Commonalities

In her book about living with schizophrenia, The Center Cannot Hold, Elyn R. Saks speaks of how her psychosis served to protect her from painful thoughts and feelings, how the unconscious mind served as a defender of the conscious mind even in psychosis, and the truth of that reverberated as I recalled how my alters protected me in my dissociative disorder.

Many points in her story struck home for me, as may be true for anyone living with any mental illness, as well as for anyone who is different. Hers is not just a story for schizophrenics, although it is certainly that. Most mental illnesses have areas of overlap, just as Elyn Saks says. For me, my denial of dissociative disorder was a prolonged, steady denial, even when I’d befriended my alters and no longer feared them—I still denied my experience. I hid it from everyone and assumed, as Elyn Saks did with schizophrenia, that others were simply more skillful at managing all that “normal” phenomena.

PTSD was comorbid with my dissociative disorder. My PTSD flashbacks are massively disorganizing. I feel that I am shattering and being destroyed when I’m in a flashback: I feel like I’m breaking apart. The important part of this understanding is how my alters have tried to protect me. In the past, one highly protective alter slit my wrist and said she would keep slashing to stop me from slipping further into the disintegration of my flashback. It may seem counterintuitive to others, but she was organizing me, protecting me.

Another commonality with Elyn Saks’ story, along with denial and unconscious protection, has been my repeated rejection of medication, my need to be my “authentic” self, un-medicated. The one prescription I have allowed is an off-label anti-seizure medication that helps subdue and stop flashbacks of PTSD. I periodically and predictably attempt to wean off of this with varying degrees of success, always finding I need to resume it. I tell myself I should be integrated enough to stop taking it, yet integration isn’t the issue with residual PTSD. Every night when I take those pills, I feel a sense of defeat, as well as the nagging question of whether my dissociative disorder could relapse if I had another overwhelming trauma, even though it’s been three years since the last traumatic break-through of alters.

It was enlightening to learn of the efficacy of psychoanalysis in schizophrenia. Having read a few other personal accounts of schizophrenia, I had not learned this before, yet it was clearly of vital importance for Elyn Saks. I haven’t read many personal “success stories” of dissociative disorder, either. I’ve read of misdiagnosed and wrongly medicated DID patients, which complicated care. I’ve read second and third person accounts, but very few first person accounts, except my own. Other personal accounts contribute to the confusion, except from the ISSTD, the International Society for the Study of Trauma and Dissociation. Their work confirms what I know, (what Elyn Saks also seems to know): the only thing that truly works therapeutically is the relationship between the client and the therapist.

I had over a decade of consistent talk therapy with a therapist who understood me and treated me with respect. Just as Elyn Saks recounts, my therapist did not recoil from me, he stood his ground when I was at my most frightening. He knew better than anyone how I repeatedly abandoned and isolated myself when I was terrorized. He promised to protect me, to never leave. His steady, calm presence held me together.

Isolation is another commonality in our stories, along with the protective nature of our disorders, our denial, our resistance to medication, and the healing properties of long term talk therapy. Sometimes I think my self-isolation is just the nature of dissociative conditions, all the habits of a lifetime. Other times I’m think I isolate myself because I’m so different from everyone else. The truth is that when I feel threatened I have no memory of anyone else around me, they no longer exist—I know I’m alone.

When I attend a NAMI family-to-family group, I do so as a family member, not as the identified mental patient. But I identify from every perspective; I understand terror, I understand the need for autonomy, I understand the family’s helplessness. I understand.

It all silences me, a danger signal sometimes. If I speak up, will someone try to hurt me?

 

Part of This Tree

“Is it in the Valley of Remembrance?” I asked.

“No, it’s more east, to the right of the Valley,” Steve said.

“Toward the Matriarchs?”

“Yes, I think it’s toward the Court of the Matriarchs,” he answered, “in Sunland Gardens.”

When we arrived at the cemetery, it was Sunland Gardens Annex that felt most familiar and we strode confidently toward the olive tree, looking for our pre-purchased double plot. The Annex used to be called Babyland, the old burial ground for children under the age of twelve. Some time in its history—in the Seventies, maybe, judging from the tombstone dates—when it was half filled with its junior sized tombstones, it was renamed and the rest of the section was opened to adult burials.

Standing next to the tree, I looked down at my feet in the grass of what would one day be a hole to receive my body and that of Steve. I wanted to take off my shoes, stretch my toes in that grass. I will one day be part of this tree. A glint of brass around the side of the tree caught my eye and I stooped down to see what it was. A small grave, its tombstone the size of a legal envelope was wedged into the ground where the olive tree roots grew into and around it. The 1969 birth and death date of the buried infant sank in—a baby was in the tree, also a part of its life.

My body knew something I could barely wrap words around—how poetic and wonderful it was that my tissue and bones would deconstruct, decay and share the earth in a field of children and babies. It is divine, actually.

The harsher consideration is the possibility, fifty-fifty, that I won’t go first, and my mind skirts away from that prospect. I want more benign times at our gravesite while Steve and I are both living, to offset that devastation.

There’s a bench behind our tree; it is now our tree.

I am sitting when the grounds-man approaches to ask if he can help us locate a grave. Before long Jorge and Steve are friends, and when Giovanni drives up on his John Deere mower with their lunch coolers, I wonder if we have taken their picnic spot as the three men bond, and I take it in, all of us gathered around our olive tree.

Benign times.

Passover 5775

We have escaped from Mitzrayim.  For all the right reasons—the insights, and values, and choices we’ve made have allowed us to leave.

I knew what I was doing when I left my cousins and brothers and sisters behind in the old country. I was prepared for their loss. I was prepared for their lack of understanding, their arguments against my experience. I had to walk my own path.

History happened. Things became exaggerated, and who could have known where our separate paths would lead? Here’s what I know: I face my sisters and brothers and cousins across a new space of enmity that I wasn’t prepared for. My sister is not my enemy.

We can close the space. There must be—there is—room for her story alongside mine.

     BLESSING:

Barukh ata Adonai, Eloheinu, melekh ha’olam,

I lift up my hands on my behalf,

and that of my sisters and brothers,

and all our children.

May we close the spaces that separate us

as willingly as we embrace our beloveds.

Going to shul

It’s not that everyone is someone important at IKAR, my synagogue; it’s that everyone is someone.

At the end of February, I showed up for Shabbat services, mostly because honoring our friends’ fiftieth anniversary was important to me, even though I’d stayed away from shul since my complicated knee injury around yom kippur. It seemed strange, because we’re hardly ever there, when Melissa asked us to take the fifth aliyah. I’m nobody, I said to myself. I also had visions of my knee buckling at the bimah, of falling down in front of everyone. I said, “Maybe just Steve. I don’t know if I can stand that long,” and Melissa looked disappointed, but she nodded.

After Steve’s aliyah, when the rabbi made some comments before the sixth, she spoke only of me. She craned her neck around to see where I was sitting and she spoke of Refuah Shlema for me, of complete healing. That was what the aliyah was for. For me, before the congregational Misheberach: for blessing, compassion, restoration, and strength in body and spirit.

I can still barely sit with this realization. But I’m not anyone, I thought, and that just isn’t true at IKAR. Anyone who knows me also knows how hard I worked in that moment to stay present, to stay mentally and emotionally with myself in that room full of people pointedly wishing me Refuah Shlema by name. I was stunned. The urge to crawl into the earth, to hide, was strong. It is hard to tolerate being seen. I was being seen and offered love. I don’t know how to accept love, I thought. I recognized a distant urge to self-harm, a primitive way to down-regulate strong emotions. But this is not threatening, I can stay here. So I stayed present. I allowed what couldn’t possibly be mine, with a little disbelief and with deep gratitude.

Exceptions

The first group I belonged to, my family, taught me how unsafe they were and I’ve performed poorly in groups ever since, unless I’m leading them. Even then, I stifle so much fear. This has been true my whole life. As long ago as grade school, I preferred independent study and the value of group work entirely escaped me. I couldn’t sidestep the feeling that I was outside the group, different in ways no one would understand, and I isolated myself, sure that others would do that if I didn’t do it first. This sort of thing can be self-fulfilling, obviously, even if it’s true that one is different in some indefensible way.

When I think about groups, I think about book groups, study groups, committees at work—work itself has and is its’ own group. Churches and schools—classes—all those places where people gather and you find yourself with the same congregation of people time after time. I’ve watched other people make connections in all those situations. People choose friends, go out for drinks, meet for lunch, get together and socialize outside the group—and that’s what I look at and notice and don’t do. I think I don’t know how, that I’ve never known how, that it’s somehow too risky.

I ask myself, has there ever been an exception?

When I participated in group therapy for one year five years ago, I learned that many adult survivors of childhood sexual abuse dissociate, that many even have alternate identities and they never speak of it in group. My mindfulness was challenged when my younger alters leaped into my heart space to greet the child-Parts of another woman when she breezed through the entrance on my very first day there. Nothing like that had ever happened, that my Parts would dance for joy to find another person’s Parts in the room: my un-integrated Parts jumped out to befriend the Parts of another woman in the group. My Parts went ahead and made friends without me and I just tagged along. To me that was more confirmation of how different I was from others at that time, that I couldn’t reach out and connect on my own.

I still pondered this and I wondered was I always alone before? when my granddaughter brought me a stack of books from one of the children’s shelves in my study last week. I noticed The Little Prince, probably too old for a three-year-old, but I opened it anyway and found a long handwritten inscription inside.

It was dated August, 1966, addressed “To my very own Catherine,” and signed, “Love, Bon”. My friend Bonnie wrote of the “millions” of enlightening, revealing, hilarious, long talks we shared and how much she gained from our friendship. She promised, as my baby son Adam’s godparent, that she’d be honored to help him grow up to be the kind of person he’d be proud to be if, God forbid, something should happen to me; and as I read her nearly fifty-year-old words written in the front of The Little Prince, it began to come back to me, all that I’d forgotten, and how close Bonnie and I were during the year I lived in Salt Lake City. Her note is raw and honest and beautiful.

Bonnie and I worked together. We were two ingénues, greenhorns selling books door-to-door in Utah to housewives in the sixties. We went out for drinks after work. We played and did family things with baby Adam on weekends. Mostly, I remember so much drinking at the age of nineteen and twenty—I’m sure I abandoned all inhibitions when Bonnie and I talked and philosophized and shared all our secrets.

My child Parts can obviously make friends, and how interesting is it that Bonnie gifted me The Little Prince? Because those child aspects of me are perfectly tuned in to essential matters of friendship, like “What is her smile like” and “What games does she love” and “Does she collect butterflies,” to borrow from Antoine de St. Exupery. And my child Parts have always regarded the fox with equal measures of fear and fearlessness, for “one runs the risk of weeping a little, if one lets oneself be tamed…” to quote the Little Prince. I am left to wonder how many Parts came out without my knowledge and told Bonnie our story, what secrets I actually shared with her. Our drinking times were very playful, just as my Parts were when they chose to make friends without me.

I consider the wall of inhibitions I live behind, and that alcohol and dissociative disorder have breached it, but I have not. Not yet. What would happen if I allowed my self out a little at a time in a group I belong to? Would it be as humiliating as I fear? Or would there be other exceptions?

After finding her long-ago note in The Little Prince, I looked up Bonnie online and I found her obituary, that she had died suddenly at home in 2007. In the time after our friendship she had married, had two sons, divorced and then lost her ex-husband again when he died, and gone back to school for advanced degrees. She became a social worker, an instructor at the University of Utah, director of a battered women’s shelter and a hospice worker, among other healing professional work.

The Little Prince said, you will be content that you have known me.

She named one of her sons Adam.

Dissociation: popular culture

I watched a TV crime drama last week where the bad guy was portrayed as a “Dr. Jekyll and Mr. Hyde” kind of guy, with two distinct personalities. When the show’s guest therapist figured it out, he said, “Oh, he has DPD, dissociative personality disorder, that’s why he passed the polygraph—we tested Jekyll, not Hyde!”

They figured out they needed to bring out the other personality, that knew about the crime, that couldn’t pass the polygraph test.

The thing that struck me was how an acronym like DPD was just casually thrown about and assumed to be understood in the way MPD, multiple personality disorder used to be understood, even though the recognized diagnosis for what used to be MPD is DID, dissociative identity disorder.

Never mind that the scientific community actually uses the term DPD for depersonalization disorder, a condition that includes feeling disconnected from oneself, but does not include alternative identities. Yet, even though the TV show got that part wrong, it’s so interesting that dissociation itself is a word in a popular TV detective series today.

Three years ago I was repeatedly told by my writing group that I shouldn’t even use the word dissociation because no one understood it, and any explanation I gave, even the most dumbed-down explanation, was criticized for being “too clinical”.

Perhaps some dissociative individuals fit the model they showed on that TV show: highly compartmentalized to the point of no shared awareness with alternate identities. Today, I read the literature and find aspects of my DD, dissociative disorder, that were absolutely true for me, and other aspects that are sketchier. I’m fond of saying that no one is more compartmentalized than I was before integration, and it’s no doubt true for most DD individuals.

I think my main point is that if primetime TV is a reflection of popular understanding of a serious psychiatric condition that has its roots in childhood trauma, we’ve come a long way from where we were even three years ago. DPD, indeed.

It’s a beginning. At least the word has entered our vocabulary. Dissociation. It’s real.

 

We Are Not Who We Think We Are

I just finished a most wonderful and surprising book about a woman who grew up in her early years believing the same-age chimpanzee her family was raising was her sister. It’s a complex story, as you can imagine. Her scientist parents, particularly her father and the ever-present post-doc students who observed the two children, primarily studied the chimp and overlooked the effect on the little girl who was twinned with her from infancy.

Many things happen and the family loses the chimp, who is technically university property—I don’t want to give everything away—and there is this inescapable, down-deep, shattering realization eventually that both the girl and the chimp experience: I am not who I thought I was.

I was not twinned with and raised from infancy with a chimp, but I know that moment.

You could be jumping up on desks in kindergarten and realize no one else does that, only chimps. Or you could be listening in to four or five voices in your head, maybe answering them, and realize no one else does that—you better keep quiet.

I say to myself that I need to learn to be vulnerable, that in Zen there are two doors, the door in and the door out. They both require vulnerability and you don’t get to choose the door in.

The moment of diagnosis, following unfathomable confusion, is the moment of vulnerability, a door in.

So when I accepted my alters, my Parts, and my diagnosis, I had already been through the crisis moments and learned that dissociative disorder could never define me, although it tried. When my Parts integrated and I learned I could speak of dissociative disorder and educate others, I wasn’t really sure how to define myself anymore. Recovered dissociative? Survivor? All I really knew was that I was not who I’d thought I was.

When I looked in my figurative mirror and identified six different people—and more—I thought, I am not who I thought I was.

When I look in my figurative mirror now, I no longer recognize six different people, I see only one and I think, I am not who I thought I was.

So it’s not very wise to get too attached to what we think.

When my leg stopped working last week, my rational assessing brain ruled out DVT (blood clot) before the docs confirmed that and I acknowledged I needed a wheelchair to leave the building downtown, and so on. I kept going back in my mind to Ralph Waldo Emerson who said, “Trust thyself…” and more importantly to Henry David Thoreau’s words, “…not till we have lost the whole world do we begin to find ourselves…” and I knew it had always been true before: there was a back door and I just had to stay present.

Grassroots

It wasn’t that I had no compassion for the DID individual on the stage at the local grassroots mental health support presentation. He was incoherent and dissociating, true. He was no spokesman for healing or for integration, true. In fact, at his phase in his process he claimed integration was impossible and undesirable, maybe even a hoax. It was disturbing enough that I found myself identifying with his DID, and that I saw his incoherence in myself. My compassion overflowed.

The truly disturbing thing about the presentation was his partner. I felt I was witnessing abuse as I watched his partner dominate him, talk over him, answer personal questions for him and even infer his sexual enjoyment of the little boy alters. It was ghastly and I was nauseated. Why would this mental health organization allow such a presentation in their name? The DID individual appeared to be paired with a partner who re-victimized him, who chose him for his alters, for his particular fragility and vulnerability. I still shudder as I think this thought. I am thankful many times over for my husband, for it having never occurred to him to re-victimize my alters when we were going through our journey of Dissociation Disorder and integration. Deep gratitude.

The professional moderator interrupted a few times to offer correct information about DID. In addition, she quietly approached the few people scattered about the audience to whisper, “please come back, it’s not always like this.” Then she took the stage to announce the difference between “brain disorders” and “personality disorders.” The grassroots mental health organization dealt much more comfortably in brain disorders, in the neuropsychiatry and neuropharmacology relating to brain disorders, and she seemed ill at ease with the personality disorder of DID. Of course, she didn’t mention the abuse happening in front of us. She did want everyone to see the difference, with no knowledge of who we were, between brain and personality disorders. Most people in the grassroots organization are involved because of brain disorders. It was apparent that I should have had the good sense, too, to have had a brain disorder, not a personality disorder of dissociation.

Who are any of us if we’re still silent when we see people re-victimized by their partners and spouses? Especially in public forums? What kept any of us, and particularly the grassroots sponsor from asking the overbearing partner to back off, to make it a safe place? And where do we find our people, our support, our family-to-family peers if not in grassroots groups like these?

 

 

Stinger

I think of all the defensive layers of protective armor I’ve contrived over the years, some of them quite ingenious, some of them as banal as antibiotics and cortisone cream, the bacterial warriors of someone who has forsaken her larger combatants, her alternate identities and her self-cutting.

I returned from the writing conference in Ohio, from River Teeth, with a small insect bite on my neck that I barely noticed. By Friday a week ago it had grown and become angrier and redder. The next day I took my neck to Urgent Care – sheepishly, it was only an insect bite – but even though it didn’t have a necrotic center, it was different. There was cellulitis, the doc said, as he took a pair of tweezers, pulled out a stinger, and put me on two different antibiotics and a cortisone cream. Stranger things have happened, I thought, not for a moment recalling anything that left a stinger in my neck, but happy enough to have some extra defense on board.

My regular defenses tripped me up in Ohio when I tried informally to say the heart of my book in three minutes, standing on one foot, so to speak, to anyone who asked and each time found myself stammering awkwardly about Dissociation, quickly aware that almost no one knew what I was talking about, hiding behind all the wrong words. It was so much easier to write my book than to say what it was about. Speaking of it mirrored my hesitation about being the “crazy one” in the room.

I’ve been actively working on articulating this for the last twelve days at home, practicing on friends at parties, and soul-searching with my activist HIV-positive friend, an inspiring choice, as he speaks publicly and often and frankly to school groups of all ages. So he knows how to say who he used to be, and who he is now, and how he got here, openly and succinctly. He showed me his heart again, and I “got” it, that I, too, can speak as directly as I live.

I realized I could simply say my book is about survival and integration from having split into many selves, or multiple identities, when I couldn’t handle the particular trauma of my childhood. And that integration is central.

I really didn’t need to wrap myself in figurative antibiotics and cortisone cream and technical words to get past the stinger of multiple identities. I was wrapping myself in stammering and hesitation, protecting no one and isolating myself. Speaking my truth, living my life is the best antivenin. That process happens to be less isolating, too… Still, I genuinely did need the actual antibiotics so the analogy falls short… except that I don’t need to be alone; there are people who listen and there are people who have had stingers of their own.