Four years ago, after another long battle with my arch enemy, Pseudomonas, I weighed 112 pounds at best. For my height at the time (five foot three inches), I was alarmingly underweight.
But, four years later, I now weigh a whopping 142 pounds and stand somewhere between five foot five and five foot six. Most of that weight lies in my muscles, giving me authentic muscle tone for the first time in my life. Words cannot express how glorious it feels to be so heavy, so strong, so amazingly healthy. So remarkably normal, for the very first time in my life thus far.
I have seemingly boundless strength and energy, which I use to hike for miles up and over foothills and hogbacks, down into canyons and valleys, across wide open prairies, through creeks and rivers, along mucky banks of ponds and reservoirs. The energy and stamina Trikafta has given to me are astounding, to put it very lightly. I’ve said it once and I’ll say it a billion times more; Trikafta is a miracle unlike any other I have experienced yet.
However, I still get tired. Maybe not while I’m out in the wilderness working out my heart and lungs until I feel nauseous and woozy (which usually doesn't happen until a few miles of nonstop moving). Maybe not while I’m at home doing housework or hanging out with just a few close friends and loved ones at a time. Maybe not when I’m out driving on quiet roads or riding horses or looking after the animals at the shelter. But, my energy still gets sucked out of me at times, particularly when I’m around lots of other people.
It's the kind of tired that makes me feel fifty pounds heavier, slows down my movements and thinking, and makes my eyes bloodshot and itchy. It's the kind of tired that sleep alone can't fix; it takes me a couple days of solitude and rest to fully recover after being in a classroom full of students for five hours a week. It's the kind of tired that pisses me off and makes me wish I was "normal", as well as terrifies me and makes me question if I can ever really function in the real world.
Cystic Fibrosis is no longer my biggest hurdle health-wise. Rather, being autistic is. Not that being on the spectrum is inherently bad or wrong. It isn’t. In fact, like professors Tony Attwood and Temple Grandin, or Amazon and Google (which both specifically look for autistic people to work for them), or naturalist Chris Packham, or even my current therapist who specializes in helping autistic women, I think being autistic is largely advantageous and a very beautiful gift.
But, like all things, it has its cons. Specifically speaking, I have to work extra, extra hard to act “normal” around lots of “normal” people. In other words, I have to hide my autistic traits to make it through almost any social situation. And that just drains the life out of me.
Apparently, I’ve always been pretty damn good at “masking” my autism. I mean, up until late last year (2020), psychiatrists and psychologists alike, many of whom with decades of experience and prestigious degrees, said I was just anxious as a result of past experiences and current struggles. With time, therapy, and effort, my anxious, introverted ways would disappear almost completely, and I’d grow into a healthy, “normal” adult. Of course, this meant pretty much everyone in my life saw me as a fixer-upper, for lack of a better term, including my parents and grandparents. While everyone had their hearts in the right place, oftentimes what they put me through to make me “normaler” did much more harm than good.
For instance, my mom would thrust me into massive social events and sleepovers with little or no support, and would expect me to go up to random people and strike up a conversation. Obviously, being a clueless middle schooler at the time, my attempts to make friends and not come across as an awkward, stuttering mess rarely went all that well. My mom, not quite sure what to do or say to me, would glare at me for being “embarrassing” and “offensive”, without giving me an explanation as to why. Unbeknownst to her, I had no idea what I was doing wrong. I was just doing my best to mimic what other people said and did, in hopes of passing my mom’s tests and not coming across as a rude, stuttering, shaking little girl.
Eventually, after years and years of trial and error, I managed to figure out just enough social norms to hold a decent, albeit slow and awkward small-talk conversation, as well as order my own food in a very nervous, stuttery way. But, beyond that, I was pretty much hopeless.
It would take me many months of interacting (or, more accurately, observing from a safe distance) with one person to feel comfortable and confident enough around them. Even then, if my mom was around, she’d always find something to scrutinize. Again, she meant no harm, but her constant nitpicking really put a dent in my already shitty self-confidence. Especially, since she would rarely specify what I did or didn’t do right.
However, since my official diagnosis last year, things have begun to change for the better.
My mom has become much less nitpicky. Well, for the most part. She has her moments, but don’t we all? My extroverted family members, both close and distant, have stopped trying to turn me into a social butterfly, and stopped taking so much offense to my quiet, inquisitive, and often blunt nature. In return, I’m starting to learn how to better interact with “normal” people in ways that don’t completely exhaust me or force me to suppress my autistic traits, while also accommodating "normal" people traits (such as, going to a friend's birthday party even if I think it's very uncomfortable, and allowing people to hug me without stiffening up). But, that’ll take years, if not a lifetime, to figure out.
In the meantime, I’m faced with my greatest challenge in regards to my ASD diagnosis yet: deconstructing years and years worth of self-hatred and doubt, and learning to love and accept who I am. That’ll require me to go back in time in my mind; back to every instance of bullying, discrimination, and downright hatred from others I have received. Turns out, I wasn’t bullied just because of my Cystic Fibrosis and the physical symptoms I was plagued with during my childhood. Sure, being small and sickly didn’t help protect me against bullies. But, my inability to innate pick up most social cues, my lack of interest in others and intense interest in the details of the world around me, my extreme shyness and fears, and my very different ways of thinking and learning, are what made me a major target of bullying and abuse.
Now, as a healthy, college-attending adult, I must relive those nasty past experiences from my childhood (with the help of a trusted therapist, of course), process them, and compartmentalize them. All so that I can actually heal for once.
Sure, I will always have scars. I will never be truly cured of my past. But, I may finally be able to live my life without being constantly bogged down my my own self-hatred, which actually may not be coming from me. What I mean is, the bulk of my negative thoughts towards myself and my Imposter Syndrome are rooted in what people told me in my past. Processing and compartmentalizing all of the horrible shit people said and did to me, should really help me boost my confidence and bring most of my internalized self-hatred and resentment to heel.
Again, that will take years. It may even take the rest of my life. But, I’m determined to accept myself. Not just know, but feel and understand in my heart that it’s okay to be Autistic. Especially since being Autistic isn’t actually bad or wrong.
Autism isn’t at all like Cystic Fibrosis or anxiety. It’s just a different way of thinking and processing the world. The world needs people like me, as well as people with ADHD, and people with Dyslexia, and people with Tourettes, and every other different way of existing and perceiving the world. Of course, the world needs “normal” people too. Without neurodiversity, we’d probably still be living in caves hunting big game with spears. We must embrace neurodiversity, instead of fearing and institutionalizing the “different”.
Cystic Fibrosis can still go fuck itself though. I’m not quite sure it has brought much good into this world at this point. It’s probably killed off someone who would’ve cured cancer had they survived childhood. Anyway.
With all that said, my feelings of self-hatred and resentment towards myself (or more specifically, towards the things I was born with) are still very much valid. After all, I have every reason to believe life would’ve been infinitely easier had I just been born “normal”. Even if I turned out as stupid and reckless as Florida Man, at least I may have been much happier and much less doubtful in life. But, being “normal” comes with its pros and cons too.
Had I been “normal”, I may have been much happier, but I probably would’ve also ended up ruining my life by throwing a gator through an annoying neighbor’s window at three in the morning. Or died of covid because my dumbass refused the vaccine. Or both.
Or, perhaps I would’ve just been another carbon-copy of every other middle-class American. I would’ve gone to school all year long, rarely getting sick or having to go to numerous doctors’ appointments. I would’ve had a much easier time making friends and learning social rules. My biggest hurdles in life would've involved me getting my heart broken a couple times, or maybe a particularly awful (though not life-threatening) flu. I would’ve graduated high school without having to attend four different types of schools to do so. I would’ve gone to college or work, had a family, retired after several decades, and died peacefully in a nursing home. At least, I think so.
Regardless, I likely would’ve spent my life living in the moment, blissfully ignorant of most things that now bother me. At least, I think I would. I don’t know for sure. I’m just speculating.
Yet, I can’t just press a giant “reset” button and live life all over again as a much more “normal” and “average” person. I must live my life and give it the best I can, even though I am anything but “normal”.
Besides learning to love and accept myself, and heal from the past, I’m making new memories each and every new day. I’m doing remarkably well in college (despite how tired I get being around others, and all of the complex math in Astronomy). I’m getting more and more comfortable driving and talking to strangers each and every day. I think I might even be making a few new friends, while maintaining the close friendships I’ve already made. My physical health is nothing short of miraculous, and with a handful of prescription “chill pills”, therapy, exercise, and coping mechanisms, my mental health has started to improve.
Still, I’m not yet satisfied. Learning to accept myself doesn’t just mean processing my very dark past in therapy and unlearning twenty years’ worth in internalized ableism. It also means to stop comparing myself to other people (especially to “normal” people, and people with health conditions different than my own), and chewing on every mistake I’ve ever made over and over again, never forgiving myself, or reveling in just how much I’ve grown and changed and matured over the years.
After all, even “normal” people say, “you too” to the waitress sometimes. Even “normal” people run over curbs sometimes. Even “normal” people say things that come out very wrong. Even “normal” people stub their toes against furniture. Even “normal” people get colds and flus. Even “normal” people sometimes eat something that doesn’t agree with them. Even "normal" people don't get straight A's in school. All of that and more is just part of being human. And, no matter how alien I sometimes feel, I am still a human being. Worthy of being treated like everyone else.
Being Autistic doesn't change any of that, and my shortcomings and mistakes can't be blamed on the fact that I am Autistic. Like everyone else, I'm learning, growing, and simply being a human being. Like everyone else, I still expect myself to be able to learn and grow. I still expect myself to figure out solutions to problems I previously thought were all caused by PTSD or anxiety (such as, my ability to socialize with others). As a result, I have made tremendous progress over the months and years towards my goal of not just being able to socialize with others and get along with them. But, being able to do that without passing out the second I get home and lay down on the couch. Now that I understand that I'm Autistic, and not just traumatized into being anti-social, I think I may just be able to solve this crippling problem of mine. All without killing off the good aspects of my Autism.
Indeed, there are many things that my Autism helps me with (it goes back to there being pros and cons with everything). Without Autism, I doubt I'd be nearly as creative and determined to be successful as I am. Without Autism, I doubt I would've been able to take care of my Cystic Fibrosis (because keeping Cystic Fibrosis at bay means following a really strict routine and remembering all of the things I must do everyday. Apparently, neurotypical CF patients really struggle to do all their treatments, and often outright rebel against doing them for whatever reason). Without Autism, I wouldn't have been able to survive twelve years of hell, er I mean, school, let alone graduate high school on time.
In general, people with Autism tend to be really good at many things that don't involve social interactions. In general, the Autistic mind is very logical, often to a fault. I'm much better now, but for the longest time I never understood metaphors or idioms. I just took them way too literally, because that's just how my brain apparently works, which is like a computer. Most computers don't understand sarcasm or idioms. If you code into a computer something like, "make a million copies", it will literally make a million copies, and not just make a bunch of them like what people really mean when they say "million" in a casual conversation. See what I'm saying?
That's a huge reason why social interactions are still so hard for me. It takes me twice the time and effort to translate idioms instead of take them literally, and I still don't always get it right. Sometimes I still do squint my eyes and say, "Jazz it up? But, I don't like jazz."
Of course, it's not just idioms I struggle with like this. It takes me extra effort to translate sarcasm, subtle body language and social cues, and even tones of voice, than it does for a "normal" person to do. Let alone, properly mimic them. And, don't even get me started on etiquette. I'm a PR nightmare!
But, while I am often socially inept, I've always been an extremely fast learner when it comes to non-social stuff. Like I said, my brain often interacts with the world the same way a computer does. Maybe I don't always get sarcasm, or I piss people off when I come to a casual (though formal) event in my camo hoodie and put my elbows on the table. But, I am really good at solving complex logical problems and working with my hands.
