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‘What I might call my soul’

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This week’s essay is by Jim Probert:

Having worked for years in a professional world before I came out as a peer, I know it can feel so profoundly demeaning when even genuinely compassionate people talk about us as if we were a separate species.

At the same time, when I’m offering recovery-oriented ideas to grad students and interns in my role as a psychologist, sometimes one will be honest enough to say, “I’m afraid if I do anything unconventional, I’ll be sued or fired.” I think many professionals realize the need for change but fear they must do exactly what they were taught, or risk being held responsible for anything that goes wrong in the lives of the people they are trying to help.

For me, building a bridge between professional and peer worlds has meant working to demonstrate ways in which clinicians can actually be more professional and effective by acknowledging civil rights.

It’s a tricky path. On one side, I risk losing whatever credibility I might have left among conventionally minded colleagues. On the other, I risk pissing off my peers or being drawn into involvement in the very kinds of traumatizing practices I have been working to change.

But, for me, it still beats the hell out of not trying. I would confirm that we can impact clinicians who have never seen more severely distressed individuals recover and become empowered. And those who “are” us may be empowered to move toward more liberation.

I have never pushed anyone to “out” themselves. I have heard from many peer specialists working in mainstream settings whose lack of power and lingering identified-patient role ends up feeling humiliating. Even though I was not out about my own lived experience in grad school, my efforts to advocate for recovery and a broader picture of therapy also left me with re-traumatizing experiences. And I know other peers have experienced more drastic discrimination.

I also know our voices need to be heard. I know that treating us with respect and dignity as fully human beings will always align fully with the best therapeutic, healing practice. And I believe that this movement of suicide attempt survivors and the larger recovery movement are supporting a greater good for all people.

Discovering the peer movement in 2006 changed my life. Just finding the National Empowerment Center, the Hearing Voices movement and Dan Fisher online was enough for me to finally come out about my own experience, which has given so much more power to my advocacy efforts. It also liberated me so much more fully as a human being.

In the early ’80s, I was diagnosed with bipolar disorder. Yet my recovery involved coming to terms with both the tremendous force of my own emotions and those extreme experiences that, by themselves, would have met criteria for diagnosis of a psychotic disorder.

I never thought about suicide until after my two hospitalizations, when I finally accepted what I was told to be true, that I had a severe and incurable mental illness. Then I stood alone many times in my parents’ kitchen with a knife in my hand, wanting intensely to be dead and searching for the strength to kill myself _ although, somehow, I never took any steps beyond that point.

The psychiatric medication I was taking did hold off my more extreme states, in which I heard commanding voices, became Superman and Jesus and had many other experiences a good southern Presbyterian choir boy and National Merit Scholar was not generally expected to have. But the medications did not alleviate the misery of severe depression, anxiety, panic and so much inner torment that remained.

During my hospitalizations, no one appeared to consider the potential impact of life experiences and childhood trauma. No one had time to talk to me long enough to begin learning about my life. No one addressed the teasing, assaults and death threats that I suffered at the hands of schoolmates or the sexual abuse by a mentor. No one addressed the impact of being overwhelmed as I was by my own inner states. No one addressed the traumatic impact of hospitalization itself, of being handcuffed, put in isolation and restraints and medicated with Haldol so I could barely walk.

The psychiatrist Richard Mollica, director of the Harvard Medical School Refugee Trauma Program, has said, “I can’t understand as a … psychiatrist how in an inpatient unit you can understand the diagnosis of the patient without understanding the impact of the traumatic life experience.” His work with torture survivors led him to see that the source of recovery from trauma is to be found within traumatized individuals themselves. He sees the work of clinicians as following this source of healing and seeing the client as the “teacher.”

This may be one reason why Open Dialogue is so effective. The Open Dialogue approach is the mainstream mental health response to psychological crisis in Finnish Western Lapland, where it has been used with severe depression as well as with psychosis. The approach incorporates a type of hospital diversion program. The first choice of response to crisis is to hold daily meetings in the homes of distressed individuals, with their support networks. The first choice of response to escalated danger is to leave a professional there in the home overnight. (And the published results of Open Dialogue are the source of its growing fame. Five-year recovery rates from first-break psychosis are over 80 percent, with fewer than 30 percent ever taking neuroleptic medications.)

Psychologists, psychiatrists and nurses all participate as therapists in this process. Rather than encouraging blame, everyone in a distressed individual’s social network is given opportunity to be part of a solution. Every voice is given space, attended to and respected. Comprehensible words are eventually voiced for even the most difficult and traumatic memories.

I cannot overemphasize how helpful this would have been for me and my family, who were also in shambles when I went psychotic. And because the professionals in the hospital where I was held lacked this kind of philosophy, I do not believe any of them ever suspected I would eventually be able to turn inside myself and sort through the chaos of my own thoughts, emotions, sensations, and poetic imagination, what I might call my soul.

I eventually found a gifted experiential therapist who helped me begin this work. But I often had the feeling I was trespassing by daring to believe I could ever sort out my own experience. It felt like the authorities had not only ignored my suffering, but they had also put yellow tape all around me that read: “Off Limits: Authorized Medical Personnel Only.”

I do not know whether anyone without lived experience of this can truly understand. Before these changes, I experienced falling into the grip of that exclusively medical approach to my life as a profound violation of my innermost self. That experience stripped me of my capacity to author my own life in even the most basic ways.

I have heard researchers and even clinicians disparage those who try to understand and negotiate “mental illness” in terms of religion, spirituality or other traditional and nonscientific terms. Yet I did eventually reclaim my human right to make sense of my own “inner experience” from many different perspectives, including spiritual perspectives.

I can also experience my emotions as emotions again, drawing on my heart-to-heart connection with so many individuals experiencing a full range of painful and joyous life events. I can continue to heal the deepest roots of old traumas as well as the impact of working as a therapist with so many traumatized people.

Now, by talking about my own experience, I have tried to illustrate to the broader world that the respect of human rights is not a luxury for emotionally distressed individuals and that any violation can not only be extremely traumatic but also can significantly increase suicide risk.

I worked incredibly hard to recover and to build the life I have today, where I can make a real difference in other people’s lives. I am proud of that. Yet I remain aware of how truly fortunate I am. Too many people languish in unresolved trauma, overwhelming emotion, a lack of social support and a lack of empowerment to find a valued role in the world.

And this is how I see my role as a peer/professional. Little by little, I have found a voice to advocate among colleagues and the public, that they might join us in working actively toward more effective and less traumatizing ways of responding to human distress, including their own. At the same time, I try to support distressed human beings, in general, not to wait for that external change and to heal their own lives.

One individual explained, when I began working with him as a client, that he was doing much better in his struggle with suicide. He had not been hospitalized for extreme states in a number of years. He was back in school. He was by no means free from suffering, but he saw himself as recovering. His life felt purposeful, and that allowed him to see his struggles as a fight worth fighting.

But he said something striking. He suspected the only time that he might actually be in danger of killing himself would be if he were ever hospitalized again. In this individual’s case, this was not a statement about the immediate trauma of hospitalization. What I understood was that he would see himself as not recovering, as an un-redeemable mental patient, as a person whose life was not worth living.

While I worked to hold a respectful space for his experience, in time, I also offered another way he might look at his life. Maybe he had internalized “mad phobia,” the attitude toward overwhelming distress that we often learn from the way the world treats us when we are identified as mental patients.

We learn to see ourselves as worthless and unlovable. We learn to see our lives as not worth fighting to protect, not deserving of basic human respect. And we see our “symptoms” as something to fear and block out, understandably, to protect ourselves from all this.

Eventually, what this individual did embrace was the idea of practicing unconditional self-acceptance. He came to see standing up to suicidal thoughts as a way of standing up to mad phobia, internal and external. He embraced this as an emancipatory decision, as a way to stand up for his own value and civil rights _ and to reclaim his right to keep working toward a deeper healing, even during periods of overwhelming distress.

___

Portions of this essay were adapted from the article “Toward a More Trauma- and Recovery-Informed Practice of Lethality Assessment and Suicide Prevention.” To learn more about this approach to healing and recovery, you can download the handout to my Alternatives 2013 workshop, “Trauma, Internalized Mad-Phobia, Suicide and Recovery.”  I would also point readers working in or toward a professional career to Users and Survivors In Academia.

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8 Comments Join the Conversation

  1. Thank you so much for posting this! This was extremely helpful to me as a MSW student with lived experience trying to come to terms with my role as a provider while not wanting to give into oppressive/re-traumatizing attitude of many of the programs in my community. I agree that not feeling like a helpless “mental patient” who is messed up beyond repair is absolutely imperative in facilitating empowerment and recovery. I can also relate to feeling as though mh professionals don’t care about my traumatizing experiences when they don’t ask or don’t consider how they might impact the way my diagnosis and life has unfolded up to this point. You’ve given me a lot to think about! Thanks!

    Reply

    • You are welcome, Emily. I’m glad this was helpful. Yes, I believe it is very important to learn to stand up to those images and feelings which we take in, however much perseverance it takes. (They do seem to keep coming back in.) And then, I have found, this work we have done for ourselves can become something so healing and re-humanizing in our work with others.

      Reply

  2. I very much appreciate your post. I was extremely worried that once I “gave in” to my illness and hit rock bottom (in the form of a major depressive episode in which I very nearly ended my life) that I was officially a ‘sick person’. I thought as long as I could hold off my symptoms, I was fine. I didn’t get that I was sick and just torturing myself by resisting therapy and medication to live under the theater of wellness in my own day to day.

    Now that I am in tune with my feelings and know when to be more conscious of my condition and pay attention to when I am feeling tired and run down, life is better. I am very open and vocal about my illnesses whereas before I was ashamed and hiding them. I have even considered completing my education with a Ph.D. in Psychology because as I have come to learn, those of us with lived experience can better empathize with others who may also be finding their way as a ‘sick person’; but a sick person with a functional life. There isn’t a “giving in” to the illness there is only getting along with it as best as we can. I have found in accepting myself, others accept me also even if they do not understand.

    Again, thank you for the contribution. Every person I find that speaks out about their condition is another reason to feel validated as a contributing, valuable member of society.

    Reply

    • Thanks, Christine.

      I know one of the challenges of the consumer/survivor/ex-patient movement in general has been that some of us find the medical approach lifesaving and some of us just the opposite. I think it’s so important for each of us to find our own best ways to accept ourselves and at the same time, as you say so well, decide to “get along” with whatever emotional challenges persist or return periodically. I am glad you’ve found a way to be more loving to yourself and take better care of yourself whenever the suffering gets worse. (I really do think those are the times we can experience the most healing if we can find a way to be open and compassionate to ourselves and even though that can be terribly difficult.)

      And, yes, we are able to stand up for each other–that we are valuable! And that we have a healing to bring not only each other but the rest of the world.

      Reply

  3. Your story moved me tremendously! I got my MSW because I wanted to destigmatize the person who has suicidal thought, attempts, or completes suicide. Unfortunately, shortly after I graduated, I had very severe suicidal intentions and voluntarily admitted myself into a psychiatric hospital. Although I was safe from harming myself, I received only minimal group therapy and a lot of drug changes. The biggest problem was that being in the hospital made me think I had made no progress since my severe suicide attempt, which had been 7 years prior. For the next 2 years, I fought crippling depression, changed jobs 3 times and moved back to the state where I was born. I now have been stable for 4 years and am working successfully in the field of social work. However, I have not told any of my new friends or colleagues here about my past experience. I am working with an excellent therapist now and we are exploring the best way and time for me to “come out” because I am compelled to become part of this movement! Thanks for sharing your courageous story.

    Reply

    • You are welcome, Darlene. I am touched to hear this story resonated so deeply. And I applaud your taking the time to make a good decision about when “coming out” will be best for you.

      Reply

  4. I wanted to stand up and cheer when I read the bit about the peer movement. It also saved me. I met these wonderful people who convinced me (over time, it wasn’t easy) that there was nothing wrong with me/bad about me and I was okay just the way I was. Revolutionary words. After being the identified problem all my life, I was able to reverse the equation and come out with a positive number for myself. The most wonderful thing I ever did was crash a diversity training program for providers with a group of people with mental health diagnoses and some who attempted suicide. Along with race, ethnicity, age, gender etc., we put mental health status on the table as a basis for discrimination. We eloquently told the stories from our own lives that told how other peoples fear of us, patronizing attitudes, not seeing us as people first etc.- made us feel and how it compounded our problems and we gave suggestions on what could have been done instead. We blew everybody’s minds, including our own. I’ll never forget it. Thank you MANPOWER.

    Reply

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