[June 25th, 2014: Meh. Maybe I won’t do that after all…)
[June 21st, 2014: I have decided what I will do. As I read over this the other day, I noticed there were a few typos and some phrasing that just fell flimsy. “I only wanted peace.” Really? That’s all I wanted? The only thing I wanted? I know for a fact that I also wanted revenge, vindication – among other things.
I am going to correct the typos, but I am going to leave them evident, crossed through in the way that this platform allows, so that the original words may still be read. I may also add additional text, because – as long as this is – it is a fraction of the story and some of the most important parts are absent. Additional text will be noted, as this is [date: in brackets]
I will likely find more typos, in new words I write, and I will correct them, too…and add even more words, until I feel that this telling is told honestly, fully.
The only way to really do that is to show the changes that are made, and to make note of the things that come to mind when, for example, one considers the phrase, ‘…the ache in the arm.”
In about a month, I will have been keeping this record for five years. That’s a long time, by some measures.
By other calendars, five years is nothing. 1826 days.
I was married for longer.
Today, and for the next 6 days, I am at the beach.
I wrote my first post for this record here, at this house, sitting in the backyard, typing a message to myself.
This afternoon, when I walked out to the beach, I saw a thick channel of roiling grey hanging over the sky, in an arc like the sweep of an arm, originating somewhere out past the horizon, a dark sweep against the blue. Families played in the waves and my knees itched, buzzed. I found my children in the ocean, felt nervous wading into the charged water.
“It feels like there is lightning in the sky.”
“We’ll get out if we hear thunder.” The wet-haired heads spoke loudly.
“What if it’s too quick? What if is right on top of us?” I looked at the dense plume of storm that was stretching its way toward the warm inland air.
“Sometimes you can’t tell when it’s coming. It all happens at once.” ]
The plan was to make a mini-zine of this, send it to a meeting with my mother. In the end, I only made one booklet, handed it to her, with 9 copies of the cover letter, which I asked her to make available for people, if she introduced herself and wanted to perhaps mention that I had asked her to attend.
The next day, she said, “No one introduced themselves.” I understood that this meant that she had not mentioned my absence, would not – as it were- participate in my art project or support my participation by way of correspondence. I understood that, again, in her own trepidation, she had effectively de-voiced me. Or, at least, I understood that I could think of it in those terms, which I did – for about 5 seconds.
Then I realized that I didn’t much care, and that I could have gone myself, if it were more important to me than swordfighting, which it wasn’t, at that particular moment. I defeated a glave-wielding man with a bandanna at around the same time the meeting ended.
It’s so remarkable to me that this big collection of words, the closest to a linear chronology that I have written – though this is not, as you will see, necessarily a good thing, and – as it turns out – trying to tell any story woefully reduces it to the mere anchor events, with no talk of the hours spent trying to photograph a firefly, or the particular ache in the arm, the smell of sheets and dirt, little mention of the entire universe of memory and impression and association that can open up with the name of a single flower.
Only the pivotal, only the most obviously defining, the most peculiar moons, gifts, and misfortunes.
…anyway, it is remarkable to me that this arrangement of words is only 6 hours or so hours of my life, staying up late, emailing myself, waking up early and copy/pasting the replies to me together, taking out some things, adding others. I feel like this is one of those pieces of writing that I will regret, because it is so personal.
However, there is something to be said for being “out with it” in one fell swoop, even a swoop as quiet as this one may fall.
I walk so many fine lines these days. Aspects of my identity and professions collide. My needs conflict with what is asked of me.
Please be aware that, due to the nature of story, elements of this writing may be triggering, depending on one’s own personal experience.
To Whom It May Concern,
A few days ago, I received a digital invitation to attend a NAMI community education event regarding The Impact of Mental Illness on the Family.
My initial reaction, as a community member, was, “Hey, I should go to this and represent trauma-informed and recovery-oriented psychosocial perspectives on mental health and human struggle! I should go and listen to what they tell people, so that I can better understand where they are coming from, what ideas they are communicating. It’d be nice to see some of those folks.”
Then, I thought about it for a minute, and remembered the way that NAMI impacted my family when I was believed to be in the grips of a mental illness. I reached out to my community in the Asheville Radical Mental Health Collective and spoke with them about how conflicted I felt, how complicated it was, this question of how one can effectively participate as an advocate within cultures and systems that have caused them harm, that have even hurt their children.
I decided not to attend the community education event, because I felt that it may – to be honest – be too upsetting to listen to people talk about brain diseases and appropriate medical care, not seeing one’s child at all. I would do what I what I usually do on Tuesday nights, which is go to swordtraining in the park, as part of my process of healing somatic and psychological trauma and re-empowering my strength in body. I knew, however, that I needed to somehow acknowledge, to somehow participate, that this community education event was taking place in the town that I live in.
So, I sat down and started to write.
My intention was to offer a brief explanation regarding ethical dilemmas, with some acknowledgment of personal harm, but mostly a concise and evidence-based summary of why it is irresponsible and harmful to communicate reductionist models of mental illness to vulnerable people who are seeking support.
As a peer, who works facilitating recovery education classes and doing one-on-one peer support (actual peer support), I appreciate the potential for people to develop deep awareness and understanding of the factors that impact their wellness and to use their strengths and hopes to create change and find healing within their lives, to recover the parts of themselves that may have been wounded, or lost and to live in ways that empower the best of who they might be.
In my assessment, strengths and potential are often absent in the messaging concerning brain diseases and life-long struggle to maintain a socially acceptable degree of wellness and appropriate functionality within one’s dominant cultural and economic structures.
I feel like, in many ways, families are harmed when they are supported in believing that their child has a brain disease or disorder – unless, of course, their child actually does have a brain disease or disorder, which can be conclusively verified and identified with tests and high-fidelity measures, and for which etiologically-based treatments or curatives may be implemented.
Most mental illnesses, as they are currently defined, fail to meet these criteria for what may be rightly called a disease or disorder. While many people do have neurologically based differences in experience and processing, those differences are not necessarily diseases and, in many cases, the struggles that may be associated with such differences are directly related to harm incurred in the expectations that one should simply be able to learn how to do what other people do, and to be how other people are.
So, it is not ethically appropriate for me – as a recovery-oriented practitioner and one who is ethically bound to support people in exploring their full potential and to challenge ideas that limit, insult, or otherwise diminish the full complexity of life and being – to sit quietly at community events and to nod pleasantly, to politely not challenge ideas which could conceivably be harmful.
My intention was to write a brief note, but as I tried to concisely say what it was that I wanted to say, I ended up telling much of my story, which – as it turns out – has everything to do with the impact of mental illness on the family…
I do want to thank you for the invitation, and want to acknowledge that I received it. I have asked my mother to drop off these copies of the narrative work that I did in trying to figure out if I should go to the community education event.
This is my way of attending…
The Impact of Mental Illness on The Family: An Open Letter to My Local NAMI
My name is Faith Rhyne and I am a certified peer support specialist who has been employed at a Recovery Education Center for the past 3 and 1/2 years. Additionally, I have served as an organizing member of the Asheville Radical Mental Health Collective since 2011 and am currently the Local Groups Support Coordinator for The Icarus Project, a well-known national grassroots support network by and for people who have been personally impacted by matters relating to mental health in ways that the medical model of mental illness fails to fully explain, capture, or uphold. I identify, in part, as a psychiatric survivor, because events related to psychiatry almost killed me, but I survived. I am a mother, and an artist.
Many of you know me as a person who has made efforts in the local recovery advocacy community, such as the initiative to support a series of dialogues on mental health for the purpose of gathering both community feedback and support in the process of exploring a recovery oriented system of care. That initiative was not well-supported, in spite of the effort and extensive work that went into it.
I have probably had some amazing conversations with more than a few of you.
I am writing this letter to speak with you about why I am not able to attend your upcoming community education event regarding the Impact of Mental Illness on The Family.
When I received your recent E-vite, with the subject line all in capital letters: THE IMPACT OF MENTAL ILLNESS ON THE FAMILY, I was at my own family’s home, at my parent’s house. I had barely spoken to my father. I imagined that I could feel my mother’s anxiety and sadness, her unease. It may have, admittedly, been my own unease that I was feeling. Their two dogs bounded toward me like children, while my own children wandered around in the yard, awkwardly looking for something to do at a house with puppies and arrows and a pond and field, woods and games and books.
I felt grumpy as I walked through their house. I could feel it in my stomach, the grumpiness – the anxiety, the sadness, the unease, a dull sense of anger.
I wondered, as I walked across the yard, with my head down, if my father thought I looked strange, if he worried about the way I walked, with my head down. I don’t look them in the eye anymore, my parents. I knew that, as soon as I left their house, I would feel better, and knowing that made me sad. So, the impact of mental illness on the family was something that was on my mind.
In 2010, I experienced a profound psychological and spiritual crisis, which was exacerbated by severe psychosocial struggles in the form of familial stigma, conflict with the father of my children, the sudden and traumatic loss of a beloved animal friend, and made worse by a nurse practitioner’s tampering with the medication I was prescribed for the “depression and anxiety” that I had been experiencing within my stressful marriage and a life that included full-time work, an intense Guardian ad Litem caseload, and two wonderful-and-challenging children.
It wasn’t my first crisis, but it was the first one I’d had in a long time. I had gotten good at crisis and I put it off for months, doing what I could to not completely fall apart: turning to art, listening to music, trying to find some solace in prayer and thoughts of people I admire and feel connected to.
It wasn’t until I had evidence that I was completely alone – without friend or family – that I slipped into a somewhat modified version of reality, and began to make what surely seemed like desperate and impulsive decisions. Even then though I knew what I was doing.
“I just want to talk with someone. I just want a friend.”
Of course, in the midst of everything else I was saying, nobody heard that.
I was increasingly convinced that I had noticed something very important, something that nobody had noticed before, and that – furthermore – something had noticed that I noticed and…
I was documenting and communicating what had bloomed into the subversive art project of the century – nay, the millennium – in my mind.
As I sought to distract myself from the decidedly dismal reality I was currently inhabiting in my walking talking life (where people thought I looked “crazy” when I was happy and got mad at me for reasons I didn’t understand, and where I was receiving phone calls from the other mothers saying, “You need to know that I was asked to ‘keep an eye’ on you…”) I began to think more deeply about meaning and form.
I was drawing-a-picture-everyday-for-a-year then, as part of a peridivorce rite of
site self- reclamation and so I spent a lot of time considering how things are put together, and what happens when lines are erased.
It was very sudden, the day I realized that I could conceive of the entire history of the universe, all the way back to the very first accidental spark. At once, I pulled the thread that held the past 5,000 years together in story…in story…in story…
“This is all made up!?”
I was shocked and awed, seeing clearly. My hands shook. All I could do was think, and when I thought, I saw pictures and scenes, felt things. Strange bruises showed up. I thought about my life. Counted the times I’d almost died, all the people I’d lost, the places.
“I was a genius.”
When I was 12, my family was told that I had a mental illness. I was in the 1st wave of the adolescent psychiatry market, DSM-III. I was a “troubled child” at age 11. Probably earlier, but I don’t remember having that identity prior to age 11, when I began to feel angry all the time, and when I began to cry all the time. Before that, I was probably angry, and I certainly cried.
I was a “tempermental” child, who didn’t have too many friends. I grew up in the woods, on hundreds and hundreds of acres, land that my great-grandparents had moved to, because my great-grandfather (who would later die in a way no one would ever speak of) had a “nervous disorder.” I was nervous, too – at school, at people’s houses, everywhere but at home, where I felt relatively free, and relatively safe, save for the ghosts I imagined in the woods at night.
I thought, as a child, that I could feel them there, in the woods.
When I was about 9, the US Navy developed a large nuclear submarine facility in my hometown, which led – ultimately – the loss of the land I grew up on, the death of the woods in the jaws of yellow machines driven by drunken men. I cried about that.
At age 12, only slightly sullen and generally cooperative, I sat in a room with my mother, and listened as she was told, “Your daughter has a remarkable intelligence; Her depression is caused by a chemical imbalance.”
The following year, after a troubled teen shenanigan involving riding passenger in the minivan belonging to my 14 year old friend’s mother, I was sent to my first inpatient psychiatric treatment facility. It was a for-profit outfit, long since shut down by governing authorities. There, I learned to say, “My name is Faith and I have depression, suicidal tendencies, and family problems.” I was put on an early SSRI, Pamelor, and was also given my first gynecological examination, by a male psychiatrist who I ended up having to see regularly for years and who would speak endlessly about how “good” his own children were. When I was 16, I experienced lithium toxicity under his care.
By that time, I had been in a number of different schools, listened exclusively to punk rock, and had begun to give myself tattoos.
When I was very upset, I would slam my head into the wall, leaving knots, or bite my own knuckles until the skin broke. I was cruel to my mother, and slammed the car door so hard it dented and would not open. I punched holes in the door. I left home a few times, went back.
Eventually, I got far enough away that I stayed gone for a while, got myself accepted at distant school and moved into a small room with my record player.
I stopped taking my psych drugs, cried in my car, learned the bus routes, found a few friends, and realized that I loved college, that I was good at it.
“You have the potential to make a significant contribution to the world.” I looked at the words written on the final page of my paper. Nobody had told me that in a long time, possibly ever. I graduated with a 3.84, which would have been higher if they’d added in the A I got in the anthropology class I re-took to get a better grade after I blew off an exam for a day trip to the beach during my first semester.
I majored in Sociology, and minored in African-American history; I told people about how I was “trying to make sense of where I was from.”
I volunteered teaching women in recovery adult basic education skills at a downtown mall, I picked up bags of day old bread and moldering vegetables for Food Not Bombs, and hung out at the small office of the Burnside Cadillac, a homeless-person-run newspaper. I studied Arabic for four years and wrote letters to my maternal grandmother, the woman for whom I am named, the widow of a Lebanese man, my mother’s father.
When I called and told my favorite sociology professor that I was had the flu and would have to do a make-up exam, that I was dying, he said, “No, please don’t die. We need you.”
Nobody had ever needed me, not for anything important anyway, like Sociology.
People had “put up with me,” and people had “dealt with me,” and people had “taken care of me,” but nobody had ever needed me.
For a period of time, I worked at a group home for adolescent girls. That was the first job I had ever gotten because of my own troubled history. In the interview, I said that I wanted to work with troubled adolescent girls because I had been a troubled adolescent girl. I didn’t, as it turned out, know much about trouble – the girls I worked with had been brutalized within their lives, every single one of them. Me, I had been troubled…but, they had been brutalized.
I had always had a sense of justice, ever since I was a kid who didn’t understand why other children were cruel and why some kids were poor.
The more time I spent with people who were struggling the more I understood that I would never be able to pretend that such woes and abuses in the world did not exist.
I went back on medication, a low dose of Wellbutrin, that didn’t seem to do much at all, other than be a pill to swallow in the morning and make me gain weight. I joined a small, stained boxing gym on Grand Ave. and shadow fought my own reflection through an entire winter. When my family came to visit, I had a black eye. When sparring, I forgot to punch back, and would just stand there and get hit.
Deciding that I was a terrible boxer, I bought a pack of cigarettes and started smoking again, rolled up my wrist wraps.
After graduation, where my father actually shed a tear, I was going home, back to Georgia, to go to graduate school. I took my GRE, and was surprised when I got 2 points shy of the perfect score on the Logic and Analysis portion of the test. I hadn’t known that I could do that. I was so certain of my plan to get a Ph.D in Sociology from the University of Georgia and somehow change the world with brilliant research that I only applied to that one school, and was accepted with a full assistantship.
I moved back to my homestate and cried, because I missed the bridges and buses in Oregon. I stopped taking my medication, and began to fall apart in the drug withdrawal process, under the stress of a new, much bigger school, and having to start all over with friends and studies.
I hated it. I couldn’t concentrate. I felt anxious and lonely, started hanging out with whomever would let me hang around, people at the tattoo shop, talking about Alan Watts out on the sidewalk, arguing about whether pavement is real. I played a lot of pinball in bars, decided I didn’t want to go to school anymore.
Two months later, I was having my stomach pumped in an ambulance that had been called by my mother, 6 hours away, whom I had contacted when I realized that I was losing consciousness and that, wow, I might really die.
I had taken every pill in the house, including 30 painkillers, prescribed for a sharp persistent ache that seemed to have no explanation.
I could not see straight for 3 days, but my kidneys and liver seemed alright.
I sat in the backyard with my father, who had come up, listened as he told me that I just had to “pick something and do it,” talking about the future or whatever. A couple months later, I moved home and got a job at a dog kennel, where I read Don Delillo and found a horse skull back in the woods. In the middle of summer, I took a bus out to Portland, moved back, persuaded my family to help me “get” a crumbling old house with a fenced in yard.
I asked my mother to send me the horse skull.
In 6 months, I had moved my old tattoo artist, who was an-amazing-sensitive-artist-in-the-process-of -coming-off-of-heroin, out West to be my roommate and soon we were shooting up cocaine together. I think I was experimenting with what it might be like to completely wreck my life, fast and tragic like, during a NW winter, with Nick Cave – predictably enough – as the soundtrack. I only used cocaine for a few months, because I understood that it would kill me fast and I had spent the last year trying to survive.
My daughter started screaming when he picked her up and put her inside his house. I didn’t want her to have to go inside. I didn’t want her to cry. I walked onto his porch. He told me to get off of his property and when I stepped to the door he pushed me back – because he was scared and thought I was a threat, though I wasn’t. I fell, hitting my arm on the porch railing. I stood up and called the name of the neighbor lady. I was scared, but I stayed calm, because in some situations I become calm when I am scared.
I opened his door, and I stood in it, not entering his house, but standing in the doorway, holding onto the frame and listening as he called the police, and as he called my parents…
“You need to do something about your daughter, she’s psychotic.”
I remember it all quite clearly. The way that my knees felt against my head as I sat in the grass, watching out of the corner of my eye as the officers approached in the dark, the look of the neighbors standing around my children’s father, silhouettes. He’d called them all, told them I was crazy. I was really quite calm. I went home, sat in the house, waited for my parents to tell me what was happening. I knew that everyone was out of their minds, that the situation had a distinct chaos to it, the collision of pasts and realities, feelings and ideas. Panic, helplessness. Terrible forces.
My father had what I saw as a look of pure hatred, utter contempt, in his eye when he looked at me, standing in the driveway.
“Are the kids okay?” I asked.
“No. They’re scared.” He told me that their father was “scared, too.”
I understood then what had happened.
“If you ever hurt those children, Faith, I swear on my grave that I will fight you to your death. You have hurt too many people for too long.”
My father’s word broke something in me. He sounded coldly cruel. His eyes did not look like his eyes. They looked like somebody else’s eyes. I didn’t know that man. He was not the same man who had taught me about the woods, that had taught me about oceans, and about birds, rivers and tides, who had taken me for long walks and told me stories.
He was some other man. My heart was broken.
Sometime between that conversation and the following night, my parent’s contacted the NAMI branch in Transylvania County, where they had gotten involved in a family-to-family class. I was asleep when the knock on the door came. It was 9:00pm and I was exhausted, but had job applications on my desk, a plan to slowly begin to somehow move forward. Three armed officers were at my door. I actually laughed a little when I grasped the situation, a bitter, rueful laugh.
“Could you please sit down on the floor, come away from the counter.”
“Oh, yeah,” I said flatly, gesturing toward the knives. I rolled my eyes, asked if I could smoke a cigarette before I left. I didn’t think to take anything with me; I was probably in shock.
I went along willingly enough, agreeing to be handcuffed, because I knew I had no choice. At the hospital, I was told to take off my bra and put on a thin shirt, that was easy to see through. I tried to cover myself with the starched blanket, hating the smell of it, hating the lights in the place, the people walking around.
It was the same hospital that my children’s father worked in. I knew those people. They knew who I was.
I couldn’t relax. I was cold. I was sweating. I stunk with pure fear as the weight of my situation sunk in. I went to the edge of the curtain, stood there. Nobody seemed to notice me.
I said, “Excuse me…” and nobody looked up.
“May I please have my bra?” I asked, a little louder. A nurse looked exasperated. “I’ll deal with it…” she said.
“I want my bra.”
I was told that I could not have my bra and frustrated tears came to my eyes. I was told to sit down. I didn’t want to sit down.
When four men came to the small, curtained off room, I sat down, and then laid on my side as they told me, because – again – I understood that I had no choice.
I didn’t argue about the restraints, because I knew it’d make things worse. Besides, the Haldol made it seems like being able to move didn’t even matter anymore.
For the next two weeks, any time I tried to stand up for myself or express a need, I was threatened with injections. I couldn’t feel a thing, but exploded into a weeping rage whenever I tried to speak with my mother on the staticky phone in the hall. I walked up and down the corridor, passing the numbered rooms. Left messages with my lawyer’s receptionist, and tried to be calm sitting in the room with the woman from DSS, who I had called, after I was pushed in front of my children.
I was being investigated.
Two years earlier, I had won an award for being a Guardian ad Litem of the year, and I was being investigated, because there were concerns about my mental health.
I got out of the hospital with a heavy dose of risperidone and depakote, lorazepam for anxiety, and coming off of the venlafaxine I had been on.
I ate cheese and crackers at the court-mandated intensive outpatient commitment program and spent my evenings looking at the lights of the house my children were in and writing emails to myself about how tremendously horrid the scenario was. I began to struggle with feelings of wanting to die and would lay in bed for long hours, willing my heart to stop beating or to get a vicious cancer or to simply disappear.
I was humiliated and ruined, marred, everything that mattered to me was wrecked, as far as I was concerned. I began to figure out ways to negotiate the worst winter of my life. I sent out messages and allowed myself to believe that every encouraging song on the radio was meant for me to hear. I began to walk around the house saying, “Be strong, be strong, be strong.”
At times, a great, cold darkness would settle into my chest and I would find that I could not move. “This must be what the beginnings of catatonia feel like,” I dimly thought, as I stared at the wall, slumped and defeated. I’d roll myself onto the floor with great effort, pull myself up the stairs, hold the banjo heavy in my lap.
I was determined to “get my kids back” by the holidays, but until then my parents had to “chaperone” our brief visits, which would leave me howling with rage and grief during a long, snowy winter. I decided to sign up for online classes and revisited The Icarus Project. On the forums, I ranted and raged and kept myself busy, talking with strangers. I understood that I wasn’t crazy, that I was just different and that I was wounded, and that I had every right to be outraged.
I had to find a job, but no place I applied to – not the gas station or the supermarket or anywhere else – would even call me. I only went to the store late at night, because I couldn’t stand to see children at the grocery store.
I felt cursed.
I saw the ad for the peer job in the paper, and wondered, “Could I really get a job because of all this?”
I applied and cried on the way to the first interview. I still had an open DSS case: The case wouldn’t be closed until I had met the expectation of getting a job to demonstrate my improving emotional and functional stability. It was not an option for me to apply for disability. My kids could spend the night with me again, things were getting better, but I needed to get a job.
In the interview, I told my would-be supervisor that I was “so severely impacted by bipolar disorder that I would have to take medication for the rest of my life.”
That turned out not to be true at all.
Working was exhausting. I was constantly tired in a way that felt almost narcoleptic. Every move was a conscious decision, an act of sheer will.
I sat on the floor of my new office and read about wellness. Something clicked for me. I understood the content of the classes I had to facilitate at the REC, Wise Mind, WRAP, and Wellness Management Recovery, Love and Logic. Students liked me, and it seemed to matter that I listened to them, that I could share parts of my own story. I wrote a paper about childhood bipolar disorder that proved it to be little more than a murky diagnostic construct and read chapter upon chapter about abuse dynamics in family systems. I got A’s in my classes and then quit the program, because I could not stand the way that other students spoke about people with diagnoses.
I was a person with a diagnosis, bipolar 1, severe with psychotic features.
Every month, I went to see my psychiatrist, a young doctor, who had been accepting new patients when I needed to fulfill the IOP’s and the court’s requirement that I establish myself as a patient with a psychiatrist. I talked to the new psychiatrist about what had happened to me, about my life. When I told him what my father had said in the driveway, I caught the look of brief tears in his eyes, incredulous and out of professional character, he asked, “What? Did he want you to commit suicide?”
I felt he understood, though he was dismissive of the realness of clouds. I told him that the depakote was making my hair fall out, that I was tired and bloated, my clothes didn’t fit. He agreed to take me off it. I told him I wanted to go back on Effexor and cut back the risperidone.
Eventually, I was supported in coming off of all of my psychiatric prescriptions, in part by my prescriber, and also by the fact that I no longer had health insurance to pay for pills.
I have not been on psychiatric drugs for almost 3 years. I manage my own well-being with a personal regimen of art, activism, good food, laughter, and self-reflection, as well as rigorous practice in recovery education.
Swordfighting with my kids has been helpful.
In the Spring of 2011, I signed papers that state that I no longer hold legal custody of my children, but that they can be with me for part of the week, and that I can be involved in their education and medical care. I signed the papers because I needed the custody negotiations to end, because that process was hurtful to my children, as it seemed to spur on conflict no matter how cooperative I was.
I understood that unless I allowed their father to “win” that there would not be peace. Song lyrics helped me to make that decision, “Sometimes you have to give up what’s right to know what’s worth fighting for.”
I really only wanted peace.
It has been slow, but things are getting better.
I am able to frame and manage my form of madness as an art, and my skill and intelligence in systems thinking and problem solving is being recognized. I have a great deal to learn and develop in, since so much of my life has been disrupted and derailed by the effects of “mental illness.” I have surrounded myself with allies, for my own protection against the effects of mental health stigma, abuse, and discrimination. I regularly prove myself to be quite reasonable and sane, even brilliant, depending on how such things are defined.
My oldest child is about the same age I was when I started to struggle. Nobody who is eleven has an easy time of it, and most kids today have more to heal from than we can even conceive of, the things that children have to go through.
My own family is still healing, and it makes me sad that I have had to acknowledge to my children that their childhoods got completely screwed up because of mental illness – not because I have a mental illness, but because of the way their mother was treated because she was believed to have a mental illness. I am a good mother.
The only time I am not a good mother is when I am exhausted, threatened, harassed, and otherwise harmed…then, I become distractable, and grumpy…because such things are difficult, oppressive, and cruel. Even when I am not a good mother, I am still a good mother – because I tell my children an appropriate truth, about why it is important to be oneself, and what happens when people get confused about who you are and what you’re worth.
“If anyone ever tells you that your mom is crazy, just tell them it’s complicated, that your mother is a genius and that she loves you very much, people don’t have to understand.”
I miss my parents.
I see them every week, but I miss them. I don’t talk to them about my life. Not since I saw the lies that they submitted to the magistrate to have me involuntarily committed at the suggestion of a NAMI representative which offered them what amounted to wanton unsolicited medical advice regarding a problem that was primarily non-medical and, in the ways that it was medical, was iatrogenic in nature and certainly not requiring of “treatment” on a locked floor.
I was in crisis. That’s totally true. Was being hospitalized what I needed? Absolutely not.
If NAMI wants to support families in mental health crisis, please stop telling people that crises which appear to be mental health crises are caused by a brain disease that requires medical attention in the form of psychiatric intervention. I know that some people genuinely do have some very serious and concerning, persistently troubling experiences, and I know – also – that the vast many of them can and would recover or find some way to adapt a life for themselves that supports some modicum of empowered well-being, with occasional joy and a sense of being relatively comfortable within one’s life. It is never so simple as a chemical imbalance, a pill, a therapist. People need friends, they need to community, they need health and art and ideas and realness. They need to be appreciated and upheld in the best of who they might be.
I mourn, literally, the fact that my family had this amazingly sensitive and talented daughter, who had a certain way about her with animals and with old people, this daughter that they loved. I knew that they loved me. They taught me so much of what I know is important, and they went to great lengths to show me an entire world, to teach me about the woods and the river and the land, about how to row a boat and shoot an arrow and kill a snake. They raised me near a pear orchard, with my great-grandmother, who was best friend for many years. They had this daughter, some person who is now – somehow – me…and some idiot in an office told them that I was sick and so, over time, they could not see me clearly, then – finally – they could not see me at all.
People also told my family that I was smart, but that didn’t mean anything.
I was expected to just be able to do and be everything everyone was.
I didn’t understand that my mind really does work differently, not because I am mentally ill, but because I used to be a genius, and I am an artist.
I do not talk with my family about who I am anymore. I do not look them in the eye. I keep everything beautiful about me a secret. I only mutter things, because I do not feel at ease in speaking, lest what I say be judged, lest what I say be evaluated. I do not want their approval and I scorn their pride in what small accomplishments I might make, because pride extended can be pride retracted.
I do some amazing work, but I only talk to them about dogs, weather, and financial matters.
I wonder how the situation might be different if my family had received a different sort of support when they reached out for help. They were worried, and they had a right to be worried. I was not doing extremely well, but I was trying to take care of the situation, trying to make sense of it and figure out my life. People would not let me do that.
I really just wanted someone to talk with, who would listen and help me make sense of it all. I also wanted someone to believe in me and to stand up for me, to understand why I was struggling. I could have told them, I did tell them…but, all they talked about were “my chemicals.”
So, it is for all of these reasons, my whole story really, that it is hard for me to think about attending your community education event THE IMPACT OF MENTAL ILLNESS ON THE FAMILY. Though I do want to support the intent within the efforts NAMI is making, as a professional and as a survivor I do not agree with much of what NAMI says or suggests.
Thank you for your time in my sharing of story.
I often feel that the local advocacy community really does not *get* just how truly challenging – and how truly triumphant – it is for survivors to go to meetings with people who operate the programs that caused them harm. I attend because I want to change things and believe, at this point, in redemptive justice – that perhaps, if I can help someone else, then some peace will be brought to the wounds of my life, that if I can use my story in some way that means something, then maybe I’ll get back what I lost…
I hope the community education event goes well.
Amazingly, this is just one teeny-tiny part of my week, where I stayed up late and really put it on the table, wondering what would happen if people knew more about me, not that stories can’t be told a hundred different ways. I don’t know – already – if this would be the way I’d tell my story, if this is what I would say. I’d probably leave some things out, perhaps add others, remnants of conversations. One thing I am mightily grateful for is the fact that I have at least a partial record of details that might be otherwise momentarily irretrievable, if not lost. I think I have a good memory, but only when I remember things.
This afternoon it stormed after I talked to people in four different states, had my picture taken for a passport, filled out a timesheet, made a commitment. At a coffeehouse I watched a movie about an artist, and it was pleasant enough, interesting enough, real enough, though tragic, because everything is…depending on how one looks at it, but also triumphant, because anything that exists is triumphant, for better or worse.
I watched experimental films on the night of the day I handed my mother this presentation of my story. The next day my path crossed with a young local filmmaker, who created a character who intended to kill herself on 02/22, but who was saved by the kindness of a friend.
My new co-worker paints appealing mildly postmodern narrative portraits and studies in abstract relations. He is untrained, but shares a studio numbered 222.
Mercury is in retrograde, but I went to the Post Office today and everyone was in a strangely happy and super helpful mood. It was mindblowing, actually, how friendly the passport worker was, and how the postal worker in business casual with a tie took so much time talking to someone about how to use the USPS website.
It seems that things may be, finally, turning on their head once and for all…at least for the moment. I don’t get too over-confident about such things.
Note on clouds: I took about 80 pictures, with my phone, of some of the progression shown here. I don’t have another camera at the moment, and am beginning to appreciate the challenge of working within the limitations of one’s tools.