Writing: Alone.

Craig Wood is a public school teacher as well as a PhD candidate with an interest in reflective practice methodologies. In this post, Craig’s reflections on lived experience and his conversations with fellow post-graduate colleagues become data and are expressed as a fictional representation. Where are you located in this story?

Promising himself just a short break, Frankie stepped out on to the terrace of his hotel suite. He was still 2500 words from finishing his Masters thesis and he could sense the demons of apprehension closing in on him.

Frankie sipped from his water bottle, drew a breath, and closed his eyes. The cacophony of noise from the Vegas strip below was somewhat dampened by nearly thirty stories of distance.

– Shrill screams from the Big Apple Coaster as it roared and clanked by the Statue of Liberty – The crisp sound of someone elegantly breaking the surface water of one of the hotel’s five pools

… laughter …

– Chinking glasses and cutlery falling on crockery

… voices …

– From the car park below, the bone jarring rattle of a hot-rod turning into West Tropicana Avenue and vibrating through the still air into the distance.

Then, the theme from Happy Days, Frankie’s ringtone for his manager, Sid. Frankie thought to reject the call but

– Hey Frankie! It’s Sid. Ya there yet?

– Yeah Sid.

Where are ya?

– I’m on the terrace.

Da terrace! Wadda ya mean ya on da terrace? Ya not spendin’ all damn day in dat hotel are ya?

– I just need to get away from everyone, Sid. Lock myself up. And write.

Frankie it’s Vegas! I gottya da best damn room, Frankie. Hey! Tell me I’m da bes’ damn manger, Frankie. Look down dat strip and tell me whadda ya see?

– Vegas, Sid.

Tha’s right, Frankie. Vegas. Three nigh’s time: You. Me. An da best damn ticke’s in town. Pacquiao V Bradley3. I’m da best ain’t I Frankie? Tell me I’m da bes’ manger.

– Yeah.

I’m da bes’?

– Yeah.

Good boy, Frankie. Now don’ go bustin’ yaself up on dat book o’ yours. You’re back in Vegas, Frankie. It’s your town. They luv ya!

– Yeah.

I’ll call ya tomorro’, Frankie.

– Yeah.

Frankie tried to at least say the words ‘Thanks, Sid’, and not just thanks for the room, or thanks for being the best damn manager. Frankie yearned to be able to find the words to tell Sid how important he was in Frankie’s life. Not that any of that mattered, Sid had already hung up. It wasn’t that Frankie was unintelligent. Since retiring from boxing he had balanced a public profile with his private pursuit of a Master of Science degree in Sports Management. Nor did he mean to be curt with Sid, Frankie loved Sid. It’s just that Frankie didn’t want to be around people; that’s a feeling he had had for some time.

Frankie looked out from the terrace. The sun’s rays of dusk were slowly rescinding from the Eiffel Tower, Caesar’s Palace, Treasure Island, and the rest; giving way to the flickering, shimmering neon energy of a Vegas night awakening. Beyond the desert the now deep dark blues of shadow blanketed the mountains that were holding up a horizon of pink and orange pastels. Looking at the emerald lights that were wrapping themselves around the terrace, Frankie briefly thought about giving himself just two rounds of bourbon in some bar, but, determined to stay focused, he sipped from his water bottle, stepped back into his room, shut the door and drew the curtains.

He was alone.

Letting the full drop of plush velvet separate him from the passions playing out beyond his terrace.

Alone.

Frankie flipped open his laptop and scrolled to the top of the document. Everything to everyone: Stories of balancing the demands of elite athletic performance with celebrity. By Frankie Rosetti.

He hovered over the title and changed the font size. Again.

Then the font type.

Then removed the underline…

… and made the title bold.

Then, clicking on his name, changed the text to Francis Rosetti.

An incoming email popped up on the screen. It was from Rex, Frankie’s supervisor.

Hi Frankie, I’ve just read your ethics chapter. Of course you are using pseudonyms for your informants, but I still need to be convinced about using your data to create an entire fiction.

Frankie reread the email seven times.

He could feel his eyes getting wet.

Clasping his hands over his cheeks he read the email twice more as waves of despair enveloped him.

Alone.

Frankie knew … in one of his three suitcases he had brought … he knew he had packed them … interview transcripts that were his data … as well as hand written minutes from all of the meetings he had with his supervisor … and he clearly recalled discussing how he intended to ethically manage his data in the dissemination of his research … it was that meeting, when, after interviewing twelve high profile athletes and meticulously transcribing the interviews, Rex had criticised Frankie for arranging the data alphabetically by sport: Baseball, Basketball, Football, Hockey, Soccer.

“Where are the NASCAR drivers?” Rex had grilled Frankie, “and why are there no Olympic sports? These are omissions that are clearly gaps in your data. Where’s your own boxer colleagues? It’s all a bit basic, don’t you think”

Frankie clearly recalled leaving that meeting feeling demeaned. Like he was some kind of fraud who did not belong in graduate school. It was Sid who had offered a solution.

– Wadda ya so work’dup about, Frankie? You know I can take care o’ dis Rex if he’s bothrin’ ya. Waddas he know ‘bout sports?

Lissen, waddas it madder what sport anyone plays? Ain’t dis all about turning yasself inside out tryin’ to please everyone?

Sid had been right. Perfect even – not about the idea of taking care of Rex – but about the other stuff. So, with a new lease of energy, Frankie had rearranged his data in less than 48 hours. He had gone beyond ‘basic’ delineations based on specific sports and identified patterns in his data that he called: Personal tension; Franchise/team tension; Relationship tension; Fan tension; and Success tension. Then, with specific sports no longer an identifying label on the data, Frankie began the process of further de-identifying the data. The more he played with the data, the more readable it became. Even Sid commented.

– Dat interview stuff ya wrote, ain’t no one gonna read dat. But dis, well dis is like one of dem books ‘bout a person’s life.

Frankie found the minutes he was looking for. In a meeting with Rex where they were speaking about ethics and de-identification, another member of faculty suggested Frankie read Michael Angrosino’s Opportunity House. Frankie had done so. In fact he loved the idea so much that he had run a search to see who else had cited Angrosino. Google Scholar had returned over 2000 hits. A whole world had opened up: Laurel Richardson, Lisa Tillmann-Healy, Carolyn Ellis, Tony Adams. And then Frankie had found an entire book series dedicated to Social Fiction.

Rolling his chair back to his suitcases and opening the second one, Frankie looked over his collection of books by Norman Denzin, Michael Angrosino, Patricia Leavy, Art Bochner, and at least ten other social researchers. He clasped his hands out in front of him, then rolled his shoulders and cracked his neck.

Alone. But with a new sense of energy.

Frankie scrolled down to his chapter on managing data and began typing.

The Anxiety Inscriptions

In this post, Lain Mathers reflects on zir experiences managing anxiety and graduate study.  Lain Mathers is a doctoral student in Sociology at the University of Illinois Chicago and the Assistant Editor here at Write Where It Hurts.

It is mid-February as I begin writing this post. I am sitting in my apartment at my computer, my hands floating apprehensively above the keyboard. This is an odd sensation considering the fact that usually I type so intensely that the tiny plastic squares pop off of my laptop and onto the floor. I can feel the words I want to write just out of reach, curled up in the darker corners of my brain. I start to feel my chest tightening. “No, no not right now, please not right now,” I plead with my brain. We have a constant dialogue going, but as of late it’s taken on a significantly more dominant role in those dialogues. I’ve come to know this feeling. It’s like watching a tornado bellowing toward me while being fastened to the ground. As the tornado gets closer and closer, I eventually give in to the fact that I will be swept up in the debris of my own internal natural disaster.

At this point, generally, when I can feel a panic attack coming on, I resign to it. Over the past few months, I’ve learned just how neurological and out of my control those events are, and that trying to resist them (and largely failing to do so) leaves me feeling significantly more exhausted, disappointed, and angry than if I just allow myself to lean into them, tear apart a cardboard box or two, and then sit quietly on my couch and listen to Rilo Kiley, Neko Case, or The Yeah Yeah Yeahs in the calm after the storm.

See, I’ve known that I exhibit symptoms of Generalized Anxiety Disorder (or Generalized Anxiety Condition, as I prefer to call it, since I am working against the internalized and institutionalized stigma that the ways my brain operates means there is something inherently broken about me) for a while. I’ve had nervous ticks like compulsively picking at my skin since as early as I can remember. I can be thrown into a state of total disarray over a two-lined text message that I’m afraid someone other than the intended recipient will get a hold of. I’ve found large crowds overwhelming for a long time, and regularly get up two to three times throughout the night to make sure I’ve locked my doors (so that no one can get into my apartment) and unplugged all the kitchen appliances / blown out all the candles (so that a fire doesn’t start when I’m asleep). On my walks to school, I try to replay my morning routine to make sure I locked the doors and unplugged the appliances, and if I can’t remember I will often text message my roommate (if he is home) to make sure I did. If he is not home, it is not uncommon for me to turn around and walk back home to check (even if I am only a few blocks away from school). I have to get to the airport or train station at least three hours before my trips out of town because I am constantly terrified that some catastrophic event will happen that prevents me from getting where I’m supposed to be, and I am known to check the pockets in my jacket up to 15 times before leaving my house, sometimes one right after the other, to make sure I haven’t accidentally lost my wallet, keys, or cigarettes.

All of these are symptoms I’ve learned to manage over the years. For example, I just plan my travel accordingly; I allow an extra 30-45 minutes before I go to bed to check the locks and plugs. I say out loud to myself that I locked my door as I leave my house in the morning so when I run over my morning routine repeatedly on my way to school, my own verbal affirmation to myself will be part of that narrative. And, historically, when I would get the occasional panic attack (every couple of weeks or months), I would allow myself to just experience them and make sure to try to get as much sleep as possible and drink lots of water.

Writing has also been a huge part of my anxiety management. For the past 14 years, I have been writing regularly in a journal. Presently, I am in my 94th book, and have no plans of stopping any time soon. Since I was old enough to hold a pen writing has been the place where I can document the conversations I am constantly having with my brain about all of the things I need to be worrying about or else something terrible will happen. Putting them down on paper both makes them feel real and also like something I don’t have to carry around in my head anymore (it can get quite crowded in there). Writing is the place I go during panic attacks when nothing makes sense and I can’t even really form complete sentences, yet something about the feeling of pen on paper keeps me anchored to this world. Writing is, without a doubt, my most significant and important survival strategy when it comes to my mental health.

So what do I do when I can’t write through the anxiety? For those of us that find a deep comfort in writing, the inability to do it is incredibly destabilizing and painful. Recently, I had to confront this question in a wholly unsettling manner.

For people who live with chronic mental health conditions and/or trauma, we know that triggers can pop up and derail our routines for hours, days, weeks, even months. We also know that triggers can come in the most unexpected contexts and magnitudes. So, just because one is perhaps prepared to handle a situation that has previously triggered them doesn’t mean they’ll be able to negotiate a totally new trigger with as much familiarity.

So, when my understanding of my life was recently upset by conditions entirely outside of my control, and unlike any trigger I’ve previously experienced, I began having panic attacks on a daily basis. Not only did they start occurring more frequently, but also at unexpected times compared to when they’ve previously boiled to the surface. By this point, though, I had convinced myself that writing was all I needed to settle the rush of chemicals in my brain. “Just write it out, Lain, you’ve done this hundreds of times before.” Yet when I sat down to put the chaotic words on paper nothing flowed. I was in a state of mental and emotional quicksand, sinking faster than I could get my words to secure me to this world.

This was even more unsettling because writing is not something I just do for personal pleasure or comfort anymore, it is part of my livelihood. I began to tell myself elaborate stories about how I will never be able to write again and my career as a sociologist is doomed to failure. I walked nervously around my apartment, screamed into pillows, ripped apart cardboard boxes, and smoked countless cigarettes to try and dilute the quicksand feeling but nothing worked. It was in this moment that my brain and I began to have a serious conversation and one unlike any talk we’ve had before.

“Maybe you should talk to someone, Lain. Maybe you really need that.”

“No, brain, I can manage this. You’re just really fucking with me right now. It’ll pass.”

“Will it?”

“It has to.”

“How do you know? Maybe you’re just like this forever. Maybe I’ll never stop.”

“Maybe I should talk to someone.”

“Should you, though? How do you know it will help anything?”

“I don’t.”

Before making an appointment with a therapist, I held my journal and a pen in my hand, so desperately hopeful that I would have some kind of breakthrough by just acknowledging that my mental condition is real, that this experience is out of my control (despite how much control I like to believe I have over it). Nothing. So, I made the appointment and had a flurry of panic shortly after doing so.

Over the past few months, I’ve started more openly acknowledging that I not only live with generalized anxiety everyday, but also that it profoundly influences my life in ways I never expected it would. I am continually learning that maintaining anxiety management strategies, such as writing, is one important component in a large equation of other management mechanisms, such as (for me) therapy, medication, painting, supportive friends and loved ones, and plenty of alone time. I am still learning to overcome the stigma associated with chronic mental health conditions (especially one like anxiety, that many people don’t believe to be real), and the path to figuring all of this out certainly defies the American ideal of a linear progress narrative.

Yet, here I am, in late March, sitting at a café finishing this essay that you are presently reading to the sound of Rilo Kiley’s song, “A Better Son or Daughter” and occasionally picking up the “I” and the “O” keys off the floor. The routine of bending over every seven or so minutes to fetch the tiny, plastic, lettered squares off the ground is a welcome reminder that I am still here, anxiety and all.

“Hope” Springs Forth: New Article Out in Sociology of Health and Illness!

In this post, Xan Nowakowski reflects on a recent publication in Sociology of Health and Illness concerning the personal, political, and structural experience of managing chronic conditions in everyday life.

Hello readers! If you’ve been following WWIH for a while, or just know any of us editors outside of the blog, you may have heard a bit about my new article in Sociology of Health and Illness. It’s a critical analysis of my experiences with a prescription drug that has excellent benefits and a lot of potential side effects, and the many sociological lessons learned from trying to find the right balance between the two.

A lot of the illness management literature deconstructs major changes in health status, and the impacts of these events on identity formation and performance. This literature doesn’t yet contain as diverse an array of information and analysis on the day-to-day nuances of living with chronic conditions. I’m hoping to inspire other scholars to delve more into that area, and to do so with a richly intersectional perspective on relationships between health and social life.

To have this article published in Sociology of Health and Illness is a dream come true, and the product of about two years’ worth of work. So I’m thrilled to report that “Hope Is a Four-Letter Word: Riding the Emotional Rollercoaster of Illness Management” is now available online, along with an accompanying video abstract introducing the piece. The print version of the article will appear later this year. In the meantime, if you want to read the article and are having trouble getting access to the online version, just drop me an email.

I also encourage everyone to share the link to the online version with others who may be interested in this topic. I quite deliberately constructed this article as a narrative with theoretical commentary, not a research methods piece. It’s accessible for a wide variety of audiences, not just academics. I wrote the paper with patients, families, clinicians, advocates, and caregivers all well in mind. WWIH readers will recognize a lot of our key themes here: intersectionality of multiple social positions and roles, gender performances and violations of norms, racial and ethnic inequality, symbolic interactionism as a tool for understanding health experience, and of course a hefty dose of storytelling!

An essential contribution of this piece is detailed insight into the interplay between personality and social structure in the experience of chronic illness and the management thereof. By using my own voice to explore the complexities of different theories of social inequality, I hope to help build new ground for dialogue about what chronic illness feels like day-to-day that can inspire improvements in both community support and clinical care. I also hope to open doors for other scholars who occupy one or more marginalized social locations to share and critically analyze their own stories of illness management in everyday life.

On not Writing

Erika Gisela Abad has a Ph.D. in American Studies, and works at Center for Puerto Rican Studies investigating intersectionality, cultural experience, and oral history among Puerto Rican communities and families.  In this post, Erika reflects on how her research in Puerto Rican Chicago sparks tension and memory in dialogues and debates with her mother.  

I struggle with not writing. Sitting with my mom after a long day’s work watching ridiculous TV shows on streaming media. I do this in the midst of professional uncertainty when my conscious tells me it is important to, well, send out applications. A woman struggling with the invisibility of her work, of her motherhood, closing the computer allows me to make her visible in the mundanity of the everyday to which we’ve arrived.

A mixed class Latina the second to finish college, the first PhD, I got this degree because making a living as a writer a mentor once told me, was going to be difficult. In the place many predicted the MFA would land me, I sit with my mom because of the reasons I write:

To heal, to release anger, to get to truths neither speaking nor working reveal. Drafting and talking through to forgive what moments trauma doesn’t want to let go. As I once wrote a mentor, it’s about getting to the table and trying to write what the other person coming to the table could or would look like. It’s about practicing with characters and metaphors how to listen through the trauma, whether the trauma be colonial, patriarchal or material – whether the trauma be that which has been named or that which must be kept invisible. Sometimes the struggle to survive demands struggles be kept silent. Human suffering, as inevitable as it is, often gets lost in the pursuit of fantasy as well as forgetting. Coming to the table is also about assessing whether the wheel turning revolution can be rebuilt or if the pieces of memory missing – memory missing because of what can’t yet be named – requires so many of us to rebuild it.

And sitting with my mom is about waiting, waiting for memory to reappear. And her memories awaken in the memories of others I record as an oral historian. Memories of parking lots turned into playgrounds, memories of late buses to colleges she never imagined. Memories of drinking Dr. Pepper for the first time, her comfort food, the comfort of being able to know more, taste more than poverty and patriarchy permitted to a young woman growing up where Puerto Ricans were trying to make place. These memories give her life beyond the college she never finished for no other reason than being by herself. Her stories lifting up from computer screens in a voice still weary of helping and reaching, come to life beyond the place of making meaning of leaving that requires returning, overwhelmed by isolation.

And I sit with that, when our skin color differences do not write away the sameness of racism we experience. A paleness that encourages forgetting that my brownness writes on the page, for the stage in ways that have her admit—not to me—that the fight continues. Responses to racism are coded in the traumas we share. Retorts and resistance colored by the adverse childhood experiences that divide us. Sitting is all she wants at the end of the day, at the end of days running, at the end of years climbing to find stable ground in which to root, in which to lift me, among her other children higher. My hands race and wring, legs twitch because work, all the kinds, exige movement.

And I struggle to not write in those moments: moments where the cogs in my head turn too fast for her to keep up; when the questions she asks receive huffs and stomps out looking for roads bigger than the rooms we occupy. In those moments where the grumbles she makes about the car driver who works when she doesn’t, because the car that is freedom to her and is more work to me in ways that put her back on the bus, on the train to move because her fixed time challenges the time that, for me, remains in constant question. The need for work fuels us in speeds and codes the other doesn’t understand.

It takes seconds to remember a woman speaking of a girl ashamed and strained by the laundry she carries on the bus. And I see my mom there, then, aching and taking days off to not have to, again cross the street with bags and baskets. She bought to own to never again walk or rent or borrow. She works to have the luxury, luxuries she couldn’t have back then, then when Puerto Ricans were beginning to make meaning, Puerto Ricans who form the history I collect. Her life fills up in the margins of those stories, of those whose mark on Puerto Rican Chicago get printed in newspapers, shine in their awards, appear on screens to see. Those Puerto Ricans now, in between arguments and questions, spark her to remember her story. Histories she lived differently, differently for reasons the more I learn from others, the more she reveals.

So I stretch and listen and sit still, waiting, waiting till she’s asleep to pull out the books, to open the pc, to take out the pen and paper to write. Because writing is still needed to heal, to move, to forgive, to let go, to uncover, to remember. But not writing—not writing in those moments I steal from reason, from economy—allows me to say thank you, thank you the only way a struggling writer knows how. By counting the wrinkles in her face, the sighs in her stories, knowing that, in between them, remain moments and movements to keep me writing.

Tag, You’re Ill: My Decision to Wear a Medical Alert Bracelet

In this week’s post, Xan reflects on medical sign equipment and the self through the example of decision-making regarding medical alert bracelets.

I started my year in South Tampa with a dead car battery, a small moment of panic, and a series of tough realizations about my health and life. Turning 32 during the winter break made me reflect on how far I have come with my physical and mental health, and my ability to engage in effective illness management in all of those areas. I have never felt happier to grow older or to continue to challenge myself with new goals for well living, both within and outside of my professional life. At this point in my journey, giving myself those challenges means really moving out of my comfort zone and daring to dismantle some of the boundaries I previously erected in order to feel like I belong.

A curious artifact of my illness experience on which I’ve increasingly focused attention via critical autoethnography research is my staunch refusal to use any devices that obviously signal to others that I am ill.   Despite multiple loved ones and colleagues persistently reminding me that I might enjoy much better comfort in meeting spaces and at community events were I to carry a “donut pillow” to pad my sit bones on hard seating surfaces, I still find the prospect incredibly unpleasant. Reflecting on my reactions to this very intelligent suggestion always brings me to the same conclusion: Although I have built my entire career on using my own experiences of chronic illness to conduct impactful research and outreach on same, doing that kind of work also means that I mostly control the narrative of my disease.

By contrast, using a medical device—however simple or subtle—gives others very prominent evidence that I have a chronic condition, and allows them to form a wide variety of conclusions about my diagnosis and what my life is like. I suppose I have not really changed that much in some ways, because even though I accepted long ago that my own agency is merely a component of the complex social fabric in which I spend my days, I still feel the urge to control as many things in my environment as I can. The idea that I might not get a chance to shape how others interpret my illness still does not sit well with me.

Of course, this notion is problematic in and of itself. Being an 85-pound adult does invite people to draw all sorts of conclusions about what I live with, some reasonably accurate and some remarkably off-base. For instance, in community settings I have sometimes been mistaken for a methamphetamine or heroin user. These situations are likewise uncomfortable, and perhaps drive me to control what elements of the narrative I still can. Perhaps for this reason more than anything else, I have never worn a medical alert bracelet despite having a heart condition as a result of my autoimmune disease. When my potassium levels dip lower than usual, a bit of excitement or panic can make the Q and T waves of my heartbeat spread so far apart that my heart actually stops for a split second.

Long QT syndrome is a tough condition to miss if you know what to look for. Just look for the person who randomly passes out with seemingly no rhyme or reason, only to wake up fully alert moments later. It’s common in people with a history of severe hypokalemia, which often owes to chronic diseases of the mucous membranes and/or kidneys. My own disease is very similar to cystic fibrosis and may in fact be a rare form of CF—genetic tests remain inconclusive. So my whole GI tract is affected, as are my kidneys to some degree.

As a result, my body requires large amounts of supplemental potassium to sustain itself and keep my heart functioning. I’m also hypotensive thanks to a family history of low blood pressure, which doesn’t help matters. Neither does the thiamine deficiency I’ve become vulnerable to because of all the scarring on my small intestine, which in turn can exacerbate heart problems. So I pass out sometimes—when I’m excited, when I’m panicked, when I’m dehydrated, when I’m fighting a virus… I collapse and hit the deck, then wake up a few seconds later, usually with several very confused people surrounding me.

So far, I’ve been lucky. I’ve never lost consciousness for that long—maybe 60 seconds during the worst episode I’ve had to date, where I collapsed at the entrance to a busy store. I’ve never passed out in a place where I would have been in danger physically. I’ve fainted in showers and living rooms, in quiet parking lots and in my partner’s arms. I’ve never gotten a concussion, never broken bones from the fall. When the fluttering starts in my chest and I start to feel my body lifting off from the ground, as if I will finally fly away from the pain it has caused me, I know what’s coming and I let it happen. I just crumple like a marionette with slack strings, folding gently to the ground. I relax and keep my body loose to minimize my chances of getting seriously hurt.

I also try to calm myself during moments of panic so things do not progress to that point—a lofty challenge when I am still figuring out how to live well with PTSD, but one I conquer more and more with each passing day. And when I invariably wake again, still in the same body with all its same foibles, I try to make light of things and share a laugh with anyone who has come to help. But it isn’t really funny, and on the few occasions this has happened in recent months, I have increasingly felt that the joke may be on me. I reflected on all of this as I lay on the pavement outside our apartment in Palma Ceia, cold sweat on my brow and heart fluttering beneath my ribs. My partner stood above me, hand on phone in case this would be the one time where I did need an ambulance. I blinked, vision coming back into focus, looking up at my partner with a sheepish expression.

I should probably get a medical alert bracelet, shouldn’t I. My partner looks down at me, arms crossed, eyebrows raised. Uh-huh. I accept help getting up, which represents substantial progress in and of itself. This is gonna be an adjustment, I say. I don’t usually wear anything that would tell people I’m sick. I know it’s kind of obvious but I have this illusion that I control the message all the time. And this makes it obvious in a really big way. I guess I’m just gonna have to be okay with it. I want to be around for a long time and that’s not going to happen if some well-meaning paramedic shoots me up with adrenaline because they think I’m a drug user who has overdosed. My partner relaxes and listens, satisfied that my usual mile-a-minute sharing of my thoughts means I’m doing all right.

I let my partner find me an auto parts store nearby that will replace the battery and send me on my way back north to get started with spring semester teaching. We watch through the store windows as the old battery comes out and the new one goes in, me talking endlessly about the significance of deciding to order a medical alert bracelet. I talk about what I’ll engrave on the back. I already know I’m going to get one with rear engraving—my compromise with myself about discretion and narrative control. I think about my bracelet the whole drive home: what it will say, what it will look like, how I will wear it. I think about getting a wallet card to hold all the other information I cannot possibly fit on a bracelet that might be of use to first responders.

I think about how I’m going to talk to my parents about all of this. They know I have “a little long QT”, as they like to put it. But they don’t really know that it still flares up sometimes, even with my potassium and thiamine levels managed with supplements. I debate just not saying anything, to them or my colleagues or anyone else. And then somewhere between Tampa and Tallahassee I decide that I’m just beyond sick of hiding, of erecting these arbitrary boundaries in a life where my illness is already common knowledge because I think somehow they will protect me, allow me to keep control of a body that has been killing me since the day I joined this world. Perhaps I’ve finally realized that if I behave like a prisoner of my body, I become one. Controlling the narrative doesn’t give me the kind of freedom that I once thought it might. I suppose I’m beginning to feel okay with just how much I cannot control in this body, in this life.

Back at home, I spend hours researching different bracelet options, settling on a professionally engraved tag for which I can make my own bands. I’ve always loved bracelets—a signature part of my aesthetic for years—and figured that would be a good way to make the experience less intimidating. It is a whole new world of scary, even if you’ve been very open about your illness for many years as I have and even if you have made it a huge focus in your career, to put it right there on your arm for anyone and everyone to see. A “scarlet A” of sorts, a piece of sign equipment branding you as different. I thought about this as I deliberately chose a tag design with a black caduceus symbol. Then I spent several hours mulling over the engraving content—making notes, stepping away, coming back to it, revising. If I was going to put the core of my life on my wrist to speak for me at times when I could not speak for myself, I was not going to take the process lightly.

My medical alert tag arrives in the mail a couple weeks later, and I make a simple band for it with supplies purchased from a craft store. I begin wearing it the next morning. The tag is a simple steel oval with a black caduceus symbol on the front side, and on the back several lines of engraving:

 

AUTOIMMUNE DISEASE

LONG QT & HYPOTENSION

MULTIPLE MEDICATIONS

INFO ON WALLET CARD

J (SPOUSE): XXX-XXX-XXXX

 

I’ve accepted that this is something I need to do to live the best life I can. I’ve made every effort to ensure that I will be happy to wear the tag every day, customizing the band exactly to my liking, ensuring that I’ll have no excuses to leave it behind in a drawer. I’ve also accepted that I still have the freedom and agency to tell people who I am, both within the context of my chronic illness and outside of it. I won’t become a walking stereotype just because I wear a medical alert tag. I’m still me, which entails living with a chronic condition but hardly ends there.

I also have peace of mind from knowing that something so small and simple can advocate for me when I cannot speak up for myself. So do my parents, who nod sagely and say I’m making a smart choice when I tell them I’ve decided to start wearing an alert bracelet. So does my partner, who quietly breathes a sigh of relief over the phone when I say I’ve ordered the tag. I’m not usually much for New Year’s resolutions, but I feel good about making and fulfilling this one. Since the tag arrived, I’ve worn it proudly—hanging a lantern on it, using it in my teaching and community outreach, the same way I’ve done with so many other elements of my illness experience. It’s just one more way of writing where it hurts.

What’s in a Name: On Bi and Pan Sexualities

A few weeks ago, I posted two pieces on Conditionally Accepted (see here and here) and one here on Write Where It Hurts exploring bisexuality in varied contexts and defined in varied ways. At the same time, Lain Mathers posted a piece here on Write Where It Hurts examining the ways these meanings and conflicts around bisexuality play out in lesbian/gay and heterosexual spaces. In this post, I want to reflect upon a question that regularly emerged in response to these posts – the relationship between bisexuality and pansexuality.

As I noted in the midst of some of the productive conversations that emerged in comment threads, the term pansexuality or pansexual (like bisexual, bisexuality and other fluid identity terms) is often rife with conflict. In my experience, this conflict arises as a result of the use of the term in three distinct ways by varied individuals and groups.

Before discussing these uses and the conflicts they contain, however, a little her-his-our-story may be useful. Initially, pansexuality was not coined as an identity term (i.e., like bi, homo, and hetero sexualities), but rather as a statement (often attributed to Freud and others at the time) on the presumed innate sexual desire of all humans. This elaboration is automatically problematic because it erases asexual existence and experience, but thankfully, this is not how the term is generally used at present. Rather, these days pansexuality is generally used as a form of sexual identification that dates back (at least) 3 or 4 decades. In this elaboration, it was initially established as a type or form of bisexuality wherein the person in question did not factor genital possession in the establishment of sexual desire and practice. In fact, many bisexual people I have known (myself included) use this term interchangeably with bisexual, fluid, and Queer among others to denote experience and identification with this end (i.e., lack of concern for genitals in matters of attraction and / or sexual activity and / or romance) of the bisexual spectrum (i.e., I may say I’m bi, pan, fluid, and Queer within a few breaths of the same conversation since for me (and historically) this is like saying I like guitars, fender guitars, electric guitars, acoustic guitars, and bass guitars = I like guitars and here are certain types of guitars that especially fit my needs).

When this identification practice emerged, bisexuality (even in general use) typically referred to those people attracted to their own body and / or genital type and the bodies and genital types of others who were not the same as their own (i.e., these were people who engaged in both homo and hetero sexualities, therefore bisexual). Within this umbrella definition, some bisexuals were (1) attracted to more than one type of genital set or sex, some bisexuals were (2) attracted to more than one type of physical form (i.e., size, shape, race, sex, gender presentation, etc), some bisexuals (like me) were (3) attracted to all types of bodies (i.e., like mine and not like mine) whether or not they looked like their own body type, and some bisexuals (4) fluctuated along varied points of this spectrum throughout their lives. Within this spectrum of possibilities between self (1) and other (2) body types (i.e., bisexuality) and between homo (1) and hetero (2) sexualities, pansexual referred to the third type noted above (as did ambisexual, polysexual, and other terms).

In fact, this spectrum still finds voice within bisexual communities and umbrella designations, and remains the most common definition of bisexuality I have seen among bisexual identified people. Other terms, such as fluid (noted as number 4 above), have even been established to make sense of bisexual people’s locations within this spectrum / umbrella. However, the last few decades witnessed systematic erasure and marginalization of bisexuality within lesbian/gay and heterosexual communities predicated upon transforming the word “bi” from an expression of two ends of a complex spectrum of human engagement and desire preference into a simplified binary articulation of the male/female genital binary homo and hetero sex norms are built upon. Instead of bisexual referring to both homo and hetero sexualities, people began linking it to sex / gender binaries to essentialize homo and hetero sexuality. To put this into perspective, imagine if we began saying homo and hetero sexual meant one sex only instead of preferences for a type of sexual engagement – you would have the same thing that has been done to bisexuality over the past few decades, and it would likely sound as silly to homo and hetero sexual folks as it does to most bisexual folks aware of this history. In the process of this extermination of bisexual complexity in the hetero-homo imagination, some people (not surprisingly) began to identify as pansexual in order to avoid biphobia and monosexism within lesbian/gay/straight communities.

It is within this context that (at least) three uses of pansexuality have emerged as regular components of normative or mainstream sexual politics. In the first case, people adopt a more traditional interpretation of pansexuality as a type of bisexuality that refers to sexual attraction and / or engagement regardless of genital consideration. In such cases, pansexuals stand along side other bisexual people against monosexism and biphobia (and in many cases hetero and cis sexism), sometimes refer to themselves as bi-pansexuals or pan-bisexuals though just as often simply say they are pansexual and / or bisexual (or any other terms within the bi spectrum) in varied contexts and with varied others, and often find comfort and security in larger bi communities while working to provide the same for other bi people in lesbian/gay/straight communities. In such cases, pansexuality is not problematic at all – it is simply someone exercising their self and bodily autonomy to identity in the way that best fits their experiences and desires. They are harming no one, and often, as members of larger bi communities, helping others. In such cases, their identification efforts are similar to working class people who prefer homosexual or heterosexual when identifying themselves, but do not have issues with or fight against middle class people who prefer to use the terms gay or lesbian or straight to identify themselves – they are merely identifying as they see fit within a larger umbrella of binary sexual (homo and / or hetero) others who they support and embrace.

The second most common way I see pansexuality used, however, is deeply problematic. In this case, people identify as pansexual to distance themselves from bisexual communities and avoid the marginalization of these communities within lesbian/gay/straight (i.e., binary sexual) communities. In such cases, these people will call themselves pansexual in a positive way, but then repeat biphobic notions of binary bisexualities used to marginalize bisexuality (however termed) within gay/lesbian/straight spaces. In so doing, they will generally receive affirmation and better treatment from binary sexual communities (lesbian/gay or straight identified) in exchange for supporting monosexism (i.e., sexual binaries) – a process referred to as trading power for patronage in inequality studies (i.e., the process wherein a subordinate accepts subordination on certain terms to gain a more comfortable location within a given matrix of inequality). In such cases, pansexuality is incredibly problematic because it is used as a form of sexual inequality reproduction that further marginalizes other forms of bisexuality and non-binary existence. In such cases, pansexual identification efforts are similar to some working class people who prefer homosexual or heterosexual to identify themselves, and then say those using the terms like gay or lesbian or straight are misguided or wrong or not “really” authentic and / or middle class and above people who prefer the terms like gay and lesbian and straight, and then say those using homosexual or other terms are misguided or wrong or automatically hurting them or not “really” authentic – they are using their own preferred terminology as a mechanism for demonizing people who prefer other terms for describing similar (in many cases the exact same) sexual desires and identities.

Within the aforementioned uses of pansexuality, there lies another common use that actually demonstrates the importance of the first two patterns. In this case, people grow up in spaces and communities devoid of bisexual our-his-her-story and understanding, and as a result, learn binary sexual (lesbian/gay/straight) perspectives of the world only. In such cases, they are taught horror stories and insults and jokes about bisexuality that reproduce monosexism and biphobia, and then adopt pansexuality as a term for themselves because they don’t look like or want to be like the negative depictions they are taught by those who benefit from monosexism. In such cases, they rarely know that pansexuality emerged as a form of bisexual identification, or the patterns of ongoing bi-erasure, marginalization, and just plain fear embedded within many contemporary binary sexual (lesbian/gay and straight) communities. Without access to this backstory, they simply identify in the way that appears “acceptable” to the people around them and embrace the biphobia promoted in the same circles. In such cases, pansexuality is once again problematic for the same reasons noted above, but it is nuanced because some of these people will change their behaviors and / or identities and / or politics when they meet bisexual communities, learn about bi-pan-Queer-fluid backstories, and / or continue to encounter marginalization (though often in a more polite form) within lesbian/gay/straight circles due to their non-binary sexual desires and practices. Others, however, will have grown accustomed to the comfort achieved by contributing to bi oppression, and thus slide into pattern two noted above over time. Finally, still more may never become acquainted with bi-pan-Queer-fluid backstories, perspectives, and / or communities, and remain ignorant of these dynamics or the ways their own self presentation and politics speak to these long term patterns. In such cases, pansexual identification efforts are similar to people who only grow up hearing heterosexual perspectives on the world, and internalize these depictions of dangerous or scary gay/lesbian/homosexual people and wrestle with these depictions whether or not they ever encounter gay/lesbian/homosexual backstories, perspectives, or communities in their own lives – they adopt terminology (i.e., I do this, but I’m not gay/lesbian/homosexual/bisexual/pansexual/etc) due to the fear, guilt and shame they were taught by others seeking to preserve their own position within binary sexual politics and power structures.

With these patterns in mind, I return to the conflicted positions of contemporary pansexual identification. As suggested in my use of gay/lesbian/homosexual conflicts I’ve observed over the years, the use of pansexuality as an identification term is complicated, nuanced, and not a new issue for sexual minority communities (i.e., one only needs to look back at previous conflicts between homophile and gay identifications or conflicts over lesbian and gay woman to see the exact same patterns play out in binary sexual minority (i.e., lesbian/gay) communities in the past). As a result, I tend to interpret these conflicts in much the same way I do in relation to the gay/lesbian/homosexual conflicts noted above.  As Queer scholars have long suggested, I focus on the actions tied to the label instead of obsessing over whether or not someone identifies in a “specific” way (i.e., I focus on sexual justice instead of identity politics).

As such, if someone identifies as pansexual while embracing and working for other types of bisexual people, then I see no problem, welcome them to the club, and stand beside them in any way I can. This is the same way I approach bisexual, lesbian/gay, heterosexual, or asexual people – if they identify as their chosen term while embracing equality for all beings of varied sexual identifications and working for such equality, I want to support them in all ways I can.

If, on the other hand, someone identifies as pansexual while demonizing and working against (intentionally or otherwise) other types of bisexual people, then I see a problem, oppose them in any way I can, and call them out on their biphobia, monosexism, and / or heterosexism. This is the same way I approach bisexual, lesbian/gay, heterosexual or asexual people – if they identify as their chosen term while demonizing other beings of one or more sexual identifications and working against such people, they are facilitators the pain of many other people, and I oppose them in all the ways I can.

I take a similar approach – no matter someone’s sexual identification – in relation to cissexism, racism, sexism, ablism, classism, colorism, nationalism, religious oppression (maybe religism?), and other forms of inequality. If the person in question is working to oppose these systems that cause so many people so much pain, then I stand with them whether our identities match or not and / or whether or not I agree with their chosen identification terms, but if they (intentionally or otherwise) feed these systems I stand against them, do my best to call them out, monitor myself to make sure I don’t slip into such practice or catch any practices like this in my own activities I’m not aware of yet, and otherwise seek to end (in any way I can with my one life) these systems and their power.

As a result, my ultimate suggestion in regards to differential sexual identification terms is to focus on equality and justice for all beings regardless of sexual identification. Do you identify and act in ways that support the equality of others? Do you identify and act against monosexism, heterosexism, biphobia, homophobia, and other forms of sexual violence and marginalization? Do you identify and act in ways that support the right of other people to exercise autonomy in self identification and activity even when such autonomy leads them to prefer different identifications and practices than your own? Do you identify and act in ways that support consent, bodily autonomy for all, sexual freedom for all, and the dignity and respect of all people who embrace and support these ideals? For me, these are the important questions regardless of the term one prefers to use to describe their own sexual practices and desires.

J. Sumerau

What should I do when I’m walking behind or passing a white woman late at night on the street?

In this guest post, David Springer reflects on navigating race and gender intersections in public spaces as a black man and a feminist committed to pursuing racial and gender equality.  David Springer is a doctoral student in sociology at the University of Illinois Chicago, this is his first blog.  

Ever since I started talking to women about street harassment, I’ve tried to be more conscious of my presence as a man in settings where women are often made to feel unsafe. I have become especially conscious of this dynamic when I’m walking around or behind women late at night. A friend of mine once suggested that he crosses the street in these types of situations to avoid making the woman feel uncomfortable (he was Latino). I’ve done this a handful of times since then and will continue to do so, provided I’m not thrown too far off my original route.

But I still have some mixed feelings about this suggestion. For a while now, moments like these have exposed a rift in my mind. On one side of this rift is my militant/anti-racist/black nationalist self. This is the side of me committed to racial justice for all people of color, and especially for black men. It’s the side of me that’s been cultivated since I sat and watched Spike Lee’s Malcolm X with my family when I was 6 or 7 years old. On the other side of the rift is an intersectional feminist attempting to use their position of (male) privilege as a megaphone to help spread the voices of women who are harmed by sexism and misogyny on a daily basis. These overlapping but distinct parts of my consciousness crash into one another whenever a woman reacts fearfully to my presence.

An example of this came one night when I was in college. A group of friends and I – all African-American – were heading back to our dorms after dinner at the dining hall. As we were walking, an Asian woman walked briskly out of another building in front of us with her head down. At first, I wasn’t sure if she was simply lost in thought, or if she was nervous about our presence. I got my answer when one of my friends politely asked “How you doin’?” She jumped as if she had heard gunshots, and walked away from us even faster.

We laughed at the incident. By this point in our lives, we’d come to expect people to be afraid of us, even on the campus we called home for four years. One of my first nights at college, some friends and I headed to a gas station across the street from our dorms for a late-night snack. As one of my friends – a 6’4″, dark-skinned black man – reached for the door handle, an older white woman rushed to the door, locked it, and shook her head “No,” signaling that either they were closed or that she didn’t want us in her store. We laughed then, too.

The militant black side of me views these kinds of incidents as blatant acts of racism. What else could they be? Black men in America are among the most criminalized in the world. Black men are 6 times more likely to be incarcerated than white men, and make up a disproportionate number of those who are stopped, searched, arrested, and jailed for drug-related offenses, despite studies suggesting that they use and sell drugs at rates remarkably similar to whites. Black men have long been assumed to be criminals or inherently threatening to our society, and are often profiled as such. Throughout history, we’ve often been assumed to be particularly threatening to white (and other non-black) women. Many lynchings in the American South and elsewhere took place after allegations that a black man had “improper relations” with a white woman. This often included criminal acts like rape or harassment, but even sleeping with or flirting with a white woman was sometimes grounds for death.

Today, we – as black men – often find ourselves being shunned and avoided by those who assume that we pose some sort of threat to them. This is especially the case for those of us who must navigate predominantly white/non-black spaces. When a woman crosses the street to avoid us, walks faster as we approach, or rushes to lock their door as we pass by, it reminds us that we’re often viewed as a threat to both society in general and to women in particular, even if we’re middle class, college-educated professionals.

So, should I cross the street when a woman walks past me late at night? My militant side says “No!” After all, I already spend too much time as it is managing the emotions of whites around me to make sure they’re comfortable. For example, black professors around the country must often manage the emotions of whites in the classroom when we discuss issues of white privilege and racism. We must navigate and manage the expectations of whites in college settings, at work, in our neighborhoods, in restaurants and in movie theaters. The stress this causes – known as “racial battle fatigue” – is highly associated with negative health outcomes. In other words, constantly dealing with racism in different settings is literally detrimental to our health. Given how much of a burden this places on the shoulders of black men, I reject the idea that I should have to cross the street to accommodate women’s aversion to black men.

Right?

But the feminist in me sees these events a little differently. A substantial amount of the violence and harassment that women face comes at the hand of boys and men of all races. I like to think of myself as a “nice guy,” despite the fact that many men on the Internet have given the term a bad name. But whether I’m the nicest, most feminist guy on the planet or a misogynistic serial killer – I must ask how any random woman on the street will know that? Many simply see a man. Moreover, domestic violence, sexual assault, street harassment and other forms of violence against women are at chronic levels in our society. You’d be hard pressed to find a woman in this country who hasn’t been verbally or physically abused, harassed, or sexually assaulted by a man somewhere, regardless of race, class, or sexuality. It’s not just black men who do things like this, despite what some may imply. ALL kinds of men harass women, and in those moments, women can’t be sure whether or not I’m one of those men.

Most of the women I’ve talked to have experienced verbal harassment, unwanted touching, or been outright assaulted by men. As feminists have brought attention to this issue over the years, I’ve come to re-evaluate some of my interactions on the street with women.

The woman who jumped as my friend greeted her? Maybe she had recently been harassed or assaulted by men like us. Or maybe she was being racist. Maybe both. I’m less inclined to give the store clerk the benefit of a doubt, as she very well could have just told us they had closed for the night. Store clerk jerks aside, men do pose a substantial threat to women in a variety of ways, and it’s important for us to do what we can to help women feel the same level of comfort that we do when we’re in most public spaces.

So, when a woman – white, black, Asian or otherwise – crosses the street to avoid me, avoids eye contact, or simply tenses up around me, I should acknowledge that she’s doing so as a form of self-preservation. I can empathize with that, as I react the same way when I encounter police officers or security guards. Whatever the circumstances, conversations around street harassment and violence against women aren’t about me, per se, or even about men as a whole. After all, many men aren’t abusers or rapists. But that fact doesn’t help women feel any safer, just as I don’t feel safer around unfamiliar police officers knowing that there are “good cops” out there. Women’s actions in these instances are reactions a perpetual pattern of harassment by men, black or otherwise. Put another way, #notallmen are harassers, rapists, or abusers, but #yesallwomen have experienced these different forms of violence at the hands of men.

So, which side of me is right? The Black Nationalist in me has a point – I shouldn’t have to tap-dance around other’s people’s racism just to make them feel comfortable. And I have a right to exist in public spaces without being criminalized. But as a black man, I also understand what’s it’s like to feel as though you are putting yourself in danger simply for existing in public. The stories of Trayvon Martin, Emmett Till and countless other black men remind us that we’re often one bad interaction or misunderstanding away from violence or death. Women experience something similar on a day-to-day basis.

Of course, none of this is to suggest that women and black men should play “Oppression Olympics” when it comes to this subject, or to erase the nuanced ways in which black men and women experience violence in public spaces at the hands of police officers or even one another. And it certainly isn’t to suggest that all women experience violence and brutality in the same ways. Rather, it is to highlight one of the conundrums of trying to support women as they fight back against violence and street harassment while also trying to counter violence against black men.

I know that street harassment isn’t okay, but it’s also not okay to assume a man is dangerous because he’s black. Black men are by no means the only group that engages in this kind of reprehensible behavior, but that fact shouldn’t be used to dismiss the experiences of women across the world.

So, what’s the answer? What should I do when I’m walking behind or passing a woman late at night on the street?

I still have no idea.

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