Labels are words and they have meaning, but the meaning isn’t always accurate and often it is harmful. Some words get cluttered with poor information, some words don’t do their job. Some words are, at this point - given what we know, full of malfeasance. Still, these words tell us who we are and we act in accordance with them or in defiance of them, always dancing with external definition, sometimes deeply oppressed by the words that have been laid down and all the meaning that they carry.

To me, we’re all just Mad. Neurodivergent. Whatever. We are who we are and we are who we say we are, depending on to whom it is said and in what context. Thus, I just try my best to be honest. I’ve had to learn a lot of emotion regulation and communication skills. My archives of “Social Situations and how to behave” has exhausted itself and so I usually just do what I feel like might be appropriate, by watching other people and following suit. Often, what they are doing makes no sense or I don’t like doing it and so I then, again, just do whatever I feel like doing and I try to be intentional in doing it, considering all things.

Yes, it all gets very complicated, doesn’t it? 

When we give things names, we stake our claim and we assign our world meaning of our own creation…and often this meaning tells us absolutely nothing about what we have named, only that we have named it.

Faith Rhyne and Rylin Mariel

What starts here is part 1 of an exchange of letters between Faith Rhyne and Rylin Mariel - Aki

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A friend of mine sent me this message today and it brought up a lot of things that are worth considering, about labels, function, and implication:

I just wrote the DSM board about the proposed changes to the Dx criteria for Autism, and I thought you might be interested in reading that…

“I have Asperger’s Syndrome, diagnosed three years ago, but I’ve been told that I would likely not meet the criteria for Autism under the new DSM, because in superficial interchanges, I’m able to interact with others without much *apparent* difficulty. If you downgrade people like me for being able to ‘pass’ so to speak, then you’re overlooking the stress that it causes people like me to do this, day in and day out, never really being sure that we have said the right thing or made an odd gesture, etc. Many with Aspergers/HFA may know how to “act” in a job interview, for example, but we don’t know how to ‘act’ day in and day out to be able to relate smoothly and naturally with co-workers. There were a couple of jobs I had where co-workers intentionally scapegoated me and got me fired, because they were annoyed by my ‘oddness.’ More frequently, in other job situations which I did hold for any length of time, people began to treat me as a plaything, finding enjoyment at my expense by talking about me with innuendos I did not get. I would stand there discomforted by their laughter - they were definitely laughing at me, not with me, that much I could tell. 

I have observed, from both talking face to face with and corresponding with females on the high end of the spectrum, that we’re much more highly motivated to fit in, and often go to great lengths to learn normal speech patterns, but this is generally in the same way that an actor learns to play a part. …a woman with Asperger’s can appear to the clinician to be within the normal range, and even convince many she interacts with daily that there’s nothing out of the ordinary. So, the criteria that the communication deficits must be across contexts is not met, and yet there are many contexts where communication is not sufficiently “normal” to avoid setting off another person’s internal, hardwired “difference alarm”, because the innate tendency of “normal” people to play dominance games, and to scapegoat those who are different, is so unconsciously ingrained that they are not even necessarily consciously aware of it. Thus, people at the high end of the spectrum can be victimised their entire lives, even once they reach the level of casually apparent ‘proficiency’ in communication skills that they may pass the muster of the evaluating clinician. This would be especially true of someone such as myself: I have an extremely high verbal IQ, particularly as relates to the use of written language, and I studied words and writing intentionally for many years to make up for my spoken word deficits. I made myself use language in a more and more challenging and complex way, as a compensatory strategy, and eventually I became able to speak with some degree of articulateness, and occasionally even eloquence, when I might be talking about a subject of perseveration. There are still times that my prosody is kind of odd, but as long as I don’t become too intimate with your average persons, or they don’t ask me unexpected questions, things are fine. 

… if you rule out people like me, based on superficial presentation, you eliminate critical support systems they can access in college, and that can mean they can’t even get a college education, without accomodations (like solitary testing environments, being allowed to record lectures, study aides, etc.). A college education in the appropriate field can make all the difference in functionality in life. The extra help, plus career counseling that benefited from awareness of my Dx was something I didn’t get, in lacking that diagnosis earlier in life, and I spent a lifetime floundering in inappropriate jobs, getting fired repeatedly.

Don’t cut off aid and support to hundreds of thousands of people with Aspergers by shaving us off the top of the criteria for Autism, based on our ability to “act” like “normal” people! There’s a lot more to life than that, and we really just can’t expect to get that on the instinctive natural level, where we can be unnoticed and self-confident in all kinds of situations. For the average person with an ASD, there is no cure - even for a person like me with a very high IQ, there’s no chance I will ever stop feeling that there’s an invisible wall between me and most others (what a gift it’s been to finally get in a group with others on the Spectrum, just recently), and that has a lifetime impact, no matter how “normally” we may seem to be able to present ourselves, in a clinical setting. Don’t pull the metaphorical rugs we need out from under our feet! I understand that I and others already diagnosed are essentially “grandfathered” in, but I feel great concern for others who haven’t yet been diagnosed, particularly women who have flown under the radar, so to speak, and missed being diagnosed because of allegedly non-autistic presentation. “

Original Article

Fall 2008 was probably one of the lowest points in my life. I came to Adelphi University as a freshman and I was struggling with an eating disorder, and feelings of depression. I was also extremely ostracized from my classmates as I was a theatre major and studying in a field that encourages competition and ego. I have seen a slew of psychiatrists and they all diagnosed me with different things, without really listening to me. I went to the Student Counseling Center to experience basically the same thing except a lot worse. Of course I thought: “This time I will have clarity, this time I will have the right diagnosis and the right medication. The right doctor.” There was this psychiatrist, let’s call him Dr. X with whom I scheduled an appointment.

Within two minutes of seeing me Dr. X already started prescribing pills. I was on Zoloft and he had told me to just stop taking Zoloft all together, without weaning off of it. He suddenly prescribed me Topomax which is a “mood stabilizer” he had said in his obnoxious accented voice. So after one day of being Zoloft free, I went to the pharmacy and discovered that my Topomax was not there. The doctor had not authorized it with my insurance company. I was too far gone at that point to care. At that point I was looking for a solution and I trusted just anybody. God forbid I actually trusted the doctor to help the sick person.

Within the two days of starting the Topomax, I ended up in the hospital after a suicide attempt during a weekend home in Connecticut. I do not even know how the almighty Student Counseling Center found out about it, but they did. I took a week off from school. I was obviously hurting and needing to talk to somebody, so I called Carol Phelan, director of the Student Counseling Center. I had trusted her before, when I was vulnerable, so I thought it would help. She said she would not talk to me any longer unless I signed a contract, through email which would give my file over to the Dean of Student Affairs Jeff Kessler. Of course I bought into that. Even typing this now, makes me grow warmer with hurt, thinking of how conniving and how cold she was to do that, when I trusted her. If lying to and manipulating someone is not maltreatment I do not know what is.

So before I knew it, I had “meetings” with Kessler and “Doctor” X and all of these people. To make a long story short I was told I would meet with him to “discuss my future plans” There was definitely no discussing, because within two seconds of seeing me -before even hearing my voice- he said he was kicking me out of the school. They called it “emergency withdrawal”. Wow, I thought who is doing the withdrawing, and how did this Dean suddenly get the power to decide my fate? Dr. X was an amusing player in this as well. He suddenly started spouting off everything I told him in our sessions. Wow, I guess the whole doctor patient confidentiality thing is a fallacy now, I thought. Then he got up and said he had “another engagement” to go to, and said he wished me “well”. I want to spit at him just thinking about it. They all talked about how they wanted what is best for me and they want me to be “safe” I just looked at “Dean” X and said: “You don’t want blood on your hands.” I have been told by many people that I should not have said that but I don’t regret it one bit. Those people, those three, ridiculous, ignorant people, do not care one bit about me. Nor can I even begin to know one bit about me or what I went through. They do not care if I walk off this campus right now and take a chainsaw to my wrists; just as long as I don’t do it on their campus. They do not want to be a liability. They do not care about my safety, or my well being, they only care about their own. I was not a face or a person to those people, I am just a student, just an abundance of tuition money that they can easily get rid of, and I am sure that they were thrilled to. Getting rid of me was as easy as pushing a button to them. I also find it quite convenient that they waited a week after the tuition refund deadline to “withdraw” me.

I was allowed to go back in Spring 2009 if I was evaluated by an “At Risk” committee. At Risk? I am not a bad kid. I have never been a bad kid. I am just a person who has gone through difficult times in their life just like everyone does. That is scary to them. (Maybe it’s just TOO human for them). I decided to go for it, because I deserve to be in school having my own life.  That took a lot of swallowing of my pride. The At Risk committee is a group of faculty members evaluating whether or not I am “well”. It’s kind of funny, how easy it was to outsmart a bunch of college professors.  By the grace of the almighty Dean Kessler, I came back to school. I had to be under a contract, which was the most preposterous looking thing I have ever seen. I had to agree to be in therapy and have a “safety plan” and a bunch of fallacies. To me it is just their way of wielding their power over me, even though it is meaningless. I also learned a little something about, Topomax. It is an anti-convulsive medication. It is for people with epilepsy. And you are not supposed to just suddenly take it. It sounds horrible, but what I am discovering is that I am one of the lucky ones.

Since writing the first draft of this essay, I’ve discovered many friends of mine who have also come into contact with Adelphi’s student counseling center. Their stories include being pressured into “voluntary commitment”, being prescribed appetite increasers and weekly weigh ins in front of Dr. X  to “cure” their anorexia, being called the cops on them to be taken away in an ambulance when saying something that didn’t sound “safe”.

We live in fear of people like me and my fellow survivors. We don’t get supported in our looking for help nor do we get a listening ear. We get sent away in an ambulance, or prescribed something, or kicked out of school. But we are still here and these issues, even though they remain unaddressed, are not going away. I am very fortunate however, that I was able to find the tools I needed to overcome my problems.

I want to thank you for giving me the opportunity to write about this experience. Now I can look back at this story and put a name to it. It is oppression and the players in the story were the oppressors. I am a psychiatric survivor. When asked at the 5-5 protest who I was and what I was studying in school for the first time I was able to say proudly “I am a theatre major at Adelphi University. The same school that tried to kick me out. They haven’t succeeded yet.”

Original Article

When I was diagnosed bipolar i was around 20 and I lived in the ‘poor me’ mode for long- long enough to not expect anything better, with marriages breaking, no career in sight, socially ostracized, marginalized and without friends for long parts of my life. And the only one thing that I kept holding in my hands was my instrument, and the belief that I was an artist.

Today I am finally one, including having recently performed in my first overseas concert. Through all the storms that wreaked through my life i did two things- one was sticking to music and the other was continued studying no matter what. At last that point has been reached, nearly two decades later, that my writing is now being published in peer-reviewed journals, including about my own self, am a social scientist who researches in mental health, a musician who works in mental health, and of course a dog woman.

I am sharing one song of mine here
http://www.youtube.com/watch?v=lo7220KtpRw

This is a sample of the sort of music I composed when I was in severe depressions. It says that “alas, another draft of some wind of pain descends upon me, and wherever i look another reason to weep comes my way”

I am one of the biggest examples of someone who used her music very mindfully to bring about her own inner and then outer transformations. And I do believe that everyone can accomplish that- this is the fundamental premise on which my current research in social construction of mental health is rested. It was music for me, it maybe something else for you.

Just find a reason to connect with yourself, your deeper- soul side and then whenever there is too much of turmoil in the world around, recede there. Of course my own research and story is so big i cannot squeeze it here, but i just want to say that each one who reads this is capable of recovery and reclaiming themself; once they decide. Never underestimate yourself. And this comes from someone who has walked the entire length of the labyrinth.

Best wishes to all of you and happy trapezing- for that is what it is, as long as you learn to enjoy and not lose balance.

Recently I came out - not as gay, though the response might have been somewhat similar - but as a non-compliant non-service user.

I quickly realised that I no longer fell into any of the pre-existing categories. To be fair, the occasion I chose to issue my heretical statement was amongst many of my friends and acquaintances who were very supportive, though worried about the ramifications on other impressionable and still compliant individuals.

Shouldn’t I be more careful in case I presented as a dangerous role model? Wasn’t I worried that others might try coming off their meds with disasterous consequences? I do try not to evangelise, because each individual should be allowed to work out his/her own toute to salvation. That might be religion; it might be medication; it might be some form of CBT: whatever works for them. But I refuse to recant (note the religious analogies). I might as well have been denying the existence of God in front of the Spanish Inquisition!

Only nowadays those with “insight” are all psychiatrist-fearing as opposed to God-fearing. My diagnosis twelve years ago was “bipolar”, though responding to the presenting symptoms, if I’d been the psychiatrist, I’d have gone for “Schizophrenic” - that is, if I’d seen any point whatsoever in attaching a label. Now that I have subsumed my psychotic experiences into my new identity, I’m quite content to be, “This is me, warts and all: take me or leave me!”

I was dealing with a thyroid problem and on meds for it. I went to work and felt dizzy, so I called my sister who said go to a hospital and ask to see every doctor there . Instead, I went to my doctor and he said I was having a reaction to my thyroid meds. He said he’s seen this happen. He said don’t go to a psychiatrist they wouldn’t understand the thyroid problem. I also had pressure on my chest . After having a migraine headache in addition, I went to the hospital. They asked me if I wanted to stay the night. I thought to monitor my heart, so I signed papers to be admitted. I didn’t read what I signed as I would have needed a lawyer to understand it.

They walked me up to a mental ward where I realized that was not the real hospital. They drugged me with cocktails - I never used drugs previously so these were really hard on me. After staying a month, I went home. I was in the process of getting a divorce, but my husband then thought what a good idea it was to keep drugging me to continue his abuse. So he would hit me then quickly call the police and tell them I was a danger. No questions asked, and pepper sprayed out of a shower, I found several cops watching me get dressed. Only one didn’t look. This repeated itself for years until my divorce was completed. Our funds were frozen and it was about ten years of abuse. I went through cancer treatment with all this turmoil and moved. I found police and sheriffs sitting in front of my new house in their cars and on many occasions they would get me and take me to the hospital, for using the internet and doing civic activities they frowned on like a petition to override a gov veto, or posting mind freedom info in the library. People I don’t know would say we don’t want you here. I was quiet and kept to myself wanting only peace after such a terrible drug divorce experience.

For years, I was watched by police. It wasn’t until I got a case manager from the hospital that they stopped bothering me, but now I have to see her for my monthly check up by her to give the outpatient her approval. and she does, but it is annoying and an invasion of my privacy . I do well until all the checking up starts then I get a PTSD attack and have to start my recovery all over. It took me eight months to get over the trauma of the in patient treatments the last time .

Recently I was invited on public radio to talk about mental health reform. The guests were a revered doctor, a lobbyist and me. The host introduced me as an “ex-mental patient” and I didn’t even flinch. It’s become part of my livelihood to talk about what madness feels like and what is left when the madness is over. But a few of my friends called me on the phone sounding unhappy that I would be described in such a way. It seems that the words” mental patient” bring images of hospital gowns and electroshock eyes, a land of no-return.

It’s uncomfortable. I don’t love talking about such things, but I can’t stand hiding even more than that. My boyfriend points out that even Tony Soprano had a shrink. The human condition is an emotional one.

There was a time in my life, while living in a yellow farmhouse on a thin country road, that I tried to lift a black demon from my chest, but he just kept pressing down. When I pushed up he pushed me back down and hard, with a strength that was supernatural.  I had tears streaming down my face and I begged the white winged angel in the doorway to envelope me and he did. The scene was something I’d seen Mexican paintings, the little black devil that comes for a soul when one lies dying. Except I really wasn’t dying and I really wasn’t dreaming. I was trying to sleep in my bed next to my boyfriend and if he were awake he wouldn’t see what I saw. All he would only see my struggling and crying.

I keep this story with all the other stories that no one wants to hear. If I meet you when I am well then you don’t need to know all details.  If I meet you and I am low then you would know better than to ask.

What I’ve cobbled together as an adult life is inspired by this. Make myself a fairy tale life and step into it.  A little tin roofed house in the country with paper flowers covering the dining room walls, crinolines under skirts, 2 wild, blond children, a white cat, a hedgehog, some homemade raw chocolate ice cream and Edith Piaf records. If I must weep I’d rather weep here.

These days I do everything that I know brings health and move away from everything that is crazy-making (most especially the skipping record in my head).  There is yoga and there is self-love and there is the time I make for friends. There is my absolute belief that life is no longer cruel when we leave this body. Nothing is fair but nothing is permanent and while we are here we have to accept all that comes to us. Also I give myself absolute permission to be miserable until I’m bored with it.

As a job I talk about mental health: how to improve services, what it means to be sane in an insane world, how I get by and what inspires me. I know that people get well. I know women who have spent long stretches in the hospital and now hold positions of power and keep their families together. I know people you would never accuse of being crazy who’ve heard voices and overdosed on pills. It is my work to get these people in front of students of social work and psych nursing so they can tell their stories.

It seems like the last taboo, the thing one just does not speak about. And for whatever reason, I can’t shut my mouth.

I am not ashamed of what I am.. OR what western medicine THOUGHT I was for 17 years, and how I suffered through it. I kept fighting. I kept believing there was a deeper truth, something that remained hidden. Turns out? I was right.

Check out my experimental performance singing piece, set to Annie Lennox Songs, about Western Medicine, Pills & psychiatric diagnoses

This is a musical performance by my friend Wyatt. He talks about being locked up in a hospital after his suicide attempt. He sings about the pains of his life, trying to end it all, and then surviving through it.
You can find more of his music here. - Aki

And I stared in the darkest corners just for fun, I took acid and confronted my own sanity and won, I sparked smoke signals with a broken shaving razor blade. And I spray painted “smash the state” on a corporate chain and “fuck patriarchy” on a wall I pass by every day when I’m driving to work in the morning. And I get a little more excited each new day, a little more nostalgic every time somebody moves away, a little older each time my address changes. And I still get freaked out when I remember that the father of my sisters is the man that beat my mother and my heart breaks for her and all of those times I heard her screaming.

And I saw something staring from across the parking lot, I took pictures of my wooden ceiling fan because I thought someone was sending me a message through its orientation. And I found out secrets that I wasn’t meant to know and I feel guilty that I know you were molested but you’re so inspiring to me and I wish I could thank you. And I don’t worry anymore whether or not I am insane, I know that we’ve all got the same hearts and just slightly different brains so why am I so scared to tell my male friends that I love them. And I tried to be the pink ranger but my father he forbid it, I cried every day in school and he just wanted me to quit it, I still have the letter he wrote to me after I tried to kill myself.

I get a little more excited each new day, a little more nostalgic every time somebody moves away, a little older each time my address changes. And I love every single moment I’m alive and I want to give you every single second til I die. I’m learning to believe that I am capable of being loved.

Original Article

Original Article