Dave Wise
is a suicide attempt survivor."I survived a suicide attempt."
Dave Wise is a mental health advocate. He was33 when I interviewed him in St. Louis, MO on September 8, 2015.
I grew up in Wisconsin, and I was born in Guatemala, in Guatemala City. I was adopted as a baby. I blog about mental health advocacy, specifically sharing people’s recovery stories. I talk about suicide prevention resources on my website, and combating stigma surrounding all these issues.
I grew up in a conservative Christian home. My father is a minister, and those experiences lead, I think, somewhat to my mental health breakdown. I don’t know what different people call their stories. I definitely think I was born with a genetic pre-disposition to a mental illness. I mean, from what we’ve learned about my biological family, my biological mother was in and out of psychiatric hospitals in Guatemala her whole life. Some of the biological siblings, of those my parents who adopted me have been able to locate, have severe and persistent mental illness in their lives, as well.
I think the over-arching religious narrative, and the fear surrounding religion, really played a role in my mental illness manifesting in the way it did, and to the severity that it did in college. The first time that I remember feeling thoughts of suicide, or suicidal ideation, I was actually in Guatemala. It was a college trip when I was 21 [years old].
We were at Tikal, which is Mayan ruins in Guatemala, and we were visiting one of the temples where George Lucas shot part of the Star Warsfilms. I remember that we had climbed up to the top of this temple, and for some reason, or, for no reason that I can really recall, I felt like I was supposed to just walk off the edge. I didn’t understand it. I didn’t know what was going on. And then, over the next six to nine months, leading into my senior year of college, I became more irritable, angry, sad, anxious, and just a lot of common mental health symptoms associated with depression.
Now that I’ve been diagnosed with bipolar disorder, I think some manic symptoms as well were there. I just didn’t understand it. I had never known anyone with a mental illness. I didn’t really learn about it in high school, and our family knew nothing about psychology, or counseling, or therapy, or psychiatric medications, or anything. I just thought that that’s what people experience. That was what was going on in my head. I thought, “Oh, everyone feels that way,” and, “It’s perfectly normal to want to kill yourself.”
Then, in November of 2004, my senior year in college, I was in a significant serious relationship that ended kind of abruptly and unexpectedly for me. Then all of these things that had been building up, probably for most of my life, just came out, violently, towards myself.
I remember, in November of 2004, trying to commit suicide for the first time, by a Tylenol overdose. For whatever reason, I ended up telling a friend who called my parents, and they came and found me and got me to a hospital. I don’t really remember a lot. It was a local hospital in a rural town in Illinois where my parents lived. And then, the next day by ambulance, they took me to a major trauma center in St. Louis.
I was in ICU for a few days, and they thought for sure that I would have liver damage, but I didn’t. I met with a psychiatrist resident there, and they evaluated me. Instead of putting me in the psych unit, they thought it would be better for me [to be] in intensive outpatient therapy and seeing a psychiatrist privately. That started the road for me to DBT therapy.
For people who are not familiar with that, that stands for Dialectical Behavioral Therapy, which is often used for people with a diagnosis of borderline personality disorder, but it can be used for other things, as well. I saw a psychologist probably at least once a week for that first year, if not multiple times per week. Back then the laws were different, so our insurance benefits ran out really quick. You only had so many visits you could use for mental health therapy. My parents had incredibly high medical bills for me that year because the insurance capped what they would cover; they didn’t want to pay.
This was a major private issue for my insurance company, and I was still on my parents’ plan because I was a college student at that time. It was really hard. I was seeing this psychiatrist, and back then they had me diagnosed with a different illness, so I wasn’t really medicated very well, except with a lot of anti-anxiety drugs. I quickly became addicted to those, due to no fault of my own.
It was just taking a little bit too much here and there. I wasn’t even managing my own medications back then. My family was giving them to me just when they thought I needed it. So I got hooked, and it was hard. I call 2005 my ‘lost year’ because I don’t really remember a lot of it. I lost a lot of it to Klonopin, a lot of it to suicide attempts, a lot of it to depression, and just a lot of different things. I didn’t function very well.
That same year, I also got kicked out of college, in the last semester of my senior year, for having a mental illness. They wanted the psychiatrist to write some sort of letter saying I would never hurt myself on campus so that my family would never sue them.Of course the psychiatrist wouldn’t do that, so they involuntary dismissed me, from a religious college, for smoking a cigarette on campus and using profanity, which was the official reason.
The real reason was the mental health stuff. That year, I lost my community and a lot of my friends. Luckily, I have a really good life-long friendship with a guy named Jim, who was a psychology professor at that college. He didn’t really know me because I had never had him as a professor, but he heard about my story and drove about a half hour out of his way once per week just to come have coffee with me. We would just hang out. We would talk about Wendell Berry—he is a poet, and he writes essays, and we would talk about his books. And Thomas Merton—he is a Christian monk and mystic who writes a lot on contemplation, and living-in-the-moment. We would talk about that stuff, and drink coffee, and had a friendship. He really advocated for me to get back into college that next year. Between that, and some other advocates, I was able to finish college eventually at the end of the fall semester in 2005, when I was supposed to graduate in the spring of 2005. He really went to bat for me and helped.
From about 2006 through 2012, it was a string of different jobs that I had difficulties keeping because of my mental illness, the stress, the hours. I would jump from job to job just because they offered health insurance and they were hiring quickly.
Back then, they didn’t have those laws; if I had a gap, or if I went for a long period of time without insurance, another company wouldn’t cover me because of a “pre-existing mental health condition.” This was before the Affordable Care Act, and the important work that thatlaw has done.
My college degree in media promotions and communications was never used. It was just a string of dead-end, part-time jobs—or full-time jobs that didn’t pay well that had health insurance so I could keep getting medicine and see a therapist.
In 2012, I was finishing up one of those full-time jobs, and the stress was just so much that I felt like I couldn’t handle it. I drove myself to an ER at a hospital and checked myself into the psych unit voluntarily. That year, and in the next year, 2013, I started a lot of ECT treatment for bipolar disorder. My depression at that point had become drug-resistant, as the doctors would say. Normal medications that I was on—a lot of mood-stabilizers, anti-depressants, anti-anxiety—just didn’t work. I had seen a Doctor Oz show, ironically enough, about ECT. I asked my doctor, who said, “Well, we could give that a try. We haven’t tried that yet.”
He thought there was a lot of research for it. Medicine doesn’t really understand how ECT works, exactly. It’s very effective and there’s a lot of data to show that it works quicker, and lasts longer, than a lot of the medications that they have these days. It’s been around for a long time and is deemed very safe.
For people who don’t know what ECT is, it’s electro-convulsion therapy, where they put a small stimulant current through your brain via electrodes while you’re put under anesthesia so you don’t feel it. The amount of electricity is about equivalent to the battery of a cell phone nowadays; it’s not very much. It causes a seizure in your body. That seizure resets some sort of chemicals or wires in your brain. It’s done about three times a week for a couple of weeks, and then they kind of take you back. It really helps you sort of snap out of a depression very quickly, but it meant spending two to three weeks of inpatient at the hospital at a time. You lose a lot of your memory as a side effect. You’re under anesthesia so you have other side effects to deal with, as well, which led to my last suicide attempt.
It was late December of 2013. I was tired of doing the ECT. I was just tired of fighting this disease, or this illness, and dealing with the thoughts in my mind. It was often a lot of anxious thoughts, racing thoughts that would just… I couldn’t get any relief.
For the last several years, I would say 2010 until 2013, I would try to end my life. It wasn’t because I wanted to die. I just wanted my thoughts to stop. I just wanted some relief. The medicines weren’t working, the therapy wasn’t working. All these conventional means weren’t working.
The only relief I had was when I was asleep. And I thought, “Well, maybe if I could go to sleep forever and just not wake up, I would feel better.” I did some more intensive therapy. Through the spring until fall of 2014, I did an intensive group DBT therapy, in addition to individual therapy.
In May of 2014, I started a band called Recovery. We played indie rock, and post-rock, and instrumental music. There was something about creating something artistically that kind of helped keep me in a good space.
I started a part-time job that I liked at the time, and I was still receiving disability benefits. I had a lot of community mental health support, and friends and family support, but really, the big thing that saved me a lot was the music—writing and playingmusic. Music without words, to me, is really important. A lot of the time, people focus on the lyrics, and what is going on with the words, but for me, as a guitar player, I don’t write the words. I write the melodies and the hooks and the guitar riffs and the chords, and it was sharing that with other people.
I mean, we didn’t have a “right way.” We never even played the same song the same way most of the time. We were always doing the same chord progression, in the same key, but sometimes it was a five-minute song, and sometimes it was a ten-minute song. But it was a creative outlet for all of us that was therapeutic for me. That led into working a lot.
In November of 2014, I went back to work full-time, and went off the benefits for a while. I was doing really well, and then some things happened in my life—the way life does—and unfortunately, this summer, I’ve had to leave my full-time employment. I’m back on social security disability. I was trying to do something creative, something positive, because I learned that was helpful the last time around.
So I started my blog. It started out as just this idea that my story matters. The name of the blog is #DAVEWISEMATTERS. I had to tell myself that, preach it to myself for many years, that my story matters and it’s important, so that I would stay alive.
Eventually, I started believing it. It sort of clicked. I started writing, and people were receptive to what I wrote. I was sharing my stories and experiences, and people wanted to hear more about it. I launched the website on July 26 of 2015 and people are engaging with it.
I’ve started sharing other people’s stories of recovery and how they’re doing on their mental health journeys. It’s still evolving. What I hope it becomes is a community, a digital community of stories, or a library, so to speak, full of community mental health resources, and people’s stories of how they’ve survived suicide attempts, depression, addiction, and different struggles.
I don’t think they all have to be asintense as mine, where they wanted to end their lives, and they don’t have to be somebody that struggled with drugs or alcohol addiction for years. You could be somebody that is struggling right now with this situation. Maybe you’ve lost a romantic relationship, or a family member died, or you’re struggling because you’re between careers right now. Your story matters just as much as mine. It’s just as important. That’s what I’m trying to use the website to do.
It’s letting people know that their stories matter, and in doing so, I hope that we can all work on destroying the stigma around mental illness. I remember this song that resonated with me from my senior year of college, when all this started, and it’s by a band called My Chemical Romance: “I’m not okay, trust me.” That was the chorus. I just really connected with that.
I think our society, and our culture, puts a lot of pressure on people to be okay all of the time. Smile, go to work, do your 9-5, come home, take care of your kids, cook a meal, disengage, self-medicate, use Netflix, or eating, or drinking, or whatever. I think that our culture wants us to self-medicate through entertainment, and through digital and social media.
But just getting by is good enough. That’s what I’m hopeful for. I guess what I want, and what I hope people start to believe, is that it’s okay to not be okay. It’s also okay to have a counter-narrative to our culture, one that isn’t based on a 9-5, and a pension, and a 401k, and vacations, and all of these things—that you can write and create your own meaning and purpose in life, and what that looks like for you can be very different from your neighbor, or from your mom and dad, or from your best friend, or even your spouse.
What’s purposeful and meaningful to you, as long as it’s something positive that doesn’t hurt or judge other people, can be a really great and powerful thing. I’m trying to find meaning and purpose now with an identity of one that doesn’t go to a place to work on Monday through Friday, eight hours a day, but somebody who works at coffee shops, and in my house, on the computer or on my phone, writing and sharing stories, and talking to people about things that I think are important, and things that I think matter. Things like suicide prevention, and mental health, and advocacy, and more laws, like the parity law.
The parity law says that mental health should be covered the same as physical health conditions by insurance companies, and that people who are registered to vote are active in the process, so that other people know that corporations aren’t the only thing that matter.
People matter, their stories matter, but you can’t be a full, complete, and healthy person and have wellness without mental health. I don’t really care at this point if it’s me sharing that, or if it’s a national mental health organization, or another person on Twitter sharing that message. Even if it’s my idea, and somebody else runs with it, and it takes off with them, that’s great. I just want the message to get out there that people’s stories are important, and that loss of life to suicide is preventable by making community mental health resources more accessible, more affordable, and by something as simple as taking five minutes to listen to a friend, or a neighbor over coffee or on a walk in the park, being available sometimes in the middle of the night if somebody texts you and says “I need to talk.”
If you aren’t equipped or trained to do it, then educating yourself on local and national resources like the National Suicide Prevention Lifeline, 800-273-TALK, who are licensed, trained professionals that can help, or knowing that you can call 911 if somebody is in crisis.
If they’re a friend or family, stay with them. There’s nothing more scary or difficult than being in an ER, on the psych unit, by yourself. From my own experiences, doctors and nurses kind of look at you funny, and they don’t treat you the same as if you were there for a heart attack, or a diabetic-related illness. If you’re there for psych, some might see you as a problem, and there’s security around you, you’re not allowed to make phone calls in the same way, nor have as many visitors, you have to wear paper scrubs, and all these things that other people don’t have to do.
I think that what people can do is just be a friend. If you know how to be a friend to any of your friends, you can do the same thing with a mental health crisis. It’s like sitting and listening; try to be as non-judgmental as possible, and try not to offer advice. But, you could share from your experience, or maybe say something like, “This is what worked for me when I was struggling,” or, “When I felt depressed, this is what helped me,” or, “When my boyfriend/girlfriend broke up with me, this is how I dealt with it.”
I think that’s much more effective than saying, “You should do this,” or, “Maybe if you did this…“ Speak from your own experience. But mostly, be slow to speak and quick to listen. Be present. If you want to give any advice, encourage the person to be present in the moment, be non-judgmental in that moment with them.
I’m not naïve enough to think that an attempt will never happen again, but I feel like I have more of a support system than I ever did before, and, I’m more educated on the resources available to me. I have the love and support of my fiancée, and she is expecting our first child. I feel that also inspires me to work harder, because now my story doesn’t just matter for me, but for my fiancée and for our child, too.
I’m no good to this child as a parent if I’m dead, or if I’m in the psych unit all the time. He needs somebody who can go out and play baseball, or teach him how to play guitar, or take him to the park, and just love him every day. It’s hard to do that when I can’t love myself. I’m working actively on doing that every day. It’s helping me prepare for this baby. I’m reminding myself that when life gets tough, you can’t always control what happens with circumstances or problems, or even with something as simple as your brain chemistry changing throughout the seasons.
For me, the winter is a lot more difficult with my depression. It’s just recognizing those things and being aware of my triggers and what my vulnerabilities are, and planning ahead for those, and equipping myself with the right tools in case things start to become unmanageable.
One of the things I’m really focused on now is for when our child is old enough to start engaging in conversation, understanding others’ stories, and sharing my story regularly with my child, so that if he or she ever experiences symptoms of depression or feeling suicidal, it’s not taboo in our family, and he’ll know exactly where to go for help.
“Turn to Mom and Dad, first,” and then, if Mom or Dad are not home, they’ll know about national resources and community resources, and know that it’s more than okay to ask for help. They’ll know that Mom and Dad will be there with them in the ER if they ever have to go. We would help him or her get the medicines they need, or the therapy they need. Hopefully by then, people like myself and you, Des, and others, would be working towards more advocacy, so that there are more free resources so everyone could get therapy.
Maybe mental health medications will be more affordable and more available, and you won’t have to have private insurance. And it’s not being on hold with Medicaid for eight hours at a time, trying to get a medicine that you need every day. If you had cancer and if you needed chemotherapy treatment, the doctor would just do it. It would be done. It’s not the same if you need a mood stabilizer or a name-brand psych medication. There are prior authorizations or week-long waits at the pharmacy and the doctor, and then a letter that comes in the mail from the insurance company that says, “Yes,” or “No,” which results in another visit to the doctor. It just shouldn’t be that way.
Mental health matters just as much as your physical health. It’s all health. It’s all the same thing in my mind. I think suicide could greatly be reduced if we just had more access to healthcare in our country, and if people would just talk about it more.
Maybe if they could just share their story, and talk about their struggles, and get that emotional support and not be afraid that if they share their story, they might lose their job, or that their spouse or their significant other would leave them, or their family would shun them, or that their religious community would abandon them and ostracize them, or any of that.
Des: Do you know who Kelley Clink is?
Dave: No, I do not.
Des: Kelley Clink wrote a book about her brother dying, and she’s been writing a lot of things on blogs and stuff about how she’s going to talk with her kids about her attempt. I think that’s really interesting, and important for us to be doing, thinking more about when it’s appropriate, how to do it, and all that.
Dave: It’s interesting because I came from a very religious background; I would say it was fundamentalist Christian as a child. I learned all about the Bible, and the stories in the Bible as a kid. I was memorizing the Bible at age 3. My parents have a video where I was quoting the Bible, and I used the word “condemnation” as a 3-year-old, which now, I think that’s pretty messed up.
The good thing that I can take away from that is the way that they did it. I learned about the Bible through stories, through pictures from back in the 80s, and from all these things that kids can relate to, like games.
I think I would like to start talking to my kid about it as soon as he or she is able to talk, or at least, understand words—maybe even when they’re an infant—to share this story in a way that kids can understand, like with short stories, or pictures, or with a sad face and a happy face or a face with tears. Maybe act things out. Show them medication bottles that are child-proof, and say, “These aren’t something to be afraid of,” and, “These are not something that are off-limits if you need them,” and, “If you think you’ll need help someday, Mom and Dad will help you get medicine, or somebody to talk to other than us.”Because when they’re older, I won’t be the person that they want to talk to because I won’t be cool. I will let them know that I will help them get to somebody who can help them in a way that makes sense for them.
I think the key is a lot of repetition, with a lot of grace and love built in, and lot of no-judgment. Being non-judgmental in the storytelling and in answering their questions. If they ask a question that I think is inappropriate, or how they’re perceiving it, then I could redirect them in a positive way. I could say, “Well, it’s interesting that you view my story in this way, but this is how I felt as it was happening.”
I would also reflect back to them. That’s a social work technique that my fiancée taught me. She has taught me a lot. It’s just letting the child know that it’s perfectly normal to talk about suicide and mental health, just like it is to talk about ponies and baseball and ice cream. It’s all part of the same narrative of the human experience; there’s suffering just as much as there is love and patience and joy and everything else.
Des: Where is your family now, with all of this?
Dave: They struggled in the beginning, especially in 2004. A lot of very hurtful things were said. It was kind of seen as if it was my fault that all this happened. They took some classes through NAMI called Family-to-Family. That really helped them out with finding support for what they were going through, and with educating them. They have been my biggest support in the last five years. Not only emotionally, but, I think almost every time that I have been in the ER or the psych unit or, definitely, inpatient. With the exception of the few months when I lived in Chicago, they’ve been there. They’ve come to the ER every time. They visited me almost every day that I was in the psych unit. They paid out of their own pockets for a lot of the therapy that I can’t afford, and even for my medications.
Even when you’re on Medicare or Medicaid, it’s hard. You have to choose between that or buying your food for that day. I mean, just on disability income, trying to make it on less than $1,000 per month, and with paying rent and utilities and with getting to work and all that stuff, it’s just not feasible. I did apply for assistance, through state and federal agencies, but there is a waiting process for those, and it can take 30-60 days.
There’s a lot of phone calls, and a lot of advocating for yourself, but in the in-between time, you have to choose. It’s either medicine, food, rent, or going to the doctor. My parents have really stepped up financially and helped me with that until I’ve been able to be more independent with those things on my own. They’re probably not the first people I would call. I would call a crisis line or a close friend, but they will show up if I end up in a crisis situation, and they will be present. That’s the most they can do, but at least they’re doing that. That’s a lot more than they used to do. For them, they have the ability, financially, to help out with some of the medications and therapy appointments and stuff like copays, so that’s how they show their support, too.
Des: Where does the religion play into it for you now?
Dave: Unfortunately, now, for me, the religion piece is kind of non-existent.
Des: Like, for your family?
Dave: No, for me personally.
Des: Okay. Talk about your family dynamic, and then your own.
Dave: For my family dynamic, with the religion, they no longer view mental illness as a sin or as a spiritual problem. I definitely think, with my dad being a pastor, that they wouldn’t say that, if I died by suicide, I would go to hell. But I do think that they, from a religious perspective, put more emphasis on prayer and God’s miraculous ability to heal than my own ability to take care of myself. They are definitely pro-medicine, and pro-therapy. I think that spirituality can and definitely should play a role in one’s recovery process, but I think that sometimes they put more weight in a sovereign God than in my ability to take care of my own self.
I was involved in churches in St. Louis throughout my twenties, and time and time again, I experienced stigma in faith communities. I was allowed to volunteer, and I would volunteer at a church for years, and then when a job opened up, I would apply for something that I went to school for, or an administrative job, but I wouldn’t even be given an interview because I had been hospitalized a couple of years earlier or because I struggled with mental illness.
I found more and more misunderstandings and stigma in faith communities than anywhere else, which is unfortunate, because I think that faith communities, whether it be Christian, Muslim, Buddhist, Hindu, Jewish, or whatever, can play the biggest role in the recovery process for somebody than anywhere else. I feel like faith communities oftentimes stigmatize people because of bad theology.
There’s also lack of education. They don’t know what science says about mental health or mental illness. The last thing I’ve learned is apathy is disguised as business. The pastors are, and I quote, “too busy” to go to a NAMI education class, or hear your story, or spend time with people in their congregation with mental illness. I think they use that as an excuse because they’re apathetic or they don’t really care. What can somebody who is on social security, or disability, or who has schizophrenia, do to benefit the church, in their mind?
Whereas, with an entrepreneur, or a lawyer, or a professional athlete, or another church planter, they’ll save their time for those people to meet with them or hang out with them because they can benefit from their relationship with those people. Which is the exact opposite of what I saw Jesus doing in the Bible. He was hanging out with all the people who couldn’t benefit anybody. They were outcasts, and their stories didn’t matter to the cultural norms at the time.
I don’t really read the Bible much anymore, but I always go back to how it’s such a part of my upbringing. It’s hard to forget all that. In the Bible, in John, Chapter 9, Jesus’ followers ask him, after they see a man who was born blind at birth, ‘“Who sinned? Was it this man, or his parents, because he was born blind?’”
Jesus said, “Neither. He was born blind so that I could heal him, and so that God’s glory would be manifested.”
I go back to that story a lot. I think that’s how the church often views mental illness, like it’s a spiritual problem. When somebody gets divorced, or gets addicted to drugs, or there are moral failings, or they didn’t pray hard enough. They think, “If they didn’t do that, they must have been abused as a kid, to have such severe depression now,” or, “It’s their parents’ fault.”
Instead of looking for an opportunity to be an active agent in what they would say is “redemption,” which is what I would call “recovery,” they choose to judge and push people away, when I don’t think that the person they base their religion around, Jesus, would be doing that today. He would be hanging out at community mental health centers, visiting people in the psych unit, and healing people. Maybe it wouldn’t be in this miraculous way where he changes their brain chemistry, but healing people by just hanging out with them, listening to their stories, cracking jokes, buying them coffee, going for walks, everyday things that every person is capable of doing.
Des: Do you think that your experiences have affected your father’s ministry?
Dave: It has. I’ve noticed that in the last five years or so, my father, wholives in a really rural town in Illinois where there are no community mental health resources… He’ll have a person in his congregation who’s experiencing depression or something. Lately, he’s been asking me if it’s okay if he gives them my phone number or email address if they want to talk to somebody. He doesn’t really know what to say to them, but he figures that I do, or I could refer them to somebody who does. At least now he’s telling people about NAMI.
In addition to that, he’s started a food pantry in town, and he is the president of the board for the food pantry. While helping people get food isn’t the same as helping people get mental healthcare, it’s more outward-focused, and more social justice-oriented than his church used to be ten years ago when this all started. Back then, they were just self-contained and doing stuff for the people in their own church. Now, it’s community-based, and it’s not based on whether you go to their church. If you have a need, they try to meet it with the food pantry, and with a few other resources through the food pantry, like United Way. They’re more ecumenical. The type of church that I grew up in was very self-contained; they didn’t work well with other churches. It was like, “We can’t believe in the exact same thing as them.” But now they’re trying to work across denominations, all within the Christian religion, to help other people within their town. I think that is a big step forward.
Des: Your fiancée is a social worker. What is the dynamic, in terms of your mental health, between the two of you? Especially considering she’s your family now?
Dave: Yes, she is a medical social worker. Even in her practicum, in grad school, she never did anything mental health-related. She’s done case management, and medical social work-related stuff for people waiting for organ transplants who have to be evaluated by a social worker. She, herself, sees a therapist weekly and has also experienced depression in her lifetime, although it was not as severe and persistent as mine. She’s been on antidepressants at different points in her life.
She is really into this author Melody Beattie. Codependent No More and The Language of Letting Go are these books that Melody Beattie wrote. It’s this idea that self-care is the most important thing. She can’t be a good partner to me, or a good employee at her job, or a good daughter, or a good friend if she doesn’t take care of herself. To her, what that looks like is doing yoga weekly, exercising regularly, eating healthy, reading, doing word searches, creating art, watching TV shows on Netflix that are humorous. For me, it’s listening to music, looking at Instagram pictures of pug dogs, drinking some soda, listening to bands, hanging out with my friends, having these conversations about mental health and the philosophy of religion with close friends and with people I trust. Doing fun things.
Self-care has become the main thing for us, individually, in our relationship. Then we try to do that as a couple by doing fun things together. For the last two nights in a row, we watched two movies on Netflix. Two nights ago, we watched Men in Black II,where there is a pug who is a secret agent of the government who helps stop alien invasions. We do things like that, and then, we do things where we have in-depth discussions.
Last night I cried a lot; I was preparing for this, and I was just thinking about mistakes that were made in my life with family, and with churches, and how that affected me. She was supportive, and she listened. I’m taking care of her right now in her first trimester of pregnancy. She is having a very difficult pregnancy, so it’s a lot of running to the grocery store, weird food runs, going to the pharmacy when we have to call in more refills for her nausea medicine, and making sure she stays hydrated. A few times I had to take her to the ER because she got dehydrated and needed IV fluids from the nausea caused by the pregnancy.
It’s just telling her every day that it’s okay to be where you’re at, and if all you can do today is go to work, eat, drink, and sleep, and not throw up, that’s more than okay. You don’t have to be some superwoman all the time. That doesn’t mean that you’re not successful or productive, and you shouldn’t compare yourself to other women who you work with who are pregnant, or celebrities, or anybody else. You’re your own unique person, you have your own story. I just remind her that she is loved by me and loved by other people. I’m hoping that her support of me, and my support of her just overflows naturally to our child, and that it’s just a continuation of our story with this child when he or she is born in March.
Des: How do you feel about the resources available to you here?
Dave: St. Louis is actually the city that I’ve had the best experiences with for community mental health resources. I lived in Chicago in 2010 for almost a year, and it was very difficult getting to see a psychiatrist or a therapist, even through clinics. I really didn’t have any insurance. There were months and months of waiting lists.
Here, there are some really great organizations. I’m a member of one called Independence Center. They’re a clubhouse, so if you google “Clubhouse International,” you’ll find that the biggest clubhouse in the world is in New York City and they help people living with a mental illness.
Their main goal is to help people get back to working, whether it be in a part-time job, a full-time job, or gaining independence by having their own apartment. They really encourage job skills and independent living skills. They have case managers and social workers. They partner with psychiatrists in St. Louis through Washington University’s School of Medicine.
There is another great organization in town called Places for People that works with a similar population—people with a severe and persistent mental illness—but primarily with displaced persons or people who are homeless.
I know a guy who was homeless and living in an abandoned building, and now he is finishing his undergraduate degree in psychology and applying for PhD programs in medicine. He is married with a 3-year-old, he plays guitar and, you know, his story is definitely one that I think there are more of out there.
People don’t hear about it because of mainstream media, and others who don’t want to talk about that stuff. They want to talk about famous people who die from suicide, or people addicted to drugs who are famous who might have a mental illness, or people who shoot up public places, and then they can say, “Well, that person had a mental illness and that’s why they did this.” They don’t want to highlight the stories of kids going back to college, getting jobs, becoming psychologists and doctors and lawyers, who also have a severe mental illness.
There are local crisis resources, like BHR, who I’ve used plenty of times, in St. Louis. They’re a 24 hour, 365 days per year crisis line. You call in, and then they talk to you, and it’s either with social workers, or they have some sort of state license in mental health. If they need to, they come out and meet you wherever you’re at in the community to determine if they need to get you to a hospital or some other place of safety.
There is one last place called Provident, where my friend was a case manager for a long time, and they work in St. Louis County. For anyone, I think 19 or under, they get free psychotherapy counseling through them if they’re a St. Louis County resident. It’s ongoing. It’s not just a one-time thing. It’s weekly or bi-weekly therapy sessions, whatever they qualify for, just by the proximity of where they live. St. Louis County is really big in St. Louis.
I live in St. Louis, the city, and they also have a crisis line, and then they also do case management, helping people get connected with other resources. I think this area, the St. Louis metro area, has a lot. There is a NAMI chapter here in St. Louis with classes on mental health education for families and caregivers, and the AFSP, the American Foundation for Suicide Prevention of Eastern Missouriis here. I’m a board member on that. I do their social media.
There are a lot of smaller, grassroots things. I can’t even list all of them.
Even some churches are now starting counseling centers, and referring people out to community mental health agencies. There’s a pastor in town, a Southern Baptist pastor who has pretty big pull in that denomination, who has been meeting with me monthly now, a couple of times each month, to ask how his church can be more accommodating to people with a severe mental illness and how they could help—not to create a new ministry to help, but how they could work with community mental health agencies already here and doing a lot of work, that have funding, and just refer people to the different places. His church is a small church that is south of the city, but I would say that at least 10% of their regular attendees are all members of the Independence Center, where I am, meaning that you have to have an Axis I mental health diagnosis to qualify. Most all of them have Medicaid, or are on some type of disability. He’s asking really important questions, but he’s open to learning from people who aren’t pastors, and who aren’t church planters, and that don’t even believe the same things he does theologically. I don’t line up as conservatively as Southern Baptists, but I do follow Christianity. He’s open to learning from me, and from others. He did a tour of the Independence Center the other week, and just went to visit it and see what it was all about.
I think that there’s hope for mental health in the church, specifically in St. Louis, and there’s a lot of hope for mental health with community mental health organizations if the legislators give more funding and expand Medicaid. Unfortunately, Missouri is one of the states that didn’t choose to expand Medicaid, so they actually pay a penalty every year for not expanding. They would rather pay a penalty to the government for not having Medicaid expansion than expand Medicaid and give more resources—not just mental health, but health resources, to more people.
Des: Talk about advocating for yourself, in terms of your struggles, and then also about how to advocate for your community, and how other people can, as well.
Dave: I’ve learned that you have to be your own advocate, and you’re going to be your biggest advocate. You’re the most invested in your story and in the process. I was talking to my friend, a psychologist, who has been a community mental health consultant and psychologist for his whole career. He’s in his late fifties now. We were talking about how social workers and psychologists and psychiatrists, even if they’re on call, eventually get to go home from their jobs. They rotate being on call, and then they go home, even if they’re only home for 8 hours per day, and even if it’s hard to leave some of the work at work, they get to leave their job at their job at some point.
I don’t ever get to stop living with bipolar disorder. I don’t ever get to stop living with thoughts of suicide and depression. It’s an on-call, 24/7, 365 days a year job to live in recovery. For that, I have to be my own biggest advocate. People get burned out, they move on without you, they don’t care, people change careers, people clock out, but you have to be your own biggest advocate.
That starts by educating yourself and about the resources available—on legislation, on agencies like the ADA, the Americans with Disabilities Act and ada.gov, and the EEOC. EEOC.gov is the Equal Employment Opportunity Commission, and I’ve gone to the EEOC office and filed grievances in the past. I’ve contacted Medicaid and Medicare, and gone to the social security office myself many times and advocated for myself because my case manager isn’t always available. They have hundreds of people on their caseload, and they’re just one person. They just can’t do everything.
I’ve learned the ins and outs of the system. I’ve read every website you can on a government agency that has anything to do with mental health—every page, every link off their website. I’ve read stories in the news about different things. I’ve learned how to apply for disability. I actually applied for disability on my own, on the computer at my parents’ house. Back then, it was because they didn’t want a lawyer to take a cut of any money that I got, so they made me do it by myself. I’m glad they did because it taught me a valuable skill, which was that I have to learn how to be my own social worker, or my own case manager.
Other people will let you down. Other people are busy. Other people are not always available. Other people aren’t always as invested in your health, safety, and wellbeing as you are. Even if they’re your family and friends, and even if they care, they’re just not as invested. What I encourage other people to do is start by learning about federal programs, like social security, Medicare, Medicaid on the state level; learn about the ADA and the EEOC by going to websites, going to the library and reading books on it. If you don’t have access to a computer, talk to people at a community mental health agency, like NAMI or AFSP, or a clubhouse, if you have one in your community. It’s just learning. Research as much as you can, and educate yourself on all the different ins and outs of the legal aspects of everything. That can be your greatest ally but that can also hurt you a lot.
For example, when I went back to work full-time, I didn’t know I had to write Medicare a letter saying that I was refusing Medicare Part B. Since I didn’t do that, I lost access to Medicare Part B, and now I owe a lot of money if I ever want it back. Right now I’m uninsured until we get married, and then I’ll have private insurance again. It’s just a really confusing process. I think in worst case scenarios, and what possibly could happen, and try to research what all of those options could be ahead of time to prevent losing access to healthcare, losing a doctor, losing your time to file an appeal or a grievance with the EEOC. You have about 90 days from when an incident happens to do so.
Even if you have a pro-bono community mental health lawyer, he or she may have a hundred other people to represent, and may not have the time to answer all of your questions or be on the ball. You have to be your own biggest advocate, your own voice, but there’s also a lot of people out there that have done it who you could learn from, who are willing to share, if you’re willing to put in some time to research it.
Des: I want to know more about your family. How do you feel that affected you, not knowing about it?
Dave: My parents came to Guatemala when I was 3 or 4 days old, and they brought me back to the United States when I was three weeks old. At that time, or shortly before that, from my understanding, I had two older biological sisters who were adopted by an American couple together. My parents who adopted me learned about that couple through the adoption agency in Guatemala, but didn’t really correspond with them, and didn’t have anything to do with them until I had my mental health breakdown. They then reached out to them and said, “Do you know anything about the family?”
They said, “Well, actually, we do. One of our daughters is estranged from us. We think maybe she is homeless and has schizophrenia and is living in Chicago somewhere.”
According to her, our biological mother was in and out of psychiatric hospitals her whole life, and our biological grandfather was the one who was raising the siblings. Prior to all of that coming out, my parents who adopted me had no knowledge of any of that, and they never thought to ask those questions back then in 1982. They probably thought they would never need to.
Now, we’ve learned just a little bit, and that was pretty much all we knew. But I learned recently from my adopted parents that they didn’t inform me that there were at least two other older siblings. Then there were my two older sisters, but nobody knows anything about them. We don’t know if they were boys or girls, or if they were twins, or what happened to them. Nobody knows any information about them other than that these two older sisters told their parents who adopted them that they had two older siblings at some point, and then those people told my parents.
The reason that the two older sisters and I were put up for adoption was because our biological grandfather was severely disabled, and he couldn’t take care of us anymore. The mom was in a psychiatric hospital in Guatemala City—basically permanently. She would get out once in a while, and then she would become pregnant, give birth, and then go back into the hospital, and the grandfather would have this child, and then he couldn’t take care of us. They put us up for adoption, and then the two sisters went together. We don’t know what happened to the oldest two siblings. I went with Larry and Becky to Wisconsin.
Des: Do you feel like knowing, or finding out later, affected you in any way, in terms of your identity?
Dave: I don’t think so, negatively or positively. My identity… that’s hard. My fiancée thinks I have a lot of identity issues surrounding this adoption that I need to work through in therapy, probably for the rest of my life. A lot of the reason why, in the early days, they thought I might have had borderline personality disorder was from this fear of abandonment. My fiancée thinks the abandonment issues has a lot to do with the adoption thing. I definitely do think that I’m constantly afraid that people will leave me, whether it’s family, or significant relationships, and that might stem from being adopted.
Part of my story is that my parents were supposed to have gotten a different baby from Guatemala, but that infant died at birth. I was the next baby that they were offered for adoption, and they took me. A lot of times, when I’ve been very suicidal or upset, I’ll call my mom crying, saying, “You got the wrong baby. I was your second choice.”
Knowing now that there is this mental health history at play, I wonder, if they had known that about my biological mother, if they would have taken me. I don’t know. They would say they would have, and I hope they would have, but nobody knows. I’m glad I didn’t know until I was an adult. I wouldn’t have understood it then, and I didn’t grow up in a culture or an environment that was conducive to mental health education, or sympathetic to counseling or therapy of any kind.
Des: Is suicide still an option for you?
Dave: Right now, in this moment, no. But I will say, in June of this summer, it was a very real option. It got to the point where I called my mom and I had told myself, “If she doesn’t answer, or if she’s not helpful in this phone call, that’s it.” I had a plan. I had the way to carry it out, and I was ready. Either it was a miracle or fate, but she answered the phone, and it was one of those rare times when she was very helpful.
She didn’t just listen, but she offered some wisdom, she brought up things that had worked for me in the past, and she encouraged me to go to sleep. One of the things I’ve learned is that a lot of this happens at night, and if I can just kind of wear myself out mentally, I’ll pass out from exhaustion, and then the next day doesn’t seem quite as tough.
She knows now if she can just talk to me, even if she’s on the phone for an hour or an hour and a half with me until I start mumbling, or slurring my speech, not because I’m intoxicated or on drugs, but because I’m so sleepy, then she can get off the phone safely with me because then I’m going to pass out in bed, wake up the next day, and I’ll be safe, or doing a little bit better. I can regroup, and take care of myself better then with some sleep.
My buddy, who is a recovering alcoholic, he’s gone to many AA meetings, and he’s talked about this thing called HALT, which is if you’re Hungry, Angry, Lonely, or Tired, you’re less effective at coping and problem-solving. A lot of times, looking back now, when I’ve been in my most severe moments of crisis surrounding suicide, I was at least one of those, if not all of them. In that particular instance, I don’t think I ate dinner, and I was very lonely. My fiancée was working a 13-hour, so she wasn’t home. I was tired. I was angry at my former employer and some friends that I had felt slighted me. I just felt like, “I’m ready.”
What I’ve been saying lately is that was the last time that I felt really suicidal, but I didn’t attempt, I didn’t do anything. I just ended up going to sleep that night. That was it. The next day I felt better, and life went on, and I problem-solved with other people, and I called Independence Center to get some more community mental health support, and I worked through some things.
I feel like there may come a point in time where I’m just tired of being this guy who is an advocate for himself, living with mental illness, who is in recovery. I just want to be a normal guy or just sleep forever. I don’t know what I’ll do in that moment. I hope in those moments that I’ll remember to eat something, try not to be alone, try to minimize my anger, and try to get some rest, and reach out to other people, or mental health resources, or somebody to problem-solve when I’m incapable of problem-solving for myself.
Another thing that worries me is when we moved from Wisconsin down to this area, things at my dad’s former church job had gotten really out of control. It was a bad, unhealthy, abusive situation for our family. I always criticized my parents for not getting out when the going was good.
For a long time, it was like, when things were going well, that was when I wanted to [die from] suicide. I wanted to check out before things got bad again.
I hope I don’t ever think that way again because things are going really well right now. I’m expecting a child, Kelly and I are going to get married soon, this blog is taking off, people are listening. My basic needs are being met. I haven’t gone hungry yet. I have medicine. I have doctors who are switching medicines to name-brand ones so that they can give me samples, and drug cards, and they’re just really working with me.
I think I understand why I used to think that way. It’s because when you’re desperate, and things get really bad, you don’t want to experience that again. Why not check out when things are going good? Before it gets bad. I guess the faulty logic in that thinking is that things will get as bad as they were before. There’s no guarantee that things will get as desperate as they have in the past. I do think there are a lot of struggles. I do think there will be a lot of moments in time where I will think about suicide in the future.
I don’t know that I’ll ever do so with the exact same set of circumstances that I had before. I go back and forth on what I think about God and Jesus these days, especially in relation to mental health. But I think one thing is certain: there is a purpose. Whether that looks like Jesus in the Bible, or any world religion has it nailed down, I don’t know. The purpose: the reason I believe that there’s no medical explanation for why I’m alive today. I shouldn’t have a functioning liver at this point. It’s fine, other than me having high cholesterol and being overweight. I feel like I’ve been given not only a second chance, but hundreds of second chances.
Instead of tempting fate, or the universe one last time, I’m trying to be a good steward. That’s what the church always said. I’m trying to be a good steward of the resources. I’m trying to be a good steward of my time. I don’t have a lot of money that I can invest in different things to help people. I have a lot of time, and a lot of skills in social media and communications. I try to network for people with mental health, with professionals and consumers, and use the power of the story through social media to connect people to resources, but also to share powerful stories with people who could make a difference financially or legislatively. I’m trying to be a good steward of my time every day that I’m not working at a typical 9-5 job, but working towards macro change, as well as my own story, when I’m able to do that. I have to make that more of priority, or else there is going to be no macro change with me involved if I’m not doing the self-care stuff that Kelly and I talk about all the time. It’s a delicate balance.
Des: Do you think there’s anything else?
Dave: The only thing I think that I want to reiterate is just that everybody’s story is important. I used to get angry a lot at people who weren’t listening, or people who didn’t care as much about mental health, or who weren’t advocating for me enough, or at people who don’t think that mental illness is real. What I’ve realized is there’s nothing I can do to change people’s minds, or make them think differently.
At best, I might be able to persuade them a little bit. Instead of focusing all my energy on trying to change somebody, or get them to see things from my point of view, I’m trying to focus my energies now, when I’m frustrated or angry, on doing something positive or constructive, like sharing one more person’s story that day, or writing one more blog. Even if I don’t post it right then, I just want to get it out and save it for a different day. Or writing to one more politician and saying, “This is why mental healthcare is important, and why everybody needs access to it…”
For me, what I’ve been realizing is, as frustrating and as difficult as it is working within the system, whether it’s the legal system, or Medicare and Medicaid, or social security, that’s what we have right now. It’s not going to change unless we work within that system to change it. It’s learning all the ins and outs of all those systems, who to talk to, how to lobby, how to advocate, research, and encouraging others to join in on that.
The other night, my friends who own this bar called Heavy Anchor inside the city of St. Louis—which is a pretty popular bar—they needed some help tearing down some plaster behind a brick wall in their bar. They’re redoing it and repainting and everything, and they put out a call to action on Facebook that said, “Hey, come help us take down a wall! We’ll give you pizza and beer.” I said okay.
What started out as a call to action to help a friend became this metaphor for me, and it inspired this social media campaign that I’m going to launch in November. As I was sitting there trying to chip away plaster with bricks behind it, it was really difficult. I don’t do a lot of manual labor, and I’m not the strongest person. I don’t have a lot of experience doing that kind of thing, but it was really hard. I looked over at the guy to my left, and he was doing the same thing, chipping away a lot of big chunks, and he looks at me and he says, “Sometimes it’s hard, but don’t get frustrated.”
Then, I looked down, and there’s another person doing it. And then, after an hour, I looked back, and a lot of different parts of the wall were broken down, but it wasn’t done yet. It came to me that that’s kind of like working for mental health advocacy. Everybody has a role, and my role, being new to doing this, may not see as much fruit or progress as early on as somebody who has been working in mental healthcare advocacy and policy for 30 years. But that doesn’t mean that I don’t play an important role, or that I can’t have a significant role.
As I was chipping away, and those little pieces of plaster were flying, a big chunk fell out. I guess I never know when I might get an email from somebody who wants to hear my story, or wants to know what my ideas are, who could influence somebody else, or is a major influencer themselves, or a retweet by a politician or a celebrity that could get more people interested in mental health topics.
We all have roles to play. Sometimes it’s hard, but don’t get frustrated. The biggest thing that I took away from that night, helping at the bar, was that I wasn’t doing it alone. It was a community effort. I looked on Facebook just today, and there’s a picture where the whole wall has been taken down now. It’s all brick. Over two days, from a group of people doing what they could for as long as they could.
For me, it was just an hour and then I was tired and went home, but it got done. It may take 20 years or it may be this year that one million people register to vote who care about mental health. Maybe it will be another four years from now that somebody gets elected who is sympathetic to that. But everybody’s story is important in the greater community of stories.
You just have to remember that you’re not alone. Even if you’re physically alone in that moment, even if you feel that way in your head, you’re not alone in your work, and your story is important.
Thanks to Taylor Binnix for providing the transcription to Dave’s interview.