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In this podcast, author Mark Lukach shares his experiences as the loved one of someone with new onset symptoms of mania, depression, suicidality, and psychosis.
PSYCHED! A PSYCHIATRY PODCAST
with David Carreon, MD and Jessica A. Gold, MD, MS
In this episode, we talk to Mark Lukach, author of the book My Lovely Wife in the Psych Ward: A Memoir, about his experiences as the loved one of someone with new onset symptoms of mania, depression, suicidality, and psychosis. Mark tells us the story of his wife Giulia and how their future changed unexpectedly when they were 27 years old and she was first hospitalized on a psych ward.
He describes why he wrote his article and then his book (no other books on caregiving in a romantic relationship! and feelings of loneliness), the response from others (including parents at his school!), and the role of writing in his marriage. He also shares it has been like in his relationship as a caregiver.
Mark details how he redefined what love is and the role of love in illness and pain, as well as learning to plan for a crisis in between crises. He also beautifully explains what’s it’s been like to be the caregiver and have his feelings and experience unacknowledged by so many-from her professionals to the mental health insurance system. He imagines what an ideal mental health system for caregivers might then look like-including redesigning the waiting room-and how maybe it could all be fixed with one word: inclusivity. Mark's website is here.
Welcome to Psyched. A podcast about psychiatry that covers everything from the foundational to the cutting edge, from the popular to the weird. Thanks for tuning in.
David Carreon: Hi this is David Carreon.
Jessi Gold: This is Jessi Gold.
David Carreon: And this is Psyched. Today we have Mark Lukach, a teacher and freelance writer. His work has been published in the New York Times,The Atlantic, Pacific Standard, Wired, and other publications. He's currently the 9th grade Dean at the Athenian school where he also teaches history. He lives with his wife, Giulia, and their sons in the San Francisco Bay area. Mark first wrote about Giulia in a New York Times Modern Love column, and again in a piece for Pacific Standard Magazine, which was the magazine's most read article in 2015.
David Carreon: Mark, thank you for joining us.
Mark Lukach: Sure thing, thanks so much for having me on. I really appreciate it.
David Carreon: Mark, tell us about this piece that you wrote about. What's the story behind it?
Mark Lukach: I actually don't initially identify as a writer. I really am a high school teacher, right? I met my wife Giulia when we were actually in our first week of college. It was very much puppy dog love at first sight, like chasing rainbows into the sunset kind of thing, you know? It just felt like a fairytale in many ways. We ended up getting married, pretty much directly out of college, and moved to California soon after that. I thought the future was set. I had this amazing woman who I was in love with, who I was married to, we were gonna have a family. I was doing my dream career of teaching high school history.
Then when we were 27, Giulia ended up having a psychotic episode. This was totally out of no where for us. It's onset was really disorienting and pretty terrifying, because we had no sense of what mental illness looked like. Giulia was definitely always really ambitious and had some perfectionist tendencies and could be hard on herself, but in no way would that, to me indicate ... I didn't expect or have any reason to expect that she was gonna end up having delusions and be fully paranoid and have to get hospitalized.
How it all went down was that, she ended up starting a new job and for whatever reason the combination of the work stress and the self imposed expectations, she kind of got paralyzed with anxiety at work and had a hard time doing even fairly menial tasks. Day to day emails, she would overthink everything, she'd forward them to me to proofread these two sentence emails and say, "I've been working on this for two hours, because I want to make sure it was just right." That was nothing like the Giulia that I had known before who was always so effective and efficient at work.
It started looking like that, and then it grew where she ended up experiencing ... she was having a hard time falling asleep. She lost her appetite, and then eventually she ended up not sleeping at all. I'm like, "What's going on. What's happening to you?" I actually had a friend who was getting a PhD in Psychiatry, and I checked in with him and he's like, "You know what, she's probably just adjusting to this new world, this new job." It was her most important job that she'd had.
So, we were kind of like, it's just situational, she's hopefully gonna settle in and adjust. I thought that was really good advice, but I had a hard time accepting that Giulia couldn't just figure it out. I was like, "Giulia, you're tired. You've been working hard, just go to sleep. I don't get it. Why can't you fall asleep if you're tired. And if you feel so upset, why can't you just relax and take it easy." I was really naive and unfortunately pretty unhelpful in that way too. I just thought, well when you're having a tough time, you take care of yourself, you get a good nights sleep, you step away from the stress, and then everything's gonna be okay.
It wasn't for her. She got rapidly worse. In the stop sleeping phase she ended up experiencing delusions. That's when I ended up taking her to the emergency room where they admitted her and said she was psychotic. I literally didn't even know what that word meant. I thought they meant she was like a psycho killer, or something, and so that she was dangerous. I didn't think she was actually dangerous to anybody, I just thought, this woman's really tired and really stressed out and needs to just rest.
My expectations of what was going to happen in the hospital were also very unrealistic. I thought that they would just give her the right pill or two and 48 hours later she'd be home and she'd be back at work within a few days. Just kinda back to herself. Instead, they experimented with a lot of different medications, she ended up being in the hospital for 23 days. I took that time off work. I actually took the semester off of teaching so that I could be there to support her through this.
She came home and was admitted to an outpatient program where at admission they said, "Our average time in here is like 4 to 6 weeks." And Giulia ended up being in that program for 9 months, just because they continued to struggle to find the right medication that could support her. I was thrust into the world of caregiving.
Your question was about writing. This is a really long answer to get to that because, when Giulia was hospitalized ... I'm a historian right? So I go and I research to find answers. I learned a lot about mental illness by reading books, researching the internet, et cetera.
I was really shocked to find that there was almost nothing out there about caregiving around mental illness, especially in the context of a romantic relationship. I did find some stuff about parents trying to support their children, which I think is really useful and mostly relevant, but I also think there's a really big different between a relationship between a parent and a child and a relationship between two partners who are trying to be equals. And who share a bank account and stuff like that.
I felt, of the many feelings that I had throughout this, just abject sadness and fear. All of it was compounded by the sense of loneliness. Even though I wasn't the only person in the world going through this, I sure felt like it, because I couldn't find anybody out there who was talking about it. I won't say that was my initial motivation to write about Giulia's mental health and my caregiving of it, but when she ended up getting out of that outpatient program, we had the idea that maybe our story could help people. That Giulia, if she was willing to share her experience, and if I was willing to share my experience as a caregiver, we could connect with people who also felt that sense of loneliness.
The first piece that I wrote was for the New York Times Modern Love column. It got published and it got a lot of attention, there's no question about it. I ended up getting a lot of emails because I think it struck a nerve with people who are like, I'm in a really similar situation, and I haven't found people who are writing about this.
Then, a few years later, I ended up working on a magazine piece that detailed not only Giulia's first episode, but also her second episode and how it was connected to the fact that we had become parents in the middle of it. That was called "My Lovely Wife in the Psych Ward." It was in Pacific Standard Magazine. I hate using this phrase, but for lack of a better term, that piece went viral. It had a few million reads within the first week of it. For a few weeks I was getting over 100 emails a day, and almost every single one of them said thank you for writing this, now here's my story. It was amazing to see how many other people felt that loneliness that I have felt.
That magazine article lead to me having the opportunity to turn it into a full book. The book's been out for about a year now. It's actually coming out in paperback in early May. It's had, what has been for me, a pretty similar effect, where it's just presented me with these amazing opportunities for me to speak to people who are also in a family dynamic that's impacted by mental illness. Whether it's someone who they themselves have been diagnosed, and I've gotten feed back that it's just given them a little bit of a sense of perspective on what their family members might go through. Or, the caregivers.
I'm so humbled that people have taken the time to read this, because the fact that its making people feel a little less alone is just such an amazing sense of like, yes, that's exactly what I wanted to do this for. Because, the tragedy of mental illness is that we are people who are scared to talk about it. Even though we are suffering and struggling, we add that extra layer of difficulty, because we think it's something that's too scary to share with your friends or share with others. As a result, you lose perspective on how many people are going through this. And how, if you actually do open up and talk about it, you can support each other, you can swap resources, you can share strategies, et cetera, et cetera.
Where we are today in 2018, Giulia has been hospitalized a total of 3 times. That first one was back in 2009, her second one was in 2012, and then the third was in 2014. They've all happened in the fall. They've all followed a very similar trajectory of starting with psychosis and then being followed by a very lengthy suicidal depression. Her official diagnosis is Bipolar 1. To support that, she's on Lithium, which has turned out to be really great for her. It feels like it helps to manage the illness without creating unwanted side effects.
We're cautiously optimistic that we have found a way to manage this in our lives. And to still get to be the type of individuals and family that we had always dreamed about. Giulia is back to thriving in her career, and that hasn't been an issue. I'm still a high school teacher. Our first born is almost 6 years old. And seven weeks ago, Giulia gave birth to our second child.
Jessi Gold: Congratulations.
Mark Lukach: Things are going really wonderful there. He's an awesome little guy, and Giulia loves being a mom. I never want to think, "Oh, this is behind us." Because, I know that Bipolar is a lifelong condition. There's always reason to have to be cautious. I do feel really hopeful that through these really difficult years we've learned how to care for ourselves and each other, so that her Bipolar does not have to be something that ruins our family. We fell like regardless of how many future hospitalizations there may be, we think that we can make it as a family. Again, you literally asked one question and I just took off and ran with it. I hope that's okay. That's the context of our family's story and the writing I've done about it.
David Carreon: Mark, thank you so much for telling us that story. It's such a powerful story, and one of the things that just strikes me about how you tell it, is you started the story with the puppy dog rainbows into the sunset love and that's apparent and palpable in the way you tell the story, that you are in love with your wife.
Mark Lukach: Yeah. I am. I don't know what else to say other than yes, I agree with you.
David Carreon: I love that. It's often hard for people, as we see people who have mental illnesses, it's often hard for them to ... for people outside of the field to realize that there are real lives and real stories, and people can get back to thriving. That doesn't always happen, but that happens.
Mark Lukach: Yeah, exactly.
David Carreon: It's such a good balance between yeah things are hard, but that doesn't change the fact that she's a person who you're in love with, who can be back to thriving despite some very serious challenges.
Mark Lukach: Yeah. Through her diagnosis I had to redefine what love is, and what caring for someone you love looks like because my original thought was when someone you love is in pain, you wrap them up in a bear hug and you become their cocoon against the harshness that is hurting them. I also thought that it meant problem solving. I thought, hey you're sad, so I'm gonna help you feel better. Hey you're feeling suicidal at this moment, I'm gonna change the topic so that you don't have to think about that and you can think about something else.
I had to learn in response to both of those views is, for the first one I really had to learn the limitations of myself. I saw a therapist though out this and she used to always say, the good news and the bad news is that you're just not that powerful. I had this expectation that as her husband I was going to fix her, which is ridiculous, but I still felt it. I had to let that go and trust the process a little bit more, still be fully informed and researched and in communication with the doctors as much as I could, but also understand that the human brain is way more complicated than something that just a bear hug can fix.
I think the other thing that I really had to learn was that when people are in pain they're not necessarily looking for a problem solver. If I'm having a crappy day, and I want to talk with someone about it, it's not necessarily helpful for them to be like, well let's come up with a five point plan for how to make your day go better. A lot of times what people are actually just looking for is someone who's gonna sit back and listen to them, and not judge them, but just let them feel that way. And that the mere acknowledgement of your pain can help to heal that pain.
It's so interesting because I, myself, come from a family of doers. We're hands on lets get there and fix it. The act of listening looks like a very passive activity, because you're literally just sitting there, but I've realized that it's not only really difficult to do, but it's one of the most helpful things you can do, is to shut up, not try to solve things, but just to be there and to listen, became one of the most important things that I could provide to Giulia. If she was fearful about a relapse, that I shouldn't get in there and try to talk her out of that fear, but just to let it be. And if she was feeling suicidal in a moment, as long as I was with her, and I knew she was physically safe, those feelings couldn't ... they were sad, they were hard to hear, but that didn't mean I needed to deny their existence. Instead, I needed to do the exact opposite.
I really do think that what our love looked like when we met and got married, has changed a lot over the last 10 years as it's been reshaped by this, her mental health diagnosis.
Jessi Gold: I'm struck by a lot of what you've said. One thing I was thinking was you mentioned that a lot of people write about this, the parents writing about children, and often times when people get sick they take on the parental role for the person that they love. It sounds like you tried to not do that, as much as possible because you still-
Mark Lukach: I think I very much did in the beginning. I think it was instinctive. On the one hand I get where I was coming from. If Giulia was left to her own devices, she would have stayed in bed all day, or she would have done something much worse, like drive to the Golden Gate bridge and jump off because she talked about that all the time. I know that's something she wanted to do.
There had to be a part of this where I was controlling and dictating how she spent her time, in the way that a parent does a child. I had to learn the balance of saying, yes, I'm here to keep you safe but that doesn't mean I'm going to try to run your life. I didn't do that well at all in the first episode. The first episode I very much ran the show.
After the first episode, when Giulia was healthy and balanced and stable in between, she was really mad at me, and I couldn't understand why. I was like, I just basically gave up my life for almost a year to take care of you, and you're mad at me? How does that work? It was because she felt like her voice was not listened to during that care. If her doctor said something, and Giulia said something I was going to instinctively listen to her doctor. I would write off Giulia's perspective as well she's sick, right? She doesn't get it, the [inaudible 00:20:05] is worth it because the medicine are helping stabilize the psychosis, so you'll be fine Giulia, don't worry about it.
Instead, I had to really see and experience her resentment about how I had treated her to snap out of it and realize, I'm not helping by treating her like a child. I'm not supporting her by parenting her. I actually need to let her have a voice in this whole thing. It's hard to let someone have a voice when they think if you come near me you might get infected by the same devil that has infected me.
This was really what that magazine article I wrote was really about, was that we needed to basically work in between the crisis to plan for the crisis. If we faced a crisis, I would be able to advocate for Giulia's point of view because she had already shared it with me. As compared to not talking about the crisis, getting into it, and then I just have to act on instinct and hope that I'm acting in Giulia's best interest, but not actually know that for certain.
It took a lot of failure to get to that point. I tried to be honest about that in my book because I'm not saying that to judge myself and beat myself up, but because that's just the process it kind of has to go through. You kind of have to learn by doing, what it is to support each other, because you don't know what that support needs to be until you actually face it.
David Carreon: The way you approach your story and looking at your own part in how things could be better, I think this is partly what you were talking about before in what we've experienced a lot too in terms of the stigma. "Oh, well they're just crazy." We are the ones whether it be Psychiatrist, or the institutions or society, we know best the people who have mental illness, they don't need a voice because we're going to be their paternalistic doctors or-
Mark Lukach: Right.
David Carreon: We're gonna be the ones who get to say what happens. I really appreciate your reflections on why can't you just approach to people who are suffering it isn't necessarily helpful but at the same time, the other side of it which is well, nobody talks about this so how could anybody know what the right way to approach somebody with a mental illness is?
Mark Lukach: Exactly. You have to stumble your way through it because there isn't a roadmap out there. I wrote a memoir, I didn't write a how-to book, but my hope is that people can learn from the mistakes that I acknowledged that I made in order to, hopefully, modify how they might approach this if it faces their family.
Jessi Gold: Yeah, and you mentioned when you wrote your story that all these people started writing in saying thank you so much for telling your story, here's my story. What do you think stopped other people from doing it? And then what was it really like for you to have made the choice to become a voice for that.
Mark Lukach: I get it. We as a society are not very respectful towards mental health. I distinctly remember being, when Giulia was in the hospital the first time, and she was experiencing auditory hallucinations, hearing voices I on the radio heard a commercial where it was like a bunch of celebrities saying how crazy the prices were on a new car. And the person was like no, what's crazy is hearing celebrities tell you to buy this car. It's like the entire premise of the ad was to make fun of auditory hallucinations, right? Here was my wife at that moment in the hospital experiencing those and there was a marketing scheme built around what she was going through and suffering through.
I totally get why people want to keep this to themselves. And I also understand people are private. I, of course have things that I want to be private about, but I'm just generally more okay with sharing. I don't think this means that the best solution for everyone is to go around and broadcasting your story to everybody, but I do think that if you feel like you trust people then you can let them in and they might be able to help in a way that you wouldn't expect if you're too afraid to let them in, you know?
The reason Giulia and I wanted to go more public is because at the core I trusted that I was telling this story in a way that respected Giulia's dignity and that was protective and nurturing of our marriage, that I wasn't at this to vent about the way things have been, even though there's certainly moments where I'm frustrated.
Even though, most people who read this book I don't know them personally, I'm still secure enough in how it's written that I trust how they're gonna read it. I don't think they're gonna go there and be like, wow this dude's exploiting his wife's illness just to write a book. I know that's not what I was doing. I'm pretty comfortable that that's not how it comes across.
Just being out there has been interesting, because I'm a teacher, my kids all know this book is out there. Many of them have read it, many of their parents have read it. I think I operate in my school a little differently as a result. I have certainly had families have shared with me things that they probably wouldn't have otherwise, because they see a little bit of a kindred spirit now. It's funny, let's say I'm a party, and they're like, "Oh what do you do?" I'll say I'm a teacher. But if I say I'm a writer they will ask well what have you written? And that's gonna lead to a much longer conversation that I'm not necessarily always up for in a social party.
It's really funny, Giulia and I have this thing there's some people where it's like yeah you've read our book no big deal, but there're other friends we're getting to know, we feel like we have to share this at the right moment because you want to make sure you actually have the time to get into this whole background, and it's not necessarily something you always do with casual acquaintances if that makes any sense.
David Carreon: Absolutely. I think I've had that experience, "Well what do you do?" "Well I'm a Psychiatrist." And sometimes they'd say, "Oh well I have a question for you." It's like "Oh no, this is an Uber. I just wanna go to the airport."
Mark Lukach: Yeah exactly.
David Carreon: I'm curious about how telling your story ... so there're changes in how you, professionally as a teacher, how does this change? How does it change, if at all, your relationship with your wife?
Mark Lukach: I think that the book was, the writing which took many years, was something that may have in fact helped save our marriage. Because, it became the way that we could communicate about this. I said earlier after the first episode Giulia was really mad at me for how it had felt to her. I was really wounded by that because I felt that my experience was really invalidated. In those two feelings we had a really hard time communicating about what we had gone through. We couldn't sit there and talk about it face to face.
I came up with idea, well what if I write to Giulia about it, because then I can make sure that what I'm saying has been edited and is presented in a way that is more thoughtful than what I might just say in a conversation. Then Giulia could read it in her space, and that could be the invitation to have the difficult conversation because a lot of it's already out there.
The writing for me and the reading for Giulia was a conduit to a lot of healing for the two of us. Then what I would say further is that it's also become an anchor of the standard we want to have for our marriage. Which, obviously is not always lived up to. Marriage is certainly not perfect, and there's a lot of frustrating moments. I think there's a lot of idealism in this book about what a marriage is and how two people in a partnership can and should treat each other.
A lot of times when we're not being great to each other, one of the things that might check us is like, hey lets not forget what we agreed we wanted in this book about how we want to treat each other. Let's try to return to that way of being and not this less kind way that we're being right now.
It was kind of like a declaration of this is what we want our marriage to be like, unconditionally supporting, listening, hearing the hard things, and not getting mad at each other for them. Of course, we don't always do that in practice, but at least we can remember that we have done that before. We want to aspire to that in the future as much as we can.
Jessi Gold: Were there times when you were writing this story where you remembered something and she was like, "That didn't happen." Or "I never said that." Or a time where you remembered something and she was embarrassed that that had happened?
Mark Lukach: Oh yeah, definitely. Giulia had the first veto power for what ended up in the book, and the process was always kind of funny. I'd work on a section and I'd send it over to her, and she might not read it for a few days, so I'd be working on a different section. I would just hear her like, "What? You want to put this?" So then we would have to talk it out.
Yeah, we definitely remember differently, but that's okay. I think Giulia got to understand that this book is from my perspective, I think that's what makes it different, and I think that's why it's resonated with readers because it is from the caregiving experience. There's a lot of stuff that Giulia remembers from being in the hospital that's not in there because I wasn't there, and those aren't my memories.
There's a lot of ways that I interpreted situations that Giulia may have interpreted differently but she gets it, like really at the core, while this is about us and this is about our marriage and it's about her illness, it's through my lens. That is the lens that is so, I believe, underserved.
It was good, and even just that process of editing it, like I said, it forced us to have these difficult conversations. I think it forced us to confront something that is so painful, and your natural instinct is you just want to move on from difficult times and bury them in the backyard and not have to deal with them. But we kept forcing ourselves to reexamine them over and over again, and I think that puts us in a place where, now, we both feel like we've really accepted what we've gone through, and don't continue to feel the pain of it anymore.
David Carreon: I really like that way of putting it, that it was not feeling the pain of it anymore that you've come to some conclusion or some resolution.
Mark Lukach: It does kind of feel like that. Yeah, the book does feel like a conclusion in a way, even though we know that the journey still has a long way to go, at least the trauma of mental illness feels like, it's not traumatizing anymore.
David Carreon: As you describe this, I imagine some of these lessons might be more broadly applicable to, two people in a relationship have different perspectives on a particular event or having to come to terms with strong feelings or challenges. Have you gotten any feedback from people who read your book who might not be in the caregiving role or people who might find, well this was accepted as a New York Times Modern Love column, not necessarily a Psychiatric Times Modern Love column.
Mark Lukach: Yeah, no for sure, I actually do think although this book is about mental illness, it's primarily a love story about a relationship. What I'd say is that I've had readers who have reached out to me saying this speaks to my experience so much. Then I have others who just like at a book event they might be like, well I haven't experienced mental illness, but, I'm in love and I'm in a relationship. So it still felt like it was really relevant to them.
That is also really ... to something as you know, this piece of work that I put out there, the fact that people are reading it, whether they've confronted mental illness or not. It's interesting because the title makes it very clear what this book is about, right? "My Lovely Wife in the Psych Ward." You know you're gonna be reading a book about mental health.
At first Giulia and I wished that maybe the book title could be more subtle, and maybe not so avert about setting the parameters of what the topic was gonna be. But now, both of us really understand the value of the title, which my publisher was pushing very hard, because it's an invitation to see mental illness in a different way, but also to see how universal the experiences of caregiving and being in love are regardless of what the circumstances are.
Jessi Gold: You've also mentioned that being in a caregiver role in a hospital can be complex, and sometimes non-acknowledged. Can you talk a little bit more about that, and what your experience was when she was sick and in the hospital and you ... even maybe in the later times where you knew a lot more about what was going on and had more opinions and had her opinions too.
Mark Lukach: Yeah. That's a great question because, unfortunately the day of admission, I felt just so ignored. Like we showed up and they're all focused on Giulia, which I get, but they basically were like go away, to me. Like we got this, we're gonna handle this, just come back during visiting hours. Without really orientation to me of where we were or what was happening, any of that stuff. I found that to be really frustrating.
I did appreciate that there was a social worker who was dedicated to Giulia's case and I was allowed to communicate with the social worker, that was helpful. She helped me make sense of it, but honestly, I just had to go see a therapist in order to, not only help me process, but even just understand the logistics of what was going on.
I called my insurance company and said, "Hey, my wife's been hospitalized with a psychotic episode, I'm basically going through an existential crisis and I would love to speak to a therapist through this." And their answer was, "Sorry, you don't have any diagnosis, so the most we can give you is 30 minutes of therapy a month." Which to me was infuriating. I ended up just paying out of pocket, because caregiving itself is not acknowledged as a burden, as a medical or psychiatric burden, even though it obviously is right? Caregivers have sacrificed their own health to take care of someone else and then end up having their own health issues, whether they're physical or emotional.
Giulia's been hospitalized three times and it was not until the third hospitalization that I had one of her doctors ask me how I was doing. I think that was really ... when it happened I realized how desperate I had been for one of her professionals to treat me as if this was also difficult for me, and that maybe I needed to be acknowledged in that front, you know? It's really hard.
Also, I say this, and I don't want to blame the doctors who Giulia has come across, because I absolutely know that they were clearly professional, doing the best they could in the circumstances they were in, which is often way too many patients, not enough time to get to know your patients. How do you even possibly have the time to get to know the patient's family and to be able to support the patient's family at the same time?
If I had one wish it was that, we just create more time and space for the professionals, the nurses and the doctors, to not just have to treat their patients as individuals but to be able to treat their patients as interconnected family members and friends and professionals and all those other things, so that they could be inclusive in how they were able to treat their patients. Of the perspectives of those who care for them and worry about them and want to help out.
David Carreon: I couldn't agree with you more. I think this is such an important and overlooked, I'm probably guilty of this myself as, when I was on the in patient board, it is difficult, but on the other hand, Psychiatry as a system needs to take seriously the fact that we're not doing most of the work. It's family members and parents and siblings and neighbors and the other people in somebody's life that are doing the heavy lifting of the day to day stuff. They'll see us once things settle down maybe once a month or once every few months.
Mark Lukach: Exactly.
David Carreon: There's every day between those things. I am glad you're telling your story; this really is an underappreciated, and frankly underdeveloped part of the mental healthcare system. How do we better partner with the families and friends and romantic partners?
Mark Lukach: And I get that too, because as a teacher, I often treat my students as students. I don't always treat them as children who have parents who are worried about them, or children who have siblings, and who when I'm at my best as a teacher, it's remember that and not just interacting with the kid, but also taking the time to reach out to their family and see how this is going for them, and how they're supporting them at home and how I can partner with them as an educator. That's when I'm at my best. But it's so rare that I have the time for that right? Because I got a stack of papers, and I've got a lesson plan and all of that other stuff. I think education has those same challenges that mental health has. It's definitely a team effort but the members of the team rarely have the time to actually talk to each other.
David Carreon: If we get a start over, in all the bureaucrats and paperwork and all of that, if we could do it right, what would you want? What sorts of groups or support or therapy or team meetings, what would be best? What are some things that you've imagined or wished for happening? Certainly yes, the doctor to give you the time of day, that's nice. I hope we can meet that and exceed it. What are some hopeful things that we might be able to do in the future?
Mark Lukach: Well that's a great question. I think waiting rooms need to look a whole lot different than they do. I think waiting rooms, there's just so much dread and unknown in them. Usually the only person there is either a security guard or just like the person who processes the paperwork. What if instead you actually had people in the waiting rooms? Whether it's volunteers who say, hey I've been in your chair so I want to be here available to talk to you, or whether it's trained professionals who are able to answer any questions.
Because the waiting room is where it all starts. And when it starts on a tone of, the doors closed we'll let you in when we're ready for you, otherwise we're just going to be doing this work off out of sight. That tone becomes pervasive throughout.
I also think that, like when Giulia was admitted, they basically, well it's really hard though too because you need to think about the privacy rights of the patients, but I wasn't allowed to be there at Giulia's admission, and I wish I had. I feel like they were diagnosing the experience of her symptoms, that maybe I could have contextualized them and provided a timeline that Giulia wasn't able to provide because she was so psychotic and delusional. She's not able to chronicle what she's going through, she's just experiencing it. So they're labeling it. I felt like maybe the initial start could have been better if it wasn't just about symptom treatment, but about hearing the whole perspective.
Honestly, I'm not sure too much beyond that because here's the place I get stuck, I want to be more included, and have my voice heard more, but I also don't want my entire life to revolve around my wife having Bipolar disorder. There's times where like, especially as the author of this book, I don't want to be a mental health advocate 24 hours a day 7 days a week. I don't want to be doing nothing else beyond supporting her Bipolar. I also want to chill out and have fun and get to turn that side off. I think it's a hard thing between inviting people in and also not mandating it. There are some people who probably aren't as talkative as I am and maybe they just need to have their space.
It's really hard to get into strategies other than I just wish the system was more inclusive. If there's one word that I think is so lacking, it's inclusivity. We need it, we need more voices in the room, if they want there. We need more time to hear each other out and not just be told, this is the prescription because, and good luck getting them to take the pills they don't like.
Jessi Gold: Yeah.
David Carreon: Yeah.
Jessi Gold: It's interesting to me because it sounds like, as a psychiatrist we often feel like we have an emotionally heavy job and we're dealing with stories that are sometimes hard to explain to other people, and sometimes we choose not to because they are heavy or dark. But you already shared it. How do you keep those boundaries for yourself and really practice good self-care with your story out there anyway?
Mark Lukach: That's a great question. That is one that's exacerbated, I think that's the word, by the emails that I get, which are so difficult to read. They're so heartfelt and clearly full of pain, and I feel an ... I should put that in the past tense, I felt an obligation to respond. I would beat myself up if I didn't. I wanted to honor with an equally emotional reply and so just managing email became, for me, impossible. It really did. I felt stuck. I felt constantly moping because I was hearing all these stories and feeling like I wasn't responding to them in a way that was meaningful enough. So, what I've had to do is make peace that I can't actually respond to everybody. I can't be there for every mental health crisis that everyone else is going to go through. Obviously, I can't.
My hope is that even just them writing and knowing that someone read it, hopefully that enough is a start for them to heal a little bit. That's a way where I have to take care of my mental health and my sense of stability, and not take on the challenges that everyone else is facing. I've had people who they're like, hey I'm in the [inaudible 00:47:38] too, I'd love to meet. Do you want to go get dinner? I'd love to treat you to dinner. I've never done that, because, it's not that I don't want to meet new people, I just know that I'm not a professional, I'm just a guy that wrote this book and I'm really pleased and honored that you read it, but that doesn't mean I can necessarily help beyond just writing that.
I think it's this acceptance of what my therapist said, good news, bad news right? You're not as powerful. For me that's a good news one because it's like, I don't have to take all these situations on, I still can focus on being a dad and a husband and a teacher and also just an active person who likes to play outside. And that's okay because that's allowing me to be the best person I can be, even if it means I can't respond to everyone who reaches out.
David Carreon: That's a great answer, and I think important certainly in the domain of mental health care, but probably for everybody.
Mark Lukach: For sure, and I can imagine the way your day feels. You need to shut it off and not just spend all night fixating on it because otherwise you're gonna go down, and probably have to process your own stress. The school that I teach at, some people live on campus, I do not, and a few of my colleagues, their partner also lives and works on campus. I've just kind of thought that probably means it's really hard to get a break from teaching, which is also a pretty emotionally draining job. I actually realized how lucky I am that my partner is not in education and so, I can go home and not feel like I need to keep talking about my job, talking about my job. Instead, I can just give an update as it feels right, and otherwise, be in whatever our family moment's in and be able to step away from the emotional demands of my work.
David Carreon: We appreciate your perspectives on so many diverse issues, touching on your story. We've got a few more rapid fire question before we wrap up. So in a sentence or two, what is your favorite book?
Mark Lukach: So my all time favorite book is "Infinite Jest" by David Foster Wallace. I read it for the first time in college, and I have read it two subsequent times. It's over 1000 page book and it's really dense and I just adore that book. I think it's so brilliant and funny and heart breaking and so well written.
Jessi Gold: Yeah. You've mentioned some of these but what do you think psychiatry gets wrong?
Mark Lukach: I think that Psychiatry gets wrong treating someone who's sick as if they are an island. I also think Psychiatry gets wrong that medicine, someone often has to be there to administer medicine. If it's really unwelcome medicine that's a really difficult situation to be in, to have to be the husband who loves someone and more or less force them to take pills that they don't want, without training, without the opportunity to talk about it with the caregiver. I really think the exclusion of the caregiving perspective. I hope you're gonna ask what I think Psychiatry gets right, because I don't wanna just be totally bashing Psychiatry.
Jessi Gold: Sure, yeah what does it get right?
Mark Lukach: It saves lives, there's no question about it. The advancements we're making in the understanding of the brain, although there's still a lot we'll probably never learn about the human brain, there's no question about it, the Lithium that my wife takes has kept her alive, it's allowed her to thrive in her career and as a mother and as a wife. It's been through compassionate doctors that have helped her get to finding that pill that's saved her. I think that what Psychiatry gets right is that the people I've come across in it are good hearted kind people who want to help and are dealing with an infinitely complex issue of the human brain and are just giving it their best. I've never had an experience that would lead me to conclude that Psychiatry is out for anything other than helping.
David Carreon: Great. Who is a hero of yours? Either alive or dead, fictional or real?
Mark Lukach: I'm gonna go with the generic one which is probably both my mom and my dad. My dad is the most optimistic, upbeat human being I know. He gives me a lot of motivation to practice gratitude and celebrate the joy of life. My mom is probably the person who I modeled my caregiving after. She's so unconditional and reliable in a crisis. We counted on her so much throughout these years of parenting and mental health. I really admire them as heroes for sure.
Jessi Gold: What tips would you give to someone who is love with somebody who has a mental illness?
Mark Lukach: That's a good one. I would say first the most important tip I would say is to listen. I think everything else is under the category, the umbrella, of having the courage and the patience to listen, to really hear the experience of the person you love. Even if they're mad at you. Even if they don't like what you think is help, even if they think that the help is hurting, you have to hear that stuff. Listening, I think, is one of the most pure acts of love. Mental illness, what they might say can be really scary, really hurtful, really worrisome, but just listen. I think everything else from there will fall into place.
David Carreon: All right. Well, thank you so much for joining us-
Mark Lukach: For sure.
David Carreon: And, we want to just appreciate you and appreciate all of the perspective you've given us.
Mark Lukach: Yeah absolutely. I really appreciate your interest. I especially like the opportunity to talk to professionals or an audience of professionals because you all know this field. The fact that you didn't think I was being mean to you in this book, I'm so relieved. I was so worried when I wrote this that people might read it as boy, Psychiatry is really bad. These people are doing bad things. That's not it at all. It's flawed, I tried to look at some of those flaws but it makes me hopeful that people in the mental health field also see those flaws and want to do something to make them better. So thank you so much.
Jessi Gold: Of course. And we also want to encourage people to go get your book if they want to learn more and read more and read your columns to also get to see your voice on paper.
Mark Lukach: Awesome, yeah well thank you for that too.
Jessi Gold: Of course! Thanks for joining us.