We need to talk about “Dork Diaries.”

stigma

Dear readers,

I have not been this angry and unsettled about a piece of pop culture since the Fear VR: 5150 Knotts Berry Farm debacle of September 2016. This afternoon, I happened upon a post made by one of my Facebook friends regarding a book series called “Dork Diaries,” which is aimed at children (particularly girls) aged 8 to 14. The protagonist is a 14-year-old girl named Nikki Maxwell and her life as a middle schooler.

Before I get into the meat-and-potatoes of this post, I want to warn you that the following images contain extremely discriminatory language that some readers may find upsetting. All images were provided via a good friend of mine on Facebook who is also a mental health advocate and fights like hell against the stigma. I respect her deeply and am grateful to her for bringing this to my attention.

Below is the first image I saw regarding this series. 

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Let me begin by stating that I have not read any of the books in their entirety and had no idea they even existed until just a few hours ago. I also hate that by writing this post, I am giving this author more attention. However, I cannot let this issue go unaddressed for a number of reasons. For the sake of brevity, I’ve made a list:

 

  • Stigmatizing language hurts all of us, and we need to knock it off. Seriously
  • The age range AND gender at which the books are targeted is highly disturbing, given the nature of the content. I’m not talking about the whole “celebrities being seen without panties but not phones” bit that many reviewers have cited as problematic.  

 

 

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I’m talking specifically about the use of phrases such as “totally SCHIZOID!” etc. to describe the narrator’s peers. (I am also not 100% sure what the author means by “acting schizoid,” and I don’t think she does, either.)

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Dropping “RETARD” (please note the caps), even as a self-descriptor, is unacceptable. Come on, people. I thought we were better than this. The sad part is, the author could have gotten rid of the problematic language without negatively affecting the rest of the content. Cutting it would have actually made the book better. I’m wondering where the editor was in this process, if there even was one. I’m wondering why we still live in a world where this kind of thing manages to slip by largely uncontested.

 

  • Where did the narrator (a 14-year-old girl) learn this language? Why does she think it’s okay to casually throw around such hateful, derogatory terms? Why isn’t this addressed in the book? And more importantly, why did the author think it was okay to write this in a children’s book without any sort of disclaimer?

Kids don’t come up with “you’re trash because X/Y/Z” on their own. They hear it from somewhere else, accompanied by the implication that it’s acceptable to dehumanize others for being different and perpetuate that toxicity ad infinitum. And this is a powerful reminder that none of us exist in a vacuum.

We can’t bubble-wrap our children, nor should we. There will always be bullies. There will always be stigma. But what we can do–what we must do–is educate ourselves and our children about the glorious range of people who share this planet with us. We must teach them accountability and respect. We must teach them that they are okay just the way they are and that the limitless expanse of diversity makes the world a far more beautiful, interesting, and magical place to live.

I am not in favor of censorship. What I am in favor of is self-awareness and recognizing when you’re about to fly off the rails and discriminate against an entire group of people in one broad stroke. Anyone who steps into the public eye has a duty to ensure that they are not causing harm to others. Context is also important. While this type of language would be a bit unsettling in a book written for adults (though I would take less issue with it given the audience and their assumed level of maturity and awareness), it is absolutely disturbing when it appears in a book written for children.

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As a writer, an advocate, and a budding therapist, this sickens me. It’s lazy writing designed for shock value, to laugh at and “other” people who are living with mental illnesses and disabilities. Rachel Renée Russell’s writing is irresponsible at best, though I would go so far as to describe it as dangerous because these attitudes are dangerous. These attitudes have gotten people killed.

The one silver lining I can see is that a parent could pre-read the book, then use it as a jumping-off point for a discussion with their child (or children) about why such language is hurtful and not okay to use when describing another living, breathing, thinking, feeling human being.

Here’s an easy way to tell if you’re about to say something awful about another person. Take whatever adjective you were going to use–let’s say “schizoid,” for the sake of continuity–and replace that word with a group that has been historically discriminated against (but that society has collectively acknowledged was abused, stigmatized, and worse).

For example, the above passage would read “OMG! MacKenzie was acting totally JEWISH.” [Or “Black.” Or literally any other group that, when used as an adjective in a negative context, would make you look like a terrible person.]

That sounds bad, right? Does it make you feel really gross? It should. We may think we’ve conquered racism, sexism, anti-Semitism, all the other -isms…but we haven’t. We’ve barely even addressed them. All we’ve done is move on to another scapegoat, another bogeyman, another substitute that is slightly more socially acceptable but still conveys the level of disdain as older, more taboo slurs and epithets.

And what about the kids reading it who happen to have any of the conditions Russell has singled out in her books as targets of derision and malice? What happens when a child who has some form of mental illness or disability? How is a parent supposed to help heal the damage done when the hatred is right there in black and white for the child to see? The message sent by these books is that it’s acceptable to make people feel less-than because of something they cannot control.

And readers, you should never let anyone make you feel like less than you are, period. You are beautiful. Your brain is beautiful. You are strong. And we all deserve better than this.

With love,

One of those so-called mentally ill “weirdoes”

— J

 

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Shouting “STOP!” in retrospect (content warning: rape)

a cure for what ails you, abuse, personal experiences, ptsd, relationships, therapy

Hey readers!

I had a great, if intense, EMDR session this afternoon. I’ve mentioned X a few times before, especially in my last post, and he was the subject of today’s sessions.

I’ve mentioned before, in very vague terms, that I have a long history of sexual abuse. Those of you who have listened to the RISK! episode have heard me say it directly: I never talk about it. I’ve been to literally a dozen other therapists in the last eleven years, but due to insurance issues or money in general or whatever, I was never able to see a single counselor for more than a few sessions.

As a result, I am extremely uncomfortable discussing any of the rape-and-what-have-you in anything less than broad terms. I can vividly describe everything else–the physical and emotional abuse, what it did to me psychologically, how the effects have rippled through time and still mess with me to this day. But if you sit me down and ask me to tell you exactly what happened, to describe it? Then I clam up and can’t even say the word “sex” without looking at the floor.

I had to do that today. I had to lay out the details of a memory that I very recently had a flashback about. I had to describe how we were positioned, to talk about that rolltop desk and how I used to lean into it and stay absolutely silent because I knew if I made a sound or asked him to stop, he’d be angry. And when you’re in abuse-victim-survival-mode, avoiding that anger is pretty much all you think about. I just had to get through that moment and then things might be better. (This is called “conditional assumption” or “deferred happiness” and is extremely common in abusive relationships.)

I want to pause to make an important distinction here, since we are talking about rape and consent–by “had to,” I mean that my therapist (who we’ll call S from now on) invited me to talk about my flashback in very general terms: “Can you tell me what the flashback was about?” She never probed for details, and her sensitivity was much appreciated.

We began by identifying my negative false belief: He is raping me and hurting me but I’m not saying anything because “I don’t matter. I have to do this.”

She asked me, as is typical by now, to rate how disturbing I found that belief while I was thinking about the scene I’d described. Then, she asked what I’d like to replace that belief was (and how believable it was to me as I was sitting in her office, pre-EMDR). This is what I replaced that thought with: “I do matter, and I don’t have to do this.”

I’ve probably mentioned this before, but I prefer to use the hand buzzers for EMDR–I’m migraine-prone so the lights don’t work well, and because I have that thing where sudden and/or loud sounds in my left ear trigger an uptick in the dissociation. So, I relaxed (as much as I could) into the couch, a buzzer in each hand, and willingly stepped back into that moment.

It was like entering a time capsule. I was disturbed and amazed at how easily I could reenter the memory. I saw myself, leaned against that desk, slipping my fingers, one at a time, into the grooves in the wood as a distraction. My abuser–my rapist–was not there, only a strange, smooth grey nothingness behind me. It was like my mind wasn’t even going to let me go there, to see his face. I’m actually grateful for that. I imagine my mind saying, “Okay, so you have to relive this a little so you can rewrite it and feel better, but you do not need to see his face. I’ve got your back.”

I was standing in the corner of my bedroom, just at the foot of my bed, and looking across at that girl by the desk, that girl who was me-and-not-me. I saw our dresser. I saw the window–the light outside was, as in most of my memories of X, a strange grey-blue that could have been dawn, dusk, or midnight. In my memories, it is often all three.

S. stopped the buzzers and had me draw a deep breath, as is our custom by now. She asked what I saw, how I felt. Then we started the second round.

This time, the details were clearer–the way the yellow light cast shadows at the corner of the desk, the frayed edges of the area rug behind the dresser. I began to feel angry. I wanted to scream at him to get off her, to let this girl–this child–go. To stop filling her head with bullshit and lies.

I was 18. I’m 29 now. Looking back, I was a baby. I was coming out of this intense childhood full of abuse and anxiety and no one had taught me what a relationship was supposed to look like. The only relationships I saw were dysfunctional ones; later in life, I sought out and clung to what was familiar to me. Unfortunately, what was familiar was also rape-y and weird, which are two words that could pretty accurately sum up my life from ages 17 to 19.

I told S. about my anger. We chatted for a few minutes to decompress, then jumped back in.

This time, I was furious. I was screaming at him, telling him that I am a human being, not something to masturbate into and that I do matter. That I don’t need to perform for anyone. That I am not a dog that does tricks and licks its owner’s boot even after being kicked. 

That my body is mine, and that my ownership means something.

By the end of the session, I found the false belief, the “I don’t matter and I have to do this,” disturbing for a different reason. I find it disturbing that I ever felt that way. And above all, I find it disturbing that another human being was not only capable of doing that to me, but that he enjoyed it.

We’re going to pick up again next Monday. In the meantime, S. told me to keep yelling at him in my head. I left her office with a smile.

You know how in Dogma, Alanis Morissette plays God and absolutely destroys Bartleby with her voice? That’s how the scene with X is going to play out in my head from now on. I’m also picturing the final stanza of “Lady Lazarus” by Sylvia Plath:

Out of the ash
I rise with my red hair
And I eat men like air.

I am wishing you a wonderful week filled with ferocity, dear readers! Y’all come back, now, y’hear?

Reclaiming my body, or: ¡Viva la Revolución!

a cure for what ails you, abuse, anxiety, dissociation, memories, personal experiences, ptsd, relationships, therapy, three hopeful thoughts

Sometimes, EMDR can take a while.

This week, my therapist and I tried to pin down a common theme in some of my more disturbing memories of X. We essentially started freestyling at each other, throwing out possibilities and ultimately ending up…pretty stumped. She thinks it all goes back to what she calls “the rabbit hole”–dysfunctional patterns with my mother and my other relatives that began when I was a child and are coloring how I interact with the world even now, twenty-odd years later. We also had a really great conversation about body autonomy and ownership, and how I’ve been seeing myself as a commodity for so long and “going along to get along” for pretty much my entire life.

My existence has been defined by one thing: the need to protect myself at all times, to defuse all the bombs, to take all the right steps so I don’t fall into a crack or a lava pit or inadvertently provoke someone else’s rage. I make myself as pleasant and agreeable as possible because I grew up learning that rocking the boat meant someone screaming in your face.

I am a nice person, yes. The whole thing isn’t fake or some survival mechanism from long ago. I don’t see a reason to be unkind to people, when giving a stranger a compliment takes less time and brightens someone’s day. But I am gentle with others because I am so often afraid. As a child, survival meant being quiet, being kind; never confronting, never correcting.

My therapist and I have also spent the last few weeks working with my deep-seated body image issues. It’s a topic I don’t often talk (or write) about because there’s a mountain of shame that comes with it. However, I try to be transparent in my posts and other communication with you, readers, so let me bring you up to date.

My family-of-origin is weird in a bunch of ways. Even if you’re relatively new to the blog, you’re probably aware of this. But one of the most pervasive and insidious messages I received as a child was that my stomach was ugly and needed to constantly be “held in.” You know, like how you sometimes suck in a bit to zip up a new pair of jeans? Like that, except all the time.

Long story short, we were at Disney World when I was nine or ten and was wearing this cute little biker-shorts-and-crop-top deal, neon green and black. I thought I looked so cool with my white bucket hat, despite the fact that it was 95 degrees and I was wearing, well, a bucket hat. We were posing for a picture in front of some palm trees and one of the relatives who’d brought me on the trip poked my stomach and said, “Suck that in.”

Again: I was, like, nine or ten when this happened.

And I had been holding in my “gut” every day for the next twenty years. I was terrified to let anyone see me not “holding it in.” Even as a 90-lb freshman in high school, I still held it in. I was terrified of sleepovers–with friends in school, and with lovers later in life–because I knew I would not have complete control of my body and what it looked like while I slept.

It took two long, very difficult EMDR sessions, a ton of self-care, and lots of encouragement and positive feedback from my fella, but I am slowly letting go of the compulsion to suck in my stomach at all times. As I write this, I’m slouched over like an overstuffed possum* (thanks to our wedding food tasting this weekend!) and I do not care. I know no one here is going to judge me. I am comfortable that I am not some hideous trog if I’m not pretending like I don’t have organs in my abdominal cavity.

The way I view my body changes from day to day, of course, but the last week has felt effortless.

But this is only the first step. My body has never been truly my own. Over the course of my life, I have allowed others to pick at me like gulls on a whale carcass: this one takes my body but nothing else–they use my flesh and forget that I am human. That one only likes me when I’m not sad. This person takes for granted that I will always forgive them. And it goes on and on, the give-and-take-but-mostly-take that made up all but the last three or four years of my life.

Think about that for a moment. Twenty-five years of feeling vaguely “other” in my body, like I was driving a leased car. Mine, but not really mine.

And I have allowed–even willingly participated in–this parceling-out of me, of my body, of my mind, of my experiences. I have done this because submission means safety. If I don’t really care either way, I’ve long said, what does it hurt? Why not let someone else make the decision? Why even bother giving an opinion, if it will make this person happy?

It’s funny that I am just now realizing how dysfunctional this mindset is. Having those thoughts on occasion is natural. Having those thoughts form the basis for every interaction you have with another human being is probably not the healthiest way to go about this whole “life” thing.

Those patterns are why it’s so scary to have finally found a partner who wants all of it at once–even the parts of myself I find the ugliest and most shameful. I am learning that it’s okay to express my opinions, even if I’m not 100% sure the other person shares them. Wedding planning has, on the whole, been full of great opportunities for me to test out the whole “assertiveness” thing without the stakes being too high. For the first time in my life, I feel safe disagreeing with my partner because I know it will not immediately lead to a breakup or abuse.

So, my assignment moving forward is to nurture myself, to keep being me, to keep doing the things I enjoy without worrying so damn much about how it’s going to look or who’s going to judge me. I’ve been doing this, to some extent, for a while (my guy and a certain friend can attest to me publicly howling and barking like a dog through a bronze metal sculpture last summer). I vowed last year to make absurdity common in my life and to ask “Why not?” more often than “Why?” when thinking about doing something. I want to be freer. I want to feel that my body is my own. And most importantly, I want to keep being stable and happy.

Now that you know a bit more of my tragic backstory, readers, how many links have you been able to make between your early childhood experiences and the person you are today?

* This guy right here:

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We came home from the tasting and just kinda slouched on the couch like this while the cats prowled hungrily, begging for leftovers.

 

Strange Flavors!

authoress in motion, bipolar disorder, dissociation, rapid-cycle bipolar disorder

Hey readers!

I have some exciting news to share with you guys today. On Sunday night, I had the opportunity to hang with the crew of Strange Flavors and tell a little bit of my story about what it’s like to live with depersonalization/derealization; we also talked a little bit about living with bipolar disorder.

This has actually been in the works for a few weeks. As some of you know, I took a ton of classes during intersession, which is basically a one-month set of classes going at breakneck speed. It was madness, but I knocked out nine credits in a month, so I consider it a victory overall.

One of the courses I needed to take for my program was career/life development (something, something…the actual course title was pretty long and I’ve forgotten the rest of it). During that week, I connected with the fabulous Neha, whose brother and a few friends run the Strange Flavors podcast. She approached me on the last day of class, said I seemed interesting (which I found ridiculously flattering), and told me to shoot her a text about possibly making an appearance.

So, fast forward to Sunday. I showed up to do the podcast and was immediately welcomed by Amber and Faras, two of the podcast wizards. They made me feel incredibly comfortable and welcomed, and it was an amazing experience! We sat for about an hour while we did the standard podcast-interview thing; I found their questions incredibly helpful, because my thought train tends to majorly derail when I actually talk about this stuff.

I brought my fella with me for moral support. (He was also curious about how a podcast is made, and we planned to hit up Alewife on the way home. Spoiler alert: They were closed. At 7:30 PM. On a Sunday. Boo!)

I’d never been on an actual podcast before. I’d done the Risk! live show in 2015 and have, of course, made some really crappy-quality videos for my Youtube channel, but this was a totally different animal. They also recorded video of the session, which made me freak out a little bit because I cannot stress enough how unphotogenic I am. However, I’m looking at in a positive light and am excited to see the video once they throw it up on their channel.

Here’s the podcast–have a listen and let me know what you think!

So what’s next? I have a new video a-comin’ that I’m planning to upload probably next week, and I’m thinking of submitting another pitch to Risk!. Gotta keep that hype train rollin’, right?

Anyway, check out the rest of the Strange Flavors podcasts–they’re funny and genuine and I think you’ll really like them.

Another spoiler: The big thing on Strange Flavors is that at the end of each episode, they ask their guest to say what flavor they’d be and why. I chose violet-flavored hard candy, but you’ll have to listen to the episode to find out my reasoning behind it. Ha!

Until next time, readers, stay safe and sane. I’ll catch you guys in the very near future.

It’s okay not to go home again.

abuse, anxiety, personal experiences, relationships

For Thanksgiving, we flew back to my hometown in the Midwest to visit my remaining family–my mother, the aunt who was my legal guardian when I was a child, and another aunt who lives about an hour away from said hometown but visits regularly.

As I told my therapist this afternoon, “I don’t want to say it sucked, but…it sucked.”

I don’t want to get into any of the messy details, but I realized a few things during our brief Thanksgiving trip.

The first is that my grandmother is dead, like, for real-real. My “mom” is dead. Full stop. It’s not that I was pretending otherwise, but being in her house without seeing her there drove the point home in an unexpectedly painful way, and I had to hold it together while I was there because I knew if I lost it, so would everyone else, and then it’d be this whole terrible thing that I was just not equipped to handle.

The second is that it’s not normal to spend the week up to your flight being anxious and trying to brainstorm ways to defuse any potential arguments. It’s not normal to be five minutes from landing in your hometown and freaking out because you have no idea how many fights there will be this time or how bad they’ll get.

The third is that it’s simply not healthy for me to go “home” again. My therapist agreed with this assessment–there really is nothing there for me anymore. I’m 28 and am building my own life, my own family. If anyone wants to visit me, they know where I am. There are several large airports nearby. I never turn my phone off, though I have become more selective about when I answer calls–if I’m emotionally exhausted and have nothing left to give that day, I let the call go to voicemail.

It’s not like I’m unreachable. I just don’t want to make the effort anymore. I’m tired of throwing myself out into the wilds of my family-of-origin and hoping I come back in one piece. I’m tired of having to tell them, “Hey, I flew all the way here, can we all just get along?” I’m tired of having to put a dog into the fight. I’m tired of there even being a fight.

I went back “home,” and all I got was the flu and three days of crippling anxiety and depression.

Readers, it’s okay to set boundaries. If, like me, you’ve finally hit your breaking point, please try not to feel guilty about it. You need to take care of you first. You can’t pour from an empty cup, and life is too short to spend it with people who make you miserable.

Dichotomy

anxiety, ptsd

Is it possible to simultaneously be the most troubled and the most well-adjusted person you know? The deeper I go into my counseling program, the more this question pops into my mind. On the one hand, my demons are legion. On the other, I keep them very well-controlled and they all have little color-coordinated leashes.

Am I well-adjusted because I have to be? Does being well-adjusted look the same, or mean the same thing, for people who have backbreaking loads of trauma and those who don’t?

I used to worry a lot about whether my personal mental health history meant that I can’t be a therapist. I still worry about that, though thankfully not as much. Tonight in class, we were discussing self-disclosure and one of my classmates brought up that exact question–how are our clients supposed to trust us if they know we have our own set of problems?

I guess it’s one of those situations where what you have doesn’t matter as much as how you handle it. I get up every day and even though I do a fair amount of yelling at the intrusive negative thoughts, I still manage to accomplish everything on my to-do list. (Well…most things, anyway. I’m human.)

This has been on my mind for most of the day today, probably because I had intake with my new therapist yesterday and was thinking about the wall between my thoughts and feelings. I depend so heavily on that wall to keep it together, and I’m a bit worried–or, okay, a lot worried–that once I start really delving into the trauma and trying to merge my thoughts and feelings that there will be this monumental change and I’ll basically fall apart. I can’t remember the last time I was able to feel an emotion on an actual deep, meaningful, emotional level for more than a flash before cognition takes over and the brain reasserts control over the “heart.”

I know that’s unrealistic and that no one can do a total 180 in terms of functioning, but the unknowns are scary. As horrible as it is to know certain emotional things but not be able to feel them…better the devil you know than the devil you don’t, right?

I haven’t had self-doubt like this in quite a while, but getting the thoughts down on this little blog has helped a bit. It’s funny how writing about your troubles takes away some of their power, isn’t it? I’m also going to hit the self-care pretty hard tonight because tomorrow I have a phone interview with another prospective internship site–yay! That search is pretty terrifying, but I have a good feeling about the last couple of sites I’ve contacted, so fingers crossed.

Until next time, readers, remember to take good care of yourselves. I will, too.

 

News Day Tuesday: Acronyms! (Or: MDMA for PTSD)

a cure for what ails you, anxiety, dissociation, medication, News Day Tuesday, personal experiences, ptsd

Good morning, readers!

School started last week and there’s been a lot going on in my life on the personal side–my 94-year-old grandma, who essentially raised me as her own for most of my childhood, has been ill and I’ve once again been dealing with anticipatory grief.

Anyway, on a happier note, here’s some news for you about PTSD. (And it’s literally happy–it’s about Ecstasy!)

In a nutshell: those lovable FDA officials just granted MDMA “breakthrough therapy” status as a potential treatment for PTSD. Clinical trials will (hopefully) be easier to come by now, and I am very much looking forward to seeing how this develops.

Important distinction: MDMA isn’t FDA-approved, but this is a huge step in a very promising direction.

Right now, PTSD treatment options are super-limited. My brand is pretty wicked, but my only option for dealing with the symptoms is lorazepam/Ativan. I count myself lucky that I only have depersonalization/derealization, anxiety around crowds, and the occasional nightmare. It could be a lot worse. I’ve written extensively in the past about my experiences with dissociation (hence the name of the blog), but like most things, you get used to it.

But it’s not something anyone should have to “get used to.” None of us should have to accept the symptoms as our “new normal,” and for many, the symptoms are debilitating. That pretty much goes without saying (though of course, I decided to say it anyway).

I recently completed a research proposal for one of my summer classes, and while it was a painful process for someone who’s not a big research fan, it was definitely eye-opening. There has been shockingly little research done on depersonalization/derealization; most of what I encountered deals with “dissociation” in broader terms and the individual disorders are either not specified or are all lumped together in a mass that ultimately provides no insight about the actual conditions.

Anyway, that’s a post for another day. What I’m getting at is that PTSD is an incredibly complicated beast. While some symptoms are consistent, it never looks the same in two different people. Anecdotally, the symptoms can look different at various stages in a person’s life.

Seven years ago, I was having flashbacks (not the dramatic Hollywood kind where you’re literally in the memory–the kind where you sort of space out and the memory plays out in your mind’s eye while you’re pretty much unresponsive to the real world). Then, in 2012, the flashbacks stopped and the depersonalization/derealization got its hooks into me and has been hanging on for dear life ever since.

Like I said, you get used to it. The pain fades. You adjust to never really feeling “real,” to being in this perpetual dreamlike state. When it spikes, I try to welcome it as a new adventure and pay attention to what feels different without getting anxious or judging it as “bad.”

Still, it would be nice if there was something out there that could help just a little. I’ll be keeping my eye on the MDMA  breakthrough and keep you posted on further developments.

In the meantime, readers, what helps with your symptoms? Grounding exercises are one of my favorite things to do if I start to feel anxious. It’s less tedious than counting things.

News Day Tuesday: BLOOM by Anna Schuleit

a cure for what ails you, bipolar disorder, major depression, memories, News Day Tuesday, ptsd, rapid-cycle bipolar disorder, stigma, three hopeful thoughts

Hey readers! This week, we’re doing something a little different for News Day Tuesday.

I stumbled across Anna Schuleit’s beautiful BLOOM project from 2003 (yes, I know I’m super late to the party). Today, I want to celebrate that project.

In 2003, artist Anna Schuleit installed 28,000 (28,000! Yow!) potted flowers throughout the psychiatric ward of the Massachusetts Mental Health Center (MMHC).

Anna Schuleit’s installation project was created within the entire building of MMHC, on all floors, inviting former patients and employees, staff, students, and the general public, to re-visit the historic site once more before its closing. There was also a symposium at a nearby venue, and an open forum on the front steps of MMHC, during which the patients were invited to tell their stories. The events were dedicated to the memory of the thousands of patients of MMHC, and included as many of them as we were able to contact, as well as the doctors, nurses, support staff, researchers, students, and the general public. The project was a non-profit effort run entirely by volunteers and all of the events were free and open to all.

Source

As people living with mental illness, some of us with more than one, we know the therapeutic power of telling our stories, of having a voice when we’re so often voiceless. Mindy Schwartz Brown wrote some beautiful poetry about her experiences at MMHC, which you can read here. One poem in particular, “Asylum,” touched me deeply.

ASYLUM
(for Anna)

How did this edifice become “home” to its inhabitants-
the renowned multiply degreed,
the haplessly homeless dually diagnosed,
the walking wounded,
the worried well,
the happy go lucky who cleaned floors,
cooked lunches,
took blood pressures.

How could it contain all of the
the egos,
the disintegrated, the inflated,
occupying one space in parallel play?
MD, SPMI
Ph.D, BPD
MSW, DBT
Tell me in this soup, where does one find one’s ME?

DSM IV, Anybody going for V?
What’s the code for those who close hospitals
then open prisons for the sick?

We all feel so much better now,
knowing our brains are
faulty and we are not.
Structural errors ,
neurotransmittor deficits,
viral origins,
genomic misconfigurations.

So now can we all be friends?
Can we do lunch?
Just as we would with a diabetic?

October 3, 2003

Mindy Schwartz-Brown © 2003

The pain of not being recognized is one we know all too well. The lines “We all feel so much better now, / knowing our brains are / faulty and we are not” struck a chord with me that resonated all the way through my body and down into what some people call the soul.

We are the ones who are forgotten. We are the ones who are hiding in plain sight, not out of our own desire to be invisible, but of the desire of others to make us invisible. We make others uncomfortable, particularly when we don’t outwardly fit the mold of the “mentally ill person.” Whenever I reveal that I have bipolar I and CPTSD to someone, I am typical met with one of two reactions. The person either recoils–the discomfort in their eyes is stark and harrowing–or they tell me how “brave” I am.

I am not brave. I simply live. What choice do I have? I do not want to die, though there are plenty of people who view living with a mental illness as a fate worse than death–and I find that more disturbing than anything going on in my attic. There have been countless times when the hauntings have gotten so noisy that I feel as though my mind may literally split in two. Still, I live. Our lives have worth. We have worth.

I’d like to end by including a few photos of Schuleit’s installation. I spent a great deal of time yesterday perusing the photos and reflecting–not on my own experiences, as I have never been inpatient, but on what others’ experiences might have been like as they lived out their day-to-day at MMHC.

bloom-by-anna-schuleit-red-mums-640x920

bloom-by-anna-schuleit-white-tulips

bloom-by-anna-schuleit-blue-hallway

All images above copyright Anna Schuleit.

Tell me your stories, readers. It’s important.

News Day Tuesday: BiAffect App Links Keystrokes with Bipolar Episodes

a cure for what ails you, bipolar disorder, News Day Tuesday, rapid-cycle bipolar disorder, three hopeful thoughts

Greetings, readers!

It was a bit of a challenge to find an article for this week, but I finally stumbled upon something that could make a huge difference in how we track our moods. There’s a new app called BiAffect that uses your keystrokes, frequency of texting, and social media app patterns to track manic and depressive episodes.

To find out whether a user might be experiencing a manic or depressive episode, the app tracks typing speed, how hard keys are pressed and the frequency of the use of backspace and spellcheck.

chicagotribune.com

I know there are a lot of people who dislike the idea of being tracked in any sense, which is totally fine. However, I feel a bit more comfortable with it knowing that it comes directly from a research group. It’s only available for iPhone, which is kind of a bummer because I’m a die-hard Android user.

I wish something like this had been around in 2013, when I was deep in the throes of exhausting rapid-cycling episodes. I was newly diagnosed, but the challenge of finding the right combination and doses of medication, the loss of my job (probably due to my cycling), and the overall disintegration of my marriage had more or less temporarily erased any benefits or relief I found from my diagnosis.

One of my long-time friends mentioned that he noticed I was posting a lot more on Facebook when I was manic than when I was depressed. Like, a lot. Even now that I’m stable and successfully medicated, I still pay close attention to what and how often I post. When I’m more energetic and feel like interacting with others, I find myself wondering if it’s because I’m manic, hypomanic, or just…not depressed.

When you’re living with bipolar disorder, it’s a constant question of Column A, Column B, Column C, or a bit of each. You learn to analyze your moods and energy levels, and this tracking can quickly become obsessional.

I see this app as a double-edged sword. On the one hand, it would save those of us who pay attention to our moods a ton of work. On the other, those of us who are prone to preoccupation and overall obsessional thinking could end up checking in a lot more often than usual.

If BiAffect is released for Android, I’m for sure going to jump on it, at least for a trial run. It seems like it could be a useful tool for mental health care providers and patients alike–rather than having to drag in pages and pages of mood diaries, we could pop open an app and have the data right there at our fingertips (literally). And, at least in theory, it seems like any sort of self-report bias would be removed, or at least mitigated. I know I’ve been guilty of fibbing a bit in my mood diaries due to the shame that comes from realizing just how sick I am.

What do you think, readers? Would you give something like this a spin, or do you find it intrusive? Let me know! I’ll be keeping an eye on this one.

Until next time, stay safe and remember to be excellent to yourself.