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.