Wednesday, December 7, 2011

Like Mother, Like Daughter

by Marin Sardy

I am addicted to my sunglasses. I keep them with me constantly, popping them on the instant I step into the sun—or even on cloudy days, if the cover is thin. “I’m sensitive to light,” I tell people, and watch them roll their eyes.

I wear sunglasses inside sometimes at the grocery store in Manhattan. Without shades I can have a little trouble working my way through the store to buy food. The intense track lights in the produce section are so bright that I sometimes have to pause and close my eyes for a moment before moving on. Whenever I’m in there I feel like someone spotlighted on a stage. But apparently I’m the only one who has this problem. The first few times I went there, I would look around to see how other people were handling the bright light, but nobody else seemed to mind it. Eventually one day after buying salad with my boyfriend Will, I asked him if the lights bothered him. “No, not at all,” he said. I explained that I could barely tolerate them. “I’ve never noticed it,” he said.

What is going on with me? I never thought much about it until I began learning more about schizophrenia, and I discovered that heightened sensitivity to stimuli is a significant component of the illness. Now it brings up a very basic question that has always plagued me: Am I normal? I have certainly not felt normal since my mother became seriously ill with some form of schizophrenia when I was ten years old. As her daughter, I felt that her strangeness was mine too; that it seeped into me. And I could see that the problems I had at home turned me into a different kind of kid—solitary, untrusting. I know now that the isolationist tendencies of my youth were typical, often useful coping responses to untenable circumstances. But what about my dependence on sunglasses?

In this case too, I may be more “normal” than you’d expect. Schizophrenia originates in hundreds of genes, each of which has a small influence on the brain, and since half of my DNA comes from my mother, there’s a high probability that a number of her abnormal genes have shaped me. Shedding some light on this are studies showing that a range of brain differences typical in people with schizophrenia are also common in close relatives like me. If we look at sensory sensitivity, I find that my mother was renowned in our family for her extremely acute hearing and sense of smell long before her psychotic break. My father still tells stories of her almost superhuman detection of noises at the other end of the house. As for her vision, she has worn a visor for decades—a shield, I recently realized, from all the bright light.

According to a number of studies, even the way I think is shaped by some key traits that first-degree relatives tend to share with schizophrenic loved ones. It is likely, for example, that my mother and I both have an overactive “default system.” This is the network of neurons that turns on when you’re dreaming or daydreaming, allowing your mind to wander and imagine. Usually it shuts off when you need to focus on a task at hand. A slightly overactive default system is associated with high creativity, and as a writer, creativity is a trait on which I pride myself. The key difference between my mom and me is that I can turn off my default system when I need to. My mother can’t. She lives inside the waking dream of her psychosis.

My mother and I also share the trait of low “latent inhibition”—a weakness in the brain’s gating system that results in difficulty screening out irrelevant stimuli. This means I’m easily distracted. If I’m surfing the Internet and I land on a web page with an ad that shakes, flashes, changes colors, or scoots across the screen, I am rendered helpless. My brain is unable to ignore the movement, so I can’t concentrate on what I’m trying to read. When this happens I either flee the site or, if I’m dying to read what it says, I move the whole browser window so far to the edge of my screen that the ad disappears off the side of my monitor. Then I can focus.

I actually don’t think of this trait as a liability, however, at least to the minor degree I deal with it. Low latent inhibition also facilitates creative thought by alerting me to connections between disparate ideas and enabling me to think outside the box in this way. I honestly cringe at the thought of having a strong gating system. A mind on rails! How limiting! But when a person’s latent inhibition is too low, as in my mother, utterly unrelated ideas and events can seem strongly linked. The result is paranoia.

Even in unexpected places, I find traits I have in common with my mother. Many people with schizophrenia, including her, show a remarkably high tolerance for pain. The same is true of about 20 percent of close relatives. I recognize myself here. For all my sensitivity, I’ve always seemed to be oddly tougher than most when it comes to injuries and pain. As a former gymnast, I’ve run on sprained ankles a few times, and in general, the knee, back, wrist, ankle, and shin problems that came with all that pounding never bothered me much.

As a teenager I would have been horrified if someone had told me I was like my mother. As a rule, I turned away from everything fantastical or emotionally ambiguous. I wanted clear, rational answers for everything, and I tried to fashion myself into someone whose choices always made sense. I would have thought that to be like my mother meant there was something wrong with me, that I was crazy—and to be crazy was to be all wrong, completely wrong. The taint of madness was so thick I thought that even a drop of it would wreck a person.

But when I was still denying everything about me that resembled her, I denied myself the freedom to be fully human—to participate in an imperfect emotional life, and to appreciate myself as I am. When I stopped resisting our similarities, I began to understand that creativity and madness are not the same thing. To be “ill” involves being incapacitated and disconnected from life. Yet only by embracing my difference could I step fully into mine.

Tuesday, December 6, 2011

I Am Exposing Us, Now What?

by Melisande Randall

I recently submitted a manuscript to be published by a mental health organization, and I am going through all the emotions a writer goes through when a publishing company says, "YES" to your memoir and accepts your contract. I have poured out my soul, made myself naked, and expressed feelings that seem contradictory yet are so deep and painful that I am left numb. The emotions I feel are many. I feel afraid, naked, vulnerable, accomplished, excited, remorseful, ashamed, proud, and most of all, relieved. I have had a story to tell for so long and to finally have it out brings forth all these emotions...some go together and some seem not so quite right to go together. Why do I feel pride and shame at the same time? I guess it is because I have to accept that imperfection and dysfunction were unfortunate traits that molded my inner-child. But, I am proud that the girl within grew up, sought treatment, and was brave enough to share a story that is both an honor to write yet a burden to carry.

Over this past weekend, I had to create a synopsis, bio and acknowledgment for my book. I thought carefully about how I felt about each family member and limited myself to just the most positive things I could say. We all grew up with and under a wife and mother who had a mood disorder, most likely, schizoaffective disorder. She was never treated, never confronted, and only recently diagnosed after turning 76 four years ago. Having to make sense of a life that was confusing due to my mother's violent and aggressive tendencies, I have had to find a way to heal, make a way to accept my family, and learn to focus on positivity. In doing so, I wrote an acknowledgment to family members that have yet to grasp the impact of my mother's mental illness. They all know it was there, but they are in denial and apparently, some are hesitant about the memoir I have written which will soon be published.

Due to my fear and anxiety regarding family reaction, a good friend of mine suggested that I send my family members a copy of the acknowledgment which I thought was a great idea. So, I thought about my dad, my aunties, my niece, my nephews, my kids, my sisters, and finally, my mother. I believe it was my faith and education and desire to understand that helped me to think of how my family has been helpful to me in whatever ways throughout the years. When I finally mustered up the courage to address, stamp, and send the letters off, I thought optimistically that my family would respond with gratitude, awe, surprise, shock, or maybe even pride. Yet, I also knew that there might be expressions of fear, concern and dread too. But never in a million years did I think that anyone in my family would dare suggest that my positive gift, my acknowledgment, would be mistaken as a suicide letter...yes folks, a suicide letter.

I will not say which members of the family called me all day until I finally answered the phone, last Friday. Two in my nuclear pod thought that my letter sounded like I was checking out, despite the fact that I stated this was going at the front of a book I wrote, about to be published. After I got over the hurt, I wondered why it was that throughout my life when I actually was in pain, none of them noticed. Yet here I am today, announcing that I am about to reveal how I have healed, and this is what I got in return? Then, I had to ask myself, "Mel, are you really that surprised? You finally say nice things about your family and some cannot handle it. Could it be they don't know how because they are still blinded by denial?" So this is why I ask the two thematic questions on this blog: 1. What keeps a family blind, and 2. What do I do now that I am exposing our family's secret, that mom was mentally ill and that is why she was "off" some days in a way that scared, threatened, and harmed us all?

So what keeps a family blind?

Could it be faith? Our beliefs as Christians (in my family and many others) is that the power of life and death are in the tongue and nothing cannot be overcome without faith and trust in God. We must pray. We must believe. We must accept. There is no room for "but's". But, I used to ask myself as a child why it was that my mother hit me for no reason and why did she always say I had no rights? Why did she call me names and make me feel ashamed to be a woman? Why did she deny part of our ethnic heritage and ignore that her daughter was disabled? These questions challenged my faith. But at the same time, the faith we had kept my family from accepting that something was wrong. And in doing so, we lost faith because how can you have faith to undo something that you are not willing to admit is there? So no one knew how to pray for mom's healing. And no one would accept it if I said I needed psychological help. I want to tell my family that faith does not equal IGNORANCE and DENIAL.

Could it be shame? We all know that mental illness carries with it a stigma. I totally get that. It is evident in our silence. It is evident in our lackluster policies regarding mental health. it is evident in the expressions that cross people's faces when you tell them, your mother has schizophrenia, or bipolar disorder, or major depression, etc. But why is it that no one judges a family or a family member when someone has some physical ailment that is chronic, such as high blood pressure, cancer, or diabetes? We look at mental illness and fail to see that the brain is an organ that can be "sick" too. I have read that because mental illness affects behavior, we have a hard time looking at it for what it is...a malfunction of the brain. And so, we see how others act and when they cannot control themselves, we make judgments. I get that. But how do we change it?

Could it be denial? Pain hurts. We cannot heal the pain. So we ignore it and its root case. And in doing so, we say it isn't there. If I pretend this person has not caused me harm, or is not broken, then I can ignore my pain and act like everything is fine when it is not. My family fell under my mother's spell. I did too for a long while. But I could not deny any more what my mother was doing to me, and to us, and I chose to get help and speak up and speak out. Why was I able to see and others in the family unable to see?

Could it be their ignorance? I was the first in our family to go to college. My sister followed years behind me with one of those "on line" degree programs, but prior to that, I was earning degrees up the ying yang at University. Education was part of my escape and one of the positives in my life which i used to win over and please my mother. Interestingly enough, it was my education that led me to therapy as I learned from being around other intelligent and open peers, that ignorance IS NOT BLISS. How could my family stay ignorant for so long to the point that they would choose to see my acknowledgment as my cry for help when my cries for help were ignored years ago? And instead, I am crying out to share the news that for me, I have broken a cycle. I am yelling from the rooftops that I am a survivor and I am triumphant even if plagued by sadness over the past I can do nothing about.

So, I have told my family to write their own darn books and not to tell me that my work is "fiction" when they have yet to read it. Could it be fear? Fear is a reaction to what bad can happen to us from some potential harm. I think there is fear that the truth will have to be faced, whether they choose to read my book or not. The word will get out and they will have to face themselves and their pain and their lack of ability to do anything to understand our mother. I know some will find what I have done to be disrespectful, or dishonorable, but these two things I want back: my self respect and my honor. For they were snatched from me at a young age. And as a child, I did not know what I was being robbed of. But, now as an adult, I know what to do to get back what I lost.

I wonder if my family will ever join me?

Friday, November 4, 2011

Strange Things I Have Encountered

For my contribution to the column this month, I am including a lyric essay I wrote recently. I’m printing it here because it explores how having a parent with a psychotic illness infused a sense of strangeness and also a peculiar kind of beauty into my understanding of the whole world.
—Marin Sardy

Strange Things I Have Encountered

The pattern I saw as a small child when I closed my eyes: concentric ovals in purple, red, and electric blue, with the oval rings vibrating around a few dots in the center, which vibrated too.

The sound of my mother sitting on a sofa in our quiet house late in the evening, rhythmically grinding her teeth.

A halibut’s migrating eye after it has worked its way around to the other side of its head, where it is not quite aligned with the rest of the face.

The ash that fell from the sky and coated Anchorage in gray dust, a few days after Mount St. Augustine erupted. It was as quiet as winter, but it made you feel uncomfortable and bleak when you looked outside.

The map of the world that my brother hung upside down on his bedroom wall. “There’s no up or down in space,” he said.

The note I found on my mother’s desk, written by an administrator for the British Royal Family, thanking her for her letter but assuring her that she was not the Duchess of Kent.

Once I caught a high fever and spent a day talking to the walls, which bowed outward from the corners of the room.

A lichen-covered human skull lying in a weathered coffin on an expanse of tundra. It had been pushed up out of the frozen ground.

The balls of aluminum foil that my mother wadded onto the ends of our television antennae, to protect us from radiation. That she would decide that foil could solve the problem, but not, say, rubber or Styrofoam.

A spider called a scorpion eater.

A young woman in Morocco with a tattoo on her face in the design of her tribe. When I asked her, with gestures, how it had been done, she pulled a safety pin out of a drawer and held it up.

The fancy plate of Asian glass noodles that my brother ordered at a restaurant in Hawaii. When it came, my mother said it looked like worms and wouldn’t let him eat it. They argued about it for ten minutes before she made the waiter take the noodles back.

The crowd watching a parade that you are in. As you walk along, it feels like they’re the parade.

A homeless man in Santa Fe who had a rat he had trained to lie on top of a cat, which calmly curled up on top of a dog. They would remain that way for hours. The man said he was spreading the message of world peace.

For a while my mother wore bandannas over her face, bandit-style, every time she was in the kitchen. The practice evolved to include a second bandanna over her forehead, so only her eyes were visible through the gap in the fabric.

That some questions in this world come with answers, and some do not.

Discovering that when your heart breaks there is an actual physical pain in your chest that feels precisely like that. And all this time nobody told you that this is where the saying comes from.

The bullet I found one morning, the metal all crumpled and unrecognizable, after it burst through my roommate’s window and then the sheetrock wall of my closet while we slept, to land on the floor beside my head.

My dog, stuck in a tree.

The miniature rubber bands my mother stretched across her teeth for a few months, as homemade orthodontic appliances. She refused to go to a dentist. I winced somewhere inside every time she smiled.

The glowing end of a cigarette thrown from the window of a car in front of you at night, and the orange light bounces on the pavement a few times.

When a forest fire fills the air with smoke, and the sun glows large and red and quivers like the end of the world.

The swath of scar tissue the size of my hand on my boyfriend’s shoulder. I have never looked at it closely, because it is too painful to take in all the details of such an injury to someone I love.

The months when my mother didn’t seem to eat anything at all except cheddar cheese and green onions. She would stand in the kitchen over a cutting board and take a bite of one, then the other.

The sheer volume of unanswered questions we carry with us always.

When a man said to me, “I don’t know what you’re talking about,” and I saw that he was lying, and I realized that nobody ever says that unless they know exactly what you’re talking about.

In winter when the coldest air sinks to the bottom of the valley, so that on extremely cold days it is much warmer partway up the mountainsides than down where the houses are.

The time I got angry at my mother for buying ice cream while I was trying to diet, and I put the carton in the sink and turned on the hot water over it. And as my mother reached to turn off the faucet she said, “Don’t be strange.”

A ring of fungus that invaded my forearm for a while. When I imagined all the microscopic threads growing and eating into my skin, I felt violated and frantic.

That songbirds pull their feathers out, leaving bare spots around the neck and shoulders, when they are constantly afraid.

An elderly woman on a Manhattan sidewalk eating raw pork. She looked at me with unfamiliar eyes and a slab of meat hanging from her mouth, and I knew she was not sane, and I thought of my mother.

When a sharp object presses into you but doesn’t cut you, and your skin bulges around it and forms a crease at the point of contact.

Eclipses of my mind, which happen in times of extreme stress. I am walking and then I am falling. But I’m not falling. I have gone black for a fraction of a second, and in that time I lost my sense of my position in space. Then I become afraid that at any moment I will pass out and fall.

My mother asked me, “Do you ever hear people calling out to you, but you can’t tell who it is?” I was young—maybe twelve.
“What do you mean?” I asked her. “Like when somebody kicks a rock and it sounds like a voice?” I knew I was reaching. I did not say, “The voices you hear aren’t real.” I had a feeling that by the force of my will I could bend this moment into something else. “Like the wind blows,” I continued, “and it sounds like your name?”
“No,” she said softly. “No not like that.”

Standing very close to the edge of the high cliffs at Canyon de Chelly. You are perfectly safe, but death is one step away. It is strange that some people find this terrifying while others are not scared by it at all.

A runaway horse cantering through traffic on Cathedral Parkway, with three police cars and two mounted riders chasing after it. The riders were both women with long dreadlocks that left wave-shaped memory traces on the air when they passed. It was beautiful and incomprehensible and then it was gone.

Tuesday, October 4, 2011

What’s Wrong With This Picture?

—Marin Sardy

My mother has gone missing. She is quite a wanderer, and pretty good at taking care of herself, so it’s not usually a problem when she goes traveling, staying in roadside motels and taking the train from place to place. But the last anyone heard from her was about six weeks ago, and we’re all getting a little freaked out. Yesterday one of my aunts called to ask if I had heard any news, and to say she was getting worried. I told her I would see what I could do to track down more information. Among other things, I called one of my uncles and asked if he had received any calls or postcards from her, and found out he hadn’t. That meant probably nobody had. I hung up with a stone in my gut that soon began shaking outward, into my limbs, my back, and my head. Here we go again.

I am deeply concerned about my mother, and doing everything I can think of to find out if she’s okay, but I’m not writing about her today. This essay is about me. What about me? As Daughters and Sons, we tend to forget to ask ourselves this question. Maybe this is because few others ask us, either. Neither my aunt nor my uncle wondered, in either conversation, how I am holding up. How I am feeling. Whether I have the support I need to cope with the worry, the stress, the anxiety. Whether I have taken the time to take care of myself. This is the way it has always been in my family. My uncle’s wife is a family therapist, yet neither of them has never asked whether I have someone I can talk to about my feelings. It’s as if my aunts and uncles don’t even understands that this is difficult for me, and that it is not only stressful to think about my mother perhaps being in danger, but it is stressful to have the past reawakened inside me.

When I was a child, my mother used to take off on long trips, often without letting us know beforehand, to places only vaguely described, for reasons unknown. Once, when she was gone for six months, she would call occasionally and act very nonchalant about the fact that when she left us, she pulled the earth out from beneath our feet. I was about eleven that time. She had run away from my grandfather when he tried to have her admitted to a psychiatric clinic, and didn’t resurface for two weeks. I was in fifth grade and, having no idea where my mother had vanished to, I puked for days and thought it was a bad flu.

My father had no patience for what his parents’ generation would have called a “weak constitution,” and he harangued me back into acceptable health. Any failing on my part—faltering, forgetting, spacing out, losing possessions, leaving clothes strewn on the floor—was something he immediately pounced on and hammered back into order. It’s obvious to me now that many of these “failings” were just signs that I was a normal child, and many of them were signs that I was experiencing psychological trauma. Usually if I was forgetting appointments or misplacing toys, it corresponded with my mother acting out or going away. But the more one of my siblings or I struggled, the more our father was right on top of us, verbally pounding us, drawing the line below which we were not allowed to fall. In other words, there was no nurturing in my life at the times when I most needed it. The result was that I went numb, and I more or less stayed numb for years, long after my mother returned from her long trek and somewhat stabilized.

Now that my mother has taken off again and we don’t know where she’s gone, and we haven’t heard from her for longer than usual, I feel a flood of the old childhood terrors overtaking me: terror of being abandoned, of losing her even more completely than we already had, of my father’s impossible standards, and worse, of falling short of them. I know he drove us so hard because he was afraid for us, afraid that any sign of weakness meant that we too would become ill, like her. But in my mind, his rebukes just proved that I was the hopeless failure I believed myself to be.

Because why else would my mother have left us, if not because I wasn’t a good enough kid? And more importantly, who was there to tell me that wasn’t true—that I was doing a good job? Who was there to say it was okay to struggle, to fall short? Who was there to point out that everything I succeeded at, I did by overcoming a deficit of support and safety that would have been unimaginable to kids from a healthy home? Nobody.

Who helps me now, when I need to help my mother? My partner, Will, is an incredible support. I couldn’t do it without him. My father was already divorced from my mother when she fell apart, and has understandably backed away from her problems. The aunt I spoke to yesterday frets over my mother’s absence but asks me to do the work of trying to find her. I call my sister for assistance with that, and feel pangs of guilt for pulling her into the search effort. I calm this guilt by telling myself it is okay to share the burden. My uncle, when I call him, is distant and tells me he’s leaving town for several days so there’s not much he can do. This is reasonable, of course, but as he hangs up, I think to myself, “Couldn’t he have shown some concern about how I am handling the strain?” In times of trouble, the family focuses solely on the problem at hand. And by their understanding of the way families work, my mother is almost entirely her daughters’ responsibility.

This makes me so angry I want to throw myself against a wall. It’s bad enough that I have had to deal with my mother’s mental illness for twenty-five years. I have struggled for nearly two decades of adult life to carve out a space for myself amid my mother’s permeating illness. It has taken me all these years to learn that I am not invisible, although her schizophrenia renders me in many ways invisible to her. She is rarely able to step outside her delusional world to see that I am a separate individual, a person who is more than an extension of her, who has my own dreams and hopes and troubles and battles to fight. I have worked with therapists for a decade to become capable of being in a healthy partnership. I have worked to become a writer, and taken risks for that, and accepted financial insecurity in pursuit of it. Yet my mother barely grasps what I do, and certainly has no sense of why it matters to me.

This is part of her illness, and I don’t begrudge her for it (except in a few exasperated moments). But with the fact that the rest of my family, and our entire culture, seems unable to see me—the daughter who grew up without a mother, who now must mother the mother, who has no one to mother me—I haven’t yet managed to make peace. Add to that the potent force of “caregiver stress.” I woke up last night in a panic, my head swirling with images of my mom, questions about her, memories from long ago. My stomach remains in knots, and my throat is dry, and my skin is breaking out in hives, and when I sit down to write the book that I have determined to write, my head won’t focus on the page. I am trying to take care of my mother to the best of my ability, while also fighting against the impact of neglect, abandonment, witnessing psychosis, fear for her safety, and grief.

Am I just feeling sorry for myself? I don’t think so. I think I am acknowledging a truth that many of us understand from experience, but which has not been verified by science until recently. Neuroscientists who study stress have learned in recent years that interpersonal stress can do powerful damage to not only our mental health but our overall physical well-being. Trauma and chronic stress create cascades of neurochemical changes in the brain that dampen the body’s immune system and sensitize people to the effects of more stress. This in turn increases the likelihood of developing depression, anxiety-related disorders, and a host of other problems. The fight-or-flight responses we felt so often as children, such as when a parent disappeared or frightened or abused us, triggered developmental changes in our brains’ hormone regulation systems. For many of us, including me, this derailed our capacity to regulate stress and left us vulnerable in the long term. In childhood, these cascades can be stopped or even reversed by nurturing behavior from a caregiver. In adulthood, it’s not so simple.

People who have had traumatic childhood experiences—such as parental mental illness, parental addiction, physical or sexual abuse, loss of a parent, or emotional neglect—are much more likely to suffer from heart problems, substance abuse problems, emphysema, and chronic bronchitis. This is true even when you correct for unhealthy behavior. In other words, a smoker with a difficult past is more likely to develop major health problems from smoking than a smoker who has led a placid life. Doctors are beginning see the anxiety that people like us feel as not merely a side effect of a difficult life but a central issue undermining our health. It’s like getting punished for being unlucky.

So, interpersonal trauma and stress create lasting changes in both the brain and the body. What can we do to help ourselves? How can we strengthen our immune systems and calm our nerves? How can we rewire our stressed-out brains? Not much is currently known, although it certainly appears to be possible. (We are a thoroughly under-studied group.) Things that have been shown to help are cognitive-behavioral therapy, yoga, acupuncture, meditation, and deep breathing exercises. And one of the most powerful stress fighters involves the simple act of sharing our thoughts and feelings in an understanding community. Families need to learn to do this with one another. When family members fail to understand and support one another’s feelings about having a mentally ill loved one, they make a hard situation much worse for all involved.

If that kind of community doesn’t exist within our families, we do have an alternative: we can find or form a support group. On Monday night, I went to NAMI-NYC’s monthly Daughters & Sons support group meeting, where I sat around a table with six other women and talked about my fears about my mother’s absence, anger I have felt about her illness, and practical steps I can take to find out where she is. A few times, I also laughed about it—and some of the women who had lived through similar tough times laughed with me. It lightened the load. I spoke and was heard. I listened to stories that reflected many of my own struggles. I remembered that I am not alone. And when I stepped out again into the night, I knew I would be okay.

Sunday, September 18, 2011

Why I Write

I was not allowed to be expressive at home. My mother's mood disorder was coupled with an obsessive notion that anyone not agreeing with her was a show of utmost disrespect. I was not allowed to explain myself. I was not allowed to rationalize with my mom. I was not allowed to cry when she made me angry, otherwise, she would get just that much more angry.

So, I cried behind closed doors, very much like I do now. I learned to smile when there was NOTHING to be smiling about. The facade we created for neighbors, friends, and relatives was a pseudo one. They knew we had problems but no one was brave enough nor willing to speak out loud, what we knew about Mom and that was the undeniable fact that she had anger issues. Momma could curse, Momma could hit, Momma could tear you down with words. But daddy would not defend us much. Aunties turned their heads in denial. My older sisters left rather than hang around to share the onslought of rage that their much younger sister was used to and often had to deal with alone and in silence.

I suffered along with my father who drank and worked and found his escape outside the home. My only escape was school and friends. But my diaries were where I expressed most of my pain. With my blank books and black or blue ink pens, I chronicled my emotions on a near daily basis. I threw some of the journals away later in life because reading them would make me literally sick. It was sometimes hard to relive a date and revisit the inernalized pain and anxiety I was feeling as mom and dad fought and then I was punished for things I had nothing to do with. RE reading the unfairness of it all was like watching old films of how people in history have been mistreated and then you just get angry all over again and wanna just turn the program off.

I hated being hit. I hated being called out of my name. I hated that I was an overachiever whose rewards were met with great appreciation from a mother who would forget about them the second they were announced and then slip back into her nasty moods. There was no pleasing her but I lived my life to do just that....make an unhappy woman, happy. It was all in vain.

So, i write to get the poison in my system out. I want the world to know what the emotions look like from the eyes of a child growing up in a household where mental illness exists. People can be told that your family member is "sick" but until they have concrete examples of how a day becomes an eternity as a child sits unkowingly, waiting for a storm to pass that has no time limit, they really have no idea what it is like. Until people "get it", they won't be inclined to help change it and deal with it on the societal level. Unlke the adults who can get away from dysfunction, the child growing up in a crooked house has no escape.

Resilience, strength, hiding, and great character seem to be cosistent themes among us. I pray more people pay attention to the children of mental illness as this has got to be one of society's best kept secrets. WRITE your story, and FIND the stories of others....and share and compare. Kill the stigma.

Melisande Randall

Monday, September 5, 2011

Why Storytelling Matters

“We tell ourselves stories in order to live,” Joan Didion once wrote. “We live entirely … by the imposition of a narrative line upon disparate images.” I think of this often as I struggle to fit a narrative line onto the years since I first watched my mother’s sanity fray. After nearly three decades of managing untreated schizophrenia, her life remains a story of slippages into and out of reality, and it’s still difficult for me to describe myself in a way that includes these slippages and how they shaped us.

I was about nine years old when I first noticed my mother’s thoughts and actions going awry. A couple of years later, my father sat me down and explained that she had “schizophrenic tendencies.” But I was mostly left to decipher my mother’s behavior on my own. Soon those tendencies became overwhelming symptoms, and she was hospitalized twice before taking off on a paranoia-driven trek around the world. She eventually stabilized enough that my siblings and I could live with her half the time (my parents were divorced), but schizophrenia continued to distort and break apart her sense of space and time, robbing her of a continuous life narrative. This is what oral historians call a narrative crisis, and it seems to me that this kind of crisis is a fundamental experience for people who suffer from mental illness, and their children too.

After my mother returned—-still delusional but functioning better—-schizophrenia settled in as the ghost in our machine, an invisible force that shaped our lives without being fully recognized or understood. Even my father comprehended her illness only in abstract terms—he rarely witnessed how it affected her. He, like her parents, siblings, and friends, had difficulty grasping how deeply compromised she was. Only we, her children, really saw it. And we had few of the tools we needed to make sense of it.

As an integral participant in the drama of my mother’s shattered reality, I felt my own life story fragment just as hers did. To cope with the madness all around me, I stayed cloistered in my safe world of daydreams and books, and I tried not to notice what was going on in my family. As I shoved more inexplicable and painful events to the back of my mind, my crisis only intensified. I could not see how to fit the growing pile of disturbances into a bigger picture, so I stored such moments as I experienced them—out of context, in isolation. I still find it challenging to fit together the disjointed pieces of our life as a family. This is why storytelling matters.

A narrative is a kind of map. When we tell stories about our lives, we nail down what is what, and link cause with effect. Theorists who study narratives point out, however, that narrative continuity can easily be disrupted, broken, or fragmented. This happens when an event seems inexplicable, or utterly separate from everything else in life, or in conflict with a preexisting conception of the world. Yet people need narrative continuity, and when we tell our life stories we struggle to fill in the gaps and arrange the fragments in order. Memories acquire meaning through association: successive events enrich and shift the significance of previous events as we retell our stories over time. Storytelling becomes an act of integration and self-creation.

At some point in high school I realized I could describe my situation to my friends—sort of. I would carefully assure them that they shouldn’t be alarmed if my mother did something strange, explaining that she had trouble knowing what was real. But the language I used was borrowed from my father. I couldn’t allow myself to feel schizophrenia, to find my own words for it, or form my own sense of what had happened to us. So my pile of unprocessed memories lay waiting, until I escaped my mother’s house and finally my self-protective buffer began to break down. One winter, at the age of 25, I sat down to my word processor and started recording a flood of recollections. It’s clear now that I was trying to pull them together into some kind of shape, but they came out in abject disarray, and stayed that way. I did at least begin to deeply consider the emotional impact of those events—to try to make sense of the thing that had torn sense away from me.

It was a good first step. However, I needed more than simply to open myself up. I also needed stories from other people, and basic facts that could help me understand what I had lived through. I needed context. Now, after a decade of reading, listening, learning, and telling and retelling, I do have some sense of context. But I still have many questions. So as I write for this blog in the coming months, I hope my stories and thoughts will help all of us to better make sense of ourselves, our lives, and our special position in the world as Daughters and Sons.

——Marin Sardy

Friday, May 13, 2011


We are satellites. We – I mean daughters and sons who have or had a parent with a mental illness. As satellites, we are not easy to find. We don’t attach easily to movements or groups. We may have vocations in helping professions, or we may avoid them at all costs. Yet we are many and plentiful, because there are many people who have psychiatric experiences, and most have children. As satellites, though, the process of finding each other and organizing as a group requires grassroots organizing. This has been the central effort of the Daughters and Sons Initiative.

Those of us who grow up in the shadow of a person who experienced psychiatric illness tend to float. We may do this because our experience, having gone unrecognized and often combined with experience of exclusion from groups, left us without practice bonding with peers or resentful of the various systems (family, mental health) that ignored our situation. The interplay between how adults view children's experience and how children view it has become clearer to me as I have gown up. So, I feel forgiving of the many adults that were willfully uninvolved in my situation. Simply put – living day in and day out with a person who has psychiatric symptoms is not easy for anyone. However adults can chose to take a break more easily than children. Adults know to call for help, reach out for resources, or can even drive to just seek help. Children have to find their escape in other ways, usually internally. When I write this I am thinking of rather severe circumstances, such as needing to find peace and quite while someone is hearing voices, talking to people they see as hallucinations, day and night. In such cases an adult may walk in, see that something is wrong, and take action. Whereas a child will simple have to wait for an adult to notice the situation. This is because we have not systemically addressed the needs of children who have a parent with mental illness with viable tools that allow children to ask for help. Children often also live the experience of the person with the mental illness. We talk with our parents in detail and try to reason our way through their experiences in order to find them, the parent, in the midst of their symptoms.

From this childhood experience, as adults we are acutely sensitive. We react strongly to real or perceived exclusion or being unrecognized. This means we may back away quickly when we think we are being shunned. I have found this to be a delicate road as an organizer. I am continually mindful of how important it is for each Daughter or Son involved in this effort to be recognized for their contribution and work. This is also what has held many of us back from being involved with larger mental health advocacy movements. Our desire for justice in mental health is often trumped by feelings of being unseen in mental health movements for our unique experience. Efforts like the Crooked House website are important because they are directly attempting to create a “commons” area where adult Daughters and Sons can find each other. In this effort we are building a platform for people who have experienced living in the shadow of their parent’s illness to give voice to our diverse and often mixed experiences.

When I think about my own experience as a satellite, I feel fatigued. At least for myself, I have wanted to land somewhere. As with many people who have this shared experience, going home really wasn’t an option once I became a young adult. This doesn’t mean I didn’t love both of my parents who suffered from mental anguish. They simply didn’t have a place where I could stay. In my struggle to find my own path and stability in the world, I was plagued with fears. What would I do if I too fell apart like them? I knew they cared for me, but there was little they could give me in support aside from love. And I was very fortunate because I had their unconditional love.

The path I took - workaholic success - became my way of attempting to create stability that I could fall back upon. In that effort, I felt like a mountain goat climbing a steep cliff. I was not so worried about a misstep as much as I was worried about stopping at all. Often along the path I would think about wanting to stop, but I was afraid I could not stop until I had reached some type of summit. Moments of happiness were often clouded by a pervading sense of emptiness and loss. I was on a highway, and I kept thinking I could see the off ramp. Signs with pass by, 250 miles to go … till the next stop? Till the destination point? I couldn’t quite see if I had missed the turn off point, or if it were somewhere ahead. “Maybe I shouldn’t have gotten on the highway at all?” I would ask myself. (I do prefer country roads.) “But it’s too late now.” I would think, “Its either forward or crash.”

When my parents died, people told me I was an orphan, which was true. But it was not their deaths that created that circumstance. It was their suffering in life, to which I was acutely sensitive, that had been the underlying loss I pondered. With their deaths I no longer had to worry for their safety. That was the only element in my life that seemed significantly changed. I felt deep sorrow that their lives could not have somehow been mended. I was still thinking about them, their happiness, or lack of it, completely unaware of my own or what happiness for me would possibly look like. Now, after three years of silent finality, I am beginning to see the space that remains open for me to discover my true self. Workaholic behavior no longer feels safe. Stopping and becoming grounded feels better.

I see myself as feeling more and more limited, and with that I take some comfort. I still feel passionate to work for the Daughters and Sons Initiative, and I have a few other personal goals that are ambitious. But I am embracing the limitations that attachment and connectedness create. I am, at this time, one of the fortunate few who have found peers via the Daughters and Sons effort. I therefore have a sense of context and mirroring through those relationships. What I hope is that together - somehow continuing on with others – we will find the other satellites. To the extent that we can, by giving others space and a voice, I hope that they too may feel safe to land, in whatever way feels right for them.

Thursday, April 7, 2011

Truth Telling

Last night I had dinner with a wonderful woman who also had a parent with mental illness. She has become a therapist and expert in trauma recovery, focusing on mind-body healing. In our conversation we talked often about truth telling and being authentic. To whom do you tell the truth, especially when the truth is something they don't want to hear? What is the purpose of truth telling for someone who has been the survivor of abuse, whether through direct attack or through the willingness of family, friends or the larger health system to turn away and pretend ignorance?

This reminded me of a plenary speech I gave in Montana last year. Below is the section of that speech that captures my reflections on truth telling:

The invitation I received to speak with you today included a request that I share my story, my mother’s and my grandmothers. First, I want to note important issues related to disclosing another person’s story. There is an interesting tension regarding disclosure, respect and privacy in mental health. Talking about my experience as a daughter and as a woman who has recovered from serious trauma and disclosing the experiences of my mother and grandmother are different things. People in mental health consumer rights would know that sharing my mother’s story is something she needs to approve. My mother passed away, in fact, all of my parents have passed away. However, I had daily conversations with my mother until she died and I know that she would have approved of my sharing what I know of her story because she was passionate about human rights for people with mental illness and proud of the work I have been doing to speak out on behalf of parents with mental health experiences.

But that is not all that I would like to say about disclosure. Why is disclosure important and helpful? What does it mean to disclose appropriately? What are the professional norms that create a chilling effect and sometimes a judgment against people who disclose?

To me, dynamics regarding disclosure are related to issues of power. Before I share how this power dynamic impacts me, let me parallel this chain of thoughts with experience I have gained in my professional work. Professionally my experience is largely program development for people impacted by large-scale human and natural caused disasters. My work has led me to work on behalf of people who were victims of torture, refugees and communities impacted by the World Trade Center disaster. Working on behalf of whole communities that have experienced injustice, I have learned the importance of public truth telling as part of healing and regaining a balance of power. This is also true for people who experience private abuse such as domestic violence, molestation, and rape.

Speaking publicly regarding events that have been internalized as shameful has two positive and clear results.

One, for the person who has internalized a “secret”, speaking openly releases the false belief that what happened is somehow shameful.

Second, speaking openly changes power inequities between groups of people. When one group of people has an experience and another group denies the reality of that experience, a power difference is reinforced. This closes possibilities for genuine dialogue. In the worst-case scenario, a perpetrator denies the reality of his/her victim in public and insists on secrecy. On a broader level, entire groups of people can be culturally trained to deny the experience of other groups of people. As I say this I realize some people might think I am taking specifically about mental health systems, but I am not, per se. I am thinking of a wide range of situations, from experiences of systemic racism to incest. However, the relevance of truth telling within mental health systems is increasingly important to address historic injustices and move forward toward healing.

What I am simply saying is that speaking openly about things that have been hidden or invisible is empowering, liberating, and changes the internal beliefs within people who have felt that they should feel shame about their life experiences. Disclosure, then, is an important tool and can have a deliberate impact. This is why we have books with titles such as “speaking truth to power” and “truth and reconciliation” efforts in places like Liberia and South Africa.

In mental health we are now looking at truth telling in topic areas such as addressing seclusion and restraint, use of jail systems to house mentally ill people and other systemic abuses of people who struggle with mental health issues. There is much more truth telling and reconciliation to be done in our experience as people directly or indirectly impacted by mental health systems.

Regarding disclosure: We all come from cultures that define what we think is appropriate or not appropriate to share. This can vary from state to state, from class level, from ethnic background and from professional training. What we must strive for, however, is genuine dialogue. We must strive to acknowledge the experience of others.

In my case, I come from a group of people you have probably not heard about. My group is sometimes called “invisible children”. I will discuss the concept of invisible children in my workshop tomorrow. For now I can simply say that I am one of millions of people who have had an parent with mental illness.

Wednesday, April 6, 2011

Resources - Update

In response to my “what holds us back” blog entry, I received an email from a Daughters and Sons Initiative organizer who was active several years ago. She asked, “In a future blog, maybe you can address what progress has been made in the US and also what the UK and Australia are doing that we could do too. I know a bit about these topics, but would like to learn more.”

It’s been on my mind since to take a stab at it. I receive emails weekly from people in the US and Australia that are working on exciting projects. Frankly, when I looked on the web for resources on this topic in 2003 it was hard to find much. Now there has been an explosion of interest in this topic and it is exciting to see real momentum and attention being given to improve the lives of these children and parents.

Here goes an attempt to update ya’ll. Please add to it in the comments! Tell me what you are doing....

Crossing my email stream these days:

In the US, the UPenn Collaborative has changed its name to Temple University Collaborative. They are doing proactive research and policy analysis to build an evidence-basis for provision of supported parenting with U.S. adult mental health systems. They are joined in this effort with researchers UMass Medical Center, Michigan State University, University of Illinois Urbana-Champaign, and University of Oklahoma – to name a few. I don’t think I am up on everything, but I receive information from my web of contacts on a weekly basis and I try to link people to parallel efforts happening in various states.

In Utah, Pennsylvania, Florida and Connecticut there have been active efforts to create supportive workshops and educational environments for children currently under 18 years who have a parent with a diagnosed mental illness.

Educational and policy related activities are happening this April via Daughters and Sons organizer Cheri Bragg (Connecticut) and a collaboration between Edie Mannion and Loran Kundra (Mental Health Association of SE PA) in Philadelphia, PA.

I will be presenting a workshop on supported parenting at the NAMI National Convention in Chicago this year. The panelists are people who have been actively doing supported parenting pilot projects and parenting assessment research in Michigan, Wisconsin, and Illinois. This workshop will be our 9th continual presence bringing these topics to NAMI National Conventions. As a former foster care child in the Wisconsin child welfare systems, this workshop is particularly close to my heart for its location and because a pilot supported parenting program for young mothers who are aging out of foster care will be discussed. All too often, the topic of poverty and its intersection with mental health is overlooked in these national mental health advocacy forums.

Australia is truly leading the way with resources and is far ahead of the US on many topics related to supporting families where a parent has a mental illness. The trendsetters on these topics are COPMI and COMIC in Australia. The UK is also far ahead with the efforts of the Princess Royal Trust for Carers, among other initiatives. (See resource links at the bottom of this post)

At first it was the Internet and email, but now social media is opening up new avenues for discussion, exchange of resources, and support. Several Facebook communities and websites exist now for adults who have a parent with mental illness. These communities have been created by people in Quebec, Canada; Rome, Italy; California and New Mexico, USA. Through these Facebook communities people with lived experience and researchers who are willing to use social media are exchanging ideas. This means that new resources reach thousands of people. (However, it seems there resources are circling in largely first world counties or among people who speak English. Perhaps more is happening, but my language limitations keep me unaware?)

A website for the Daughters and Sons Initiative is under development. We are seeking a fiscal sponsor to sustain and grow our work.

I am currently exploring ideas to put forth presentation proposals at the next international conference on these topics. Among ideas being discussed: the role of social media and the internet to organize nationally and internationally for children who have a parent with mental illness and parents with mental illness; the challenge of organizing on this topic in the United States compared to Australia, the UK etc.; the interplay between the role of researchers and community organizers (such as myself) in order to move policy forward. I just started exploring ideas for a one or two workshop proposals for this 2012 conference. (Ideas? I would love to hear from my fellow organizers.) The conference details:

Child and Youth Mental Health Matters
First National Parental Mental Health Conference
First International Young Carers Congress
Third International World Congress on Children of Parents with Mental Illness
Vancouver, B.C., Canada
May 6-8, 2012


Here are some websites for people who want more information:

(Temple University Collaborative on Community Inclusion (United States):

COPMI (Australia):

COMIC (Australia):

Check out the nicely revamped website for UMass Medical Center’s Parenting Well project (United States):

A young carers website from the Princess Royal Trust for Carers (United Kingdom):

More information from the Royal College of Psychiatrists (United Kingdom):

Mental Health America (United States) on parenting with mental illness and custody issues:

Yikkies! This is a lot to share because there are great resources being developed. All we need to do is bring these topics to the people who are trained, but simply have remained unaware of how doing small things would have great impact on the lives of the people they work with in mental health and child welfare systems

For adults who have (or had) a parent with mental illness, resources are also developing, but at a slower pace. It is up to US to develop those resources for ourselves.

The Crooked House website, which hosts this blog, has been a wonderful addition to those efforts. I know the creators hope more Daughters and Sons will share our diversity of experiences. We need to break stigma so that millions of us who have lived in the shadows of prejudice will understand our experience through access to peers.

I know that I have missed A LOT of resources here. If you know of a resource I missed, please post that resource as part of your comments! Lets keep the exchange of information going.



Monday, March 21, 2011

Fear and Open Dialogue

Today I am going to openly share an email exchange. It is not easy for me to share this, but it seems important to spark discussion. The audience I hope to reach with this is other Daughters and Sons who will hopefully comment and share their perspective. Let me give some background before I do.

Two weeks ago I had the opportunity to have dinner with one of the creators of The Crooked House website, Rosemary Zibert, and one of the people interviewed on the site, Marin. We had dinner here in New York, near Columbia University. Rosemary was in town for the theatrical reading of one of her plays and Marin was completing her first semester in an MFA writing program. We could hardly cover the many layers of personal, professional and mental health advocacy topics we hoped to over that dinner.

At dinner Marin shared a printed copy of a documentary essay she wrote based on an interview she did with me last fall. It is important to me as I organize for Daughters and Sons that my own story not be the focus of this effort. But in this case, a dialogue about what Marin wrote sparked an interesting and hot-button topic. Marin, Rosemary and I have agreed to share our dialogue here, based on what Marin wrote, as a series of comments on this post. Our HOPE is that other Daughters and Sons will also comment and share their perspective.

What Marin wrote, in my opinion, gets a bit to the heart of what peer support is about. Finding peers is important, for everyone, no matter what your background.

Here is the final section of what Marin wrote:


At forty years old, Maggie Jarry is tall and pale and a little bit bohemian. Her dark hair curls loosely about her head in the same way her scarf falls over her neck. When she speaks about policy issues, her well-chosen words come out strong and clear. She has many times articulated the problem that her own life stories, and those of others like her, have revealed: “A framework for contextualizing those stories into a call to action that includes policy recommendations and systemic change has been lacking,” she wrote in the journal Psychiatric Services in 2009. Now she adds, “When I was growing up, the only information I could find was about the biological likelihood of offspring becoming ill. That was only reinforcing my fears. It wasn’t helping me to understand and normalize my experiences.”

But as I interview Maggie I notice that her voice, so resonant, doesn’t quite fit with her appearance; something in her look that is a bit frayed, perhaps. Then we move on to her personal story, and something changes. Her voice becomes thinner, crackles, softens. The shift is so subtle that you might miss it. But sitting across a small table from her, I catch it easily. She still finds herself a little bit unraveled by the act of describing the central, defining experiences of her life.

I have felt the same shift, that sense of the ground moving under my feet, every time I begin to tell someone that my mother has schizophrenia. I recognize the quiet panic behind her resolve; the incorrigible shakiness of one’s own body in containing the mass of emotion; the phenomenal, compensatory capacity for abstract thought; and the tiredness of one who knows how hard it was to get from there to here.

Until now I have never, outside my own family, discussed mental illness with another child of schizophrenia. And as we talk, it hits me that in some way I have never witnessed before, we are breathtakingly, mind-bogglingly alike. Taking in her words, her face, her demeanor—I feel not only her story but her whole identity reaching out to me like a benediction.

The next few comments will show the email exchange that came from Marin, Rosemary and my take on what this experience between Marin and myself was about. Part of what we will talk about is whether abuse or neglect are part of the story of most Daughters and Sons.

Tuesday, February 22, 2011

What holds us back?

I've been planning to write this blog for several weeks.  The theme I've been musing over is "the challenges of organizing" on behalf of both parents with psychiatric experiences and their daughters and sons.

The challenges are many.  Shall I start with the interpersonal or the systemic? 

Systemic issues are important, so I will start there.   What I share here is within a U.S. context, although some of these issues may be overlapping with other countries.  


Many of my friends who have no experience with mental health systems, who have not experienced having a parent or family member with serious mental illness, assume that resources exist to facilitate conversation and support children who have a parent (or family member) with a mental illness.  They are surprised when I explain the lack of resources in the United States.

And then there is the reverse.  People who are trained as mental health services providers or who are involved in larger mental health advocacy efforts are quite convinced that most people in mental health systems (people with what is commonly called "serious and persistent" mental illness) are not parents.  Yet, the opposite is true.  In fact, a majority of people with "serious and persistent mental illness" are parents.  In this case, the people who should be most aware are the least aware.

Why is this?

Over the past nine years of organizing I have been on a journey to understand barriers that have held mental health systems back from recognizing and supporting people using services so they may succeed in their parenting roles.    The complete absence of recognition that children come to visit their parents in mental hospitals, and need special supports in those environments, has been part of my personal passion for this advocacy effort.

Here are some of the issues I have discovered on my journey thus far:

  • Historical prejudice against parents.  
Until recent decades (and still in secret corners of some mental health professional conversations) parents of people who have a mental illness - such as schizophrenia - were blamed for their children's illness.    This was especially true for mothers.  The National Alliance on Mental Illness (NAMI) was born in the late 1970s to respond to and fight this prejudice against parents who have a child with a mental illness. Eventually, mental health professionals have recognized that blaming parents for their children's illness was a mistake.  However...

There remains a stigma when the words "parent" and "mental illness" are put together in the same sentence.  People in mental health advocacy movements, such as NAMI, are largely parents advocating for their children who have a mental illness.  They assume that when a person, such as myself, talks about having a parent with a mental illness we will be a) complaining;  b) blaming our parents for any problems we might have; c) speaking about abuse; d) not actively working in a caretaking role.  

On a few occasions I have actually met parents who have a child with a mental illness (young adult child) who believe their child cannot and should not be a parent.  I have heard these specific parents tell me that they have encouraged their children to have abortions.  Some conversations have tipped into areas of thought that would encourage sterilization of people with "serious and persistent" mental illness.  In these somewhat rare, but occasional conversations, the people I am talking with fail to recognize that such acts would mean that people like me are not born.    (And people like Marilyn Monroe, Carrie Fisher, Gloria Steinem and millions of others would not be born either.  Millions of people have a parent who has struggled with psychiatric problems.)

This is a serious topic that touches on layers of negative assumptions which are deeply imbedded in our society. It deserves a lengthier discussion that I will go into now.  Simply put, prejudice against people with mental illness as parents is so deeply imbedded that it permeates even our largest mental health advocacy movements.  

  • Emphasis on individual vs. family (especially for billing)
Part of what holds mental health and child welfare systems back from addressing the needs of BOTH parents with mental illness and their children is our system for health care, which focuses on one individual as the primary person receiving services.  Adult mental health providers actually believe they cannot work with the children of an adult who is their client.  Child welfare system workers do not know how to partner with adult mental health systems for the benefit of the children in their care.  And children's mental health systems, by and large, do not provide mental health support to children unless they have an identified mental health diagnosis.  But this is changing with increased understanding of children's development.  

  • Misunderstanding of child development
For decades, and historically, children were to "be seen and not heard."  There was widespread belief that children were not deeply impacted by their early childhood experiences - they just adapt and move on.  In fact, all evidence now tells us that the opposite is true.  85% of children's brains are formed between ages 0-3.  In general, children are deeply effected by their experiences, especially traumatic loss, bereavement and sudden separation from a central caregiver.  These experience can have life-long consequences.  

Little by little there are shifts that fill obvious holes in our mental health systems.  In the past two years research into the effect of maternal depression on infants has led to policy shifts that extend funding for services to both mothers with postpartum depression and their infants, even if the infants are not presenting symptoms.  Yet, there have been few other shifts to support children who have a parent with a mental illness.  

My personal dream is that someday it will be standard practice in hospital emergency rooms to ask (when a person is being admitted for psychiatric care) "does he/she have children?"  If the answer is yes, a further inquiry would be made regarding "where are the children?"  And then, depending on who is caretaking for them - grandparents, other parent/spouse, foster care, extended family - a brochure will be provided titled "How to talk to a child about their parent's mental illness."  

This is not rocket science.  In fact, materials such as these exist in Australia and the UK.  Yet, currently in the United States, advocacy efforts must be focused on convincing mental health professionals that people who have mental illnesses often have a huge societal role as parents.  

There is still wide spread disbelief among mental health professionals that their clients are parents.  So, what is that about?

  • Disbelief in the potential of people with psychiatric experiences.

Until recently, mental heath systems were structured around belief that people with mental illness could not, and should not, work or do other types of jobs in society.  They were considered permanently disabled and were often told to give up on their life dreams as part of their treatment within mental health systems.  Recovery was not considered possible.  While mental health systems are now actively combatting this negative history with large scale efforts to incorporate concepts and goals of mental health recovery, there remains a great deal of negative beliefs within professionally trained mental health service providers.  I have wondered over recent years, "How can I help mental health professionals see the people they are working with as parents IF they don't see them as people first?"

Hopefully, as the importance of parenting increases in our society, the importance of parenting to people with psychiatric experiences will be given greater attention within adult mental health systems.  I think mental health service providers are missing enormous motivation for wellness among their clients when they fail to see the importance of their client's parenting role, to them and to society as a whole.


Among the symptoms of the systemic false beliefs I have listed above, I am regularly asked by psychiatric professionals with decades of experience whether I think this is a "new phenomenon."  By that they mean, do I think "that people with mental illness are parents because of deinstitutionalization in the 1970s?"  Its funny, actually, absurd to me that this question is asked... but I hear it regularly.  I remind these physicians (most often this question is posed by psychiatrists) that among women, many experience mental health problems after giving birth.  I also share that I have met many people, usually decades older than myself, who have had parents that disappeared into state mental hospitals and eventually died there.  In other words, people with mental health experiences have been parents as long as the history of mental health.

Has deinstitutionalization influenced this at all?   Well, perhaps.  Perhaps now a generation of people, like myself, grew up with our parents rather than having them taken away permanently to hospitals.  In my case, I am part of the generation of children who had a parent with psychiatric illness when deinstitutionalization was first happening (in the late 1970s).  This may have influenced my generation and we are now gaining our voice within larger mental health advocacy movements.  

And this causes me to wonder:

Is the phrase “nothing about us, without us” relevant to daughters and sons who have a parent with mental illness, as it is to our parents in mental health consumer rights movements?  Perhaps I will write about that in another blog....

Sunday, January 30, 2011

Universal Child

I'm listening to a song called "universal child" from a recent Christmas album by Annie Lennox.  Somehow it seems the appropriate backdrop to this simple blog.

There is a lot going on.  Lots of people are working in different corners of the United States to supportively touch the lives of parents with mental health experiences and their children.  I know of groups working in Utah, Connecticut, Pennsylvania, Michigan, New Jersey and Florida to create supportive educational materials and small peer support groups for children who have a parent with a mental illness.  Many of these initiatives are directly supporting the parents (as parents) through mental health support programs.

I also know of efforts to create support for adults who have the life experience of having a parent experiencing a mental illness.  Its a lot harder to get those groups started, but it is happening.

On Monday night I spoke to a group of people (approximately 51 people) in New Jersey on the experience of parents with mental illness and their daughters and sons.  In the audience - a 10 year old and a 15 year old daughter, a group of young teenage boys and some young adult daughters.  They were brought by their parents, who were either the parent with mental health struggle or the spouse who was working to support both his wife and his children.  The look in the eyes of the young people was truly motivating for me.  Their eyes were not bored.  They seemed filled with a mixture of happiness and hesitancy.  Many expressed that this was their first opportunity to hear a presentation on a topic that they had been living their whole lives.  One young woman who looked about 20 years old said she had read the essay I wrote last year and felt so much had been her experience as well.  I guess the best metaphor for how these young people looked would be - their eyes looked like sponges, eager to take in more.  They want to: 1. be acknowledged for their experience; 2. have more direct information.

Why are people afraid of talking with children?  All we have to do is ask them about their experience.  Its really that simple.

Then, after the presentation, I come home and find myself daunted by my own path.  I am working to find a way to carry on with this project, knowing that all these efforts - my own and others who are working in various corners of the US - require tangible, structured support to build our capacity.  We have been in dialogue about creating an organization that would bring age appropriate supportive literature for children and adults.  That conversation is continuing and requires its own time and focus.

I know it will happen over time.  Whenever I speak openly about these topics I see the gratitude of parents and children for the various stigma busting messages I share.  I feel motivated because I know this effort has already changed dialogue and self-perception for many people.

And, of course, even if I consider stopping, I know that I can't.  I know that I am blessed with some things my mother wasn't able to have.  I am blessed with mental health, a college education, work experience and a network of professional and personal friends who contribute ideas, resources and can make this happen.

Like many people - immigrants and refugees, children who have parents with various disabilities, children who grow up poor -  I know that I have a responsibility to the community of people who reared me.  I know that I am a continuation of their efforts.  That my success is their success.  And although I cannot give back to my parents directly because they have died, I know that this effort makes meaning out of their experience and mine.

When I see young people hearing a message I so wish would have been available to me at their age, I think how blessed I am.  People sometimes think its a sacrifice for me to work on this effort in my spare time, but its really my way of paying back and paying forward the many blessings and types of support I have received through the years.

Universal Child - Annie Lennox

How many mountains must you face before you learn to climb.

I'm gonna give you what it takes, my universal child.

I'm gonna try to find a way to keep you safe from harm.

I'm gonna be a special place, a shelter from the storm.

And I can see you, your everywhere, your portrait fills the sky.

I'm gonna wrap my arms around you, my universal child.

And when I look into your eyes, so innocent and pure.

I see the shadow of the things that you've had to endure.

I see the tracks of every tear that ran ran down your face.

I see the hurt, I see the pain, I see the human race.
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I can feel you, your everywhere, shining like the sun.

And I wished to god that kids like you could be like everyone.

How many tumbles must it take before you learn to fly.

I'm going to help you spread your wings, my universal child.

I can feel you everywhere shining like the sun.

And I wished to god that kids like you could be like everyone.

And I wished to god that kids like you could be like everyone.