An episode of the “Changing the Conversation” podcast
Thomas Wexler and Kendall share strategies to support mental health during these difficult times 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.
Katie Volk, Host: [1:10] 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’re 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. Our guests all have lived experience with mental health challenges, and they’ll share what they’ve learned in their journey and what has helped them in these difficult times. My guests today are Thomas Wexler and Kendall.
Katie: [1:45] Thomas Wexler is a writer, musician, and spoken word poet who performs throughout Connecticut. Thomas has an undergraduate degree in American Studies from Yale University and a master’s degree in the same field from Bowling Green State University. He was drawn to psychology through his effort to better understand how people with lived experience of mental illness and addiction, including himself, fit into the cultural landscape. He is interested in finding clinical applications for the cultural representation of mental illness. Thomas, welcome.
Thomas Wexler, Guest: [2:16] Thank you. Thank you for having me.
Katie: [2:18] I’m wondering, what brought you to the Wisdom project?
Thomas: [2:21] I came to the Wisdom project at a significant time in my life, and I believe at a significant time for a lot of people who are facing similar issues, and that is I had progressed in my journey of lived experience to the point where I was really embracing and tasting recovery for the first time. And I was more excited than ever about how my personal experiences fit into a broader patchwork and collection with other people and with different social issues that were going on around me. And that’s when COVID-19 seemed to spring up and provide almost an opportunity for me to speak and relate and counsel and provide wisdom to different people who were going through similar things, even if they didn’t have quite the same background as me.
Thomas: [3:09] So, I suddenly felt my background was thrust into prominence in a way that was significant and transformational for both what it means to have lived experience and benefit from it and communicate that and what it means to undergo a pandemic or a difficult social situation like COVID-19. And when the Wisdom project came up at the Program for Recovery and Community Health at Yale University, I leapt at the chance to become a part of it.
Katie: [3:36] Wonderful. What a confluence of events. You know, one of the things I love about the Wisdom project is that it’s people with lived experience interviewing one another about that experience. And so to that end, we’re joined today also by Kendall, who first entered the mental health system at 16 and spent 20 years cycling in and out of hospitals before ever even hearing about the possibility of recovery. Encouraged and supported by faculty at NYU, Kendall earned her Master’s of Social Work in 2011 and then went on to earn a PhD from the same program just recently in January of 2020. Kendall has lived experience of psychosis and is currently a Postdoctoral Associate at the Program for Recovery and Community Health and is here to talk with Thomas about how his lived experience with mental health challenges has shaped his experience of the pandemic. Kendall, welcome. It’s so good to have you here.
Kendall, Guest: [4:29] Thank you for inviting us. It’s good to be here. And thank you, Thomas, for sitting down with me for this conversation. I was wondering if you would mind telling us a little bit about your lived experience with mental illness?
Thomas: [4:41] I’d be happy to. My experience is significant at this point, I first became involved in the mental health care system when I was a junior in college at Yale University. And I think it took me a long time to admit, but I had some confused ideas at the time, my life was kind of in shambles, you might say, and some people intervened on me and brought me sort of down to the point where I was hospitalized. I was put on medication, and I rebelled against that, it was a severe alteration of my life circumstances and expectations. And I didn’t want to really believe that anything was going wrong with me.
Thomas: [5:16] And I continued to progress in my education, I graduated from school, I went to graduate school, I’ve worked in different capacities, but I wasn’t really happy until actually almost two decades had gone by, and I started to accept that, yes, I did have this thing called bipolar disorder. It was impacting my life, I needed my medication, and I needed to take steps to address that. And this is where my lived experience, in the sense of experience and wisdom comes in. When I accepted that, I began to have a really changed, and like I said, transformational outlook on my life, on society, on culture, on issues, on involvement, on the community around me, and I began to relate to it in a much more, not simply healthy, but proactive and engaged way.
Thomas: [6:04] And that’s when I started to become interested and seek out these opportunities to speak on this issue and to engage as a healthcare provider myself, for people who had been going through similar situations and similar dramas and traumas and challenges in their lives. And I would say my lived experience has continued to progress to the point where I’ve embraced recovery now, I have high hopes for that. I know it’s not easy, but I see a little of it happening every day, day in and day out, each day you get a little further down the road. And I’m starting to believe things like recovery is possible, or I need my medication, or that mental illness, bipolar disorder, doesn’t isolate me from other people, it can actually help bring me closer together with them. That I have a platform, and I have a voice in our democracy, in our system, and I’m trying to extend that to other people. And I feel that the COVID-19 was a unique opportunity to bring those types of thoughts to bear in a way that hopefully other people could benefit from, not just myself.
Kendall: [7:04] Thank you. It sounds like you’ve been through quite a bit over the years and learned-
Thomas: [7:08] A little bit.
Kendall: [07:09 crosstalk…] and grown. You talked about how some of those experiences from earlier on are having an influence on maybe how you’re moving through COVID-19. Would you be willing to tell us a little bit about your lived experience, share some similarities with what it’s been like these past few months?
Thomas: [7:27] One of the most significant moments for me at the outset of my lived experience was when I was hospitalized for the first time, and it suddenly dawned on me that I was in the hospital, I was in a psychiatric unit, I was on meds, I couldn’t leave. This was changing my life, transforming my life, and my outcomes in life were going to be different because of this. And it was a radical or extreme situation, and I believe later on, when I would accept the reality of my illness and accept that there were and weren’t certain options. At that point, I accepted that something different, something extraordinary had happened to me, and I was facing an extraordinary situation that required an extraordinary effort and lifelong dedication to work my way through it and to not let it bring me down.
Thomas: [8:17] And that’s a very strong parallel, I feel, to COVID-19 because when something comes up, if it’s a so-called existential threat or it’s a natural disorder, if it’s a pandemic, whatever it is that shakes up and rattles to the core and plucks us out of our everyday life to the point where we’re facing a situation that’s radically different and challenging in key structural and procedural ways, there’s a moment that I’ve been through in my own lived experience, where those types of reality set in, and a certain response is elicited and required of me and of other people who go through these experiences.
Thomas: [8:58] And I can speak to the fact that acceptance is huge. When something, a tidal wave comes up on the horizon, you can panic, you can run, but ultimately you have to accept. And that point of acceptance, that something really dangerous, really frightening, but also something that we’re capable of handling is going on here, is something I’ve learned from my lived experience.
Kendall: [9:19] That’s a really interesting way of pulling the two together. And I think probably more common than for people who have had the experience of having to go through something extraordinary and accept something that other people may not have typically had to accept. Can you tell us a little bit, sort of extrapolating from that, what wisdom or what messages, what skills, what strategies might your experience prior to COVID offer that people who might be experiencing distress … You talked about acceptance and you talked about the extraordinary, and these are certainly extraordinary times, but how does one … Do you have thoughts that might help? How does one move towards acceptance? When one is overwhelmed, how does that process happen?
Thomas: [10:05] Yeah, I think people with mental illness or lived experience, sometimes we see things, and we see reality differently than other people do or differently than is supposedly sanctioned by society or the run-of-the-mill or the status quo. And that’s either part of the problem or it’s part of the solution. And I think going through COVID, so many stereotypes and accepted and relied upon forms of acting and behaving and relating were upset and destabilized, that the ability to see things differently and accept them for being different, while finding the strength and opportunity in situations that are different from what you’re used to and your everyday life, is something that really comes in handy, so to speak.
Thomas: [10:53] So if you’re faced with the reality that, extreme or not, it’s just different and you can’t apply the same rule to it that you apply to everything else, and you can accept that, and you can find the strength and the reserve and the creativity and the drive in that difference, that’s something that I think lived experience really verges on that territory. And it’s both the so-called problem with people with mental illness, and it’s also part of the solutions that arise that we engender.
Thomas: [11:21] Along those lines, putting other people’s needs ahead of yours, I don’t want to be like a clarion call or an alarmist here, but there’s something going on with the phrase ableism, which people might’ve heard. And it may not sound true, but people with mental illness, all the time, we’re putting other people’s needs, other people’s priorities ahead of our own. It goes counter to our instincts, it makes us feel smothered, it makes us feel wrapped up and pushed aside, but we have to do it for our survival precisely because we see things differently and not everyone’s always going to understand. And I believe this is a form of ableism that we get pushed into that corner so often, so to speak, but it’s very useful during times such as COVID-19, because we all have to put other people’s needs ahead of our own, and we have to work as part of a team and part of a group, in a collective, even if other people are seeing and processing things different than we are ourselves.
Thomas: [12:17] And then I want to speak a little bit about this concept of home that I’ve been thinking about a lot recently, because we’ve all been sort of reduced and restructured in our concept of what home is. Is it a place where we have to stay inside? Is it a place where we can only talk to certain people? Is it a place where we can’t contact other people? Is it a digital community now? Are we living on the web? Are we living on zoom? This concept of home and comfort, make home and comfort applicable wherever you can find them. And so many people with mental illness have transitory situations and difficult locations and difficult strategies in travel, even locally, but also globally and trans-nationally and throughout their communities and throughout their cities and their suburbs and their rural environments. And we need to build communities in interesting and non-traditional ways.
Thomas: [13:08] And I feel there’s the germ of something going on here with COVID that’s so interesting because we are building these interesting and non-traditional communities for the sake of survival and that’s something that people with mental illness have been doing for a very long time. And we form bonds that were not possible before these extraordinary situations.
Thomas: [13:28] And then the last thing I want to comment on, and I know this doesn’t apply to everybody, and certainly nobody is like this all the time, but fearlessness. People with mental illness are often fearless, and fear is a big part of our lives, and we’re required to take it on and confront it with courage just to get by. And I would say now is the time for all of us to not be rash, not be foolish, but to be fearless on a daily basis.
Kendall: [13:55] There’s so much you say that resonates with me, particularly about having to sort of navigate the world differently. Whether it’s because of the way we’re experiencing it or our confrontation with the world and the structures in it and how people with lived experience or other challenges are received by the world. Which raises a question for me around things like stigma and discrimination. In my experience, those of us with significant mental health challenges are often discounted or approached as though our experiences are too distant from people who don’t have those challenges. And I wonder though, if it isn’t precisely because we have to navigate the world a bit differently than many people, that we might have something to offer, especially now.
Kendall: [14:41] And if the impact of COVID might provide an opportunity to extend the recognition of our strengths, insights, and capacities, sort of beyond the current health crisis. You’re talking about, we’re forming new communities, which hopefully in some ways will carry over, and in another ways hopefully we’ll be able to get back together in person as well soon. But what have you noticed, or have you noticed anything that’s changed in terms of acceptance and stigma? Either in COVID-19 or around it or an opportunity for change for people with mental health challenges and lived experience?
Thomas: [15:11] I’m excited to speak to this issue because I believe that for a variety of reasons, there’s been a lot of momentum building to combat stigma. There’s been a lot of momentum building over the past I would say 10 or 15 years, in my personal experience, that is sort of coming to a head now. And the idea of mental illness, recovery, diagnosis, stigma, hospitalization, alternative outlooks, and notions of what all these concepts and what they mean politically, socially, motivationally, educationally in terms of family structures in older models of community and newer models of community, different platforms are arising because mental illness is now seen as part of a group of issues that are progressive in nature and together these issues are rising and creating a stir and making things happen and tearing down old ways and stereotypes and preconceptions.
Thomas: [16:09] And I think COVID has a lot to do with that because it’s changing our world. There could be other threats similar to COVID that come on the heels of COVID or right after COVID or somewhere down the road, this is a signal that something different is going on, something new is happening. We have to change, we have to evolve, and I feel that now is a time, and certainly during COVID, when extraordinary actions are required, and people tend to throw aside some of the stereotypes and preconceptions, but also because of the general climate that we’re living in today, which is a progressive ideology that I feel is very infectious, very nuanced, very necessary, mental illness and stigma, the ideas about and definitions and understandings of those two things are changing, I would say, much for the better. And I think we’re right on the verge of really combating these issues and confronting them in ways we haven’t done before.
Kendall: [17:07] Thank you, Thomas, for those thoughts, especially on stigma and discrimination. I have to admit that I’ve noticed changes in my own life as recovery has become more into the forefront than it was in the early days when I entered the system. So thank you very much, and I hope that some of your hopes for the future come true. Thank you.
Thomas: [17:27] Thank you, Kendall. I wish the same for you and for everybody out there listening.
Katie: [17:32] And I just want to jump in here because it’s been so heartening to listen to your conversation and thinking about what recovery really means and thinking about stigma. And one thing that struck me, Thomas, that you said in the beginning is that you’re just learning that recovery is possible. And I can’t think of a better way to end a podcast like this than to just take a minute to reflect on recovery and resilience and what that really means to each of us.
Thomas: [17:59] I know for me, my experience is that for many years I was unhappy. I have to live up to that, I have to own that, but I was really being quite resilient during those times because I was putting one foot ahead of the other, I was proceeding, I was getting work done. And I wasn’t happy for some reason, I still can’t quite put my finger on it, but when I began to accept and embrace the possibility of recovery and the work it takes to get there, I became engaged and [inaudible 00:18:29] in my life, in my community, and in different ways than I had previously thought possible.
Thomas: [18:35] And I would say resilience is a wonderful thing. And even when you’re suffering, supposedly suffering, you’re showing resilience, and it’s beautiful and it’s strong and it’s honorable. I think recovery is a change that people go through when suddenly possibilities open up. And it’s important to realize that those possibilities are there and that we make them ourselves too out of our resilience. And I think recovery is enabled by resilience and it’s a further stage of resilience.
Katie: [19:07] I totally agree. And Kendall, is there anything you wanted to add as you think about recovery and resilience?
Kendall: [19:12] I think sometimes in the mainstream, resilience gets misrepresented as something that has to be built rather than something that most people have. It can get beaten out of people through a lot of different things, but I think most people have resilience. And I think any person, not even a group of people, but any person who’s had the experience of being marginalized or discounted and gets up the next day is demonstrating levels of resilience that maybe people who don’t have those challenges, don’t always recognize. So I guess I’m in accord with Thomas on that. And recovery happens. I think it’s great when it’s supported and offered through outside of ourselves, but I think recovery happens, and it’s possible. How we define that, I think is an individual and personal thing. So I wish everyone out there, both recovery and continued resilience.
Katie: [20:04] I so agree Kendall, and I think so much of resilience is about where we shine the light and when you’re looking for it, you find it. And then we keep practicing it like a muscle, and it gets stronger and stronger. And for both of you and to our listeners, I wished you all, all the best.
Thomas: [20:23] Thank you, Katie. It’s been a pleasure and an honor.
Kendall: [20:26] Thank you for inviting us.
Katie: [20:27] And to our listeners, join us next time on Changing the Conversation.
Erika: [20:31] 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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