Tim Dreby

@clyde-dee | contributor
I am the award-winning author of, Fighting for Freedom in America: Memoir of a "Schizophrenia" and Mainstream Cultural Delusions. I am also a psychotherapist in private practice who also works in an inner-city context. One day I hope to help revolutionize treatment for “psychosis” across diagnostic divides
Jane Alexandra

What I'd Like You to Know About Living With Schizophrenia

I am 35 years old. I have two university degrees in education and am working on a third in psychology. I have a regular, somewhat demanding job that most of the time I like to think I am pretty good at. I like to sing, to paint, to write and to devour books like words are going out of fashion. I am in a steady relationship with a wonderful man, have amazing friends and family, and generally love the life I have created for myself. I also carry a secret. It’s three years old, but not a toddler, though there are occasionally invisible tantrums involved. It requires constant monitoring and management of medication, but I have to see a psychiatrist to do this, not a GP. It sometimes lands me in hospital, but can’t be fixed on an operating table or with IV fluids. I am schizophrenic. As far as I’m aware, when you tell people you have a physical illness or a dodgy back, they tend to accept that those things don’t change who you are as a person, or make you a liability. When you tell people you have a mental illness , the reactions sometimes – not always – range from disbelief (“You seem so normal!”) to mistrust (“Does the TV send you messages?”) to avoidance (“You probably wouldn’t have wanted to come to that party anyway.”). You become an unknown entity, someone to be wary of. A time bomb. When I am well, all the things I told you about myself are true. When I’m not, they are still true, but occasionally they get buried the further I fall into acute illness. Sometimes I can’t work, or follow the plot of a book, and all the colors on my palette start to feel like different shades of black. I have learned over the last three years not only to (mostly) accept it, but to control it, and I am incredibly lucky to have a great support network to help me do this. For those who are caring for, or know someone with schizophrenia or another illness with psychosis, or just want to understand more about what it feels like, here are some things I’d like you to understand about my experience w ith schizophrenia (that I can’t always say out loud)… 1. I can’t just snap out of it, or ignore it. This can be super frustrating to hear. Sometimes, I describe my (occasional) reality as having the TV and the radio on loud at the same time, while trying to read a book and have an intense conversation. It works as a descriptive )and you should try it sometime), but keep in mind that once you’re done trying it, you can remove the distractions with the flick of a switch and go on with your day. For me, it isn’t that easy. 2. There isn’t always a reason for a bad day. Schizophrenia is a chemical imbalance. Yes, symptoms are often triggered by external events like not getting enough sleep, stress or big life changes. But, then there are other days when I wake up and it’s noisy in my head for no reason I can pinpoint. This is frustrating enough, and even more so when you ask me what’s wrong… but what you really mean is why are things going wrong. You mean well, and you want something you can point to as a trigger and offer advice on, but sometimes there just isn’t one. It doesn’t mean my experience is any less real, or less hard. 3. There are two types of symptoms in schizophrenia (and other mental illnesses). They are: positive and negative. And you’re probably thinking “well, positive sounds OK!” Positive symptoms add something to my life, but it’s not like winning the lottery or getting a free coffee. It adds voices, or whistles, or static-like noise. Sometimes I see shapes and shadows that vanish when I look more closely. Occasionally, people’s faces change into something frightening, or I hear a different set of words than what’s coming out of their mouths. Negative symptoms are easier to understand: it’s losing things from your life, like the ability to concentrate, or motivate yourself, or get dressed. For me, the positive usually happens first. It makes me doubt what is real, what I see, what you say. It chips away at all the stuff that makes me me. Imagine traveling somewhere you don’t speak the language. Your senses are in overload trying to absorb all the unfamiliar things. You can’t read the street signs, and when people approach you, you don’t know whether they are offering help or chastising you. Now, imagine you’re in a place you know well, but everything above applies and suddenly nothing is familiar or safe. It. Sucks. 4. If I bail on stuff, it’s not a reflection on you. I am constantly at war between wanting to participate in life and wanting to run away. When things are noisy in my head, everything gets so much harder. I can hide it from you for a while, but it’s like walking in dry sand: the longer you try, the harder it gets to keep moving forward. I’m pretty good at “performing,” and it might seem like everything is OK, but inside, I’m screaming. The louder it is in my head, the more energy it takes to pretend it’s quiet. It’s exhausting, and sometimes I just can’t stay after dinner for coffee, or show up at all. It’s not because you’re bad company, or that you’ve done something wrong. I’m just too tired, and maybe I don’t want to perform (because it feels like lying) but I also can’t risk telling you the truth. Also, see #5 and #6. 5. I don’t mean to seem ungrateful or difficult. It is a struggle to know sometimes how to explain where I’m at, and what to tell you when you ask how you can help. Something that helps one day might not help the next, and I don’t know how to tell you that without confusing the shit out of you or alienating you. It is easier to either deny I’m having a bad day at all, or accept whatever you’re offering without telling you it isn’t what I need today. Because you are somehow still here, offering your friendship and support, and that means so much to me. I know you mean well, and you are trying so hard to help, and I don’t want to make you feel bad. And tomorrow, or the next day, or in a week, I might want that hug, or to talk it through, or to go for a walk. I don’t want to burn any bridges. 6. I do trust you, but I also want to protect you. Sometimes, while we are talking, someone in my head is telling me that if I confide in you, one of us will get hurt, or injured, and it will be my fault. Sometimes they say you are out to get me, or just pretending to care. On a good day, I know you’re not pretending and that you genuinely want to help, but they are very persuasive and I want to protect you. It might seem like I’m dodging your questions or actively pushing you away, and I get that it’s frustrating for you. I feel incredibly guilty a lot of the time about being “too hard to deal with” or being a burden on the people I love. That means I will usually try to spare you from the finer details. When things aren’t great in my head, I hurt and I don’t want you to hurt too. 7. There are no wonder drugs and no quick fixes. Medication is a key part of treatment, but most antipsychotic drugs have side effects and there are a lot of different types and combinations. Some people find one that works for them fairly quickly, while others — myself included — have to chop and change to find the right drugs and doses. I don’t like taking meds, but I have accepted I need them. Regular contact with a therapist is another key factor, but there are heaps of different approaches, and you have to find the right person (or team) for you, then build a therapeutic relationship with them. It’s sort of like dating — you wouldn’t go on multiple dates with someone without feeling some kind of connection developing. Unfortunately, there is no right or left swipe system for finding a suitable (and available) psych, and they barely ever buy you a drink before you take your metaphorical clothes off. 8. The system for getting help is pretty broken, and mental illness generally gets a bad rap. When I first started experiencing symptoms, I was given a number of different diagnoses from depression to bipolar disorder to borderline personality disorder (BPD) . One professional saw me for less than seven minutes, at 5:30 a.m. after a night of no sleep in an ER cubicle on my own (and ankle deep in what I recognize now as acute psychosis ) and promptly told me I was making it all up for attention, then sent me home. In the early days, medical staff told me (or wrote in my notes while I read them upside down) that I had “low resilience,” “low intelligence” and was “non-compliant” and “hysterical.” Doesn’t exactly fill a person with confidence. I also spent some time as an inpatient in a public mental health facility. It was decidedly less than fun. I am incredibly lucky to have found a way out of an overloaded and underfunded public system. The people you hear about on the news, the ones we are taught to fear or ignore: they are not the face of mental illness . They are usually the exceptions to the rule. 9. Schizophrenia is for life, but it doesn’t have to be a life sentence. It’s been three years now since I was diagnosed. It hasn’t always been easy, but it’s not completely crap either. I have learned a lot of things about myself, met some pretty awesome people who have labels of their own, and I have some absolutely amazing people in my corner. The last couple of weeks have been full-on, and at times it’s been a challenge to keep old mate Boris in the background. One of those absolutely amazing people I spoke of earlier pointed out to me today that 18 months ago, I would have probably been admitted to hospital by now. Do not pass go, do not collect $200. Instead, I am still in control, being (mostly) sensible and working through it, even though that means hard conversations and tough decisions. Yesterday, I sat down thinking I wanted to write something about what it feels like to be unwell, and I couldn’t organize my thoughts well enough to explain. Today I can. Whatever tomorrow brings… bring it on. A version of this article was previously published on mentalhealthtalk.info. Follow this journey on the author’s blog.

Community Voices
Tim Dreby

Helping Your Loved One With Schizophrenia: an Alternative Approach

“How many parents out there would rather learn their child had developed a life-threatening illness, than hear their child carries a diagnosis of schizophrenia?” Historically burned-out doctors may be known to make such negative statements about schizophrenia at the time of diagnosis. If they end up being wrong, they simply re-diagnose the person with bipolar; but still their comment happened. Perhaps it challenged you to devalue your loved one. Well, I am a mental health professional, and nothing excites me more than meeting someone else who has experiences associated with schizophrenia. I instantly know aspects of what they have gone through. It makes them a potential friend to me. Additionally, I come equipped with handfuls of tools that I think may be helpful for them. I am additionally curious to see what they might teach me about myself. Strange thing is, I am not alone in my world view. Maybe you have heard of the international movement called the Hearing Voices Network? Originating from psychiatrists in the Netherlands named Marius Romme and Sandra Escher, this movement seeks to normalize one of the many experiences associated with schizophrenia. The movement points out that one in 10 people hear voices and that not everyone needs to be institutionalized in the mental health system as a result. In fact, the movement has proved that people who have been institutionalized for years turn out to be great leaders and advocates. Stereotypes You Are Up Against Maybe it is not fair to blame anyone for a negative response to the above dilemma because of all the negative stereotypes associated with the schizophrenia word. Many people think of a homeless person who is out fighting for their survival on the streets, posturing or bearing a cardboard sign beneath the underpass. Those a little more informed of the norms may think of a crowded board and care home with nothing to do but to smoke and drink coffee. Still others in some states imagine a lengthy state hospital stay or transitions through hospital recidivism and homeless shelters. Of course, there will be those who think of shows they’ve seen like “Criminal Minds” or “The Guardian.” They may conjure images of mass shooting events that are blasted through the media quicker than our very apparent national homeless crisis. Of course, as a parent or loved one there is the stereotype of the fresh-out-of-school social workers supervised by burned out administrators who dehumanizes their patients the minute their backs are turned. Perhaps it is hard to watch this happen and easier just to stay out of it. Perhaps some of you will shield your kids from this reality and try to take care of them on your own. Meanwhile, much of the public feels that we as a nation were kinder and gentler during industrial times when we provided mental institutions. We all know stereotypes are bad, but still they exist. When Stereotypes Become Real I can relate. I worked in mental health and greatly despised the life I saw many of my clients enduring. I respected my supervisors, but it never felt right. When I advanced to be able to work independently, I was so successful at advocating for better care, that it is part of what landed me in a state hospital myself and discharged to the streets. “You see, Tim,” I was told in my second meeting with my psychiatrist two months into my state hospital stay, “One time we had someone come in here and say they were being followed by the FBI and we found out they were in fact being followed. They hadn’t done much, but they were under investigation.” Was she really referencing me? I had tipped the press off to murder and mayhem on several occasions. Yes, many of those stigmatized scenes are real, but they are only a small piece of the picture. Indeed, I was willing to call myself autistic long before I was willing to call myself the schizophrenic that I am. It took me 15 years of recovery before I started to embrace the “ugly” word because the stereotypes were so threatening to me. Hard Decisions You Face Such stereotypes may bring really hard decisions. Your relationship with your loved one, the extent to which you perceive justice in social institutions and your own stigma about mental health challenges may influence your take on what you are hearing. Remember that even though your loved one is in an emergency state potentially flailing around with conspiracy ideas and opinions about you, they know you well enough to know how you will respond. They may sense your response and resent it. Historical problems in the relationship may become exacerbated exponentially. For a minority, there is the potential of real violence while your loved one remains in emergency state. How are you to respond if someone you love suddenly sees you as the root of all evil? And what will your friends say? How may they judge your parenting or partnership?  How do you handle privacy needs? How have you done this throughout their lives up to this point? Do your actions further shame your loved one? How much credence do you put into the medical diagnosis? What have you heard about the word: recovery? Does your loved one deserve the best treatment, or do they need to be treated fairly, just like everyone else? What is the “best” treatment? What kind of money and resources do you have to play with? How willing are you to support someone who isn’t behaving “appropriately”? How much do you value your own safety verses theirs? Support for You Providers will generally refer you to the power structure of the National Alliance on Mental Illness (NAMI) for support and you will mingle with others who have faced these dilemmas for years. If you are even willing to stay involved, you can use these groups to figure the most humane decisions to make. Often, with this referral comes a clear concept of a “chemical imbalance” to which your loved one is victim. Suddenly you are surrounded by volunteers who give their time and expect you to do the same and support their views. Accepting the power of the illness, setting behavioral boundaries, imposing medications and accepting dilapidated housing options may be the standard with which you are encouraged to comply. Indeed, people and families are very different as are regions and NAMI boards. A variety of things can be helpful. What It Feels Like to Find Meaning in Stereotypes When I was going through dehumanizing stereotypical experiences, I only felt victimized. I had always thought I was critical of dehumanizing practices; but still, I was shocked! Oh, how much worse that horrific, maddening and dehumanizing treatment seems when you are in an emergency state. No one believed a word I said. I didn’t think I would ever be glad for enduring it. I could see no value to losing all my social standing and being incarcerated in impoverished circumstances. I feared for my future. Now 18 years later, I use all those degrading experiences which lasted two years after I was discharged to the streets to convince patients I work with that I know what they are talking about. I still feel overwhelmed when I think of what I went through, but I now can say I went through them for a reason. I often say that if I had known that my suffering could lead to a lifetime of meaningful work, it wouldn’t have been so terrorizing. Instead of waking up in night terrors, or having urinated in my bed, I could have gone through what I went through more gracefully. And I wouldn’t have been as hard to manage for all the low wage work community that surrounded me. I mean any innocent child who saw me coming would run the other way. My negative energy was quite off-putting. You May Be Needed to Make It Possible Meanwhile, my father had made his opinion known, he felt incarceration and mental health warehousing would be as good as it would get for me. Just like the treatment system at Montana State Hospital which was set up to help me adjust to poverty and disempowerment, it seemed like deep down he wanted to be right about his negative prediction. Still, he gave me a year of economic support to get it together. Though I could have got food stamps, my parents did help! And I still call them weekly. The memory of them being so concerned they were just enabling me while I was biking 20 miles a day to work a 40-hour week still burns. Thank god it worked! I was able to get back to my career. Can you imagine how great I feel with a career in mental health, a wife, a dog and a home? Many Others Can Do It Many others of us who struggle can do a lot of healing and earning of social empowerment by helping each other out. We can do this by using our experiences to reach others who may appear unreachable to outsiders. However, we also need to be paid for our livelihood. Not only have I been blessed with the opportunity to find meaning from my suffering, I have seen others do it as well. I have helped employ a team of four to use their experiences associated with psychosis to help others. They outreached and learned to run groups in agencies. What Is Missing for Schizophrenics in America? Perhaps not everyone who struggles with experiences associated with schizophrenia naturally takes to becoming a therapist the way I have, but the mental health system really lacks a vision for sustainable roles for us schizophrenics to occupy. And I believe the first step towards creating such roles involves seeing schizophrenia as a culture rather than an illness. In other countries the hearing voices movement has taken hold, healed many and has given people valuable roles. The premise is simple: let people who hear voices from different walks of life get together and share their experiences in un-monitored support groups. Wow, so much can come from that! For the last 18 years I have run such support groups as a professional who openly reflects on my lived experience with schizophrenia. Like many hearing voices groups, the focus of my groups extends beyond simply hearing voices. I like to include and normalize all kinds of experiences that lead people to alternative thoughts about the way the world works. I think these kinds of support groups help direct schizophrenics to care about the experiences of their brethren. Mutual learning and coping strategies result. Hence, letting schizophrenics acculturate and be schizophrenics is a marvelous step in the right direction. The Need for a Living Wage However, in my opinion, support groups are just a start to what is needed to give the culture a meaningful role. In Oakland, California, services that outreach to homeless encampments, board and care homes, agencies and shelters can invite institutionalized individuals out to support groups. Many of the people I serve off the streets of Oakland can greatly benefit from having visitors who come and bring the support groups to them in their board and care home. Then, they might then learn to come out to groups in the community and get around some of the obstacles that keep them isolated. An organization as such can significantly train and employ schizophrenics to develop a variety of skills. It can give them a chance to make meaning from the stereotypes through which they may have lived or to which they feared, thus a training/outreach program can help schizophrenics move on to better and better jobs. How You Can Help Your Loved Ones Realize This Vision? I think it is important to end the medicalized view of schizophrenia. Updated research is defining psychosis across diagnostic divides as more of a syndrome or even a neurodevelopmental disorder like autism or dyslexia. This really supports the work of the Hearing Voices Network which contends that voices and other experience do have value and carry real meaning that must be addressed for healing and survival. Believe me, there can be complex underlying issues to address. Thus, as you live schizophrenic stereotypes through your loved one, remember that they may be transformed into your child’s mission in life. You cannot possibly be responsible for all the meanness in the system, but you can take updated research and success stories from the Hearing Voices Movement to your NAMI meetings. You can find ways to support employment for schizophrenics through empowering organizations like the one I proposed above. I ran such a program for a year and a half until the temporary funding was done. I know it can be done. Successful Schizophrenics There are many things that can help schizophrenics find roles that utilize their passions and interests. As a culture, schizophrenics are historically oppressed like heretics in western society. However, if we are to explore many traditional societies, we may find many of the skills that are labeled as an illness to be shamanic and spiritual. There are many wise traditions to explore in creating solutions. I personally do not throw the tradition of psychiatry down the toilet. I myself utilize medication and work with others who do as well. I also admire and champion people who do not. However, we must offer solutions that help heal the localized abuses that have occurred within the medicalized system. One solution does not fit all. Ultimately, I still wouldn’t mind using another word besides schizophrenia. I call my groups and my program special messages.

Tim Dreby

Differing Opinions About Using Medication to Mangage Psychosis

The issue of whether to take medication or not can be a difficult one. While medication may work well for some, it may do little for others. This syncs with the fact that experiences associated with psychosis are vast and varied. People who experience it are very diverse, and causation remains nebulous. I believe that causation for each person is a constellation of a series of modalities. I have witnessed how comparing causation theories becomes the spice of life in a psychosis support group. I find support groups for people who experience what is labeled as psychosis to be full of cultural learning that can result in powerful growth and wisdom. As someone who’s been in recovery for 15 years, I have also witnessed the issue of medication to be politically divisive amongst message receivers or people who experience psychosis. Personally, I am starting to see it more as an element of cultural diversity in which differences can make the support groups I run vibrant and spectacular. I believe I have a moderate view on this topic, which means it can be hard not to feel under attack in differing circles. My hope in this article is to provide perspectives to help people make their own decision about medication and work together regardless of their views and life experience. The Initial Influence of Provider-Folk I believe that early on, provider-folk often present an overly biased view about the relevance of medication treatment. Those famous five words echo down the ward’s corridor and indelibly into the recipient’s life: “Did you take your medication?” Often on a ward, family members who support medication and throw their weight around to support the mission are viewed as good supporters whether the subject responds well to them or not. I played the obedient client for seven years and took my medication without complaining about side effects. If things weren’t working, I never thought I was getting bad therapy or needed to learn better coping skills, I just thought I needed to change my medication. The therapist I had and the social workers I worked around rarely reflected on their own behavior. Mostly, it seemed, just like it seemed in my family of origin, countertransference and elite defensiveness were the norm. As I started my career working on a social work team throughout this experience, I can say that we weren’t trained to write reflective notes, we were trained to cover our ass. I mirrored this hard-headedness as a professional, feeling like I had to convey that I had my stuff together. I now see this as the dominant normal culture oppressing people who are different without taking any responsibility for their role in the poor outcome. Medication compliance was expected and then blamed when there was lack of success. Then, there was that term “medication noncompliance” and all blame landed squarely on the client or minority culture. “I don’t think they’re taking their medication,” becomes the popular thing for the benevolent staff person to say. For a long time I internalized this damaging mentality, feeling it was the bigger thing to do. I remained chronically depressed. The Lack of Training I believe the premiere reason for the medication bias in treatment is that providers rarely get trained on how to work well with individuals who experience psychosis. They are expected to use their education to figure it all on their own. And much of what they read is full of hopeless eugenic myths that are the result of institutional stigma. People who have psychosis are most often believed to be dangerous, child-like or weak, according to stigma expert Patrick Corrigan. With these hopelessly negative projections cast upon them, message receivers or persons with psychosis are rarely seen as though they can become stronger and wiser from the hardships they are experiencing. The Medication-Free Camp I believe people who are against medication are right about a lot of things. We really don’t understand the health problems that can arise from taking medications. From what I’ve seen, the FDA has historically been a poor judge of long-term health effects of the various chemical cocktails. The 25-year discrepancy in the life expectancy may in fact have something to do with medication. Moreover, clearly medications can be used in such detrimental ways when they are forced or overused. People who are beat down by the streets and hospital’s revolving door may struggle for years until some learn to internalize eugenics. Perhaps their unspoken interpretations of their experiences are elaborate, torturous and reflect intricate elements of oppressive realities. Or perhaps they may just trust the money-making system in which they medicate their life and activities away in warehousing. The pharmaceutical industry really does what it can to corrupt doctors and promote their product. The bias that pervades in psychiatric wards and treatment centers is one in which the majority reinforce ugly lies. There is a lot of bad things to gripe about when it comes to medication. The Seeds of Division Currently there is an anti-psychiatry backlash for a very good reason that I support. However, recall that in my mind the use of medication reflects diversity issues. What happens in my mind is that some people who have been able to thrive medication-free believe what works for them can work for everyone. This can make the issue divisive for some people. For example, I have found that people who have been institutionalized and who have lacked adequate housing in Oakland, California where I work can feel very separated from some peers who have triumphed and been able to survive medication-free. What can result is a sense of an underclass that is looked down upon. I certainly went through a stage where I forgot that I have privileges that helped me survive that others might not have. I believed I could heal everybody. It’s arguable that this is a stage that some of us peer workers may go through. But, after making these mistakes, I believe becoming political about those feelings and fighting for them can divide and exclude. What I have come to believe after leading thousands of groups that explore psychosis is that there is a higher amount of cultural diversity in the people who experience psychosis than some survivors like me tend to anticipate. I think it’s easy for the recovered person to forget or disregard the privileges they have that enabled them to recover. Privileges come in all forms and a person who has overcome psychosis has had to use many of them optimally to escape. Still, on bad days I sense an ethos among some consumers and feel like I am looked down upon by others because I have not joined the upper echelons of wellness and gone off medications. And yet, I am different from many who are successfully medication-free. I navigate with a unique set of circumstances. And so, I have grown to believe that it is a divisive presumption to believe that everyone is better off without medication. There are a few presumptions that seem to go with automatic advocating for medication withdrawal that I want to challenge. The first is that if I could do it, then you could too. The second is that everyone can do it and it would be wrong to think otherwise. Issues like relationship to the means of production, availability of a welfare state, family/cultural support, homelessness, race, gender, job history, sexual orientation, educational prestige level, learning disabilities and incarceration histories are examples of factors that individuals navigate. These impact an individuals’ decision to take medication and may challenge the above presumptions, at least for some of us. Supporting Those in Repressive Settings Another thing I know well is that psychosis and the mental health system can put people in some bad incarcerated, warehouse circumstances. When I was in a bad situation, I thought it couldn’t possibly have been any worse. But since I have recovered, I have learned that I had oh so many privileges that other people don’t often get. And I think this may be true for some others who are successful. If a person lives in the most repressive of conditions, I believe they may need medication to survive it. It might be naïve to think that anyone can go off their medications at any time. It takes tremendous subservience to survive some conglomerations of oppression. For example, one could say that people shouldn’t have to live that way, but so many do have to live that way. Some people have struggled for decades and still want to improve their lives. In many cases, a true supporter needs to appreciate the nature of the repressive circumstance first. Then, they may even need to appreciate the time it takes to transition to better situations before they make a three-minute assessment and lean on someone to go medication-free. In fact, why lean on anybody ever? People have a right to honor their experiences in any way they chose. The healthy thing to do in most contexts is to respect each other’s differences and work together. The Reality of Counterintelligence Efforts to Divide Us While we may get that sense of togetherness when we are at conferences, when we survive and start working, real counter-intelligence efforts, egos, slights and slanders may turn us against each other. I believe this can function to maintain the repression of our brethren. It is not hard to see the way mental health recovery fails to trickle down when mental health organizations and powerhouses battle with each other politically. Yes, I think this is part of the master plan the government has that minimizes the power of rebellion in the United Sates where series of clandestine Libertarian and social Darwinist economists use their secretsocieties to currently rule over democracy. Yes, I think the mainstream view of mental illness has a lot of money and power behind it. Yes, I can function and I still believe real, undemocratic counterintelligence is a factor! When we allow it to make us attack people with alternative beliefs and experiences, we divide the culture. Striving to Be Better Than Some Provider-Folk I believe that when we throw our opinion around without careful assessment, we run the risk of being just like the unhelpful amongst the provider-folk. When we work in the system, we are going to do harm for a portion of the people we serve if we mindlessly promote only what has worked for us. We need to be mindful that not everyone is going to be happy with us. We need to reflect, explore, be vulnerable and work with those who are hurt by us. There may be an incredible story there. Peer counselor survivors who understand psychosis are needed on service teams as specialists. As survivors we must agree to disagree and be culturally competent for each other so as not to just become part of the machine. If we are not careful, counterintelligence agents or messages well may have us divided over issues of medication and other cultural factors fighting one another from other regions just like they have with other social movements. If we do not cross diversity divides and let our egos rear their ugly heads, we risk becoming part of the problem. We don’t need a stratified system with subsectors that don’t deal with each other. That is what we have now. We need emotional regulation and an openness to working together and manners that exceed those of the provider-folk to prevent division. Without our voice, the oppressed may remain oppressed. Conclusion I hope in my journey to be able to go medication-free sometime when I retire. I am glad to hear that some people can do it and maintain strong recoveries. I have no problems if they promote medication-free alternatives, make films and write websites and books to give me information. In fact, I am grateful for that. I work in a stratified system and take money from my brothers and sisters to pay a mortgage. I believe my brothers and sisters could do so much better if I shared with them rather than provide them with nickel and dime advice amidst their repressive warehousing. Still, many people I work with recover and lead dignified lives. If democracy comes back to our country, and the rich get taxed at the level that the poor do, we have some mechanisms in place to really tug on and make changes. I think it is the “craziness” of the disparity in the hacienda of the mental health industry that I depend on to survive that keeps me on medication. Unfortunately, using medication made a major difference for me. I tried for two years to manage without medication. I couldn’t get out of the homelessness and underemployment that kept me down. I wanted to use my strengths towards something that could provide me a better life. The depravation and abuse were hard. I never worked so hard and thanklessly. Finally, I returned to the field of mental health to survive and try to use my experiences to make it better. Many could argue righteously that that makes me part of the problem. I know we could do better for each other someday. But I believe working together and transforming the system is possible even if we don’t have what European countries have. Every day, I see it happen in group therapy for psychosis.

Community Voices

Disassociation Beneath the Suds and Psychiatric Labels

“I have heard real stories,” said my female therapist, “of men doing graphic and horrible things to women. I don’t think based on what you just told me, there is any justification for any accusation whatsoever. I think you have been saying a lot of hurtful things.”

I figured my mother who was paying for these forced sessions put the shrink up to this confrontation. I never did bring the issue of sexual abuse up.

It is true I have had an ongoing suspicion that I was sexually abused. Particularly when locked up for extended periods of time for an eating disorder, and most recently for #Schizophrenia, my suspicion that my suffering had sexual abuse behind it escalated.

It was also true that in the state hospital I had just gotten out of, I had made rash accusations.

I can only recall making the accusation against my mother to my best college friend who had a nefarious past of drug dealing and a grandiose mafioso mentality while manic. When I confided in him that I had alerted the press in a section eight housing authority complex, he threatened me. With this feeling I had been led into this role I was playing as a whistleblower all along, I’d fled towards Canada until the police intercepted me.

From the phone in the State Hospital, without knowing his level of responsibility

or the fact that I was there, I told him what had transpired between myself and my mother in a provocative manner. I told him he was lucky to have a family who cared about him when he had faced going to a state hospital for #BipolarDisorder. I’d also said, “Friends don’t threaten each other!”

“I think it is time for me to visit your mother,” my friend said.

Scared for my mother, I called to warn her.

“You shouldn’t make such accusations about Joe being in the mafia,” my mother said, “He really does care about you!”

When I later asked my Mom where she had heard about my provocative accusation, she told me she forgot.

At the time the female therapist confronted me, I could not remember the real incidents of sexual abuse that I experienced. I just stopped confiding in her.

Initially, shit just happened when I was a teen, built up and I just distracted from the pain through starvation. The incident with my Mom was just one of many. People like me who don’t realize that their suffering is due to trauma are often unable to discern abuse from retraumatization. They may attract a long list of psychiatric diagnoses. They may feel abused a gazillion times and it becomes hard to see how any community might come to the rescue.

What I have come to believe is that if a person has experiences of disassociation, there is the possibility of incidents of forgotten events.

An example of a disassociation I experienced was when I was alone scouting a trail. I stepped within six inches of a rattlesnake, a childhood obsession of mine. The rattle made me run even though I knew better. Then I became aware that I lost track of time. Finally, one of my peers on the Outward-Bound course came and found me staring off into space and I grounded myself.

Also, after being teargassed at the WTO Protest in 1999, and pepper sprayed directly in the eye, I took a walk and lost track of where I was and what I was doing. Suddenly, I realized I walked past my destination and had been out.

Much later, after the state hospital incident, I disassociated in front of my nephew

when he was a bathing cherub in a tub in front of me, I was going outside my body but didn’t leave all the way. This had been happening to me on a few occasions when I was working seven days a week trying to get back on my feet financially.

In fact, when I did write about this occasion, during an editing session I suddenly I got a vague flash of being molested in a bathtub. The girl, my best friend’s sister, was only one year older. I would later remember that she ordered me to take my clothes of and get in the tub with her while our parents were out walking.

I didn’t remember my disassociated response, I only remembered the hands disappearing beneath the suds. There is a story that I ate a moth ball thinking it was a marshmallow necessitating poison control to be contacted. I was a little old to make such a silly mistake. It’s true I could be wrong, but I connect that action to my response to the tub incident. I do believe that around that time I started bathing in my trunks.

I do recall becoming very angry at my best friends’ sister for not choosing the kind of ice cream I wanted when it came to selecting ice cream for her birthday celebration. I recall experiencing a lot of disapproval for that strange show of selfishness.

When I took this story to my mother, I got an additional answer. “No, you are thinking of the time we caught the babysitter touching you,” she said.

While I continue to have no memory of this incident I remember several occasions when I was around this babysitter later in life. Before I hadn’t been able to understand my piercing feelings, behavior and memory of those occasions.

“Thank you for telling me,” I stated to my Mom.

“I probably shouldn’t have told you,” she said, “Now you are going to think you have been abused a gazillion times!”

It’s true that the bath with my step-sister might not have been distressing to many untraumatized young boys. Now, however, I have some explanation for my suffering.

Before I broke through the wall disassociation I could never understand why I got such strong intuition and suspicions. I didn’t realize that I was doing this for a good reason. I often presumed there was something wrong with me.

Perhaps now I can better understand and accept why I get uncomfortable in bars and socially withdraw. Maybe now I can understand why I withdraw in trauma trainings with other therapists. When we are all learning emotional freedom techniques, for example, I am unable to benefit from them. Now, I know I am on my way to disassociating in these contexts.

Now I understand why I always have a hard time defending myself when I get attacked. I am numbing out! Now I know why when I do defend myself, I come off too strong and the results never go well. It is ongoing hypervigilance!

People who prey on others can see these signs and chose people they can hurt without getting in trouble. This can open a body up to bullying that can become institutional when labels get attached. People who appear to be victimized end up being soft targets.

And, so, I understand better how I got in some other hard-to-deal with situations

and other disassociated memories. And, so, one day, while hiking with my father on a visit back east, I finally got up the courage to ask what had happened to our family friend who was a few years older than me and had #DissociativeIdentityDisorder.

When I found out that her brother had sexually abused her, I suddenly I had a flash and an image. I saw him over top of her, became paralyzed with fear and fled. Had I really behaved like that? It seemed like more of an intuitive dream, that a solid reality.

Typical, I thought, for a schizophrenic to hear about sex abuse and think it is all about him. Perhaps some of the readers may think so as well.

However, I do remember visiting the two of them alone in a vacation cabin along the Chatooga River in the Adirondacks. They were skinny-dipping, she with just a shirt on, he in the nude, and me, very attached to my bathing suit. My last memory of the evening involves him standing behind her wrestling her around.

The distinctive flash of what I saw and an overwhelming feeling of cowardice and helplessness that overtook me is unconnected to any other part of the evening.

The brother has only admitted to inappropriate touching. So, I acknowledge that even suggesting the word rape may be inappropriate and unfair. I have taken myself closer to this flash and tried to remember visual details. I realize in doing this there were sleeping bags on the floor and that I saw no direct flesh. And yet I felt a sense of penetration internally. But the sense that I could only flee in cowardice connects to other times I acted in similar manners and the shame is enormous.

If I considered these flashes of disassociated memories to be true, there are several other incidents I had with adult men who were significant in my life that were suspicious.

These events help explain why all those years later when I was working in the section eight housing project, I used to walk in the evenings around a lake having rescue fantasies in which I physically psyched myself up to respond to rape scenes. I took these walks to relieve stress while I was using community activists and the press to fight the management company, the police and the black-market dealers against all odds. This is action that caused the police to attempt to institutionalize me in Montana.

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Community Voices

Disassociation Beneath the Suds and Psychiatric Labels

“I have heard real stories,” said my female therapist, “of men doing graphic and horrible things to women. I don’t think based on what you just told me, there is any justification for any accusation whatsoever. I think you have been saying a lot of hurtful things.”

I figured my mother who was paying for these forced sessions put the shrink up to this confrontation. I never did bring the issue of sexual abuse up.

It is true I have had an ongoing suspicion that I was sexually abused. Particularly when locked up for extended periods of time for an eating disorder, and most recently for #Schizophrenia, my suspicion that my suffering had sexual abuse behind it escalated.

It was also true that in the state hospital I had just gotten out of, I had made rash accusations.

I can only recall making the accusation against my mother to my best college friend who had a nefarious past of drug dealing and a grandiose mafioso mentality while manic. When I confided in him that I had alerted the press in a section eight housing authority complex, he threatened me. With this feeling I had been led into this role I was playing as a whistleblower all along, I’d fled towards Canada until the police intercepted me.

From the phone in the State Hospital, without knowing his level of responsibility

or the fact that I was there, I told him what had transpired between myself and my mother in a provocative manner. I told him he was lucky to have a family who cared about him when he had faced going to a state hospital for #BipolarDisorder. I’d also said, “Friends don’t threaten each other!”

“I think it is time for me to visit your mother,” my friend said.

Scared for my mother, I called to warn her.

“You shouldn’t make such accusations about Joe being in the mafia,” my mother said, “He really does care about you!”

When I later asked my Mom where she had heard about my provocative accusation, she told me she forgot.

At the time the female therapist confronted me, I could not remember the real incidents of sexual abuse that I experienced. I just stopped confiding in her.

Initially, shit just happened when I was a teen, built up and I just distracted from the pain through starvation. The incident with my Mom was just one of many. People like me who don’t realize that their suffering is due to trauma are often unable to discern abuse from retraumatization. They may attract a long list of psychiatric diagnoses. They may feel abused a gazillion times and it becomes hard to see how any community might come to the rescue.

What I have come to believe is that if a person has experiences of disassociation, there is the possibility of incidents of forgotten events.

An example of a disassociation I experienced was when I was alone scouting a trail. I stepped within six inches of a rattlesnake, a childhood obsession of mine. The rattle made me run even though I knew better. Then I became aware that I lost track of time. Finally, one of my peers on the Outward-Bound course came and found me staring off into space and I grounded myself.

Also, after being teargassed at the WTO Protest in 1999, and pepper sprayed directly in the eye, I took a walk and lost track of where I was and what I was doing. Suddenly, I realized I walked past my destination and had been out.

Much later, after the state hospital incident, I disassociated in front of my nephew

when he was a bathing cherub in a tub in front of me, I was going outside my body but didn’t leave all the way. This had been happening to me on a few occasions when I was working seven days a week trying to get back on my feet financially.

In fact, when I did write about this occasion, during an editing session I suddenly I got a vague flash of being molested in a bathtub. The girl, my best friend’s sister, was only one year older. I would later remember that she ordered me to take my clothes of and get in the tub with her while our parents were out walking.

I didn’t remember my disassociated response, I only remembered the hands disappearing beneath the suds. There is a story that I ate a moth ball thinking it was a marshmallow necessitating poison control to be contacted. I was a little old to make such a silly mistake. It’s true I could be wrong, but I connect that action to my response to the tub incident. I do believe that around that time I started bathing in my trunks.

I do recall becoming very angry at my best friends’ sister for not choosing the kind of ice cream I wanted when it came to selecting ice cream for her birthday celebration. I recall experiencing a lot of disapproval for that strange show of selfishness.

When I took this story to my mother, I got an additional answer. “No, you are thinking of the time we caught the babysitter touching you,” she said.

While I continue to have no memory of this incident I remember several occasions when I was around this babysitter later in life. Before I hadn’t been able to understand my piercing feelings, behavior and memory of those occasions.

“Thank you for telling me,” I stated to my Mom.

“I probably shouldn’t have told you,” she said, “Now you are going to think you have been abused a gazillion times!”

It’s true that the bath with my step-sister might not have been distressing to many untraumatized young boys. Now, however, I have some explanation for my suffering.

Before I broke through the wall disassociation I could never understand why I got such strong intuition and suspicions. I didn’t realize that I was doing this for a good reason. I often presumed there was something wrong with me.

Perhaps now I can better understand and accept why I get uncomfortable in bars and socially withdraw. Maybe now I can understand why I withdraw in trauma trainings with other therapists. When we are all learning emotional freedom techniques, for example, I am unable to benefit from them. Now, I know I am on my way to disassociating in these contexts.

Now I understand why I always have a hard time defending myself when I get attacked. I am numbing out! Now I know why when I do defend myself, I come off too strong and the results never go well. It is ongoing hypervigilance!

People who prey on others can see these signs and chose people they can hurt without getting in trouble. This can open a body up to bullying that can become institutional when labels get attached. People who appear to be victimized end up being soft targets.

And, so, I understand better how I got in some other hard-to-deal with situations

and other disassociated memories. And, so, one day, while hiking with my father on a visit back east, I finally got up the courage to ask what had happened to our family friend who was a few years older than me and had #DissociativeIdentityDisorder.

When I found out that her brother had sexually abused her, I suddenly I had a flash and an image. I saw him over top of her, became paralyzed with fear and fled. Had I really behaved like that? It seemed like more of an intuitive dream, that a solid reality.

Typical, I thought, for a schizophrenic to hear about sex abuse and think it is all about him. Perhaps some of the readers may think so as well.

However, I do remember visiting the two of them alone in a vacation cabin along the Chatooga River in the Adirondacks. They were skinny-dipping, she with just a shirt on, he in the nude, and me, very attached to my bathing suit. My last memory of the evening involves him standing behind her wrestling her around.

The distinctive flash of what I saw and an overwhelming feeling of cowardice and helplessness that overtook me is unconnected to any other part of the evening.

The brother has only admitted to inappropriate touching. So, I acknowledge that even suggesting the word rape may be inappropriate and unfair. I have taken myself closer to this flash and tried to remember visual details. I realize in doing this there were sleeping bags on the floor and that I saw no direct flesh. And yet I felt a sense of penetration internally. But the sense that I could only flee in cowardice connects to other times I acted in similar manners and the shame is enormous.

If I considered these flashes of disassociated memories to be true, there are several other incidents I had with adult men who were significant in my life that were suspicious.

These events help explain why all those years later when I was working in the section eight housing project, I used to walk in the evenings around a lake having rescue fantasies in which I physically psyched myself up to respond to rape scenes. I took these walks to relieve stress while I was using community activists and the press to fight the management company, the police and the black-market dealers against all odds. This is action that caused the police to attempt to institutionalize me in Montana.

2 people are talking about this
Community Voices

Growing Up with Complex Trauma in an Era of Misinformation:

I grew up in the #MentalHealth system when Prozac was the new craze. Prozac was the second drug I took and within three years there was the new field of psychopharmacology. By that time, getting the right combo became quite the rave. What that meant there was little to no exploration of the role of trauma in my life. Instead of learning about elements of trauma that were related to the eating disorder that threatened my life, I was diagnosed with a personality disorder and told not to research it because it would only make it worse.

My therapist would repeat to me that the only way to deal with a personality disorder was in the context of a psychodynamic relationship. She didn’t let on that she didn’t think I was college material even though my GPA was a 3.9. She told my parents. They concealed this from me.

I stuck with this psychologist for seven years. It was true I didn’t want to look back at my life growing up with privilege. I also didn’t get the feeling that it was mature to blame my parents for the shameful eating disorder that left me dwelling in the inner-city and without a sense of support. My suffering was nurtured in psychotherapy by a rolling of the eyes and waiting for the impact of the next drug combination.

A History of Class Conflict:

I first started to notice not enjoying being around other people in fourth grade. It started by being bullied and teased by my peers for not wearing the latest fashions that my parents refused to buy. For some reason I dealt with this by fighting back and getting nerdier. My parents sought therapy for me. Perhaps, they were embarrassed by hearing about my social problems from their other friends on the private school faculty.

Back then, I could not understand why I stood out so much. My parents and shrink would tell me that my superego was too dominant. The shrink would get my Mom to let me buy more fashionable clothing.

Meanwhile, in the summers I found that I, in fact, did fit in with the welfare family who rented the downstairs of the Lodge, our vacation home in a rugged boon town in the Adirondacks. My family once owned a lumber company and my father inherited many old buildings which we used to vacation and rent out. With the welfare family living downstairs for three summers, I felt totally accepted. I was too innocent to realize that their lives depended on keeping me happy. We didn’t need to bathe and could be wild and have fun.

My welfare brothers would talk about hunting frogs with bb guns. The frogs wouldn’t die. Bbs would lodge themselves under the frog’s thick skin. They could shoot them all day. They loved to hunt frogs all day. One had so many bbs in it, it just floated in the water with a stunned look on its face.

One morning I woke up screaming from terrors. Pigs were being slaughtered in my dreams. My welfare brothers would laugh at me. They would tell me I was screaming, “Don’t you do that . . . Don’t you do that . . . Ah . . . AAAhhhh!” Then, we would go to work for my father who always told me that my welfare brothers were better workers than me.

I guess I lived and worked with that family enough to see the world from their perspective. And, boy, when I did that my family didn’t look too good. In many ways it only reinforced self-hatred.

Misfit:

Of course, even though I dressed better, things would still only get worse for me at the private Quaker school I attended in a Philadelphia suburb. I would break into my French-Canadian northern drawl to confront my peers about their teasing.

I think my social awkwardness really stood out during summer outings away from the Adirondacks. First it was a two-week backpacking trip with middle class Albany, NY kids at the adjacent YMCA camp. Next it was not fitting in with rebellious rich kids who were getting straightened out at a North Carolina Outward Bound Course. And, finally, I attended a work camp in Belize where all the boarding school kids only wanted to drink and be ugly American Tourists.

Meanwhile, I stuck to my stated goal, to live and work as though I lived in Belize. I was told it was the wrong reason for making the trip, but I didn’t care.

Starving:

The year before my parent’s divorced I didn’t sleep more than three hours a night for nine months. Then, when my parents got divorced things got tough as I had to keep up with sports, work, extra curriculars, travel between both houses, and the sharp increase in school work. My mom started staying out at all hours of the night and forgetting to check on me while I was up working through #LearningDisabilities at two in the morning. My dad still expected me to do his house chores no matter how many papers I had to write or how hard I worked at my fast food job.

I was underweight when I got admitted to the hospital. My parents packed my bags to drop me off at the hospital and the therapist said, “Wow, these bags are really heavy!” Then, he ordered my family to attend daily family sessions with me.

When I graphically failed to gain weight in that setting, my family had to pay out of pocket for two months of inpatient treatment, so I could gain weight. My father cried signing over the check and I felt much shame. I presumed the expense depleted my college fund. Because my room was converted to a study and I moved in with a friend upon discharge, I chose the least expensive commuter school.

College:

Okay, my choice of College was not quite that simple. In the all-female inpatient unit where I’d be forced to revisit for an additional three months (this time insurance paid for it,) even a repressed fellow such as myself managed to learn to how to kiss. I started a sexual relationship with a twenty-five-year-old newspaper photographer who was schooling at the affordable commuter campus. After I graduated and worked at a summer camp, I moved in with her. Because she wouldn’t allow me to have friends, the relationship only lasted two years.

The latter two years, I hid the fact I was binging and purging by keeping to myself. I never learned to hang out and fit in. I didn’t make it to as much as a single college party. Instead I worked with the neighborhood kids at a local Korean gangster’s deli. Community relationships and the associated sociological learning was the thing that kept me going.

I’d do a little better with my socialization in grad school when I was medicated and under psychodynamic treatment. However, when I tried to breakaway and make a comeback on the west coast, it wouldn’t end well. I found myself compelled to uncover murder and mayhem in a local section 8 housing facility. I’d end up in a state hospital and believing I was under surveillance for two years.

One-to-One Hundred:

It’s true with complex trauma, I am sensitive and overwhelmed by the regular issues that come up between people and in families. My emotions are based on a social justice narrative and I go from one to a hundred when I am getting teased, causing me to be further targeted. I may not get the joke right away, roll with it and have a good comeback. The insult may cut at my core when I think about it later.

During my twenty something years, when people drank (or drugged,) I generally responded the same way I do when I get teased. I’d get a numb look on my face, withdraw, look at my watch and long to be somewhere else. Then, I notice when people talk to each other as if I’m not there and I don’t know what to do about it.

Disassociation:

Of course, despite all the years of treatment I received, nobody noticed or asked about my experiences with disassociation. It wasn’t until I wrote a memoir about surviving the #Schizophrenia diagnosis that I recaptured a memory of molestation the summer of my third-grade year. In fact, I don’t disassociate regularly, but it can happen in times of excessive stress.

Of course, my response to the molestation incident was so extreme, I wonder if that was my only experience. I have many traipsed memories that feel like dreams and mystery. Are they also disassociated memories? Are they Dreams? I have always had them, and I have always wondered. Additionally, having many hypervigilant memories means, I have lost trust for people without understanding why.

Post-Partum #Depression:

I never really understood how devastating the experience of post-partum depression can be for a mother. Then I heard a severely-traumatized patient I work with say that her post-partum depression was the lowest point of her life. Think of a traumatized person. Think of years and years of homelessness, rape, physical abuse, family #Suicide, substance abuse. And think that all this does not compare to the pain endured during a post-partum when a woman just can’t connect with her child. This really made me think . . .

Up until recently, my mother made yearly visits to visit family in the area during which she would spend a day at my house. One year I drove out a couple hours away to meet her at a park local to her other relatives to see her an extra day. Out walking in a flat, marshy California park amid Spring flocks of birds, my mother finally gave me a feel for what she went through after my birth. Her mother refused to support her in her most difficult hours. I knew she had been depressed when her mother died, but I hadn’t known this. I knew she only told me this because she wanted me to stop processing depressing stuff and I listened to her.

In my family two-generations back, lobotomies and institutionalization were the cure for family mental problems. There was no support available to my mother when it came to having . She had to buck it up. She still expects me to do the same.

Still the Pariah:

I find no comfortable around people. I avoid social engagements because I feel stigmatized, patronized or outclassed by the comments of others.

For example, while it’s true I do not know exactly what all my relatives really think about me, I think that in observing a slew of collective behavior, most would conclude that something is going on that is not positive.

It is true I bear the stigma of having schizophrenia because I choose to live out of the closet. Additionally, my memoir was honest and not always flattering toward the family support I received going through the experience.

My grandmother with #Dementia could not remember who I was, but when she found out

I was the author of the book, she declared, “It made the family look bad!”

My mother has said, “I could have written a book about all we did to try to help you and about how difficult you were!”

My uncle, a career professor at Princeton University, demurred in his response for a while and then said only, “the last chapter was positive.”

Even though it won awards in four contests, my aunt gave my book four stars on Amazon and wrote, “it is a difficult book, as the author, a trained mental health professional, dumps the reader into his own experience with precarious mental health . . .”

Many relatives refuse to look at me and only speak to my wife or each other when I am around.

When I had to miss a reunion because of a severe back injury that had me out of work for several months, I was told by my mother and cousin that my relatives said “well, why couldn’t Barbara (my wife) have come!” It seems it was a joke that was tossed around so much at the reunion, some felt I should get to enjoy it as well. I still don’t know what to make of it. Do you?

It is true not all the responses of family members are necessarily negative. For example, the judicious comment of my uncle may not have been as negative as it had seemed. He later told me he liked my book when he saw I was upset. But it is much easier to withdraw and avoid my family. If my uncle really supported me, would he tolerate the jokes about me that are at my expense? I often wonder.

I perceive similar acts of hostility from other groups of people and choose to withdraw and write when I am not working.

Recovering from Psychiatric Treatment:

Being a psychiatric survivor means that I along with other marginalized groups in America like many veterans, homeless, felons, inner-city children and other abuse victims can relate to the symptoms of complex trauma. While it’s true there is the potential history of emotional neglect, the disassociation, the molestation, the hypervigilance, the psychic numbing, the emotional dysregulation, the avoidance of related things, the shame, the people pleasing, there’s also a history of privilege.

It’s true, I didn’t have it that bad until I entered the twisted system of care that is based on a schizophrenia diagnosis.

While it’s true I continue to be dependent on medication, I do so because it helps me manage the oppression that surrounds me working in an inner-city outpatient psychiatric unit. I have learned with the help of the medications to have a public relationship with consensus reality that enables me to have meaning and purpose. I am liked and helpful to people on the unit where I work.

I suppose when I was coming up no one could get it right because a complex trauma disorder didn’t exist back then. Instead there was disorder after disorder after disorder. Nurses on the unit suggested I was an adult child of an alcoholic. Now there’s another disorder or two to add of the epigenetic sort. What can I say, I am an easy person for whom to ring up a bill!

When I was in state hospital they couldn’t shut me up about how much trauma I was enduring locked up for being a whistle-blower. I circled the day room I was confined to for two weeks and got on the phone and yelled to my family and friends that the mafia was following me.

Meanwhile, I negotiated unwanted relationships with a red-state-Mexican-mafia-female and resisted the offers to run away with her. Then, I resisted the opportunity to join an outlaw gang for protection against her.

Also, there was a short, illiterate thief with severe #Scoliosis who said he was there

to recruit me into the Navy Seals. He said I had what it took to be a great assassin.  He said I passed all his tests. However, for my last test, he said I had to say that Ronald Reagan was a great president. I failed that one! As a result, I was sentenced to stay in the hospital against my will for three months.

Six months later, after two moves, the only job I could find and maintain was a job at an upscale Italian Deli. So, all gaslighting, taunting and teasing aside, maybe I had a point!

Believe me, still taking medication for complex trauma is not the worst thing that can happen to those of us who are coming from an era of misinformation! But if I had been treated for trauma and experienced more compassion, I wonder if I would continue to need the medication?

Community Voices

My Story of Mental Health Warehousing

I was a skinny and reluctant social worker when I first started out. I was working through an eating disorder. Initially, I didn’t really believe that taking home a middle-class salary for nickel-and-diming those less fortunate was my idea of contributing to the world.

I guess, I’d gotten the idea that that was what the field was like during interviews I’d held with middle-class white women who worked down the street in government agencies during a social welfare class. I’d set up residence where I was finishing up my schooling, in Camden New Jersey. I needed money to stay independent from my parents.

Then, I took a computer test that suggested that I should become a cop in the career development office. I’d worked under-the-table at a local Korean deli for several years. Most of my neighborhood friends had pointed to the vice squad when they came in under cover and took coffee from us for free and told me they were the real bad guys. Sure enough when we were held up at gunpoint, the cops were scared to come around.

“Yeah, picture me as a Po-Po,” I said to my best friend, an English major who used to sell drugs and was going back to school.

“Well, actually, you always have had a cop mentality,” said my friend.

I shot him a look that said he was insulting my intelligence. I started looking at social work internships.

***

During my second job, I worked at a day program that was connected to a 30-day crisis house. Since I was only just entering a master’s program, I felt extremely privileged. As a result, I aligned myself with my supervisor and other more experienced workers. Without credentials, I was focused on working with people who would get my back.

One day, I received a client and was ready to get to work on housing issues, when I found out that she came attached with a more experienced case manager. Though not very talkative, she did tell me very clearly that she did not want to go to a particular boarding home, the largest such facility in the county. When I talked to the case manager, he was clear about the woman’s future. She had to go to the unwanted boarding home.

“Wow, that girl is really sick!” I heard a coworker who worked the graveyard shift at the crisis house say.

“I don’t get it,” I said, “I don’t see why she can’t live where she wants to. I help other people find housing, why can’t I help her.”

“That girl is very sick, I can just tell by the way her eyes roll to the side” said my co-worker.

I deferred to experience. Sure, I had been hospitalized for six months myself, but I knew better than to make waves that would impact my work reputation. My therapist was teaching me that I could be a little paranoid and I wouldn’t let that affect my clinical judgment.

The woman was shipped away to the very place she most did not want to go. I can now see that she had been right not to trust any of us. For us, she was just protocol.

***

Once I graduated my master’s program and was promoted to a case management position, I visited the infamous boarding home which was buried in the New Jersey Pine Barrens in the far reaches of the county. Out in the pines, there were few stores, lots of sand and aged pine trees whose growth was stunted by fire. The pines were where most boarding homes in the county were located. I admired the scenery as I drove out.

The home’s one-story buildings were made of quarter inch plywood and styled in rows like chicken coops. There was no insulation from the elements in any of the buildings. Corridors were long and full of small rooms with cots and no furniture. At the end of each there was an open rec room where open vats of warm, iceless bug juice sat out under the dim lighting. There were no fans to drown out the buzz of the flies.

These halls reeked of sickness. The chipping linoleum floors were being mopped with cheap chemical stink water that reinforced the sick feel. Almost all the clients were either gone to a day program or had walked the three miles to the store. I could not even begin to picture what the place looked like when it was full.

When I finished I followed the owner to the front office. The owner’s daughter had been in my sister’s class at our posh private school before male anorexia had drained my bank account and lowered my social standing. Back at the office, the owner had barraged me with gossip and information about the school.

Once freed to collect my thoughts, I recall betting to myself that they treated mentally ill better back in the Middle Ages.

***

A year later, I made enough money to fund a move to the west coast. Within six months of moving, I made a job transfer into setting up services in a section eight housing authority facility. Here, I was reminded a lot of my ghetto days in Camden. I got to know a more urban style of warehousing. The project was scrutinized by the local media in the City of Seattle with its large homeless population. To get section 8, a homeless person had to spend time in this project.

I witnessed quite a bit in the six months I worked there: thugs tearing down doors and emptying apartments in broad day light; stabbings of impoverished addicts that were barely sanctioned; a suspicious death by heroin overdose; vulnerable individuals’ going to jail for being bullied into letting their rooms be used to deal drugs. And some of the things the residents said were even more eye-opening. I figured it was finally time I do something!

When I found out my supervisor had a significant drug habit I became suspicious of her intent. I stopped heeding her. Like a vigilante, I leaked info openly to a community activist and to newspapers and was starting to face unforeseen levels of threats.

One day, a resident with a job who had pointed out the local drug kingpin to me, told me, “It’s true we all love you here, even some of the shady people like you . . .”

“It’s just that we are afraid of losing our housing,” added his partner.

“You see,” continued the resident, “we all know this guy who came to work here and was just like you, fighting for all the residents. And he ended up having to come and live down here. I am just worried that that is going to happen to you . . .”

Shortly after this interaction, I received an unsuspected threat from my best friend from my ghetto college days who I called to consult. I found myself in a unique state of crisis. Was the threat real? He paid for college by working surveillance for a bad lieutenant friend. I matched up stories and began to see the world from a new nefarious perspective. . .

***

Three days later, I was picked up out of a ditch on a mountain pass outside of Butte Montana.  I had been harassed by police for the past two days since they had violently halted my escape to Canada and separated me from my car. Finally, I surrendered to them.

Two months in, I was transferred to the most chronic unit. The temperature inside was below freezing. There were icicles inside the window that sat above my head. It was almost as bad as the boarding home in South Jersey.

When I first entered those dank halls, I felt destined to behave with the subservient merriment of the thirty-year residents. I was given old, dirty clothing so that I could layer up among the crowded halls. My appearance and sense of self declined. Fungus off the bathroom tiles grew under my toenails and warts covered by hands.

I still remember waiting outside the ward in the freezing Montana winter, staring at the cash cattle in the field. I’d be waiting for the staff to return via bus, late from lavishing with their lunch.

There I was determined to stay hopeful, industrious, and independent as I weathered the biting chill and it only annoyed the staff to no end. They all rolled their eyes when they returned as if to say I was entitled.

“That’s what they all say about you,” said my psychiatrist who I finally got to meet with her two and a half months in. I had put requests to meet with her in writing, but it never worked.

The staff didn’t have any hope for me. They all knew I wanted to take down the mob for what they were doing to me. The Cowboy Security Squad even gave me a beat-down to discourage me.

Maybe I was a little entitled because I kept mouthing off. Meanwhile, other patients told me the mafia really was following me. Many said they were in the mafia. One even tried to lure me to join a local gang for protection.

***

All this I went through was just the beginning of some very hard times that would last for two years. Discharged to the streets I moved to Fresno, California and the temporary work I landed to get an apartment let me go when I ran out of my month’s supply of medication.

I started to feel I was being harassed in the streets. I didn’t know what to do. Somehow, despite extensive efforts, the only other job I could find was at an Italian Delicatessen. Working at the Italian Deli forced me to move from the Central Valley to the outskirts of the Bay Area. Only then, was my family who I believed was connected to the mafia was willing to do what they could to support me.

I had no supporter who seemed to believe that anything that I went through was real. They only treated me as though I needed tough love. After ten months of employment, I finally learned to stop being bullied by drug-dealing, suburban kids who were half my age. I stopped letting my white shirt wrinkle during my rainy twenty-mile bike commute (and two-hour long BART ride) to work; I accepted that I had to be polite to the Republican clientele that wanted to know all the ridiculous details about which farm their fine fucking olives came from.

Finally, when I got insurance and could afford medication, I was able to get the anger and paranoia out of my eyes. I believed people were entering my apartment during this time. Mail from job interviews would come to me already opened in spite of my complaints to the mail service.

***

Now, I am a Licensed Marriage and Family Therapist who works in an inner-city psychiatric day program, primarily with warehoused individuals. Boy, did I find it difficult to return to my career after being warehoused. It was a real uphill battle. I even lost a per diem job at one point and nearly landed back on the streets. And the survivor’s guilt really keeps me up some nights.

Don’t worry! I have learned my lesson about being an advocate. Additionally, I know better than to try to educate the public about the evils of stigma and #MentalHealth warehousing. Research says that this will only make the problem worse.

Sure, I feel bad that twenty years ago a woman was committed to squalor and I did nothing.  But I learned advocating for the mental health of the vulnerable needs to be done carefully, one case at a time. Alerting the press and crossing the police is a good way to lose your housing and end up destitute yourself. I learned first-hand about how arrogant my actions were when I thought it couldn’t happen to me.

In these days of escalating disparities, I am grateful now to respectfully extend my therapy skills this forgotten about population which is growing exponentially in our local homeless encampments, our flooded shelters, board and care homes, our county jails and over-crowded prisons.

When I think of all I went through and still go through because I was warehoused for one month, I am amazed to see people come back and do better and better. There is a lot to know and respect about them. It is important for social workers just starting out to learn from them. They know an awful lot about their situation.

I think in this era, losing housing could happen to many of us. Try attaching #Schizophrenia to your name and see how many people stick around to support you and listen to your woes. Some days I come home distressed that I cannot do more to help, but over the last sixteen years I have learned how to share my story and develop programs that do help people. I am extremely lucky!

Tim Dreby

Why We Need Providers Who Specialize in Psychosis

This story is for the mental health providers or peer counselors who are invested in developing treatment programs for people who have experienced psychosis across diagnostic categories. I want to help other interested parties develop their own practice so that an important need gets addressed. I was hired straight out of college to work in the counseling field. I started to work with an adult mental health population at my second job at the age of 23. Since that time, I have been increasingly focused on how to make therapeutic engagement meaningful when working with people experiencing psychosis. In the field, I’ve known many people who have said or implied that this is not possible. They may argue that the current mental health system is the best we can do. I believe uniquely talented specialists who have lived experience with psychosis are needed, primarily because the mental health system fails so many people. We need outreach specialists who can meet those struggling wherever they are at; to encourage them to seek out therapy specialists, competent in group and individual practices. The more people with lived experience the better! Ultimately, I think we need a system of self-support for longterm sustainability outside the system. Working my way through graduate school, I can still remember struggling to get my footing as a professional counselor. “Oh, you’re good,” said a homeless man who sticks out in my memory. “What do you mean?” I asked, perplexed by how he could affirm me with such confidence. “Well, I can tell because you just asked me what was going on with my schizophrenia, like you really wanted to understand it.” I did a double take at this man standing before me. I couldn’t understand how this homeless man could give such a supportive response to the privileged, nervous person standing in front of him. I didn’t sense that he was doing this to butter me up. In fact, he was far more supportive than any of my friends. I recall making an internal commitment to him on that day, hence my desire to learn about and help treat schizophrenia. I felt I owed that man something for his kindness. I got my degree and was promoted to a case management position. This was a wonderful opportunity to get a picture of what life was like for the schizophrenic clients living on the streets, in the boarding homes or 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 tried and I was happy with the arrangement. After getting tired of being in my hometown and getting dumped in all the female relationships that I barely managed to make, I switched coasts and accepted underemployment in a new city where I could pick up where I left off at attempting to understand schizophrenia. I really wasn’t expected to do therapy here — I monitored well-tended housing for clusters of adults struggling with mental illness — but I did anyway, much to the chagrin of my supervisor, who I often challenged about standard care. It seemed true that the clients seemed to have it pretty good in the west coast city. The facilities I monitored were much nicer than the ones back east. But within six months, after another heartache, I took a promotion in a pilot program setting up services in a section eight housing authority complex. I have to 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 to wrap my head around. I set up shop in a notorious section eight housing project and got some real exposure to what people who end up homeless due to schizophrenia have to deal with. Let me tell you, it wasn’t a very safe environment. Six months in, I was talking with a resident I trusted very dearly. He paused for 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 resident who struggled with schizophrenia and 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, I had been picking up on random threats and feeling very unsafe. Within a week, things escalated in my personal life. I series of unfortunate events ended in my being cast into poverty and spending time in 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. When I returned to taking medication, I was able to climb out of this pit. To get back into the mental health field, I had to put my barely attained stability on the line. I was working a new career with developmentally disabled individuals, working 70 hour weeks (part-time at a deli), but was at least financially independent. The ideal mental health job finally came up, but I had to take a considerable risk. When I failed to attain full-time status after falling short of impressing my supervisor, I could not collect unemployment and had to do something fast. Luckily, I landed a low-paid internship, a part-time gig back at the deli and most importantly, a part-time job at a hospital with a future in it. 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 felt like no one was 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. How was I going to transition from being treated poorly 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. When I earned my way back to working with people individually, I was a little better at getting rapport and experimenting with helping out ways to reach people struggling with schizophrenia. I heard a lot of “oh, you’re good” comments. It took me six years and a number of side jobs to get my license and be fully grounded in a staff position. Then it was time to take another risk. 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 overly anxious about making rent. I soon found that among licensed marriage and family therapists that most presumed there was not much value in treating individuals who had schizophrenia. Many who had been forced into working with those struggling with schizophrenia characterized them as just “lazy” and “unresponsive to instructions.” Those who picked up on my insecurity said that “maybe there was a future for me in providing just case management services.” I often heard other professionals saying that it was debatable whether or not there was effective treatment for psychosis and schizophrenia. Sitting in licensure lectures, we were taught that when you come across a person who is experiencing “psychosis,” the standard method of care is to hospitalize and refer to programs. When I passed the 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 started to experiment using my own story. Learning how to navigate the profession as an identified schizophrenic has been full of challenges. A coworker found a copy of my curriculum and turned it over to the manager with grave concerns. Another left insulting cartoons on my desk. I once heard myself being referred to as, “crazy Tim!” I ignored this comment and persisted. Eventually, I took a job where I was identified for two years, advocating for change in the county. My name and condition spread like wildfire. In team meetings, I was accused of being against medications. One person who defended me ended up getting written up and eventually fired. My groups, my popularity among people who I help and my own little paranoid vigilance has helped me survive. The past nine years have helped to thoroughly develop my own eclectic theoretical approach toward helping others who I deem to be “message receivers” in groups and individual settings. Things have gotten a lot less hostile for me at work. I now know what I should have done to help out that homeless man I met two decades ago. Additionally, I wrote a grant and proved that “message receivers” could be paid as outreach workers to tell their story to providers and transition to being group leaders and mental health professionals while they attract and motivate individuals who might not have otherwise been motivated. I serve on the board of the local Hearing Voices Network, who I believe repeatedly proves that this work can be done on a regular basis. Perhaps one day other interested parties can get to where I am at without having to face quite as much pain. Having providers who specialize in psychosis is sorely needed. We want to hear your story. Become a Mighty contributor here . Thinkstock image via halfpoint