A View From The Inside

Lunch at Cafe 54 is delicious in so many ways.  The food is fabulous, the atmosphere is light and lively, and The Editor is always good company. We were breaking bread and sharing stories before she leaves for Maine, and it looked like we'd end up kvelling about our children, once again.

At least, that was the plan.  Then The Author walked in.

She's a member of the writer's group at The Clubhouse next door.  It's a safe place where those dealing with mental illness can have a cup of coffee, play a game of cards, read a book, learn a skill, take a class.  Cafe 54 is run as a Clubhouse project staffed by members; the customers are an eclectic mix of jurors on lunch break and downtown office workers and students and those involved in Clubhouse programs.  It looks like very other busy Tucson cafe at lunch time; the difference is evident only in the fact that you pay no tax at a not-for-profit venture.  It's a guided step back into the real world for those whose illness has given them a time out.

The Author was a college student when she became ill; that intellectually curious woman is at the core of who she is right now.  The woman she is right now speaks openly and candidly about schizophrenia. She laughs about the voices in her head as she tells us that her autobiography began as an answer to their comments.  Walt Whitman and Paul Theroux and involuntary commitment.... our conversation was wide ranging and profound.

No one wants to have a public meltdown, she informed us.  The stigmatization felt internally by those with her diagnosis is matched by the concomitant worry of public exposure.  Waiting in line in the cafeteria, having an episode, The Author was startled and then comforted by a friend's hand on her shoulder and his Okay, now.... in her ear.

Overtly, she rejected his help. Inside, back at the person who defines her, she could see the love.

The rejection of help is the symptom.  Helpers should not be put off by protestations. "I'm fine," she told us, is the self-protective cocoon of the illness itself.

At her core she knows this.  It's not easy to mirror it on the outside when your mind is creating incongruencies.  It's an isolating existence, this combination of being constantly on guard and feeling judged for behaviors over which your control is limited.  It feels safer, easier, more comfortable, to shrink your world.

That fixes the outside, but, again, at the core she knows something is missing.

No one wants to feel alone.

You do feel the comfort inside, even if you're rejecting it on the outside.

The conversation began with Santa Barbara, an event of which she was unaware.  As she considered the similarities to Tucson, I wondered how she would tread the line between public safety and individual rights.  What would that system look like? How do we protect innocents from incarceration....

.... and then she began to talk.

When she is dealing well with the world, she recognizes that some of her previous behaviors had been bizarre, that she had truly deviated from the norm, that something was not right.  When she is having an episode, that reality check is missing.  Asking her if she wants help is beside the point; she's not dealing with that right now.  Helpers should not forget that she feels their love even when her behavior says otherwise.

Reframe the conversation, she suggested.  The hospital is a safe place. They understand and accept the experience.  You can have symptoms without judgment.

She was tired of people telling her to pull herself out of it.... and the person who tired her the most was herself.  Going to the hospital is pulling yourself out of it.  It is not admitting defeat, it is recognizing a pathway to the other side.

She wasn't presenting a locked ward.  She was presenting a comforting place to have your meltdown. She was occupying the present moment, speaking to the issues which define her experience: isolation and stigmatization, first cousins to mental illness.

Her solution to the problem of young white men with untreated mental illnesses is early intervention. She is able to see the hospital as a refuge, and has taken herself in for the occasional tune up over the years.  She and The Editor will be going over the first draft of her autobiography in the Fall, talking back to the voices by telling her story.

There was so much passion and raw emotion and absolute silliness in our conversation.  We teared up and laughed uproariously and agreed that others should hear her point of view.  Stay tuned to hear updates on our plans for A Salon at Cafe 54.

The message is simple

It's hard to try to find the person on the other side, but it's worth the effort. 

And, on that other side, she is able to see the love.

We're All In This Together

Any thoughts I might have entertained on the subject were called into question on January 11, 2008.  Not that I ever gave it much thought.  It had touched my family, but we'd managed to ignore it. I worked along the edges, but never did more than dip a toe in the water. It was an issue for the other.  It wasn't my concern.... right up until the point when it was completely my concern.

A mentally ill young man killed my little friend; I confront the aftermath every day of my life.  Bullets shattered a sunny, Saturday morning, along with my hip and my sense of safety and security. Who is that young man over there, muttering to himself?  Why is that woman staring blankly at the sky?  I see danger around every corner.... might they be mad?

And if they are?  Do I walk past without saying anything?  Do I mutter and turn my head?  Do I complain to the woman behind me in line?  I watch that happen, and I wonder if, perhaps, there isn't a better way.  

My first cousin was adopted at birth.  Fifty-some years ago, regulations and background checks and information on family of origin were provided grudgingly, at best.  My cousin was a cute baby who became a schizophrenic young man.  He stole the centerpieces at my wedding, hiding them in the bushes nest door.  He was loud.  He was unpredictable.  His parents were flummoxed.  

There was therapy and there were half-way houses and there was tough love.  My mother and her brother weren't close. We got together on holidays, but they never spent much energy keeping in touch.  My cousin was damaged goods; it was easier to avoid them entirely.  You had to be on your guard when you were around him; keeping Daddooooo's behavior in check was enough for my mother.  She didn't need to worry about another human being who might fly off the handle.  

After all, what would she do?  What could she do?  Therapists and medication and structured work experiences had been tried, to no avail.  Her brother joined NAMI and worked on legislative solutions. Community-based treatment, the second half of the 1970's de-institutionalization movement, was without funding or local support.  No one wanted a house full of mad men in the neighborhood.  No mall wanted a walk-in counseling center in the space next to the Nike outlet.  Insurance didn't recognize the issue as one requiring consistent, long-term management, and, as he aged, my cousin's insurance coverage went from private to public assistance.  The lines for care in that segment were stretching out the door. 

Still, my cousin, like my shooter, roamed the streets.  His friends, like the shooter's friends, gradually disappeared.  It's exhausting to try to fix crazy... and even more so when the patient refuses to accept reality. It was easier to ignore it all.

For my mom, that was easy.  We lived our lives in separate towns.  We didn't have to be confronted with bizarre behavior. As we got older, my cousin stopped arriving with his family for events.  No one ever asked where he was.

No one ever asked.  

How lonely that must have been for my aunt and uncle.  How isolating to have a part of your family dismissed like unwanted mail. How frightening to feel that the burden rested solely on their shoulders, knowing that the help they needed was no where to be found.  

They tried. They found a program that worked.  He stopped disturbing their sleep with loud, uncompromising demands made from the front porch in the middle of the night. His younger sister learned to cope with him, as her parents aged and she became the responsible adult. She has her own son, and she has her brother, too.  He doesn't know how lucky he is.  She cares.  She asks. She stays involved.

I understand my mom's reluctance to deal with the issue.  It was what she learned from her own parents - if it's not good news, stay away.  Immigrants, they had developed a framework to protect themselves from a strange, new world.  My cousin's madness, my shooter's madness, their strange worlds are so easily avoided... until they intersect with you on a sunny, Saturday morning.

Can't we do better than this?  The mentally ill are here among us, trying to make their way in a world which is as odd to them as they are to us. Medication, counseling, organization and community can combine to integrate those with needs into the mainstream. This is true.  I read the research in school  

But, it's not cheap. It's not easy.  It's not comfortable.  It forces us to come face to face with questions most of us would like to ignore. What does it mean to be okay? How much deviation from the mean can a society accept?  How much help can an adult be required to obtain? Where will that help be delivered, by whom, at what cost?  

While we mull those issues, the mentally ill are walking among us.  Youngsters, like my cousin and my shooter, ought to be able to rely on the grown-ups in their midst for assistance.  When the adults are committed, as were my aunt and uncle, a real life can be cobbled together from the fragments mental illness has left behind.  My cousin is living in a sheltered space, working at a meaningful-to-him job, contributing and participating in society.  My shooter, whose parents ignored the warning signs, the requests from teachers and administrators and their child's friends, who paid no attention to behaviors that were just not right, is living in the US Medical Center for Federal Prisoners in Springfield, Missouri.

According to Pam Simon, who knew him in middle school before he shot her at the Safeway, our gunman was a quiet, well-behaved, gentle young man. I want to believe that our tragedy could have been prevented if someone, if anyone, had done more than complain.  If someone - his parents, a neighbor, a family friend - if anyone, had intervened, my life would be very different right now.

We are all in this together.  It is past the time to stand on the sidelines and watch the situation worsen. Funding is tight, time is precious, resources are scarce - that's all true and I don't care.  Our fellow humans are suffering, some silently, in the shadows, and some violently in parking lots.  It is in all of our best interests to recognize that we all have am interest in the solution.

At Cafe 54

Lunch was delicious.  The grilled spinach was wilted but not soggy, the bread was crisp and crunchy on the outside and soft and gooey on the inside.  The entire sandwich had structural integrity; I finished it in record time.

After lunch, I followed my friend next door, to the conference room. There, I watched something magical explode.  It was subtle, the change in attitude as the hour wore on.  I began as an outsider and left as a friend.  I can't pinpoint the tipping point, but all of a sudden we were all talking about the same thing at the same time, agreeing, laughing, sighing.  It was respectful and joyful and rueful all at the same time.  It's been a while since I've felt this way.

Cafe 54 is a project of the Coyote Taskforce, whose mission is

to support individuals recovering from persistent, chronic mental illnesses; to help them regain their ability to move towards their recovery with a focus on reintegration into the community.

My friend leads a writers' workshop, and it was they who invited me to visit this afternoon.  She thought the group would benefit from hearing me talk about resilience.  They never got the chance to listen to me wax eloquent; we were engrossed in conversation from the moment I finished my introductory who am I? sentences. They had their own agenda, and I was happy to follow along. They were sharing their lives with me, just as I'd shared my bullet wounds with them.  We were up close and personal in short order.

The shooter was in the room, too, off in the corner, observing and being observed. I don't think that I was alone in sensing his presence. I was in that room because a young man with a mental illness changed my life.  The larger truth, the one we were talking about, the piece that was nagging at us was articulated by one of the participants:  That's not all of us.

The fear of "the other," the one who looks different or responds strangely or cannot participate in society in a way that is acceptable on the surface, that was what held us up. My shooter was as threatening to them as he is to me.  That he never received the help he needed, that he never had the opportunity to get to a manageable place with a chronic condition, that he was alone while he was getting sicker - all that pierced our hearts. I've talked about forgiveness and understanding and what I can and cannot accept in many venues over the last two years; this afternoon was a whole 'nother ball of wax.

Though our topics ranged from gun control to the availability of services to research in brain health the theme was unchanging.  Inclusion and understanding.... is that so much to ask? We are all in this together. Preventing tragedies like Aurora and Newtown is possible; on that we were all agreed.  It was the larger question of mental illness in society today with which we were tangling.

We had no answers. We created no solutions. We shared different sides of an equation, and I only hope I was as helpful to them as they were to me.

The workshop is creating a chapbook to move the conversation along. Historical, poetical, and lyrical pieces will be included.  I've been asked to contribute to the project, too.  Flattery will get them everywhere; I'm compiling ideas amidst the mess on my desk.  Until then, I'm continuing to explore my role in this issue. I'll keep you posted on how we can help.