Writing: Alone.

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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.

“Unacceptable progress” towards degree

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The following anonymous guest post is by a doctoral candidate at a public research university in the United States.  In this post, he reflects on making unacceptable progress toward his PhD and feelings surrounding such experience.

I do not think I’d be here today if it were not for my sardonic sense of humor – I would have succumbed long ago to the stress and hypocrisy of the daily lunacy we call life. For the longest time, I was able to laugh away these most unfortunate aspects of human existence, at least while I was “on top” that is. However, I am no longer anywhere near “the top” in any socially relative aspect of my life… and ‘tis the season for funding. This essay is composed of my personal experiences concerning the perverted business of academia, how I am the embodiment of “unacceptable progress” towards my PhD in sociology, and why I’m still here. To be blunt- and to get the more complicated “why” question addressed at the very least – I honestly would not be an active student at this moment if it were not for mindfulness practices. For the first time in my life I am (kind of) comfortable with uncertainty and “letting go”.

Each year, my department conducts the uttermost warped evaluation process of graduate students enrolled in both the masters and doctoral program. In an almost cult-like gathering veiled in mystery, a handful of professors determine the most crucial part of a graduate student’s existence – Funding. Adjectives aside, this “annual review” is a rather reasonable procedure and makes perfect sense in the context of a soul-crushing bureaucracy. But here is the sick part of the whole thing – while paperwork for the annual review is due mid-December and funding decisions are essentially made in January (current graduate students are ranked in order in a top secret list), students are not informed of their fate until early March (via physical mail to add insult to injury). During that 3 month period, every other thought a graduate student has revolves around funding concerns for the upcoming year. This creates a demented cycle of mental and emotional harm which intensifies each day as March approaches. Speaking out against this process is not a perceptible option as there have been repercussions in the past.

For the past 4 years, around this time of year, I would eagerly check my mail each day in hopes of receiving a letter of funding. Each day it was absent caused me to worry incessantly, but this year is different. I am not expecting a letter. I am hoping, sure, but I am not counting on it. In previous years I was the golden boy of the department, an overachiever making acceptable progress towards my degree. Yet after a scuffle with a sadistic professor, a failed comprehensive exam, and 3 outstanding independent studies, I received a notice of unacceptable progress towards my degree completion this past month. I had stumbled this past year for sure. I was not mentally well from June to November following a series of deaths and illnesses in my family combined with a period of no insurance coverage (which meant no doctors visits or medication). Yet now that I am on my feet so to speak, the last thing I need is to dwell on my past failures. This seems to be the plight of civilized humans, to obsess over what could have been and what will become of the future.

“Are you sure you are not just in denial,” asked a good friend of mine when I told him that I am content with my unacceptable progress. This is a good question but I believe the answer to it is ultimately no. I am not denying that I am now officially certified as a lousy student, but rather embracing the fact that there is nothing I can do to change that at this exact moment. If a depressing string of thoughts about my academic fiascoes occurs late at night after a rather productive day, then why should I let it affect me? Instead, I now acknowledge these thoughts and the feelings they temporarily instill in me, and then I situate myself back in the present moment. I am so far managing this semester rather well – even though this essay is in part based on a paper which was late – and worrying about the past and future can only negatively impact me. Letting go of these thoughts of failure or impending suffering via mindfulness practices has been tremendously helpful in my day-to-day life, and therefore by default has also been helpful in the long run.

Perhaps the single largest stressor in my life is uncertainty. But in a paradoxical moment of clarity, I am now certain of one thing – that I will always be uncertain. I have never known the concept of “job security” and doubt I ever will, but that is part of the fun in life. I do not want to live a rationally ordered existence where one works to live. I rather enjoy spontaneity and wrinkles in life’s “plans”, and the ideal of omniscience tastes kind of bland. To be human is to feel, and perhaps this is part of the reason why negative experiences feel so bad – pain, misery, suffering, depression, etc. We do not want to have those feelings so we take measures to avoid situations where they may occur. But when the uncomforting notion of uncertainty is embraced as a constant and we let go of the desire for a predestined life, uncertainty becomes less distressing. I do not know where I will be or how I will secure life’s necessities come next fall and there is nothing I can do about that fact. Will worrying help improve my life situation? No, but I cannot help but to worry. In being mindful of worrying over uncertainty, I acknowledge the feeling and bring myself back to the present moment. Additionally, this is an empowering process (I am in control of my life right now) whereas worrying is a depowering process (I have no control over my fate). In an odd way, we gain power by surrendering power. We want control over our “fate” but this desire can overwhelm us with worry, guilt, and ultimately stress. Though a philosophical metacognitive argument, I believe that by letting go and enjoying the moment, we reclaim power over ourselves.

What I have been describing so far may seem self-defeating, judgmental, and critical in a negative manner. When I say that I am “the embodiment of unacceptable progress”, I am appealing to my own critically demented sense of humor. I tend to be a satirist and like to push negative aspects of my life into the realm of the absurd. Laughing is the kindest, most rewarding condition I can bring about myself. If I imagine that the professors who secretly make funding decisions do so in some kind of a dark ritual involving robes and goat blood – and this thought makes me laugh at the (very real) ridiculousness of the process – then I am better off for it. I know of nothing more loving than that.

I cried the entire day when I assembled my annual review this past December. After over 12 agonizing hours of reflecting upon and writing down my achievements and shortcomings (mostly shortcomings), I had a narrative of merely 1045 words to sum up the most painful year I have experienced so far in my life. I have not – and will not – receive any feedback on that most personal narrative either as that goes against protocol. So what good did that distressing day of forced reflection do to my then-present psyche? None whatsoever as the next few days in particular were spent more or less in a state of emotional and physical recovery. If I was aware of this then, I never would have engaged in that activity of needless suffering. I would have submitted a blank sheet of paper (if anything) to the annual review committee. The end result is me not getting funded, yet the approach I took was one of intense judging and self-loathing.

I have become accepting, even welcoming, of uncertainty as it relates to my future. This enhanced awareness has allowed me to reframe some situations in a more holistic light and eschew others altogether. I have no clue where I will be next semester and I am perfectly okay with this. I have even put some semi-serious applications into rather prestigious job openings – I did not get “hung up” on getting it right, but rather had fun writing the cover letters and such. Who knows what will happen. Maybe my passion for teaching will come across more clearly and I’ll get a call back.

Shit happens and it will forevermore. As a life-long overachiever, I have always strived to evade shit but was lost to the fact that I was centering my life on and around shit itself. Through my deliberate and rigorous avoidance of shit, my life had become shit. Shit happened and it will happen again, but right now as I write this paper, there is no shit in my life. It’s all good here. Even the cat boxes are clean. And that’s how I feel about my life right now as an “unacceptable progress” student. I may not complete my PhD by the time I am 30 years of age (a little over 3 years from now), but I feel “clean” by accepting this.

The Anxiety Inscriptions

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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.

Recovering from Graduate School: Rewriting the Trauma Narrative

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Eric Anthony Grollman (@grollman) is a Black queer feminist sociologist and intellectual activist; they are an Assistant Professor of Sociology at the University of Richmond. They are the founder and editor of the blog, Conditionally Accepted, which recently became a regular career advice column on Inside Higher Ed.  In this post, Dr. Grollman reflects on negotiating and making sense of trauma related to graduate education. 

“What’s the deal with this PTDS book,” my parents asked when they last visited me. Common understandings of post-traumatic stress disorder (PTSD) – the mental scars that soldiers, survivors of sexual violence and childhood abuse carry – certainly don’t call to mind any aspect of my life. My parents even sat through my talk on intellectual activism at the 2015 Conference of Ford Fellows, in which I attempted to identify the structural and cultural factors of graduate school that inevitably led me to be traumatized by my graduate training. But, maybe they assumed I was using the term “trauma” to be provocative or dramatic. With some embarrassment, I had to explain that I was, indeed traumatized by grad school, experiencing the symptoms of complex trauma, which is not (yet) officially classified in the Diagnostic and Statistic Manual (the major psychiatric guide for mental disorders in the US).

When my therapist pointed out the trauma – really only repeating back to me comments I had made just moments before about being traumatized – I also resisted. Seriously, who gets traumatized by educational training? I wasn’t physically attacked, I was not raped or sexually assaulted, and I did not endure torture or extreme warfare. Coursework, a qualifying exam, a master’s thesis, a dissertation, and some teaching experience – these, on the surface, are about equipping me with the skills necessary to become an independent scholar, the skills necessary to obtain a PhD and, ideally, a tenure-track job. To help me to begin to see the trauma, my therapist encouraged me to write a trauma narrative.

So, I took some time to write down every challenging, offensive, and potentially traumatizing event or condition that I could draw from my memory. In the midst of writing about one memory, I would have to make a note to write about another that came to mind. “Oh, how could I forget about that!” I thought several times in this process. In the end, I had nearly filled a 70-page spiral notebook with such memories. When I flipped through the notebook, I asked myself, “who wouldn’t be traumatized by all of this?” Guilty of being an academic geek, I took the time to identify some common themes: 1) repeated exposure to and witnessing of microaggressions, stereotypes, and discrimination; 2) devaluing of my research interests, in particular, work on my own communities (i.e., people of color, LGBTQ people, and, especially, LGBTQ people of color); 3) the undermining of my career choices, namely eventually becoming a professor at a liberal arts college; and, 4) an explicit attempt to “beat the activist” out of me through the graduate training.

I have continued to work through my therapist to begin to recover from the trauma. The initial and, it seems, hardest step has been to name the trauma. It has taken some time to stop denying that grad school could be so bad, that I was somehow too weak to survive traumatizing circumstances, or that it is my fault for not leaving at the first sign of trauma. I, like most others, would never expect trauma to be one of the outcomes of graduate training. So, blaming myself or denying the trauma doesn’t help.

Once my therapist and I opened that door, I began to grow impatient. Now what? I wanted some sort of homework to do outside of therapy sessions, though I learned that was not my therapist’s approach. So, I looked into buying workbooks that I could do on my own. Unsurprisingly, most that are out there focus on what my therapist calls “big T Trauma”: sexual violence; war; child abuse; being robbed; having your house burn down; and, natural disasters. My own struggle with complex trauma – “little t trauma” – is the result of prolonged trauma that is interpersonal in nature, and likely occurred at a key developmental period (early adulthood, in my case). Since it is not included in the DSM, there are few workbooks that even mention it, let alone offer resources to help recover from it. But, I eventually found one that does: The PTSD Workbook (second edition), by Mary Beth Williams and Soili Poijula.

I’m not as far as I’d like to be into the workbook, but I find that digging into traumatizing experiences is not something I care to do daily. But, so far it has been helpful to address it head on. Recently, I completed one of the exercises in which they instruct readers to “[t]hink of another person who has gone through a similar event. Knowing now what most helped you survive, what would you say to that other person?” I don’t think that I followed the instructions, but I ended up reflecting on something much more powerful. I ended up rewriting my trauma narrative, albeit an abbreviated version.

Rewriting the Trauma Narrative

Let me give some context. In the process of naming the trauma, I have closed my memory around all that was taken away from me in the process of completing my PhD and obtaining my current tenure-track position. I entered my PhD program in sociology as an activist with a desire to study racism in queer communities using qualitative methods. I figured sociology would be more likely to open doors to gender studies, sexuality studies, and even student affairs than the other ways around. A desired joint PhD with gender studies was discouraged. A desired graduate minor in either sexuality research or gender studies was discouraged. An intended dissertation in trans health was discouraged. I also learned to self-police my interests; for example, I selected a qualifying exam in social psychology rather than gender, sexualities, or race/gender/class/sexualities. I left graduate school with a PhD, trauma, Generalized Anxiety Disorder, a cute boyfriend, expertise in medical sociology using quantitative methods, and an acute awareness that I must hide any activist work or community service. The 28-year-old me was hardly an older and wiser reflection of the 22-year-old me.

That is, in my efforts to identify just how traumatizing graduate school was, I have focused almost exclusively on the negatives – what I have lost, what I compromised, what dreams have been dashed for the sake of job security. This has been a necessary step for me to stop denying how bad grad school was and blaming myself for the trauma. But, the unintended consequences of this focus is that I have lost sight of the ways in which I did survive and thrive, pursued my dreams and values, among other positive highlights of those six years. A while ago, I tried to write a positive-focused complement to the trauma narrative, and only came up with missing the excellent restaurants in Bloomington, IN and the friends that I made there. I also met my now-fiancé there, who moved to Richmond, VA with me. And, my excellent training – despite the compromises I made – opened a number of doors in terms of jobs and professional networks. So, hey – at least I don’t regret my time there. But, that effort felt like settling for an otherwise traumatic experience.

So, back to the prompt from The PTSD Workbook. I began my answer to the question about what I would advise to others, presumably to prevent being traumatized, with: “In the thick of [grad school], I attempted to maintain activities, relationships, and projects that were not valued by my program, but that fed my spirit nonetheless.” From there, I listed example after example of the things in which I was involved during my time in graduate school. Contrary to the sentiment that I left graduate school anything but a sexuality scholar, I identified plenty of examples of the ways in which I clearly demonstrate active involvement in this subfield. I published two articles on sexualities that were co-authored with people outside of my university; in fact, my advisors only became aware of these papers upon noticing them on my CV. I also started one on trans health late in grad school, which was finally published in September 2015. As the founder of the short-lived Campus Coalition for Sexual Literacy – an initiative through the Center for Research and Education on Gender and Sexuality as UCSF – I organized a few events to promote sexual literacy on campus, including a conference on transdisciplinary approaches to sexuality research. I attended a few conferences and workshops in the field of sexualities. And, I also was involved in service on campus and in the community that promoted community-building for LGBTQ people, as well as healthy relationships in the queer community. I could go on…

In essence, I rewrote my trauma narrative. In this narrative, I didn’t sell out, I didn’t allow others to dictate my career, and I wasn’t powerless. Rather, this was a narrative about pushing back against mainstream expectations in sociology to build my career as a scholar-activist whose work focuses primarily on sexualities. This narrative allows me to recall ways in which I defined my career for myself, with necessary compromises along the way. Would the trauma have been worse if it weren’t for feeding my soul with sexualities work and activism? Or, was the trauma the result of defying mainstream expectations in sociology by pursuing such work? I’m not certain at this point, and cannot actually say what could have been. But, I’m in a better position to say what actually was. Yes, I was traumatized; but I was no passive victim.

I hope through speaking openly about the trauma, about the efforts to “beat the activist” out of me, and the training that attempted to steer me away from studying my own communities to make it easier for current and future marginalized grad students to weather the challenging circumstances of grad school.

 

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

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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.

Radical Reprioritizing: Tenure, Self-Care, and My Future as an Intellectual Activist

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 Eric Anthony Grollman (@grollman) is a Black queer feminist sociologist and intellectual activist; they are an Assistant Professor of Sociology at the University of Richmond. They are the founder and editor of the blog, Conditionally Accepted, which recently became a regular career advice column on Inside Higher Ed.  In this post, Dr. Grollman reflects on balancing life and the tenure track as an activist scholar.

I am currently wrapping up my third year as a tenure-track professor at the University of Richmond – an elite, small liberal arts college in Richmond, VA. This semester is the first time I am teaching courses I have taught at least once before; and I’m teaching the “two” of my 3-2 yearly course load. Finally, I have a little breathing room to really advance my research.

But, the service demands, and my own campus, community, and professional involvement have increased with each passing year. As far as I know, I am the only out Black queer faculty member on my campus – one of few LGBTQ faculty in general, and one of few faculty of color in general. My classes tend to have a heavy queer, (Black) feminist, and antiracist focus. And, I make an effort to be visible on campus, hopefully letting my fellow “unicorns” on campus know they are not alone. Students’ need for me to be a teacher, mentor, and role model seems particularly great at our small, slightly diverse university.

And, then there is my intellectual activism, especially my blog, Conditionally Accepted, which I hope will expand into a bigger initiative for change in the academy. There are the symposia, conference panels, and workshops at which I have spoken about discrimination, exclusion, and health problems in academia. Though less consistently, there is work I have done to make academic research and knowledge accessible to the community. Trying to earn tenure to stay in academia, while also working to change academia, sometimes I feel as though I have two jobs – and those two jobs are typically at odds with one another, unfortunately, to the detriment to my health.

I am undeniably spread thin. Due to fear of unclear and biased tenure expectations, I do my best to exceed what I suspect that I need on the research front. (Don’t we all aim for that “slam-dunk” tenure case? And, at what cost?). I sometimes push even harder on the research front to “compensate” for my advocacy – again, owing to fear of how others’ perceive my approach to being a scholar. Despite the fears that my blogging would cost me my job, I’ve kept at it since I started my position in August 2013; I’m now the editor of an Inside Higher Ed career advice column that is read nationwide (at least among academics). I’m frequently invited to speak on campus, attend various events, facilitate discussions, and so forth. I’m flattered. But, I’m also frustrated that the campus hasn’t employed more faculty like me to share the labor. For, that’s what all of this is – work. Work that is incredibly important, and affirming, and enjoyable. But, I’m only one person!

I’m only one person. A person who has suffered from Generalized Anxiety Disorder since 2010. An academic who was traumatized by graduate school, and is now seeing a therapist to begin the recovery process. And, now I suffer from Irritable Bowel Syndrome, probably from the anxiety and trauma. And, I finally got over myself and started taking Lexapro. Health-wise, I’m a mess, or at least a work-in-progress. Why push myself so hard at work? If these were physical health problems, I would not hesitate to rest, resist demands of work, pace myself, and seek proper treatment.

Radical Reprioritizing

Recently, my perspective has changed. I have shifted toward taking the long-view. I want to be in the academy for a loooooong, long time. I’m coming for the structures and culture that allows for the exploitation of, yet lack of support for, minority scholars. I want to educate thousands of students about the social problems of the world, and what they can do to solve them. Maybe I’ll serve as a dean or provost one day; hell, maybe I’ll defy the odds and become a university president. Or, forget thinking inside of the box; maybe I’ll start my own academic justice organization, working with multiple universities rather than within just one.

With that in mind, I have realized it is time to radically reprioritize. I have identified the two most important goals for my future as an academic and intellectual activist: 1) get healthy; and, 2) earn tenure.

Self-care is my number one goal. That means making a serious effort to do the things that will promote my mental, emotional, physical, and spiritual health. I hate exercise, but it’s good for me. I can never seem to find the time to meditate, but I have to let my brain recharge just as I let my body recharge nightly. I’ll continue to limit work to 8am-5pm on weekdays (with no work on weekends, of course), with a mandatory lunch break for leisure reading, seeing friends on campus, or walking. I will continue to see my therapist, take my anti-anxiety medication, and use workbooks and private journaling to recover from the trauma and anxiety. I realize that I will be useless to everyone if I am sick and suffering or have a limited capacity for anything other survival. And, to be grim, I can’t help anyone if I die young. I deserve to be healthy and happy!

Earning tenure means lifetime job security at my current institution – an incredible privilege these days, even in the academy. It means more freedom to take chances in the classroom, in my research, and even in my advocacy. Tenure means power and access to make meaningful change on campus, in my discipline, and in the academy in general. It will also come with the responsibility to be in service to other academics, serving on various committees, mentoring junior faculty, and becoming involved in faculty governance. I find six years on the tenure-track tends to encourage junior scholars to play it safe, prioritize their own career and status over change and service, and promotes worry and mental illness. But, it is, at worst, a necessary evil to make real change.

Together, these goals help me to determine whether I can accept or take on a new invitation, initiative, or opportunity. For example, when I received a last-minute invitation to facilitate an on-campus discussion about racism scheduled for late in the evening, I quickly declined. Staying late and providing the necessary emotional energy would not have enhanced my health, and I am well aware it would do little to strengthen my case for tenure. But, I did finally agree to attend enVision – a social justice weekend retreat hosted by my campus’s Office of Common Ground; I found it incredibly affirming to interact with students outside of the traditional classroom context on these issues. Blogging doesn’t help me for tenure, per se, but it is a necessary outlet for me to vent about injustices that I and others have experienced, to build community, and advocate for change. Unfortunately, I realize there are still some things that will help for tenure that aren’t so enjoyable or health-enhancing – like networking at conferences, occasionally publishing in high-impact journals, etc. As I said, it’s a necessary evil; I can chalk it up to job security as a matter of health and my livelihood.

But, admittedly, there is also a third focus: my post-tenure future. I have heard the horror stories of post-tenure depression. Junior scholars who keep their mouths shut and their heads down find that they are lost when they raise their heads upon receiving tenure. I am beginning to work toward the career I want for myself as an Associate (and eventual Full?) Professor. Maybe my research will catch up with my passion and advocacy; that is, I could turn blogging into actual research on injustices in academia. Or, maybe my joke that Conditionally Accepted will serve as the launching pad for my academic talk show, Academic T with Denise, will actually become a reality. (I could live with just a podcast like On Being, though.) There is life after tenure; so, I’m doing what I need to to have both of those (life and tenure), but also doing the groundwork for my goals for intellectual activism post-tenure.

I am fortunate to have friends, family, and colleagues who support me in these endeavors. I realize that this is not afforded to everyone. But, I also recognize that these concerns – job security, health, and needing to make a difference – are particularly heightened for me as a Black queer person. That is, maybe I’d be stressed, but not mentally ill and medicated, if I were a white cishet man. Maybe I’d be a touch nervous about tenure, but not concerned that my work would be trivialized as “me-search” – even if I studied the lives of other privileged people. Maybe, maybe, maybe – but that is my reality (for now). I need to stick around along enough to ensure that this is not the reality of future unicorn scholars.

 

On not Writing

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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.

When it hurts not to write

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In this post, J reflects on their writing processes, and asks readers to reflect on these aspects in their own lives and the way writing or feeling unable to write at a given moment feel and take shape in our own lives.

How do you go about writing?  What is your process?  What do you do when you cannot write for any given reason?  Do you look forward to writing or is it something you have to make yourself do?  Do you operate via a structured schedule, with set time limits and goals, and other rules to keep you on track?  By contrast, do you operate in a more fluid manner writing when the feeling comes or an idea presents itself or some combination of these and other factors?  Do you need to be indoors, outdoors, anywhere specific to write?  Do you keep little handwritten notes or recordings on your phone or maybe a journal littered with in progress ideas and analyses?  These are simply a few of the multitude of options and variations I have come across among other writers over the years.  In this post, I want to share my own experience to encourage others to reflect on how you go about the process of writing and what writing is like for you.

In my case, writing is simultaneously a major part of how I make a living and a huge chunk of my personal life.  Very few things that I have encountered in this world can match how wonderful it feels to write.  I write creatively, academically, publicly, privately, empirically, theoretically, collaboratively, and solo, and attempt to write as much as possible because it is a prime site of fun, pleasure, and enjoyment for me throughout my life.  Despite these lovely aspects of writing in my world, it is also deeply painful for me when I cannot write – I feel lost, like a part of me is missing – and no matter the reason, anytime I cannot write my moods, emotions, and even self concept (i.e., my own estimation of who I am, what I’m worth, etc) suffer greatly.  Put simply, for me writing is a delicate ongoing balance between pleasure (when I can do it I am filled with joy) and pain (when I cannot do it I feel terrible).  I can’t pretend this is the same or different for other writers, but this is what it feels like for me.

All of the above is complicated by the fact that I (best I can tell) have no control over whether or not I can write at a given time.  Likely tied to other elements of the way my brain operates, I go through shifts or fluctuations wherein sometimes writing is the easiest, most natural, and smooth experience in the world, and at other times I just cannot do it no matter what I try or what deadlines or projects I have at my disposal at the time.  In the former case, I’m basically in paradise writing every day and rather communicative in other ways.  In the latter case, however, my entire mood shifts downward, I become very quiet and isolated, and I feel broken or lost.  This ongoing experience means that I write in cycles – or bursts as a close friend of mine termed the process a while back – wherein the difference in me, in what I produce, in how I feel, in how I communicate, and in how I spend my time is noticeable to those closet to me (in fact, many times these wonderful people get very worried about me during “not writing” times because of how down, distraught, and isolated I become and I’m quite lucky to have people who care so much in those moments and reach out to check on me).

This cycle in many ways dictates or shapes the rest of my life.  From August 2014 until the end of January 2015, for example, I could not write, and as is generally the case during such a “not writing” period I was very isolated, depressed (both emotionally and in terms of clinical symptoms) most of the time, and people I collaborate with had to basically wait until the part of me that writes – as one friend put it – “came back to life.”  On the other hand, from February 2015 until the end of November 2015 I experienced a nonstop burst wherein I wrote every day, filled up the inboxes of colleagues, collaborators and friends, and felt happy, satisfied and able to be social (as much as I ever am).  At present, I’m somewhere between the two extremes, which is honestly a new place for me.  I can write a little bit, but its harder than when I’m “on” one of my bursts, but I also have days where I just stare at the screen and want to (or do) cry and scream.  I don’t know if this is a new addition to the cycles or a one time thing, but I feel like I’m located in between the two versions of me I’ve become comfortable with.

This newfound in between “writing” and “not writing” led me to wonder what writing is like for other people.  While this is something I have talked with many people about, I thought it might be useful to ask on a broader scale what the writing processes looks like for others, and also to offer my own experience for anyone who has yet to learn that there is not just one way to go about writing (a curious lesson I come across that some undergrad and graduate students have picked up from some unknown sources).  After years of seeking advice, figuring out my own methods, and working with people who have very different methods (for example both Xan and Lain here at Write Where It Hurts have different writing processes and experiences than I do), I’ve become fairly certain that there are a wide variety of ways people go about the process of writing.  As a result, I want to encourage others to think about these processes, what works and doesn’t work for a given person, and how we can utilize such insights to both Write Where It Hurts and manage the ways it may hurt when we have trouble writing.

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.