[[Note: trigger warnings for mental illness, bipolar disorder, medication, and some spoilers for Hannah Gadsby’s Nanette.]]

These days, I call it burning, but for most of my life, I called it flying.

It’s that feeling when you’re wrapped up in a writing project so hard you look up, and half a day has gone by. You haven’t moved, you haven’t drunk or eaten or talked to anyone. You work and work until your knuckles hurt, and there are words flowing out of you, and you can’t stop until it’s all done. Then you look up, realize what time it is, and fall over because the words are done for the day and you’ve been doing it. You’ve been flying.

That’s what writing when you’re me feels like.

Well, a lot of the time. Some days it’s just normal. I get up, I do my morning routine (take my meds, get some grub, boop the cat, check my email, mess around on Facebook) and then it’s off to the word mines. And on those days, they are indeed the word mines. I check an outline, I write notes, I putter around, I get the words going however I can, tugging that little mining cart up the hill towards those far-off paragraphs and… y’know, this analogy has gotten away from me. I digress.

Those are the hard days at the job because that’s what it is – writing, like making any art, is a job. It’s craft and talent and passion rolled up into one ball. It’s doing a thing you worked hard to learn to do the best you can. You’re capturing those weird little ideas rolling around in your head and making them into words, then lines, then paragraphs, and somehow they’re all supposed to reach out to someone who reads them and make their brains go POOF, I LIKE THIS. No pressure or anything, writer, just take the ephemeral and translate it onto a page.  You make it happen as best as you can.

Then, there are the other days. The days when BLEH becomes BANG. The days when something just clicks and comes roaring down the pipe inside my brain and it’s all I can do to get to my computer because it’s ready to go and that’s it. Get out of the way.

fantasy-2934774_1920I call it burning these days because that’s what it feels like: like there’s an idea inside me burning its way out. But when I was younger, I called it flying. What I really meant was controlled falling. Like there was a tornado going on and I would leap off something and ride right through the middle of it, all the way up, chasing words. Because that’s what it felt like for me, rolling on through the manic energy that comes with being bi-polar.

There’s a lot of folks who equate the manic energy of being bi-polar with the creative spark that drives artists to brilliance. They point to so many great artists in history who lived with mental illness and say, “there it is, that energy, that’s what made them great!”

Except for so many artists, mental illness didn’t make them great. It made them ill. And if they weren’t careful, it made them gone.


MV5BY2I3MThmYTctZTU4YS00YWNmLTg4YzktNDY0ZGE5MmQ3Y2Q3XkEyXkFqcGdeQXVyMTMxODk2OTU@._V1_Hannah Gadsby’s blockbuster comedy special “Nanette” was billed as exactly that: a comedy. She was meant to get up on stage, make some jokes, and entertain us all on Netflix. Instead, Gadsby delivered what I can only call a commencement speech for comedians, a bait and switch that took the audience from laughter to silence and ultimately to a standing ovation. Gadsby, a queer comedian with a career going back over ten years, started her performance with a fairly standard routine, drawing in the laughs. Then she started explaining how jokes worked, about how they increased tension and then broke it into laughter.

Then, she stopped breaking the tension. And just rose it higher and higher by telling the truth.

She spoke to her audience about a lot of things. Her family, and what it was like coming out to them. About violence, about triggering subjects. She broke from the funny parts of her routine a little over halfway through and talked about quitting comedy because she was tired of making people like herself, a lesbian still fighting with some deep shame issues, into a punchline. I watched in spell-bound silence as Hannah Gadsby deconstructed comedy to its most basic building blocks and rebuilt them into a soapbox, a grand forum where she read the audience a monologue of pain and vulnerability, her farewell to wisecracks and the opening of perhaps a new chapter of honest, open speaking in her life. She was out to speak her truth, and by the end, I was in awe.

It was somewhere in the middle where she told people to fuck off when telling artists to “feel” for their art that I felt the ground open up beneath me a little and I cried.

 

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Sunflowers by Vincent van Gogh

She talked about Vincent Van Gogh, the artist who suffered during his life from mental illness, self-medicated, was treated by doctors and struggled to succeed despite his obvious impossible talent due to his sickness. She talked about her knowledge of his life, thanks to her art history degree, and how he only sold one painting his entire life – not because he wasn’t recognized by his community as a genius, but because he struggled to even be part of a community due to his illness.

 

And I thought of the flying and the hard days at the word mines. I thought about the days when I heard the tornado in my head and couldn’t make the words get to my fingers. I thought about the frustration, the depression, the difficulties talking to people about what it sounded like inside my skull some days when I could barely pay attention because of the rush of words and ideas.

Hannah Gadsby told people artists don’t have to suffer for their art, and I’ll forever thank her for having the guts to stand up and say that to the world. Because I used to believe it was true.


anxiety-1337383When I was sixteen, I was diagnosed with bipolar disorder type 2.

I came from a family that didn’t really get what being bipolar meant. My parents tried to get it, but when I’d do something irresponsible, it was always because I was ‘bad.’ I tried to explain how it was impossible to keep my whirlwind mind straight sometimes. How it was a battle against depression to get up in the morning and go to class. When I flunked in school, I tried to explain why, when I overcharged my credit card on a manic binge, when I cried for days and couldn’t stop. But those were the bad days. And the good days – those were the days I could take on the world, where no one could stop me, where I was manic off my head. I was out of control.

I went to a therapist when my school suggested it to my parents. The therapist took one look at my behavior and referred me to a psychiatrist, a loud and overbearing man who listened to me talk a mile a minute for fifteen minutes, heard my symptoms, and pulled out a giant prescription pad. I started taking the drugs he gave me but received no explanation about what being bipolar really meant. He never explained what behaviors were unusual, or what could be attributed to the illness, or any coping skills or resources to better understand my situation. He gave me pills and saw me every two weeks. I knew almost nothing about what was going on with me but was even enough to realize I needed more information.

So? I went online.

Because my family didn’t know much about bipolar disorder and my doctor wasn’t telling, I learned a lot from the internet. Those were the wild and wooly early days of the internet, when it was the 90’s and everyone was in AOL chat rooms and the world was a wacky, wacky place. It was on the internet I found a community of roleplayers that eventually led me to the career I have today. It was also where I got a LOT of bad advice about mental illness.

I read a lot of stories about people being overmedicated or given the wrong medication. I heard stories about people being committed by their families if they didn’t hide what was wrong with them. But I especially came across the same story over and over from people who had been medicated. “If you go on the drugs,” they said, “the creative drive goes away. You’ll lose that spark inside you. If you want to be an artist, stay away from medication. It’ll kill your art.”

I didn’t believe it. I was taught doctors were to be trusted. And besides, I knew I needed help. So I took the drugs the doctor gave me and fell into the worst confluence of events you could imagine. Because the medication the doctor gave me DID kill my creativity. It also made me sleep too much, have no emotions whatsoever, destroyed my memory, and made me gain tons of weight. And every time I brought this up to my doctor, his answer was to add another pill to balance out the others or up my dose.

mental-health-1420801_1920I didn’t realize it until later, but I had a bad doctor. What I did know was at the height of this medicine dance, I’d spend my days sleeping, or staring at a television, and feeling nothing at all. I couldn’t even cry. But maybe worst of all, I struggled to create. I couldn’t find that spark inside me like I used to, that flying feeling that gave me inspiration. In the moments when I could feel something, it was the overwhelming terror of going back into that stupor once again.

This went on from the time I was seventeen, when I was so messed up I dropped out of high school, until I was nearly 19. In between, I struggled to get my GED so I could at least get into college and proceeded to flunk there too due to the medication’s impossible weight on my mind. I went through so many ridiculous emotional issues I can’t describe, but all of it was through a curtain of medication so thick I can barely pull up memories from that time.

The times my emotions would push through was during what I discovered later were hypomanic phases, mood swings so strong they butted through the haze and made me wildly unstable. All the while I struggled to get my life in order, and every time I did, it was under a fog of badly managed medication, or through the adrenaline of mania so strong I could barely function. I didn’t understand I was badly medicated, of course. All I knew was everything was falling to pieces, all the time, and I couldn’t feel a solid, real emotion long enough to care.

So in 2002, in one of those moments of emotional lucidity, I made a decision to stop taking my meds. I suddenly thought: the internet is right, this is a horrible, horrible mistake. I trusted my experience and my terror and I stopped taking my meds.

And well, to quote one of my heroines from the time, Buffy:

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What followed were ten years of the roughest, rockiest, unbelievably manic, altogether difficult experiences of my life. I had bouts of going back on medication, but would always stop for one reason or another. I’d make excuses but each time it was the same thing: I convinced myself I didn’t feel right on the medication. That I couldn’t feel that creative spark I so relied on as part of my life. I was afraid of going back to that medically-induced haze I’d been in before. I hid from it and kept riding the tornado, every day. And like any tornado, my instability left chaos and destruction in its wake.

I can’t say I regret those ten years. They taught me a lot. I regret a lot of the horrible decisions I made, the people I hurt, the situations I got into where I got ripped up myself. I have memories I’ll never forget, instances of realizing too late I’d gotten into something because of my mania that led ultimately to disaster.

But I remember the creative highs. The way I could just fly like the wind and produce 12,000 words in a night. How I could map out entire novels, series of books, all the things in the world I thought I could create. I wrote papers, read whole book series, stayed up for days on end, played role-playing games from morning until night, and never, ever saw anything wrong with where I was in life. Because I was living that artists life and I thought, hey, this is me. This is who I am.

I know now the truth: that was the illness talking. The living high on life, throwing caution to the wind, tornado voice? Is the manic voice. And unless tempered with medication and coping mechanisms can lead to disaster.

From 2002 until 2012 I remained largely unmedicated. And those ten years are, in hindsight, an unspoken cautionary tale of someone not flying, but falling without recognizing the drop in altitude. A tale of someone on a corkscrew through rough weather, catching fire all the way down.


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I went to grad school in 2012 and thank god for so many reasons that I did. It’s not even my education I laud when I think of those years, but a single day in November 2012. I’d only been in classes for two months and already I was starting to lose it from the stress. The day I broke down with a massive anxiety attack after a critique from a teacher, hiccuping with tears and hyperventilating in a bathroom, I walked across the street to the health clinic and got an appointment with a mental health counselor. There, a very nice man named Bob talked to me about my experiences, about what I knew about bipolar disorder.

Bob told me some truth about where I was at and what I needed. He said he was surprised I’d gotten as far as I did going the way I was. He listened to my fears about going on meds and what had happened in the past. Then he calmly explained how he was going to give me medication and we’d work together to find what worked.

The first day I took medication, I woke up in the morning and the tornado was quieter. Not quiet, but less a twisting funnel of noise and more of a loud echo. I called up someone who was then a friend (who had experience with the medication I’d started taking) and broke down crying. I asked him: is this what normal felt like? I had no idea it would get even better.

Six years later, I’ve never been off my medication a single day. And I’ve graduated from grad school, survived a brain surgery and being diagnosed with two serious chronic illnesses, ending up using a wheelchair, running my own business, becoming a writer, and too many personal ups and downs to count. Each of them I tackled with a surety in myself I never could have before, because I was no longer screaming through a tornado all the time. More importantly, I’ve spent those years creating games and writing work I’ve made with deliberateness and careful consideration. When I create, it was no longer controlled falling, but dedicated flight on a controlled course. Well, most of the time.

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I won’t say everything became perfect after I started medication because I won’t let blogging make a liar out of me. Being bipolar is a constant system of checks and balances. These days, I fight against needing my medication adjusted a lot, against depression and anxiety, mania and hypomania. I still end up flying some days, sometimes for days at a time, because as time goes on the body changes and you have to adjust to new needs, new doses, new medication.

Coping mechanisms change, life situations go ways you never expected, mania and depression rear their ugly head. But the day I went on medication was one of the greatest days of my life, because it was the day my creative spark stopped becoming an excuse to keep putting up with an illness that was killing me.

I did some research online (now responsibly!) about artists who were known to have fought with mental illness. Google it some time and it’ll be a stark look into some suffering for art you might not know about. People know about Van Gogh, but what about Beethoven and David Foster Wallace, Georgia O’Keefe and Sylvia Plath, Goya and Cobain, Robin Williams and Amy Winehouse. I did research and discovered artists like Mariah Carrey, Demi Lovato, Catherine Zeta Jones, Vivien Leigh, Russell Brand, Linda Hamilton, and of course Carrie Fischer all have/had bipolar disorder. Their stories, their struggles, are well known.

I read books about people theorizing about the connection between mental illness and creativity and shake my head. I don’t need to know the connection, because if there is one, it doesn’t matter to me. I take my medicine and work my craft at the same time because I don’t need to suffer as an artist. I don’t need the mania to take flight and reach inspiration. I can do that on my own.

 

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So speaketh the General, the Princess, Carrie Fischer

 

Mental illness and the struggle against it is one I’ll tackle for the rest of my life. But to quote Hannah Gadsby: “There is nothing stronger than a broken woman who has rebuilt herself.” The day I started on my journey to getting better by taking medication, by denying the world my suffering and instead gave myself permission to live healthier while making art, was the day I started rebuilding myself into the strongest version of me. Every day, one more brick, with every word I write, I build myself higher.

And so I offer a special thanks to Hannah Gadsby, and her brave “Nanette,” for reminding me of how important that choice was to my life. For reminding me I owe nobody my suffering to make what is precious to me, and that a creator doesn’t need to push aside their own mental health to be hailed as an artist. Thank you, Hannah, for your strength. May you find your inspiration wherever you walk.

This week hasn’t exactly been a fantastic time for me. Losing a parent can really make you get stuck in a maudlin, even slightly dark frame of mind. So it’s no secret that seeing photos coming out of Hurricane Harvey of elder folks near drowning in a nursing home due to lack of evacuation and inability to move well put me in a foul mood. It also got me thinking of conversations I’ve heard over the years about disability and the end of society.

Stop me if you’ve heard this one. You and your friends are sitting around and having some beers, and the conversation turns to the apocalypse. Maybe you’re watching The Walking Dead, or reading Divergent, or even going to your favorite post-apocalypse live action roleplaying game. But in between talking about what happens if Daryl dies on the show and exchanging larp armor suggestions, someone inevitably brings up what they would do in the event of the apocalypse. Doesn’t matter what the apocalypse cause: zombies, an outbreak, Donald Trump. Everyone gets to play the “what would I do in the case of society’s end” game.

I used to indulge in this game myself with my friends. But these days, when the subject comes up, I get very quiet. Because there’s only one answer:

I die.

I’ve read a lot of apocalyptic fiction in my life. From The Stand to Alas, Babylon, I’ve gone through the gamut. It’s a fascinating genre, really, considering what the fall of our civilization would do and what would happen to our plucky band of intrepid protagonists. How would they struggle? Who would survive? I used to identify with the hard-working protagonists, enjoying their constant battles and sacrifices. I, like so many others, put myself into the perspective of the struggling hero. I never thought I’d be one of the people left behind. The reality is, however, I’d be one of those who probably perished in the first few days/weeks/months, the footnotes in the Roland Emmerich movie who isn’t even in the credits with a name, who stares at the incoming giant wave or alien attack with the defeated, accepted resolution that this is the inevitable end.

As a disabled woman, disaster epics, apocalypse fiction, and post-apoc tales aren’t a vicarious thrill for me anymore. Theoretical zombie apocalypse escape plan BS sessions with friends aren’t amusing anymore. They’re an exercise in facing my mortality.


I grew up thinking I could handle anything. I was a young woman who largely lived out of my backpack, ready to grab it and go on a regular basis. When I read about characters in end of the world stories, like The Passage, The Road, Swan Song, or any of the countless others en vogue for the last thirty years, I always put myself into the head of the protagonist. I thought in their situation, I’d strap on my best sneakers, grab supplies, make sure I had my friends and cat food, and survive, me and my cat and my friends/family, together.

The reality of this vicarious thought exercise changed dramatically as I developed serious health problems. Chronic health issues like mine require continuous medical care, including a regiment of medication three times a day. Prescriptions, of course, run out, and when the corner pharmacy has been annihilated by a horde of zombies, there’s no more medication to keep me alive. Within days of running out of pills, I’d end up in some serious trouble. A lack of my painkillers would send me into serious, dangerous detox, while the lack of my endocrine medication would lead to a complete collapse of body systems. Within days, I’d be suffering. Within a week, I’d probably be dead.

And that, dear readers, is without considering the difficulties of locomotion for me in a wheelchair during a societal breakdown. I have difficulty navigating the crowds at New York Comic Con, or walking through New York City due to potholes and breaks in the sidewalk. Imagine off-roading in my wheelchair during a hectic evacuation, either pushed by one of my friends/family/a stranger or riding in the electric wheelchair until the battery runs out. I think about the protest I went to after the Eric Garner shooting, where we marched up the middle of 6th avenue. Two buses blocked our way, and three people had to stop to lift my wheelchair over the tiny gap between vehicles. Such a small thing, but in an emergency so deadly.

the-standThis personal look into how reliant I am on society to stay alive has been an eye-opener for me. In a world were destabilization is so much closer than we ever thought possible, I look for solace to literature to relax, and realize how many of the narratives I enjoyed before leave a bitter taste in my mouth. I reread The Stand and came to Stephen King’s chapter where he outlined all the people who died in the collapse of society post- Captain Tripps. And after so many of them, he wrote: “No great loss.” It always gave me the shivers. I’d be one of those people, probably, slowly dying in the face of the end. No adventure to go meet Mother Abigail. Just toodles, and hoping my life didn’t earn me the “no great loss” title in the end.

And so it brought me back to the inherent problem about post-apocalyptic narratives: they are, by nature and design, ableist in the extreme. Apocalyptic fiction doesn’t just embrace the erasure of the disabled and medically compromised, it normalizes their obliteration. It presents stories where we’ve re-embraced survival of the fittest as the only moniker and lionizes those who overcome hardship through leaving behind the injured and ill.

Worse, these stories accept the death of those who are disabled as not only the norm, but as a heroic sacrifice to the survival of the healthy, a gift the disabled and ill can bestow on their fellows. Most of these stories have at least one or two examples of people who commit suicide to keep the disabled or ill person from becoming a drain on resources, or to keep them from suffering too long. While people battle furiously over things like doctor assisted suicide in the real world, they’re willing to accept disabled folks taking themselves out of the equation as an inevitable, even noble, deed in society collapse fiction. And it says something very eerie about how people look at the disabled in these stories:

In a stable society, the disabled are tolerated, if not welcomed. In the face of disaster, they are a liability, and one to be excised for ease of the able-bodied.


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There are exceptions to that narrative, stories that stand out for the characters willing to stand up for those less able. One of my favorite scenes from the first season of The Walking Dead comes when Rick and his band of friends encounter what they first believe to be a group of thugs in Atlanta. The scene is uncomfortable in that Rick and his (mostly) white friends immediately size up the other group, made up of mostly people of color, as a threat, with the narrative implying they believe they’re gang-bangers and criminals. (They’re known as the Vatos gang).

 

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Addressing casual racism AND ableism. Why I fell in love with The Walking Dead. 

 

However, the story flips the whole thing on its head when we discover the ‘thugs’ are actually protecting a building full of the elderly and infirm. The Vatos are cooks, janitors, and family members of the elderly who refused to abandon the patients when the able-bodied staff fled. They are willing to face the hordes of the undead to protect the elderly who cannot flee easily, even in the heart of besieged Atlanta.

 

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Logan cares for Professor Xavier despite both physical and mental health issues. 

This caregiver narrative is often absent from apocalyptic fiction, as the notion of care of those less able is relegated to characters deemed salvageable or valuable to society. Protagonists will focus on the rescue of children over those who are disabled, seeing them as the future of society, while those who are injured or disabled might be a drain. Only those disabled characters who are seen as highly valuable are fought for and preserved, such as in the case of Mother Abigail in The Stand, wheelchair-bound Vriess in Aliens 4, Professor Xavier in Logan, or even Bran in Game of Thrones (which can be considered an apocalyptic tale considering the White Walkers invasion). These characters require effort to be expended to keep them alive but are almost always preserved only because their abilities are deemed too highly valuable to lose. Otherwise, care is often withheld or deemed a drain.

 

 

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Furiosa: the heroine we need and deserve

What’s often frustrating in these narratives is the way adaptive or assistive devices are treated, as if they are equally burdensome and do not allow characters to navigate the world with greater ease. Characters who could continue to be included in narratives are often set aside or sacrificed because other characters don’t even bother to seek out assistive devices like braces, crutches, or wheelchairs. This makes characters who utilize such devices so important in fiction. A prime example of a character whose assistive device is included but never overly emphasized is Furiosa in Mad Max: Fury Road, whose missing arm is replaced by a metal one. She is a prime example of a disabled heroine who is not only not marginalized, but who thrives as the movie’s protagonist.

 

 

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Hershel took over Dale’s amputation storyline on the TV series after Dale was killed the previous season. 

I particularly appreciated Dale in The Walking Dead comics for this reason. Originally able-bodied when he joined Rick’s group at the beginning, Dale (spoiler alert)  loses a leg during the course of the flight from the zombies, and though it gives him trouble, he remains a part of the group. (In the television series, the storyline is transplanted onto Hershel). Seeing someone with mobility issues still included as part of the group as opposed to being discarded was a major sticking point for me in loving Kirkman’s comic and eventually the TV series.

 

 

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Raven in the Arcadia camp post-injury.

Another fantastic example is Raven from The 100. The former space-dwelling engineer becomes badly injured during the course of the show, her leg and back permanently damaged. Though she can walk with the help of a leg brace, she is slowed down and in constant pain. Raven struggles with her new challenges, considers ending her own life, and ultimately faces her new disability status with a grim finality, realizing that at any moment she could lose her life due to her limitations. Still, she survives each season with determination, supported and bolstered by her friends, who do not let her give into depression. In fact, few characters in the show are as resourceful or vital as Raven, who is supported by others in her role in the community. Raven is a wonderful example of a narrative that embraces the disabled, rather than obliterates them.

 

Yet there are more stories which sweep away the disabled than embracing them. And what’s worse, the idea of the disabled being abandoned is lionized, given a sort of solemn acceptance. It’s known the disabled need to be forgotten, left behind. The able-bodied in the stories often embrace how painful and awful it is to lose someone because of their medical situation or disability, but largely move on with a sense of acceptance. It’s accepted, of course, that the fittest move on, and don’t try to waste resources on their differently abled friend. There are countless scenes where someone must be sacrificed to help the rest of the group survive, and more often than not it is the cruel “I tell it like it is” character who points out the disabled/ill person as a drain on resources who should be chosen. And though the others moralize, in the end, they often agree.  The message becomes clear: the differently abled are expendable.

More often than not, these scenes include some kind of noble sacrifice moment, where the disabled/injured/ill person looks deep into the heroes eyes and asks to be left behind so they can help the group. They stop fighting, stop trying to survive, ending the drain they put on resources with solemn acceptance, the last heroic gesture they can make. This is often mirrored in zombie stories when a single person is bitten and they calmly pick up a weapon to end their lives, the generous actions of a person trying not to inflict their sickness on others. Yet while some stories have heroes fighting to save the zombie-infected person, few have heroes fighting to keep their diabetic friend alive.

 

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“Leave me, Master Luke!” Even C-3P0 in Star Wars has that disabled martyr complex. 

 

An example of a scene that faces down this issue comes from The Stand. King introduces Stu Redman as our everyday hero, a caring soul who becomes the heart of the survivors on their way across the country to meet the magical Mother Abigail. In the first scene of Part 3 of the TV series, Stu is elbow deep in a man’s guts, trying to remove a burst appendix on a cold concrete floor. Stu is no doctor but does his best without anesthetic and with nothing but a medical textbook to guide him. And though his patient dies, Stu at least attempts the operation rather than let the ill man die without a fight.

 

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Stu attempts an appendectomy in The Stand Part 3. 

 

This instance, however, just like the zombie bite, is an example of an onset illness, meant in the narrative to convey the fragility of human health when there are no hospitals, no safety nets for the often changeable human condition. But more chronic, ongoing illnesses are treated much differently in these stories, often signaling an accepted death sentence with no attempt at treatment.


Physical disabilities might be badly treated in apocalyptic fiction, but equally marginalized in these stories are those with mental illness. Already often badly used in fiction, the mentally ill are often portrayed as not only a drain on society but a danger to those around them. Those with mental illness or neuro-atypical status become an outlying wildcard in the apocalyptic survivor stories, playing the role of simple sidekicks, quirky but unstable comedic relief, or else hampering burdens to the survival of the group. While these stories highlight the heroes often suffering from things like PTSD and depression, rarely are conditions like these treated as illnesses to be addressed. Instead, they are dangerous shifts in personality to be treated with “tough love” scenes as other survivors cajole the character to get over it, get stronger, move on. Those that don’t are often killed off, a victim of their own emotional instability.

Those portrayed with chronic, less environmentally-contributed mental illnesses are usually treated far worse in the stories. Apocalypse stories often include someone with mental illness to throw in the magical crazy prophet trope or the unstable person who will endanger the group. Rarely is their mental illness addressed as treatable, or even manageable, and the ‘crazy’ character often becomes a casualty of the story, perishing due to losing control of themselves to their ‘madness.’

 

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Pilar McCawley as played by Linda Hamilton

A well-explored version of this story happened in the TV show Defiance. Set in a post-alien invasion Earth, new frontiersman Rafe McCawley tells his children their mother Pilar died rather than admit he left her behind due to her mental illness. After society fell apart, Pilar could no longer get treatment for her bipolar disorder and became erratic. Rather than face handling an unstable Pilar, Rafe takes his children and leaves. Pilar survives, however, and later comes back to reunite with her family. She becomes a villain of the show, however, as her bipolar disorder makes her do inappropriate things like, oh, kidnap her daughter’s half-alien baby. But while the show attempts to show characters empathizing with Pilar’s situation, it also showcased the show’s protagonists turning on Pilar, calling her crazy and eventually killing her while she was in the throes of her mania.

 

Her death in the show too closely mirrored the violence so often perpetrated on the mentally ill in our world when they act out inappropriately. And this is one of the good examples of well-explored mental illness characters. Many others are far, far worse.


It’s no secret that fiction of any kind reflects the anxieties of the times. In the 50’s it was the body snatchers, mirroring the fear of invasion and infiltration by the Russians. In the 70’s and 80’s, it was concerns over rampant consumerism and wanton behavior that bred our slasher film fascination, and the 2000’s are all about fears of society collapsing in the face of global terror and societal instability. Yet what does it say about our society as a whole when our fiction is not only about people trying to survive such collapses but embraces survival of the fittest as the rubric for that fiction’s heroic journey?

Too often the disabled are set aside in our society, considered burdens and drains on resources. Yet while most at least show basic discomfort with the marginalization of the disabled, our apocalypse fiction envisions futures where the disabled not only don’t exist but go heroically to their deaths so as not to be a bother in times of trouble. The concept smacks of an insidious undercurrent of near eugenics-level categorization of the disabled and chronically ill most would find distasteful when called out in the open. No one wants to admit they accept the disabled as a burden. Yet there it is, in the stories about our most difficult times. In those stories, the disabled are deprioritized and erased from existence, sacrificed at the feet of the able.

I’ve stopped indulging as much in apocalyptic fiction lately. My own medical status has made it difficult to enjoy stories in which I would be annihilated pretty quickly, or else considered selfish for trying to survive. Instead, I look for stories like The 100 when people with disabilities are equally valued and fought for, and not just treated with pity but embraced as integral to the continued survival for their skills, experience, and contributions to society.

I envision if there was a zombie apocalypse, I’d be there, whacking zombies in the head with something and then zooming along in my wheelchair until my medicine runs out. There’d be no noble “save yourself!” from me unless necessary due to circumstance, and not because I would be a ‘burden.’ Instead, I’d strive to be a comfort and an ally to my friends and those around me, contributing to the whole as I do in my everyday life, right up until the end. Would that the fiction I consume had the same confidence in me as I try to have in myself.

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It’s a Friday night in Jersey City, and I should be at a larp.

Instead, I’m in a hospital bed in the local emergency room with an IV in my arm. My roommate Craig is sitting with his iPad nearby. We’re joking over the latest antics from the White House and the recent defeat of the SkinnyRepeal. “I get to live another year,” I joke. But it’s no joke for me. I massage my arm and try to ignore it’s stinging. The nurse came in and tried to get blood a little while ago, but my veins are so shallow from dehydration they couldn’t find a good one to tap. It took six tries before they could get the blood they needed. I’ll have bruises in the morning.

“I’m just glad I finished all my work before today,” I say. The nurse comes in to wheel me to get an ultrasound of my stomach, but I’m pretty sure I know what they’ll find. Nothing. Because what’s happening is all part of the glorious roulette wheel of fibromyalgia symptoms plus a great big dose of dehydration.

I hadn’t eaten in twenty four hours, was unable to even keep down water. By the time we made it to the hospital, I was seeing spots and couldn’t stand well to transfer from my wheelchair. And the muscles spasming up and down my back, neck, and shoulders had locked up into a single, solid knot.

And all I could think about was: I could be at a larp right now. Or I should be writing.

Welcome to the life of a chronic illness creative.


I was diagnosed with fibromyalgia when I was twenty six, but I’d been experiencing symptoms for years. I’d have muscle pain, lock ups, generalized fatigue we couldn’t figure out, and brain fog that would knock out my concentration. I’d sleep for way longer than I should and had pain up and down my back, shoulders, arms, and legs. Doctors checked me for just about everything. I’d been hit by a car in 2005 so most doctors figured it was just after-effects of the accident. It wasn’t until I saw a particularly canny pain management doctor that I got the right diagnosis.

People with fibromyalgia often have trigger points of pain where the fascia and the muscles meet (or at least that’s what I was told). My pain management doctor walked over, poked four of those spots, and watched me nearly leap out of my skin.

“Ding ding,” he said, “we have a winner.”

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Kicking ass at Dystopia Rising: New Jersey

Within days, I was in treatment. I was getting medical massage, got acupuncture, was trying out the latest fibromyalgia medication, and getting pain medication to become functional again. And I did. For a little while. I went back to school, went back to work. I graduated, kept working eight hours on my feet at Apple, kept LARPing. I would run through the woods on my weekends, ignoring the muscles that hurt so bad I could barely see sometimes. Sure, I’d fall over sometimes and throw up from the pain. Sure, I’d get muscle-tension so bad it triggered headaches so violent I would be in bed for two days. I had doctor notes for work. I exercised. I took care of myself.

 

But fibromyalgia can only be treated, not cured. And as time went on, it got worse.


Let me tell you what it’s like to try and write while having fibromyalgia.

Imagine you got in a fight. A knock-down, drag out fight with someone. Doesn’t matter who won in the end, but you came out the other side. You’re not badly hurt, but every muscle is hurting from the strain. You feel bruised in places so bad it burns. And the rush of adrenaline is wearing off, so the awful exhaustion is kicking in, so thick you want to sleep for a month. And inside your head is that foggy feeling that says you need a very long, very restful nap, just to make all the pain go away.

That’s fibromyalgia on a medium day.

On a bad day, you lost the fight, and there are places on your body that are screaming.

(If you’ve never been in a fight, substitute running up and down a really steep hill with heavy bags of groceries and a giant backpack like ten times in the heat. I think it about equates.)

Imagine then asking your body to sit in one place, at a computer, and be creative.

Or worse (for me), run a larp. For those who aren’t familiar, running a larp is half being a ringmaster and performer, half logistics manager for an improv immersive theater performance, half writer-on-the-go, and half team manager. Now try doing it while your muscles are screaming at you to just sit down, shut up, go to sleep, just stop, just stop, just STOP.

Sometimes, you just have to stop. Sometimes, you can push on. But one thing is for sure. Over time, it gets harder and harder to push. And you’re always so damn tired.


My health got worse, over time. I developed Cushing’s Disease, a disease of the endocrine system that spawns hormone-producing tumors in your pituitary and adrenal glands. I had a pituitary adenoma (that’s a tumor) we had to remove as soon as it was found. We named it Larry, and Larry was a sonofabitch. Larry screwed up my endocrine system so badly that three and a half years later, I’m still recovering. My body in fact may never recover fully, and I’ll need to take hormone replacements for the rest of my life.

Cushing’s Disease also makes you gain weight. Point of fact, it’s one of the ways they find out you HAVE the damn thing. Now I’d never been a small girl, but gaining 180 lbs in nine months is unreal. Falling asleep nearly face down at my desk, struggling with blinding migraines, all of it led them to Larry. I had a brain surgery that laid me out for over six months. I was tired all the time. I could barely get out of bed.

I continued as a freelance writer. I graduated NYU. I wrote a book. I looked for work. I ran LARPs. Because life wasn’t waiting for me to get better, and I needed to work. Because I’m a writer and a larp designer and my mind won’t slow down because my body does.

I got a wheelchair to get around. I said goodbye to larping in the woods for a while.

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It takes time to adapt to failing health. Your mind wants to tell you that you’ll recover soon, that you’ll go back to the way things were before. You’ll remember the glory days, the days when you could run, when you could fight, when you could walk across Manhattan with friends all night, talking about absolutely nothing, for hours on end. You remember hiking up a mountain, or backpacking through a country. You remember waking up in the morning without pain.

Your mind is a great denial machine, to help you stay mentally healthy. It shields you from the enormity of what you’ve lost. But one day, while you’re planning this grand trip you just know you can do because hell yes you can, you twist some way when you’re sitting down, and your back explodes in pain. And then you remember your limits. And you remember those days of doing things easily, of racing through the woods in a larp or even getting up a damn flight of stairs with ease, and know they might be over forever.

Well, the ease part is over. Whether or not you go and do it anyway, though, that’s up to you.


I got rolled into the MRI room. The technician had to do a lot of imaging, so we got to chatting. She asked me a lot of questions about my medical situation. I had to give her the full run-down, which is a long list of medications, medical issues, and treatments. When I was done, she stared at me.

“You’ve got all that memorized, huh?”

I shrugged. “I’ve got practice.”  When you’ve got chronic health issues, you’ve got to learn what’s up with you, so you can talk to doctors as an educated patient. I came prepared for speaking to my doctor with all my medications memorized or in my bag, the full run-down of what’s been going on, and the doctors to contact if more information was needed. Par for the course.

We chatted for a while longer. She asked what I did. When I told her I was a game designer, she gave me the same response plenty of people do. “Man, my __________ (insert relative here) would love you! It must be a great job!”

And I always say the same thing, “It’s a hard one, but I love it.” Because I do. Every day, I get up and I know I’m working in the creative field I love. I get to write words and people read them and enjoy them. I help bring books to development that will give people joy. I run larps and see people get excited, and get immersed, and come out loving what they’ve experienced, the stories they lived through if only for a little while.

I think about my deadlines as I’m lying in the MRI room. I’m thinking about the larp I’m writing, the books I’m developing, the projects I have planned. I think about my novel and the few chapters left to the end, dragging on and on because I’ve just been so stressed and exhausted.

I am exhausted. I’m always exhausted. And I’m always, always mad. I’m furious at my body for giving out on me in the prime of my life, of how it fights me for the littlest things these days like going up a flight of stairs or reaching for something in a store aisle. How I wake up in pain that robs me of a good night’s sleep. How I have to take medication just to get through the day, especially painkillers so often demonized by others for their addictive properties.

I’ve been on those painkillers for six years under a doctor’s care, and never deviated from treatment, never taken more than I was supposed to. But I’ve still had people in my creative field try to slander my name by calling me a junkie. I think about life without pain management, about the screaming muscle pain and the blinding migraines and the fatigue from just fighting the pain. A junkie, huh?

And people wonder why I’m always so pissed off. I do a lot of meditation, a lot of spiritual exploration. People tell me I should do yoga, as if yoga will cure things. People suggest a lot of things. “Have you just tried not thinking about it?” is my favorite. Or, “I heard if you just go vegetarian/paleo/Atkins/low carb/stand on your head, you’ll feel better.” Or the old favorite, “You’re always sick all the time.”

Yes. Yes, I am.

I practice a lot of that anger management meditation to deal with dumb-ass questions, concern trolling, unsolicited medical advice, inaccessible venues for my wheelchair, and unapologetic discrimination against disabilities. I need a lot of patience. There’s a lot of bullshit people deal with when they’ve got chronic disabilities, especially some that are invisible. You need a lot of patience explaining your needs to people around you in everyday life. At airports, conventions, at the corner store. Some people make it easier. Others make your head just plain hurt.

I practice a lot of deep breathing and remember that old saying: oh lord forgive them, they know not what they do. And even if they do, anger is only some bricks in my already overflowing backpack. I do my best most days. Most days.


But I can’t do that best alone. The days of being able to just bear up and do things by myself have sadly vanished. And because of that, I have to rely a lot on the kindness and support of others around me. It’s not a natural state for me, to ask for help. Anyone who knew me in my twenties would know I was always taking on too much without delegating, without even letting others know when I was in trouble. It’s an ongoing challenge. Once I got sick, however, that went out the door. Some days, getting food can be a challenge, or wheeling down to the corner coffee shop, or out for pizza.

I have good people in my life. Amazing people. Brilliant people. We travel together to conventions, to concerts, to days out. And some days, that includes pushing my wheelchair, snagging me food, making sure I sleep, I eat, I drink. I push too hard and fall over, and they’re there to make sure I don’t fall. Without them, I wouldn’t be able to survive, let alone be creative.

I remember every day they give me strength. I remember to thank them as often as I can. I am afraid I’ll wear out my welcome with them. I’m afraid they’ll get tired of the sick friend, who makes it hard to get places, who has a wheelchair. I get concerned I’m asking too much when I ask for help. I am afraid I’ll lose them.

I have lost friends. Friends who didn’t get it. Friends who called asking for help ‘being selfish.’ Friends who just drifted away because I couldn’t come out as often, couldn’t be there. It was painful. It hurt. But people drift out of our lives. And I learned to be more thankful, to let people know how much I appreciate things more, both in my everyday life and at work. People throw around the word blessed on Instagram and Twitter in hashtags, but that’s what I know I am. I’m blessed. And it fuels me to keep moving every damn day.


The MRI tech finished up what she was doing and got me ready for transport.

“You know,” she said, “you’re doing better than a lot of people with half of your issues. A lot of folks would have just given up by now.”

I blinked at her. “And done what?” I asked. “What’s my alternative?”

She started laughing. “See, that’s why you’re making it.”

As the attendant pushed my gurney out, I shrugged and said, “Nah, I’m just stubborn. They’re going to have to wheel me out of this life feet first.”


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My first Star Wars larp in college.

When I was sixteen, I was diagnosed with bi-polar disorder. A very brusque, uncommunicative doctor in Brooklyn sat me down and explained why I was so depressed and then utterly manic, why I was having trouble with suicidal ideations. He said the only way to get things under control was medication. He didn’t explain much about my illness, only that I was going to have it my whole life. That was eighteen years ago, and I spent most of my twenties struggling to come to grips with my mental health. I can only be glad I got it (fairly) under control before my health kicked out.

 

I get up every morning, and I take my medication. I feel no shame in talking about taking medication for anything that’s going on with me, be it chronic health or mental illness. These are everyday parts of my life, my reality. And I find no shame in seeking treatment for what is wrong, for what needs correcting so I can live a healthy, safe life. I take my mental health as seriously as my fibromyalgia or my Cushing’s Disease, maybe more. Depression, to be blunt, can kill you as fast as a mismanaged endocrine system. Maybe even faster.

The MRI tech reminded me of something I’d promised myself when I started the latest course of anti-depressants and mood stabilizers. I was just starting grad school and I’d been on and off medication for too long. I took my first dose of a new medication and within hours I was feeling better. I called a friend and asked him if this is what normal felt like, when the windstorm of mania in my head had calmed down and I could think straight for perhaps the first time in a long while. And I promised myself that day I’d take all that energy I used to use to hold onto being stable, a fight I sometimes only won by my fingernails, and I’d turn that to working and gaining my goals. To succeeding at my dreams, and never, ever give up.

They’ll have to wheel me out of this life feet first.

I keep that motto in mind every day.


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Me at the Women’s March on Washington D.C. in 2017

And some days, it just doesn’t work.

 

I woke up today and I’m fairly sure I’ll be asleep for a good chunk of the morning. I’m back from the hospital, and I was right. The doctors found a nasty case of severe dehydration (my medication makes me dehydrate pretty fast), some gastric issues, and a whole lot of fibro symptoms that masquerade as something more serious. (Ever get rolling chest, arm, and neck pains that squeeze the breath out of you? If those symptoms sound like a heart attack, ding ding ding. Now play the home game, “Am I dying or is it fibro?”) I lie down, thanking everything that looks out for itinerant writers that the ACA provides me with the insurance I need. I drink a ton of water. My body is still sore from the muscle spasms. I’m loopy from medication.

I have to work today.

I don’t have to. But my brain is itching to write. I wake up at 8AM and put hands to keyboard and write this post, not because I want to bitch about my health (although a little exposition to get out the feelings never hurt) but because I need to write. I need to. It’s a part of me as much as anything else, and so much more true to me than the pain from the chronic ailments. Because writing was here before I was sick and will go on through it all.

I don’t have to write today, then. But I will. Hell or high water, I will.


I’ve met a lot of people in the gaming and writing world dealing with any number of medical issues, any combination of chronic illnesses. I’ve seen people I know get knocked down by serious illnesses and terrifying diagnoses, or else stand with family and friends when they’ve had the same. Being sick or being a caregiver saps the hell out of your energy. It rips away from you the daily stockpile of spoons you have to spend (and if you’re not familiar with Spoon Theory, check it out here to understand more) and instead leaves you at a deficit that can wreck agendas, plans, even careers.

For everyone out there facing this, I see you. I see you struggling to get up in the morning to finish that game book on time, or to attend a convention no matter how much energy it will take. I see you fellow wheelchair buddies fight to get into accessible venues, or those with chronic issues seeking accommodations at events so you can participate. From creating quiet rooms for those with overstimulation to people advocating for longer breaks between events at conventions for proper self-care, and to every game dev and editor who recognize chronic health issues and are understanding, I thank you.

I see you and what you do. I thank you for making sure the games world makes room for creatives who are chugging along, trying to make it work. Who aren’t willing to give up the muse, even when sometimes the body is trying to give up the ghost.

Today, I’ll take it gentle on myself. I’ll try to give myself a wee break. I’ll curse a little at my muscles, still ripping me up with tension. I’ll pull out my edits and get back to work.

And I’ll take this day head on, until they take me out feet first. Because I know no other way.