In the eyes of society/the government, I am considered disabled, so my situation is both complicated and unique. If I were neurotypical, I would never have been able to pursue my education (my student loans were forgiven because I can’t hold a “real” job or function like a “normal” person. I could never afford to be a full-time writer if I didn’t have Asperger’s, but if I didn’t have Asperger’s, I probably wouldn’t BE a writer and it would be a moot point anyway. Yet… I am at a very distinct disadvantage when it comes to money—if I can’t publish my books and become financially independent, I’m basically screwed up the ass when the day comes that I no longer have my parents (our living situation is mutually beneficial—they get a live-in housekeeper/farmhand, and I get a place to stay). I mean, if it weren’t for them, I’d probably be living in a cardboard box under a bridge already. I can’t understate the impact, both good and bad, that my disability has had on my life; it gave me the freedom to choose art, but in a sense, I have to live vicariously through my art because I don’t get to experience life as a “normal” person. Oscar Wilde once said “She lives the poetry she cannot write,” but I guess I write the poetry I cannot live, haha. That’s just one story and one perspective, though, and it’s a real tragedy that so many truly gifted people do not have the financial means to pursue their dreams and become artists.
My friend Julie has a blog, too, and I definitely recommend checking it out!
I live with a neurological condition that affects every aspect of my life. I am disabled, and in many ways, I feel disabled, which sucks. Now, there is nothing wrong with being disabled–like having blue eyes or brown eyes, it is what it is. It’s neither good nor bad. It just… is. It’s a part of me, and I can’t change it, so I’ve learned to accept it, but I do have days when I wish I could just be “normal” like everybody else, if only so “normal” people would “get me,” if only so “normal” people would remember that I am in fact a full-fledged adult.
I am autistic, and there is no denying it. I am thirty-six years old, and out of necessity, I live with my parents. I am disabled, but I am not five years old, and under no circumstances do I appreciate being treated like a child–neurodivergence does not negate adulthood. Ever.
You may not always understand why I act the way I do, and that’s okay. I don’t always understand it, so I definitely don’t expect anybody else to figure me out. Sometimes, I react to things that might upset or bother me in a manner that might seem, well, childish to you. I can’t help it. I can’t help it any more than a paralyzed person can help their need for a wheelchair. My brain functions differently from the brain of a neurotypical individual, and there is not a damn thing that you–or I–can do about it. I’ve had to accept it, so guess what? The people in my life have to accept it, too. If you can’t do that… kindly screw off. I shouldn’t have to apologize for something over which I have no control.
So we’ve established that I can be a little (or a lot) immature at times. I am aware of that, and I do my best to acknowledge it. I do my best to act like a “real” grown-up, but it doesn’t always work. I was never able to acquire certain social skills–skills that sometimes seem almost innate to neurotypical people–and on many occasions, I mask. That is, I try to mimic the behavior of a neurotypical person. I try to disguise the fact that I am autistic. Every so often, I am successful, and people are stunned to learn that yes, I really am autistic. I never would have guessed, they say. Or even, You don’t even look autistic, as if we all have I’M AUTISTIC tattooed on our freaking foreheads.
Anyway, masking is hard. It’s fucking exhausting. So why bother at all?
Probably because I am a human being, and like any human being, I want to be accepted. I want to be accorded the same respect and dignity that any neurotypical, gainfully employed, homeowning thirtysomething would receive. I am disabled, sure. I’m autistic. But no matter how “childish” you might think I am, no matter how “immature” you might view my behavior and reactions, I am not a child, so do NOT treat me like one.
It’s degrading, and it’s insulting.
I don’t like being infantilized any more than you do. I don’t like being talked down to or talked over. I don’t like when my feelings and opinions are not taken into account, but when people perceive me as a child, I can see where it would be easy for them to treat me like one–and for the record, even children are deserving of basic respect, folks. Even children deserve to know that their feelings really are valid, regardless of whether you understand why they feel how they are feeling!
Its hard, though, because I do live with my parents–while I haven’t been an actual child for quite some time now, I am their child, and that is never going to change. It’s easy for them to see me as immature, and sometimes, in some ways, they aren’t wrong. I get it–I do–but at the end of the day, I am an adult.
My arrangement with my parents is one of interdependence. I don’t work, and I live in their house, but I do 99 percent of the housework, and I do all of the physically demanding farm-related stuff–anything that involves heavy lifting–so it isn’t like I contribute nothing to the household. I couldn’t hack it without them and I know it, but at this point, they couldn’t hack it without me, either, so like I said, it’s an interdependent relationship. We rely on each other.
I’m picking on my parents here, so I feel the need to emphasize that they are, generally speaking, wonderful, supportive people. They are far from the only ones who occasionally treat me like an inferior or a subordinate, but for these purposes, I am using them as an example. I do the best I can. I do whatever chores they ask of me, and they usually don’t even have to ask. But still–I just live here. I don’t pay the bills, so I don’t get a say in much, and at times, it does feel like my wants and needs don’t matter. My opinions may be taken into account, sure, but they don’t carry all that much weight, and I am definitely not treated as an equal around here.
Why is that?
I can’t help but feel that things might be different if I were physically disabled, or able to go out into the world and earn some money. The nature of my disability shouldn’t matter–disabled is disabled, right? So I let my admittedly volatile emotions run away with me sometimes. So neurotypical people (like my parents) don’–or can’t–understand why this happens, or why I can be so damn immature. I know I have to cut them some slack, because like I said, even I don’t always understand it, but I am guilty of losing my patience with that.
My life looks very different from that of the average neurotypical person of the same age. I know this better than anyone. Neurotypical people are “normal,” so they are able to act “normal,” but I am not like them–my autistic brain processes literally everything differently, from sensory input to deeply felt emotions that might seem “irrational” to other people, including my parents. I do not expect them, or anyone else, to understand this, but I absolutely demand to be treated with respect.
Like an adult.
I do need some things in my world to be modified, and I do need certain accommodations. For instance, I want others to be aware that loud noise and commotion make me lose my shit every single time (sensory overload issues), not because I am immature, but because I have a disability. I categorically refuse to be treated as “less than” because I happen to be autistic. I’m done. I won’t tolerate it anymore, not from anyone, and that includes my own parents. This attitude causes friction every now and again, but I make no apologies, nor should I be expected to apologize.
I want–no, I demand–to be treated with the same respect with which you would treat anyone else. I demand that you do not talk down to me. I am neurodivergent, but I am not a baby. While I am disabled, while there are undeniably things that I just can’t do, I’m still a goddamned adult, every bit as much as you are, so do us a all favor and quit walking around like you’re my superior, because you’re not.
It’s condescending, and I am so over it.
As someone with an academic background in women’s/gender studies, I’m deeply embarrassed to admit this, but… there was a time not so long ago, that if such a thing were possible, I would gladly have traded my ability to write for, well… for physical beauty. I now know that I really wanted was to feel confident. I wanted people to like me. I wanted to be loveable.
I come from a family of petite women, but I never possessed that same waif-y build as most of the female relatives I most admired, and I fell into the trap of comparing myself to these women who were, to my mind, beautiful.
The summer before I started college, I had a major nervous breakdown, and for a good month and a half, I couldn’t eat much of anything. I basically subsisted on water and dry Special K, so it goes to follow that I lost a lot of weight. I had to adjust red faux-snakeskin belt to the tightest notch because my pants were literally falling down, and even my grandmother, who once admitted that I was the “heaviest” of her four granddaughters, thought I was way too thin.
My family, including my beloved but fat-phobic grandmother, became very concerned about me, and as there was no other recourse, I started therapy and psych meds, after which I was able to eat again. It was then that I began to develop a flaming case of body dysmorphic disorder—in no way did I want to regain the pounds I had lost when I was all but starving—so I severely restricted my food intake and started exercising compulsively.
If I ate even one Oreo over the serving size, I would do a cardio yoga routine over and over again, well into the night. My weight plummeted to its all-time low, and for a 5’4” young woman with fairly average bone structure, I was, medically speaking, underweight, even though I was never emaciated or anything like that. I didn’t have a full-blown eating disorder, but my eating habits were very definitely… disordered.
Years later, my dad told me that I was “painfully thin” during that period of my life, and he was not wrong.
When I was twenty years old, we went to our favorite beach down on the Cape, and I felt confident. I felt good in my swimsuit. Until I saw the photographs, that is. I was posing alongside to my teenaged sister , and she and I were the same size. For the record, my sister is 4’11” and small-boned, so there was no way I should have been the same size as she was. There’s still no way. But my perception was so distorted, I actually believed I was “too fat.” There is nothing wrong with being fat, and I never judged anyone else for the size of their body or for any physical “flaws,” but I was never able to extend that same kind of grace and compassion to myself.
By my second year of college, I was a proud, self-identified feminist, and body image became my pet “cause.” I fully understood—on an intellectual level, at least—that we unconsciously absorb the media images with which we are bombarded each and every day, that the standards set for us are not realistic, and that very few of us fit the socially accepted definition of “beautiful.” It’s like intellectual giftedness; it happens, but it’s rare. I’m not stupid, and I knew all that stuff. I knew there was an effed up disconnect there, but I was hopelessly incapable of applying theory to my own circumstances.
Interestingly, I never compared myself to celebrities. Instead, I compared myself to my petite family members, and I just did not measure up. No one meant any harm, but there was always a lot of “fat talk” in my family, and as if by osmosis, I took in every single word. I just knew that everybody was judging me for not looking like the thinner, prettier women whose blood I share.
Post-college, I quit dieting and exercising altogether, and to my profound shame, I gained a significant amount of weight. If I felt like crap about my body before, I hated it that point. I loathed myself because it was “my own fault” that I had morphed into what I saw as a flabby, blubbery shadow of my former self, and I dreaded family functions more than I ever had before because I could just feel the judgment. I could almost hear my relatives thinking, Man, she really let herself go, and I just wanted to crawl under a rock and stay there for the rest of my life. In hindsight, I don’t think anybody really cared that I wasn’t “painfully thin” anymore, that I was a few pounds overweight, but I was sure they all thought I was gross and ugly.
I had a wake-up call when it was confirmed that I did indeed have “too much weight for my height,” so I started dieting and exercising again. Not to the same degree as in my early twenties, but it was still nowhere near healthy. I quit carbs (which are nutritionally essential, by the way), and I began measuring out every morsel I put in my mouth. Today, I firmly believe that my obsession with food and its restriction was the catalyst for an escalating problem with bingeing—I found I could no longer satisfy myself with a few cookies or a bowl of ice cream, and even though I didn’t “indulge” often, when I did, I would eat an entire package of cookies or an entire carton of ice cream in one sitting. It goes without saying that I would be completely disgusted with myself after each binge. I would convince myself that I would “start over” on Monday, but… I never did. God knows I tried, but it wasn’t working, and I constantly beat myself up for having no willpower.
Several years later, for reasons I still don’t understand, something finally clicked, and I gave up trying to attain the “perfect” body—a body that nature never intended to be mine. So what if I am “bigger” than my family members? I am so much more than my body, and the number on the scale is the least interesting thing about me. I don’t even get on that scale anymore because I find it very triggering, and I just don’t want to go there, as I don’t want to relapse into body dysmorphic hell.
I stopped hating myself for my perceived “flaws.” I stopped focusing on my weight and my looks. I decided that I just don’t care anymore. I wish I had some sage advice for those who still struggle with body image, but… I don’t. Somehow, I just figured it out. It took the first thirty-five years of my life for me to reach this point, and while it pains me when I think about all the time I wasted picking myself apart and worrying about what other people might think about my appearance, I have to look at it as a better late than never kind of deal.
I am so much happier since I stopped dwelling on that stuff. I exercise in order to feel physically strong, and I (mostly) eat a balanced diet because I want to be healthy, but my body is not “perfect,” and I am never going to be any kind of supermodel. Sure, there are times when I catch myself sliding into my old way of thinking, but I am able to catch myself and rationalize—something I was never able to do before—and I will never, ever take that for granted.
Never again will I be willing to trade my brains for beauty. Even for those few individuals who are born “beautiful,” ageing happens. No one stays “beautiful” forever. If you’re lucky, you’re going to get older, and once your “beauty” has faded away with your youth, well, what do you have left? You might have to find a whole new identity and reevaluate your entire concept of who you are, and that, I have to guess, would not be easy. Our faces and bodies grow, shrink, and change as our lives change. It’s supposed to be that way, and there is nothing wrong with it. We cannot allow our physical bodies to define who we are.
It’s true that I am neither “beautiful” nor “petite.” I will never be either of those things, and that is okay. Every body is unique, including me.
Who you are, and what you do with yourself between the cradle and the grave, matter infinitely more than what you look like—take it from someone for whom this revelation happened far too late. I am neither over- nor underweight. I no longer look like a twentysomething. In addition to a bit of (normal) body fat, I now have gray hair and crow’s feet, but I have better things to do than worry about that. Our faces and bodies, are going to change as we become older, and there is no getting around that reality. The good thing is that age is often accompanied by wisdom. Regardless of what we look like or how much we weigh, we are good enough. Our appearance is not what makes us loveable.
We’re all going to die someday, and maybe we’ll even grow old and senile before that happens, but as a poet by the name of Sappho said, “Though they are only breath, these words which I command are immortal.” I was not put on this earth to fight in vain against ageing or to maintain my figure. Neither were you. I was, as one of my high school history teachers said, “born to write.” That is my purpose.
I haven’t updated this blog in SOOO long, but at least I have a good excuse: I wrote an 87,000-word/330 page novel, and I’m now trying to find an agent. Not gonna lie, I’m nervous about the avalanche of rejection notices that are headed my way–it’s an inevitable part of the publishing process for pretty much everybody–but we all know I’m not the most confident person on the planet, so it’s very, very intimidating to say the least.
Anyway… last time I posted, I was rambling about depression and whining about wanting to go back to school. Well, almost ten months, is a long time, and things have changed. I’m the happiest I’ve ever been, and I no longer yearn to obtain that damned doctoral degree. You see, I wanted my Ph.D. for all the wrong reasons. I was convinced it was the only thing that could give my life a little meaning, that if I didn’t finish my education, I wouldn’t have anything going for me, and that I was basically a worthless failure without the “Dr.” title.
I was wrong. I was not put on this planet just to another diploma to slap up on my wall. I’m a writer, and I’m here to tell a story. That’s it–that is my life’s work–and I know that now. I don’t need to justify my right to take up space, not to anyone.
Last February, my sister Lindsay got engaged. Not only was she preparing to marry a man I positively loathed, but that big ol’ diamond ring on the third finger of her left hand served as a painful and glaring reminder of the things I will never have–and for a long time (try most of my life) I felt robbed of what should have been. It’s true, there was a time when I would daydream about my wedding, but tellingly, I was never able to imagine a groom for myself. I couldn’t picture a home of my own, children, marriage itself.
But then I realized: I don’t want those things. It isn’t who I am. I mean, sure, I fantasize sometimes and wonder what my life would be like if I didn’t have Asperger’s, but the fantasizing never fails to come to a grinding halt when I remember that I have no idea who I’d be if I were a neurotypical person. Okay, maybe I’d be one of those (few) people who really are happily married, but odds are I’d be as miserable as the (I assume) majority of married folks. So divorce rates have dropped in recent years… might have something to do with the fact that marriage rates are also declining. I have no idea, but it makes sense, doesn’t it?
But anyway, who would I be? There is a high likelihood that, were quitting the spectrum an option for me–if I chose to go that way–I’d be forfeiting my ability as a writer, and that is something I’d never be willing to do. Writing is not only what I do, it’s a huge part of my identity, and never in a million years would I trade that for “normality.” This is who and what I am. If I were to suddenly turn neurotypical… I would probably be losing everything that make me, well, me. Thanks, but no thanks.
Back to my sister’s engagement. Before I had my little epiphany, I was jealous–not of her man, mind you, but of her happiness, and I shed a small ocean’s worth of tears over it. Lindsay is going to wear our mother’s wedding gown, and I couldn’t help but think that it should have been me. It hurt, watching Mom hand that beautiful dress over; it felt like an admission of sorts. It felt like she was acknowledging that all hope for me was gone–that I was a lost cause–and that definitely stung. Like, duh… Amanda is never going to need a wedding dress! She did offer to hold onto it, just in case I ever get married, but I failed to see the point in that. I’m never getting married. On some level, I’ve known that since middle school, but it is only recently that I’ve really been able to accept–nay, embrace–it.
A year ago, I refused to be Lindsay’s maid of honor. I wanted to crawl under a rock for good, and I sure as shit didn’t want to go to that wedding–I didn’t want anyone’s pity, and I sure as shit didn’t want to be seen by anyone, particularly her future husband’s family, as the pathetic, unemployed autistic older sister who will never move out of the parents’ house. It was a mortifying thought. But now, I’m like, so what if that’s how anyone wants to see me? I’m not pathetic. I’m no one’s definition of “normal,” but again, so what? I have a rich intellectual life, I live in a quiet, secluded, beautiful place, and most importantly, I’m surrounded by people who love and accept me exactly as I am.
I didn’t want to pose for pictures at the wedding, either, mostly because I’ve battled body dysmorphic disorder since my late teens, but that has (mostly) changed, too. I am going to be Lindsay’s maid of honor, and I will pose for whatever pictures she wants, and I really don’t give a flying fuck if anyone thinks I look fat–my body is no one’s business but my own, and anyone who wants to judge me can go ahead and kiss the fattest part of my ass.
After a lifetime of being “partners in crime,” Lindsay and I drifted apart when she met her now-fiancé and moved out (we have since become “partners in crime” once again, even though we no longer live in the same house). I was happy that she was happy, but I couldn’t take it any further than that because I was anything but thrilled–I missed her terribly, and I couldn’t forgive her for “abandoning” me. If she had left me for a decent person, I thought, I would feel differently, but her choice of partner… as far as I was concerned, it left much to be desired. For two years, I struggled even to tolerate my soon-to-be brother-in-law. Not only had Lindsay chosen him over me, but he was the walking embodiment of everything that is wrong with America–with humanity–and I didn’t know how to get past it. To say I was a raging bitch to the guy is a colossal understatement. Slowly but surely, though, I’ve come to accept him; at the end of the day, he loves my sister, and he makes her happy. I can’t ask for more than that.
Yes, I’ve made my peace with… all of it. Don’t ask me how, because I don’t know, but for the first time ever, I am at peace, and it’s the best damn feeling in the world.
Everyone gets the blues sometimes. Everyone feels like life has screwed them over sometimes. Right now, it’s especially easy to feel this way, given climate change doom, the global pandemic, systemic racism, and everyday life in the dystopian nightmare that is present-day America. Most of us are probably at least a little down in the dumps; after all, there doesn’t appear to be much sense in being optimistic these days.
I have lived with depression for as long as I can remember. It’s nothing new to me, but now… my personal life is going to hell in a handbasket right along with the rest of the world, and I feel like shit, more so than I have in a long, long time. It’s been nearly a decade since I finally found a combination of psychotropic drugs that works for me, and since then, my depressive episodes have been few and far between. True, I have struggled with the ups and downs of family life, probably more than the average person does, but I guess that’s par for the course and part of being a highly sensitive autistic person, and for the most part it has been, well, manageable.
Three years ago, my sister–my lifelong pal, my ‘ride or die,’ my ‘partner in crime’–met her now-fiancé and moved out, which really knocked me for a loop, and it took a good year before I was able to forgive her for ‘abandoning’ me. It sends my anxiety levels through the roof just thinking about it.
She’s getting married in a year, and naturally, the upcoming wedding is all that anyone can talk about. It makes me want to rip my hair out, and I am a highly proficient hair ripper. I wish that’s all it was, but oh, no: I’m afraid it’s a hell of a lot more complicated than that. All this wedding talk, all this wedding planning, is a knife to my heart.
I used to long for love, you see. I’m only human. I used to dream of what it would be like to have someone love me, someone who was under no familial obligation to do so, even though I have known since I was a teenager that it’s simply not in the cards for me. It’s hard to give up hope, especially when hope is all you have, but sooner or later, it doesn’t make sense to hold onto a stupid pipe dream about something that can never be.
By my mid-twenties, I was forced to accept that my life would not include the husband, the 2.5 kids, the dog, or the house with the white picket fence. It was painful, yes, but it some ways, it was easier to just let go. I decided that, since I couldn’t do what other people do, I would pursue my education. I would make my own version of happiness.
It sounds arrogant, but I’m smart enough to know that I am intellectually gifted. I love school. I love learning, and I thrive in the world of academia. After a lot of uncertainty, after a lot of blood, sweat, and tears, I completed my MFA in 2016. Like most onetime students, I was drowning in an outrageous ocean of debt, but because I am considered ‘totally and permanently disabled,’ my loans were forgiven. Thank God they were, because I get less than $600 worth of disability money every month, and I would never have been able to repay them.
That loan forgiveness is a double-edged sword, though. It means I can never take out another loan, or I will have to repay all my loans in full.
I want to finish my education. I want to earn my Ph.D. It would be the biggest, shiniest jewel in my academic crown, and it would be a real achievement for anyone, but for me… it would prove that that my life is not a colossal waste, and it would be compensation, of a sort.
Until the pandemic, there were no low/no-residency doctoral programs in the field of English, literature, or creative writing, and because I am basically a shut-in, submitting an application anywhere would have been pointless. I obtained my undergraduate degree from a local college, in a traditional classroom setting, and every therapist I have ever had says that that is borderline miraculous.
This same school does not offer an MFA, never mind a Ph.D., or I would have gone back there in a heartbeat; despite the fact that I was suffering from crippling depression at the time, my college years were somehow the best years of my life. Not because I had any kind of a social life or anything–I didn’t–but I loved being in the classroom. I loved listening to my professors’ literary lectures, and just like a sponge, I soaked it all up. And for those few short years, I could pretend that I was just another college student, that I was like everybody else. I could pretend that there was hope.
This past week, I had an interesting conversation with the director of the creative writing department at Texas Tech University, and it turns out that I could attend classes online. I could earn my doctorate from a distance! But there is one major catch: online students do not receive funding because they are not physically present to do teaching fellowships. And without funding, I can’t afford to go (student loans, remember, are no longer an option for me). So essentially, I had a bright orange carrot dangled right in front of my nose, only to be snatched away at the exact moment I was about to grab it.
I’m not even going to apply–with my luck, I’d be accepted and have no choice but to decline–and I just couldn’t bear that. No, unless a real miracle happens, nobody is ever going to call me Doctor.
We all know that life is hideously unfair. I for one have been bemoaning the injustice of it all for more than half my life, but now… ? I have to paste a big fake smile on my face and watch as my sister walks down the aisle wearing my mother’s wedding gown and somehow conceal the truth. I can’t let on that I am dying inside because I can’t be the one to ruin her big day. I don’t want to attend this wedding, not at all–it is going to cause me untold pain–but I can’t very well miss it, either.
Alas, I have to swallow my grief for my own shattered dreams–the youthful dreams of love and the replacement dreams of academic glory–and I have to meet the future in-laws, who all know that the sister of the bride is an unemployed thirtysomething autistic freak who will always live with her parents. Ugh. How much can one sad little person take?
My circumstances–circumstances far beyond my control–have robbed me of everything I have ever wanted. Forgive me for being so depressing, but… I’m depressed. Be honest, can you blame me? I really, really need for the universe to cut me a damn break for once.
Back in high school, a classmate told me I should be a Pantene model, and at the time, I probably could have been–I had long, silky, perfectly straight brunette locks, and they were, as Louisa May Alcott put it, my “one beauty,” but then…
I’ve struggled with trichotillomania, or compulsive hair pulling, since I was about twenty years old, but it only recently came to light that in my case, pulling was/is actually a form of “stimming” (you can read all about that revelation here), which for those who aren’t in the know, refers to those “quirky” repetitive behaviors often observed in autistic/neurodivergent folks.
But even in my pre-trich days, I was a freak about my hair. I insisted on having my mom put it up in a bun or whatever every morning before school because it had to be perfect–no bumps in my slick ponytail–and no matter what I did, I was never able to achieve that level of perfection. Ridiculous, I know–what teenager still has Mommy style their hair, right?
Once I started pulling, though, I got even freakier about my hair. I never stripped myself bald like some people do, and my patchy spots were probably not noticeable to anyone except me, but I was deeply self-conscious about it. Who wouldn’t be? After all, pulling your own hair out is not exactly normal, and I was desperate to “pass” as normal (another unattainable goal of mine). So, I wore a bandana all the time. Then I got a buzz cut and told everyone I was making a statement.
I can’t deny that shaving my head was empowering, in a sense. People would stare at me, which forced me to stare back, like What are you looking at?, and that’s a big deal for me–like many people on the spectrum, I struggle with making eye contact.
My hair grows really fast, though, and I’d have to buzz it twice a week, and after a year and a half of rocking a bald head, I got sick of the maintenance involved, so I decided to grow my hair out–trich be damned. You don’t have to be a shrink or a genius to guess that once it grew into a shaggy mess, once it grew long enough to pull, well, I started pulling again, and back to the trusty bandana it was.
After one especially bad pull fest that left me with a painful, swollen bald spot on the back of my head, I contacted my prescriber. For years, she’d wanted me to try Prozac for my trich, but I resisted–the combination of Abilify, Lexapro, and Wellbutrin worked well for my depression, and I was terrified to mess with success as far as that goes. Now, though, I was at my wit’s end and willing to try anything to stop, or at least decrease, my overwhelming urges to pull my hair.
Quitting Lexapro and switching to Prozac was a tough adjustment that involved mind-numbing insomnia, but long story short, everything worked out: my need to pull was significantly improved, and now I only pull when I’m coping with an excessive amount of stress in my daily life (hello, COVID-19…).
My hair is long again, but all those years of constant pulling left their mark: I have more white/gray strands than the average thirty-something, especially my onetime favorite pull spots, and my hair has grown back with a coarser texture in those same places. I never wear my hair down or loose because I hate how it looks, and even though I always swore I’d age naturally, for a two and a half year stretch of time, I was a Garnier Nutrisse color junkie.
But I wasn’t dyeing my hair for my own benefit; I couldn’t care less that it’s turning white. I just dreaded having to hear any unwelcome comments from other people, particularly “well-meaning” family members.
So, I kept a bottle of Truffle #50 on hand at all times and continued to dye my hair every four weeks, and it must be said that that was a complete and total pain in the ass. I was sick of dealing with it, but at the same time, I felt pressured into it. I felt like I had no choice.I had this idea in my head that you can only have white hair at my age if you are pretty, and I just wasn’t pretty enough to let it go.
Had it been a simple matter of natural aging, I might have felt differently, but this? This was my own fault. I was the one who ruined my once-beautiful hair, and now I had to live with the unfortunate results.
Finally–finally–I hit a point where I was able to ditch the dye. It dawned on me that I don’t need to color my hair in order to impress anyone: it’s my hair and my business, and anyone who makes unsolicited remarks about it is probably an a-hole.
It’s been six months since my last dye job–my very last dye job–and I’m so glad I called it quits. My hair is significantly softer now that I’m not bathing it in chemicals once a month, and while the white strands are definitely noticeable… so what? I’m trying to look at them like battle scars or badges of courage or whatever, and while I still have my moments of insecurity, for the most part, well, it’s just hair.
Obviously, I haven’t been blogging, and to anyone who actually reads this page, I apologize for my long silence. I’m writing a novel, which takes up an enormous amount of time and energy, and I haven’t had much left over for neurodivergentgrrrl, but I’m going to try to post on here at least once a month from now on–beginning today.
Thank you for reading my ramblings!
Ah, the holiday season. A joyous time for friends, family, feasting, celebration, unbridled materialism, etc. Some of us love the festive feel–Deck the Halls, stockings hung by the chimney with care and all that warm, fuzzy crap. Our nearest and dearest with their smiling faces gathered around a table heaping with enough food to feed a starving country for a year, finding the perfect gift for that special someone, kissing under the mistletoe, all of it. It evokes happy childhood memories of decorating a six feet tall evergreen with our beloved heirloom baubles, of tearing through carefully wrapped packages on Christmas morning (emphasis specifically on Christmas because that is the holiday my family celebrates).
And of course, of family functions.
Personally, I love my mom’s prepared-from-scratch Thanksgiving dinner. I love decorating the tree. I love Christmas shopping for the people I care about, and I love opening gifts with my immediate family every Christmas morning. I cherish our time-honored traditions. I’m not some holiday-hating Grinch, I’m really not. But I hate the family gatherings that inevitably take place at this time of year, and it isn’t because I hate my family.
It’s because their extraordinary loudness gives me sensory overload
My entire childhood, I dreaded getting together with family. I could never quite put my finger on the reason–again, I genuinely like most of my relatives–and my dread intensified with each passing year. Again, I had no idea why. All I knew was that I really, really hated the holidays. I was well aware that the whole production was supposed to be fun, and naturally, I wondered what was wrong with me–why couldn’t I have fun like everybody else?
Christmas Day was always spent at the cozy home of my beloved maternal grandparents. Grams and Gramps loved the holidays, and I loved Grams and Gramps. They couldn’t understand why, literally every other day of the year, I loved to spend time at their house with them. Hell, I couldn’t understand.
I chalked it up to social anxiety, that I feared the inevitable comparisons to my cousins, and that I came out on the losing end of those comparisons every single time.
I chalked it up to depression. It made sense–who in my situation wouldn’t be depressed by having to see all their normal aunts, uncles, and cousins out there living their normal lives? Who wouldn’t be depressed about being the ugly duckling who had no prospect of someday becoming a swan?
Anyway, I know it made my grandparents sad that Christmas made me so damn dismal. They loved their family even more than they loved the holidays, and that one special day of the year when everyone sat around their dining room table to eat Grams’s lovingly prepared Christmas dinner… well, it made them happier than anything. Gramps would sit at the head of the table and beam with pride as he watched his children and grandchildren dig in, laughing at the same old stories and getting sentimental about years gone by, but me? I sat there in obvious misery.
Grams and Gramps loved me to pieces, so I know it must have hurt them to see me sitting there looking so damn dejected on their special favorite day of the year. I’m sure I ruined at least a few Christmases for them, and I deeply, deeply regret that.
But I didn’t know. No one did.
It was the noise. The loud, raucous laughter, the din of everyone talking over each other, and the chaos of a big, happy family celebrating all together.
When I was finally diagnosed with Asperger’s syndrome, I was at long last able to put two and two together. I learned about sensory overload and how people on the autism spectrum have heightened sensitivity to outward stimuli, including loud noises. In my case, loud noises are excruciating. They make me feel like my brain is quite literally rattling around inside my skull. They make me physically uncomfortable, to the point of unbearable tension and a frantic desire to flee the scene. I crave stillness, peace, and quiet. I need it.
After thirty some-odd holiday seasons, I now know that I need to take a break from the noise and confusion whenever it all gets to be too much. I go someplace quiet and just relax for a while, away from the racket, and I do this as often as necessary. I don’t care if it looks weird. It preserves my sanity, and I make no apologies for that.
My only wish is that I had known all this a long time ago. I wish I could have enjoyed Christmas with my grandparents when they were here. I wish I could explain to them what my problem was, that it had nothing to do with them or the family in general–that it was because of the way my brain was wired. That I wasn’t being miserable and putting a damper on everything on purpose.
I still don’t look forward to these annual family celebrations. It still gets to me, and I still feel like the one person who isn’t having a good time–for me, every holiday gathering is an ordeal, and I just have to grin, bear it, and get through it to the best of my ability. I still breathe a sigh of relief when it’s over for another year, but now that I understand my discomfort has a valid neurological reason, I no longer feel guilty for it.
Hello. My name is Amanda, and I am chronically insecure. I once said, in reference to a certain member of my family, “I really need to grow a set and stand up for myself,” and guess what? I never did.
Word to the wise: do not be like me. Your thoughts and your feelings matter (I am not talking about politics here—I have very deeply held convictions regarding that shit. No, I’m talking about life in general.). You have a right to them, just as much as the other person does. They do not, however, have any right to belittle you and get away with it, so don’t stay quiet and let someone else say hurtful things to you.
The other person here—so we’re clear, they are not the same person mentioned above—has their own set of issues. They do not deal well with their own emotions and struggle with displays of emotions in others. I am a very emotional (some would say volatile) individual, so it’s a powder keg kind of situation, and from time to time, explosions happen. It’s inevitable, unfortunately. I love this person dearly, but I am intimidated by them. They possess a quick wit and a viper tongue, and when they get angry, they have a tendency to say things that really sting, so I generally go out of my way not to piss them off because I can’t handle it when someone is mad at me, nor I can’t handle biting remarks aimed in my direction. Worse still , I can’t do anything about it.
My shrink tells me that the ability to be assertive is not innate. It takes practice. Well, part of my problem is that I cry when I get upset. It’s involuntary. Reflexive. I hate it, but I can’t stop it from happening, and it makes me feel like an overgrown baby in situations where I really would prefer to feel like a fearless Amazon warrior. The other part of my problem is that I most decidedly possess neither a quick wit nor a viper tongue. At the critical moment, I stammer and stumble and forget everything I need to say, and it really does suck. I don’t want to look like a bumbling moron. I am not a moron in any way, shape, or form, but you wouldn’t know it if you overheard me trying to defend myself or argue a point of any kind. I am emotional, and I am overly sensitive. It’s not a good thing when you want to stand your ground, and it gives the other person a very definite advantage.
Take last night. The other person and I had a disagreement about, of all things, a baseball player. I dislike said player, but the other person does not, and when the player played poorly in a must-win situation, I voiced my displeasure. I said,” I’m sorry, but I just don’t like him.” Granted, I was, as usual, overly emotional at the time, but even so, I had the right to my opinion on the subject, didn’t I? The other person responded with “I don’t care if you like him or not—you don’t like anyone when they aren’t playing well.” (which, just for the record is completely untrue).
I thought the last remark was unnecessary and not very nice, but do you think I was able to tell the other person so? Do you think I was able to defend my position? Hell, no. Of course not. As soon as this person vacated the area, I started to cry. I am nothing if not predictable under these circumstances.
This is hardly the first time something like this has happened. I let others walk all over me all the time, and I have a long history of it. I don’t know why I have this problem, but I do, and I am evidently unable to solve it to my own satisfaction. In hindsight, I know exactly what I would have liked to say last night. I wouldn’t have aggressive been confrontational (the root of the issue is that I hate confrontation, and I avoid it at all costs. Even when that cost is my right to speak up when I feel that I have been wronged). I would have been all diplomatic about it. I would have practiced the effective communication and conflict resolution skills that I have discussed so often in therapy, but instead, I clammed up. Someone talked down to me. Someone made it clear that they do not see my opinion, even on something as trivial as a baseball game, as valid, and that is not okay. But I let it happen—again.
In a way, it’s my own fault that I get bullied by some of the people in my life. I just sit back and allow them to treat me like crap when I should be politely telling them to fuck off (obviously not in those words) because I have a right to my thoughts, feelings, and opinions. Are my displays of emotion over the top at times? There is no question about it. But that does not give anyone license to invalidate what I am thinking or feeling. It’s just that simple, and yet… it’s so much more complicated.
I said that in a way, it’s my own fault that certain people continually treat me like crap, but really, IT IS NOT MY FAULT! Should I stand up for myself? Duh. But these same people know damn well that I struggle with confrontation. They are not so dense as to be unaware of my emotional vulnerability. Yet, they continue to do what they do, and that is on them. They have a kind of power over me, albeit one that I allow them to have, and they do not hesitate to use this power. The way I see it, it’s not all that different from schoolyard bullying. It is someone strong choosing to pick on someone with a clear weakness.
They say that bullying stems from insecurity, and maybe that’s the truth. Maybe these individuals are just as insecure as I am, in different ways, and if that’s the case, I am sorry for it, but a bully at their core is still a bully. The reasoning behind it does not matter. They still have no right to knowingly make someone else feel like shit. I’ll say it again: it is not okay.
I hope someday I will find the courage to tell them that it is not okay.