Disability and Representation

Changing the Cultural Conversation

More from PTSD-Land: Betrayal and the Loss of Faith

[Trigger warning: Shunning, social violence, F-bombs abounding]

I have been crying a great deal these days here in PTSD-land. My therapist warned me that once I started feeling all the pain in my body, the grief would not be far behind.

She was right. It’s here. And with it comes a tremendous amount of anger.

Fortunately, my mind and body seem to be focusing on one gut-twisting injustice at a time, which is a great relief from the freight train of memories that seemed to be running over me a couple of weeks ago. At the moment, everything that is emerging comes from what happened at the synagogue where my husband and I met.

Let’s go back to late 2001. Bob and I had fallen in love. I was still legally married but separated from my now-ex-husband. Bob’s late wife had passed eight months before. We had been friends during the period in which she was ill, and we continued to be friends after she died. Bob had been the spiritual leader at the synagogue for about three years, but he had been part of the community in a number of leadership positions for about 20 years. I had been part of the community for a year and a half. I had moved up there when I separated from my husband, thinking that I had people there who loved and supported me.

Hahahahahaha! What a fucking joke.

Fast forward to January of 2002. Bob tells the board of directors about our relationship.

Oh, hell. If I’d known what was about to happen, I’d have suggested that we move to another state. Or country. Or planet. I’m not sure how far would have been far enough from these people, but it would have to have been pretty fucking far.

The people on the board had known Bob for decades. These are people who had seen him raise his kids. These are people who had seen him go through the illness and death of his wife. These are people he had served during that time in a state of grief, fear, and exhaustion. These are the people who had known how difficult it had been when his wife died — how bereft he felt, how much despair he felt, how alone he felt, how starved he felt for companionship. He was a friend of all of these people, and they were allegedly his friends as well.

Would you like to hear how his “friends” reacted?

The first words out of anyone’s mouth at that board meeting were the following:

“Bob and Rachel need to break up, and Rachel needs to leave the community.”

Just take that in for a moment. If someone said something that atrocious about a friend, how would you respond? I’m assuming that there would be outrage, yes? If I’d been in any meeting where someone had made such a suggestion, you would not have been able to shut me up. And, yet this piece of shunning and social violence was met with silence from the rest of the board.


By the way, to the woman who made that suggestion? FUCK YOU.

And to all of our erstwhile friends who sat there in silence with their thumbs up their asses? FUCK YOU, TOO.

And then, of course, the ultimatum came: Either leave the woman you love or leave your job. Nice, eh? Ultimatums are always a healthy thing, aren’t they? ESPECIALLY AMONG FRIENDS.

(Oh, sorry, these weren’t really friends. That was just a long-standing illusion. Because friends don’t do that shit.)

By the way, to the people who made that ultimatum: FUCK YOU.

Of course, Bob resigned, because… well, love is somewhat more sustaining than a bunch of assholes trying to make you choose your job over it, amirite?

You would hope that would be the end of it, and that people would grow up and deal, but noooooooooooo.  Watch the situation careen downhill:

1. I told my best friend in the congregation about Bob and me, thinking that she would be joyful and supportive. Her response was, “I don’t know how I feel about this,” and then proceeded to go on and on about what a problem it was. And over the next weeks, she came up with a number of wonderful suggestions, including the idea that Bob and I should not be allowed to be alone together, ever, and that I should seek therapy to deal with my anger over my life being ruthlessly fucked with.

Even Bob got pissed off, and Bob never gets pissed off.

Oh, and by the way, to the “friend” who said those things to me: FUCK YOU.

2. Friends of Bob’s called him to tell him how quickly I could get divorced so that everything would be all right.

About that breach of privacy and decency, guys: FUCK YOU.

3. People from the congregation called me and whined about how I was “taking their rabbi away from them.” Like the board’s ultimatum was MY problem?

By the way, to all the people who said that shit to me: FUCK YOU.

4. There was not one, not two, but THREE meetings at the synagogue to which people were invited to come and vent about my relationship with Bob. I fucking kid you not. THREE. My life became a reason for people to vent in a public meeting. In a synagogue. But not just in any synagogue. In the synagogue in which Bob and I had become friends and then fallen in love. In the synagogue where soulmates had found each other. THAT synagogue.

To all the people who made our love something to pissed on, shamed, and spat on: FUCK YOU.

5. Just a mere few months later, someone from the congregation became hostile with me and literally stood in front of my husband and blocked my path to him, as though I were an intruder. At a funeral. Yes. AT A FUNERAL.

To that person: FUCK YOU, sweetheart.

6. Bob and I went to restaurants, to the market, on walks, everywhere, and people were outright hostile to me. I don’t mean subtle stuff. I mean outright, nasty shit. And then I wrote to those people and said, “Please stop being hostile to me if you want to be in Bob’s life,” and what did they do? They called up Bob and yelled at him about me.

To those people: FUCK YOU.

7. Two people came up to Bob after a funeral and raged at him about the fact that they couldn’t be shitty to me and be his friend at the same time.  Go figure.

To those people: FUCK YOU.

8. Several people from the congregation raged at Bob about how he had “betrayed” them. By falling in love with me.  If they weren’t raging at him, they were talking his ear off in the supermarket about THEIR problems while ignoring my existence altogether. Did I mention the fact that we go to the supermarket to get food, not to listen to people’s fucking problems and have the delicious experience of one of us being shunned?

To all of those people: FUCK YOU.

9. Over time, Bob’s friends went away. Unless, of course, they needed something: someone to prepare their kids for a Bar Mitzvah, someone to initiate at a funeral, someone to fund a project. Then all of a sudden, Bob was THE MAN. OMG, there was NO ONE ELSE IN THE WORLD TO HELP. But other than that, they went good-bye.  An entire community of people. People he had known for 20 years, and some for even longer.  Gone. Gone. Gone. Gone. They didn’t give a flying fuck about his pain, my pain, our pain. They didn’t give a flying fuck about his joy, my joy, our joy. They didn’t give a flying fuck about him, about me, or about us.

To all of you who did that to us — and especially for doing that to my beautiful, kind, gentle, generous husband: FUCK YOU. FUCK YOU. FUCK YOU. FUCK YOU.

Because this is the part that grieves and angers me right now more than any other: the abandonment by people who were supposed to be my husband’s friends.

Bob and I have debriefed this for so many years, and what we’ve come to understand is this: At the time, the issue seemed to be about the fact that I wasn’t officially divorced yet. OMG! Imagine that! Falling in love before the ink on the divorce papers was dry! As though any one of those people wouldn’t have done the EXACT SAME THING.

Of course they would have, because that excuse for being nasty was utter bullshit. If that had been the only issue, people wouldn’t have kept this shit up for 11 years, to the point that we had to move to another coast. So it wasn’t that. The problem was that people wanted to be at the center of Bob’s emotional life, and they could not handle the fact that I had become the center of his emotional life. THEY COULD NOT HANDLE IT. They were like fucking children having a full scale collective meltdown. In their eyes, Bob’s only purpose was to serve them, not to need or to want or to do anything on his own behalf.

The wound from all of this is deep and wide and long. Watching my husband lose all of those people — people he thought were his friends, people he thought he could depend on, people he thought would be there for him — has gutted my faith in friendship altogether. I have some very good friends. The problem is that I never, ever rest easy in it anymore. I do not allow myself to. I do not ever, ever, ever allow myself to trust them or to feel reassured by their presence. Ever. I do not open myself up and expect anything from anyone, ask anything from anyone, or confide in anyone about anything. I back up, and I back up, and I back up.

Because what’s the point? Someday, people betray you. I watched an entire community of people do it. AN ENTIRE COMMUNITY. Of people who had been my husband’s friends for decades. If it had been just one or two people, okay. People come and people go. But an entire community? We’re talking scores of people here.

I need to get back to the place where friends coming and going is okay again. But I’m not there. I’m in this awful place of having just given up on friendship because my faith in other people has been so badly damaged. And the thing is, like anyone else, I need friendship. What these people did was like poisoning my food and then expecting me to enjoy a nice meal again without flinching. Friendship is basic to life. It’s like breathing or eating or sleeping. And what they did destroyed my faith in it.

I need a lot of holding through this. I needed it nearly 12 years ago and I still do. I don’t know how to get it, but this pain I carry, this isolation, this alienation — it’s too much. It’s gone on for way too long. I want my life back. And I want it back now.

The people at the synagogue owe us both a huge apology and about a ton of amends. Those things will never come, obviously. They will forever tell themselves the story that somehow Bob and I committed an injustice against them by falling in love. They will forever tell themselves the story that if it hadn’t been for me, all would be well. They will forever tell themselves the story that their community is just a wonderful, welcoming, open, progressive place and that we’re the ones with the problem.

With friends like that, all would never be well — not unless Bob were going to perpetually be in a situation in which he gave everything and expected nothing. And that’s never going to happen, not as long as I’m on the planet.

We expected better. We deserved better. And to all of your who did this to our lives: FUCK YOU. You ought to be ashamed.

© 2013 by Rachel Cohen-Rottenberg

On Brokenness

I’ve been giving some thought to the work “broken” as applied to the human body. For years, I’ve reacted against the word. I’ve seen it as an implied comparison with “normal,” as a judgment, and as a form of devaluation. And it often is. But I’m not sure it has to be, and I’m having a change of heart about it.

Part of what’s driving this change is that I’m coming to terms with my own sense of brokenness. Trauma and loss have broken my old sense of myself and the ease of my trust in other people. A different sense of myself is emerging, and a different kind of faith, but the old sense of self and the old faith have been badly broken, and that is part of surviving trauma. It breaks your heart. It breaks your trust. You don’t put the pieces back together in the same way.

For a number of years, I insisted that everything was perfectly intact, that no damage had been done, that any damage I thought had been done was an illusion. There was shame there for the breakages that had actually occurred. There was shame in believing that something had broken.

My soul is not broken. My soul cannot be broken. But my soul lives in space and time, in a body, and the body hurts when the soul does, and the mind has to deal with loss.

And then there is my physical body — specifically, my back. The working theory is that I pulled a ligament between my spine and my hip at some point in my life.  For a long while, my body compensated as best it could, and I did not even know that anything was awry. I had a little tightness and soreness, but nothing alarming at all. And then, one day, my body’s ability to compensate broke down, my hip got too loose, and I ended up lying on the floor, barely able to move with the pain of muscle spasms all across my lower back. I could barely crawl to the bathroom for pain relievers or lift myself to the freezer for an ice pack – and once I got them, they barely worked. My body’s ability to compensate for an injury – an injury that I might have gotten sliding into first base when I was ten – had ended.

There is something broken there – a ligament that isn’t holding my hip in place. I’m doing all kinds of core strengthening exercises to compensate and hold my hip straight, and they’ve helped tremendously, but the ligament will never go back to what it was, and very occasionally, the pain flares up again. There was also some nerve impingement in the beginning, and a few times, the signals didn’t get to my knees and it momentarily felt as though I didn’t have any. I didn’t fall, but it was an odd and worrisome feeling. It’s one of the reasons that I got a cane — the other one being that the cane gives me a point of reference for walking with my legs parallel to each other and keeps my right hip from over-rotating. When my hip over-rotates, I’m risking a flare-up.

I’m not sure that it’s bad to think about my body as broken when parts of have stopped functioning optimally, although I can feel my mind resisting the whole idea. And I’m not sure it’s bad to think about my trust and my sense of my old self having been broken when it’s abundantly true, although I can feel the fear that arises when I do.

Perhaps the problem is that the word “broken” has such negative connotations. We think of “broken” as synonymous with “Devalue it and throw it on the scrap heap.” That’s what we do in this culture with broken things. We render them worthless and we put them out with the trash. It’s also what we do with people whose bodies don’t fit a narrow standard.

But I’m starting to redefine “broken” as  “Work around it.” Or “Reclaim it.” Or “Get a mobility aid.” Or  just “It is what it is.”

I don’t really want to reclaim every single bodily and mental experience. Some physical and emotional experiences are awful. But I need to be able to say simultaneously, “This experience gives me pain” and “I love this body I live in because it gives me life.” I don’t want to devalue myself or my body because other people have broken my trust, or because the PTSD makes my body hurt, or because my body is fragile and does what bodies inevitably do.

I’m not a thing to be ranked according to whether I meet some standard of “wholeness.” I’m a person who experiences brokenness, just like everyone else.

© 2013 by Rachel Cohen-Rottenberg


Shunning, Shaming, Renaming

For the past 11 years, I have been shunned.

Not socially rejected. Shunned. By what used to be my synagogue community. For falling in love with my partner. For my partner falling in love with me.

He was serving as the rabbi when we met. After we made our relationship known, people who had formerly welcomed me would not speak to me. I lost my closest friends in the community. Others reacted with hostility to me in public. They put their bodies between my partner and me, blocking our path to each other. They held meetings to vent about our relationship. They responded to my friendliness with walls of coldness and detachment.

My partner lost his job. We lost the spiritual home that we loved. We lost our sense of safety. We had to move away — not once, but twice, because the first move wasn’t far enough.

After 10 years of marriage, we’ve moved 3000 miles away to start again. I am 54 and he is 68.

Starting over one more time wasn’t in the plan. And yet here we are. Together.


Shunning is a form of psychological violence. It brings out all the hidden shame you didn’t think you carried anymore.

Sexual shame. Body shame. There-is-something-wrong-with-me shame. I-don’t-really-deserve-anything shame. The shame you thought you’d dispelled when you faced your childhood. The shame you thought you’d healed when you found religion. The shame that lurks in a culture in which we are never all right just as we are – not really. The shame that is always beneath the surface when the body is always suspect.

It’s a shame that thrives on silence – that proliferates in silence, until you feel shame for even daring to push up against being shamed. Until you feel ashamed of your anger at your silencing. Until you feel ashamed of your resistance against what has been taken. Until you feel ashamed to speak the truth of your own experience. Until opening one door in your soul to let in the light causes three more doors to close because you don’t deserve to live in the light.

Until you feel as though you can’t even breathe.


Shunning creates an absence that is difficult to describe because its hallmark is silence – a frightening, wearying silence. Because others refuse to speak, to acknowledge your presence, to treat you as though you matter, there is no way to respond. A response assumes a listener. How do you respond when no one is listening? Words do not matter. All that matters is the shaming – the unnamed, unnameable shaming.

Nearly seven years into the shunning, I was diagnosed with the disabilities I’d had all my life: Asperger’s syndrome, sensory processing disorder, auditory processing disorder, vestibular issues, dyspraxia. That’s when the language of shame began to break its awful silence and bind my soul with words. Now the shame had names: Deficit. Disorder. Brokenness.

My body was wrong. My body was broken. I would never be right. No matter how many ways I starved my body, how kosher I kept my kitchen, how clean I kept my house, how intensely my empathy flowed, how kind I was to strangers, and how much I loved my family – it didn’t matter. I’d never, ever be right.

The feelings of wrongness that the shunning engendered and the feelings of wrongness that the language of deficit engendered became intertwined. In the light of my disabilities, I began to look at the shunning, and I began to wonder: Had I become a target because my differences, though unnamed, were so obvious? Did people believe that I was somehow less-than? And in my worst moments, I secretly wondered Were they right?

Not only had I been shunned by my community, but I was also entering a whole new identity as an openly disabled person, with all of the social isolation and rejection that came along with it. With my disabilities becoming more apparent in mid-life, I began to realize what most disabled people already know: that the world marginalizes us because of the ways in which our bodies work. I had been able to pass as nondisabled for much of my life, but by the time I was 50, full-time passing was no longer an option. I no longer had the energy. I had to work with my body rather than against it. I had to assert my needs. I couldn’t pretend to be normal anymore. And that put me outside the world as I had known it.

In the face of this dual marginalization, I lived my life in a battle between anger and despair. When the anger rose, I was determined to turn the language of deficit and disorder and brokenness into the language of blessing. If the “experts” said that people like me were hyperfocused on our obsessions, I said that I was passionate about the things I loved. If they said that we had splinter skills, I said that I had talents. If they said that we had deficits, I spoke of brilliant adaptations.

I reclaimed, and renamed, and rejustified my existence.

And suddenly, I realized that it was all wrong. Because ultimately, this reclamation project wrote me out of its script altogether. I was no longer talking about myself. I was talking about the gifts of Asperger’s.

My analytical mind, my focus, my visual acuity, my way with words, my musical talent, my passion for justice, my honesty, my sensitivity, my gentleness: these had always been my gifts. Not the gifts of Asperger’s. My gifts. But they were no longer mine. All those precious moments of pride and work and love and family that had made up the fabric of my life had been stolen from me and made the fabric of a construct I had never named.

The gifts of Asperger’s. The gifts of an abstraction, of a word that a stranger had created.

And as my sense of myself diminished, the shame became such a constant presence that I couldn’t remember what it meant to live without it. I couldn’t taste my food without the shame sticking in my throat. I couldn’t go to sleep at night without it laying down beside me. I couldn’t speak without using words embedded in it. I spoke in the oppressor’s tongue. I thought in the oppressor’s words. I was always ready to flinch, to apologize, to justify.


I sometimes think about the process of healing in terms of uprooting the shame, but I’m not sure whether uprooting is the right word. I’ve been uprooted enough, and I know that tearing out something by the roots tears up the rich fertile earth around it, too. I’m not sure what the right words are. I just know that the unshaming process cannot be done piecemeal. For me, there is no working through the shame, or coming to terms with the shame, or getting past the shame, to use the language to which I was once so attached.

There is only a radical claim to my own body, to my own mind, to my own soul. There is only a radical claim to love my own being – a being to which no one else has the right to lay claim but me.

Perhaps others have the privilege of being able to rely on the names that others give. Perhaps others can readily find mirrors in which they see images that they recognize. But so many of us cannot. So many of us cannot rely upon a world of deficit and shame and apology to give us our names. The words of that world are not our words. They do not speak us.

So I find others who are learning how to speak their own names. I join with others who are unapologetic about how their bodies look, how their minds work, how they experience the world. I journey with others who are rejecting the language of shame and who are learning to open all the doors of the soul to let in the light.

I hope to meet you one day on this road.

I wrote this post in April of 2013 and it appeared on The Body is Not an Apology’s tumblr blog on May 1, 2013. It is reprinted here with permission.

© 2013 by Rachel Cohen-Rottenberg


Peeling Back the Layers of Shame: Talking About My Mother

[Trigger warnings for sexual abuse, physical abuse, emotional abuse, shunning, shame.]

Shame is not something that most of us want to hear about. Many of us will listen to stories of any other kind of horror: sexual abuse, physical assault, hate crime, genocide. We consider it an act of courage when people talk about these things, and we give honor to the survivors by bearing witness.

But do we speak and bear witness to the debilitating and destructive nature of shame? Rarely. We fear rejection, judgment, social condemnation, isolation, shunning, so we don’t speak. And when we don’t speak, we can’t get a witness.

Truth be told, we often don’t want to hear about anyone else’s shame because it brings up all of our own. So if you’re still reading, thank you, with all of my heart. I know it isn’t easy to have come even this far.

I’m going to start by going straight into the heart of my deepest shame:


Lest you think my mother was a monster, she was not. I will not shame her in that way. Just to show you how very human she was, here is a picture of us, when I was about two years old. See how utterly ordinary we look? We were. We were just like anyone else. Human. Flawed. Fearful. Full of dreams. Trailed by demons. Capable of fucking things up royally.

circa 1960 mom and rachel But here is what I fear in this conversation: When I say that I don’t love my mother, I am afraid that you will think that I am a wholly unnatural and unloving being. That I am a freak. That I am missing some part of my soul.

Out of my fear and my shame, I will rush to tell you that I am, indeed, quite whole – capable of deep love.

Out of my fear and my shame, I will tell you that I still love my father (despite his many abuses) and that I miss him terribly.

Out of my fear and my shame, I will assure you that I love my husband as though he is the other half of my soul.

Out of my fear and my shame, I will protest that I love my kid with everything I am, and would willingly die to protect that kid against any evil that life can bring.

Out of my fear and my shame, I will let you know that I feed people on the street, and that I lie awake at night crying about the pain of the world, and that I am kind to small children.

And all of it is true. Absolutely, utterly true. But telling you that doesn’t push out the shame. It makes the shame worse, because now I’m justifying myself.

I suppose I must have loved my mother once, before everything happened. In fact, I remember very clearly, at some point in my twenties, feeling a momentary rush of love for her, and it nearly knocked me backwards. For a split second, my heart opened toward her, and then it shut right damned down. Loving her was dangerous. Loving her was foolishness. Loving her was an act of self-destruction. Being vulnerable in any way to my mother was dangerous to my ability to feel worthy of life. My openness to her sent me into spirals of self-hatred that terrified me.

I could do a recitation of all the horrors. The beatings by my father that happened only at the provocation of my mother. The hours that she would torture me by telling me what he’d do to me when he got home. The manufactured wrongs. The drama. The ways I tried to bribe her from my piggy bank to please, please, please, mommy, don’t tell. The sexual abuse she countenanced and then denied. The times I shouted for her and she never came. The years that I learned not to shout for her because it was futile. The ongoing mantra in our household that she was always, always, always right, and that everyone else was always, always, always wrong.

I could talk about my 20s and early 30s — about my rage, my despair, my spirals into suicidal thinking after every phone call. I could talk about the night my mother harassed me by telephone for three solid hours – the night my husband took me driving in Tilden Park while I screamed and raged and kicked the dashboard and then went into full-scale denial that anything bad had ever happened and that everything, everything, everything, EVERYTHING was all my fault. The night that my husband looked at me and said, “Sorry, but you’re screaming and raging and kicking the dashboard, and that’s not normal for you, so I’d say something pretty fucking bad happened.” The night that I still love him for, over 10 years after our divorce.

But that recitation is only more self-justification. Look how bad it was! How could I love this woman? It’s not my fault! It doesn’t really get to the heart of the matter.

In this recitation, I’ve left out one thing, and it has little to do with what my mother did and everything to do with what she felt: The woman hated me. I don’t use that word lightly. It wasn’t just dislike, or normal mother-daughter conflict, or not seeing eye to eye. She hated me. She hated who I was. She gave me praise when I erased myself. Otherwise, she treated me with rage, with contempt, with condemnation, with criticism, and with disappointment.

I don’t know why she hated me. I imagine that there was something in her that she needed me to complete and I just didn’t have what it took. (Should I be ashamed of that? No. But I am.)

The hatred in her went very deep. After I told her that I was going to break contact with her for awhile while I did some healing, and that she was not to harass me again without fear of legal repercussions, she took the whole family with her. No one in my family would speak to me again. Not my brother, not my uncles, not my cousins. No one.

She took away my family. An extreme act of hatred. An extreme act of shaming. When I tried to tell my uncle what happened, he shared with me the family message: You had no right to do that to your mother.

Daughters don’t get to tell their mothers to stop. They don’t get to take space to heal. They don’t get to tell them that they will find someone to protect them. They don’t get to be anything other than loving and self-sacrificing.

The loss of my family is so hard to talk about. It feels so shameful. I lost my family. They didn’t want me. Something must be wrong with me.

I began to hate my birthdays. I began to hate myself for being born of my mother. I began to hate myself for trying to survive. And beneath the hatred, there was shame, shame, shame without end.

After 13 years of estrangement had passed, my mother died in June of 2004. I found out in late May of 2005. One day, at my husband’s urging, I went to the computer, scanned the Social Security Death Index, and found that she had died eleven months earlier. That was it.

Did I cry? No. All I felt was relief. For the first time in my life, I felt safe. She couldn’t hurt me anymore. She wasn’t going to pop up when I least expected and tell me that I was unworthy of her love, unworthy of anyone’s love, unworthy of life itself. It was over.

How could I feel that kind of relief? Daughters aren’t supposed to feel relief when their mothers die. They are supposed to wail and keen and miss their mothers and talk with their friends about how hard it is and how nothing will ever be the same.

But I couldn’t do that and I felt ashamed of that. What was wrong with me?

I carry a giant absence inside myself where my mother and her love ought to be. And inside that absence, the shame spills endlessly. How could there be that absence? Why didn’t my mother love me? Why did she take my family away from me? What was wrong with me?

I’m not sure what to do with this shame and this absence. I’m not sure at all. In my rational mind, I know that all of this shame is a crock of shit. I know that my mother’s lack of love was not my fault. I know that she unleashed her demons on me and didn’t care. I know that other people get to fuck up royally every goddamned day of the year, and they’re not punished with condemnation and abuse and the withdrawal of love. I know that I should be allowed to be one of those people, too.

But the shame remains.

Maybe I’m not the only one. Maybe someone is there who, in the silence of their heart says, Yes. This is what I feel too. Maybe this shame will peel off me one day, and I will just be a human being who doesn’t need to protest what a good person I am. Maybe one day, after I’ve written enough and cried enough and spent enough sleepless nights wondering what the hell happened, I will just be a human being who says, I know who I am, and I know that I’m flawed, and I still deserve to be loved and held, no matter what.

This burden of shame is too heavy. I don’t want to carry it anymore.

© 2013 by Rachel Cohen-Rottenberg


The Stories We Tell: Coming to Terms with PTSD

One of the ways in which I navigate the cacaphony of competing discourses about disability, mental health, and just about everything else is to remind myself that we humans are always storytelling and that these discourses are just a series of stories. Along with eating, sleeping, and breathing, storytelling is what we do. Certainly, some things — like the sheer physicality of our bodies — aren’t just stories, and yet, we interpret even these things with stories about them.

I’ve been thinking a lot about stories lately — about the stories I tell about myself, about the stories I tell about other people, about the stories people have told about me, about the stories the media tells about everyone. I don’t fault people for telling stories. It’s what we do in order to makes sense out of our existence. As Arthur Frank writes, we are beings who, in order to make life habitable, must tell stories from the narrative resources available to us:

“To say that humans live in a storied world means not only that we incessantly tell stories. Stories are presences that surround us, call for our attention, offer themselves for our adaptation, and have a symbiotic existence with us. Stories need humans in order to be told, and humans need stories in order to represent experiences that remain inchoate until they can be given narrative form…  We humans are able to express ourselves only because so many stories already exist for us to adapt, and these stories shape whatever sense we have of ourselves… ” (Frank 2012, 36)

One of the things that comforts me in this life, especially when I feel barricaded in by the absurdities of the things that people say, is to remember that we can rewrite these stories. If we are all inveterate storytellers — incorporating pieces of different narratives and creating new narratives from what exists — then we can always reinterpret and rewrite our stories. We are always free to engage that process. The problem is that stories often masquerade as fact, and we feel cut off from rewriting them at all.

To say that a story isn’t fact doesn’t mean that it’s entirely fiction. The stories that people tell always have truths in them somewhere. But they are not necessarily truths about the purported subjects of the story. A story about me might contain no truths about me at all.  It might contain  truths about the storyteller’s fears. It might contain truths about the storyteller’s trauma. It might contain truths about the storyteller’s desire for power.

There are two sets of stories that plague me. One set consists of the negative stories that people have told about me or about people like me. These stories tend to be pathologizing. Sometimes, they are so ubiquitous that it is difficult to have the strength to analyze, reinterpret, rewrite, and rethink them. But I’m coming to see that it’s the stories that I tell myself about myself that are the most troubling. Some of these stories incorporate the larger narratives, sometimes by design and sometimes unintentionally. Others are a rebellion against the larger narratives. It would be impossible to avoid responding to these narratives in some way.

These days, there is one story of mine whose validity I’ve been calling into serious question. It has to do with Post-Traumatic Stress Disorder (PTSD).

I’ve been dealing with PTSD for nearly my whole life. It began over 50 years ago, when I was four years old. I wasn’t diagnosed until I was in my thirties, and that diagnosis was like the heavens opening up and the angels singing. I know that it sounds like a strange thing to say about a PTSD diagnosis, but how else can I describe the way in which the PTSD markers  — the core narrative elements of the PTSD story — mirrored my own story so well? Suddenly, someone was narrating my story in a way that I recognized.

Over time, I learned to navigate and handle PTSD triggers. I learned to distinguish between a trigger and actual danger. I learned how to detach and breathe and not react when the catastrophic thinking started. I got very good at it.

And it worked for a long time — until a whole new level of protracted trauma came along, triggered the old trauma, and gave me a whole new set of things to heal from. It took me a long time to recognize the new trauma as trauma, even though it went on for 11 years. My husband and I moved to California this year, just to get away from it.

In order to cope all these years,  I’ve told myself a story about how well my old adaptive patterns were working. And so, in true PTSD fashion, I went back to the story that had served my survival as a child — the story in which I was always the person who has it together, who figures it out, who doesn’t show weakness, who helps other people, who never asks for help, who is always on top of things, and who is somehow beyond regular, garden-variety human needs. In other words, I have spent the past decade or more dealing with PTSD by telling myself a story that  am not traumatized. Not really. Maybe I used to be. But surely, not anymore.


These days, that story is showing itself to be largely fiction. It began a few days ago, when my husband left for a visit to the east coast. I felt tremendous sadness. I looked at the sadness and thought, “What is that doing there?” I started to ask the sadness what it was trying to show me. And within three days, I got the message: my body is absolutely racked by trauma. For the first time in my life, I am fully inside my body and it is incredibly painful. The level of stress, of sheer physical tension, of never feeling at ease, of never feeling safe is constant. I look at some of the things I do, and I see how hypervigilant I am.

For instance, there is the way I sit on the sofa and use the computer. Here is a picture of my sofa:

DSCN0098[The photo shows a picture of a futon with a blue spread in a mandala design. There are four white pillows along the back and some beige carpeting is visible in front. A small wooden end table is visible to the right.]

It’s a futon that doubles as a guest bed. It looks very beautiful and comfortable, doesn’t it? But do I sit on this futon comfortably, leaning against the pillows, relaxing? No, I don’t. I sit on the edge, next to the table, with one foot on the ground, looking like I’m ready to fight an intruder who is about to mercilessly fuck with me.

You can see why my story about not being traumatized isn’t exactly working.

One of the things I have noticed recently about my attempt to fend off PTSD is that I have bifurcated the telling of my stories into public and private. In my public writing, I will talk about disability quite openly. But privately, I rarely talk about it at all. For instance, I wrote to my regular doctor today about whether she could help with a letter of medical necessity for a service dog for PTSD, and her response was along the lines of “We’ve never talked about your PTSD. We really should.”

It’s true. We never have. I wrote her back and basically said, “We’ve never talked about most of my disabilities. We really should.”

I’ve been seeing this doctor since May. She knows about my auditory processing disorder. She knows about the problem with my hip. But she does not know about my Asperger’s diagnosis. She does not know about my recent diagnosis of mixed receptive-expressive speech disorder. She does not know about my dypraxia. She does not know about my severe vestibular issues. She does not know about my sensory processing disorder. She only learned about my PTSD today, and I’ve been dealing with that since I was four.

Why hadn’t I talked to her? Partly, it’s that I’m so wounded by many of the assumptions that people make about my disabilities that I almost can’t bear it anymore. I have had so many bad experiences. And of course, the PTSD gets in the mix there, because the PTSD says, “Right. Don’t talk about it. Don’t show any vulnerability. Act like you’re fine.”

I told her why I hadn’t raised the issue. And her response was, “I understand your hesitation.”

So it looks like we’ll be having that conversation after all. I will also be seeing someone for EMDR (Eye Movement Desensitization and Reprocessing) therapy. And I’m making tracks about getting a service dog. I can’t continue to talk about disability publicly and pretend privately like everything is fine.

I sometimes wonder whether passing as nondisabled isn’t sometimes an expression of PTSD. I mean, who wants to deal with all of the crap that gets thrown at us around disability if they can help it? Over the past couple of years, I’ve done everything I can to avoid as much of it as possible. But now I’m tired and my body hurts. It’s time to start telling the people I know in my daily life, not just in my writing.

Perhaps it’s safer to talk with all of you about it. If you’re reading this piece, it’s because you have some connection to the world of disability. But most people do not. And they’re the ones I have to start addressing, even when I feel like one more refusal, one more ignorant response, one more uncaring word is going to break my heart.


Frank, Arthur. W. “Practicing Dialogical Narrative Analysis.” In Varieties of Narrative Analysis, edited by James A. Holstein and Jaber F. Gubrium, 33-52. Thousand Oaks, CA: Sage Publications, 2012.

© 2013 by Rachel Cohen-Rottenberg