Snow White pushed a stack of ceramic espresso dishes off of the kitchen counter this morning, to see how many of them would smash into a thousand tiny pieces. The answer was most of them.
I couldn’t find my broom, so I had to clean the scattered ceramic chips by stooping over a dustpan. Which made me wheeze and gasp for breath.
So the whole thing turned out great, because I’ll be able to tell my doctor, when I see him on Tuesday for my first annual physical in two years, that my COVID long-haul symptoms have not improved one bit. Which I might otherwise have lied to myself about.
Got vaccinated against COVID-19 today. Stood in line for just over 90 minutes outside a Lower East Side high school that was being used as an immunization pod. There was an old couple in front of me in line; the man initially thought I was standing too closely behind him and demanded I move back. Fair enough. I spent the remaining 90 minutes keeping my distance from the couple.
After a while I began to worry about the old man. His wife, no youngster herself, said he had just had heart surgery. She wasn’t getting immunized—perhaps she didn’t yet qualify. Mainly she was there to hold his hand and keep him from falling down.
Over the 90-odd minutes, as unobtrusively as possible, I set myself to guarding the old man in case he needed any help his wife couldn’t provide. At the last corner before the high school entrance, there was a little plastic seat. The old man’s old wife asked him to sit and rest a while, and I told them I’d watch their spot in line.
It had rained, but the sun was beginning to come out, and the temperature was warm for January. I did little stretches in place, moved forward occasionally (when the line moved), and let my mind wander.
I had my phone on me but I didn’t look at it for fear of draining the battery—there was an access code on the phone that I needed to present to a gatekeeper to get my shot, and I couldn’t do that if the phone died. Also I kind of dug the boredom. At home, I can look at screens for hours. But outdoors, standing in line, anxious about losing my place or not realizing the line had moved or losing my ID (I have an anxiety disorder and worry about many small, stupid things), I prefered to just be bored for 90 minutes. It was rather restful.
There were many workers helping move the line along, mostly young folks in their late teens and early 20s. Their work day had started at 7:00 AM and would continue until 8:00 PM. Thirteen hours of standing in place. Thirteen hours of answering the same questions. I made a point of learning their names and chatting with any of them who were willing to talk. Catastrophe may bring out the worst in some people, but it was bringing out the best in them.
One of the helpers, an MTA worker, told me he looked forward to standing 13 hours a day after weeks of sitting around at his regular job with nothing to do.
Eventually I made it into the building itself, and then I was getting a jab. Didn’t hurt. Uneventful. I thanked the doctor for his gentleness.
Afterwards I sat in a makeshift waiting room for 15 minutes to be sure I didn’t have an adverse reaction. Then I left, thanking cops, guards, doctors and volunteers as I did so.
Walked around the Lower East Side a few minutes longer and then caught a Lyft home.
Later today I may have soreness or nausea or a headache that could last a couple of days. No big deal. I have to wait 28 days before getting my follow-up dose, and it has to be the same vaccine I got today—the Moderna vaccine, not the Pfizer. (The Pfizer has a waiting period of 21 days.)
When I got home, my daughter was awake and cuddling our big white cat. I went online to register for my second dose. There are no available locations in Manhattan in that time period, so I chose one in Brooklyn, and I’ll go there in February.
The first dose makes you 50% immune, they had told me. The second dose makes you 75% immune. Nothing makes you 100% immune. We will need to keep masking and maintaining social distancing for a long time to come.
“Ava, you need to understand that there’s something wrong with you, actually, quite a few things.” I listened closely, sitting in the large orange chair, making stick figures with my nails on the fabric. “You have this disease that’s very common with people your age who’ve gone through some of the things you have… it’s called autism, and together we can cure it with time.”
At age six, I knew what autism was, or at least I had a vague idea based on the movies I’d seen, and the bullying I’d observed given to my fellow child-outcasts. I didn’t really understand what the big deal about it was; I mean, my grandpas were both autistic and they were fine… kind of, along with my uncle, and some cousins—I didn’t see where Doctor A. was going with this speech.
“Ava, I have spoken to some of my colleagues, and we are going to give you the diagnosis of ‘unspecified mood disorder.’ No one can know that you’re autistic… there’s still hope for you.”
I panted, she continued:
“A lot of the kids out there in the waiting rooms outside aren’t gonna be able to overcome this, and I believe that you can. With the right treatment we can cure you of your autism… but you can’t tell anyone that you have it—not your mommy, or your daddy, or your friends!”
“Why?” I asked, feeling a ball of shame start to build at the bottom of my stomach.
“Because Ava, if they know, they’ll see you as different, and it will be harder for you to overcome, I promise there is hope for you Ava. There might not be hope for your dyslexia, or A.D.H.D., but I believe that if you stay with me, we will get you through this together.”
Ever since pre-k, I’d known I was different, but for a good couple of years, I didn’t have the shame.
Looking back now, I think it’s pretty obvious that I was not a neurotypical kid: at age four, I refused to leave the house without rubber gloves on my feet because I liked the smoothness on my soles. At age six, I couldn’t talk to kids my own age about anything besides the Wizard of Oz books, explaining my theories about their cultural symbolism, and how L. Frank Baum was an innovator and genius, not just because of his vivid imagination, but because he proclaimed trans rights (for the time), and pretty much invented the blueprint for the home landline—my teachers were not pleased.
What really brings light to my Asperger’s, though, is that my first crush, at age nine, was on Steve Buscemi’s character in Ghost World—I had never related more to a character (except for the protagonist of the same film, played by Jewish goddess, Thora Birch), and I liked seeing someone like me who only talked about his hyperfixations, and found it hard to talk to people. Sure, Terry Zwigoff didn’t mean to portray his character in a romantic light, but even to this day, I find Seymour and Steve Buscemi to be the epitome of male sex appeal.
I first started seeing Doctor A. when my parents separated, after I left a handprint of excrement on the walls of both of my apartments (thankfully, I have no recollection of creating that art). I had a hard time making friends or abiding by social norms, and when there were tiles on the floor, I would count every one of them. When I first moved into my (then) new apartment, I counted each log strip on the ground, and cried when the total wasn’t an even number, or perfectly aligned across the floor.
Doctor A. refused to give me medication for these issues, or for the depression and anxiety that I had at that early age, saying “It would impede [my] progress for these curable diseases.”
I am now sixteen years old, and I know autism isn’t a disease, it’s a neurological condition that people have from birth. I remind myself of that every day, but sometimes, facts can’t curb the shame.
When I started public school I was bullied very badly because I didn’t talk like a normal kid. I would only speak about things that I was interested in, couldn’t make regular eye contact (an issue I still have), and didn’t abide by any of the child-edikit that most kids learn by copying their peers. Kids beat me up in kindergarten because I was so “weird,” and my teachers chalked up my inability to pay attention in class and my unique behavior to my parents’ separation, which is honestly one of the least traumatic traumas of my childhood.
My parents eventually transferred me to another public school because I wasn’t accepted into my neighborhood school’s I.C.T. program, and my bullying was pretty unbearable.
When I transferred, for the first time in my life I was popular, but as my peers got to know me better, I quickly became isolated again. I eventually repeated the second grade because I hadn’t been able to learn anything in my previous school due to well… all that dogshit, of course; and being left back didn’t help me adjust socially at all. On top of the Asperger’s and being the new kid, I was now not simply the weird girl, I was also the dumb girl. Kids bullied me, calling me a ret*rd, and telling me to kill myself. This period of having no friends (apart from fourth grade when I actually had kind and qualified teachers) lasted all of elementary school and into seventh grade.
In fifth grade I forgot how to smile… when I looked at photos of myself, I freaked out because I was scared that I wasn’t smiling properly. Every day I would spend thirty minutes in front of a mirror practicing smiling, moving my mouth with my fingers, using my school protractor to measure the angles of my smile. I felt like a freak, and sometimes, when I look at photos of myself, or actors with great smiles, I forget how to smile once more. Every couple weeks I go to my bathroom mirror and practice smiling. Sometimes it’s for five minutes, sometimes two hours.
Socialization comes easily to other people. I don’t know how to make proper eye contact still: people always tell me I either never make eye contact, or stare at people so aggressively, it creeps them out. I also overshare to everyone about my political opinions and my sex life, because I still don’t understand social norms in America.
The other day I had an argument with my parents about not needing to wear pants when I go outside, underneath my hoody: “They won’t know what I’m wearing under this giant thing anyway… Why does it matter?” I still don’t know, and sometimes people think I’m faking not knowing these things to get attention. Truth is, I just don’t understand these unwritten social rules.
I don’t understand why I can’t talk about sex, why I should be ashamed of one of the most natural things in the world. I don’t understand common dress codes, I think they’re sexist, bullshit, and meaningless—and it’s not simply that I’m a feminist, it’s also that my Asperger’s impairs me from understanding these things that everyone else seems to have no trouble with.
Autism isn’t just social and mental, it is also physical, coming in the form of sensory processing disorders. If light is too bright, I can start crying; when people (including myself) chew too loudly, it feels like I’m being stabbed in the ear; and when I freak out or get really scared, my body shuts down, I can’t move, and I especially cannot say anything. I am ashamed because whenever strangers see these behaviors I am criticized. Even people who know and love me criticize me about these things. I feel like no one understands besides other people with these conditions.
That’s the thing, the shame is bullshit, the hatred I have over my Asperger’s is bullshit, wishing I could get rid of my autism is bullshit. The smartest and most talented people in the world are almost always autistic, and always atypical: Einstein, Stephen Hawking, Neil DeGrasse Tyson—but not just scientific geniuses, artists like David Byrne, Bob Dylan, Picasso, Max Ernst, Leonardo Da Vinci, and famous writers like Ernest Hemingway and Emily Dickinson.
You may have noticed that only one of the people on that list is a woman. That isn’t because men are more likely to be autistic, it’s that men are more likely to be diagnosed with autism, as women are taught to suppress their feelings and individuality.
And fuck it, the pros of my Asperger’s far outweigh the social cons, at least at this point in my life. My creativity and vivid imagination, my natural leadership, my ability to work alone and feel confident in my own choices, my unique empathy toward others and compassion for animals, the fact that when I become interested in something I’m practically a walking encyclopedia for that topic—my sense of humor, and the way that I always say what’s on my mind, a trait that women are told not to have, I have because of how my autism affects my executive functioning and my inability to abide by social norms.
I’m trying to stop freezing up when people ask me why I’m so strange, or if there is something wrong with me. I’m trying to not let people’s ableist comments get to my head, because I know deep down that in ten years these people won’t be able to produce an original idea to save their lives.
I have one thing to say at the end of this: fuck off, ableist assholes; fuck off, Doctor A.—I’m not ashamed of who I am; and fuck off, shame—you pit of piss at the bottom of my stomach, you don’t control me! The problem is society’s attitude towards people with neurological differences—not the differences, themselves. After all, in ten years, whatever cool ass shit I’ll be up to, the same kids who bullied me as a child are gonna wish they had my zesty Asperger’s funk.
Dear mom and dad, I know things are harder for me than the average teen, but I’m gonna be okay, because my brain is awesome, and my tits are huge. And to any other atypical person reading this, young or old, from mild A.D.H.D. to Rain Man levels of autistic spice, know that you have a powerful brain and are one of a kind, and these neurotypicals are really just jealous that we have all the hot geniuses and good music.
People have kindly asked how I’m doing, so here’s the answer: I’m doing better. Most days, I’m doing a lot better. My doctor says it sounds like I’m making a good recovery. Making a good recovery, not recovered. Sounds like. I’m what they call a long-hauler.
I came down with a virus in late February, was diagnosed with COVID-19 on 20 March, and stayed bedridden at home until mid-June, when I began returning to work. My company has a remote work force and a non-exploitative attitude toward its employees, so I was able to work from home, in sleepwear, at my own pace.
Initially I could only work a few hours a day. As I kept working into July, I built up a tolerance to fatigue and discomfort, while also slowly shedding the disease’s more intense symptoms.
Generally, I’ve felt more and more like myself—except when I carry a few light packages, walk more than ten paces, or stoop to clean the floor. When I do those things for more than a few seconds, I have to stop and fight for each loud, wheezing breath. The discomfort lasts a minute or two, and then, as I rest, I feel “normal” again.
I’ve been viewing the lung stuff as post-COVID damage, which I hope someday will go away. But I might be wrong to think I’m past the disease. Two weeks ago, the lung stuff aside, I would have said I’d finally recovered from COVID-19, even if my doctor, that very week, would not say so.
But then last Monday, attending a virtual conference, I worked too many hours in a row—and for the rest of last week, I was symptomatic. Tuesday, Wednesday, and Thursday, I sat at my desk working as well as I could through bruising migraine headaches, nausea, and periods of fatigue that were hard to wave aside.
I took Friday off and slept. I slept Saturday. I slept Sunday. My migraine and nausea continued through all three days of rest. I took today off as well and felt better. But now I feel bleh again. Tomorrow, however I feel, I will return to work.
I have friends who’ve also been symptomatic for months, and I’ve swapped stories with dozens more. I also know folks who died from this disease, so I’m grateful to just feel lousy.
LIZZIE VELASQUEZ, age 25, weighs 64 pounds. Born with a rare syndrome that prevents her from gaining weight, she was not expected to survive. Her parents took her home, raised her normally, and, when she turned five, sent her to kindergarten, where she discovered, through bullying, that she was different.
The bullying peaked when an adult male posted a photo of thirteen-year-old Lizzie labeled “World’s Ugliest Woman” on YouTube. The video got four million views. The uniformly unkind comments included sentiments like, “Do the world a favor. Put a gun to your head, and kill yourself.”
Rather than take the advice of anonymous cowards, Lizzie determined not to let their cruelty define her. Instead, as she reveals in this inspiring video captured at TEDxAustinWomen, Lizzie channeled the experience into a beautiful and fulfilling life.
CHICAGO is a dynamite town, but it may not be the best place to recover from a cold. Since I arrived, my virus has gone from a 4 to an 11. There’s a spectacular view out my hotel window, which I’ve spent the day ignoring by sleeping. I have several nice friends in this town who I’m similarly ignoring, having canceled plans with them today because of this fershlugginer cold. I was flat on my back, sleeping, my phone like a cat on my chest, when my dad called this afternoon to recommend gargling with a three percent peroxide solution. My trainer texted a moment later to ixnay the peroxide. She recommended going back to bed to finish sweating it out, and that looks like my plan for the next twelve hours, give or take a hot bath.
I brought a heap of work with me to Chicago, planning to tackle it between visits with Chicagoland friends, but the cold has pushed all chance of work aside. I got one sentence written for an Ask Dr Web column—the easiest task on my plate—and if I’m being completely honest, I didn’t so much write that sentence as copy and paste it from a reader’s email. Come to think of it, it wasn’t even a sentence. It was a question, which the column I was going to write was supposed to answer. So the sum total of my work today consisted of selecting and copying a question and pasting it into a blank piece of digital paper. Also answering the phone, and removing the Do Not Disturb sign from my door just long enough to admit Room Service.
I get colds a lot. My daughter brings them home from school to visit, and when they see my lungs they move in for the winter. And who can blame them? I’ve got great lungs. All the years I smoked cigarettes, I never caught colds, go figure. There’s a message in that, or maybe not. Maybe I just never caught cold when I was young and had no kid, but time has corrected both of those things.
It’s nice to be awake for a few minutes, listening to the inane chatter that passes for my consciousness and sharing it with you. Thank you for reading. And thank you, Chicago, for your marathon winds. I thought New York was a tough town. New York ain’t nothing to this.
SLEPT much of yesterday. Slept till 1 PM today. Whatever this bug is I’ve got, it lets me work and care for my child during the week, then flattens me all weekend. Fortunately my daughter can amuse herself for hours, as I could at her age. I hope she will not be as lonely as I was. Am.
IN THESE PAGES I have written on many subjects, but I never expected my ass to be one of them. The untimely passing last year of Hillman Curtis changed that.
Hillman was a friend, an inspiration, an artist admired by many designers and filmmakers. Over a brief but luminous career, he invented himself first as a songwriter in a touring post-punk band, then as an art director and eventually the design director of Macromedia (and Flash evangelist Numero Uno), next as the founder of a boutique design studio and the author of design books that have sold over 150 thousand copies—a staggering achievement in an industry where cracking 10,000 copies sold makes you a rock star.
He was a generous mentor and pal to the digital design community, perpetually sharing his insights and enthusiasm, and encouraging others to do and be everything they could be. If you needed studio space, he would find you a desk. If you were low on funds, he would help you land a suitable gig. Hillman and I worked on a couple of projects together when I first founded Happy Cog. The jobs went well and the work was good. He was a supportive and honorable design director.
Hillman’s final public creative incarnation was as a filmmaker. He is probably best known for his “Artist Series” about designers including Milton Glaser and Paula Scher, and artists David Byrne and Brian Eno.
Even his personal life was inspiring. He had two children and a wife, and the love in that beautiful family could be seen a mile away.
Colon cancer took Hillman from us on April 18, 2012. He was only 51.
I don’t know if Hillman’s cancer could have been prevented with a simple screening, but I know a colonoscopy is recommended for most men and women when they reach a certain age, and I know I love my daughter very much.
And so, this morning, for her sake and per my doctor’s recommendation, I set aside feelings of embarrassment and fears of discomfort and had the test.
It’s really not bad. There’s no pain, it takes only a few minutes, and you’re unconscious.
This post may cross a taste line for some readers; sorry about that. I’m also sorry this page won’t help you write better HTML or sharpen your collaborative skills. But I love you and would like you to stick around.