Tag Archives: Xan Nowakowski

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

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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.

Incorporating Underrepresented Populations in Teaching and Research

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In this post, the Write Where It Hurts editorial team reflects on their experience advocating strategies for teaching to and about marginalized populations often left out of mainstream educational materials, research protocols, and data sets (see our recently published Teaching Sociology article on this topic here) in hopes of facilitating dialogue about the incorporation of marginalized and otherwise underrepresented populations in teaching and research.

As people who belong to, write about, teach, study, and engage in advocacy related to varied populations marginalized or otherwise often left out of mainstream education and scholarship (i.e., donor conceived people, adopted people, transgender and non-binary people, people managing chronic physical and / or mental atypical experiences, etc.), we have become intimately aware of the limitations or missing elements within much existing scientific data and educational resources. At the same time, we know all too well the structural and ideological barriers that slow alteration and revision of existing educational rituals, traditions, and structural patterns in concrete settings. As we did in our recently published Teaching Sociology article focused on strategies for inclusive teaching about gender via the use of survey data that often does not explicitly measure the gender diversity of our shared world, we would like to encourage our colleagues to consider strategies for overcoming existing structural and ideological traditions in hopes of continuing dialogue about methods for creating greater diversity and inclusivity within and beyond scholarly and educational materials.

As we note in our recent article, many data sets called “representative” and used to make far-reaching claims often do not contain and / or do not explicitly measure people like us. If, for example, Xan seeks to learn about social patterns related to donor conceived or agender people, such data sets offer no answers despite the use of such data to “represent” national or other whole populations. Likewise, if J seeks to learn about the experiences of transgender, adopted, or sexually fluid people, all ze will learn from data is that such people are not part of the representation of this society. Similarly, if Lain seeks to ascertain attitudes concerning or held by genderqueer and / or bisexual people, most data sets called “representative” will only offer a “representation” wherein such groups do not exist in any identifiable manner. Despite these “missing” populations, researchers, teachers, and advocates will often utilize these sets to make claims about, for example, families, gender, and sexualities that – we would guess unintentionally – ultimately reproduce existing power structures as well as the marginalization of the groups left out of the official representation contained in the data. In fact, we can see similar problems for other marginalized groups including but not limited to homeless people, neuro-atypical people, and multi and inter racial people despite the use of such data to make claims about housing, mental and physical health, and racial dynamics on a regular basis.

Alongside growing recognition of issues with calling limited collections of people and measurements “representative,” we have heard some advocate doing away with these data sets while establishing more inclusive and diverse forms of data collection, measurement, and sampling. Doing so, however, would require massive changes structurally, ideologically, and institutionally, which will likely take much time, debate, and discussion to accomplish. At the same time, we have heard others advocate for maintaining existing practices or rituals while seeking to explain away the limitations or problems with existing data collection, measurement, and coding practices. Doing so, however, would require accepting the ongoing marginalization and erasure of many sections of the population from official representations. In our article, we propose a middle ground between these two extremes wherein we utilize the existing limitations to illustrate important patterns, power dynamics, and structural issues in contemporary society while continuing to push for revisions in existing data collection, measurement and sampling procedures and encouraging scholars, teachers, and others to talk about such data sets in more inclusive ways within publications and classrooms.

With this information in mind, we invite dialogue, commentary and discussion on strategies for inclusive teaching with existing data limitations and issues. Whether one seeks to join this conversation on this site or in relation to our call in Teaching Sociology or in any other space, we invite and appreciate other educators’ perspectives on these matters. To this end, ask yourself what do we say to unrepresented populations when we call data sources devoid of their presence or measurement representative of our world? What institutional and structural steps might we need to take to make our data sources and educational materials more inclusive of marginalized, underrepresented, and otherwise “missing” populations? Why do we push so hard for generalizations instead of seeking to empirically map the complexities, nuances, and diversity of our shared world, and is this pursuit of “representative” or “generalizable” claims worth the potential negative effects such practices may have on marginalized populations? While we will not pretend to have some “right” or “absolute” answers to these questions, our experiences to date within and beyond classrooms tell us these questions might be incredibly important and useful in many ways. Thus, we encourage members of our intellectual and activist communities to engage openly in these (admittedly challenging) conversations in order to move us closer to truly understanding the complexities of our social world and challenging the inequalities that exist within it.

Beyond White Canes: Translating Experiential Learning into Student Support

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Building on last week’s post, this week Xan Nowakowski explores importance of supporting and including students with different functional and ability statuses in our research and teaching.  

In my last post honoring White Cane Day, I shared some experiences from my childhood and adolescence that helped me to think about how people with blindness and visual impairment may experience life, as well as the broader importance of taking a proactive approach to accommodating students with disabilities. Today I’ll be sharing a story from early in my teaching career that highlights prejudices and misconceptions students with visual functioning differences often face, ways to address and remove those barriers, and benefits of creating inclusive environments for learning.

I got interested in issues of functioning and accommodation from a young age because my mother, a neuroscientist with multiple forms of visual impairment, helped me to learn about disability both within and outside of educational settings. My own experiences with loss of physical functioning later in life also contributed to this learning, and to my ability to put thinking into practice. These experiences also helped me to understand the rights and responsibilities outlined for students and educators in the Americans with Disabilities Act, first and foremost the idea that people are entitled to “reasonable accommodations”.

So when a graduate student I had just spent 10 minutes on the phone with about participating in a research project sounded hesitant and nervous the whole time we were on the phone, and then said “there’s something else I need to tell you” in a hesitant tone after I expressed enthusiasm for working with them, I certainly didn’t expect the next words out of their mouth to be “I’m blind”. I hadn’t assumed that they could or couldn’t see—this was the first time I’d ever spoken with them—but blindness didn’t seem like a reason to worry that they wouldn’t get the opportunity to participate in research. One of the best scientists I knew had significant vision impairment, and they worked in a highly visual field of study! I had friends with no light perception at all who were engineers, computer scientists, teachers, lawyers, artists, and so much more.

I stayed silent, waiting for the rest, waiting for them to tell me why their blindness might be a barrier to participating in my project that couldn’t be addressed through accommodations, turning the question over in my mind and coming up with nothing. Finally I said, “Okay…I’m sorry for sounding so obtuse here, but why would that impact my decision about working with you?” The silence that followed seemed to stretch on forever before they said “You don’t see that as an issue? I mean, I can’t see *at all*. I have no light perception.”

I didn’t want to dismiss their read on the situation, so I tried to affirm their concerns while also assuring them that they’d be fully accommodated and included. “No. Should I? I’m thinking about what kinds of challenges here could prevent you from participating, and I just don’t know how we wouldn’t be able to work around each one. If you need transportation, that’s easy—you can just ride with me when we go out into the field. If you need assistive technology that you don’t have already, I’ll get it for you or partner you with another student who can do the looking while you do the talking. If you need directions on how to do things that don’t require visual input, I’ll give them to you. And if I screw up any of this, you can be blunt with me about that and I’ll make any needed adjustments.”

My student sounded a little gobsmacked, but accepted my invitation for them and their guide dog to meet with me at my office and get started on the project. I then sent them an email with detailed directions using non-visual landmarks to help them navigate my office building—things like how many paces it takes me to get from the main door to the hallway from my office, when they’d hear a water fountain running, when they’d feel a vent blowing on their face, what the carpeting near my office would feel like beneath their feet. They showed up early, accompanied by a black Labrador Retriever who curled up at my feet while my student and I talked. We went over the key activities for the project, and talked through how we’d approach each one. They showed me their Braille translator, and all the features they liked to use on their computer to read screens and create documents. To this day, I have yet to work with a student who creates clearer or more concise PowerPoint presentations.

My student explained to me that this was a new experience for them—to have a professor show enthusiasm for working with a blind student. This troubled me deeply, and I asked them to promise that if they ever felt even a bit marginalized while working with me, they’d tell me. “If you’re left out in any way,” I stressed, “that’s my problem, not yours, and I have to take responsibility for it. It’s my job to think about what an educational experience is going to be like for you and plan accordingly.” They shook their head. “That’s just it,” they said. “You’re never going to make me feel left out. I already know that. You’re different. It’s like…well, those directions you gave me. It’s like you know how the world feels to me.” Then they paused. “Is that because you have visual impairments too?”

I thought about that for a moment. “No,” I said. “But my mother does. She’s a scientist who built her career on doing incredibly precise and detailed visual tracing of cells in the developing brain. She perceives light, and she uses some different technology than you do, but I learned enough from her to use my imagination. It’s not that hard to close my eyes and think about the input I’m getting from my other senses. And while I don’t have vision limitations myself, I’m losing function in my hands because of an autoimmune disease.” I asked if I could shake their hand, felt them flinch at the icy quality of my skin. “Cold, right? I don’t have much circulation in my fingers. Sometimes they won’t grip and sometimes they freeze up so I can’t use them at all. So I know what it’s like to have a disability and feel terrified that you won’t be able to finish school because of it.”

This seemed to put my student totally at ease, and we got down to real talk about our health conditions and the journeys we’ve taken to manage them. My student showed me one of their glass eyes, painted to exacting perfection. They told me about some of the absurd stereotypes about blindness they had encountered on campus. I thought the strangest one was the anger people had shown when my student wasn’t using a cane to navigate the sidewalks, as if it were their responsibility to wear a sign announcing to the world that they had no light perception. “I’m not about the cane. I have one, but I don’t use it much. Things are so much easier with my dog, so I bring her anywhere I can. And sometimes I just use my hands to navigate. It really depends on the situation and how I feel that day.”

We went over the survey quickly, and agreed to meet up at the formal training for student assistants in a couple of weeks. Having a non-sighted student participate in the project turned out to be a huge win for our team, as well as for their own confidence about what they could accomplish with their graduate degree. Other students didn’t miss a beat, making sure that walking paths in the classroom were clear while also not pushing any assistance that wasn’t desired. My student came prepared with Braille versions of each survey and showed them to the other research assistants. Partnering up wasn’t necessary when the time came to do data collection—we arranged piles of the two surveys at 9 o’clock and 3 o’clock at my student’s station, and they used their Braille versions to read the surveys to anyone who requested help.

My student took the lead on developing presentations to share our data with the community. We’d been learning all summer about health challenges in Havana, a small town north of Tallahassee, and my student excelled in putting all of the data together in a community-friendly PowerPoint. They worked with our other graduate student, who had more quantitative training but did not enjoy qualitative analysis or making presentations nearly as much, to get some statistics for the slides. Both students were invited to speak to the community, but only one accepted—my sighted student hadn’t found their comfort zone yet with public speaking, so I let them take the lead on writing a research report instead while we went out and talked to area residents.

At the meetings, participants were enthralled by the Braille notes my student used to present our results and get feedback from the group. Several people mentioned that it made them feel more comfortable talking about their own health challenges to meet researchers with different functional limitations and chronic conditions. What was a disability in a technical sense became an opportunity in a social one—an indication that people could speak openly about their own experiences without shame or judgment. I had seen this time and again in my own work, but my student said it was a first for them. “It had better not be the last,” I noted. “Your professors and employers have a responsibility to accommodate you for any task that you can safely do.”

It has been a few years since this particular student studied on campus, with or without a white cane. But we have many other students with different types of visual impairments, all of whom go about navigating the campus a bit differently. If you’ve met one person with vision challenges, you’ve met that one person, and you probably met them under a specific set of circumstances where they approached tasks a certain way. Maybe you didn’t know what the world looked like to them, or if it looked like anything at all. But if you asked yourself that question, and really took the time to think about the answer, you performed the most basic task of accommodation and inclusion. As more evidence of that sort of thinking appears on our campus each year, we all have new opportunities to take that thinking to a higher level, and ask ourselves what we can do better in the future.

White Canes and Black Coffee: Reflections on Different Ways of Seeing the World

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In this post, Xan Nowakowski discusses the importance of White Cane Day and accommodations for students and scholars with different levels of visual functioning.  

I walked into my office smiling last Thursday because change was in the air. It was White Cane Day, and this year our campus was decked out with materials to promote awareness and accommodation for blindness and visual impairment. I smiled because I’d never seen so much activity here for White Cane Day before, and it made me think about other positive changes I’ve been noticing lately to make the campus more accessible for people with limited sight. We’ve installed accessible pedestrian signals that chirp assertively when someone gets near a construction fence or crosswalk. We’ve increased the size and prominence of trigger plates for automated doors, and on some of the signs for classrooms and conference rooms that use Braille text. Hopefully these improvements are signs of good things to come.

Visual functioning has been on my mind a lot since I was very young. Despite having a lot of other challenges with physical health, I have always had strong eyesight. Even during times where my vision was affected by severely low potassium levels or side effects from medications, I was always able to see more than well enough to navigate different physical environments, drive a car, and read written text. But I grew up thinking about accommodations because of what I learned to do for others in my life, beginning at home.

My mother is one of over 85 percent of people with significant visual impairment who have few challenges with light perception. By contrast, only between 10 and 15 percent of people who score as “blind” on current clinical assessments have no light perception. I learned over time that when my mother said that she was “blind without glasses”, she didn’t mean that she couldn’t see at all. Rather, she could see a sort of “big picture” of the world with no details, either up close or at distance.

I watched my mom use adaptive techniques and technologies to complete every task she’d set for herself during the day to her exacting standards. Mom is a developmental neuroscientist by training, and spent about 30 years doing laboratory research and intensive neuroscience education before shifting her focus more prominently to teaching, course leadership, and curriculum development. When I was little, she’d fiddle with her top-quality Zeiss microscope to get a tiny section of mouse brain perfectly into focus. Then she’d trace cells onto white paper in red and blue pencil, marking the path of the ones she and my father were tracking as the brain continued to develop.

I always wondered how she achieved that level of precision in her work—how anyone would. And as my autoimmune disease slowly destroyed nerves and blood vessels in my hands, and my ability to use pens and pencils for more than quick tasks along with them, I was hit with the sharp realization that I couldn’t have done her job without the aid of a modern computer. Other things, I could have done more easily. My mother is notorious for making beautifully detailed and labeled slides for her students, which she builds by getting her screens adjusted just right so she can see the text clearly at close range. It’s a simple accommodation that a lot of people make, and that technology has made much more available to people throughout the world.

Mom’s attention to detail is razor-sharp even moments after she wakes from sleep—always has been. It’s what made her a technical wizard in the lab when she first got her start as a scientist. I’d watch her measure scoops of coffee for the percolator, each one perfectly level and symmetrical.   Sometimes she’d tease me for asking her about something visual early in the morning, before she had her trifocal glasses on. Her jokes helped me learn that what seems like a perfectly reasonable question to a person without visual impairment can seem totally absurd to someone whose vision functions differently. The fact that she could measure out coffee to the grain didn’t mean I could just expect her to process new visual information without the right glasses.

As I got older, I met many other people with varying degrees of visual impairment. From a colleague with Down syndrome, I learned that often what prevents people with this condition from living alone is not cognitive functioning challenges, but rather visual impairments that make getting a driver’s license impossible under current law. From a friend with glaucoma, I learned about smartphone apps that make it easy to read and write on a small device. From a friend with Duane syndrome, I learned about different types of special lenses that help to strengthen muscles that support the eye.

I kept learning from my mother, too—when the retina detached in her “bad eye”, when the macula puckered in her “good” one, when the cataracts started to grow from multiple surgeries. Then she had the larger cataract from her former “good” eye removed and we started playing a game called “Camera 1, Camera 2” where she’d close one eye and then the other to make the world appear in white or yellow tones. It felt okay to laugh in those moments. After all, this surgery was the first to improve Mom’s visual functioning, and she actually had to return to wearing an old pair of glasses with a weaker prescription.

Just from watching and listening to my mother over the years, I learned a lot about how people with different types of functional limitations complete tasks and solve problems. I also learned a tremendous amount about how to start constructive discussions surrounding ability and disability, and create inclusive environments for learning. Mom won several awards over the years for her work in medical education, and her office was constantly filled with students seeking help negotiating challenges in the classroom. She’d share some of these stories with me, never naming any names but making sure I understood the basics of each case.

Always the educator, my mother would ask me how I’d handle accommodations for that student if I were teaching the class. We’d talk about all of the different intersecting issues in providing reasonable and helpful accommodations: fairness to students with accommodations as well as other students, responsibilities of professors versus those of students, current laws and school policies about accommodations, social responses to people with disabilities, and much more. I didn’t know it at the time, but the education I received from my mom about disability and accommodation would become a very important resource for my own teaching activities later in life. Indeed, it would become a cornerstone of my approach to student engagement. In my next post, I’ll discuss some of the ways in which these early-life experiences have helped me create opportunities and remove barriers for students with blindness and visual impairment.

Doc Eat Doc World? Thinking Differently About Peer Review

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This week’s post is the third in a four part series where Xan and J share experience and tips managing academic publication and reviewing.  In this post, Xan discusses the elements of being a good reviewer and some ways to capitalize on reviewing opportunities in terms of careers and networks.

Hello readers, Xan here! Over the last couple weeks, we got some great tips from J on how to publish a whole bunch – see here and here. This week, I’m offering some insights on sitting at that other side of the publishing table: being a reviewer! I’ll follow up this first post next week with my own top tips for writing awesome peer reviews, and building your reputation as a scholar in the process.

Writing peer reviews is a great way to support your fellow scholars and have a hand in getting good research published. There’s a lot of good research floating around out there in peer review, so this is a very important task! Serving as a peer reviewer also provides you with the opportunity to strengthen manuscripts that are merely okay with suggestions that help the authors make them truly great.

It also certainly doesn’t hurt that writing peer reviews for a diverse array of journals looks great on your CV. If you’re Writing Where It Hurts on the regular by doing scholarship and outreach on controversial topics, or if you occupy a marginalized social location within academia, or if you just want that promotion so badly you can taste it, writing awesome peer reviews can help you get there! Being a peer reviewer helps you to shine not only by diversifying your record of professional service, but also by increasing your own chances of publishing in the journals of your choice.

As J pointed out earlier this fall, publishing a lot is very much about building strong relationships with editors at your target journals. Offering your services as a peer reviewer and writing thoughtful, constructive reviews is a wonderful way to accomplish this. There are certainly others, of course, but being a dependable and affirming peer reviewer is one of the best.

Editors absolutely do take notice of the content and quality of reviews you submit. And if you’re writing good ones, odds are you’ll receive more than a few emails from editors expressing gratitude for your excellent work, and urging you to submit your own work to that journal. Here at Write Where It Hurts, we get a lot of these emails, and we’d like to spread that good fortune around to as many people as possible.

Making an editor’s day with a really excellent manuscript review hardly requires a doctoral degree—indeed, it’s something all of you readers can do even if you are still in graduate school. Writing good reviews isn’t about the particular credentials you hold, but rather the critical thinking skills and spirit of curiosity you brought with you upon matriculation.

Of course, if you’re in graduate school right now, you’re probably also hearing a fair few horror stories about the peer review process. We all have them, and if you’re looking to publish a lot, your best bet is to treat them like literal horror stories—i.e., macabre entertainment. A certain neuroscientist whom I admire greatly once regaled me with tales of how a peer reviewer told her that her manuscript “should really be two papers, neither of which should be published”. She went on to publish the paper in another top journal.

J has given you plenty of excellent ideas for turning garbage into gold when receiving spiteful or just plain incoherent peer reviews. I’ll give you my own detailed perspectives later on how to write a truly golden review, even in those cases where you may think that a paper is absolute garbage. I have had this thought precisely once in the course of many years as a peer reviewer, and approached reviewing it from the perspective of coaching the research team in salvaging the paper if at all possible. The review earned me lengthy accolades from the journal’s editor, who in turn strongly encouraged the authors to incorporate my feedback for future submissions.

So I speak from experience in saying that the secret to writing good peer reviews is first and foremost to remember that we are all in this together. Although our perspectives as scholars may differ dramatically at times, we are ultimately part of a shared community of learners and teachers. We do our best work as members of this community when we remember that we do not stand in it alone, and that anonymity does not equate to null consequences for our own behavior. Even anonymity itself is a fantasy, of course. While the authors may never know who wrote that petty and vitriolic review, the editors certainly do, and they will remember.

Perhaps the more important question here, though, is why anyone would *want* to hit their fellow scholars below the belt in the first place. It’s a question I can’t answer with a high amount confidence because the correct response likely varies by individual, but I can certainly make some educated guesses. The hateful peer reviewer is academia’s equivalent of the Internet troll, a person whose only socially acceptable outlet for rage, which likely owes to a fair amount of perceived marginalization in their own life, is ranting into the abyss.

I suspect every person reading this article has experienced marginalization on at least one occasion in their life, and in turn entered a sort of “sneaky hate spiral” in which they eventually lose their composure and all semblance of social graces over a seemingly innocuous exchange. I’ve been there myself, and look back with a mixture of regret and empathy at those times where I’ve chewed out a customer service representative or scathingly silenced a grocery bagger for asking one too many questions about my personal life.

But likewise, I’ve tried to use those moments as an opportunity to understand what makes us find so much satisfaction in cutting down someone who has no power over us in the first place—and to use them as a means of connecting meaningfully with them and others afterwards. Beyond the world of academia, this has led me not only to apologize on the spot if I’ve snapped at someone, but also to explain what led me to do so. Without fail, the other person has responded with appreciation and compassion.

So what if we could do the same as peer reviewers—or better yet, simply jump ahead to the territory of sharing and connectedness? In my experience, we can and sometimes do…and it’s easier than we might think. Tune in next week for some tips on bridging the gap between criticism and critique by exploring our own thoughts as we examine those of others.

All the Pain Money Can Buy: How Far We Haven’t Come with Pain Control

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Editor Xan Nowakowski, whose own experiences with a painful chronic disease have inspired much of their own research, reflects on seven years of scholarship on clinical pain management, and what they have learned from lived experience along the way.

When I started doing pain management research as a graduate student at Rutgers in 2008, it was an exciting time for the field. New technologies as well as off-label uses of less recent ones like the Interstim device seemed to hold tremendous promise, and intrathecal pumps and ambulatory catheters were achieving significant penetrance among a variety of service populations. Especially in the world of post-surgical pain management, new reasons to envision a bright future were cropping up all the time.

In the long-term pain management field, pharmaceutical companies were racing to develop drugs to address underlying causes of chronic pain. At the time, I was taking one of those drugs—Elmiron, the much-lauded “wonder drug” for management of interstitial cystitis. Those of us with chronic conditions dared to hope a bit too, even as we rode the capricious waves of hope and despair that living with persistent illness always seems to bring.

The summer of 2009 was a watershed time for me. I was completing my Master of Public Health fieldwork, preparing to finish the program, and thinking about my next moves. Though I did not know it at the time, within six months of completing my research I would make the life-changing decision to move to Florida. I would leave behind the place where chronic pain had brought me to the brink of suicide, and where I had learned firsthand why pain and post-traumatic stress so often go hand in hand.

I drove all around New Jersey that summer, interviewing hospital providers and administrators about the pain management modalities they provided, and the barriers they encountered in offering alternatives to opioid narcotics. One of the most instructive aspects of my own experience with chronic pain had been the Scylla and Charybdis choice I faced for over a decade, trying to reconcile my fears of opioid dependency and functional disability with my equally pervasive fears of ultimately losing my will to continue living with intractable agony. I would later learn that I was hardly alone in these fears.

The hospital personnel I interviewed were many, representing about 35 percent of all hospitals in New Jersey. They held a variety of advanced degrees and came from a variety of backgrounds, with differences in beliefs and practices that reflected the variations in their training. But what stood out most to me was the levels and awareness and compassion I consistently observed in the people I interviewed. Every single person I talked to viewed chronic pain as a serious problem worthy of serious clinical attention.

Likewise, each and every one of them reported feeling frustrated with insurance companies’ lack of willingness to pay for non-opioid treatment modalities. According to my study participants, this was the most prominent barrier to providing what they viewed as truly effective and responsive pain management in accordance with national guidelines. We shared those frustrations—I told my story to many of those providers after we wrapped up our interviews, and learned a lot of things “off the record” that have informed much of the work I have done since.

The people I interviewed shared my frustrations over care practices not being able to keep pace with scientific innovations as a result of funding barriers. Predictably, these problems were often worst in hospitals with a high charity care population. Some of these hospitals found creative solutions for their patients with chronic pain from conditions like sickle cell anemia by working with local Federally Qualified Health Centers. But as often happens in low-resource communities, need for these services greatly exceeded clinics’ capacity to provide them.

We still had plenty of reasons to hope, though. With so many new medications and technologies hitting the market and starting to permeate best practice recommendations for clinical care, there was ample justification for thinking about a pipeline effect in which impactful innovations would reach more and more health care users with each passing year, becoming more affordable in the process. The promise of affordable health care legislation from the Obama administration gave additional weight to this vision.

The summer of 2015 is now drawing to a close, and once again I am wrapping up a study on clinical pain management. This time I had a partner in research and less driving to do, and a ready team of MPH students and undergraduate research assistants eager to assist. We conducted semi-structured interviews with university health care providers, working excitedly to fill a gaping hole in the published literature on pain management. We had a wonderful experience getting to know one another and completing our study, and I loved every moment of watching my students shine as they enhanced their key informant interviewing and qualitative content analysis skills.

Yet as we finish coding our data and begin writing up our findings, my happiness has become increasingly bittersweet. My students’ achievements mean everything to me, and always will. Their thoroughness, however, has proven to be a double-edged sword. What my students unearthed in their probing of our study participants was an old familiar tale that rang all too true: lots of good options offered up by science, but no functional translation of these modalities into affordable clinical care for people with chronic pain.

It is 2015, and I still have to carry a bottle of opioid medication everywhere I go. This mostly achieves the purpose of quelling the crippling fear of not being able to control my pain if nothing else works. Indeed, the literature suggests that often the most helpful aspect of opioid medications is their ability to confer a sense of mastery to people who live with painful conditions. I feel this restoration of personal agency quite a bit when sitting in relative comfort as I am now, typing away on an article or blog post that makes me feel like my own experiences are gifts that yield professional insight.

I do not feel it as much during those times every few weeks when I lie curled up beneath my desk, praying into empty air that my medication will kick in. I do not feel it when phenazopyridine stains the edges of the toilet bowl, or when bleach fumes rise into my nostrils as I wipe away the evidence of how far we haven’t come in providing real options for people like me.   I especially do not feel it when the phenazopyridine fails to enhance the effect of the diphenhydramine I have already taken, and I have to reach for the bottle of narcotic tablets that I still associate with defeat.

I also do not feel any mastery when I remember why I stopped taking Elmiron—the surreal moment of standing in my parents’ kitchen holding an absurdly dainty gingham-topped jam jar of my own urine, staring in suspicion at the rubbery threads of unidentifiable discharge that had started appearing with alarming frequency. I had a moment where I realized that urinating through a tea strainer to catch “specimens” was about my limit. One is perceived as deviant enough when one lives with a mysterious autoimmune disease, even without making a habit of urinating in jars to inspect the contents.

I should interject that these shortcomings in the field are not entirely the fault of insurance companies. As the Affordable Care Act was being developed and organizations like the Institute of Medicine were continuing to refine their recommendations for best practices in clinical pain control, a storm was brewing that set the field of innovative chronic pain management back substantially. The retraction of some two dozen published studies on multimodal analgesia crippled other clinicians’ efforts to incorporate integrative approaches using new therapies into their own programs of care. As predicted, the field has yet to recover fully.

Of course, when you live with a painful chronic disease, you learn quickly that you never truly recover. Your body changes; your life changes; and your brain changes right along with them. Illness management becomes the name of the game—one that often feels like Whac-a-Mole rather than a game in which one defeats a series of bosses and wins. Good science, conducted by people with curious minds and compassionate hearts, is one of the best weapons we have in this game. But abuses of research ethics—even by scientists who may have the best of intentions in mind—can leave us fighting fisticuffs against enemies we cannot hope to vanquish on our own.

Later this fall, I will be doing a follow-up post here about the 2009 multimodal analgesia scandal and its broader implications for ethics in medical research, adding a perspective of lived experience to the insights offered by other clinicians as they reacted to the news about Dr. Scott Reuben’s research fabrications. In the meantime, I know that when many of you Write Where It Hurts, you are doing so in the most concrete and literal sense possible! So I encourage all of our readers to share stories and insights about pain management, including any research you have done on the topic and any lived experiences that inform your work.

Teaching Where It Hurts

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In this post, Xan Nowakowski and J. Sumerau reflect on their experiences personalizing sociology in the classroom (see their recently published Teaching Sociology article on this topic here) in hopes of facilitating dialogue and debate about the benefits and limitations of incorporating professor biographies into sociological curricula.

As people who write about, teach, study, and engage in advocacy related to chronic health conditions, social inequalities, sexual and gender experiences and identities, and managing trauma, we have become intimately aware of the potential personal experience and stories can have for facilitating learning and motivating concrete action among our students, colleagues, and communities. At the same time, we know all too well that structural factors regularly limit who can say what in classrooms in much the same way they do beyond the academy, and that academic traditions have long privileged rational or remote notions of instruction over emotional and personalized approaches. As we did in our recently published Teaching Sociology article, we would like to encourage our colleagues to consider these options and structural patterns in hopes of spurring dialogue about the potential of using our own experiences within inequitable structures to help students and colleagues see the pain created by social inequalities on a more personal level.

As we did with the establishment of ongoing conference sessions, an upcoming book project, and the creation of this site, our focus here lies in the potential of writing (or researching, teaching and advocating) where it hurts. When Xan shares stories of almost dying or struggles with doctors and other medical professionals unfamiliar with what to do to treat their chronic physical health conditions, for example, students come face to face with the results of our flawed healthcare system in the midst of their own lives and worldviews. Likewise, when J. shares stories of being physically assaulted for daring to go on a date with a cute boy or watching a lover die amidst both caring and supportive and judgmental and hateful medical professionals, students witness the concrete tears, pain, and sorrow that come from experiences within interlocking systems of inequality embedded throughout our society. In these and many other cases, we utilize our own pain to pull social inequality out of the abstract and into the actual lived experiences of the students and colleagues who interact with us.

As we advocate in our recent article and practice in our own classes and on this site, we seek to personalize social inequalities for our students. Rather than things they read or hear about in class that happen somewhere “out there” unseen to them, we use our own experience and narratives shared by other people occupying marginalized positions or experiencing traumatic events to translate “out there” into personal realities with actual faces, personalities, voices, and bodies in the eyes of students and colleagues. In fact, both students and colleagues regularly experience their own organic emotional reactions to social patterns in the process, and tend to very quickly make the link that if it could happen to “their professor” then it could happen to “them” or “their loved ones” as well. Not surprisingly, such realizations very quickly transform societal patterns of inequality into anything but abstract concepts. As a result, our willingness to talk about the pain or teach where it hurts often translates into incredibly passionate and engaged rooms full of students especially willing to discuss and consider concrete steps they can take toward more positive social relations.

As we note in our recent article, we developed these approaches – individually and collectively – over time by building the entirety of our class offerings around discussion, consent, and application of scholarly materials to personal experience. In terms of discussion, for example, our courses are organized – from the first to the last day – around personal or collected emotional narratives that we share with students in relation to each course reading and topic. In so doing, we ritualize personal narratives within the class so students become accustomed to this form of interaction and dialogue throughout the course. Likewise, our courses are built upon an emphasis on consent wherein students are never required to disclose their own personal experiences or use ours in their work, but they are allowed to do both of these things on any assignment or in any class meeting where such things are relevant to the given assignment or class topic or assigned material. We thus remove grading from the equation by giving students ample resources to do just as well in the class no matter their experience and / or interpretation of the personal content we or other students share. Finally, we strategically link every scholarly piece or activity in a given class to specific personalized examples so students are able to always see the real world (or applied) aspects of the materials we cover in their own lives, in our lives, and / or in the lives of other people. Our experiences – as well as some initial negative experiences others have had when first attempting styles like our own without these ingredients – tell us these (and maybe other) efforts to create classrooms where students get used to and feel safe with vulnerability may be essential ingredients in personalizing instruction.

With all this information in mind, we invite dialogue, commentary and discussion on the possibility of personalizing scholarly work through teaching and other methods. Whether one seeks to join this conversation on this site or in relation to our call in Teaching Sociology or in any other space, we invite and appreciate other educator’s perspectives on these matters. To this end, ask yourself what ways you do or could personalize sociology? What might be the benefits or limitations of doing so? What institutional and structural steps might we need to take to serve and protect those who share their pain in the service of education and advocacy by and for their students and other colleagues? While we will not pretend to have some “right” or “absolute” answers to these questions, our experiences to date within and beyond classrooms tell us these questions might be incredibly important and useful in many ways.

Caught in a Dream: Discovering an Integrated Self After Dissociation

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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