Overcoming the Impossible: My Journey Through Schizophrenia
Source: Psychology Today
Psychologist Ronald Bassman, once diagnosed and treated for schizophrennia, brings new hope to patients and families.
The seclusion room was empty except for a mattress covered in blackrubber on the concrete floor. They lowered me onto the mattress andturned me on my side. I fought their grip on my ankles and wrists, butthey were too strong and experienced. I quit struggling and stared atthe wire-encased ceiling light. I couldn’t see the nurse when she camein aid, “Get him ready.” They quickly pulled my pants and underweardown to my knees. I winced at the violent thrust of the needle. I triedto prepare myself to fight the onslaught of the thought-dulling,body-numbing Thorazine.
They waited for the drug to take effect before they stripped me of myclothes. I was left naked in the seclusion room, and no explanationswere given. They did not tell me how long I would stay there.
Three decades have passed since I’ve had any kind of psychiatrictreatment, yet the memories remain. Even after more than 20 years ofwork as a licensed psychologist, the nightmares have not disappeared.The dreams of endless wanderings through gauze-shrouded hospitalcorridors, the disembodied screams, and the smothering restraints andseclusion were not overcome by my successes. Those haunting memoriesonly ended when I was finally able to use all of my experiences, when Iwas able to stop hiding my psychiatric history, and when I could speakpublicly about my own treatment and transformation. Now I understandthe importance of sharing what I learned from living and working onboth sides of the locked door.
I am just one of many who have suffered psychiatric torments from aninadequate and often destructive mental health system. The journey thatbrought me to this place of credibility enables me to offer myexperience not only to those who have the power to bring about change,but also to those who feel powerless and need inspiration. My goodfortune allows me to challenge the prevailing psychiatric model. Whenyou become a mental patient, you are no longer regarded as a wholeperson with an individual mix of strengths and weaknesses.
When I was discharged from the hospital I was told I had an incurabledisease called schizophrenia. The doctor told my family that my chancesof being rehospitalized were very high. is medical orders were directedat my parents, not me, and stated wit an absolute authority thatdiscouraged any challenge. He predicted a lifetime in the back ward ofa state hospital if his orders were not followed.
“He will need to take medication for the rest of his life. For now, youneed to bring him to the hospital weekly for outpatient treatment andhe must not see any of his old friends.”
I was devastated.
The hospital doctor put me into a coma five days a week for eight weeksby injecting me with insulin. Those 40 insulin treatments combined withelectroshock blasted huge holes in my memory, parts of which have neverreturned. I ballooned from 140 to 170 pounds; I appeared the clown inclothes that no longer fit. My already damaged self-image had plummetedto an unrecognizable depth, and the heavy doses of Thorazine andStelazine made me feel like I was walking in slow-motion under water.
Was the doctor joking? Not see my old friends? How was I going to facethem and explain what had become of me? Did anyone really think that Iwas capable of making new friends? I was sure that they would havenothing to do with me. But the most disturbing of all the orders was tohear him say that I would never be free of the hospital’s control.
My best friends were once locked up in mental hospitals and foughttheir way back. We are psychiatric survivors. Some believe thatpsychiatric survivors defy the odds. Or maybe we were never reallymentally ill, just misdiagnosed. After all, they say schizophrenia is alifelong disease. Such reasoning makes my peers and me look likeexceptions. Among our large group of closeted ex-patients are lawyers,teachers, mechanics, doctor carpenters, plumbers and psychologists. Weare your neighbors, ministers and friends, living and working in yourcommunities. Many thousands choose not to reveal their past.
People diagnosed with schizophrenia in ThirdWorld countries have higher rates of recovery than those who live inFirst World nations. Why is this?
I choose to speak and write about my experiences so that others whohave been diagnosed and treated for serious mental illness will be ableto see new hope and possibility. After speaking engagements, I oftenget call and letters from people who at thankful that someone isspeaking out They hide their past just as I did, but go on with theirlives without anyone but their friends and families knowing about theirpsychiatric histories. Sometime psychology students ask for adviceabout whether they should disclose their past
They are stung by the insensitivity and misinformation perpetuated intheir programs. But those students suffer silently. They know it is notin their best interest to disclose their histories if they expect tosucceed.
For the past five years I have presented psychiatric survivor concernsat lectures and symposiums at the American Psychological Association’sannual convention. I have tried to connect with other psychologists whohave been diagnosed and treated for major mental illness. At the annualconventions, I hold a meeting for psychologists who have psychiatrichistories as well as those who are interested in serious mentalillness. I have tried to make it a safe place for people to meetwithout feeling that they are at risk of being exposed. They can chooseto participate as an interested psychologist if they feel uncomfortableabout revealing their experiences.
Over the years, psychologists have come to our meetings and talkedabout their experiences as mental patients. Some disclosed their pastfor the first time. But in this organization comprising more than130,000 members, with an annual convention that draws between 20,000and 30,000 psychologists, only 15 have felt safe enough to reveal theirhistories.
Do we recover or are we transformed by our experiences?
Some of us think of ourselves as recovering or recovered. Others likemyself see it as a process of transformation. Like other psychiatricsurvivors, I feel dutybound to share what helped and hurt me so that wemay eliminate the ineffective treatments and abuses of the mentalhealth system, and help make our communities more supportive andinclusive.
Yet how does one climb from the depths? Research from around the worlddocuments high rates of complete recovery from schizophrenia. The mostextensive study, known as the Vermont Longitudinal Study, followedpatients for an average of 32 years. Lead researcher Courtenay Hardingof the University of Colorado studied the most “hopeless” patientsdiagnosed with schizophrenia: the feces-smearing patients who barelydressed themselves and had forgotten how to tell time. Harding reportedthat 30 percent of these patients had fully recovered. Theseex-patients were symptom-free, employed, had a social life and did nottake medication.
During my own struggles it would have been extremely helpful to haveknown of this optimistic research. Yet even with such remarkablefindings, the common belief remains: Recovery is rare or impossible. Inforums and presentations, I’ve shared these research findings and foundthat most people are surprised by the results.
Another study conducted by the United Nations through the World HealthOrganization found that people diagnosed with schizophrenia in ThirdWorld countries have higher rates of recovery than those who live inFirst World nations. Why is this? The thinking has been that familiesin underdeveloped countries need each member to be productive.Therefore, there may be greater tolerance for people who look and actdifferently. These people are necessary to their families andcommunity. They have value.
What makes recovery and transformation possible? Unlike the research onrecovery rates, there is little quantitative research on what promotesrecovery. To determine what is helpful, we are guided by qualitativeresearch gathered from people willing to share their stories.
In the Vermont study Harding asked people, “What really made thedifference in your recovery?” Many of them answered similarly. Theylooked down at their feet, shuffled around and said something about aperson who told them that they have a chance to get better. Havingsomeone believe in them translated into hope. Without hope, death canestablish a foothold. Hope fights fear and nurtures courage. Itinspires vision and the work required to realize the unattainable.
Pat Deegan, a psychologist and psychiatric survivor, was diagnosed withschizophrenia at 17 and hospitalized nine times. She is currentlydirector of education at the National Empowerment Center in Lawrence,Massachusetts. When Dr. Deegan talks about recovery, she often tells astory about how her traditional Irish grandmother reached out to her.When she was discharged from the hospital, Pat spent days sitting in achair doing nothing but smoking cigarettes and drinking Cokes. Everyday, her grandmother came in and asked her if she wanted to go to thegrocery store with her. It was not a demand, just an invitation forcompany. For months Pat refused. One day she agreed to go with hergrandmother, but stipulated that she would not choose anything or helpin any way. It was a beginning. Her grandmother valued her company andbelieved that she could do more.
It isn’t one person or incident or clinical intervention that iscritical for change to occur. Instead, it’s a complex process. Oneessential factor is keeping the spirit alive. Connecting with othershelps: Receiving respect and warmth breaks through the isolation andhelps you feel worthy and alive.
Deep in the recesses of our being there are safe sanctuaries, securehiding places for salvageable dreams. Anger sustains our stubbornrefusal to accept others’ dire predictions. Anger protects our hopesand dreams.
Author and international lecturer Judi Chamberlin writes proudly andsardonically about having been a noncompliant patient. Noncompliantpatients receive the worst and potentially most harmful treatments. Wehave been locked in seclusion, placed in restraints, chemically andphysically straitjacketed, lobotomized, shocked and beaten because weprotested too much. If we were lucky enough to escape permanent damage,anger helped us. It helped us fight for our rights and shun the role oflifelong mental patient.
Anne Krauss, a psychiatric survivor working in the mental health fieldin New York tells an illuminating story of the effects of suppressinganger. She worked as a peer advocate in a state psychiatric hospital,and on one occasion she was in the ward talking with a patient for whomshe was an advocate. Knowing that her complaints were legitimate, Annelistened respectfully to the woman as she angrily complained about notgetting what she wanted. At the time, a psychiatrist assigned to theward who knew both Anne and the patient walked over and placed himselfbetween the two women. He faced Anne and said, “You know, some peoplejust don’t know that they should not be angry with people who aretrying to help them. They would get along much better if they showedmore respect.” After he walked away, Anne resumed the conversation. Thewoman was no longer lucid. She ignored Anne, and began talking to thevoices only she could hear. Anne was stunned by this example of theprice paid when you are forced to bury your anger.
When emotion is actually felt and expressed,you suffer the staff-imposed consequences. If you cry, you’reconsidered suicidal. If you’re angry you are aggressive and dangerous.
Darby Penney is director of the Bureau of Recipient Affairs for the NewYork State Office of Mental Health. In her cabinet-level position, shesupervises a staff of 14 and reports directly to the commissioner ofthe world’s largest mental health system. Darby tries to infuse herwork with survival lessons she learned during her stay in psychiatrichospitals. In the hospital you are asked to talk about your feelings,but when that emotion is actually felt and expressed, you suffer thestaff-imposed consequences. If you cry, you are considered suicidal. Ifyou’re angry, you are aggressive and dangerous. And if you are laughingtoo happily, you are manic and need to be sedated.
Each of us defies set formulas. The timing and options are differentfor each of us. What is helpful is the right to take risks-theopportunity to fail or succeed, as well as the freedom to makedecisions and choices. Without risk, without choice, the whole processis perverted into, stabilization and maintenance at best andincarceration at worst but never growth and development.
When people who have been diagnosed and treated for serious mentalillness work and play side by side with others, they will be seen andvalued for who they are with all their strengths, weaknesses andfoibles. By demystifying madness, we can begin to appreciate thebeautiful gifts that diversity offers to everyone.