C4 Innovations

Recovery and Resilience: Sharing Our Wisdom–Lived Experience & COVID-19 with Claire Bien and Eve Gardien

An episode of the “Changing the Conversation” podcast

Claire Bien and Eve Gardien discuss coping skills Claire has learning during her recovery that have helped during the COVID-19 pandemic with host Katie Volk. This episode is sponsored by the New England Mental Health Technology Transfer Center Network (MHTTC).

September 14, 2020

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Erika Simon, Producer: [00:01] Hello, and welcome to Changing the Conversation. Before we get started with our new episode, we want to acknowledge that as our communities respond to the COVID-19 outbreak, this is a difficult time for everyone, especially for people who are marginalized and those providing health and human services. We are deeply thankful to all the health and human service providers and community leaders who are working tirelessly to keep people safe and well and to help folks who are sick to recover. We appreciate you beyond measure.

Erika: [00:33] We are sharing some COVID-19 related resources for supporting people experiencing challenges with substance use, mental health, recovery, homelessness, and housing on our webpage at c4innovates.com/news, and on our social media channels on Twitter, Facebook, and LinkedIn. Please email us at info@c4innovates.com if we can support you or your programs in any way. All of us at C4 wish health and strength to you, your families and friends, and the people you work with. And now a trigger warning. This episode includes explicit discussion of mental health crisis, hearing voices, and suicide.

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Katie Volk, Host: [1:17] Hello, and welcome to Changing the Conversation. I’m your host, Katie Volk. Today’s podcast is sponsored by the New England Mental Health Technology Transfer Center. Today we are joined by two guests from a project called Sharing our Wisdom: Lived Experience and COVID-19, which focuses on mental health, social justice, equity, COVID-19, and a lot more. Wisdom Project guests have lived experience with mental health challenges and will share what they’ve learned along their journey and what has helped them in these difficult times.

Katie: [1:49] My guests today are Eve Gardien and Claire Bien. Both are joining me today from Connecticut. Eve is a sociologist and an Associate Professor at the Department of Sociology in the University of Rennes in France. She is also a visiting professor at Yale’s Department of Psychiatry. Welcome, Eve.

Eve Gardien, Guest: [2:07] Hello. I’m very pleased to be with you today.

Katie: [2:10] And Claire is a Research Associate at Yale’s Program for Recovery and Community Health. She is also a mental health advocate and educator and an author. Her memoir, Hearing Voices, Living Fully, was published in 2016. Claire facilitates two Hearing Voices Network support groups in New Haven, Connecticut, and is a member of the Board of Directors of the Hearing Voices Network USA. And welcome to Claire.

Claire Bien: [2:35] Thank you so much for having me, Katie.

Katie: [2:38] So to start our conversation, I’m wondering how did you, Claire, get involved with the Sharing our Wisdom Project?

Claire: [2:46] I am a research associate at the Yale Program for Recovery and Community Health, and Ana Florence, who organized this amazing project, is a colleague. And she announced at staff meeting several months ago that she and Dr. Larry Davidson, who founded the Program for Recovery and Community Health, were embarking on a lived experience or Shared Wisdom Project.

Claire: [3:13] And we began talking about the ways in which we have learned to manage our various challenges throughout our lives, may have given us a slight advantage over some people for whom the challenges of social distancing during COVID-19, during this pandemic spring, the ways in which they may have been less challenging for us because we learned to deal with feelings of unreality and isolation and that sort of thing, which most folks in the world have not experienced.

Katie: [3:52] One of the things that I am so interested in and think is so interesting about this project is that you all are interviewing one another. And so Eve is going to be interviewing Claire today as part of this ongoing conversation about sharing our wisdom. And so Eve, I’m curious how you came to the project yourself?

Eve: [4:13] Ana made the proposal to join to project during the staff meeting. And I thought this project was very inspiring, so I committed myself.

Katie: [4:21] Wonderful. And so I understand that you’ve got some questions for Claire today?

Eve: [4:28] Yes. Claire, I would like to say that I was very happy to meet you while I was [inaudible 00:04:35], and, you know, we talk a lot together and you told me you identified as a person with extreme experiences. What does that mean?

Claire: [4:43] So, my extreme experiences take the form of hearing voices. I do not see visions, but I also have other extreme experiences meaning that there are physical manifestations. When I went through my second extended departure from shared experience, and by extended, I mean, longer than a year, there were physical manifestations where I was physically jerked around by some entity that I did not understand. I also struggle a lot with paranoia, and I, there have been times in my life when I believe I tend to believe in telepathy as a result of my experiences. And I also came to believe in a higher power, that which we know or believe to be God. And I’m very, very sensitive to energy to other people.

Claire: [5:45] There were times in my life growing up where I thought that I had no personality of my own because I would find myself, especially in the presence of somebody, a stronger personality, acting and speaking, and really thinking just like them. And there are times now when I will meet someone, and especially if I am particularly open and wanting to connect with that person, if where the energies feels wrong, and I find that I’m constantly stumbling sometimes so much so that every other word out of my mouth is wrong. And I have learned, and initially that was very distressing, but I have learned over the years that if I throw up my guard, that I am able to within now a matter of seconds regain my sense of composure and slowly begin engaging with that person as the person that I am, who has had, you know, a modest professional career.

Eve: [6:49] Could you describe more some of your experiences?

Claire: [6:54] Yes, I think I should start by giving you a bit of my history. I am an immigrant. I, I came to the United States with my family when I was three and a half years old. And my parents and eldest sister had been refugees within China, as well as from China. My two sisters and parents fled from Shanghai to Hong Kong in May of 1949, just weeks before a Mao’s troops marched into the city. And my eldest sister tells me that she remembers seeing people being taken away to be shot. We managed to come to the United States through the Aid Refugee Chinese Intellectuals program, which was enacted during the Truman administration to present a brain drain from communist China to the Soviet Union.

Claire: [7:55] I grew up mostly in Ohio and Tennessee, and then went to college in South Carolina, where my father was teaching. And I started struggling with depression in my mid-teens and likely heightened by recreational substance use, marijuana and peyote, I began a bit of exploration into the mysteries of life in the universe in my, starting my early twenties. But I didn’t start hearing voices external to myself until I was 31 years old. And it’s at first, the first voices were mostly curious, and they were people. They seem to be people in my environment, and they were talking about me. They were mostly gossipy, and, and curious about who I was, but as I started listening to them more, they became more cruel. And eventually, and by the time—we moved from Princeton, New Jersey to New Haven in August of 1983, and by October of that year, I was so paranoid. I felt that I was being followed, had been followed from New Haven to visit my sister in Massachusetts, that, and I came back and thought that I was being spied upon because I was taking an editing test for a job, and a friendly little voice whispered in my ear and said, you missed something Claire, two paragraphs up in the middle of the paragraph.

Claire: [9:32] And I thought, Oh my God, I’m being spied upon. And of course I thought I had been followed from New Haven to Carlisle, Massachusetts the weekend before. So I started looking around the living room and couldn’t see any place where cameras could be hidden so that someone could see what I was doing. And I saw only the light bulb in the wall sconces. So I removed them all, put them in a paper bag and smashed them to smithereens. And then I waited for my husband to come home from work because he was in a new job, and I didn’t want to bother him. So when he came home, I told him we needed to call the police. And I forgot to say that the precipitating factor for my beginning to hear voices with the suicide of my first cousin whom I’d helped my mother bring to the US to, as a foreign student.

Claire: [10:30] And, you know, at her brother and sister-in-laws request, I didn’t feel I’ve been sufficiently attentive during her time here. She had moved from Princeton to New Brunswick to be with her friends. And within four months of moving there, she swallowed two bottles of pills she’d brought with her from China and committed suicide. So my guilt and shame over not having been a good older cousin and other, and also the fact that I wasn’t particularly settled in to a career even then caused me to question everything about myself. So, I thought the voices were right when they were saying that I would not, you know, who was I and who did I think I was. And then all of that.

Eve: [11:21] That must have been very difficult times, Claire. And how would you deal with them? How, for example, you told me you were a mental health advocate. How has your mental health advocacy helped during this pandemic? For example?

Claire: [11:38] Yeah. And really, how did it help me during, as I was seeking to find myself and establish a recovery. And it’s one of my most important coping skills is focusing outside of myself. Work is an enormously important coping skill because it forces me to focus my attention on what’s important and, and also volunteer work and especially things that I do well. I was a writer and editor and did public and community relations. And I was, you know, I’m good at that. And I’m good at thinking about things and through things and organizing myself, if I’m not allowing the voices to distract me or my fears. You know, I began doing the work of anti-racism in the mid two thousands and, and also have become involved with the Hearing Voices Network and also with the International Society for Psychological and Social Approaches to Psychosis.

Claire: [12:45] And I do a lot of work. I started giving presentations to facilitate, to Hearing Voices support groups, and really looking outside of myself is enormously important. The other major factor in my recovery was my now 33 year-old son, he’ll be 34 in August, who was three and a half when I went through my second extended departure from consensual reality. And when I almost jumped from the 15th floor balcony of a gap of an office building in downtown New Haven, I thought about how terrible I’d felt when my cousin committed suicide. And I knew that I could not allow my son to grow up knowing that his mother was a suicide. So I pulled myself away from that balcony and went to work. And for the next 20, 30 years, I did everything I could to be a good mother and a good employee.

Eve: [13:51] So your advocacy work, and as well being a good mother has helped you a lot because you can think outside of yourself and these simple things can help you also.

Claire: [14:05] Do simple things help? Yeah. Taking long walks, doing nothing, being quiet, being with friends are great, and things that are not so simple, but hugely important are writing because it allows me to reflect on what I think and feel and also allows me to share my experiences with other people. Being in nature, you know, during this pandemic spring being able to take long walks, and I live in a beautiful place which just very close to a lake. And I was able to watch seven pairs of nesting, great blue herons build their nests and birth and raise families. So that was really, really amazing. And probably not, again, not so simple, but I began more earnestly on meditation practice about three years ago and on part of a Buddhist lens, reading conversation, meditation group, and what I’ve learned from the people in my group…we read, and we can reflect, and we talk about the ways in which we try to apply what we read to our lives and share our wisdom with one another. So that’s been enormously, enormously helpful.

Eve: [15:26] I have a new question for you, Claire. How has COVID-19 pandemic affected your life? Were there any surprises?

Claire: [15:35] At first, my big surprise was that it was really easy because, as I said, I was able to take long walks, and the spring was amazing and, you know, walking around the lake and watching nature and flowers bloom, and the birds were singing, that was incredible. And so what I found hard is the sense of unreality that it was so surreal because I knew what was going on in the world. And I knew that people were dying, although not nobody close to me. And the people I actually know have a couple of have achieved almost miraculous recoveries. But it was really helpful to be able to go to PRCH staff meetings where some members of the staff spoke to really, you know, there’s still being in the fray, having family members who were in the throws of struggle.

Claire: [16:30] And I found that grounding because the work that I do, part of my, what is so important to my being able to stay focused is the work that I am able to do through PRCH, through my volunteer activities, through the nonprofit human services agency, that I, was my employer ’til I semi-retired last October. And then things started to change. And particularly if there were more and more incidents toward Asians, you know, incidents and assault and some crimes against Asians. And there began to be more and more articles in the newspapers about the history of racism against Asians in the United States. And I, you know, I’ve been doing the work for anti-racism since the mid two thousands. And I, you know, had always up to that time and really up until 2017, I said, I straddle both worlds. I’ve had virtually no impact, you know, based upon my ethnicity, the slant of my eyes. But that changed whenever China was much in the news in a negative way.

Claire: [17:40] And also when I had been on the West Coast, you know, wherever there are large numbers of Asians, there is more animosity, and I feel it, I see it, and I sense it. So that has been challenging, but you know, living on the East Coast, it was a non-issue ’til now. And as my fears began growing, and then especially after the, you know, the several murders, especially the most recent, you know, George Floyd, Breonna Taylor, and Ahmaud Arbery. And this conversation changed. I began to feel rather desperate. You know, part of me wanted to speak to, and did, to speak to racism against Asians. But by comparison against the ways in which Black people are treated in the United States and throughout most the Western world. And, also Eastern Asian are pretty, can be very racist. I was very angry because I am trying to speak with some white allies.

Claire: [18:46] Some, many of whom are friends. It’s like “oh Claire, you don’t, you know, we don’t believe you” basically. They didn’t say that, but they said it in their silences and knowing nods, and, you know, but, just because it pales by comparison doesn’t mean that I don’t feel it and doesn’t mean that it’s not real. And so my anger at having my reality denied when I’ve learned through becoming a mental health activist with the Hearing Voices Network that our experiences are real.

Eve: [19:11] Claire, what did you know during this pandemic?

Claire: [19:24] Well, I learned to use what I had used before, is to look outside of myself. And so when I started being angry and paranoid, I regrouped, and I shifted my focus again toward other people. And at first, I began looking at the strangers on the street with slight suspicion. I found that many people would smile at me, and it was a show of solidarity and support. And, and then I began looking for those signs of solidarity and empathy. And, and that has allowed me again to remember what is important and that what I feel is important and to engage in that self-care. But again, to look at other people and try to direct my focus towards helping those who are that much less fortunate than I am.

Eve: [20:20] Thank you so much Claire.

Katie: [20:22] Claire and Eve, I so appreciate being able to listen to this conversation. Claire, in your story, I hear so much about fear and shame and confusion and loss and trauma and racism, but I also hear confidence and finding an identity that’s meaningful and community and the power of relationships and spirituality and nature and how that brings about recovery and resilience during the most trying of times. And I really appreciate you taking the time to share some of your journey with us today.

Claire: [20:54] Thank you so much, Katie. I’m so pleased to have been able to have this conversation with Eve.

Eve: [21:00] Thank you so much Claire.

Katie: [21:03] And Eve, have a safe trip back to France.

Eve: [21:04] Thank you so much.

Katie: [21:06] And to our listeners, join us next time on Changing the Conversation.

Erika: [21:10] Visit c4innovates.com and follow us on Twitter, Facebook, and LinkedIn for more resources to grow your impact. Thank you for joining us. This episode is sponsored by New England Mental Health Technology Transfer Center, New England MHTTC, and was produced by Erika Simon and Christina Murphy. Our theme song was written and performed by Peter Hanlon. Our host for this series is Katie Volk. Join us next time on Changing the Conversation.

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