground, when I am forced to confront the magnitude of my disease, watching helplessly as the mobility of my former life slips further out of reach, that I have learned to let go. To let go of the feeling of permanence that each fall brings. To let go of the notion that this is all my life has been reduced to. To let go of what I can’t control. Falling is merely one activity – albeit a miserable one – in a life that is so much more than my muscle weakness. Falling can be physical or emotional, but it happens to all of us, repeatedly, even with the most careful planning. I hope that my story – and my lessons learned from the pavement - can be one of many stories that you can refer to when life knocks you down.

Because, as I learned the hard way, and as the great saying should have gone, it’s not how many times you fall that matters. It’s not even how many times you get back up. What matters is knowing that you are going to fall again, and when you do, that the sidewalk is powerless to stop you. You are more resilient than you know.

In August of 2012, Charlie Atkinson was bitten by a mosquito in the garden outside his home in Cambridge, Mass.

From that bite, against the odds, he contracted West Nile Virus. It nearly killed him.

Charlie was in a coma for more than a week, paralyzed in his left arm and right leg. He spent more than 400 days total in two hospitals. He is still recovering.

Before the fateful insect bite, Charlie, married, with four children and nine grandchildren, was incredibly active. He was an avid tennis player, a self-taught pianist, an educator and entrepreneur who started numerous companies. West Nile Virus changed that life.I met Charlie, now 78, on a snowy December day at his home, now retrofitted with a wheelchair ramp and a stair lift. We spoke in the sunny dining room, which has been transformed into a bedroom, complete with a hospital bed and Charlie’s ventilator equipment (he has a tracheostomy and is on the ventilator at night). Charlie lay propped up on his pillows as we spoke, and his warm handshake and bright eyes made me feel right at home.

A self-described “Just Do It” guy, Charlie fought his way back from near death with amazing determination. He surpassed the predictions of the medical community and has continued to make progress: he can now get around with a roller walker and even take steps on his own with a cane.

But beyond his physical comeback, Charlie’s story is also about learning to be a smarter patient; questioning the conventional medical wisdom and seeking out health care providers who are truly compassionate.

West Nile Virus is an arthropod-borne virus (an arbovirus), most often spread by mosquitoes between the months of June and September. It has been found in 48 states (all but Hawaii and Alaska) and in the District of Columbia. It was first detected in North America in 1999 and has continued to spread since that time. In 2013, the CDC reported 2,374 cases and 114 deaths.

With an incubation period of 2-14 days, only one in five people infected will develop symptoms, most commonly fever, body aches, joint aches and other relatively minor ailments. Less that 1% of infected individuals develop serious and at times fatal neurologic illness, including encephalitis and poliomyelitis, like Charlie. While the odds of serious illness are low, the consequences can be devastating. Without any viable treatment options or a vaccine, prevention is essential.

West Nile isn’t something we typically worry about, but after hearing Charlie’s saga, I know I will be more conscientious about covering up, applying mosquito repellent and staying indoors during peak mosquito hours during the summer months.

More importantly, Charlie’s story has taught me a lot about the power of a positive attitude in healing. In coming to terms with his lasting physical deficits, he also acknowledges that there are some things he now does better than he did before his illness. For instance, in learning to use his hands again, he feels his piano playing has improved. In his words, “I now hit the notes more accurately than before I got sick.”

Charlie would like to express his tremendous gratitude to the medical institutions where he received his care, Massachusetts General Hospital and Spaulding Hospital for Continuing Medical Care in Cambridge. In his words, “They saved my life and made it worth living.”

Originally published on WBUR Commonhealth Blog, January 17, 2014

Resources:

http://www.cdc.gov/westnile/index.html

1-888-246-2675 is the Centers for Disease Control and Prevention information helpline for the West Nile Virus and is open 24 hours a day. It is also available for Spanish speakers (1-888-246-2857) as well as those who are hearing-impaired (1-866-874-2646).