The three people who regularly visted Rachel Kelty weren't real. But while Kelty, a writer, artist and baker, continued sinking into a deep depression, they certainly felt real.
"That went on for a long time," Kelty said. "Finally, one day, they came into my room on a spaceship."
In a meeting room at the Our Place Clubhouse on Pennington Street in downtown Tucson, Kelty talked about the days before she was officially diagnosed with a schizophrenic disorder. Someone in the room joked that the spaceship made since: After all, how else would Kelty get out of her depression?
Kelty's face beamed as those in the room burst out with laughter.
"It's good to have a sense of humor," she said. "Around that same time, I saw this great big Shiva. He told me he was going to embody my doctor the next day. So I went to my doctor's appointment, and I was looking at him, waiting, wondering if all of his arms would pop out."
More laughter.
After spending time with Kelty and others who are part of the Poets and Writers group at Our Place Clubhouse, I'd become more and more sensitive to the words mental illness, crazy and insane, but there we were, with Kelty and her fellow writers talking about mental illness—and sharing unexpected laughter.
"Basically, I heard three people for about three years, until I finally got on the right medication, and I was working with a therapist and going to school. I realized they weren't real about two years ago. Even if you know they aren't real, you experience them as real," Kelty said. "I had kind of a bad time when I realized how crazy I had become, and I got really upset. That happens."
As Kelty spoke, there were sounds of affirmation from around the table. The other members of the group had been through what Kelty had, albeit in their own way, with their own illness.
Every Thursday afternoon, the writers' group meets with Sheila Wilensky, a local writer and a board member of the Coyote Taskforce, the organization that operates the clubhouse as well as the Café 54 restaurant on one side of it, and the ReThreads Thrift Store on the other. The group recently received a grant from Poets and Writers, a nonprofit literary organization, to help publish a chapbook of members' writings. A chapbook is a small book, usually of poetry, but Wilensky said they plan to include a wide variety of writing from the group, as well as an introduction by U.S. Rep. Ron Barber.
Wilensky said it was her personal experiences with mental illness that led her to join the organization's board, and her work as an educator and writer that moved her to start meeting regularly with clubhouse members who are interested in writing. Together, the writers work on Natalie Goldberg-style Writing Down the Bones exercises, starting out with one theme, but often touching or ending on the pains mental illness has caused in their lives.
These are the things Wilensky calls secrets—those deeply hidden stories or experiences that need to be told in order for society to fully understand that the people in her group are just people.
"Perhaps it's an act of revolution," Wilensky said of the writers and their chapbook.
"I know, for me, I hate secrets. I know, in my family, we have my father's brother, who was hospitalized, and we never met. We don't know why," she said, adding that another cousin was diagnosed with autism and also institutionalized. There's also a niece who struggled with obsessive-compulsive disorder and wrote an award-winning book about her ordeal.
"I want to say that over the years in my life, of course, I've gone for therapy during difficult times," Wilensky said, adding that about six years ago, her doctor recommended she take an anxiety medication.
"I don't take a full dosage, but it has helped me tremendously. But, look: The reality is that I am lucky enough to be one ... who can afford this luxury of a $15 co-pay every month to get this stuff. Not everyone can, and I think that's an important part of this: Who can afford to get treatment, and who can't afford to get treatment, and who has to live with the shame?"
The shame that individuals with varying levels of mental illness experience is what Wilensky and others at Our Place consider to be the catalyst for a new civil-rights movement for people suffering from mental illness. Noting that she has seen civil-rights movements for African Americans, women and now the LGBT community during her lifetime, Wilensky said, "I believe we are moving these secrets out in the open from people who are treated and highly functional. Of course, it's a Catch-22: As soon as you say something about having a mental illness, people look at you differently.
"At the most-basic level, this group and our chapbook is about education. But it's also about injustice."
I hated thinking I was mentally ill. At first, it was a spiritual illness, alcoholism, drug abuse, post-traumatic stress disorder, a lonely childhood, but eventually it became a relief—a reason for extreme fear, shyness, solitude then hyperactivity, fear of being an outsider, having to hide my true self. Mental illness changed me—it changed the way I saw things. When I was "outside looking in," there "had to be a reason for such a renunciation." I had to make the transition of being outside and oblivious to being part of a community and (having) gratitude for a life that isn't spectacular, just ordinary.
—"Sugar Mountain," by Rachel Kelty
One term used at Our Place in place of mental illness is "brain disorder." It's preferred by some, because it gets away from the stigma associated with schizophrenia, bipolar disorder, depression and other diagnoses.
"It's still in the language itself, even the word disorder—this is the way to be; this is the way not to be. And there's not a lot of room for something else in between," Kelty said. "Right now, I like the word recovery."
At Our Place, there is a sense of relief—finding community, structure, building work skills or, as executive director Mindy Bernstein said, having someone for the first time ask you what you want to do with the rest of your life.
"Often, you feel that you are on the outside looking in, but here, and in this writing group, you are part of a community and have something to contribute," Kelty said.
"Once I found the right medications, I still wasn't feeling comfortable with the way I present myself. That's been the hardest part—just getting comfortable around people. I had really bad symptoms for about 20 years, and they went away, but they were replaced by a really, really horrible shyness."
She said she feels more in the present now. When she's talking, "it's not me putting someone in front of myself to present to people. It's me."
For a brief moment, Jared Loughner comes up in the conversation—how the young man with obvious mental-health issues became an unwelcome symbol for mental illness in Tucson after shooting and killing six people, and wounding 13 others, including former U.S. Rep. Gabrielle Giffords, on Jan. 8, 2011.
Sitting across from Kelty is Tyrone Scercy, a member of the clubhouse since the mid-1990s who recently returned after his symptoms flared up so badly that it cost him his job and landed him in jail for almost a month.
"What most people don't understand is that one in five Americans have a mental illness. It's impossible to say that every single person is a violent person," he said. "Most people diagnosed just deal with it in a successful way and are able to do great things in society. It's a small number that have to deal with difficult emotional issues that can cause them problems."
Scercy was diagnosed with bipolar disorder when he was 16, and he said he was lucky that he was often in private hospitals, because his father had insurance as a truck driver hauling gasoline. He said many people during that time didn't understand him, but that he worked on his issues from age 16 to 22, and then went on to college. While in his mid-20s, he decided he needed to move out of his parents' house and sign up for the public mental-health system.
"I didn't want to be a burden to them, and I wanted to deal with this on my own," he said.
Scercy was able to get an apartment and start a career in social work. But the past few years have been difficult for him. His symptoms returned when his doctor changed his medication, and that became a problem at his job at COPE Behavioral Services, where he worked as a recovery-support specialist. It was a job he took pride in, because he wants to become a social worker, he said.
"It gets frustrating when you are trying to be someone who is not on assistance for the rest of your life, and then I get sick and end up right back in the same spot," Scercy said.
The same spot is the clubhouse, where Scercy said he has always found refuge.
"There were some misunderstandings with my employer, who ended up also becoming my provider. It was bad situation for me to be in. Part of it is my fault, too. I can't put it all on them. There were some misunderstandings, and my symptoms were getting worse, and I ended up in jail for about a month without my medications. And then, after that, I went from hospital to hospital, trying to get stable again," he said.
"There are a lot of people who end up in jail who have mental-health issues, and simply, they are acting out, and no one understands they have mental-health issues."
Scercy said he is working again, but in the fields of retail and employment counseling. The pay is minimum wage—half of what he was earning before.
The writing group helps him express himself, Scercy said. He said he's even returned to several children's stories he's written and is interested in finding an illustrator and publisher.
I have gone through so much hardship behind my mental illness. I have lost jobs, relationships, and even valuable time. I have faced adversity at every corner of my life; others may have wanted me to give up and just wallow in my mental-health despair. You know, sit there and be a compliant patient and just not cause issues with myself and others. I am already a peaceful person at heart and want peace for my fellow man, woman and child. I still, however, want the dream all Americans and others want for their lives: prosperity and a life of happiness.
—"Three Things You Would Like People to Know About Your Mental Illness," by Tyrone Scercy
At one end of the table, Doreen Scherf smiles at Kelty and Scercy's stories, offering compliments to her fellow writers and reminding each of them of their talents. It's Scherf who brings up Scercy's children's stories, as well as Kelty's talents as a baker at the Small Planet Bakery.
In addition to participating in Wilensky's Thursday writing group, Scherf also leads a Tuesday peer-writing-group at Our Place. She said writing and other forms of creative expression have helped her and others feel better. She also credits Our Place for its supportive atmosphere.
"This is a really safe place," she said. "It saves us from isolation."
For about 10 years, Scherf worked as a middle-school teacher. She looks back at that time and realizes she was manic during most of it. As she was going through severe depression, she turned in her resignation.
"Because I was losing my mind," she said. "I mean that literally. I didn't know what to do. I loved the kids."
She left school to get help, thinking she'd be able to return. She did at one point, but was able to last only one semester.
"I have anxiety. I was suffering from depression and even heard voices and was diagnosed with a schizophrenic disorder," she said. "I was very sad. I was a very good teacher. I was also bipolar—I was up and down," Scherf said.
Once Scherf realized she wouldn't be able to return to teaching, her case manager helped her find Our Place. Her husband wanted a place for her to go every day, because he was afraid she might hurt herself while he was at work.
"I just needed to get going, get moving. I fell in love with it," she said of Our Place.
Scherf said most people don't understand that she has a mental illness, which makes it difficult to explain when she tells people she can no longer teach, or that she needs to take Sun Van transportation because her medications prevent her from driving safely.
"It shouldn't be shameful. It's not contagious and not something you can definitely always see, so it is difficult to explain. People have said to me, 'You look all right to me,'" Scherf said.
"And I think the other thing is what we all say: We are not evil, not dangerous. Sometimes we are to ourselves, I think, for sure. But I have never, ever wanted to hurt anyone else."
I am 40, and I teach literature to eighth-graders. They give a lot of stink eye and are very different from each other. I have had four hair colors in two weeks and now there's not enough hair on my head to change the style. I have been diagnosed with depression, finally, and I want to have a baby, but that's not in the stars. I want to go into the MFA program at the U of A, but we can't afford it. Work is killing me. My passion is being sucked out of me. I am very, very sad and feel immobilized.
—From a prompt: "What We Were Like at Different Stages in Life," by Doreen Scherf
Writing, Scherf said, gets into your core. "It helps you simply express yourself and makes you think about things you never thought you would."
When asked if she thinks it's saved her life, Scherf mentioned a thick, red journal she has at home. During her deepest depression, she filled every page of it.
"But now I'm afraid to take it down and read it. I remember back then that I felt like I was walking through Jell-O. My medications that I am on right now are working very well. I have a very supportive husband, sister and in-laws. Life is good."
Like Scherf, Pam Lipshutz is eager to compliment her fellow writers. Sitting at the head of the table, she looks fondly at everyone and praises their writing and their art—both Kelty and Scherf are also capable artists.
"They are beautiful," Lipshutz said.
It's an example of the unfailing support Wilensky said she sees during the writing sessions. When the group first started, she went over the rules most workshop-style groups try to maintain: Be careful with criticism, and be supportive of each other's work.
"What they do after each person reads is clap," Lipshutz said. "I've never seen anything like it. It's wonderful how they support each other. I leave here feeling so good.
"For me, it's a good form of therapy," she said. "It gives me a chance to express feelings that I may not be dealing with, and that's especially good if you can't get therapy."
What also helps, she said, is how Our Place helps her focus on the future and on finding a part-time job. But Lipshutz admits that she struggles with her mental illness.
"Ever since I was a kid, I've basically had mental illness—OCD, anxiety, and I was in special ed," she recalled. Lipshutz also had severe curvature of the spine. At 18, she had her spine fused. Now, more than 30 years later, she suffers from stenosis and mobility issues, which force her to use a walker.
"From the get-go, I was challenged. I have a degree in social work and nursing, and I couldn't do either of them," she said. "My anxiety prevents me from being able to stay focused. I was finally diagnosed with dysexecutive syndrome. It's like a learning disability. If I am in a stressful situation where there is a lot of information coming, I totally blank out, and someone has to step in and take over for me."
In social situations, one question that often comes up is, "What do you do for a living?" Lipshutz said she is still trying to figure out what to tell people.
"It is devastating not being able to work, not having a job. People look at you and say, 'She sounds normal; she looks normal. What the hell is your problem? Are you stupid? Are you lazy?' But what the hell can I do? If I don't have expectations, I do fine. When there are expectations, my anxiety goes up. Although right now, my meds are working, and, yes, I will have to take them for the rest of my life," she said.
Lipshutz said she was approved for disability aid, but she still wants to find part-time work. But just looking at the want ads gives her panic attacks.
"Look, when I was first born, I never said I wanted to be a mentally ill person. Believe me, no one here does," she said.
"All of me needs to be acknowledged. At least socially, here, I don't have to hide. I am so used to feeling ashamed of myself."
Our parents divorced in 1974, leaving my sister and I homeless. Though my sister and I traveled with Mom to Portugal for the summer, we returned to the country with no address, bed or food. Mom didn't return to the country. Dad didn't invite us to stay at his girlfriend's house. Until college began, we had to bunk down at the homes of friends. Our friend's parents were forced to temporarily adopt us before our first semester of college.
During my first college break, I stayed with my sister at her college. The dormitory bed we shared was unusually narrow, but we managed. Fortunately she was on the food plan. She would sneak food back for me at the dormitory that she put into plastic containers and stuffed into her coat sleeves. If it hadn't been for her, I would have been out on the streets without food during my school break. So much for growing up middle class. It felt like our parents had abandoned us.
—"No Room at the Inn," by Pam Lipshutz
Because of shame and social stigma, those trying to get better in the midst of mental illness tend to isolate themselves. Mindy Bernstein said her organization's clubhouse model works, because it addresses that issue.
The organization was formed in the late 1980s with funding from three mental-health-care providers. That funding mechanism changed in the early 1990s, just as Bernstein was hired: A group of parents and staff members banded together to keep the clubhouse going as a self-funded agency.
Bernstein said people are asked what they want to do with their lives as soon as they arrive, and they are asked to also think about that as they are assigned volunteer positions. In a "good clubhouse, you can't tell the difference between members and staff. Everyone is working," she said.
How people are treated is also different: The clubhouse isn't a clinic. People who are referred by their behavioral health-care agency become members and are not considered clients. And words, as in the writing group, are important. Bernstein said she stays away from the term mental illness and prefers to use brain disorders or brain diseases.
"You're insane; you're a wing nut; you must be crazy; you belong in an insane asylum," she said, giving examples of the derogatory language that can surround discussions of mental illness. "This language is tolerated in our society ... while words like 'kike' and 'wop,' we don't use that language. We don't say 'crippled' or 'retard.' We, as a society, evolved." That kind of change needs to happen for people with mental illnesses, she said.
Bernstein said the clubhouse also works because funding comes from people who understand the issues. One important funder is the Community Partnership of Southern Arizona. "They have done so much in this community to help reduce stigma," Bernstein said. "They have a vision of what a community in recovery looks like."
The group has brought in 700 members since it was formed, but most of them have moved on with their lives—marrying, finding jobs, getting promotions, or going back to school. And many check back in with Our Place to say hello.
"We have about 150 individual members who come through (to volunteer and seek community) every month ... and we never know who is coming," Bernstein said.
To me, peace is the garden, or nature in general. There is nothing nicer than a quiet morning at home, sitting with my coffee and smokes, listening to the birds who are singing their lilting morning songs. There is a difference in their joy between morning, noon, afternoon, evening and at night.
From scripture comes the phrase, "His eye is on the sparrow, and I know his eye is on me." And how lovely it is to watch, early morning, when the air has a crystal-clear fresh quality, as the little birds take to the birdbath, squatting in the water, tilting their tiny bodies to pick up every splash, flapping their wings to create splatters of water that wash their wings. Sounds are dampened. Quiet, save for the birds' morning songs.
It's the same in the garden. The quiet of the garden, where my squash plants sport huge orange flowers, with the promise of fruit and sustenance to come.
—"Peaceful Garden," by Lani Halbert-Faraj
"We do tend to isolate, but being here with others also dealing with this is very helpful," Lani Halbert-Faraj said. "And it is indeed an illness."
Halbert-Faraj said she has struggled with mental illness most of her life, but most recently, she found herself addicted to opiates after a doctor oversubscribed medications to treat fibromyalgia. The doctor is now in prison, and Halbert-Faraj has to go to the methadone clinic every morning.
"I found myself staying at home more and more. I wasn't feeling better, and then a friend told me about Our Place. I've only been coming here for eight months. I try not to miss a day," she said. "It's been a tremendous gift. I have a reason to organize my life more than ever before. My depression didn't seem to relent, and it was because I was isolating at home. This opened up a window for me. I get dressed, and I go somewhere."
The writing, she said, has become a form of self-discovery. "I've brought forward things I hadn't thought of before. I like Sheila's approach in having us write. She inspires us with her openings and readings. I leave very up and hopeful."
Perhaps the chapbook they make will give people a different perspective. Halbert-Faraj thinks about people with physical disabilities who have to go through recovery. Society thinks of them differently, she said.
"That's why this is so beneficial for us. This is a grand portion of our recovery."
"Violence Doesn't Equate Mental Illness," by Sheila Wilensky
Dear President Obama:
Congratulations on your re-election! We need you in the White House fighting for the middle class and the most vulnerable among us, who often have no political clout. We also need you to fight for the millions of Americans with some form of mental illness, who have lived with the stigma of "the other" for way too long.
There's mental illness in my family. We all fit somewhere along a spectrum of mental health. Mental illness afflicts Americans in the 99 percent as well as the 1 percent. The difference is those in the 1 percent can afford the best treatment.
I believe that removing the exaggerated stigma against people with mental illness must be the next civil-rights movement. Toward that end, I've received a grant from Poets and Writers Magazine to write a chapbook with members of Our Place Clubhouse/Café 54 here in Tucson, which serves people in recovery from serious mental illness. (I'm on the board of the Coyote Taskforce, the parent organization.)
At our weekly writing workshop, we did some brainstorming, hoping to give you ideas from writers who live with mental illness. This exercise stemmed from comments made during the second presidential debate, the town hall-type format where a young woman asked you how to combat gun violence. Mitt Romney was clueless, saying that having more two-parent families would help.
We agreed that your answer was probably incomplete—maybe because we all like you better—but you said that we needed to keep guns out of the hands of the mentally ill.
Many people with mental illness serve well in high-level jobs. There's a difference between functional and dysfunctional people with mental illness. They shouldn't all be lumped together, but more than anything else, this happens because of a lack of education.
Mr. President, those with mental illness are far more likely to be the victims of violence than the perpetrators. May we begin to educate a bit on what would help people with mental illness, beginning with one writer's comment, "Violence doesn't equate mental illness."
Brainstorming ideas:
Don't cut programs that help Americans who have mental illness. The states have; we need the federal government to be on our side.
Educate the public to not see us as flawed individuals unlike people with physical ailments.
Establish an advisory board with members who have mental illness. Media should educate with public-service announcements.
Re-establish counseling as a component of the Affordable Care Act. Increase the Social Security disability component for people with mental illness who are attempting to improve their quality of life with jobs, living on their own. (People with mental illness have a higher mortality rate because they have less access to medical and dental care, let alone psychiatric care, and have a lower quality of life.)
Get the arts back into all our schools. Art heals, and is cathartic for kids with mental illness, whether budding or full-blown.
Please use your bully pulpit to discuss and help educate the public about the pervasiveness of mental illness in our society, noting that there's a big difference between someone like Jared Loughner, who was never treated for schizophrenia, and those receiving helpful treatment.
We look forward to hearing from you and working together!
Hopefully,
all of us
