Friday, May 30, 2014

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.

6 comments:

  1. Thank you so much for sharing a very personal and intimate moment. There is so much truth in this piece. I will need to come back to it and look at it again. I agree with The Writer that early intervention is crucial, but I wonder how you do it. Having worked with high school kids all those many years, I tried so hard to intervene in lives I saw disintegrating right before my eyes, and yet, the help was either not there, or I was the only one who saw a need to intervene.

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    1. It was surprisingly profound and altered my approach. I don't know how you make others aware, out how to get the services where they need to be, but I'm thinking about it through a different lens now.
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  2. A better understanding of mental illness should be what we aim for with all Americans. Yes, we need to be protected from violently mentally ill people but we need to understand something like schizophrenia is only violent in 10% of the cases and that means potentially violent-- not will do something. I have tried to talk to someone in the midst of a time of unreality when their schizophrenia has taken them over. It had me in tears. They are not where we are. But that person was not violent. I also though had a neighbor who saw things, heard voices and I think had a more violent type. He imagined his wife and myself being killed by a cougar. Not hard to see, since their marriage was troubled and she and I were best friends, that some of that was wish fulfillment. He got in some fights but he was most dangerous to himself. But I would not have opened the door to him had he knocked at it after his wife left him. Fortunately he didn't knock. I just think we need to understand, and so does the person with say a bi-polar disorder that this isn't that simple and not all cases are the same. One problem I've run into with schizophrenics is they don't like the meds. They take away the visions but they have other symptoms. Most everything you take does.

    What I would like is for us to realize as a nation that not all mental illness means dangerous. I would like our schools to be better able to find the ones who need to be diagnosed by a professional. We need to understand and treat it like we do diabetes-- a chemical disorder. Ignoring it won't make it go away but it's not something to be ashamed of and it's not the devil taking them over.

    I told my friend with schizophrenia, when she tried to tell me it was like being a shaman-- shaman can come out of their illusion. She could not, not once she was deep into a world of pink rabbits, dolphins and whales. If we saw it as a chemical imbalance, we'd be more apt to find answers for why the onset for young men is so often in their late teens.

    The movie Robert Downey Jr. made about the journalist in LA who befriended a street guy, The Soloist, is a good film to watch about what can be done and the dangers also. Good film and true story based on real people.

    Right now though we are not taking it seriously, leaving families alone to cope with it, and then fretting over it after the fact. We could change that and make say schools the first line. Give parents more help with it.

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    1. Every single thing you said rings true.
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  3. I wish mental illness wasn't stigmatized. More people would get the help they need if they didn't feel alone and then have to deal with the social implications of mental illness. What people fail to realize is that this also impacts families and communities. We've all seen it the signs of people who need help and yet sometimes we feel powerless. I suffer from depression and I have no problem telling people that. I tell people because I want them to know that it can affect anyone and it affects a lot of people.

    I agree with Rain that we are not taking it seriously--or sometimes we write people off as being "crazy" when in fact there are different levels of mental illness. All of it should be treated and some need more help than others, but we are failing to realize is that if we don't take it seriously, it will spill-over to the community at large (as in shootings). We have to do something about it and now.

    Mental illness needs to be taken as seriously as physical illnesses.

    Thanks for helping us all to see that mental illness is so much more than labeling someone as crazy.


    Megan xxx

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    1. Stigmatization is such a powerful force.

      I remember when my grandfather's cancer was referred to as "stomach trouble they are treating with cobalt".
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