Living with Learning Disabilities as a Psychotherapist, Writer, and Mental Health Consumer

Never saw my hometown until I stayed away too long

I never heard the melody until I needed the song . . .

. . . I never I spoke “I love you” till I cursed you in vain

Never felt my heart strings until I nearly went insane

                                                           

–Tom Waites, San Diego Serenade

 

It is funny how sometimes one cannot really see themselves until they get a glimpse of a harsh paradoxical reality. Perhaps doing so gives one that alternate perspective that is so necessary to really see oneself and gain wisdom. I think that’s what Tom Waites is getting at in the excerpts of his song I posted above. That is why the ability to relate to others is such a powerful teacher and healer that is so needed in a therapeutic endeavor. Other people’s struggles help us stop and see ourselves better. Even if it is painful, growth is likely.

And, just as the song goes, I never really saw myself as a learning-disabled person until I just recently had the opportunity to sit with an individual while she was receiving a mid-life diagnosis. It was a diagnosis that I thought might be helpful. Little did I know that before this sitting, I rarely considered the full effect of how a learning disorder affects me as a writer, therapist and mental health consumer.

 

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A Need for Providers who Specialize in “Psychosis.”

This story is for the mental health providers or peer counselors who are invested in developing treatment for people who have experienced “psychosis” across diagnostic categories. I know firsthand that this can be achieved. I want to help other interested parties develop their own practice so that an important need gets addressed.

Maybe the reader can relate to me! I was hired straight out of college into work in the counseling field. I started to work with an adult mental health population at my second job at the age of twenty-three. Since that time I have been increasingly focused on how to make therapeutic engagement meaningful when working with people in “psychosis.” In the field there are many who will say or imply this is not possible. They may argue that the mental health system is the best we can do.

I believe uniquely talented specialists are needed primarily because the mental health system fails so many people. We need outreach specialists with lived experience who can meet sufferers wherever they are at to encourage them to seek out therapy specialists, competent in group and individual practice. The more people with lived experience the better! Even better we need a system of self-support to sustain people outside the system, like the hearing voices network.

 

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Writing for Mental Health: Six Basic Considerations

I like to think that I could recommend writing to some other people who have been subjected to a diagnostic labeling process that diminishes their hopes and potential. Indeed as emotional tension pulses through my back and appendages, I have found few other outlets that are there for me like the mixing and mastering letters.

Sure, I have been sent to a shrink for being who I am. Sure, I have been buried in institutions at different points of my life. Indeed life on that trajectory has filled me with loss and lack. But when I’ve found myself incarcerated immobile, I’ve been blessed to find value in defining it. Initially as a teen, I found  appreciating expressive words through music got me started. The more I switched from song to verse to story, I found the problem-solving that takes place in the editing process satisfying. Indeed for me there are few other outlets that rival writing in terms of learning about life and wellness.

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A Vacation Day for a Schizophrenic:

Fifteen years ago, I remember hearing a psychiatrist who had just been away for two weeks say, “There is no such thing as a vacation when you are schizophrenic!” As an unlicensed professional vying to get a staff position on the unit, I had carefully avoided rolling my eyes. I had politely nodded my head as though it had been a thoughtful thing to say.

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This year’s weekend of April 1st, my wife supports me in insisting that we take a vacation day. She packs up her hybrid SUV with camping materials and when I finish my Friday commute, we hit the interstate headed north. We plan to camp and hike at the Kings Range on the Lost Coast in Humboldt County, but we know even before we sift through the remains of the Bay Area traffic, there’s no way we are going to make it the whole way.

We make it to the city of Ukiah and drive until we find a Safeway. I am about ready to drop as we load our shit into the front of the car and depart to hit the restroom. We pass the panhandlers and the no camping sign and I start to stress about the possibility that the security will force us to move on in the middle of the night.

“Don’t worry about it my boobie,” says my wife.

I look into the eyes of a particular panhandler and hate our privilege. There sure are a significant amount of late night shoppers who are finishing their long weeks. I ponder the meaning of it all over the urinal. After we regroup, we steal into the back of the SUV.

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Stigma

Jargonizing the Stigma Concept:

Stigma is a mysterious external process that becomes internal that all message receivers face. Though stigma works in many different ways, I think it is particularly astounding and deceptive that it is not considered part of the definition of all forms of schizophrenia disorders. In my mind including it in the definition is a way of acknowledging and respecting that part of the negative outcome for those who suffer is the way society and our culture defines and treats the phenomenon of special messages. Acknowledging the role of stigma suggests that the outcomes of people becoming resigned to isolate, to sit and smoke all day in a board and care setting, is not only the result of their internal choice or abilities but the systemic interplay of individuals and the community that surrounds them.

For example, having myself transitioned from being treated like a hard-working, conscientious social worker who inspired social change, to a mental patient who needed to be locked on a ward for my own safety, I know that the power of this concept first hand. The transformation was profound! Suddenly my strengths were no longer defined by me. As I walked in circles on the floor to maintain my need for exercise, the only strength my psychiatric nurse gave me was that my family, in spite of all the hurt that I had experienced over the past fifteen years, was good family support. Two years later stigma still dogged me as a deli worker who worked under the constant threat of being fired. Now, fifteen years later, in spite of the fact that that I have a house, a wife, and a job where I am appreciated, I still battle with a sense of being slandered and rejected while my work remains unacknowledged. While I have not let stigma ruin me, I work with people who are extremely undervalued who are fighting the same demon. I write notes that diminish their efforts so the organization I work for can get paid.

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Nine Social Skills Continued

Nine Social Skills I Developed for Myself:

Though in developing these social skills, I initially took a stab at writing from a universal perspective, I have had enough experience running them by people in groups to recognize that many of these are personal. Mad people are very diverse. As a result, the following are meant to be helpful in helping message receivers consider social skills that they need to penetrate the cultural enclave of their choosing. However, it is a wide world with very distinctive individuals and cultures so message receivers need to be constantly exploring their social skills even if they are neuro-divergent, like me, and struggle to do so.

I, for example, have learned to adapt to a ghetto culture and am somewhat comfortable in these contexts, however, have a difficult time switching so that I can be in mainstream culture without losing my social skills. When I feel excluded or sense gossip and slander, I withdraw and lose my ability to socialize. Thus, my ability and sometimes willingness to overcome deficits varies.

The following are set up to help me survive and overcome hostile environments. I’d argue that all message receivers need to consider adjusting social skills to overcome stigma and work together to help each other be successful. Perhaps some of what I have put together for myself may help message receivers and their helpers spot these issues in others and better reflect on the social skills they need to use to replace their retaliation reactions. The goal is to build relationships instead of break them.

 

Social Skill #1: Learning lessons from being punished or unjustly victimized
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Nine Social Skills

To avoid punishment, message receivers will need to build relationships with people who socially sanction the message experience. Social functioning will often require that the message receiver engage in relationships that are in the culture of the “normal” consensus reality. In fact, by the time many message receivers make it into a group many are taught through the mainstream system of care (and perhaps through internalized stigma) to deny their symptoms and play it normal. Indeed at the onset of group, it can take a long while for many group members to share message experiences not only because those experiences are traumatic, but also because they fear being persecuted for doing so. While there are message receivers who stick to their guns especially early in their message crisis, many experienced message receivers already know what it takes to survive in a world dominated by storm troopers. Often, it is anger and emotional desperation that makes them act out their symptoms when in crisis. The game becomes to contain these experiences so that there is no punishment. People may notice something is up with some of us, but social sanctions forces people to contain themselves when they can. Often times the way this is done is silently disdained. And still there are very different degrees of social skills as message receivers do this.

For me personally, learning to submit to this process was very challenging without medication. I do not consider myself to hold good social skills on the whole. In addition to struggling with messages, I like many message receivers have been diagnosed with dyslexia, ADD, and consider myself to be influenced by a mild level of autism. My whole life I have gravitated towards people who are different who might give me a chance. Thus, message receivers who are likewise neuro-divergent might also struggle with basic social skills like looking people in the eye etcetera. While I do my best to accept what I perceive to be the bullying nature of a great deal of social interaction, I do not like the fact that social groups exclude and differentiate themselves from other groups. For me, genuine cuddling is very difficult. As a result, I tend to come from the vantage point that social skills are very difficult when this may not be the case for all message receivers.

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Living with Schizophrenia in Oakland: Esteban Santiago-Ruiz

January 7, 2017: I sit stunned in the wake of the tragedy of yesterday’s Fort Lauderdale shooting. As statements appear in the press that insinuate that these evil acts need to be avenged, I grieve for the senseless loss of life.  I grieve and I also wonder if anyone cares to understand the dilemmas that people like Esteban Santiago-Ruiz face. Having just endured another holiday season as a mad person, I am reminded of the importance of giving social scapegoats a space to celebrate their otherness. As a licensed psychotherapist, I create safe places where the untold story can be heard. I know that a state of victimhood can be transformed to a celebration. I see it happen every day. It helps me exponentially.

Having caught a fever, I spent Christmas day in bed in victim mode, reflecting on the way I feel scapegoated. Instead of working through the pain like usual, I lay incapacitated, overcome. I thought of my project design that could bring specialized groups into the county service system. Turns out eighteen months of pro bono work only further smeared my reputation. I not only am left unnoticed, I know there are rumors based on past politics and current ones that I can do nothing about. I reflected how, when I recently shared these ideas in a survivor work group, I only felt further marginalized. This hurt, as did the fact that my award winning memoir isn’t selling.

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Living with Schizophrenia in Oakland: Posted on bayart.org, December 10, 2016

Through a sea of tissues and a hacking cough, I scan Netflix pressing that stubborn button on my Roku remote multiple times. I read the summations of shows for several minutes until I come across a documentary called, the 13th. Finally, I settle in. Resting is not an easy thing to do with that constant sense of urgency I live with.

I don’t know what’s worse these days: dragging through a pre-holiday week on the outpatient psychiatric unit on Dayquil; or listening to the radio talk about impending loss as the new cabinet of Trump supporters get selected.

A cross town slog into East Oakland after work on the unit one night last week revealed once again that the streets are ever-burgeoning with homeless, some of whom I know intimately. In each car encampment, I saw a distinctive cultural story that needs to be heard.

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