I did a little double take on this man standing before me. I couldn’t understand how when he lived such a deprived, sunburned, and sweaty existence that he could respond to this young, privileged and nervous person in front of him by being supportive. I didn’t sense that he was doing this to butter me up.
I recall making an internal commitment to him on that day. Hence started my desire to learn about and heal schizophrenia. I felt I owed that man something for his kindness.
By the time I got my degree so that I was promoted to a case management position, I found it a wonderful opportunity to get a picture of what life was like for the schizophrenic clients on the streets, in the boarding homes, away from the clinic. It was not a pretty picture, but I reasoned that now I could provide a service to earn their rapport. Then, I could use my little theoretically informed counseling skills to get at their truth. In many ways, I did not actually know what to say other than, “Did you take your medication?” However, I was happy with the arrangement.
Meanwhile, in my personal life, I got tired of being in and around my hometown. Sure, I went to school in a ghetto and had built up the rental history to take up a lease on a suburban flophouse with some acquaintances. Sure I fled that shelled-out place into a pad in the city. But, somehow this plus getting dumped in all the female relationships that I barely managed to make wasn’t enough for me.
I switched coasts and accepted underemployment in a new city where I could pick up where I left off at understanding schizophrenia. Here, I really wasn’t expected to do therapy as I monitored well-tended housing for clusters of mentally ill adults, but I did anyway. My supervisor, whose standard care I often challenged, found me difficult. My better than average handwriting was targeted as being a problem.
It’s true the clients seemed to have it pretty good in the west coast city. The facilities I monitored were much nicer than the ghetto ones back east. But within six months, after another heartache, I took a promotion in a pilot program setting up services in a notorious section eight housing authority complex.
I must admit as a kid who grew up in a private school, the streets and the ghetto, much like schizophrenia, had always been a lure for me. I love other cultures. I set up shop in the notorious section 8 housing project. I got some real exposure to what people who end up homeless and destitute due to schizophrenia deal with. Let me tell you, it wasn’t a very safe holding environment.
Six months in, I was talking with a resident I trusted very dearly. He had once told me who the for-real drug kingpin was about the complex. He paused a minute and said, “You know, one time we had a person like you work for us before, someone who really cared and fought for the residents. That person, ended up losing his job and having to come and live with the residents. I just don’t want that to happen to you.
I looked at this schizophrenic resident who worked a minimum wage job. It was true that since I had leaked stories to the media about some of the suspicious violence and fear that the residents were subjected to, that I had been picking up on random threats and feeling very unsafe.
Within a week, things escalated into my personal life. I got threated by someone who really did have a nefarious past. I started getting interesting takes on mainstream movies.
I tried to get to the Canadian border to seek asylum and ended up getting separated from my car. Eventually I surrendered to police in a ditch while ascending a mountain pass. They took me to State Hospital where I resided in barracks three months. Just when I was starting to come to terms with this ridiculous black market sea of poverty I was cast into, I was transferred to the most chronic ward where the overcrowded conditions were comparable to the worst of what I’d ever seen.
I spent two years after that trying to overcome homelessness and underemployment in a full-blown psychotic episode.
What I had learned about schizophrenia at that point was that most people had absolutely no interest in it. As a mental health patient, I found that no one was any longer interested in my story or what I had to say. The five-word phrase, I had been trained to use, “Tell me more about that!” was replaced with a famous five-word question: “Did you take your medication?” Nobody believed a word I said no matter how real I was being. And no longer did anyone care what I was subjected to.
For example, during my “psychosis” I believed the mob or the government was following me. The only job I could find despite hundreds of applications and two relocations was at an Italian Delicatessen, I had needed to bike twenty miles and catch a two-hour long train ride, daily. Nobody had cared that I was in back pain through the all of it. I was still the last to go on break. I was blamed and framed for anything that went wrong. There were constant threats against my job. There had been no acknowledgment for my efforts, only complaints about my service from upper-class people, and punk-ass ridicule from my teenage co-workers. Finally, I agreed to take medication.
How was I to transition from being treated like that—from being locked outside the ward mental patient in sub-zero temperatures freezing like the cow patties in the field while the staff returned late from their lazy lunch break—to being a fully entitled therapist? Finally, I could understand why someone who was even a little bit interested in what it meant to be a schizophrenic was a good worker.
To be honest I knew I was not a good worker for a little while. I was just barely-making-it, overworked, highly insecure, and protecting myself as I worked two jobs and an internship with a half a day off every other week. When I earned my way back to working with people individually, I was a little better at getting rapport and experimenting with helping out with schizophrenia. I heard a lot of, “Oh you’re good,” comments. At least I knew enough not to approve of the word schizophrenia. It took me six years and a number of side jobs to get my license and be fully grounded in a staff position.
Throughout the training for my license, I had not disclosed to anyone what I had been through. Always too busy to make friends, most colleagues tended to think I was younger than my stated age, and perhaps a little over-anxious about making rent.
I soon found among licensed marriage and family therapists that most presumed that there was not much value in treating individuals who had schizophrenia. Some individuals forced into working with them characterized them as just lazy and unresponsive to instructions. Those who picked up on my insecurity said maybe there was a future for me in providing “just” case management services. I often heard it said, that it was debatable whether there was effective treatment. Sitting in licensure lectures, we were taught that in coming across a person with “psychosis,” the standard of care was to hospitalize and refer to programs.
When I passed those sucker licensure tests in spite of my learning disabilities, I was tired of leading groups full of good people who had experienced “psychosis,” and not talking about what was really going on. I decided to get to work creating my own treatment strategies for schizophrenia. I had heard about the hearing voices network movement in Europe and decided to create a curriculum that deconstructed “psychosis,” and emphasized recovery skills. I took WRAP training, and finally started to experiment using my own story with all its minute details.
Learning how to navigate the profession as an identified schizophrenic has been full of challenges. A co-worker found a copy of my curriculum, and turned it over to the manager with grave concerns. Another left insulting cartoons on my desk. I had occasion to hear myself being referred to as, “Crazy Tim!” I ignored these and persisted. Eventually, I took a job where I was identified for two years, advocating for change in the county. My name and unhealable condition spread like wild fire throughout the county. In team meetings, I was accused of being against medications. One person who defended me end up getting written up and eventually fired. When I returned to my hospital job, my primary boss, who, thank god, has been supportive of me throughout, once let me know that when I went over to the county’s ward to run groups, that I had little red dots following me on my forehead.
My groups, my popularity among people who I help, and my own little paranoid vigilance has helped me survive the past nine years and thoroughly develop my own eclectic theoretical approach towards helping who I prefer to call message receivers in group and individual settings.
Things have gotten a lot less hostile for me at work. I now know what to do to help out that vagabond homeless man I met two decades ago. Additionally, I wrote a grant a proved that message receivers could be paid as outreach workers, tell their story to providers, and transition to being group leaders, and mental health professionals while they attracted and motivated individuals who might not have otherwise been motivated. I serve on the board of the local hearing voices network.
I believe uniquely talented specialists are needed. We need outreach specialists with lived experience who can meet sufferers wherever they are: at home, on the streets, in the board and care homes. They can deliver messages of hope and referrals to bolster a system of self-support, like the hearing voices network. And still for others who need it, referrals to therapy specialists, who might have the training that hasn’t yet penetrated academia programs. Perhaps, one day, other interested parties can learn to become a specialist in work with “psychosis” without having to face quite as much pain. It is a very sorely needed specialty!