Share Your Label. Share Your Story.

Thursday, October 20, 2011

Our Lives After Labels has moved!

Our Lives After Labels has moved to: (under construction)

Thank you for your submissions and support! Stay tuned!


Saturday, October 15, 2011

Adjustment Disorder Unspecified

Aki Imai

This is my label, and it is strange that my idiosyncracies can be simplified into one phrase. My therapist gave me this diagnosis after talking about the sense of alienation and loneliness I constantly feel in a life of repeatedly leaving places that I considered “home.” However, I want to point out that I also told him that I occasionally hear voices, and that I have cried of sadness immediately after telling him how exuberated I am with life. The point being: if he weren’t the sensible therapist that he is, I could have gotten a worse diagnosis.

While I will never deny that traveling around as a kid was a privilege, simply saying that I was lucky would be to sugarcoat the dark side where I felt stuck in a pit of loneliness. Moving between different cultures set up the stage for me as a walking identity crisis. Every time I moved away and left my friends, I felt torn apart. And whenever I saw them again, they had become completely different people. “Who the hell am I and how do I connect with people?” became questions that occupied my life. Studying psychology was only reasonable as a career path.

So has the path of becoming a psychologist “helped” me? Does psychology help people? Does it ever “figure people out” and determine the best “treatment”? I was initially under the belief that it does – delving into the field further, however, my confidence grew shaky. I find Gail Hornstein’s argument very apt: most theories that students learn are made by doctors and academics who have power over those who are led to believe that they are different. As a student, you are rarely assigned literature by patients who actually go through extreme states consciousness, and are at the mercy of “professionals” who claim more knowledge. When one side dominates the field, those who don’t conform to the dominant discourse will be silenced. Not realizing this sooner, I have made many mistakes as a young student.

For one year, I was working a substance abuse counselor. I experienced first-hand, as a perpetrator, that it’s very easy to cater to a system that categorizes people in crude ways. Clients who disagreed with treatment recommendations are “noncompliant,” ending up in disadvantaged positions where they had to endure treatment longer and pay more money. Whenever I listened to my heart and tried to see clients as human beings, whatever I was doing worked. Whenever I listened to what I thought the system told me to do, I failed. And I failed many times. As a novice counselor, I failed miserably to find the balance between standard protocols and my instinct as a caring human being.

After working as a counselor for a year, I became a graduate student. Learning about the “alternative” perspectives such as those by Bassman, Barnes, Millett, as well as radical organizations such as MindFreedom International (MFI) and the Icarus Project was eye-opening and confirming of my instincts. At the same time, it haunted me with guilt over my past actions, and ignited anger against the mainstream mental health system.

In the summer of 2011, I was traveling with my family around Oregon. I contacted David Oaks, the director of MFI as he was based in Eugene. I only expected to shake hands with whom I consider to be a hero in the survivors moment, but he invited me to dinner where we ended up talking for over 3 hours. I told him about the confusion I feel as a contradictory existence: a psychology student against his own field. What can someone like me do to contribute to the movement by the survivors and critics of the mental health system. Much to my surprise, David said that there were a lot I could do. More surprisingly, he took me seriously.

This encounter eventually led to an invitation to a MindFreedom teleconference. The plan was to brainstorm ideas for Boycott Normal, a campaign where we raise awareness about DSM-5 and the ways in which the diagnostic system creates a dominant culture of normality that oppresses those who those of us who think and feel differently. It was while preparing for this teleconference that I thought about making a submission-based blog. If I can make a space for those who don’t conform to the dominant paradigm to raise their voice about their experiences with psychiatric labels, perhaps we can instill hope in others who are confused with the psychiatric labels. A blog seemed to be a timely medium for these voices that needed to be heard. From reading blogs such as ILiveSweat that tackled sexism in the punk community, I thought, maybe making one blog can make some real difference.

And so I launched Life After Labels (David was talking about collecting “life after labels” stories, so I made that the title). David was very enthusiastic. He promoted the blog to MFI members and we started getting stories. I soon got in touch with Sascha Altman DuBrul, the co-founder of the Icarus Project. He too was supportive of the blog, but asked me why I don’t have my own story up yet. I told him that I was going to write it soon, but I was also scared to tell it, given that my experiences were nowhere near the severity of others. Moreover, I was a person within the system – a cog in the machine. We then talked about identity as one member in the radical mental health movement and the role that each one of has to keep the movement forward. So he encouraged me to write my story. He also suggested to have people who have gone through severe experiences to be running the blog with me, and offered to be one those people. And so here it is, my story. Here it is, Life After Labels, a collaborative project from various people in the radical mental health movement, various people who interact with the mental health system.

EDIT -10/16/11
In the original post, my last sentence was “Here it is, Life After Labels, a collaborative project from everyone in the radical mental health movement, everyone who interacts with the mental health system.” Someone correctly pointed out that not everyone is collaborating for Life After Labels, so the word everyone is overgeneral. I hence changed the word to various people. Thank you for pointing that out!

Friday, October 14, 2011

Joseph Carson

A chemical Plexiglas. A funnybone nerve hell. I push out a few words from my semi paralyzed chest to my psychotherapist Dr. T.B. at the Cambridge Hospital psych unit. I can only choke out haltingly  2-3 words. Catatonia and rigour mortis had settled in. I had asked agonized questions to others on my treatment team. They stay mum about my condition. Finally I yell out my agony. "How can I conduct therapy with you yelling at me like that?", said Dr. T.B. "This is the best I can do", as he doubles my dose of Stelazine. (Thorazine hadn't been enough to straighten me out.)
It is summer 1975 in Cambridge, Massachusetts. Time and again over a few months that summer, I staggered into the ER complaining of my crippling symptoms, only to be turned away with Cogentin. The High Priests of Zombieland have me under their control. I am almost ready to become a ward of the state.

Flashback to the year before. One fine summer day I was ready to go on a hiking vacation for a week from a clerical job in Boston. Blackout sensations followed by a vague feeling of panic. Panic anxiety attacks. "You better get your shit together!" That first day of my vacation, the rejection by a woman companion on top of a history of failed intimacy with woman after woman over the years. This was the last straw! Why couldn't I find intimacy? Why did woman after woman leave me out of disgust and anger and frustration over the years in high school and college? Self-hatred had welled in me like an acid.

After 6 months of  these delirium spells day and night I check myself into a "Group therapy" at McLean Hospital, every mannerism and word monitored by their one-way mirror. Every fellow there could not understand what I was going through. My then Harvard-educated girlfriend lectured and yelled to me, "I will not go out with a pill-popper! Doctors manufacture illnesses. Snap out of it!" I couldn't stand having her leave me.

Slowly sinking into a maelstrom went my life. Despair over ever making a real social connection. I felt my brain exploding into delirium at any time. She doesn't understand. She feels treated badly. Dr. T.B. did say "It shows you are not facing up to something". After a first hospitalization I felt in a fog, my spirit broken. I acted out my despair on my 36th birthday to a staff member on day care at Cambridge Hospital, only to find myself carted off in a body bag to the state hospital. Solitary confinement in a glazed block cubicle. The bare halls amplified the growls and cries of other inpatients.I was another body thrown into a human trash heap.

Readmission to the Cambridge Hospital psych ward, my girlfriend came up onto the ward. Without looking at me she said, "I've had enough".

The drugs took over my life. After discharge I saw my hope drain away as the catatonia and nerve pain turned me into a piece of flotsam..

My folks came from 5000 miles and were sufficiently alarmed by my condition. The staff had refused to answer their questions, saying "It has to come from Mr. Carson". This caused my folks to contact an out of state shrink who said I was never schizophrenic, contrary to my diagnosis. He got me off the drugs cold turkey and in 48 hours I was able to  form a sentence the first time in 4 months. Imipramine (Tofranil) cut the edge off the withdrawal symptoms, while Nembutal gave me a nightly 2 hour time warp (The High Priests, like MacBeth, had killed sleep.)

For the next 4 months I was on a program on a Vermont farm community. This farm was founded in 1932 by a visionary Finn and his American wife to assist those who have been in mental hospitals to support the farm through their "sweat cure" work program. The legend of Saint Dymphna, a visionary saint of 12th century Belgium was put to work: skilled tradesmen and their families accepting such patients to live with them as "guests" during recovery like the forebears of the town of Gheel and its patron saint Dymphna; The only "professional" was the Univ. of Vermont psychiatrist consulting with the farm personnel once a week. The love of the martyred saint herself meant fellowship around the fireplace on support meetings, the throbbing of extremities as we come in from the winter from cutting firewood, cutting ice off the lake, feeding the livestock, collecting eggs, kitchen duty, etc.. The smell of the woods, the snowstorms, the steam from the Finnish sauna, etc.  All were my tonic, neutralizing the poisons from the drugs and the confinement that had passed as "treatment".

Upon gaining my life back I picked up where I left off back in Boston, finding the "Mental Patients Liberation Front" I learned about and met my heroine Judi Chamberlin in her crusade. I had learned the consequences from a misdiagnosis from a team who really didn't know what they were going and tried to cover it up. I had learned the consequences of self hatred that caused me to ask for help in the wrong places. My folks and the self help antipsychiatric colleagues quite literally saved my life.

Wednesday, October 12, 2011

My Stories and I

Sheila Israel
There have been stories for decades now before labels and after labels.  
I think they're my stories, but I don't know for sure.
I didn't sit down and make them up, and I don't know where they came from.  
They played vividly in my mind as if I was only observing them, not creating them.  
The stories are important to me because they have been a place I have gone to remember them when there has been no other hope and because they have been with me longer than any real time human friend and with me longer than labels.
When there were no more stories that seemed to come from somewhere else, I started to create some 
I felt I owned more but still part of them feel like it comes from somewhere else.

Tuesday, October 11, 2011

Courage Grows Strong at a Wound

Paula "vaquous" Stewart

The following was written in July 2011 - I was in a state of panic and very, very ill.

I was very tired and I had not eaten properly for days - this was in 1994. I went to a restaurant with my sister and had an argument. I decided to leave the restaurant abruptly  (Basha on Guy).  I walked so fast that my sister Sylvia did not see me All I remember is walking quickly and I ended up on a “bridge” where I collapsed.  I then remember being in a vehicle and being driven somewhere - I did not know by whom or where I was being driven to.

The next thing I remember is being dragged into a hospital in Richelieu by armed Police and then placed in restraints in this hospital.  I was eventually transferred to the Montreal General Hospital (MGH) once they realized that I had my own apartment in Downtown Montreal.

I was taken to the 4th floor of the hospital, unconscious. They injected me with Haldol. My mother who lived in Chambly took a bus to find me at the hospital. They told her that I had Schizophrenia and that it was a debilitating disease. Therefore, I would not be able to take care of myself.  They then tried to coerce her to sign documents to place me into a Group Home. My Mother was in shock over the condition her daughter was in. They never explained in detail why they felt I needed to be in a Group Home -- she flatly refused to sign any documents.

They gave me pills, took my blood, imposed all kinds of rules on me that I had to follow, in order to be released - They never gave me a release date even though I asked. They kept me in the Psyche Ward for three months against my will. If my Mother did not pay my rent and all of my other bills for the three months, I would have been homeless at the time of release.

I was then forced to take medication for 17 years against my will -- forced to participate in Therapy sessions with two Medical Teams from the MGH and now at the Allen Memorial Institute without signing any documents. Occupational Therapy, Collective Kitchen, Group Therapy, individual counselling -- all against my will. The Medication they gave me was so strong that I was sleeping on average 12-14 hours a day.  My vision was blurred, I was dizzy, forced onto Welfare and with little money - not eating well and I could not work for long stretches of time--- for years.

They say that I have Paranoid Schizophrenia and then the changed my diagnosis to Schizoaffective Disorder without explanation. On many, many occasions I have asked my Medical Team to show me empirical proof that I indeed have these DSM disorders. They told me that there is no empirical proof- no scientific test.  Then I asked them, repeatedly “so how do you know I have this condition?” No answer. I have asked them to observe me without the neuroleptics and to just offer me “talk therapy” instead-- they all flatly refused.  I was also told that there were no natural ways to treat Schizophrenia (See two lists of references from the Harm Reduction Guide to Coming Off Psyciatric Drugs)

Dr. V also mentioned to me, while my social worker was present, that “all neuroleptics are all basically the same with different side-effects.” -- This was said after I told him that I wanted to stop taking these Meds (Zeldox), because I was getting sicker and sicker. He down-played my concerns, although the Zeldox pamphlet mentions to discuss with your health professional if you have any side effects -- I have had over ten side effects listed on their Zeldox Website!

I almost died this year and it was a wake-up call to take action --TO SAVE MY LIFE!

There is a long list of side effects of Zyprexa and Zeldox and many are life threatening (sudden death is one). I told my medical team that I wanted to stop all medication. They denied me my Civil Rights and my Human Rights for 17 years and to this day continue to prevent me from stopping Zeldox.  I have never given INFORMED CONSENT for any treatment I have received or which has been imposed on me over the past 17 or more years.

Because I have been on neuroleptics and atypical anti-psychotics for so long, I will probably need to withdraw over a two-year period -- this is very painful and they never mentioned that I could become so dependant when they administered it to me.

I feel sick daily and have been sent for tests recently, due to my poor health because of this drug (Zeldox).


I have stopped all psychiatric medications-- permanently.

I lost lots of weight and I have gained my physical and emotional
strength back... I am still working through the trauma:)

I am preparing to file complaints with the Employers of my abusers and
Patient's Rights Groups

I am preparing my SHIELD ALERT with MindFreedom International

I have become a Psyche Rights Activist !


I AM THE 99%


Finally, I want  to say the following:

Although I was forced-drugged for 17 years, I still am an eternal optimist and I have hope for my future.

I also have lots of love in my life (No money to speak of :(...but love)

I am very smart, happy and ready to make a big difference in the World.


The title, "Courage grows strong at a wound" is Paula's clan motto: 
Virescit Vulnere Virtus

Monday, October 10, 2011

My Story


My story started when I was in my late forties. I had pressure on my chest following a migraine headache. My sister said to go to a hospital and have them completely check me out.

So they asked if I wanted to see a psychiatrist. I said yes, not knowing what they do with drugs . After all, I have been friends with a psychiatrist for many years and he didn't see anything wrong with me.

So he started to write a script for me, to which I said I don't want meds. He asked if I wanted to stay the night. Thinking it was for the pressure on my chest, I said ok. I figured they were going to monitor
my heart. They walked me to one floor where I realized it wasn't the right department. I panicked. I asked for my daughter not knowing what they did with her . She wasn't there with me, although she came with me. The only other person who knew about the hospital was my soon to
be ex husband. He became close friends with my friend who is a psychiatrist and I wonder if they didn't arrange my permanent visit. Divorce was not acceptable to him either.

Up until that time I worked for many civic programs, worked for the police department doing a school crossing and was a stay-at-home happy mom. I had hobbies of stained glass design, went to college and enjoyed gardening in the summer. I was helpful to the neighbors and got along with everyone.

After the drugging, my life changed drastically. I became totally dysfunctional put on a hundred and thirty lbs, got cancer and lost all my friends and family. The label destroyed me totally. Today I have a doctor who is supportive to an extent. And we compromise. He knows the danger of cancer and psych drugs but has rules he goes by too. When I'm seeing him I do a little better, not to mention the post traumatic experience of all this and my violent spouse during those times. So I have to say the uplifting and understanding support of my peers have always been my source of strength and health. MindFreedom was there for me first. and I am eternally grateful for that.

The Space Where Icarus Flew

Ken Paul Rosenthal

I stood on the bridge

I howled at the stars

Tried to deposit my madness

In a bank of fog

Tried to navigate between

My brilliance and my blues

In the space where Icarus flew

In the space where Icarus flew

I’m porous and plastered

And split to the core

I’m wired to the manic static

I’ve hit transparent doors

I lingered in the labyrinth

‘Cause I didn’t have a clue

In the space where Icarus flew

In the space where Icarus flew

They say you gotta write

Or be written upon

Seems no can read me

Seems I’ve become withdrawn

I broke the holey tablets

That cure was much too cruel

In the space where Icarus flew

In the space where Icarus flew

I walk into the fire

I run from the rain

The world says I’m crazy

But the world’s insane

Wings of wax can melt

And wings can be renewed

In the space where Icarus flew

In the space where Icarus flew

Gravity, gravity

Pounding on trees

I’ll unscrew my downward spiral

With the tools god’s given me

With a pen and a paintbrush

And a map that I drew

In the space where Icarus flew

In the space where Icarus flew

The eye of a hurricane

Is blind to its limbs

No medicine can levee

The storms that swell within

Got to roll with the tide

Got to rise with the moon

In the space where Icarus flew

In the space where Icarus flew

My candle burns at both ends

It will not last the night

It waxes as it wanes although

It gives a lovely light

Crooked and beautiful

It’s just my flickering mood

In the space where Icarus grew

In the space where Icarus grew

c. 2011 Ken Paul Rosenthal

Check out Ken’s film, Crooked Beauty: