When it won’t go away – on managing chronic conditions in the academy

An important part of the initiation of Write Where It Hurts came from Xan Nowakowski and J. Sumerau’s experiences collaboratively managing chronic conditions in relation to their professional and personal relationships.  Building on Xan’s previous post in this area, in this post J. Sumerau reflects on aspects of managing chronic mental and physical health conditions in hopes of facilitating dialogue about these issues within and beyond the academy.

Although often invisible to the naked eye in social and professional interaction, estimates suggest as much as half the American population live with chronic mental and / or physical health conditions, and must manage such conditions throughout their daily lives. In this post, I reflect on some of my own experiences as one of these people in hopes of facilitating dialogue on this subject.

In so doing, I am seeking to build on the bravery of other scholars who have already addressed experiences with chronic conditions in many ways. Whether we look to recent blog posts (often anonymous) by people exploring, for example, aspects of bipolar conditions, experiences along the autism spectrum, managing dissociative identity disorders, or persistent anxiety, we can already see the silence around chronic conditions beginning to dissipate. I thus seek to contribute to these voices in hopes of continuing to, as DeWelde and Stepnick title their important volume exposing gender inequality in the academy, “disrupting the culture of silence” around chronic conditions in the academy.

To this end, I want to start by noting that on the surface – or from the outside so to speak – I generally appear to be a rather productive scholar. In fact, I regularly encounter people (well meaning, kind and complimentary people, best I can tell) who say things to the effect of “how do you get so much done” or “I wish I was as productive as you” when they realize that I only began graduate study 7 years ago but already have over 30 academic publications. I appreciate the kindness and compliments these people offer me, and I am proud of my work personally and professionally because doing this work is the closest I ever get to feeling like I might fit in somewhere.

I do not, however, note these experiences to boast in any way. Rather, I note these experiences because people might never think of me when they hear about scholars managing extremely painful and difficult chronic conditions. I have regularly heard people at conferences and in other settings assert negative stereotypes about people with enduring mental and physical conditions, which suggest these people are rare (false) and / or that these people are obviously or automatically different or deviant (false) and / or that visibly managing conditions or otherwise these people are somehow less capable than their normatively bodied or mental colleagues (false again). Like many of the scholars I am aware of managing such conditions, my constant struggle to exist is invisible to the casual glance, and still others face similar struggles managing more visible conditions. In both cases, every scholar I have come in contact with who is managing one or more chronic health conditions is at least as competent as any other scholar I have seen and often actually perform well above the average in their fields (Charles Darwin likely being the most famous example).

The mismatch between stereotypes and actual scholars managing chronic conditions is likely familiar to anyone versed in inequalities scholarship. Similar to people stigmatized via normative or dominant notions of race, class, gender, sexualities, and age to name a few, people whose minds and bodies work differently are typically framed as deficient or deviant. We are called diseased instead of simply different, our experiences are called disorders instead of variations, and our abilities are called lesser instead of diverse. In all such cases, we are assaulted for not fitting artificial norms about how human bodies and minds “should work” so that others who benefit from these norms do not have to reevaluate their own mind and body assumptions. As has traditionally been the case, many of us have realized that these patterns will only change if we begin announcing ourselves to the rest of the world and challenging mental and physical ablest assumptions embedded within academic and other social arenas.

To this end, I would like to share some things about my experience managing chronic conditions that I hope people will think about when they assume bodies or minds should be or work in a certain way. While strangers, colleagues, and acquaintances may look me up, meet me at a conference, see me speak, or otherwise come into contact with me, their view will generally be different from the people closest to me. While such people (based on their reactions to date) will likely see my “productivity” or “talent” first and foremost, those closest to me see how little I sleep because my brain won’t stop working, how many hours and days (and even at times weeks) I spend curled up in a ball in the dark because I feel like the world is trying to kill me, how confusing normal or common speaking patterns are to me and how much energy it takes me to have a five minute conversation with another person, scars scattered around my body from the regular times where it feels like my skin is too tight, and the constant headaches I live with and medicate.

The people closest to me also know that I always keep pills and ice packs nearby because I’m always in at least some physical pain due to issues with my legs. They also know that I regularly hear and see things that other people do not, and get used to me randomly having conversations with people and things they cannot see when we’re together. They also understand what its like to get a call from me when I’ve forgotten who I am, when I don’t know where I am, when I’ve gotten lost on the way to work again, when I think they’re dead but I want to check, when I think I’m dead but want to check, or when I can’t figure out how to put on clothes or feed myself. They also have the patience to look after me when, for example, I wander off following something that they can’t see, disappear mentally in the middle of a conversation without realizing it, or ask them if they’re real because I suddenly don’t know. They also understand when I throw out all my spoons because I’m convinced they’re out to hurt me, when I go whole semesters without working on our projects because my brain just won’t work, when something as simple as going to the grocery store terrifies me or tires me out emotionally, or when I just can’t interact at all for a while and need to be completely alone in silence or with music.

The people closest to me also are not surprised when I don’t buy shoes with laces because they already know that while I can memorize books I can’t tie shoelaces. They are not surprised (and often kindly try to protect me) when the thought of anyone being behind me terrifies me, when human contact makes me literally sick to my stomach (a wonderful example was a friend at a conference who once made controversial statements each time someone went to shake my hand so they would be distracted and I wouldn’t have to explain why I was not going to touch them), or when I have trouble even breathing in a large group of people (even people I like and care about) because I feel like the presence of others is suffocating me. They can even explain to other people why I spend so much time outside since sometimes walls feel like cages, why its much better to contact me online where I don’t have to talk to or see anyone, or how I might shift from the most hyper person they’ve ever met to the most comatose person they’ve ever met within a few minutes.

As you can probably tell, the people closest to me are wonderful people who make a very difficult world more comfortable for me in numerous ways. I find myself appreciating them more than words can say every moment I’m conscious, and without their efforts every aspect of my life other than writing would be much more difficult because I work in a profession where who you know, networking, and other social interaction skills are often just as and / or far more important to careers than how productive you are. This was a hard lesson for me when I arrived in the academy because I can write 10 or more solid articles in a semester but I will never know what to say at a mixer or conference surrounded by frightening strangers. This is all the more important because the conditions that facilitate the above examples are not likely to ever go away, and thus an academy based on the ability to “make small talk with the right people” automatically disadvantages me no matter how good a researcher I am or become.

I am able and willing to share these aspects of my experience, however, because in many ways I have been lucky enough to receive incredible emotional and instrumental support throughout my time in the academy. The people closest to me and especially my life partner, for example, are very understanding and protective of me, and many of them have the resources to protect me even if my disclosure leads other to stigmatize me in some regard. Likewise, I am incredibly productive because, as Matt Damon’s character says in Good Will Hunting, when it comes to research and writing – I can just play. I might not be able to do most of the things normatively bodied and minded people do so easily every day, but I write on as high a level and as fast as anyone I have ever met. The same things that make most of social life so hard for me provide me with abilities that are perfectly suited to the scholarship part of an academic career (i.e., I can read a book in an hour and memorize it, cite findings from years past off the top of my head, take apart anything I read or see or hear and turn it into patterns and themes without even meaning or actively trying to, etc.).  Further, from my earliest days in graduate school to my present academic position, I have had mentors in my programs, in other programs, in Sociologists for Women in Society, and in Society for the Study of Symbolic Interaction who were and still are kind enough to accept and help me in countless ways as I try to survive the necessity of being social in the construction of an academic career.

It is also with these resources in mind that I remain well aware that many people managing chronic conditions everyday cannot safely speak out about their experiences, marginalization, and /or aspects of ablest bodily and mental assumptions and norms that impact their academic careers. I also know all too well that in many cases chronic conditions do limit productivity in terms of normative metrics like publishing in much the same way they limit me socially, and the only way to shift these burdens is for those of us who can to start speaking out and advocating for a more realistic understanding of the multiple aspects of scholarly experiences and lives and the natural variation in the ways human bodies and minds operate.

I thus share my experiences in hopes of facilitating dialogue concerning the management of chronic conditions in the academy (and elsewhere), steps we could take to provide resources for such management within academic settings and programs, and concrete ways we could begin to shatter the stigma and silence surrounding this prominent and widespread experience. For many people, mental and physical conditions will not go away, but if we work together, we could get rid of the ways current academic norms, simplistic and conformist assumptions about bodies and minds, and silence surrounding mental and physical health within and beyond the academy punish people for their pain. In so doing, we might instead create a culture where people experiencing the wide variety of empirically common bodily and mental types and forms are celebrated, affirmed, and accepted as full beings capable of providing diverse perspectives on a complex bio-social world.

Caught in a Dream: Discovering an Integrated Self After Dissociation

This post will be the first of two focusing on ties between sociology and popular music. In this first entry I use the music of one of my favorite artists (Alice Cooper – all the block quotations below come from Alice Cooper’s songs and may be found here) to explore and narrate my experiences of dissociative identity.

I discuss how I developed this condition, how I lived with it for years without knowing that anything was amiss, and how I eventually discovered I had it because I began to reintegrate on my own. In the process, I talk about the development of my career as a medical sociologist and how I conflated functionality in the workplace with overall mental well-being. I also discuss how I have used music to understand my experiences, and as a tool for moving past what I now regard as a very dark time in my life.

Next week on the SSSI Music Blog, I will be sharing a guest post with some interactionist analysis of Alice’s music! This second post will focus on identity work and the presentation of self, using Goffman’s concept of masks to explore how Alice negotiates his personal and professional identities through song.

Thought I was living, but you can’t never tell. What I thought was heaven turned out to be hell… When you see me with a smile on my face, then you’ll know I’m a mental case. I’m caught in a dream, so what? I don’t know what I’m going through. I’m right in between, so I’ll…I’ll just play along with you.

When I was diagnosed with Dissociative Identity Disorder, everything I thought I knew about myself crumbled, leaving me to sort through the dust for pieces of someone who might once more be whole. I never expected this, never suspected a thing for the 12-plus years I lived with this condition. From the time I was very young, I had felt a strong and cohesive sense of identity. My parents named me “Alexandra”, and I still use this name in formal writing. But my two year-old self quickly chirped “I’m Xan” at anyone who used my given name verbally. I felt very strongly that this was what I should be called, and my parents recognized and affirmed this desire. To this day, everyone who knows me in person or on social media calls me “Xan”.

Well, I told her that I came from Detroit City, and I played guitar in a long-haired rock and roll band. She asked me why the singer’s name was Alice. I said “Listen baby, you really wouldn’t understand.”

Identity work would later become tricky business for me. I am a donor conceived person, the biological product of one of my mother’s eggs and the sperm of an unknown donor. In my mother’s words, my father “adopted me before I was born”. He is the only real father I will ever have, but even as a young child I somehow knew that we did not share any genetic material. I had a sense of something being missing, someone else being relevant. I asked my parents repeatedly about this, but they had no vocabulary to discuss it, and fear tied their tongues in knots. Neither wanted to risk upsetting the bonds between us, even though they had always planned to tell me the truth of how I came into the world. We were so close, even though that closeness sometimes came with pain as parent-child relationships tend to do. But I had never felt any pain like this.

“I got a baby’s brain and an old man’s heart. Took eighteen years to get this far. Don’t always know what I’m talking about. Feels like I’m living in the middle of doubt, ‘cause I’m eighteen. I get confused every day. Eighteen, I just don’t know what to say. Eighteen, I gotta get away…”

When it finally did come tumbling forth, the revelation of this fact—the hardest story my mother ever had to tell—was the very thing that split me in two. Suddenly the question I had asked my parents periodically throughout my entire childhood and adolescence suddenly had a different answer now that I was 18, an adult in my own right. I knew that my mother was crying silently into her wine glass and that the landscape stretching before us—an immense olive grove in Delphi, Greece—seemed to swallow my words before they made any sound. I cried too, not because I had really learned anything new about how I must have gotten here, but because I had lost the ability to trust either of my parents. At 18 I knew enough to know that rebuilding that trust would be a long process, if I managed to succeed with it at all.

“And I know trouble is brewing out there, but I can hardly care. They fight all night about his private secretary—lipstick stain, blonde hair. What are you gonna do? I tell you what I’m gonna do. Why don’t you get away? I’m gonna leave today…”

In the years that followed, I would leave portions of myself behind without even knowing I had abandoned them. I suppose my definition of the situation had changed to one of survival, the world fading to a dull gray in places where it had once been bright. It was in this state that I made some other choices with my life that I probably would not have made had I not already been dissociating. As I write this, I hold a lot inside, the realization cutting through me anew that my first spouse never knew all of me, because I was already broken apart when we met. We both suffered because of it, I think. And as much as those things hurt, I have been fortunate to have his support in the years that brought my first steps toward healing, and the final horrible moment where everything crashed back together. He had also supported me during a time when my family seemed to be coming apart at the seams. I look back on those days with sorrow and empathy where once I felt only numbness, the absence of something that had once been.

“She’s an overnight sensation in the mirror on her wall. She gets a standing ovation at every shower curtain call. And she becomes a pop star in the safety of her car. And then she falls to pieces at the karaoke bar. And she’s perfect, until the lights go on. And then it all goes wrong, ‘cause now she’s not so perfect.”

Seemingly overnight, I lost interest in activities that had once delighted me. I did not realize this at the time, of course. It was only years later that I would look back and realize how little I had sung aloud, played instruments, or otherwise participated in music with others. I would buy budget CDs—a hobby of mine—and go to concerts occasionally. But I never sung in front of others, except occasionally with my first spouse in moments where I felt a strange and desperate desire to reveal something deeper about myself. Maybe those were attempts at recovering a person who was gone, identity work by force and sheer grit. As my desire to produce music faded into a black space masked by amnesia, I developed an almost obsessive fixation with my studies and developing my career, which itself would take many twists and turns as my physical health spiraled downward. I would sing only in the quiet moments at night when my spouse was falling asleep, perhaps because then I could convince myself that my words went unheard and that part of myself would never surface. We did not talk about it, and in retrospect I feel glad that he did not know just how much of me had been lost.

“I sent you a postcard, thought it would be funny. Would have sent a souvenir, but they took all my money. It’s pretty warm down here, but it ain’t sunny… And I’m having a hell of a time, my dear. Wish you were here…”

My former husband could see the pain in me, and often did a wonderful job of giving me space to talk about it in those early years. I still believe it was because of him that I was eventually able to talk a bit with my family about how much it had hurt to be lied to. But after one conversation in which I forgave both of them, I shut down in even worse ways. It was as if that act of forgiveness had cleaved me fully in two, a sort of transference of blame onto myself for the hurt that I had internalized. There were no more songs after that day, not even when my spouse slept. I pulled away from everything, save for the work that I had come to regard as my entire life’s mission and meaning. This was of course complicated by the fact that I was beginning to die properly from a chronic disease that had haunted me my whole life, culminating in a four-day stay in intensive care when I was 23.

“This quiet place, it ain’t so new to me. Its haunted atmosphere has heard so many screams. My home away from home, my twilight zone, my strangest dream… My confidant, I have confessed my life. The Quiet Room knows more about me than my wife.”

The night I was told that I would likely die may have started me on some kind of path toward healing, as the resolution of those inchoate feelings with the affirmation that my health actually was in crisis gave me a renewed sense of purpose in life. But it also started me on a path towards a different kind of separation. I stayed with my spouse for another two and a half years after that night, but emotionally I was drifting away into a dark, narrow space where no one could reach me. I stopped feeling the most basic of emotions. Everything was white noise. I had one facial expression—a sort of half-pout that always made it look as if my face were in transition to a different state, but I never made it there. I was frozen. The pared-down self I had embraced bloomed within its planter, branching out into new crevices of study and inquiry. I grew tall within an invisible cage that seemed to expand as my professional life did. But even though I did not remember the parts of myself that had been cut away, others experienced them.

“Mind gets scrambled like eggs, gets bruised and erased. When you live in a brainstorm, noise seems logically right, ringing in the night. Hard hearted Alice is what we want to be. Hard hearted Alice is what you want to see.”

I probably said and did things in my first marriage that I do not remember—expressed anger, pain, sorrow that my lucid self kept inside. All I remember is feeling numb, and wanting to sleep for a very long time. I sang no songs and played no instruments in those years, but I took a lot of comfort in my music collection. I had discovered Alice Cooper’s music when I was 15 years old, and that discovery led me to many of the happiest things in my present life. It gave me the opportunity to meet the person who, other than my life partner and parents, I still consider to be my best friend. He was the one person I really shared music with in any depth during those lost years, and indeed one of the only people I allowed myself to talk to in detail about my feelings concerning my donor conception and its aftermath. I had become an adult with him in some ways, so many of my first experiences of intimacy being tied to him and so many of the most glorious moments of that time being spent with him. I was 18 and did not need to know what I wanted. I could enjoy moments more on their own terms, an ability I would later lose.

“Little do they know, when I’m alone in bed at night, I become the king of the silver screen. I stare at the ceiling there; I know where I belong.”

I am not sure if I can fully explain why Alice’s music captivated me so much and so quickly. I know that the way in which I discovered him—watching Behind the Music on VH1—exposed me to his life story and the struggles he had endured in coping with alcoholism. But what struck me most of all, even at 15 with my own worst days still well ahead of me, was how he seemed to have figured out how to be two totally different people and still be one integrated person. I was going through a rift in my own life where I had to decide on a direction. In one corner were the performing arts that I had spent so much time and energy on, and loved so well but was questioning as a career choice. In the other were the research and writing for which I had always shown so much promise, and on which I could see actually building some semblance of a stable life. It fascinated me that Alice had simultaneously developed this grandiose persona who defined his professional life, and yet people knew him professionally in other ways too—a philanthropist, a golfer, a music educator, a producer, an actor, and eventually a restaurateur. And his personal life somehow supported and yet remained wholly separate from these things, a place from which he beat back darkness by sheer grit as he recovered from alcoholism and embraced a future with his partner and children.

“If I ain’t cool, my daddy gonna send me to military school. If I ain’t nice, my girlie gonna freeze me with cold shoulder ice. If I’m real late, my teacher gonna use me for alligator bait. So I better be good, I better be good.”

At the time, I simply chose a path and figured I would do the other things as a hobby. But when I began to dissociate three years later, the part of me I had left behind in professional focus seemed to die entirely, becoming lost to me. In the beginning, I remember thinking that being just the one person—the researcher, the academic, the writer, the serious scholar—would make me more pleasing to my parents. After all, how could anyone deny that I was their child if I were just like them, an apple dropped from a nearby tree? Neither of my parents liked to put on makeup and travel to far-off places within themselves, though I would later learn that my mother had actually been quite involved in performing arts herself at a young age. She is also a musician who almost never plays. The apple did indeed fall close to the tree, but perhaps not quite in the ways I intended. I was caught between the desire to be just like my parents and to cut myself off from them completely, and it seemed that professional development held the key to achieving both of these things simultaneously. Perhaps ironically, it was this choice—to become an academic researcher, but to do so in my own image and to chart a different path than my neurobiologist parents had—that led to my own intimate and professional partnership with a fellow PhD.

“The world needs guts; the world needs power. Show me some blood; show me some cuts; show me some scars. The world needs guts; the world needs us.”

Somewhere along the way, I grew legs and decided to heal, to leave the tree behind for greener pastures. I also chose to stay right where I was, by that point a successful academic in my own right. The choice to heal was not random, and I suspect that the single strongest factor in that choice was my relationship with my life partner and the healing I saw hir doing when we first met. Apparently ze recognized signs of DID in me from the earliest days of our relationship, and perhaps more amazing to me in retrospect is the fact that I trusted them enough to open up about my own suspicions that I might have more than just PTSD myself. I did not remember these moments, of course—I had no physical evidence of them and they vanished in the storm before the calm that signaled my reintegration. In the meantime, I had managed to acquire almost every Alice Cooper album ever recorded, and listened to them with almost obsessive regularity despite rarely listening to other things more than once in a blue moon because I simply had amassed so many albums. I loved being surrounded by my music—it served as sign equipment to suggest that things were all right, that I was home and that I was well. These signifiers were living, breathing proof to me that I had not lost everything, even as I failed to remember that once I had made music instead of simply listening to it. I would later learn just how deep those black patches in my memory went, and how many had formed.

“My tape recorder, it must be lying, ‘cause this I just can’t believe. I hear a voice that’s cryin’, that’s not me. The wheel goes ‘round; I hear a sound. It’s coming out all wrong…and I swear to you, I never wrote that song. I been living in my own shell so long, the only place I ever feel at home. And oh, that music. I hate those lyrics. It stayed inside me so long…and I swear to you, I never wrote that song.”

I managed to be very functional while living with DID—a successful career, several intimate relationships and close friendships, and a great many positive experiences that seem no less sweet for their birth in darkness. I also now know that many of the more negative experiences I had during this time fed into and reinforced my dissociation, creating a vicious cycle that trapped me for years. So I never suspected a thing until I met my partner, who reminded me a bit too much of myself for comfort. They brought out something in me that I couldn’t quite describe, an endless sense of fascination and wonder much like what I had felt for Alice and his music the moment I first listened to him speak. Here was a person who was not just two, but many different people, all at the same time! It made me question everything I thought I knew about identity and selfhood. They seemed to cross every boundary the world had and a fair few of mine as well. And perhaps as a result, the wall between the self I lived with every day and the one that had broken off to shadow me quietly began to crumble in places. I felt my body starting to light up with music again, bits of songs bursting out when I thought nobody could hear.

“Sometimes when you’re asleep and I’m just staring at the ceiling, I want to reach out and touch you, but you just go on dreaming. If I could take you to heaven, that would make my day complete, but you and me ain’t movie stars. What we are is what we are…and I tell you babe, well that’s enough for me.”

Of course, someone could hear, and would later tell me so during the terrible moments where memories overwhelmed me. If you know me outside of Write Where It Hurts, you already know that the person in the person in the story is the person who edits this blog with me, my partner and future spouse and unquestionably the love of my life. J could go everywhere when nobody else could—not my parents, not my closest friend, certainly not my first spouse. I never gave any of them the chance. Studying for my PhD seemed easy compared to the things I began to learn about myself in J’s presence. I would later learn that I met a lot of these discoveries with anger and rejection, sometimes in waking life and sometimes during sleep. Either way, I never remembered a thing; the abandoned parts of myself trailed me like shadows, vanishing when I actually tried to look for them. But falling in love—probably the only time I have ever really done that, and understood what it means to be “in love” with a person—was also easy. I chose not to freeze out the desire to be close to this person, and instead to open myself to them. What I was not prepared for was what would emerge when I did.

“Welcome to my breakdown. I hope I didn’t scare you. That’s just the way we are when we come down. We sweat and laugh and scream here, ‘cause life is just a dream here. You know inside you feel right at home, here. Yeah, welcome to my nightmare.”

Over the next few years, I would learn a lot. Some of that would lead to a PhD in medical sociology. But with the PhD out of the way, I was left to deal with the rest without school to distract me on top of the full-time research job I had continued to hold. I was a new faculty member, with students of my own and “Doctor” ringing in my ears. I began to feel strange. Memories were scratching at the surface of a dark lake, making me question my eidetic nature. I remember things in exquisite detail, even if they seem fairly insignificant to others. A useful skill in school, but murder on anyone dealing with trauma. Years of agonizing chronic pain and the unfortunate fallout from those experiences in other areas of my life had left me with post-traumatic stress disorder—that much I already knew, and had accepted. I had a partner who understood those things firsthand, so I figured I would do all right. My partner was also empathetic beyond all reckoning, something I would later reflect on when trying to put all of this together with lyrics from Alice’s massive recording catalog. Having read a lot of interviews with him over the years, I was always struck by the degree to which his relationship with his life partner and how they continued to shape each other seemed to parallel my own experiences with J.

“I wonder if anyone missed me. Or have I been gone so long they thought that I’d died? How many said, “I wonder what happened to Alice?” How many shrugged or laughed? How many cried?”

What I had not realized was that my brain had shielded me from the worst of the memories, turning them into empty spaces that got covered over by the richness of all my other recollections. How could I have blank spots when I had so many vivid images and sounds, such perfect recall? J watched me unravel, knew there was nothing for it but to let it happen for me just as it had for hir long ago. Even writing these words brings tears to my eyes. I have not done as well with forgiving myself for the pain my own healing process caused my partner as I have with forgiving J for the similar experiences they went through years prior. I am not even very adept at remembering that the catalyst for my reintegration was formally proposing marriage to J, knowing full well what the answer would be. I cannot even think about that night without finding endless flaws in what I did and what I said, a night J sees as perfect because of what it meant for our future. Perhaps in time I will feel that same kindness toward myself—it does get easier. I have heard Alice talk about this in his interviews and writings, and I have to let myself believe it. If he could have a happy ending of sorts after so much struggle, and find such inspiration in reconciling pieces of himself that always seemed to be at odds before his recovery, perhaps I can too. I certainly listen to a lot of Alice these days, with a new appreciation for the magnitude of his work both on and off the stage.

“Hello! Hooray! Let the show begin; I’ve been ready. Hello! Hooray! Let the lights grow dim; I’ve been ready. Ready as this audience that’s coming here to dream. Loving every second, every moment, every scream. I’ve been waiting so long to sing my song. I’ve been waiting so long for this thing to come. Yeah, I’ve been thinking so long I was the only one…”

J also takes me to see Alice perform whenever he is nearby. Living in Florida, this happens a lot. It is perhaps fitting that the first time I ever got to see Alice perform came at the height of my breakdown, that horrible month in which I spontaneously began to reintegrate and promptly freaked out because suddenly another person was inside of me. I had no idea how to deal with this other person who was absent one moment and present the next. I raged at myself and lashed out at J. During those days I was essentially a heat-seeking missile for whatever actions and words would hurt J most of all, push hir as hard as I could, seeking the rejection I had gotten on such a fundamental level that had split me apart in the first place. Alone in Delphi, the treasured memories of knowing who I was a million miles away in distance and spirit. Alone in a hospital room, life leaving my body as I tried to hang on. Alone in my pain, huddled on the kitchen floor with thoughts of suicide. Alone in the black patches my mind created, alone with my music, alone with the research that never quite seemed to fill that hole inside.

“I walk the streets alone; on feeble bones I ride. My sins are etched in stone; I got no place to hide. Well, I was unshakeable in what I did believe. I feel so breakable, but have I been deceived?”

At the end of a week of tears and questions I did not feel remotely ready to answer, the Alice concert was a galvanizing experience, a lifeline thrown down the dark well I was in. The night felt that way both because of the music and because of whom I was sharing it with. Even in those moments where I had tried so ardently to push my partner away, they were there, loving me and affirming me. I could be two people inside one person, and loved for both and the sum of their parts in equal measure. If it worked for Alice, why not for me as well? The night gave me hope. It put me on a path back into myself, gave me the motivation I needed to get integrated and stay integrated. I began seeing a psychologist. This helped so much that I only needed a few sessions to start doing the work of integration on my own, outside of a clinical setting. And while it cut deeply to discover how far the gaps in my memory went, and the horror of what had vanished inside of them, I do feel that it ultimately helped me to hear from an informed professional that I had dissociative identity. The scary moments and behavior I experienced in the summer of 2014 were, in his words, an “integrating episode” that signaled the beginning of a new journey.

“Well, people love to talk when I can hardly walk. To them I’m probably just the News at Eleven. It’s the edge of night, as the world turns. Misunderstood, it’s just the wrong medication. I wish, I wish upon a star. I wish it hadn’t gone this far. Been up so long it looks like down to me…”

Slowly at first, I started talking about my experiences and the memories that were coming back, even when doing so caused excruciating pain. I suppose that like Alice, I have never shied away from a bit of blood, or from a difficult challenge that at first leaves one feeling more alone than they ever had bfore. I allowed myself to trust both J and my parents in ways that I had not before. And finally, I told my parents my own terrible truth: I have DID.   It started the night you told me the truth. I’ve blamed myself for everything for 12 years. I tried to make myself into the person I thought you wanted when you made the choice to have a child that way. I can’t do that anymore. I need to get well and I need you to love me when I do. I need to hear it again, what you always told me when I was a child—that you would always love me, no matter what. I need to hear that and I need to let myself believe it. They told me, of course. They felt relieved too. They had spent the last 12 years questioning their choices, worrying that they had caused me irreparable harm—for my entire life with a chronic autoimmune disease that clearly has genetic origins, and likewise with the pain of knowing even before they told me that I was not like other people.

“I guess I’m a loner and I don’t fit in. I ain’t too comfortable in my skin. And I don’t play well with the others… I’m stuck somewhere between high school and old school. I can’t decide between my rules and your rules…”

One of the worst things for me as an integrated person is knowing that I will never see the other person who made it possible for me to be alive. They will always be a blank space in my mind, a lack-of-memory, an empty set. I have some genetic information that I got from doing basic saliva testing. But that is all I will ever have, other than my parents’ musings that the donor was probably a medical student. I do wish I could see a picture. The curiosity killed me for years, ate me up inside. When I did tell my parents I felt that way once I began to reintegrate, they smiled and said Of course you do. It’s natural to feel curious. We wish we could give you that information, sweetheart. We wish that with all our hearts. It made things easier, knowing that my parents felt that same kind of cognitive dissonance between their perceived roles as parents and the reality of our situation. Again I thought about Alice, and the love his own parents always showed him even as his life diverged from theirs in very striking ways. People do not need to look alike on the outside to share deep roots on the inside, and this is what I now tell anyone who remarks on how different my father and I appear on the outside. My dad takes a more succinct approach: Irrelevant. You’re obviously my daughter.

“You were screaming for the villain up there, and I was much obliged. The old road sure screwed me good this time. It’s hard to see where the vicious circle ends. I’m stuck here on the inside looking out. That’s no big disgrace. Where’s my makeup, where’s my face? On the inside…”

When I became fully integrated and felt confident that I could stay that way, I knew it without question. I celebrated by agreeing to let J buy me an engagement present at long last, something music-themed like the one I had chosen for hir long ago. The specific present I picked was really more of a present for the person who had broken off than the one who had always been at the center of things, which is probably why I chose it. I play my Gaspar 3R, an electric guitar modeled on the Fender Stratocaster, almost every night. It calms me and makes me feel happy to be whole. It lives in my music room, along with the little Yamaha Junior folk guitar J bought for me when I decided I wanted an acoustic as well. I never had a single lesson, just taught myself. I have been playing for only eight months, but can fool professional musicians into thinking I have played for several years at least. Guitar came to me naturally—something I was born to do and never had to think about too much. I get that from my mother, I think. She has gone on a journey of her own these past few years, charting boundaries on her own career and nurturing a passion for medical education—so much that she has left the world of basic science. Last winter I heard her play guitar for the first time in more than two decades. No Alice songs, but she has her own watershed artists who can sing her life story with a few well-chosen words.

“Well, I live at the 7-Eleven. Well, I’m trying to play this guitar. Well, I’m learning Stairway to Heaven…’cause heaven’s where you are.”

One of the first songs I taught myself to play on the Gaspar was Alice Cooper’s “I’m Eighteen”. I play it so much that I have begun to experience a bit of auditory dissonance when I hear the original version from Love It to Death or the many wonderful live versions of the song, but I think I love them even more now that I can also play my own rendition. People recognize the music instantly when I play it. There are some things that time and experience do not wash away, even for people without eidetic memories. No matter how many times I listen to Alice’s records or see him perform live, I never lose that sense of magic I felt when I was 15 and just discovering his work. Indeed, that magic has grown stronger over the years as it has helped me to feel whole again. And part of that process has been accepting that feeling broken and confused at times, like being 18 and just not knowing what I want, does not mean I am not whole in my present form.

“I was scared to death, afraid to close my eyes and find that I was gone. Like every other one who left before the dawn, I vanished in the air. Am I still there? Wake me gently, if you can. Wake me gently; just touch my hand. Wake me gently, pull my sleeve…’cause where I’m at is where I want to leave.”

I am two people. I am the ambitious academic who regularly ventures into uncharted territory, who breaks silences and explores taboo topics and shows their scars. I am the professor whose students say, You changed my life. When you told us your story, you gave me the courage to tell mine too. These days I do not think of sharing as a courageous act so much as an important mission, something to be done at any cost. What requires more courage, often, is sharing those other parts of myself that vanished into the dark spaces of my dissociation. Not the music itself, perhaps, but the process of creating it. Yet I am that person just as much as the other. I am the singer who can belt out a soul song in front of a room full of strangers without batting an eye. I am the guitarist who cringes when a couple of strings are even a quarter-step off. I paint my eyes at night to sing or dance, and wash them in the morning to study and teach. I am also one person who does all of these things and is loved—by my partner, by my parents, and by many more friends than just that one whom I never completely shut out. I have learned how to be whole, with or without greasepaint and costumes. I have reaped the benefits of making music not only cognitively, but physically as well; guitar is the best therapy I have ever found for my Raynaud’s syndrome as well as the anxiety I often feel. And I am learning, day by day, how to forgive myself those years I spent in dissociation. Life is a process of becoming…and if Alice has taught me one thing, it is that there are always chances to rearrange one’s act a bit before showtime.

“Don’t get me wrong; don’t get me right. I’m not like you are. When I get home from work at night, I’m blacker and bluer. So I escape; I get out when I can. I escape any time I can. It’s all escape; I’m crying in my beer. But where am I running to? There’s no place to go. Just put on my makeup, and get me to the show…yeah, escape. Yeah, what are you waiting for? My doctor said “Just come around, and you’ll be taken care of.” And while he ran my problems down, I stole his mascara. That’s how I escape.”

Xan Nowakowski