Rise of the Inaccessibility

Just last month, Rise of the Resistance opened here at Disneyland in California. I’d watched countless videos from Florida to get myself acquainted to their version in order to prepare myself for the opening on those side of the country.

Nothing, absolutely nothing, prepared me for what a nightmare the boarding pass system is for someone like me. This ride is an experience like no other, I get that, but it should also mean equal access to the ride as well.

If you’re new to my blog, experience, life, etc – I’ll give you a rundown. I’m autistic. We don’t use functioning labels around here, so I’ll break my experience down for you. I’m sensitive to certain sounds, textures, tastes, smells, etc. Most of the overwhelming sensations can come from other humans, mouth noises, unwanted touching, body odors or colognes/perfumes, etc. I prepare myself with videos to make sure the ride experiences aren’t going to overwhelm me, but I cannot predict other guests of the park either. I also happen to be agoraphobic with social anxiety, but just so
happen to be fixated on amusement parks in all aspects. Yes, it may seem bizarre to be potentially terrified of the same thing you love, but why is it bizarre for me but normal for an able bodied person who gets a thrill out of something like rock climbing, it could also be terrifying for them but also rewarding. It’s kind of like that for me, there’s so many things I love about parks like Disneyland, that the good could outweigh the bad completely, but it’s not always predictable either.

Right now, to get to experience Rise of the Resistance, you have to get a boarding pass, similar to when Galaxy’s Edge opened in the first place. Of course Galaxy’s Edge itself is larger and can deal with a more people coming and going. It also didn’t reach the peak the parks were looking for here and never quite got to the chaotic levels getting into a ROTR boarding group can be. The passes are generally gone before 9 in the morning. I have great difficulty being alone in the parks, so it isn’t easy for me to have someone go ahead and leave me behind while they attempt to get times for us both. This means able bodied folks can race ahead and get times, some local pass holders even getting times, leaving completely and coming back later. There’s people who find ways to get them from parking or pulling in to the parking lots which are spitting distance from the spires of Batuu. For someone like me who also happens to wear an AFO for one of my ankles, I can’t get to where I need to be faster than anyone else. On a busy day, crowds can start before opening, which means I could be surrounded by people who are preoccupied with themselves and not worried about someone like me on the verge of a panic attack if they push me. It’s not easy, and I’m not trying to get special access – I’m just trying to make sure that people like me have a chance to enjoy this aspect of Galaxy’s Edge and the Star Wars universe too. Those of us who don’t move and think like the general population aren’t asking for a red carpet or spotlights or to be part of your disability porn points. We just want access to the same things anyone else does, even if we need to reach the same point from a different path. The Star Wars universe is filled with disabled characters, from Darth Vader to Luke Skywalker himself, and they had a chance to explore Star destroyers, why shouldn’t other people like me?

I’ll break it down again if I didn’t make sense previously. In order to ride Rise of the Resistance, you must get a boarding group. You can do this from your phone, and must be in park property. You’re supposed to be in Galaxy’s Edge, but people have found ways around this via the parking lot and anywhere close enough in radius to GE. If you’re disabled, you must have a boarding pass in order the link your time to your disability access. The times have been gone before 10 and at the very latest 11 (supposedly) in a slow day. On the days we attempted, the passes were gone by 930. These were all mid week attempts, and we contacted disability services multiple times via phone and email only to get no help and a lot of condescending and rude remarks. Including but not limited to “well I have autistic family members and…” which is about the last thing any disabled person ever wants to hear. Kynowing someone with a condition, disorder, disease, syndrome, etc doesn’t meant you know anything about what they’re going through or anyone like them. It’s just downright ignorance and not empathetic at all.

Now there is one way to bypass all of this, even though even disability service cast member assured us they were trying to be equal – is VIP experience guests. I’m talking folks with plaids, celebrities especially, which just further proves if you have ENOUGH money, you can bypass the rules. I realize even having access to Disneyland is a privilege in itself, and it’s a privilege I acknowledge, but it’s one of the only “fancy” things I have access to that prides itself on accessibility and even claims those with cognitive disorders can reach out for help! (Not true, though the website claims this, we were bounced from cast member to cast member being treated with disdain like we were trying to cheat the system) I see the system that’s supposed to help people like me feel safe and comfortable being abused regularly enough. I see Mom’s whining behind me that it’s taking too long in the “fast pass” even though they’re in the disabled access loading area. They get mad at me for taking too long to board the ride the safe way I’m supposed to, and get mad the disability system isn’t “fast” enough for them when it isn’t about speed – it’s about comfort, stability, safety and more. So many people abuse the system that people like me can’t even be taken seriously.

I’m sure people will roll their eyes, some might tell me to get over it, but I only hope they never have to have their hopes crushed in the ways mine have, and now services meant to help folks like me have failed me. I’m just trying to have an equal fighting chance, and fight for those who need the same access. I’m hanging in to the little slivers of hope that I have left to safely experience Rise of the Resistance, because that’s what General Leia would want me to do.

Autistic Josey & The Healthcare System of Possible Doom

My body is a mess. It’s my mess though, and I’m working to organize that mess into a slightly more organized chaos. It’s not an easy process.

I was pretty healthy growing up. At least it seemed so for the most part. I had issues communicating what was going on in my body and thought maybe I was being dramatic or exaggerating what was actually going on. Whenever a puzzle piece is put down and finds its place when it comes to my body, the memories flow in. I didn’t know I had asthma for years, and when the diagnosis came I suddenly remembered asthma attacks in gym class. When I was diagnosed with panic attacks, I realized that rib crushing feeling and impending doom had a name and triggers. Hell, I spent almost two decades of my life not actually knowing I was autistic. Now that I’m in my mid-thirties, it’s unraveling every mystery brewing underneath my skin. Oh, and also on top…thanks eczema! I realized I didn’t have to hide the things I though I was just being “dramatic” about, I had a right to unlock my mysteries and have access to do so. I had to find answers for what many thought I was just making up excuses for.

People often ask why I didn’t do things sooner or know sooner. That you can thank the American healthcare system. My father was in the navy so growing up I had some basic health insurance. When my parents split and my dad got sick, money got tight so extra expenses for medical care just weren’t in the budget, not even a copay or prescriptions. On and off after I turned 18 I had some basic insurance until I was 23. Each time I started a new insurance, it was like starting over at the very beginning. Each insurance company had to do their own referrals, cross off every x and dot every i. It took time, it took patience. After 23, I was screwed trying to keep insurance, especially with preexisting conditions like (then known as) Aspergers or a worsening back injury & degenerative disc disease. It wasn’t until “Obamacare” that I finally got insurance I had good enough coverage on, and I wasn’t piling up emergency room and clinic bills. Before finally getting stable healthcare, I had accumulated thousands of dollars in medical bills. Not having a regular doctor meant I didn’t get regular treatment. Emergency clinics want to get you in and out so they do whatever is quickest. Everytime you go, it’s like starting over again. Some meds, a few suggestions to what it may be and a lot of paperwork. Stable, steady healthcare is a necessity for all human beings. For those who have prexisting conditions and those who just need preventative care. Who knows where I could be healthwise If I had access to something like the Affordable Healthcare Act sooner. Yes, There are very just complaints about Obamacare. I will admit I’m one of the lucky ones whose life it saved without further impacting my already fragile and irregular income. I count my blessings though, because who knows where I would be now without it.

Over the last five years, it’s been a slow, but rewarding process. I moved midway through the process from Orange to Los Angeles county which set me back a bit, but I’m understanding my body, what’s going on, and getting help where I need it. I had back surgery on one of my damaged discs, and we were able to identify just what is going on with my damaged ankle – a cartilage fracture, loose tendons & arthritis. I was just finally fitted for AFO’s to help give my ankle stability, but surgery is on the horizon…when my insurance decides to stop sending me through the ringer. It’s also not always easy dealing with social limitations either, one panic attack can force me to cancel an appointment and then go back into waiting for an appointment. Some doctors understand, and some don’t get it at all. Some surprise me with their knowledge of the complexities of autism and some shock me with their complete ignorance and outdated information. There’s been times where other issues with my body have forced me to miss appointments with one doctor to rush into another. It’s a lot of referrals, a lot of waiting, a lot of patience, but I’m grateful I have the chance to at least begin poking at the surface of the issues I’m not very familiar with yet. A chapter with many sagas that currently includes the yet to be diagnosed saga currently being played out in my uterus. A saga which currently is currently waiting for an endocrinologist referral. Patience isn’t one of my strong points, but I’ve learned to harness it when it comes to anything regarding my healthcare.

Like I said, there are annoying points in the referral system too. My ankle specialist knows I need surgery, but the insurance is making me do everything else “just in case”, because they will take any cheaper route than paying a surgeon, even if its non-invasive surgery that means I wont have to keep seeing so many doctors. I had one back surgery, but because I switched insurances when I moved (I tried to remain on my old insurance but couldn’t because of county lines) I am starting completely over with my back, even though we know exactly what’s going on. I have to restart physical therapy, all the scans, poking and prodding. This includes painful epidurals that don’t work for me but the insurance has to clear it. But I endure it because I’ve been on the side with nothing at all. I waited almost a decade for basic answers, to begin my journey with healing. It’s why I ask my doctors “too many” questions and argue when they make assumptions. (ie: the time my primary care doctor tried to say I needed to not shave with dull razors because my eczema was flaring. I rarely shave my legs. I showed her how hairy my legs were, stood my ground, and got the treatment I desperately needed and that flare up was better in two days.)

I will continue to share my health journey because I’ve been on the other side too. I also recognize that being mostly white, and definitely white passing, I receive more help healthcare wise than my POC peers. I am fortunate enough to have what I have now so I won’t go back to my previous distress when help is available for me. Who knows how long it will last either. I could lose my insurance at anytime, so getting answers now is crucial. Plus, Maybe my honesty and openness and can help someone, even just one person. Maybe my continued fight will help someone find the hope to continue their own. Maybe when I go into PT multiple times a week, even when I’m overwhelmed and non-verbal, it can help someone else get into overwhelming appointments. I am loud about my struggles because for too long it was silent when I struggled and needed answers. If sharing one thing I went through can help someone, none of it is ever in vain. Hell, I’ve even considered being in medical test studies not for the money, but to help others get answers…but the anxiety issues & mysophobia are block me there but who knows? Being in therapy, maybe that can be conquered too. Maybe those questions can be answered as well. For now, I’m just a student and my own body is the professor trying to educate me and I’ve got a LOT of homework to do.

Actually Autistic.

It took me what seemed like an eternity to embrace autism and everything that came with it. I pushed so much of it away, buried it in a funeral plot in my mind and hoped no one would see the freshly disturbed earth. I didn’t want to be autistic, despite the fact that it was so deeply interwoven in me and who I was. I was ignorant to my own behaviors in a desperate attempt to be normal. I had no idea that my autistic quirks were oftentimes my saving grace.

I wasn’t diagnosed as a child. I grew up that weird kid on the playground that had no “reason” to be the weird kid. It didn’t warrant me being picked on either way, but I also had no extra help that I needed. First they just thought I was hyper, then they thought it was just depression. Eventually, after high school I discovered part of who I really was. I was diagnosed with Asperger’s Syndrome after my psychologist put the pieces together. My then partner complained about me sucking on a blanket, no one understood why I rocked, why I would so DEEPLY fixate on things or why I seemed off socially. I never had much of a filter, certain types of humor escaped me, I walked on my toes what seemed randomly to others, but as a movement of excitement for myself. The pieces piled together and doors were opening for me, just as others were closing.

I struggled to be open about it because I didn’t truly understand it. Over a decade ago, my resources on the internet seemed limited, and back then places like Autism Speaks seemed like a trusted source of information. The more I connected to actually autistic voices, no matter how they choose to speak, the more I understood myself and realized how autism truly is a spectrum, and not even just from person to person but more so within the person themselves. Some voices aren’t as loud as mine, but it doesn’t mean they should be viewed lower than me because of their abilities, as we are all autistic. When Asperger’s was absorbed into the autism diagnosis, I struggled with who I was. I kept hearing “high functioning autistic” and at first took the label before being introduced on youtube to people who were labeled “low functioning” yet still told their stories and could be considered no different than me if people looked past the computer they were speaking through. Function is flexible, there are some days where I function better than others, this seems to be the same for most of my fellow autistic people but I don’t want to speak for all.

Autism is complex, but it isn’t a monster. For too long in my own life I saw it as a punishment or something I should be disappointed in, but it is not. It’s allowed me to observe people, to be open and honest with people, to love unconditionally, and so much more. Being open about who I am allows the stigmas that surround autism to begin their fall. I’m not the stereotype you may know, I’m not your “Rain Man” and the autistic children frequently portrayed in media become autistic adults, and I am one of them. Autistic adults lack many resources because we out grow them, and become to old for many of the systems provided. Autistic children are the common view of the autism community, because of groups like Autism Speaks. Autism speaks who puts sympathy with the parents and sees autistic child rearing as difficult without thinking of the perspective of autistic children or people in general. We live in a world that isn’t made for us and acts as if doing so is a chore or something that deserves a sob story. Accessibility is not something that people deserve a pat on the back for – it’s common sense. I deserve access to the same exact things you do in life – just as all disabled folks do. It shouldn’t have to be us pretending to be normal. I should be allowed to prance on my tiptoes on the good mobility days and rock safely in my wheelchair when my chronic pain is overwhelming and NOT be stared at because the ways I move my arms or legs. I shouldn’t be stared at when I’m out with my working service dog, nor should anyone police my use of my service dog. You shouldn’t stare because your narrow point of view thinks autistic people shouldn’t be covered in tattoos or have bright colored hair like me as if I wasn’t able to make these choices myself. I shouldn’t feel like a burden when I can’t do things traditionally.

An example from my own life being that time I worked at Ralph’s and was lowered in position because I couldn’t look people in the eye. Yes, because I couldn’t live up to a very ableist customer service rule, my manager decided to demote me by putting me on a night shift so I wouldn’t be able to interact with customers and make her customer service scores “look bad”. When I explained that I had Asperger’s (this was before its absorption in the DSM), she looked at me blank faced and said “I don’t know what that is”. She continued to lecture me as I cried and I was too poor to afford a lawyer and too overwhelmed and confused to even realize then what she was doing was discrimination. The situation still causes me pain and I’m forced to relieve it all time as I’m constantly fixated on what I didn’t do right in it. Somewhere Martha Brown probably still has a job, and I’ve struggled since then to keep jobs due to back injuries, mental health, and so much more. A complete lack of understanding from my managerial teams didn’t help either (Disneyland is a whole different disaster story, including how they made a fellow autistic worker stay back of house so he didn’t “bother people”) and working became a nightmare for me, combined with my ankle and back injuries, I became part of the disabled & unable to work part of America that is still very heavily looked down upon. Looked down upon because we don’t exist in your traditional boxes or nuclear family dreams, we don’t deserve anything. We don’t matter because we exist outside your societal norms, the norms whose foundations exist on ableism, exclusion, and ignorance. We don’t have to be held to your standards when you don’t bend to help us succeed in a world built against us. Many friends who said I could be open about who I was have disappeared because the actual presence of autism in their life didn’t reflect the minimal things they thought they knew. The more open and honest I was about all aspects of my life from sexuality to spectrum, the more they pulled away. However, in weeding out the people who only liked me when I pretended to be “normal” or adapted to what they wanted of me, I found the right people. I found neurotypical folks and people with other mental illnesses who existed on their own spectrums, people who gave as much as they took. These people saw my quirks not as my downfall but of my uplifting. I had words woven through me even on the days I could not verbalize, and a strong desire to share my existence with the world so they could understand my little sliver of the autism world. Those who have stayed to listen have showed me that I don’t have to adapt.

The world wants 100% from disabled folks when it only gives us a small percentage. We adapt to your schools, your rules, your socialization demands and other things you overlook because they may not be difficult for you. Yet we when ask for our own safe spaces we’re seen as a burden, as if we’re causing trouble or asking for too much. We’re asking to be valued as much as you are as a human being because surprise! we are human too! Access is something we all deserve, regardless of how we need it.

Next month is autism month, and it’s a month that’s been tainted by ableism and ignorance for many of us in the actually autistic community. Groups like Autism Speaks enforce the ideas that autistic people need to be “more normal” as if their view of existence is the only right way. This April, you can help actually autistic folks like me by listening to us. Not something you heard from your 3rd cousin, not from an experience you had with one autistic child in your daycare job, not something you saw on TV or in a movie. Listen to many voices, even if you have to read to hear them in your own mind. Meeting one autistic person doesn’t make you an expert, and there’s many of us out there with endless stories to share. Some of us don’t have proper access to share our stories, some of us have suppressed our stories because we don’t have people to listen, just police us. This April, educate yourself and support autistic groups that actually do good for our community, like Autistic Self Advocacy Network (http://autisticadvocacy.org/) or even the Autism Women’s Network for femme or female-identifying autistic folx. (https://autismwomensnetwork.org/) Challenge what you think you know about autism, and learn from those of us who actually live it. Look to the past and see how little we have progressed as a society in the fair treatment of disabled folks, it’s only been a couple decades since widespread institutionalization of autistic folx. Stop and ask yourself is you still used works like special needs or differently abled. Progress starts with you. We don’t just need awareness, we DESERVE acceptance & appreciation as well.

[ANTI]Social

My palms are soaked with sweat and my breathing is so heavy yet erratic I wonder if I’m having as asthma attack. My arms shake so bad I wonder if they’ll even work and I feel as though my ribs are tightening around my lungs. Pain shoots up and down my back and my body stiffens. My heart is beating so fast I wonder if this is the end and Its going to explode out of my chest and leave me on the hard wood to die. My hand grabs the cold golden doorknob with the slightly chipped paint and suck in a breath so deep I wonder if it’s in a completely different realm.

Opening the door I squeak out a “thank you” as cardboard hits my fingertips and a package is thrust in my arms. I turn swiftly and lock the door behind me, cradling the package to my chest and trying to catch my breath that went back to erratic.

It was just the mailman, but you’d think I was just delivering a speech that would save me from life or death. Just a small package and two words and I feel like breaking down and crying. Did I say thank you loud enough? I kind of fumbled the package, does she think I’m dumb? Last time she asked about a dog and I said it wasn’t mine, thinking she meant the one at the gate but she didn’t, she saw Oberyn, does she think I’m dumb? A liar? I can’t stop fixating on the tiniest, smallest things in a simple interaction that I wear myself down to one rusty spoon to offer up for the day. A simple interaction took all my spoons for the day and I’m feeling like I need a do-over. It’s only morning and I still have so much to do. I’m over socialized and overwhelmed and I’ve yet to even eat for the day.

I try and push through my routines, swallowing down applesauce to quell my nausea, shoving my prescriptions in my mouth and hoping the anxiety pills kick in soon. Smoking weed until I feel like I’ve gained a couple spoons and can start fresh.

My phone starts ringing and it feels like it’s ringing for five minutes as I stare in panic. I don’t even listen to the voicemail, hearing another voice on the phone who isn’t my mother makes me shut down, I feel locked in place. I read the patchy prediction of what the voicemail says and text my girlfriend to let her know my doctor needs some information. The thought of speaking on the phone makes vomit rise in the back of my throat and everything tastes like applesauce. I imagine everyone I know is laughing at me or making fun of me for the fact that I “can’t do adult things by myself”. I start to think about situations that happened years ago and fixate on what I did wrong, nitpicking every little detail of a memory someone else probably doesn’t even have anymore.

I try and distract myself on social media but even there I feel like I’m just floating above, hoping I’m not too annoying. I see beautiful faces, selfies of friends I admire and I like them. Fingers hover over the keyboard for a good ten minutes as I delete what I want to say about 8 times before finally saying nothing. Sometimes I get brave and send a reply, “You look so gorgeous today”. and I’m stuck for five minutes wondering if they think I’m annoying or fake. Maybe I get the courage to post a few photos of myself but then I’m burying myself in self loathing. Everyone thinks you’re dumb, ugly and trying to hard. You’re not cool, you’re annoying and you’re not going to get ANY likes and you think someone would actually retweet YOUR ugly fat face? HA, yeah right. If I don’t eventually delete my face from the internet, I find myself crying at the lack of numbers on my posts, trying to find some mantra about how it doesn’t matter while my anxiety eats me alive. I’m back thinking about failed friendships, or even darker things, like past assault and other nightmares.

I distract myself with some weed and a video game. I have a meltdown when I can’t do something right in the game, I mess up on a button combo and hit myself in the head with the remote, cursing my existence and belittling myself until I’m left a meek child. Oberyn helps me calm, I can feel him licking my cheek and the fog starts to clear. I have a good round of the game and I’m feeling a little better. Im dreading the clock because I told someone I’d do something with them but I can feel my body magnetize to where I am sitting. The one who couldn’t sit still can suddenly sit quiet as a mouse. I think about a cute outfit I have and how I’ve really wanted to do this thing. I start imagining how fun it’s going to be and then the darkness creeps in. You’ll look fat in the outfit, your hair is bright so everyone is going to stare at you, and think you’re weird. You haven’t covered that one tattoo up yet so everyone is going to notice and make fun of you. Your face looks really fat, shave your legs, fuck! everyone is going to think you’re nasty, you were born in a girls body, ACT LIKE ONE, you’re not genderfluid you idiot you have long hair, you have giant boobs! God you’re so fucking stupid, your Dad would be so embarrassed. I hate myself so much that I shrink into myself and make an excuse as to why I can’t go anymore. I could just tell the truth, but they won’t listen. I’ve tried to be open about mental illness and they say they understand but get mad when things are present. Your anxiety is making your IBS flare so hey, you’re not lying if your stomach hurts, just leave it at that. I stare at my phone and unanswered texts, words floating in my mind but I can’t get my fingers to type, i mentally prepare what I am going to say in response and rehearse it a thousand times before I don’t even know if my words are worth it anymore. I’ll probably be too late and they’ll dismiss what I say anyway. They’ve gotten their answers elsewhere, mine are probably wrong anyway. People from my safe space text and I can find the words a little easier, no judgement, but sometimes I can’t find the words to exchange with them either. Sometimes a random thought escapes and lands on my social media, a photo I’d been meaning to post or something. I cannot predict my socialization abilities, and making plans scares me for fear of failure, yet allows me the time to mentally prepare myself, even if it means days of doing nothing to save my spoons for a day of something. There are thousands of thoughts banging on my mind, echoing behind my ear drums for a chance to be heard and I’m wrecking myself trying to release them coherently.

I’ve done nothing all day it seems to someone else. But for me, even getting up and doing my chores, getting on the treadmill or running outside to take out the trash are all big deals. Going outside when I can hear people? I’ve overcome one thing. Getting up and cleaning a mess despite radiating pain, another small victory. Running on the treadmill for a bit, a HUGE step for me. Yet I think about the voices externally who put me down and the voices in my own head. You’re nothing, you’re useless, people do that shit every day with no problem, do you want a cookie? My mouth tastes like copper and my tongue sticks to the roof because it’s so dry. I feel like a burden. I think about the voices and faces of those who love me unconditionally. I think about how my little victories help them get through their days. I think about how the meals I make are something they look forward to. How a safe clean house gives them a solace when the world tears them down. How my weird collections bring them joy at times, or my mass of films entertains them. I force myself to think about them and them only, my boys, my tribe, my momma, and even my Dad in the sky. The dark thoughts are suffocating. I smoke a giant dab and laugh as I blow the smoke into bubbles. This is a GOOD day even, because perhaps I started my day being triggered, I may not even answer the door, but just stay buried in dark thoughts. Perhaps my back pain will not be soothed by anything, no amount of weed or therapy or heat will help. Perhaps I can hardly walk. Maybe I’ve got another flare up of my chronic bronchitis. Maybe I threw up blood. Maybe I just can’t stop shitting. Maybe it’s everything all at once. I bury it until it trickles out in little ways or I finally explode into a meltdown.

A day that seems so simple from the outside involved a battle with constant demons in truth. What seems like an easy task for you could be an entire world war for someone like me. Autistic folx have executive dysfunction, so the little steps you follow in your daily life are often askew for us. You know that to go to work you have to grab your keys, open the door, go outside, start your car, and drive. For us, those steps might be missing parts altogether, be reversed, or lacking all the steps aside from beginning or end. The tasks we perform that seem tiny to you, might be massive to us. Every day I battle my mind, and climb many walls in order to function in any sort of way that you could deem “normal.” My victories, no matter how teeny tiny, are still victories. Every day I don’t let the demons win is another day I’ve thrived. I am climbing my own mountains daily, to you they are merely molehills, and nothing special. But to me, somedays just being here and being heard is like winning a marathon. I’m not the easiest person to understand, but I don’t deserve to be vilified because you don’t get me either. My inner circle may be small, but It’s small because that is where I feel heard, and that is where I feel loved and safe. Being jealous of that is ridiculous because you can’t just skip into my life without understand the complexity of it. Just as I am often the quiet observer, it’s your turn to take on that role, to see and understand things deeper. It’s not a personal attack, just a request to dig a little deeper, to actively think in someone else’s perspective.

Stop. Read. Think. Breathe.  Have you learned anything yet?

Drowned in moonlight – On Carrie Fisher.

I have foggy memories of watching Star Wars when I was tiny. I had this habit of laying under the coffee table, and watching films with my chin in my hands. The typical selection included Beetlejuice, Ghostbusters, the original Star Wars trilogy and Harry & the Hendersons. We lived in Japan when I was a kid where Laserdics were on the rise and seemed to take off better than they ever did here. I learned to load the laserdisc player and swap out discs myself, carefully putting them back in their sleeves and staring at the cover art. I wanted to be Carrie Fisher and I would stare at the art of her face, especially on Empire Strikes Back and imagine I COULD be her. I didn’t know that in my future, I would have similarities with Carrie, but ones I couldn’t understand at such a tender age in the mid-eighties.

As I got older, I realized I was different. During my time of early self discovery, I was dealing with heavy things no young person should have to deal with, some I’m still not ready to share and some I’m sharing because of Carrie. When I was a pre-teen, my obsession with Carrie went into full blown autistic fixation mode, I began to read her books even if I couldn’t quite comprehend things she was saying, she was one of my first teachers in the world of mental illness and addiction, especially in Postcards from the Edge. I was struggling with other people’s addictions and how they impacted me at an early age, I was learning that these people were battling something beyond what I could truly understand then, but eventually, I would. Someone very close to me, irritated and completely misunderstanding of my fixations even once led me to believe they met Carrie when they weren’t sober. This person, an adult who was supposed to protect me, then turned to me and said “I was lying because your obsession with her is annoying.” Those words hung with me for decades, they still sting at me. They deep rooted my fears that my obsessions were stupid and worthless and for a while I just stopped talking about Carrie, about what she meant to me. She never truly left me, I couldn’t let go. There was something that kept me captivated and in this deep admiration. Carrie wasn’t anything stereotypical about Hollywood. She was real, she was raw, she was open and honest in a way that I needed to be myself, even at a young age. I wanted to badly to have her gall, her strength, but instead I pulled into myself in all the wrong ways. I was afraid of who I was on so many levels and began a battle with self harm, disordered eating and other struggles I still fight to this day. I was surrounded by a society that judged me for not being normal, the same society that saw Carrie as a joke, who swept her addiction and mental illnesses under the rug because it was so much easier for them just to pretend it wasn’t happening. She still kept speaking, kept opening her mouth, kept fighting. I kept fighting too, but my mouth was sealed shut by stigma, by judgement, by ignorance.

The hush hush life I tried to live, pretending to be someone I wasn’t, keeping mum about the battles I faced only became detrimental to my existence. In high school, I lost one of my best friends, a best friend who also struggled with her mental illness battles and lost her war with bipolar disorder when she was only 17. I turned to Carrie again because I needed to hear words from the mouth of someone who even somewhat knew what Sara struggled through. I turned to Carrie when my own battles brought me face to face with the devil of addiction. It started with alcohol, and I dove into the deep end from there, starting with things like Nitrous and reaching a hellacious point with meth. I thought methamphetamines could help me, I thought meth could make me skinnier, make me cooler, make me better. It definitely made me skinnier by ruining my body in ways I still deal with today. It ruined my mind, it ruined my body, it ruined my friendships, relationships with my loved ones and it won for many years, hell, 8+ years sober now and I still struggle sometimes. I’m not cured, I’m not magically not an addict anymore. It’s still there, and many times I’ve been silenced when I’ve tried to open up about it because people have said to keep quiet, it just wasn’t proper to share. My mental health, my battles and even victories swept under the rug because people didn’t want to have to face that reality. Addiction has a terrible, ugly stigma that surrounds it. By admitting people we love are addicts, we don’t have to make them out to be monsters. People will openly speak of the fact that Carrie was bipolar, but wont mention her addictions. Addicts are seen as the lowest of the low and undeserving of help, like vermin or scum by our supposedly modern society. People think calling Carrie an addict is an insult, and it’s not. It’s a truth. A truth she was very, very open about. If it wasn’t for Carrie, I don’t know if I could ever be as open as I have been, especially recently, about my own battles. I can’t say something like this will never happen to me, and if it should happen, I don’t want it to be swept under the rug. I want it to be talked about, I want it to be open and out there, so people can understand that even if someone seems stable – you truly do not know what they are struggling with. Carrie and her family are the same, and if you know anything about Carrie you would know she wouldn’t want anyone to pretend she was something she wasn’t – and she was an addict, it’s a part of her truth. Billie, in light of it all, released her own statement on things with a grace and maturity well beyond her years.

“My mom battled drug addiction and mental illness her entire life. She ultimately died of it. She was purposefully open in all of her work about the social stigmas surrounding these diseases. She talked about the shame that torments people and their families confronted by these diseases. I know my Mom, she’d want her death to encourage people to be open about their struggles. Seek help, fight for government funding for mental health programs. Shame and those social stigmas are the enemies of progress to solutions and ultimately a cure. Love you Momby.”

By ignoring Carrie’s truths, you contribute to that stigma, you put up walls when addicts are already climbing wall after wall just to speak in whispers. Carrie wasn’t silent, and we can’t be either.

I’m 34 years old now, and Carrie has been a part of my life since I was merely a few weeks old, seeing Return of the Jedi in my mother’s arms. I’m covered in more scars, I’ve fought many battles but that little child who lived in front of the Laserdisc player is still within me, dreaming of the day they could meet Carrie and thank them. It won’t be in this life, but in some universe, some existence, I will finally get to say it. But for now, I will thank her by being open, by speaking out just as Carrie did even in the constant faces of judgement.

I am Josey, I am autistic and I am a recovering addict.

Awareness.

I always just thought I was weird. It’s all I heard in my youth, oh she’s weird, oh she’s morbid. When I was just a little thing, I thought it was fun to be weird, they liked that I was weird, right? The older I got, the more I started to realize I wasn’t the kind of weird everyone praised and celebrate. The typical manic pixie dream girl was the weird everyone liked and wanted, I was the weird no one could handle.

I talked a lot, I rocked on the couch and sucked on a blanket. I would get stuck on subjects, fixated beyond the “norm”, I’d be easily irritated, easily saddened, shocked or angered. I was deeply hurt when people feigned interest in the things I loved. I was just a weird little kid to most, a weird little kid that everyone dismissed because it was easier than listening. I kept talking, hoping some day, someone would listen. Every time I thought someone was going to really hear me, I realized they were truly just waiting for me to stop talking, or waiting for their turn to talk. The older I got, the less I opened up for fear of judgment.

Social media proved an escape for me after a while, when the craze of the world wide web started and well, it’s never stopped. People didn’t have to see me odd little quirks or hear me switch words or stutter when my social anxiety got too overwhelming. Online I could be social even when I couldn’t walk outside my front door. Even then, people wanted faux friendships. I opened up to those who said “I’m here, I care” but it was often too overwhelming for them. I leaned to socialize beyond autism, social anxiety, adhd and crippling depression, but the social cues were wrong. I’d learned not to care either, I stopped listening because no one else wanted to listen, the little patience I had wasn’t stretching anything thinner. I bathed in negativity when it came to others, and I hid away who I was for the longest time. It was easier to pretend I wasn’t mentally ill, than try to explain it to people who didn’t want to understand. Unmedicated, stubborn and raging down my destructive path, I reached the lowest lows.

My life fell apart many times before I would start to line up with the right kind of people. People who weren’t heard in their pasts either. People with scars that everyone judged without ever getting the story. People who just wanted to hug someone and get hugged back. In all my scorn, all of my negative drowning – I’d become the exact people who hurt me from the start. To completely let go, I had to be open, I had to be honest, and I had to face the skeletons in my closet. I had to stop trying to reach some pinnacle of perfection set by others and embrace the weird I WAS, and not what everyone wanted me to be. Slowly but surely, I started going to therapy again, I started getting medicated again, and I started being more honest with the world I lived in. Some people were understanding, things made more sense to them. Others accused me of “bragging” so to speak, of begging for attention and THAT was why I was constantly bringing up mental illness. Bragging, if you will, as if I had won front row tickets to a concert or purchased expensive shoes. There is no bragging in mental illness, but there are days of victory – no matter how small. I ignored those who tried to silence me, and slowly but surely, I realized my life was better without the judgmental sort of individuals in my life anyway. I’m not perfect, hell, I’m far from it. I’m autistic, so my daily life is always on a spectrum. One day I could be a social butterfly, capable of running and hiking and taking on the world. Another day my motor skills are limited, I can hardly form words and my brain feels like it’s floating in a jar. This all contributes to how my anxiety will react for the day, or my depression. Some days my eating disorder rears it’s ugly head and I don’t eat properly. I’m surviving though, day by day, month by month and all because I’m forever on my path of self discovery and understanding.

So many people will say they understand just to quell a situation, to move along conversation, or to appease their fellow man. We stopped actively trying to understand long ago, when holding up our own images and collecting followers seemed to matter more. In feeling completely misunderstood in my own life, I sought to understand others in the best way I could, by listening…and sometimes not listening at all but merely being there, existing in a plane of knowing – knowing someone else just gets it. We have to stop just saying I understand when we don’t, and we have to be open to learning more about other people so that we can all feel like we have a place in this world. It’s as simple as “I don’t understand exactly what you’re going through, but I’m here in anyway I am capable.” It doesn’t mean dedicating your entire life to someone, but it means opening up and accepting that not everyone is “normal”, not everyone operates the same, and we’re all fighting our own battles, our own demons. Sometimes we can simply ask to be taught more, and I cannot tell you how much it means to me when someone says “I don’t understand exactly, but please tell me more so I can understand BETTER” and it can mean the world to someone else who is struggling. Sometimes just that hand to hold until the words can come is everything. Sometimes just being in a room in silence with someone is the comfort they need.

One of my favorite shows, Penny Dreadful had a recent scene/line that stood out to me, “Do you understand that you are ill? Not bad, not unworthy, just ill.” and it resonated with me. We are so quick to bring friends soup when they have a cold, or suggest abuela’s home remedies but as soon as someone struggles with mental illness, we turn our backs, often so quickly we can’t even tell we’re doing it ourselves. At the end of the day, the mentally ill are just people who need a little extra help now and then, just as someone might need vitamin c to quell an oncoming cold, sometimes a voice in the dark is medicine all it’s own.

The force will be with me, always.

I was born into Star Wars. I was born a couple weeks after the theatrical release of Return of the Jedi, with a big brother who was a toddler when A New Hope came out and before he could even speak properly, was sucked into the force. Jedi was my first movie in the theaters, and my mom always marveled at how I was such an easy baby to take anywhere and I pretty much chilled during the film if I was not sleeping, with my limited newborn skills. Star Wars was a part of my household always, in hand me down bed sheets and action figures that had seen better days.

I was always different, always weird, always in some other place of my own mentally, as I grew older, it grew stronger. I found some kind of solace in Star Wars, and looking back I realize it was my first and longest autistic fixation, followed by Jurassic Park. I used to shout with pride that I was undefeated at Star Wars trivial pursuit to new neighborhood kids everytime we moved, but most of the time, it fell on deaf ears. The one friend I ever had in my youth they I ever felt understood me was Liz, a girl who also fell in love with the force in her own special way, and together we’d play in the trees on the edge of our neighborhood like it was our own Yavin 4. Before Liz, the only real friend I had was imaginary, someone I created myself named Ashley. That’s how isolated I was, because I was such a weird fixated little nerd to the other kids. It wasn’t long before her parents careers caused Liz to move away and all I had was our mutual love of jedi warriors and space pirates. When I went through the times in my youth I’m still learning to work past, I had Star Wars. Whenever I felt like I wasn’t proud of being a girl, I remembered how Princess Leia led a rebellion, helped saved a galaxy and got a handsome slightly shady smuggler to do a moral 360.

As I grew older, my mental illnesses began to slowly receive diagnosis, and I was ashamed, afraid. I kept looking back to Princess Leia, and Carrie Fisher, and learned of her own journey with mental illness, and at a young age I learned I couldn’t always hide who I was and someday would have to face it all. As I grew and faced the demons of my mind I’d locked away, I looked upon Carrie’s humor, strength and honestly regularly for inspiration. She was never just a pretty girl in a metal bikini to me, she was a warrior beyond alderaan, beyond tattooine, and beyond anyone who told me I couldn’t fight it, told me what I couldn’t do. Carrie was one of the voices telling me to keep going.

Friday, The Force Awakens comes out. I’m filled with a range of emotions. I try not to live with regrets, but I regret my Dad not being here. He passed in 2005, 10 days before Revenge of the Sith. Even in the hardest points, we always had a mutual love of Star Wars and Harrison Ford, even when we didn’t know how to speak to each other, we could still smile in the end of a New Hope together or cheer in Jedi when Leia takes out Jabba. Back in those days when used to play around the neighborhood that I was in that galaxy far far away, I would often imagine I was the daughter of Han Solo and Dad was Han. My mom was Leia and somehow the dark side had been resurrected in me and I had to save us all. I don’t know Rey’s parentage, but just seeing this universe expand beyond Return of the Jedi timewise in film is something I have waited my entire life for. This is something I absorbed through comics and books, something I’ll experience in a whole new way this friday, a new take on a universe that was there when I had nothing, isolated on my own Jakku, in the prison of my mind and traumatic situations. The galaxy that was the drive behind my battles even at a young age. This weekend, the force awakens in us all, and I cannot help but be excited, though sad it won’t be shared with one of the people who gave this universe to me, but I know my Dad will be looking out for me in Han Solo’s smirk and Chewbacca’s loyalty. My life has changed greatly since that first time I saw ROTJ in diapers, but the one thing that has never changed is my passion for this film series that captures a magic that can never truly be explained. In the darkest times, there was always the light of a saber in my heart, and the power of the force driving my soul. I know I’m going to cry Friday, as a dream of mine finally comes true in the release of this first film of the new trilogy, something I’ve waited so long for. But I will also be crying because the broken little girl who has nothing but Star Wars, is finally in an okay place, finally at peace with her light and dark side.

You can’t block reality.

When I first wandered onto the word wide web at the tender age of twelve, there were plenty of people I should have blocked but in my naivety, I talked to them. I was sexually harassed one too many times and opening myself up to strangers I definitely shouldn’t have. I learned my lesson quickly, but there weren’t people to really explain the etiquette of the internet aside from generalized warnings like everyone is a pedophile (which seemed to be startlingly true to me, going into television show and movie chatrooms and ending up getting private messages from those who smelled my age on me even over the miles) and be nice. Really, that was it. Many of my friends weren’t on the internet except to play games here and there or research for school, in reality, when we didn’t like something someone did, we told them, we passed a note and said what was on our minds.

We don’t say whats on our minds at all anymore, at least not face to face, not mouth to mouth, not even in a private message. It’s all subtweets, sub accounts, and shit talking behind backs. We have lost the ability to socialize, buried in what we can pretend to be on the internet. Time and time again I see people create a persona for themselves on the internet, but in person, the facade comes tumbling down and we see the terrified, raw them, that lashes out in fear of exposure. Why are we like this? Are we too blinded by faux perfection that we’ve completely lost touch of our realities?

Socialization in general is difficult for me. There can be days at a time where I cannot even make a peep other than a grunt of disapproval, DAYS. No words,  I turn to texting as a way to communicate, but it’s often short, frustrated, distant, if at all. I put on a front for those who don’t live with me, trying to act “normal” yet they don’t know I’m locked in a cage of my own being. I have acquaintances who can’t stop talking long enough to even hear themselves think, and it’s sad. You wonder if they’re ever really listening or just waiting for their turn to talk. Being autistic, I have to often remind myself to listen, to really take in people’s words. Autism is often described as a selfish disorder, because it seems so from the outside. We often cling to our own interests and what we know because that is what we are capable of making conversation about, small talk is terrifying, vomit inducing even, so we talk about what we know. I keep this in mind, and try and hang on to every word said, knowing that people tune me out often, too tired of hearing about the same show, or how my Dad died or what kind of dinosaur I think they might be. I switched roles, I realized I wasn’t listened to, and still am not often at all today. So, I started really listening. And in that, I stopped blocking and muting people on social media. I’m not really a subtweeter, people often take what I say to a personal level – but never actually ask if it is. It’s not. Sometimes I randomly think back on a social situation from my past and vent, sometimes I talk about people that aren’t on social media, cousins, friends I am frustrated with and don’t use media (still a shitty thing to do, and something I am trying to curb) and so on. A lot of times I make blanket statements in frustration about things that don’t logically make sense that people do, as I nitpick society a little more. I’m guilty of negative tweets that can be taken personally, I am, but damn do I wish we were more open to talking about how we feel without being so terrified of reality, of people’s reactions to the truth.

Back into perfection, we’re all pretty driven by this ideal set for us by society. Smile all the time, don’t share your drama, be good looking (or white), have some sort of “talent”, blah blah blah. I used to talk so poorly on people who were negative on social media about their own lives, when often I was doing the same. Being open about your mental health and discretions is like a plague to some people, who claim they “hate drama” and yet thrive on it, living in subtweet after subtweet. When I was younger, if you didn’t like some one, or their actions, you just didn’t deal with them. Now we live in a world of half assed friendships where we cling to avoid confrontation. Twitter has a mute button now, where you can mute people and pretend you have a friendship. I get it if you don’t want to be spoiled on a favorite show for a few hours, but if someone bothers you so much that you mute them constantly, just fucking unfollow them. Yes, I said fucking. Because it’s so damn infuriating year after year to see people I care about turn pettier and pettier and forget how to be decent people. I’m still learning how to properly socialize day by day, and it’s sad that even with autism and crippling social anxiety, I am still today more willing to just unfollow someone than block them and talk shit. In the past year, I’ve learned a lot about friendship and relationships. I grew the hell up. Back on perfection, it’s something I’ll never be, but do I want to be? No, not if it means wearing a mask and pretending to be something I’m not.

I unblocked everyone I had blocked and I haven’t looked back. I never turned to the mute button myself, because it infuriates me that people can’t just unfollow and move on with their lives, and brag about how many people they mute. But I unblocked people I had blocked for the stupidest, pettiest things. I unblocked people I was no longer friends with, if they want to stalk me, let them, I have nothing to hide. They are a part of my past, but not my current life and therefore blocking them is just dwelling on the negativity of a situation. Unless someone is threatening me, my loved ones, or being vulgar and harassing me, I’m not going to block them. We all have different opinions, no two of us are alike, not even twins. Part of what makes friendship interesting is the parts of us that differ, that can debate and give a different side to the story. I’ve tried to fit into people’s packaging for me far too many times, hearing that we’re alike and trying to uphold their vision of me and failing, and I shouldn’t have to guilt myself for that. As I said before, I’ve grown a lot, and I’m still growing. Still trying to be a decent person. This last year I have strengthened so many friendships, by truly treasuring the people who open themselves up and expose themselves. The people who show their yin and yang. We all have our darkness, but too many people take that as an excuse to be mean or cruel. Sometimes we as humans just grow and change and no longer fit each other’s lifestyles, it doesn’t have to always be negative either. The internet has truly become a place of bullying, where making fun of people, where ganging up and talking shit have become the norm. I have unfollowed a handful of people this year alone just for acting better than others because they pride themselves in being an asshole. Being sarcastic is one thing, but constantly pointing out people’s flaws and not seeing your own is another. We’re all too stuck on that vision of perfection. Stop it, stop crying and whining about follower counts and who blocked you, when you’re just doing the same. Talk to people, and if we’re friends, talk to me. Tell me if you have a problem with me, ask me if you think my anger is driven towards you, because you may be shocked to find out it could be something completely invisible to anyone but little autistic me. Open your minds, open your hearts and open your damn mouths. When did we stop learning how to speak?

There have been too many times where I struggled for days to form words to speak, so if you want to silence me? Get out of my life. Stop silencing people just because you can’t understand them, and try to actually understand. Because you can’t block reality, you can’t mute the truth, and you can’t hide who you truly are forever. Thank you.

 

So you look to your guardian angel.

It’s just the ghost of what you really want
And it’s the ghost of the past that you live in
And it’s the ghost of the future you are frightened of
So you look to your guardian angel

I don’t try to focus too much on my life before I became a fan of Lily Rabe, sure that sounds cheesy, maybe a little cliche, but it’s helped me in many ways. Not to discredit any beautiful moments & good memories of my past, those I keep in a safe place in my mind. But it’s not safe to live your life in the past, not the negative aspects at least. I have often lived in my past, swallowed by the things that happened, the people who hurt me. I lived in negativity – scorned, bitter, broken, angry, terrified to truly live my life. I’m autistic, I fixate. I fixate on too many things I shouldn’t and ruminate on every social situation I failed in, or every time my life went sour. This is not to erase any of the good people who came into my life either, but most of them are still with me to this day, still cheering me on. They haven’t even left me. Sometimes people do grow and change though and leave our lives. In the past, I took these things far too personally. Now, things weren’t completely horrible back then – there is always someone who has it worse, but they weren’t so great either. I was in too dark a place to appreciate any of the good that WAS there. I hurt people around me because I was so hurt myself, I didn’t know better. There were times when I was vicious to those who tried to help me, stubborn with trust issues and angry words. I was fighting so much, but I was tired, I was weak and I was fading and losing all of my hope fast. I would try and tell myself that the only way to go from the bottom was up, but it didn’t matter. I kept digging myself deeper and deeper, even if I told myself I was trying. I wasn’t truly trying though, I was making excuses.

When American Horror Story began, it was the beginning of a time of great change for me. I had every opportunity to change my life, but I didn’t know it. I put too much faith in other people, but at the same time, my life wasn’t anyone else’s responsibility but my own, even if I am autistic. If I didn’t let people disappoint me, they couldn’t anymore. It’s hard when you map out everything in your mind compulsively, and things often do go as I imagined. But I had to learn to cope. I needed to see that not everything had to have a logical explanation, and not everything was a puzzle I could solve. I also needed to stop expecting too much from anyone else, who also have their own lives to live. But it was all easier said than done. I needed a kick in the rear, a slap in the face. You don’t expect the ghost of a madwoman is going to change your life, but Nora Montgomery did. Lily is a captivating actress, there really aren’t words to describe her. Her range is broad spectrum of emotions, people, experiences and when she plays a character she really brings them to life. Nora was lost, and so was I. She was an ignorant product of her past who refused to let go and grow or change. Stuck in her ways, she lost it all. I was losing every piece of myself, slowly but surely. The entire cast of American Horror Story has impacted me in some way, but Lily saved me from the darkness that was consuming me, or at least, she motivated me to save myself.

Over the last four years, I fought to understand myself and my place in the world. I’m still learning, still breathing, but no longer just getting by, I’m thriving. For years I had extreme difficulty leaving my house without my specific routines, completely regressed. I’d escaped an abuse relationship that kept me under lock and key and I wasn’t allowed to do anything. I spent a long time ashamed, a victim, spiteful, loathing & blaming myself for every abuse I’d ever faced in my life. I’d gone through waves of overcoming, but they didn’t stick, didn’t stay. I’d keep falling back into the past and what I didn’t do right, how I messed up, or I’d switch the blame to the other parties and rage internally at them, externalizing that rage in ways harmful to myself. I was learning to just breathe again, to stop harming myself emotionally and physically. I immersed myself in nature, in friendship, and started to appreciate the little things. I didn’t have to wear my pain on my sleeves and advertise it to the world. I didn’t have to announce my past or pain to anyone, those who truly cared would be there for me, and anyone else I didn’t need to share my saga with, Every day I grow and grow more, and everyday I think about the spark in me that Lily lit. In a way, it’s like I think “what would Lily do?” in situations where the negativity overwhelms me, when life, work, college, responsibility all seems to pile up. I don’t take it out on others or lash out or lock myself away any longer, and when I do occasionally start to lose my footing, I can ground myself, learn and grow. I find my inner peace and embrace the little things in life that make me smile. Sometimes, I just listen to an audiobook Lily did, or watch a film she did and I am filled with motivation and inspiration.

I once was a girl locked away in a cave of shadows, but Lily showed me the way to my own success, she tugged me into the light. My brain will always be wired a bit different, I cannot change that I am autistic, or that I am dealing with varied mental illnesses. I can change how I help people understand me, I can surround myself with positivity and not allow myself to be urged by toxic behaviors. And I did it. I started taking control of my life.

Last summer, I finally met Lily Rabe for the first time. My fiancee Jackie, the woman who has been by my side through hell and back, gifted me with an experience that rewarded me for these battles. I not only got to see her perform in Much Ado About Nothing, filling my long time Shakespeare loving heart with glee, but I got to speak with her. I unloaded a lot on the poor woman that night, but she never turned her back on me and her words of support and encouragement have strengthened my will. The girl who could barely leave her front doorstep anymore, had flown across the country and met her guardian angel. I met her a few other nights over the trip, and no matter what, she was patient and kind. Since that June, I never stopped. I’ve met Lily a few times and each time stands out in it’s own special way, one time especially I remember handing her a gift with shaking hands and I said you probably think I’m crazy, she firmly took my hand in hers and said “No one thinks you’re crazy.” It’s fueled me. Crazy was the word people threw at me like an insult when they didn’t understand me, and she made me feel like I wasn’t a disaster in one small moment. I found stardust and magic in times filled with despair, I began to stand up for myself. I got help for both my physical and mental needs and I’ve lost weight and have a handle on my disordered eating. I finally had the surgery necessary to reduce my chronic pain and am getting answers daily. I feel like a new me, a new Josey, not a victim but a survivor, a warrior. Anytime I get to see her, it’s always like a reward for my battles. I have my good days, and my bad days, but I’m not longer stuck on what happened, and now I live in the now. What can I do NOW to fix the situation I’m in? How can I remain positive? Through Lily I have strengthened friendships, and fixed rough patches. I’ve also met an amazing group of women from all over the world who have also been impacted by Lily. My Tribe. Women who have their own battle scars and fight songs. We’re united by so many strong bonds, and have Lily to thank for it. We are all impacted by her and her characters. Not just from AHS, but her film roles as well, from Redemption Trail to The Toe Tactic playing Mona, the character of hers I truly relate to the most.

Every time I get to see Lily, I’m healthier, happier and I’ve leapt over another hurdle. I am still fighting my battles, raising my victory flags, walking towards my place in the sun. When you make a valiant effort to let go of negativity, things really do change for the better, perspective is important. I often see things in black and white being autistic, but people like Lily and my tribe help me see the big picture and every color of the spectrum of my life. I don’t have skeletons in my closet anymore, I’ve buried them in sacred ground and said my peace.

I’m not perfect, I never will be any normal sense of the word perfect. Quirks and all, stumbling on words, hand stimming, rocking and more. I’m cool with myself for once, and that’s what matters. I’m my own kind of perfect. If you ask Lily Rabe, she’s far too humble to ever call herself any sort of perfect. If you ask me though? She’s pretty damn close.

You can’t teach an old dog new tricks.

I’d heard this my entire life. Being autistic my mind automatically goes to the most literal place, an old family dog, dumb as a doorpost, who still can’t learn to sit. We as a society have deep rooted this belief that humans can’t change. The old adage is cemented within us all, people cannot and will not change. We’ve all been scorned by people who continue to succumb to the same toxic, negative behaviors. We see people hurt us and themselves time and time again, we see them fail in relationships, offer advice and see them completely disregard it. But how many times have you done just the same? How many times have you trampled on someones toes, crushed their spirit, broken their heart and not even realized it? Humans are selfish beings, in the end it’s all about ourselves. This can be a good thing sure, but it can also be an awful thing. People can change, but in the end, it’s all up to the individual and their willingness to commit to that change.

I’m still learning about my own problematic behaviors. People are so willing to call out when someone does wrong, talk behind their backs, vent to other people, but are often too afraid of confrontation to be open with the person at fault. Now of course, some people screw up so badly they should have the common sense to know how and why they screwed up. If you physically assault someone, you should know that it is wrong, come on. Murder? Also wrong, but you should know this. Being autistic, socialization is one of my biggest issues. My parents had a late diagnosis with me and so when I was younger, a lot of my problematic or selfish behaviors were dismissed as just being weird or not targeted head on. I was just told to be quiet, chill out, etc. I could only talk about my fixations at times, and would always bring it back around. I still have issues processing other peoples emotions, but through my own therapy and counseling other young women with mental health concerns, I have learn a lot more about emotions in general. In the lessons I learn about my own issues in socialization, I learn how to handle my problems with others. Honesty is the biggest hurdle, and targeting my own emotions and reactions and describing them isn’t always easy. It’s hard to explain myself, and I am often misunderstood, so finding that middle ground can bring on many issues in my friendships. Often people think I am mad at them, that my silence must mean I am cross with them, that if I am active on some form of social media but haven’t responded to them, I must be angry. Sometimes, all I can do is focus on my fixations, and there are those who do not understand it. There’s often backtracking involved, but I have to remind myself that other people have emotions and concerns and I have to try and consider that. As an adult with autism, I am just now learning things in my people skills that are “Wrong”, that a child might be learning. But through patience and honesty, I am growing.

Ive learned the most from those who have fucked up and owned to it. People who led more toxic lifestyles who overcame and continue to better themselves. Easier said than done, but I have seen bullies become best friends, I have seen monsters become men. I’m not saying Charles Manson can suddenly stop being manipulative, that’s deep rooted psychological issues that stem from his upbringing and a whole lot more. But I am saying if you are conscious to what you have done, realize it’s wrong, why it’s wrong, and make an effort to grow from it and be a better person, you have my respect. Every day you have the chance to wake up and change your life, you have the ability to wake up and grip your spoons and decide where you will divvy them. Perhaps you live a life with no spoons and endless opportunity, run with it. Don’t live life full of excuses. Be kind to those weaker than you, whose shells may crack a bit easier. Don;t assume what is easy for you is easy for anyone else and always keep an open mind. Some people don’t have the ability to get themselves out of a scary situation immediately, but they are trying, they are working towards it, you can see the fire in their eyes. We all have our battles but how you chose to take on the war in the end, how you decide to triumph is ALL up to you. Be a warrior for positive change. There will be people who come into your life and derail this. Some will learn from you, some wont. I’m a firm believer in karma, and have seen it in action enough times. You will come across people who take advantage of your kindness, I still do to this day. People who take put yourself first to the wrong degree, they know how to take, take, take, but never give credit where credit is due. These are the sorts of people who turn their backs and speak poorly about you as soon as you don’t cater to them anymore. Don’t let them defer you, but no longer let them control you. They’re the keepers of their own change, and their self absorbed behavior will lead them nowhere in the end. There will be those who will not believe a word you say, no matter how knowledgable in your field or subject, and will never admit it when you’re right. Learn to admit when you’re wrong, lead by example. Perhaps my hippie passive “bullshit” seems whack, but someday, it will all make sense.

Be that old dog at the pound that no one thought could learn new tricks and wow them all, learn to dance, learn to howl at the moon and most of all, learn to love unconditionally, THAT is the best change anyone can make. Learn to love, learn to forgive, and learn to grow from your mistakes. This old dog has learned plenty new tricks, what do you wish to learn?