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

Check out our 2019 Fall Newsletter to read about our current initiatives here, and see blow for a preview:

A Conversation with Allie Cashel

By Val Walker

Allie Cashel is the author of Suffering the Silence: Chronic Lyme disease in an Age of Denial (North Atlantic Books) and is the co-founder and president of The Suffering the Silence Community, a nonprofit organization dedicated to breaking the stigma surrounding chronic illness and disability. Since starting work with STS, Allie has been invited to facilitate workshops and to speak about disability, inclusion, and storytelling at events around the country. She has appeared in a number of global media outlets, including Good Day NY (Fox5) and NowThis Live News, and has presented her work at a United States Congressional Forum.

Introduction

Communicating with doctors about a chronic illness takes practice, patience, and honesty. But in a rushed, crowded and hectic medical setting, we often skip information about our symptoms or get distracted and confused. Are we being fair reporters for ourselves about our symptoms and our own nuanced observations? It’s a fine, delicate art to accurately and fairly describe what is going on with our bodies, especially when we don’t understand it. And worse, if we have multiple chronic illnesses or a rare illness, we could feel overwhelmed trying to grasp what is happening to us. We can barely wrap our minds around the troubling problems our illness is causing in our daily lives, let alone do a good job of describing what the heck is going on to our doctor!

Many women like me manage several chronic illnesses at once, which overlap and complicate our symptoms and patterns. For example, I suffer from multiple autoimmune diseases, as well as other endocrine and cardiovascular diseases. Trying to analyze my symptoms can be as delicate as reading tea leaves, yet I must be as fair and concise as possible when I approach a doctor. My radar is on high alert for any sign that the doctor’s eyes are glazing over when I try to briefly outline the many overlapping symptoms—I even apologize for “having so many problems.” Indeed, my anxiety spikes long before I step into the doctor’s exam room. I can feel my blood pressure go up just thinking about how to describe my unrelenting symptoms to my doc (“Here we go again…”)

Allie Cashel has struggled with Lyme disease since her teens, and spent years feeling dismissed and misunderstood by doctors. She conducted a series of interviews with Chronic Lyme patients in New York and around the world, revealing a complex world of suffering within the Lyme community.

But in the past few years, she sees heartening signs that medical providers are tuning in more to the disease. With her helpful and informative website for living with chronic diseases alongside Lyme disease, she offers tips as well as reassurance for those of us who frequently see doctors while battling chronic illnesses that play havoc with our bodies.

1.     Do you think medical providers are “getting it” more about Lyme disease these days?

Allie: Fortunately, I’ve seen a difference in the past five years. There is more awareness and a more comprehensive view of Lyme disease. There is a broader understanding about the scope and intensity of the disease and how it affects our lives. I’ve witnessed how my fellow Lyme disease survivors are not undergoing as much dismissiveness and misunderstanding from doctors about what we suffer. I wrote about this sense of silencing in my first book about Lyme disease, Suffering the Silence. Thankfully, I see changes for the better.

 2.     What would you suggest for approaching a doctor about suffering a chronic illness, especially if it is a rare illness, or you’re dealing with subtle early symptoms?

Allie: I have lots of experience going to doctors with strange, subtle symptoms with Lyme disease. And I have heard from hundreds of patients coping with chronic illnesses with nagging, constant problems. Here is a list of what I think is crucial for sharing information with our providers:

• Write down your questions in advance—think ahead about what you want to find out and prioritize your questions.

• Track the symptoms and patterns of your illness, and if needed, keep a record of vital signs (could include blood pressure and pulse tracking, sleep and diet patterns, urinary and bowel patterns, pain patterns, stiffness and fatigue patterns). This might involve keeping a medical journal of the patterns of your symptoms.

• Research (Google) the treatments for the illness and learn about the illness.

• Know the landscape of what you need that is “out there” for treatment.

• Help to inform your doctor about the treatments you are interested in.

• Bring another person with you if you feel you might be overwhelmed or awkward with the communication.

3.     What if the treatment is not working or you are not sure what to say to your doctor for follow up?

Allie: First and foremost: It is important to be patient and wait at least a few weeks (even months) for treatments to take effect. Continue to track your symptoms. It might be useful to talk with your doctor about symptom relief, at least to help temporarily until more is known.

4.     Can you tell me a story about how your organization, the Suffering the Silence community, has helped someone communicate better with her doctor?

 Allie: Our Suffering the Silence community holds retreats for people to gather face-to-face to talk openly about their chronic illnesses. One of the benefits of our gatherings is that we can problem-solve about communicating with our medical providers and learn how to advocate for ourselves.  

One of our retreat participants was a woman suffering from endometriosis who felt her doctors had not responded well to her and did not listen well enough. By talking in greater depth and in detail about her problems at our retreat, she became more vocal and articulate about her condition. And best of all, she was able to learn what she needed to look for in a new doctor. Fortunately, some of the retreat participants were able to describe their positive interactions with their own doctors and offered concrete examples of what a healthy relationship with a doctor looks like.

 And here is the key: We need to ask ourselves, “What does a healthy relationship with a doctor look like?”

Our retreat participant with endometriosis was able to identify what she needed to look for when choosing her new doctor. Here is a check list of the basic questions she learned from our retreat:

•  Does the gender of the doctor matter to you? (Our retreat-goer identified that she preferred a female gynecologist.)

• Does your doctor allow you to feel comfortable enough to ask “stupid questions?” We need an open-minded doctor—for an open exchange of information. We often suppress our questions because we feel embarrassed that we don’t know enough. It’s vital that we don’t feel judged.

• Does your doctor take the time you need to fairly describe your situation—more than 15 minutes if you need more?

• Do you think it would be helpful to bring someone with you to help advocate, ask delicate questions, and retain the information? (For more complicated or difficult visits with our doctors, such as when getting test results or pathology reports, it’s normal that we need support when trying to absorb powerful, life-changing information.)

5. Your first book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial has helped thousands of Lyme survivors find their voice and learn to self-advocate about their disease. I’m excited to hear that you are a co-author with Dr. Bernard Raxlen, a Lyme disease expert, for a new book coming out this July, Lyme Disease: Medical Myopia and the Hidden Global Pandemic. Can you tell us more about this project?

Allie: This is one of the first projects of its kind, bringing physicians and experts together from around the world to address the epidemic of Lyme on a global scale. This book acknowledges just how many people and how much need there is to address this issue around the world.

 Book description: “Based on years of diagnosing and treating this growing problem in NY City, Dr. Raxlen, together with ‘expert patient’ Allie Cashel and a team of international contributors, provides a road map for individuals who suspect they have been infected and are lost in the ‘medical maze’ of Lyme and other tick-borne diseases, searching for a diagnosis and appropriate treatment.”

Read more on Allie Cashel’s website:  www.sufferingthesilence.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). 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.HearteningResources.com