Talking with CW Tillman

Coming across CW Tillman a couple of years ago was a breakthrough. I had decided to stop keeping my own experience a secret and be open, but I was surprised to find no resources out there for people like myself. A researcher finally mentioned that an upcoming conference of the American Association of Suicidology would feature a full-membership session on attempt survivors for the very first time. Off I went to see. And in front of hundreds of buzzing suicide researchers, clinicians and crisis workers, CW calmly told his story. This was the spring of 2011.

After he spoke, “People came up and said, ‘I understand, I went through similar experiences,'” CW says. “I really felt like they were saying that for the first time to someone outside their circle. Because of the really hushed way that they said it. More off to the side.”

CW and I met again this year when he came to New York City to visit friends _ who turned out to live on the block next to mine. Here, he talks about his national debut as a public speaker, the absurdities he came across in the psychiatric ward and the career he’s built with American Sign Language interpreting from his experience being sneaky as a child in school.

Who are you? Please introduce yourself.

I’m CW Tillman. This is a tough one. So broad. I think I really identify with how we’ve talked about in the disability movement: “People first.” I’m everything else as a person, and then I have other challenges or disabilities or whatever way you want to describe the experience in my life. To that end, I’m also a suicide attempt survivor and I also have lived experience with bipolar, mainly on the depression side of the scale, which has been a challenge at times. And still people don’t understand that depression isn’t a “pull yourself up by the bootstraps,” not something you simply change by changing your environment. It’s not just situational, it’s much deeper than that.

But as a person, I’m a friend, a son, a father. I have an 11-year-old. I’m much older than I look, which has positives and negatives. Professionally, it’s sort of a negative because people think I’m a lot younger, so I feel they don’t give the same respect or … They don’t realize I have a lot more experience and things to contribute right at first. But everybody sort of wants to look young, so that’s the advantage. And I love playing the “Guess how old I am?” Sometimes it’s a 15-year difference. When I tell them, I always get the “No way.”

How did you get to be talking to me now about this?

Several years ago, I was asked by (former president) Michelle Linn-Gust to be part of a plenary session for the AAS conference, talking about experiences about being a suicide attempt survivor. It was immediately after that talk that I met you, and, as they say, the rest is history.

What was the experience you talked about?

It started out with my own experience in high school, where I was fighting depression. I lived in a very small town where things like that were not discussed. I didn’t know anything about depression or other types of mental illness. “Oh, that person’s a little different.” It’s something never talked about. I’d never really heard those terms before.

My sophomore year, I was really struggling. I couldn’t talk to anybody. I didn’t know who to talk to, what to do, and I ended up just wanting to end the pain I was experiencing. At that point, I had decided to jump from a four-story window in a classroom building, and while I was sitting there, another student came in. And was quite freaked out. He left, and a teacher came in and was able to talk me down. After that, I went to the counseling office. There was only one counselor at my high school, primarily an academic counselor, who talked to me for 30 minutes. Looking back, I don’t think there was anything really substantive in that conversation, just general care and concern. “Please don’t do that again.” The bell rang for lunch, and she said, “You probably should go to lunch now.”

I went to lunch and went through the rest of the day. My last-period teacher came up and gave me a hug and said, “If you ever need to talk, let me know.” I walked home. Both my parents were home, and they sat down for an hour and talked to me. Again, “We don’t want anything to happen to you.” We never discussed it again. No follow-up. Out of sight, out of mind, maybe.

Later, I was dating somebody who seemed to be doing OK, a good student involved in student activities and had what appeared to be a great relationship with her family and other people. There were no signs of things being wrong. But we grew up together, and she moved to Ohio and we started dating again when she was in Ohio and I was in Missouri, and I drove back and forth. We talked on the phone a lot. One day, there was something different about the tone and how it was said, and I knew something was wrong. She denied it, didn’t want to discuss it any further. I changed my work schedule and drove out and surprised her. And even when I was there, she said, “Everything’s fine.” It appeared to be fine. I went home, and a few more weeks before I could visit, the phone woke me up around 2 in the morning. Her twin brother was on the phone. The only thing he said was, “She’s gone.” I found out later that she committed suicide at home and called in sick after her brother had gone to work, so he wouldn’t know she wasn’t there. Other friends assumed she was at home sick.

And it was a few years after that that my depression was getting a lot worse, and I tried to get some help once I was having severe anxiety issues. At the time, I was working with 911. And so I called for an ambulance, and when the paramedics got there and were talking to me about what was going on, they said, “If we take you anywhere, it could ruin your job or career.” Like instant stigma at that point. I think they meant well, but they just didn’t understand the seriousness of what was going on.

I talked to my general practitioner, who prescribed an anxiety medication. At that point, the side effects were overwhelming. I wasn’t able to deal with it. I had strong sensitivity to light, severe claustrophobia. Even in a small room this size with two people, I would be freaking out. I would need to be in a larger space. So I stopped taking the medication on my own. I figured that’s what causing it. Eventually I went back to the doctor, explained the symptoms. I didn’t say I quit. He said, “Stop taking it, let the symptoms clear up, then start taking it again.” In the back of my mind, I was thinking, “OK, that probably sounds great to you, but anyway” … I had no intention of ever restarting.

Things were getting worse at that point, and I ended up overdosing on that medication. And
pretty much after that, I decided that’s probably not what I really wanted to do. I called my
pastor, who called for an ambulance, and it was a different set of paramedics this time. But they took really good care of me. Their actions definitely saved me from very serious problems and most likely saved my life.

So, coming back to your question, it’s based on my lived experiences that I’ve talked somewhat openly to let other people know other supports and resources are out there that weren’t available to me at the time. Because if we can help one person, it’s worth all of
our efforts.

How did you get invited to speak at the conference?

There seems to be no end to the coincidences in my life. Like you living a block from my friends in Manhattan. I lived in New Mexico before the DC area. I was in a hospital there, still grappling with the loss of my girlfriend, so I was referred to a survivors of suicide group. I started going. And if I’m not mistaken, I believe it’s the longest-running SOS group in the U.S., like 30 years. I want to say that Michelle had just written her first book, and she lived in Albuquerque too. She spoke at one of the meetings. We met there, then reconnected through Facebook. And I had made a post about suicide no longer being a silent killer, on Facebook, and I talked a little bit about my experiences. I wanted people to know support was out there, and it’s not something we can keep quiet about any longer. And she had saw that. I met her in 2000, roughly. And then the conference was in 2011, so 10-year stretch there.

How did you make the decision to speak openly, and how did you feel before speaking?

I was quietly honored that she asked me. I had been involved with various organizations and had done various public speaking, so that part really didn’t scare me. Prior to that, I worked for a national mental health organization and had done several interviews. One was in Forbes and the other was in The Chicago Tribune. And so there’s things in print with my name and experiences, so it’s not really a secret. But it’s maybe a little easier to talk to one person as a reporter and let them put your words down as opposed to standing up in front of a crowd of, like, 1,000 people and saying “Here are my experiences” with all their eyes looking at you.

I remember I accepted fairly quickly. But then, kind of, once I got to Portland, it was really
rough. It became real at that point. I got there, checked in, went to register, and I was kind of hoping to run into somebody I knew. I was starting to get pretty overwhelmed with realizing what I had gotten myself into. So I texted a couple people to say, “Hey, want to meet up?” I didn’t hear from one, and another was in a meeting. It was more like, “Hey want to catch up?” instead of, “Hey, I need your support.”

I was sitting near the registration, and someone came up at just the right time to say, “Hey, how are you doing? We were able to chit-chat a bit, and that put me more at ease. And then before the talk, I talked to several of my close friends who know my story, and I kind of asked them to sit fairly close to the front. I told them, “I just need to be able to look out and see a friendly face.” They actually spread out a little bit, so that helped me to
focus on a few people in the audience in various areas. It kind of helped me whittle down the crowd to a more manageable group instead of having to look out at a sea of people.

You said someone spoke to you at just the right time? What does that mean?

At that point, I was really struggling with my decision to be that open about my experiences. And even though if there’s any place to do it, it’s in front of peers and supporters, but it just still kind of felt, it was still almost a room full of strangers. I still had those questions in the back of my mind: “How will they accept what I say? Am I going to be treated differently because of it?”

And really, after the presentation, there was nothing but really positive things that people said. People came up and said, “I understand, I went through similar experiences.” I really felt like they were saying that for the first time to someone outside their circle. Because of the really hushed way that they said it. More off to the side. People who were a little more open about it were like, “Good job! You captured what everybody has wanted to say over the years.”

Did it surprise you it had taken that long to have such a presentation?

Yes and no. I think that even within the mental health community, a lot of the groups are started more by family members as opposed to _ I don’t like the word, but we seem to use it _ the consumer. So it seems that in mental health it’s the family members, and more recently the consumers are kind of joining in, having a voice. The same in suicide prevention. Mainly it’s been around those who lost somebody to suicide and their struggles and their pain and their path. But there’s still a lot of rawness around those feelings, which I think _ this is totally speculation _ they feel that wound is re-opened when hearing from people who’ve made attempts and lived, there’s the possibility they’re thinking that “My loved one could have lived, but didn’t.”

So are they angry or uncomfortable?

Uncomfortable. It reopens whatever feelings they have around their own loss.

Why didn’t consumers create their own voice long ago?

I’m really not sure. It seems that other consumer groups, there kind of seems to be two types. There’s _ for the lack of a better way to say _ a more radical group, and then there’s the ones who want to try to make change within the system. I think the more radical groups kind of get shunned in general, and even though they’re passionate, they don’t get the same encouragement and don’t have the same effect overall. And the ones working within the system, it’s really slow going because of the viewpoints of the ones who say, “We’ve always done it this way.” And it’s just hard to organize anything for such a small subset of people.

Did Michelle ever say why she decided to have the presentation?

She hasn’t said exactly. Her personality is really about openness and inclusion, seeing all sides of what’s happening. I think she recognizes that’s the one piece that’s really missing. And with her being president, she can make those changes quite easily.

What has this changed?

I think I still struggle with the fact that it’s so public. And I still have a fairly irrational fear of
how people are going to treat me when they find out about my past. Even though it doesn’t
necessarily fully define me as a person. And I kind of teeter-totter back and forth between “It’s already out there in print” and “Here’s some additional information.” But I think it’s still really important that we let others know they’re not alone. As I said, there’s resources out there, people who will support you. I have people in my support network at 4 in the morning who will drop what they’re doing and support me. I have a really good friend who is in a very demanding job, and I can call him in the middle of the day, and he will stop what he’s doing and help, if that’s what I need. And I don’t think people realize that almost everybody has at least one person like that in their lives.

Is there any evidence of your speaking out affecting how you’re treated?

Yeah. We live in the Google age now, and I’ve had some dating experiences where things
seemed to be going all right, then they bring up, “Oh yeah, I was reading this little article about you,” and people just act a little different or distance themselves. That seems to be the end of it, though everything else was fine. And then I have close friends that have varying levels of comfort in talking about my experiences, and some I talk to and some I don’t, but they don’t treat me any different otherwise. I think the biggest part is that, especially since you can Google anything these days, like looking for future jobs, if the employer looks at that and makes a decision adversely around it … I’m actually pretty fortunate. The job I have now, they Googled me, but actually my experiences are more of a strength because we work with people who might have issues of their own. And knowing the system serves as an advantage for some work I do. So I can turn it around and be a strength as well. But my gut says that’s rare as opposed to the stigma and negative stereotypes that surround it. It’s changing, but I think there’s not a balance there yet.

Tell me about your work and studies.

I just finished a degree in American Sign Language interpreting. And so I work for a company that does job mentoring for deaf clients who are referred to us by a state agency. Also, we have a grant for health care advocacy in the deaf community. So with job mentoring, I actually help with resume building, interview skills, going through the application process, helping interpret those assessment surveys they do a lot with jobs now, to see your personality. And once the client is hired somewhere, we do on-site supports, check in, any cultural mediation, any issues in the workplace, help educate the employer, the employees, communication tactics. Basically, how to work with deaf people.

With the health care advocacy piece, we help individual advocacy with health care providers who are willing to provide interpreters, a means of communication. We’ve had instances where a health care provider sends a bill for an interpreter to the client,
when it’s actually a business expense they need to pay themselves. We do workshops on health issues for deaf people. And we have clients that struggle with various issues that are, you know, some have counseling. It’s good to be able to understand what they’re going through and support them. A lot don’t really know my full background, but at least I’m able to empathize and support them.

Are you interpreting while they’re being counseled?

No, I don’t interpret for them. There is a counselor who signs.

How did you get into sign language?

In elementary school, a friend and I learned how to finger spell to talk without the teacher
knowing. I thought, “This is really interesting.” I got a book and taught myself vocabulary. The next year I was on safety patrol as a crossing guard, with the little reflective sash. There was a parent who dropped their kid off, and the parent was deaf. I started signing with them, going to their house sometimes. I was never shy about approaching people at the mall or in public who were signing. It was always well-received: “Look at the little cute boy who knows how to sign a little bit!”

It was always been in the back of my mind to do something that was related to signing. At that point, I was pretty well stuck in the position I had and saw little chance for advancement. I made the decision to go to school and become an interpreter. Actually, it worked out pretty well that after I started school, I got laid off, and I could focus exclusively for a while without having the demands of a full-time job. Some of the research I’ve done for papers for school, within mental health, the deaf community is really underserved. There’s little research around suicide within the deaf community. Some say it’s higher, some say the same. There’s no real evidence so far. But we do know that services are extremely limited in their native language.

Do you plan to be a counselor, too?

I don’t believe so. I do like providing direct services. I really like to be on the front lines of
services. I’m looking at eventually doing vocational rehab counseling. The advantage of being a peer is that I have shared experiences, and now I have ASL fluency. One thing I’m looking at doing is being trained to facilitate WRAP in ASL. The WRAP program, built by Mary Ellen Copeland, is a wellness recovery action plan. It’s a plan you can make when you’re well: what kinds of things you like to do when you’re well, what kinds of things crop up when you’re symptomatic, how you can counteract those symptoms when things are getting toward crisis. What is my crisis plan? Who do I call? What kind of treatment do I want? Who do I want to make those decisions for me? How do I leave the crisis plan and go back to kind of the status quo for myself? It’s really just creating a kind of wellness plan that you can recognize your own challenges and what to do to meet those challenges. As far as I know, no one is offering WRAP in ASL.

What is your grand goal?

I’m not really sure there is a grand goal. I’ve just always enjoyed helping others. It’s kind of been my defense mechanism as well, so I have to be careful about making sure to still focus on myself when I need to. Because what ends up happening, if I’m not doing well, I’ll help others instead of taking the time I need for myself. So even the first time I was in the  hospital, I seemed to be kind of focusing on some of the other patients, you know, being buddy buddy, supporting them: “Do you know about this resource?” Instead of really taking the time to focus on what my needs were. And I was still doing work from the patient phone, essentially. We were just finishing up with the implementation of 911 in my county. So I was literally calling each of the different phone companies’ data conversion reps, checking everything from the patient phone. Because I had their phone numbers memorized.

And nobody knew where you were?

They knew I was out sick. One of the companies that was out in California, they ended up
knowing I was in the hospital, but they didn’t know what for. It was Christmas time. They
said, “Can we send you a care package?” I said yes. It turns out they went to each others’ desks and collected different Christmas stuff and put it in a box that same day and shipped it out. Christmas pencils, candy, a Santa mug, things people had collected at their desks. It was really super nice.

And one of our local reps and other peers knew I was  in the hospital. I ended up telling them what was going on a bit, and they actually were able to come and take me out to lunch. The hospital at the time was fairly progressive. Structured groups all day, day passes where you could leave the unit if you were at certain levels. If you were at the most privileged level, when people took smoke breaks you could actually sign yourself out of the unit and walk around inside the building or outside. You’re not supposed to cross any of the streets. But you still had a sense of freedom, you weren’t locked in the unit with no chance of leaving until discharge. Once a week, they also had outings, so we’d go bowling or to a museum or to a movie. It really gave you a sense of normalcy.

I’m not sure why I always forget this connection, but the other deaf piece that comes in … There was another patient who was deaf and legally blind, who could only see if something was pretty much right in front of his face. We all were going to a group that was led by a counselor, everybody from the unit. This patient was sitting and reading by himself while everybody else went to the group. Partway through the group, the door opened and a staff member kind of pushed him through the door to join everybody. But there was no interpreter there. I was far from fluent but also felt that he needed to be able to know what was going on and be a part of that group. And I actually moved and sat on the floor in front of him and interpreted, and really, I was not even interpreting, just trying to get it across the best I could what was going on. I later talked to the staff and asked, “How can you bring this person in and have no interpreter, which you’re legally required to have, and force him to sit here when he’s not causing anybody problems by reading on his own?” They were like, “Well, you’re not an interpreter. So you can’t interpret anymore.” I was like, “Fine, but you need to provide it.”

Did they?

Not very often. They said, “Oh we scheduled them, but they didn’t show up.” Just excuses.

Did you get in trouble for speaking up?

No, but they were just not happy.

Do you think the hospital experience helps, overall?

That hospital, I was there twice. That was the most productive hospitalization I ever had. I’m not sure whether somebody else coined this, but there’s this thing I say now about psych hospitalization. It’s basically, “Evaluate, medicate, vacate.” That’s all they do. And you pretty much, you might see an individual therapist and social worker and your psychiatrist, but there are no groups, no activities. You’re simply warehoused, and they try to medicate the acute symptoms. And once they’re done, you’re out the door. And when I’ve talked to staff in a hospital that pretty much does that, the answer they end up giving is, “It’s a matter of the money we have available to provide services.” But the thing I don’t understand is, the same hospital I was at had the same amount of staff that’s sitting behind the desk all day as a hospital that’s not providing services all day long. And the hospitals that don’t have programs are at fairly prestigious institutions that you’d think would have exceptional care. I’ll try not to call anybody out.

Or if they do stuff, it’s, “Here are a bunch of magazines. Do a collage about how you feel.” If I have to do one more collage … It’s just not for me.

What else needs to be done to change the system?

I think there needs to be supports more similar to, like, the partial hospitalization system or
where there are supports without having to be in a locked unit. I think once you enter a unit and that door locks behind you and you know you can’t get out, there’s a certain amount of dignity that you lose. And there’s people that are struggling that need some support and might need some overnight support, but they’re nowhere near the breaking point where they need 10-minute bed checks and a locked unit and you don’t have your shoelaces.

And it’s just a litigious society that we have, there’s such risk aversion. So I think about what they’re doing in New Mexico with Sabrina (Strong), and when I lived in New Mexico, we talked about doing some kind of overnight respite care where people could come and stay if they didn’t want to be at home by themselves overnight. I’m glad it’s actually taking shape and being done. I think there needs to be more of that. I still feel there is a need for acute care, but it can’t just be acute care and warehousing and push you out the door.

Anything else you’d like to add?

I think people just have to, if you’re struggling, there’s always going to be the person who
says, “Let me know what you need.” And really, I know for myself I just have to put my pride aside and answer that question honestly. Because a lot of times, I end up answering, “I don’t know.” I mean, you know you want support, but it’s hard to articulate or set pride aside to ask for what you need. And for those that are supporting people, if you’re willing to be that front-line support, make sure you’re willing to take that call at 4 in the morning and support that person. Over time, I’ve realized that, if anything, people are more important than things, and the work will be there tomorrow, but the person might not be. So for me, people really do come first. If at some point that means I lose my job, I lose my job. But we just don’t support each other anymore.

Who else are you?

I know I kind of alluded to it in the introduction.

True. What else do you wish would come up when people Googled you?

I’m someone who supports my friends, cares about them. I’m a pianist, a cyclist, a kayaker. I sometimes call myself an extroverted introvert. I tend to lean towards introverted but still enjoy being social and being part of the crowd when I need to be.

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