Wednesday, January 11, 2017

My Personal OCD Story

On this blog, I've been fairly open about my experiences regarding my Asperger's diagnosis that I received in 2009. At the same time, however, I received two other diagnoses, which go hand in hand with each other since they've been known to feed off of each other in certain situations.

I also struggle with obsessive-compulsive disorder and social anxiety, with OCD being the chief offender. I've gotten a good handle on my social anxiety with the exception of one particular issue, one which my OCD has been feeding since 2009. It's very silly-sounding, but it's been something that's been virtually omnipresent in my life for eight years.

When I was an undergraduate student, I had trouble making friends. I wasn't connecting with very many people during my freshman year (with the exception of my online friends, most of whom I'm still close with). Finally, I met my future roommate by chance when I accompanied the Japan Club to Katsucon in 2008. We hit it off and talked online, and before long I was part of that friend group. I was so thankful to have friends I could spend time with at school, and I kept in touch with everyone as well as I could over the summer (especially since my future roommate and I had started a joke anime roleplay on Livejournal - I know, I'm old).

Over my first sophomore semester, however, I noticed things seemed off. My future roommate had lost her mother to cancer several months before we'd met, and the inevitable depression was setting in for her because they'd been exceptionally close. However, they were a lot closer than a normal parent and child would be, to the point that they had seemingly had something of an interdependent relationship on one another. I tried my best to be a good friend, but as time went on and she struggled more and more I started feeling responsible for keeping her alive since she had told me more about her mental health than other people. This led to near-constant text message contact and anxiety on my part as I assumed a sort of caretaker role. Unfortunately, this was probably the worst thing I could have possibly done - based on our interactions, I suspect that she projected her mother onto me, and she was a much more tactile person than I was. The physical closeness was awkward for me because I'm just not a cuddler to begin with, but she was fairly clingy and it made me uncomfortable.

In late January or early February of 2009, about a year after we'd met, my OCD started in earnest, although admittedly the anxiety I'd felt about having to be responsible if she hurt herself due to her mental health was likely a manifestation of it, as well. I'd definitely had flashes of OCD before (including convincing myself that I'd poisoned myself in chemistry class in high school), but this was the first time it was ever a disruption to my life on a large scale.

"So, Steph, you've never dated before. What if you've been gay this whole time and didn't know it?" my brain suggested one night. It then proceeded to never stop suggesting that despite evidence to the contrary. Everything had combined into one giant source of anxiety - the sort of responsibility I'd ended up feeling because my future roommate had become emotionally dependent on me, the general stress the situation was causing me, and my angst about never having been on a date due to horrible bullying as a kid. I had a full-on mental breakdown over the course of the second semester of my sophomore year, one which I only survived because on April 20th, 2009 I met the most important individual in my life, a little six-week-old kitten who I named Murphy.

Image: an exhausted Italian-American woman (Steph) holds a small kitten (Murphy) inside a baseball cap to show how small he is.
Murphy, who now more or less acts like I'm his mother even eight years later, gave me the motivation to keep myself alive, because my OCD had been telling me that the only way to stop the thoughts was to kill myself, something I decidedly didn't want to do.

The thoughts were very strange, on that note. They were uncharacteristic of an actual LGBT person realizing what their sexual orientation or gender identity was. They were frantic, unceasing, relentless, and anxiety-inducing. I'd only been attracted to men up until that point in my life, but I had always been characteristically shy about the mostly fictional men I'd crushed on, and the only time I'd ever really had a proper real-life crush I was too afraid to say anything (and later felt jealously for the first time when another girl was capable of talking to him without being anxious). These thoughts were the first thing that popped into my head in the morning and the last thing that I thought about before falling into a restless slumber at 3 am. I was nauseous a lot of the time and I also started constantly "checking" my reactions to people to see if I was feeling anything. Anxiety, naturally, can cause false arousals, so I was unable to tell what was going on downstairs, and that made it even harder for me to stop.

Additionally, I didn't understand the thoughts because they didn't come from a place of homophobia, but from a place of constantly questioning my identity. It was a fear of not knowing or not being sure. I knew if I turned out to be a lesbian, my family and friends would have been fine with it. It was a bizarre anxiety that I couldn't quite explain and that refused to leave me alone.

Finally, I found out about Purely Obsessional OCD. Pure-O, as it's commonly shorthanded, is a form of OCD where most or all of the compulsions are performed mentally, i.e. "checking" oneself for reactions and whatnot. I remember this occurring sometime in March of 2009, and I actively sobbed when I discovered a specific subtype, shorthanded as HOCD (for "homosexual" or "heterosexual" OCD) - people whose OCD focuses on their sexual orientation. Straight people with HOCD have prolonged OCD anxiety about suddenly being gay, whilst gay people with HOCD have prolonged OCD anxiety about being straight - and bisexual and pansexual people suddenly fear that they're only attracted to one gender. It's irrational, and everyone who struggles with it knows it's irrational, but it dogs us throughout our daily lives.

As soon as I knew my odd OCD thoughts were OCD and not anything else, I began seeing a campus therapist, and roughly a month or so later, Murphy came into my life. I made it through the semester, got home, and eventually got my diagnoses - Asperger's, OCD, and social anxiety. The next two years, I worked to get my OCD under control, but was now living with my roommate, and as her own mental illness continued to ravage her I dealt with unintentional emotional abuse, which made my recovery significantly harder. In 2011, I graduated and returned home for good, then slowly ended the friendship, knowing that it was the best thing for both her and myself. Finally, I was able to work on recovering my mental health to its former state.

OCD is still an ever-present part of my life. In retrospect, it always has been one from the beginning, but it never became a major factor until my 2009 mental breakdown. I'm confident in my sexual orientation now (generally attracted to men, although I may be somewhere on the asexual spectrum, but I'm not sure). I still have another major hurdle to get over - finally going on a date - which I'd like to work on in the future. Social anxiety from being bullied by boys my own age has taken its toll, and combined with my OCD flaring up when I'm not immediately attracted to the few men who have shown interest in me it's been difficult for me to get over the anxiety and try to meet people. Add my Asperger's to the mix and you have...well, not a very good combination for meeting men. It's something I desperately want to be able to do but which I'm too afraid to go out and try, and that fear is actually something I'm ashamed of. I wish I could explain it more articulately to people in real life because I'm well aware my fears are irrational (although my anxiety is based in cruel experience), so putting it in writing will have to suffice for the time being.

Yet do not leave this page thinking that my OCD is still ruining my life - I'm on Zoloft, which helps significantly, and I've learned various mental techniques for combating it, namely cognitive behavioral therapy and thought records (which are somewhat like keeping a Vulcan around to tell you that you're being illogical all the time). OCD is something that will be there, but which you can keep in check and shout down once you learn how to do it. I also recommend reaching out to other people with OCD to get advice, too - I know I've helped a few of my fellow OCD sufferers along the way and I encourage you to become involved in the OCD community for support. Knowing other people are having similar experiences to your own and can help guide you is sometimes a life-saver.

In conclusion, I've written this blog post in the hopes that other people will not have to suffer the way I did. OCD is awful and can be particularly cruel to people - it can make you fear an ever-looming disaster, doubt your identity, panic over hurting someone you love, or even make you constantly afraid that the people in your life don't want to be there. It's a menace, and we have to fight it with understanding and information. Together, we'll be able to beat this thing. I promise.

Wednesday, November 9, 2016

Stay Determined

I woke up today and it was raining. I suppose that's an appropriate thing since a nation is crying right now.

This morning, I wrote a post on Facebook that I also shared to my Tumblr account:
I slept worse last night than I have in some time, probably because I’m horrified that such a large percentage of our country is filled with bigotry, racism, sexism, homophobia, and all other manner of horrifying things. I’m a disabled woman (I’m autistic) and I’m now fearing for my safety and rights due to the rampant ableism on display from these people.
 I’m an autistic rights activist, and I refuse to stop fighting to protect anyone who’s marginalized, not just my fellow autistic people. If you need someone in your corner, let me know, because I’ll do my level best to help you through. We’re going to get through this because we’re going to fight back and show people just how amazing humanity can truly be. We don’t take our orders from demagogues, we take them from our hearts. We don’t follow, we lead.
Let’s continue to lead and fight for human rights for all. I’ll be right there on the front lines with you. It’s never been a better time to stand up for what’s right and ensure that everyone can live in safety, regardless of gender identity, sexuality, race, ability, past traumas, financial need, age, or anything else. Everyone deserves to feel safe to be themselves and I won’t rest until they are. You with me?
People have been responding to both of these posts in varying ways, and the one that makes me the saddest is multiple people feeling like they have no fight left in them. These are the people I've always fought for the most because someone needs to keep going and carry them.

In 2013, I watched the Red Sox win the World Series for the third time in one decade, and it taught me more than the wins in 2004 and 2007 did. This particular win came through sheer force of will. The Red Sox were carried by David Ortiz throughout that World Series. One man was able to pick up 24 other men on his back and carry them to a title because he believed so strongly in helping his city heal from a horrible event, the bombings that had happened back in April of that year. He was so motivated that his determination carried the team along. He motivated them and he gave them strength. We need people to be like Papi and stand up and be that determined person who carries everyone else, and I'm ready to be that person now. My friends and family need it. I needed it not long ago myself. I'm actively trying to be the person I needed when I was younger, and I'm realizing now that a lot more people need that person than just me. I have to work even harder now to make sure that people have that person.

I had a panic attack last night as the results of the election came in. I hadn't had one like that since 2011, when I was still dealing with an emotionally abusive friendship. This morning, I quickly realized that my fear had become anger and motivation. I also noticed that not everyone was able to respond this way, and that is why I'm writing this post now - someone has to lead the charge to fight back for those who are unable to, so here I am. I'm angry, I'm resentful, and I won't accept anything less than human dignity.

Think back to about a year ago when an indie game called Undertale was released to great critical acclaim. The messages of that game were simple - be kind to others, especially those who are different from you, and never give up. Stay determined. Stay determined to make this world a better place for everyone, not just the people who are like you.

When you die in-game, the following screen pops up:


"Game Over - you cannot give up just yet." This is followed immediately by the name you chose to play with being told to "stay determined." Sure enough, you're back in the game right afterwards from the last place you saved.

This feels like a game over right now. But anyone who's played video games can tell you that game overs just mean you get to try again. You can always pick back up from your last save point and fight on even harder. And eventually, you do beat that boss or that level, and it's so satisfying because you worked so hard for it and you finally achieved it. Right now, we've got an abhorrent boss fight ahead of us - there's a large mass of mooks who believe in subjugation of human beings who aren't like them. Stand up to them the same way you'd stand up to a boss's subordinates in a boss battle. Make sure they know you're not complacent with their bias, and continue to fight for what's right until that boss, Bigotry, is finally defeated.

The only way to truly lose is to stop playing the game, and my parents didn't raise a quitter.

Monday, October 24, 2016

The Case For Eugenicist Reparations

I haven't had a chance to write much lately due to working two separate archival jobs (go me!), but I feel like as a historian I need to weigh in on this issue, even though it's been a few weeks since the announcement.

It's old news now that Autism Speaks changed their mission statement to eliminate references to "finding a cure." In fact, here's their new mission statement in full, right from their website:
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. 
Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.
Okay, so according to this they're not interested in a cure anymore, and that's great! That's a wonderful step in the right direction! However, there are words I'm a bit wary of in here still due to some historical context. There was an event during the Third Reich's stranglehold on Germany called Aktion T4, a move by the government to systematically execute thousands of disabled and mentally ill people. Officially, 70,273 people were killed, although there could easily be more of them that weren't recorded. Aktion T4 was only a test run, however, for Nazi Germany's execution of 6 million Jewish people and millions of other people. That's right, they tested the Final Solution out on people like me. Therefore, seeing the word 'solutions' always makes me a bit nervous because I happen to be a working historian. I'm not sure that it's meant in that way here, but it's still a word I'm very cautious about.

Additionally, if there's no need for a cure, why still look for a cause? Just throwing that out there, too.

With the death of Suzanne Wright, it's possible that Autism Speaks is going to be able to start moving in a new direction since Bob and Suzanne Wright more or less had a stranglehold on the entire organization and were extremely interested in finding a cure. There are now two autistic people on the Board of Directors, and frankly, I'm hoping to see more there in the future because for Autism Speaks to be as legitimate as possible they need to let autistic people themselves do the primary speaking so that people listen and learn from us. It's very possible that they actually are working on doing the right thing and working towards acceptance instead of a cure, and that would be nice. However, I think they owe us an apology for pushing forward so much hateful rhetoric and for their fear-mongering for the past eleven years that has vilified us and cast us as something that needs to be eliminated from society. For this, I propose we take a look at the site of one of my archival jobs, the Riverside Church in the City of New York.

In May of 1969, an activist by the name of James Forman interrupted a service at Riverside to deliver his Black Manifesto, demanding reparations for slavery and cultural injustice delivered to African-Americans by white people for centuries. Not long after, Riverside's pastor, Ernest T. Campbell, replied with a sermon called The Case For Reparations, supporting Forman's notion. It got me thinking - autistic people have suffered in silence for centuries, only to have been suddenly deemed an epidemic in the past twenty years and treated as less than human. Do we not, too, deserve reparations, especially those of us who are routinely dismissed, such as female and non-white autistic people? Do we not deserve to fight for our human rights, as well, and demand an apology from the organization that turned society against us, that caused the condition we identify with to be used as an insult? I believe that until Autism Speaks issues an apology and actively works to undo the damage they caused with their rhetoric, we can't fully believe they are working in our favor.

Continue, therefore, to stand up for yourselves in the face of ableism. Do not automatically expect Autism Speaks to speak for us since it's clear that it was our urging and activism that brought them to make this change in the first place and they haven't spoken for us properly before. Continue to urge and fight for change and improvement in this world - and don't forget that Autism Speaks still owes us an apology.

Reparations would be nice, too, since I have student loans to pay off.

Sunday, September 11, 2016

The Need To Matter To Someone

I haven't written here in ages, and it's because I've had an archival temp job that's kept me very busy! It's been really nice to be working, even though it won't be for too much longer - doing what I love and being paid for it feels wonderful.

It's also a bit odd to be working on a blog entry around 3 in the morning, I know. I'm fairly nocturnal as it is, but I'm up late working on NYCC cosplay stuff with a friend (it's a Saturday so it's okay) and I had a realization about myself that I felt like I needed to write about.

As I've occasionally mentioned on this blog, in late 2011 I ended a friendship that had become unintentionally emotionally abusive for me due to the other person's struggles with themselves and things that had happened to them. I know my friend didn't mean to take things out on me the way they did, but it got to a point where I knew the best way to protect both of us was to get myself out of there. This friendship unequivocally changed me as a person and made me grow in ways that have been both positive and negative. I had a realization about one of the more negative things that has happened to me tonight and I'm currently sitting here typing this out so I don't cry as my friend sews next to me.

Growing up, it was difficult to find full acceptance from my peers. People would sometimes hang out with me and drop me or even hang out with me out of pity until I got to high school and developed a set of friends (who are still my best friends today and are amazing). I was able to be myself around my friends in high school and that was so important for me because normally who I was wasn't acceptable to other people. In college, I was also initially rejected by my peers because nobody at the preppy liberal arts school wanted to be around the weird baseball girl. I did find some friends, though, one of whom became my college roommate. She'd lost her mother not long before she met me, and I tried to make sure I was a good, supportive friend because nobody deserves to lose someone they love to cancer. Eventually, though, her depression caught up with her, and she desperately sought to plug the mother-shaped hole that had been left behind. The problem was that to fill the hole, she began to unconsciously use me as the plug. This put pressure on me to be constantly strong and supportive and eventually triggered my 2009 OCD mental breakdown, which I don't think I fully came out of until 2011, when I ended the friendship and had time to mentally recover. Her mental illness plus my mental illness ended up being a really bad cocktail, so being roommates for two school years probably wasn't the best decision for either of us but we didn't have too many other options and I didn't have many other friends at school. We were both trapped until I graduated and slowly weaned her off of me because I knew she wouldn't be able to recover herself any other way. I did what I did to protect both of us, and I hope it helped (a mutual friend informed me recently that she got happily married, so I think I did the right thing for her).

The realization I came to tonight as I was sitting here was that I'm still stuck in a certain pattern that combines my early lack of acceptance from my peers and my desperation for approval that developed during the emotionally abusive friendship. I often go far out of my way for my friends to help them with things and generally try my best to be a good friend (a thing I have to put a lot of conscious thought into to make sure I'm doing it socially acceptably). I'm willing to put my own well-being and even my health aside for my friends sometimes, and that's where things can get a bit dicey because I'm not good at drawing a line between taking care of myself and helping other people. I actively choose to be kind because I want to be kind and help others - it feels right to me to do. The problem is that I also feel this nagging desire in the back of my mind to do as much as I can for others so that maybe someone at some point somewhere will think I'm important and treat me as such. I do so much more than I have to in a desperate quest for validation, and I'm not sure it'll ever succeed because it's self-defeating (the more I do, the more people are willing to ask me because they know I'll do it because I want to help). I want to matter to my friends the way I've rarely felt that I do, and yet I go about trying to earn that importance in a way that's so exhausting and ineffective that it's never going to happen that way.

And yet after all that, I feel selfish saying that I want to be acknowledged in some way, so I don't even tell people that I want to know I matter. I feel like bringing it up is asking for something that I shouldn't be asking for, that it's something my friends feel that they already give me. Implied acknowledgement doesn't exactly work when your friend is autistic, however - I'm going to need occasional blatant confirmation that yes, I'm an important friend, too, and my needs matter just as much as everyone else's.

I just need to break out of this cycle because tonight I realized just how detrimental to me it could potentially become. I'll work my way out of it like I work my way out of everything, but just realizing that I feel selfish for wanting acknowledgement that I and my needs matter to my friends is concerning enough to me because it reminds me that although I've moved on from that emotionally abusive relationship, I still haven't healed all the scars.

Monday, July 11, 2016

At Last, A Character Really, Really Like Me

I'm not sure I've ever related to someone fictional more.
Finding characters I relate to has always been a fairly difficult task for me throughout my life because autistic characters just don't pop up in fiction very often, particularly when it comes to autistic female characters. This is something I've discussed before - those rare characters I click with tend to be male characters only because there are very few female characters who really remind me of myself.

And yet here I am, 27 years old and suddenly relating really intensely to a teenager who flies around in a giant green lion and fights aliens.

Voltron predates me (1989) by a few years; it premiered in the U.S. in 1984 and ran until 1985. It's actually a lot like the original incarnation of Power Rangers in the U.S. in that multiple anime series were mashed up and edited to make a new series entirely for the American market. (Specifically, season 1 was taken from Beast King GoLion and season 2 was taken from Armored Fleet Dairugger XV.) The series had a few U.S.-made sequels, and as of 2016 it now has a reboot that you can watch on Netflix done by Dreamworks. I'm a little more than halfway through so far and it's doing a wonderful job in capturing the spirit of the original series whilst giving the protagonists more characterization and depth.

Specifically, I really relate to what they've done with Pidge. Spoilers are ahead, so I'll put this under a cut just in case you happen to both read my blog and want to watch Voltron without being spoiled.


Saturday, June 18, 2016

Happy #AutisticPrideDay 2016!

Today is our day, everyone - let's celebrate the amazing people that we are!


For more on Autistic Pride Day, check out my friend Alyssa's post on it here.

Monday, June 13, 2016

Hey, Autism Spectrum Disorder Foundation: I'm Not A Monster

Somehow or other - maybe I signed some petition a long time ago - I got on the mailing list of an organization called the Autism Spectrum Disorder Foundation (not to be confused with asdfmovie). Every so often, they send me envelopes hoping I'll give them money even though since I'm an autistic person they should be giving me money. In general, I rarely have money to give at the moment since I'm job-hunting right now, but I'd much rather give my hard-earned cash to ASAN or the Autism Women's Network, organizations that I know are looking out for me and people like me.

Today I got a letter from ASDF trying to get me to give them money again, and this one actually made me angry.


Oh, yeah, this is promising. Calling me my parents' worst nightmare. Great way to start this one off.

So already irritated, I opened the envelope...


I'm so dreaded, you guys. I'm a national emergency. I'm a monster, ooooooh.

Here's the deal: yes, families with individuals on the spectrum absolutely need and deserve financial support to help their family members survive in a world that's not designed for them. We all could use some help with that. Services are definitely needed for both autistic children and autistic adults. But worded like this? This makes autism sound like some sort of death sentence. You know what actually could be a death sentence? Not vaccinating your children. Yes, autistic people - myself included! - and their families can use extra financial support since we often require special services to ensure that we can make it in this world that clearly was made for people who aren't autistic. However, scare tactics aren't the best way to accomplish that. My existence is not a tragedy to exploit. Neither are the existences of all of my fellow autistic people. If people were willing to take a few minutes to listen to us, they'd realize we're not that different from them. We generally want the same thing as they do - to be treated decently and respectfully.

So don't be afraid to donate to help families and individuals with autism - both children and adults need services and support! However, any organization that portrays autism as some sort of menace or an epidemic is likely misguided at best and deliberately using scare tactics at worst. (In fact, autism isn't even an epidemic - we've just expanded the diagnostic criteria and understand the signs more. I myself wasn't diagnosed until I was 20.) For organizations that you can support instead knowing that your money will directly help autistic people, check my resources page out here.

Initially, I went to recycle the letter I got since I obviously had no reason to keep the vile thing around. But then I had a better idea...

video