Talking with Sarah Yoon

Sarah Yoon asked me to use her English name. She continues to sift through her feelings and her identities. “At this moment, right now, I’m trying to figure out who I am. Again,” she says. “I thought I knew.”

Here, she talks about life as a Korean-American and cultural pressures to not show the effects of stress, how her therapist made a crucial connection by disclosing her own past depression, and whether she thinks she’ll ever be “cured.”

Who are you? Please introduce yourself.

I’m Sarah, I live in Queens, and I was raised here since, like, kindergarten. I immigrated here. I went to college and grad school out of state. I’m currently 33 years old, and I’m currently a math teacher. Although that might be subject to change.

You teach at a public school?

Well, I’m a certified math teacher, but the school I was in got downsized. They didn’t fire me, but I became an ATR; basically, I go to different schools every week. Considering I had a bad year last year, I decided to take it pretty easy. I’m taking a class right now, and it’s easier than teaching full-time. I’m currently doing a master’s program for a professional degree.

How did you find me?

The thing is, since I’ve experienced you-know-what, I don’t know if “comforting” is the right word, but I feel at home when hearing other people’s stories. Of course, different people have different situations, but I just feel like I’m not completely alone, you could say. Of course, you know, it’s kind of risky to read because it might trigger something, but at that point I was doing a lot better to do such things.

How are you doing these days?

Well, for me it’s been up and down, honestly. Every day and every week are different for me. This week is fine for me, but I don’t know what next week holds. I’m doing a lot better than a year ago, but I do have moments where I do have a breakdown, I guess. Now, it’s like once every month or two weeks. It used to be like every day. It was pretty bad last year.

How did you come back from that?

Well, it took a lot of willpower, honestly. Right now, I have a therapist I’ve been seeing three or four years so far, and I forced myself to see a psychiatrist, and I’m on two medications right now. I guess I try to keep myself busy. And although I have friends who have been a little flaky, they have been encouraging and stuff like that. Ironically, my ex-boyfriend has been the most supportive.

How did you decide to tell people?

The thing was that last year, and two years ago, were not the first times I had done these things. I guess six or seven years ago was the first time I had done these things. In 2007, I was hospitalized three times. And I’ve been trying different medications, but they really didn’t work. At that point I had a pretty good community and was able to bounce back pretty quickly.

I think this year, my depression was triggered by a breakup, actually, a breakup that shouldn’t have happened, and he kind of regrets what he did. I guess it got me into a state of confusion. I don’t know, I’ve been reading a lot of books, and it’s been a long process. I’m still recovering, honestly.

How did people respond?

Seven years ago, I was hospitalized, but it was up ’til the last attempt that my parents knew about it. I had no choice but to tell them. The first time, I didn’t tell them. When I did tell them, they took it extremely hard. They pretty much cried for two hours. My parents had a hard time because they come from a very conservative background, very Asian. It took a couple years to be on terms with it. This one, honestly, I was hospitalized once last year. My therapist urged me to tell my mom, and you know, my therapist spoke to my mom, and my mom got angry because I was drinking quite a lot. I don’t drink anymore. It’s a very slow process.

And with my friends, they come and go, honestly. Some people couldn’t deal with it, they kind of like walked away. The other half are extremely nonjudgmental, very encouraging. Ironically, my ex-boyfriend was at the point where it affected him, actually. And of course, his mother was opposed to us dating, that kind of thing. I know, it’s like a weird situation. But I became so depressed, more than I thought I’d be because we broke off the relationship. But I mean, I’m trying to move on with my life.

And I have very few close friends. The ones I have, they’ve been pretty awesome, trying to make sure I’m OK. They’ve been very gentle, very accommodating. I mean, they’re like a little younger than me, and some of my closest friends are not of Asian background. I don’t know why, it was easier to talk to them. A couple of my Asian girlfriends couldn’t deal with it, maybe because they’re kind of fake, I don’t know. One of my friends from college, for like 10 years, kind of fell off the face of the earth. The other one, she said she’s always busy, but I think she feels incapable of dealing with this. My ex-boyfriend is a very strong person and couldn’t deal with it, either.

What made you decide to speak with me?

The thing is, I’ve always been passionate about mental health and the stigma of mental health, depression, whatever mental illness. And for me, I think it always is something, a cause, that I want to be part of. I’m Asian, and Korean. And most Koreans have difficulty accepting it, but in Korea, they have the highest suicide rate of the world. It’s pretty ironic, actually. I have a much older friend who is Korean, she’s actually a professor at Harvard, and I think every year she goes to Korea to kind of, like, raise awareness about mental health. I feel that’s courageous and noble.

Why does she do that?

I don’t if there’s a personal thing, but it is something she’s always been passionate with. She’s got a doctorate in psychology, a mental health worker.

You mentioned conservative and Asian. Why is that, and do you think it’s linked somehow to the high suicide rate?

In Korean culture, I think, we were kind of taught to suppress our emotions. I think our identity comes with doing well in school, in life, being a good mother or father. In a way, and I’ve thought about this a lot, I feel our emotional being is neglected. I think it’s the last priority our parents teach us. I have to be true to myself. I see it in my friends as well.

How do you even start to change that? Should you?

It’s a very big task to raise awareness. I mean, I haven’t thought too much in a full extent, but given that I’m an idealist … I don’t have a solution, though.

But with your parents, are you more open?

We don’t really talk about it a lot, honestly? Given that we go on with our lives, I guess they just accepted it. It used to be case where my mom was opposed to me getting medication. Last year she was like, “Try to get off medication as soon as possible,” and I’m like, “Am I going to take this for the rest of my life?”

Sorry, I sort of lost my train of thought. I was on medication a couple of years ago when I first attempted, and I guess I’ve been, like, changing medication all the time because one thing didn’t work and another didn’t work. My biggest mistake was to get off medication on my own volition. I think because I wasn’t maintaining my well-being, that’s also the reason why I kind of crumbled. When I went to the hospital, I had no choice because the psychiatrist kind of forced me. Not forced me, but highly encouraged me to take the medication. I got over my stubbornness. At first I was like, “I’m not going to take medication at all.”

What else have you done for yourself?

I’ve been trying to focus on myself. I don’t know if that’s wellness. For me, I think my problem has always been worrying what other people thought of me. My happiness depended on my relationship with other people. At this moment, right now, I’m trying to figure out who I am. Again. I thought I knew. I’m just trying to figure out what works best for me. I mean, this math teaching career, I’m not completely passionate about this career, so I’ve been thinking what career is best for me, so I’m trying to figure that out. Another thing I’m doing is, I’ve been trying to watch what I eat because, you know, your food and your mood is connected? I’ve read a lot of things. And trying to balance life with sleep and stuff like that.

What would you like to change about the kinds of support and treatment you’ve received?

I mean, nobody’s perfect. My therapist and psychiatrist are doing their best. And at times, my therapist doesn’t understand me. But I guess, of course, there’s nobody who can inside and out understand me completely. But I guess they’re trying to understand me?

In the history of all my relationships, I feel like I’ve always been betrayed a lot. And not just romantic relationships. That’s where most of my depression comes from. I wish the quality of relationships would be in a way where I wouldn’t feel judged. And I guess for me, loyalty is big. And to not be judgmental.

I guess it’s easy to be judgmental on topics like mental health?

Definitely in the Asian-American community. For instance, a girl I was in the hospital with, she was Korean, a good 10 years younger, her parents know my parents. A few months ago, my mom found out she had jumped off a bridge and killed herself. It depressed me a lot, actually. Of course I knew the girl, sort of. I thought about her situation, what would have been the step for her to have not taken that step, if you know what I mean? What preventative measures could have been done? It just says a lot, I guess, that issues of mental health are so suppressed. I don’t know for different races, but at least in the Asian-American community if you’re depressed, it’s kind of like it’s your fault, like you lacking in something, you now? It’s hard to take.

And a lot of people have absolutely no idea what this is. For me, I experienced depression, I lived through it, I know what it is. But for your regular Joe Shmo, they have, like, no clue. I spoke to my pastor at my previous church, they’re good people, no mistaking me, but they’re, like, kind of ignorant. Because, like, they don’t really know what it is. And that bothered me.

I mean, my ex-boyfriend is Korean but a very understanding person. He’s done research to help me out. He got into depression because of me, actually. It’s pretty sad. Two of my closest friends are Caucasian and African-American. They understand me. I feel more comfortable with them. They don’t look at me with the strange eye, you know? If I have a bad weekend or something, they’re always there for me.

What about your colleagues?

For me, the church knew, but they were really great about it. I don’t know how that came about, but they were very good to me. But this time around, because I became older, in my early 30s and more mistrustful, probably like only about seven people know. Definitely not more than 10. I definitely will not tell my colleagues, people I’ve been to work with. Last year, when I attempted suicide, my boss and other math teachers absolutely did not know what I was going through. At all. I just covered for it, I guess. I guess I did a good job considering the state I was in.

I guess my biggest fear is telling my extended family. They live in Korea, and I don’t know. They like to compare me with a lot of cousins. I’m afraid if they knew about my depression or attempt, they’d be kind of like putting me down. And also, you know, the church that I left, I did not feel comfortable with the people because they were superficial, like a high school. And it would have been really hard. One of the girls, she’s actually  a social worker and an advocate of mental health, Korean-American, and it was comfortable for me to talk to her. But for the rest of them, definitely not.

You like in Queens, a very diverse community. Does that help?

A few years ago, all my friends were Korean. For some reason, I felt like I didn’t connect with them. I always felt like something was wrong with me. But given that I work in a profession where there is diversity, I met a lot of Hispanic teachers, Caucasian, and I realized I was extremely comfortable with them. It’s like a recent epiphany.

You mentioned wanting to be a mental health advocate. What do you have in mind?

It’s still a thought in process, but I’m trying to figure out how to help. I mean, the thing was that in my mid-20s, I have a master’s in school psychology. What happened was, I guess I breached confidentiality and pretty much got kicked out of grad school. I loved the program, and I looked forward to becoming a school psychologist. And even after all this happened, I guess I got kicked out after my first set of attempts. It was chaotic. I guess I felt like my hopes and dreams were gone; I thought I wouldn’t be able to return to the field because of my history, my past.

I tried to apply for Ph.D. programs, but of course I didn’t get into any of them because part of my transcript was not complete. And then, I guess, the reason why I got into being a math teacher was because I was more interested in adolescence and mental health. I first became depressed around 15 or 16, actually. Since I remembered my experience as a teen with depression, I guess I wanted to relate. But I guess being a math teacher took over.

But at some point, I do want to became a therapist myself. Kind of like food for thought.

Just checking, you weren’t kicked out because of your attempt? Because that’s illegal.

No.

(We talk a little about disclosure, especially in the mental health world.)

My therapist actually shares that she had a long period of depression. I guess my depression was so severe that she mentioned it. I think we’re comfortable enough where she’s able to share her experience with grief and depression. She didn’t attempt suicide, but at some point she was able to relate to me. She’s extremely empathetic.

Do you think all therapists should be open like that?

For me, I think it’s a positive thing. If I speak to a person who’s never even been through depression, that person could do so much research on it, but he or she wouldn’t know the full extent of it.

My therapist is much, much older, in her 60s, I guess. Her depression happened long ago, in her 30s or 40s. I guess for her it’s something she has let go of? Like a phase she’s moved off from. That’s why I think she’s comfortable. She didn’t share, like, her whole life story or anything. She went into depression because her husband died. She just talks a little bit; she doesn’t talk about it for half an hour. If she feels like it’s necessary. So she can kind of, like, use her life example to, I guess, for me to relate to her.

Is there anything you’d like to add?

I guess the past year has been a little crazy for me. I was rock bottom, honestly. For me right now? I just feel like I’m still digesting it. It just seems so surreal that I felt this much depressed. And it’s kind of like, when you go into depression you have a difficult time seeing what’s in front of you, focusing. Even to this day, I sometimes have difficulty being motivated. And on a bad day, I don’t want to do anything. My last bad thought was maybe three weeks ago? I’m still trying to come out of this. I’m not fully recovered.

Do you think you can be cured?

Personally, I’ve thought of that question. I have absolutely no idea. I want to know the answer. There are times I’m able to say, “I’m able to recover from this.” I watched a lot of documentaries on the BBC, etc., but I hear people who have depression for 10, 20, 30, 40 years, whatever.

For me, I’ve always never been normal. I mean, not normal as in “Am I weird?” but normal as in terms of mood. It could be extremely low or extremely high. I mean, I forgot to tell you that last year, also like six years ago, I went into a DBT program. Six years ago, I was doing partial after my full. During the day, I was in the hospital, a partial hospitalization program only for women. That helped considerably. I did it last year. I was there for a good six or seven months. Every Saturday I went. I mean, of course, I was too depressed to kind of practice all that. But it takes a lot of willpower.

Do you do it now? Does it help?

I guess for me, I’m in the process of digesting a little bit of everything right now. I’ve been trying to keep myself busy. I tutor two kids twice a week, and I’m starting to study for exams. I don’t know, staying busy kind of helps. Although it could be not a good thing.

Who else are you?

That’s a very hard question. I’m a good friend, a very good friend. And I’m good at art, good at math, a good teacher. I can relate to people pretty well. I don’t know if it’s relevant to say … I’m naturally very reserved, though you probably wouldn’t believe it. I have a lot of interests, actually. I guess, you know, sometimes I could love being around people. I have a lot of fears, obviously. And I’m Asian-American, Korean-American, American. I guess I’m trying to find my American-ness, I don’t know if I can say that. I’m a jack of all trades and master of none.

The thing is, I’m extremely jaded with romantic relationships. And although I tell my mother or father that I’ll never get married, but in all honestly, I would really want to become a mother. And then I feel like my life would be different. I’d be a good mother. My problem in the past was, I was too nice and people took advantage. You know, always try to find a balance in life. Not be too nice to people. So, you know, eventually I want to get out of my jadedness in people and hopefully not be a cranky old lady, and hopefully will come out of this depression 100 percent. Hopefully. I think it will always be part of me, since I had it since I was 15 or 16. Although, like, I’ve felt hopeless, I actually feel hopeful most of the time. I want to be hopeful and optimistic.

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Talking with Lilly Glass Akoto

Lilly Glass Akoto is a licensed clinical social worker, and in the course of this conversation she said something startling: “I never got any training, no specific training on suicidal thinking. … there’s nothing to do with helping someone with suicidal thinking. There’s nothing to do with how to talk with somebody, give somebody hope.”

If social workers aren’t being trained in working with suicidal people, who is?

Here, Lilly talks about the risks of speaking out about suicidal thinking as a professional and her work to address them, her thoughts on whether someone needs to be “cured” before taking on public speaking about their suicidal experience, and how she, as a strong Christian, found it hard to have support in her own church on mental health issues.

Who are you? Please introduce yourself.

I think you asking me that, versus someone else, obviously I would give a different answer. For wanting to know where I’m coming from and why I’m part of the task force, where I’m coming from is 30 years of battling depression. I’m an adult adoptee, I was adopted into a white family and grew up in a white world. The depression started not because something terrible happened to me but because I couldn’t figure out my existence. As a 7- and 8-year-old, thinking why I was on this earth was a kind of weird thing. It makes one feel quite different. So I battled depression. I would cut on myself. I attempted suicide five times. My last was six years ago. And when I tried to kill myself the last time, I got myself into counseling, EMDR. And for whatever reason, that worked so phenomenally well for me. Literally within two months, I was a completely different person. I’m already in the field, and I’d been in counseling for a long time, been doing therapy for others for a long time, and I like to understand how things work. After my very first session, I immediately started feeling better, and I was questioning the process: “Why does this work?” By the second session, I didn’t care. I felt so phenomenally better, I just didn’t care.

And so, pretty much since that healing process, I stuck with her for two years, six sessions of EMDR, and by the end of it, I was a completely changed person. But one of the interesting side effects is that I then had this sort of diarrhea mouth syndrome, where I sort of went around telling people how great EMDR was and how everybody could get healed. I went to extremes: “Hey, yeah, I tried to kill myself, but now I’m doing great!” It was not great. I ended up losing clinical positions because of it. I went through a bit of that. But in my life now, I’m very centered, very clear about it. Now I have a great passion for suicide attempt survivors, a passion for people to heal from brokenness. I don’t know about you, where you’ve been, but for me, a lot of mental health agencies, programs, have been “Yeah, you’ve got a debilitating mental health issue, and we’ll help you manage.” I think that ‘s OK, I want to promote teaching skills, how to deal, but I’m about the next step, healing. That’s really lacking. So that’s one part of who I am, you know.

What will you pursue for professionals?

Right now, I’m thinking about … I’ve been working with NAMI and have a great girlfriend there, and we talk all the time. There’s a couple of things going on with our NAMI here, peer-to-peer and family-to-family, but there’s no professional-to-professional. So one idea is following the same format and introducing to NAMI professional-to-professional, so that professionals have a safe place, a free, safe place to go to process through. And I’m thinking about, like, educating folks about how to talk to their employers, the supports needed in place, how talk to your family when you’re struggling at work. And how do you best manage the duality you feel as an employee. Meaning, you know you’re doing good work, but also you’re now struggling. So how to balance those two so the depression or whatever doesn’t get the best of you. And you’re able to gain some skills on how to get things done. I know a lot of professionals won’t talk about struggling. Instead of that, they sit and suffer with it, and things get worse and worse. I fortunately happen to be someone who, I would run to work because it was safe for me, the one place I felt successful, but lots of people, they don’t even realize the slew of mistakes they’re making on the job. So having a safe place to talk this out without the threat of somebody else, a boss or colleague, reporting them, is sort of what I’m thinking about right now.

And NAMI is pretty receptive?

Oh yeah, they would definitely take that on. Our NAMI is, anyway. The other thing I talk to my girlfriend about all the time is, they’re not good with cultural issues. Our NAMI is pretty white. And you know, you need to pay attention to culture. I’m biracial and navigate the white world better than the other world, but at the same time … I don’t believe in this whole “Make all those exceptions and special things for people of color,” but I do believe that culture matters. So whether you’re a white country boy or a hip-hop whatever, it doesn’t matter. The culture has to be recognized and acknowledged, I guess. And I think NAMI is not doing a good job at that at all. And they just now, now they have LGBT, they have developed a NAMI group for that, so that’s good. But in terms of like, for example, you’re not gonna find a lot of black people here in Oregon who utilize NAMI, and NAMI isn’t doing anything about that.

Why is there such stigma in the mental health and suicide prevention world about suicidal thinking? You’d think here, of all places …

Honestly, I really don’t know. But in my journey, the mental health field was the absolute worst and most painful to me. The question is the exact same question I’ve pondered. How is it that in the mental health world, the world that should understand these things, they are the worst and most persecuting? I don’t get it.

What’s with the liability fears in this field? If this is a potentially fatal health condition, like cancer or heart disease, I don’t understand why medical professionals can accept such risks and treat people while mental health professionals back away.

Yeah! I don’t know how to answer that! I like the analogy you gave. It’s a question that just, every day I’m asking. And again, you know, that’s why I really speak up and promote in my practice that I will work with you if you have suicidal thinking.

I never got any training, no specific training on suicidal thinking. All they do is teach you how to assess, this idea that you assess every session for stability and use a form to ask questions, but there’s nothing to do with helping someone with suicidal thinking. There’s nothing to do with how to talk with somebody, give somebody hope. We were never given lectures on that. But I also went to a school for social work. Maybe in a counseling program, they do. But in a school of social work, it’s not one of things they teach you about.

That’s odd, because I’ve heard some people say they prefer social workers over other therapists.

Yes, and I think the reason is because social workers are trained to think more holistically. I started off on the psychiatry track, but they tried narrowing me into something, and I needed something broader, and social work provided that for me. The reason why folks seem to to do pretty well with social workers is because we are trained to think about your spiritual health, emotional health, all of those different things. Versus just, “Here’s your thinking, and here’s how we can change it.” You know what I mean? I’m biased, but that’s why I think you hear that. And we’re resourcers. You can talk all day to somebody, but if you don’t, you know, you have to give people tangible things, concrete things to work with.

What needs to change?

You know, I think a large reason of why I was so excited to join the task force, I think working on this document personally has given me a lot of hope. I can see the potential of how this document really will begin to change people’s thinking. Just for AAS to go through what they’re going through, “If you sign up and say you’re an attempt survivor,” they’re finally making way for that … I think we’re expanding our conversation about suicidality in general. I think we’re pressing forward.

I also think, and I don’t know, this is just baby thinking right now, but in my experience sharing my story, I’ve been doing it more and more, I’ve been asked to speak. And I’ve noticed the impact my story has is amazing. I’ve never been a person who toots my own horn, but I am in a place in my life where I can recognize the fact that my story does change things. So I was so excited when you said, “Hey, want to talk?” Yeah, certainly! I know putting my story out there, being a professional … I have this funny image in my head of dressing in the most expensive ladies’ outfit, with my jacket and my pumps and everything else, looking very sharp and professional, and then speaking my story. To make the point that I look put together, and I am together in my life now, I’m a professional, but there’s the reality of my story. And I feel like, the more speakers bureaus we can get on board, that’s another way to really begin to change people’s thinking.

Someone had mentioned creating a website. My thinking is, how great would it be to have video vignettes of people telling their story on the website? We live in such a media world, you know, I just think these things are powerful and can make an impact. So I don’t know if I answered your question, but finding people to speak out and doing more and more … Obviously, at some point there has to be people fighting for policy change. There needs to be clearly stated laws within the job contract that say, “If I need to get mental health help, my job is secured.” It’s really clearly written out. We have EAP, but not every place has it, and some EAPs are good, and some are not. Who trains them?

Ideally, what protections would you like for people who are open about this in the workplace?

The basic thing is job protection. I think that’s the greatest fear. You share your story, you’re open about it, and then you lose your job. I think job protection is one. But there’s also this element needed of … I’m trying to find the right language, but … I recognize that, to share my story, not everybody is ready to hear it. So let’s say on the job I share my story, and maybe someone gets triggered. And I’m not saying I caused it, but I am saying that a policy put into place has to not just be for me but for the agency. Does that make sense? I want the right to express whatever I need to express, but also I want safety for myself and my colleagues in the work setting. Lets say I’m working and have worked for two or three years at a place and get depressed and try to kill myself. And that information came out. One, I’d want protection. Two, I’d want the ability to process it with my boss. What about a work plan that’s about your emotional safety? I don’t think there’s anybody who would consider that because they would see it as a threat: “You’re emotionally unstable?” But I would like to see a work plan that doesn’t just involve technical things but also emotional support for people. EAPs give you, what, three sessions a year? Maybe if I’m really struggling, I get an additional three sessions. Tons of people never use EAP. The number one thing is not losing your job. And if a safety plan is in place, to make it safe to talk about it with your boss. If a colleague finds out about it or has to know about it, maybe they also need support.

You mentioned public speaking. Do you think people should be open about still having bad days? Some people have said they feel pressure to come off being “cured” when they speak.

Sorry. I’m only laughing because I think it’s a fabulous question. I’m just thinking how to formulate this answer, because I have an immediate and definitive answer. I believe that anyone at any particular level, meaning two weeks after it happened or 10 years after, I think anyone at any level can speak if _ so here’s my if _ if they’ve had the proper training and are at a proper place to be able to deliver the presentation. Does that make sense? If you and I were having this conversation four years ago, I really wasn’t ready to go speak. There has to be some sort of, and I don’t know what the process is, but I believe people need to be properly trained on how to properly deliver and after-deliver.

For example, Sally, who tried to hang herself, goes to a speaking engagement but hasn’t planned out her day for afterward, self-care things. If she hasn’t been able to think through these things, she’s probably not ready. But if you have researched it and exactly what to do after the speaking, and you know how to respond to different questions that come up, you’re probably ready to go and speak.

Your question though, should people admitting it’s not a done deal speak? Yes, 100 percent, because that’s the story of our lives, our reality. I’ve been in this profession over 20 years, and I’ve always done really good work. But 14 of those I was vastly depressed. I would meet with clients and go home and think about killing myself. But I would still deliver very good services. That duality is there. I’m married, I have two beautiful children, I’ve always been successful in my work, but that didn’t stop me from thinking of killing myself over and over. I definitely think people can talk about it, and I don’t feel that pressure at all to hold back anything, and I’m thinking maybe that’s a problem. I’m way too open. I say it like it is. I also realized that every presentation has been impactful because that’s how I am. And I’m OK with that. It doesn’t work for everybody, but that’s who I am and I’m not going to change it.

Since you mentioned your children, I wondered how you address this issue with them.

Well, this would then be another 20 minute conversation. My older son was 13 at the time … He saved my life. He came down the stairs, in the middle of me hanging myself, and screamed for his father. What a horrible experience, and one that took me a long time to process through. He and I have talked about it a few times, and finally he was old enough to tell me to never bring it up again. My younger son was asleep, and we have never spoken about it. My husband and I have never really processed through, since I attempted right after an argument with him. It is still a lingering issue within our family that I hope, one day, can be resolved. I know that my younger son, for a short time, went through a season of making statements like, “I am going to kill myself” when he would get upset about things. I can only conclude that even though he was asleep, he did overhear various conversations that followed. He and I did talk about issues but more in regards to his feelings, not about what Mommy did.

What else would you like to say on this topic? That’s a pretty broad question.

Yeah, really! Honestly, like I said, I’m at a point in my life where I want to speak my story, and I’m really … Let me back up. Let me share something different. Part of what happened in my healing process is, I got to this point of understanding in an extremely powerful way that I’m on this earth and one day I’m not gonna be. And that’s how simple life became for me. A lot of people that I initially started expressing that to kind of thought that was morbid, “I don’t want to hear that,” but for me, in my now-life, as I often refer to it, my life is just not that important that I … I’m not saying I’m not important, but I’m here on this earth and one day I’m not gonna be. It’s just that simple. So I give everything every day because it could be my last.

What I mean by that is, I want to speak my story and honestly, because I don’t know if someone in that audience is gonna be someone I touch that day and starts to change something in their life. I take every opportunity to make an impact. I don’t know what else to do with my life other than that. Whatever wisdom I have at this point in my life, I’ll share with whoever needs it. It’s so awful, my husband, he’s a very private person, and I’m not. It’s hard for him because of that, but I have nothing to hide, no secrets.

The whole other level for me is I’m a Christian, very strong in my faith. I pray a lot. And so, you know, back to who am I, I would say … To me, honestly I’m Lilly, and I’m a Christian first, and the whole life revolves around the Lord. Everything revolves around that. It’s not that I’m not important, I know I’m important, but my life is not. For my belief system, my life is in God’s hands, and I know he has beautiful and perfect plans for me. And I know there are challenging things going on, but they will lead to something great. But yeah, for what’s it’s worth, that’s kind of the reality of who I am. I’m a child of God, and I live my life that way.

And ironically, that was another area that was not a support to me in my healing journey. The church wasn’t a support to me because the church I belong to, there are a lot of misunderstandings about the work I do in the mental health world. There’s never been a thought to do Christian counseling. I’ll always work in the secular world. The church was like, “Just pray over it. Just pray and heal.” I was like, “Well, if that was the case, I would have been healed long ago.” They didn’t understand the issue, the fact that I’ve struggled with depression. And yes, I’m a Christian, but I’ve tried to take my own life. If just knowing God and praying would have solved it, I would be healed long ago.

I had had a therapist card in my wallet for a year before the incident. And it came out of my wallet, and I started counseling with her. And my whole life changed. That’s about God, keeping a counselor’s card in my wallet for a year. And that’s hard for my church friends to understand. Again, that’s the church I was connected to. I’ve since spoken my suicide story in other religious settings, other churches, and I’ve had a much different response. So yeah. it was really hard for members I went to church with to be supportive.

You kept the card in your wallet for a year. Were you trying the church approach first?

No, it was just deciding to get help. I’d seen counselors but for like three months, whatever. My true friends said, “You need to stick with a counselor at least a year.” When I started with the counselor after the incident, I did it for a little over two years. I made that commitment for myself. No, I didn’t want to get help and didn’t ask for help.

The mental health field must think we’re incredibly stubborn, always telling us to get help and having us refuse.

It’s a cycle, right? You’re depressed, troubled, you know you want help, need help, but you’re too tired or too ashamed or too sick to get the help you need. It’s a horrible, horrible trap, so to speak. Yeah. And I mentioned a few times about the duality that happens, too. I was really super-great at work, and had really good friends and things like that. On the outside, I looked really spectacular. But there was the inside that people didn’t know about, that I didn’t want them to know about, this shameful, ugly, pitiful person. How dare I ruin this image of me?

That was well put. Who else are you?

So I have this name, my name today is completely different from the name I grew up with. I legally changed it in 1994 before my first son was born. My parents adopted me and named me Brenda Joe, which makes me cringe, but my birth mother had named me Gail Celeste. Then I was in a foster home and my name was Muffin. Joy, joy. Then I was adopted. Then, when I was in college, I changed it to Brenna. Then when I went to Ghana, I had been writing about a deaf girl named Lilly. When I went to Ghana, I said people could call me Brenna or Lilly, and Brenna was hard to say and Lilly was easier. When I came back, I legally changed my name to Lilly. Glass comes from when I found my mother. I met her in college, and Glass is a representation of my reality of all my fantasies breaking in meeting my birth mother. I seriously had convinced myself that Oprah Winfrey was my birth mother. Meeting my birth mother, she was no Oprah. Glass represented how my world collided. Akoto is from my husband.

What’s the point of all that? Today, I just feel I am who I am. My current name is who I am, and I feel like up to this point, I was always what everybody else would tell me to be. They had given me these names, had these expectations, trying to make me somebody I wasn’t. Today, I get to just be me, Lilly, a Christian, biracial, adopted, married woman with two kids who works in the field of mental health.

So, yeah. I’m involved in a lot of volunteering, with the Dougie Center, Suicide Bereavement Support, and the task force, of course. And I’m a little bit connected to Eduardo because he asked me to be on the advisory council for his center. And NAMI. So I do lot of volunteer work, sticking within my field. Other than that, in terms of just being me, I love the outdoors, I love the country, I love athletics and all that. And I’m an easy person, you know? My husband doesn’t think so, but I’m an easy person. I get it: I’m here, and then I’m not.

Talking with Robert Scott Wall

Robert Scott Wall has gone from homelessness to lobbying for and helping to create an overhaul of Hawaii’s mental health services. We spoke when he was deep into a crucial legislative session, so expect some bursts of bureaucratic language ahead.

Here, he tells how his climb from a homeless shelter began with a friendly kidnapping by a psychiatrist, a stranger, who saw something special in him. “Get your stuff and come with me,” the doctor said. Still, it took more than four years, and a nasty bout of vertigo, to shake Robert into changing his life.

He knows that not everyone will be able to do the same. “I’m fighting for those people in shelters that will never get to live their dreams because they’re lost,” he says. “No one speaks for them.”

To me, my suicide attempts were ancillary to coping with the bipolar disorder. Also, one of the reasons I went out and became a public spokesman was mainly relevant to the homeless. I had blown up my whole world three different times, two of them real good. I broke my back in the first one and ended up in a coma three days the third time. None of them was because I wanted to die. It was because I wanted the pain to end. And I couldn’t think of any other way to stop the pain of depression.

I came from a family of bipolars. At one time, we had five living generations, so it wasn’t a surprise. We didn’t know what was going on, but we knew something was going on and could recognize it when it manifested itself. I was diagnosed when I was 12, and they started me on meds when I was 19. My first attempt was on my 22nd birthday, when I broke my back. However, I have been successful. I have 12 years’ worth of college. I worked 30 years as a professional union stagehand in theatre, but three different times because of manic episodes I literally destroyed my world. I ended up homeless in Honolulu and was put in a shelter. At that time, they had me on 11 different meds, including a gram and a half of Seroquel a day. I was a vegetable. I was there a year and a half, but I knew I was going to get out. There are advantages to a superior classical liberal arts education that can’t be denied.

While I was in the shelter, I realized that three-quarters of the people there were completely lost souls and couldn’t find their way out, wouldn’t have options, wouldn’t know how to exercise them, wouldn’t know how to get a meeting or what to say if they got a meeting. I ended up working with a SAMHSA grant the state department of health got, the Mental Health Transformation State Incentive Grant, and they had a speakers’ bureau they wanted to teach. Also, I got to live my dream, and I was never going to get to do it again. I was blackballed out of the theater. The reason stigma doesn’t bother me is because of that. I got to do my dream. So I’m fighting for those people in shelters that will never get to live their dreams because they’re lost. No one speaks for them.

I’ve spent the last five years working with the legislature. In 2010, I got selected as one of 14 co-authors to write a white paper on the Affordable Care Act and its impact on the employment of persons with disabilities. It was used as a reference for Congress, and I kind of made a Faustian bargain: I will absorb as much of this as you can put in me, and in exchange, I will spend the next four years educating my state legislature on the ACA. I’ve actually read the entire law and the supplemental rules and regulations.

You read the entire ACA?

I had to. It’s 1,700 pages, with 700 more pages of rules and regulations. It’s like reading “War and Peace” twice. Except in really, really, really bad bureaucratese instead of excellent prose.

Since then, I have been working developing peer-to-peer programs in Hawaii. We are creating a six-faceted, peer-to-peer program wrapped around and including Hawaii’s tremendous homeless problem, around the lack of affordable housing. The effort has become kind of a success. The governor included $2 million in the executive budget for it, and it will leverage $18 million in federal money for salaries for the peers.

I’m completely immersed in this. This is the crucial legislative session. The ACA started in January, and we are doing this so we can get the peers out there working to get the homeless off the streets and hook them into our health exchange, which we call the Hawaii Health Connector. It will include a forensic certified peer specialist program, our Housing First program for the most vulnerable of our homeless population, something called “grand aides.” It’s where you take _ in Hawaii, you would call it an “auntie” _ that lives in one of the Hawaii Public Housing Authority projects, someone everyone respects. There’s a triage program with a list of 30 questions, connected by videoconference with a federally qualified health center, and it reduces emergency department visits by 70 percent and same-day urgent care visits by 50 percent. We’ve got a section called community health workers. Then there is an entire section based around the generic patient navigators. This is paraprofessional medical workforce development. It will take people who’ve gone far enough into recovery where they can contemplate something like an actual career and transition them back into the workforce at whatever level they’re capable of. All these programs fall under the patient navigator provision of the Health Homes section of the Patient Centered Medical Homes.

The target population in Hawaii is Medicaid patients with two or more chronic medical conditions. In Hawaii, Medicaid is the single largest line item on the budget. Ninety percent of the Medicaid dollars are spent by 14 percent of the Medicaid population, and two-thirds of that 14 percent are behavioral health patients. The government is willing to double down to get them to whatever level they are capable of so they can drastically reduce Medicaid expenditures. Then the state can take that money and invest in affordable low-income housing.That can be used to help house the non- Medicaid homeless, as well as invest in affordable workforce housing.

It’s cheaper to treat us than street us.

Did you come up with that?

The line? Yeah, and the people from Housing First have been here for the last week, and they’re the ones who invented it in New York. We want to couple that with a franchise of Howie the Harp in New York that focused on wrap-around services for the mentally ill. Too many of us die, you know. The greatest medical disparity in America is the fact that the seriously mentally ill die 25 years before the average median age for the general population. If you look at someone like me, it would just be the waste of potential for me to die at 55. The suicide attempts were absolutely real. Certainly breaking your back qualifies. Ending up in a coma qualifies. The others were serious but ineffectual.

That’s what I’m working on, to show that these are lives that don’t need to be lost. There’s a complete shortage of care for the mentally ill. Most of the problem, I think, is we don’t have a lobby. We’re not cute, we’re not “Jerry’s kids,” we’re not puppies. We are the shopping cart ladies. They just want us to not be there. However when someone capable and articulate can come up before the legislature or Congress and show them this is a waste and prove to them that it can cost up to nine times more to not provide programs than to do it, they start to listen. The programs cost $6,000 to $12,000 a year. Each night in the hospital costs $1,200. A year in prison costs $40,000.

When I talked with the chair of the finance committee, I was blessed with witnessing a light bulb moment. You know, when you can see the light bulb go off above his head? He says, “Oh.” He brings his staff in and says, “Tell them everything you just told me.” That makes it incredibly worthwhile. When all six peer programs are fully ramped up, I think we could get up to 3,600 half-time Ticket to Work jobs for the disabled. This is going to save lives and change lives. The patient navigator provision says we can get a 9-to-1 federal match on the peer salaries, on the condition that they stay for two years with the employer as a navigator. If it’s a success, they transition into entry-level career-ladder jobs, freeing up their slots for a new generation, who they taught.

The thing about peer programs is that the consumers have to fix themselves. The thing they need is is a guide to show them that it’s possible and how the guide did it themselves. That’s what I’m doing.

When will all of this start?

The first of the six programs, the health exchange, that started the first of last October. The Housing First pilot program starts the first of April. We’re still writing for the other four arms of it. But the Center for Medicare and Medicaid Studies is going to get 53 Health Homes proposals from the states and territories, and they said they’re accepting everything and freezing them for three years while they study them, and then they will promulgate the best ideas. The Housing First is for life. As long as there are no lease violations, they will stay in the apartment. Even if there are lease violations, we’ll find them a different apartment.

That’s my brief speech, because they don’t let me talk much more than that in hearings.

How did you get out of the shelter?

I was rescued by a psychiatrist. The last year I was in the shelter, I was in inpatient six different times. The last time I was in the hospital, a psychiatrist came in the second morning at 6 a.m. He said, “Get your stuff and come with me.” He just walked out of the room. I basically thought I was being thrown out of the hospital. He was in the hall, and he said, “Come along,” and we walked right past the charge nurse, without doing any paperwork. He led me downstairs. He put me in a really nice green Jaguar, and we drove over the mountains into town to this building. Then he looked at me, and he said, “You
live here now.” He runs three different multi-person apartments for his patients that he thinks he can actually help. His name is Dr. Denis Mee-Lee, and he saved my life. He’s an angel. He let me just deal with my issues. I spent four and a half years virtually locked in my room. That’s not true, there were others in the building, but I healed.

Then I got the worst form of vertigo there is, called vestibular neurontis. It’s a virus, and I had to go to the hospital. I had to lie on my left side for 11 days, and I could neither read or watch TV because I would become nauseous. It was the most boring time I have ever experienced. Somewhere in there, I had an epiphany. I could no longer do nothing.

I had not had case management, and the only reason I still have it at all is if I go into crisis. I go into crisis about once every two years. I asked the state if I could borrow a case manager. They gave me their most senior one, about to retire. We had two hour-and-a-half-long lunches. He referred me to the local NAMI executive director, and I worked as her executive assistant for six months. She taught me how the legislature works. I transferred to United Self-help Hawaii’’s consumer-run organization, and I worked as executive assistant for the executive director there. He said that my job was to create a sustainable state-wide consumer network and to coordinate annual consumer conferences. Since I was from the theater, I could do it in my sleep. I did my first conference, and that’s where I met the people from the SAMHSA Mental Health Transformation State Incentive Grant.

But the executive director is too crazy for me, and I ended up helping to organize the second consumer organization in Hawaii, the Community Alliance for Mental Health. I’m the vice president and legislative advocate. We have a woman who actually works for an insurance company that has the community service contract. She’s also a consumer. I asked her if she would be the president, because her feet are more on the ground and she could keep an eye on me. We’ve been on our own feet for a year and a half.

The story you told about being rescued is striking. The apartment you stayed in, was it free for patients?

No, he charges rent. I was paying $350 rent. In Honolulu, a studio is $1,200. He was taking losses for his patients. It’s a question of him picking people he thinks he can actually save. He’s been my doctor for 14 years. He’s an angel. There are only four doctors on Oahu who are still taking Medicaid patients. One of the hardest things to do now is find doctors who take Medicaid patients. There’s an absolute shortage of specialists, and a lot of them are choosing not to. I can’t say too much about Dr. Mee-Lee. He’s a member of the Seventh-day Adventists. He doesn’t force people to remain clean and sober, but he stresses it. He tries to change your entire lifestyle. I haven’t gone that far for basically theological differences, but he takes a holistic approach to healing.

Did you ever ask him what he saw in you?

He is my psychiatrist, and I keep him abreast of all I’ve been doing, including being sent to Washington. He believed in me when nobody else did. It took four years to sell this patient navigator program to the legislature. The senator with the human services committee, she saw it, and virtually anything with these programs has to go through human services, and she has been my ally. Then I convinced the governor’s homeless coordinator, who started to talk to me because he was in the same hearings I testified in. Then the head of Hawaii Public Housing Authority started to talk to me. Slowly, one by one, I turned people around to it. The chair of the senate health committee believes in me but doesn’t think I’ll get 10 percent of what we’re shooting for. Whereas the head of human services believes you don’t get anything you don’t fight for.

You mentioned that you still have crises. How do you prepare for it?

I’m completely open. I made myself a public figure. I talk to the press. I’ve been on the front page of the paper a number of times. I’ve been completely open on the legislature, which broadcasts on community service TV. This all has to do with, somewhere when I was having the epiphany in the hospital, I realized that my life as far as what I wanted to do was over. I got to make movies. I got to work the Olympics. I got paid to do the World Series. When I was 30, I was making two grand a week. I’m never going to do that again.

The only possibility was to have a career in academia, where crazy is acceptable, or working with the government, who already knew who I was. So I’m public. I’m 57, and I’ve had 28 inpatients. Two-to-one have been mania over depression. Depression can last, god help me, months. But the mania, I’ve learned the symptoms, I’ve survived. And the doctor believes in me, the hospital believes in me. And we have a rule: If I go three nights of five hours or less sleep, I report into the doctor’s office. If I go three nights with three hours of sleep or less, I go to the hospital and basically self-admit. And so it’s a living process.

What are some of the striking responses you get from people out there, beyond your support network?

Well, my mother’s an English professor, and I was raised in the classics. I believe in hubris. I don’t believe in destiny or preordination, but I look at them, and it’s really hard for people to argue with the success I’m getting, so I really don’t care. I’m out there, and it’s working, and the government is supporting me. These are smart people, the elected representatives of the population.

The public has to understand, again, that it’s cheaper to treat us than to leave us on the street. We’re a protected class. They have to pay for us, whether through the criminal justice system or the emergency room. They’re going to pay for us, so it’s better to do it efficiently. They also have to see that.

There’s a concept in Hawaii I’ve never seen anyplace else. It’s called Ohana. It’s not just the people who love you, but the people who love the people who love you. If my best friend’s sister is in the hospital in South Carolina, even if I don’t know her, she affects me because she affects my best friend. We also have the concept of hanai family, the ones who are not your blood but still your family. Under the concept of Ohana, one of every eight families is impacted by mental health. We’re all trapped on this island, and Ohana thinks of the island as a canoe. This goes back to the Polynesian expansion. We have no place to go. We’re here and surrounded by sharks. We have to take care of each other, because there’s no one else to do it. You take care of your Ohana, because that’s what people do.

What does your family think, if they’re still around?

My family is on the mainland. My mother is one of the five generations of bipolars I spoke of. I was diagnosed because her first inpatient stay was when I was 12, and she and my father got divorced because he couldn’t keep his zipper up. Part of her process was, her doctor wanted to do family therapy. He kept looking at me, and at the end of the second family therapy session, he looked at me and said, “And you’re one, too.”

And she supports it. My father’s dead. My sister is also a fellow traveler. She has four children, and one of her children for sure is, and another one maybe is, too. My maternal grandmother was unipolar depressive, and god help me, I would shoot myself if I was that.

The only bad in the family does not have to do with mental illness; it has to do with politics. Originally, we’re from Texas. We moved to Berkeley in the mid-60s so my father could go to seminary. I ended up being a junior high and high school kid in Berkeley in the midst of the revolution. We were under martial law for three years. I grew up in the riots. The only difference with the rest of the family is all political and theological. My family is my mother and my sister and a couple of residual best friends from growing up.

Did they know you had ended up in a shelter?

As I said, I blew up my world three different times. For my mother and sister, it was the point where you can’t fix people, they have to fix themselves, and a consumer can’t do it until they are ready. I had gotten to the point where I was destructive to my family unit. So I ended up on my own.

I had gotten my disability settlement. It took three years to get my Social Security disability. They had given me 24 grand in cash. I was old enough to realize the potential for danger, and I wanted to be healthy after the leaving the theater. I was going to go back to school. I knew if I kept that money, it would be gone. So I had $24,000, and my mom had perfect credit, and we bought a house together so the money would not be wasted. I went back to school, and I was three classes short of my master’s in history when I had the third suicide attempt and ended up in a coma. That did possibly more damage to my mother than to me. We had to separate. So we sold the house, and I wound up in Waikiki in 1999 with about $25,000, and I went through that in six months.

I had no place, no grounding, and again it was a continuation of the third destruction. I was completely mad by the time I ended up broke. The hospital placed me in the shelter after I was no longer in need of acute care. They had me so medicated I was sleeping 12 hours, non-functional six hours and barely coherent six hours a day. But again, I knew inside me that I was going to get through it, and once again, there’s nothing like a classical liberal arts education. I didn’t know what to do with myself, but knew I wasn’t done.

And they’re unbelievably proud that it actually is working. It’s really nice. The government will let me stop off on the way home on the way back from Washington, so I can stop in California on my way back and visit. Also, since I have to have unlimited long distance to talk to the East Coast, sometimes we just visit over crazy news items. Recently, I talked with my mother on the phone a lot about Chris Christie. It tickles me to death watching the Republican Party self-destruct.

What else would you like to do?

Again, I believe in hubris, and I’m afraid I’m going to wake up and see it was a dream. It has to go through. The governor’s homeless coordinator wants me to be the coordinator for the six peer programs. That’s an honor, and I certainly can use some money, but I don’t want to use the last years of my working life as a bureaucrat, so I have to see what it entails. They’re giving it to me because it is my vision and my dream, and I want to see it on its feet.

I’ve been healthy and grounded a number of years now, and I have been very lacking in joy. I want some joy. So, between making the vision come to fruition and balancing that up with bringing some joy back into my life. I have an idea. There’s a glimmer out there. I might have met someone. But that’s brand-new, and I don’t know. Balancing bringing to fruition and bringing happiness to myself is what I want and what I need.

Your work is far broader than suicide attempt survivors, but what, if anything, would you like to see changed on that issue?

I would like to see mental health treated with true parity and regarded as an illness and not as an aberration. I don’t think anybody can think any patient, anybody suffering from it, is doing anything wrong. It’s an individual road for each person. But yes, the topic needs to spread.

I have to remember, and the public has to understand, that stigma is still real. It’s going to affect you if you come out. It’s not like coming out of the closet as gay. Being gay doesn’t mean you can’t do your job. No corporation is going to hire someone acknowledged as mentally ill. They will believe that you’ll miss work deadlines. They’re not going to trust us. As I said, the only place I thought I could work is academia or government. Lawyers aren’t going to come out. Physicians, certainly, will not. Most elementary and high school teachers would not be able to. Reporters, well, Hunter S. Thomson got away with it. I can’t judge, but I don’t think there’s going to be many people that are in the emotional position where they’re going to be able to. I wouldn’t have done it except for the fact that I got to do my dream. That, and the fact that I got to sit in the shelter and live with people who would never find a way out. I’m doing it for them. Somebody has to.

How will they get out?

Everybody isn’t going to get, quote-unquote, “well.” But our goal is to have everyone achieve the optimum life they’re capable of. Some will never get out. Some, perhaps, will only make it to independent living. Some will never get past going to their clubhouses. Some will get jobs, maybe full-time, maybe not. Some might be able to go back to school and do even better. You play the hand you’re dealt. We just want them to get a fair seat at the table.

Who else are you?

I’m a stagehand. I’m a historian. I grew up on a working ranch, so the little boy in me is a cowboy. I consider myself a rational anarchist and some level of a socialist. I was raised in Berkeley. I’m a hippie, a well-educated hippie. I say I have Texas values and hippie ethics. Sometimes I say it’s the other way around.

Anything else you’d like to add?

I’m glad I’m not dead. I still can envision it, unfortunately, happening again. I made a pledge I’d never do it until my mother was dead. I’m not going to have children, I decided a long time ago. I wouldn’t want to pass the depression on to anyone, and I think that’s tragic, and I hope the NIH and NIMH will be able to someday find a way to actually do gene therapy and get this out of us. Some days, the black funk comes over you, and it’s terrifying. But I’m not a clinician, I don’t have a master’s in public health, I don’t know how to do anything about it. All I have is the power of persuasion, and I’m trying to do the best I can with that.