Lemons and Lemonade (or "The Silver Lining Around the Mushroom Cloud")

As always, names have been changed...
It's just about 5 months into this COVID-19 pandemic. Since then, Massachusetts, which has done a great job of containing the virus, has entered phase 3 of reopening. On July 5th, I took the subway (mask on, of course) for the first time since March, getting myself the hell out of Quincy and going to Cambridge to go swimming in an outdoor pool. The outdoor pools are open (at lower capacity), and so is the gym. While going to the pool at the gym or an outdoor public pool is not a risk-free activity, I feel it is one of the safer risks I can take because chlorine kills the virus. I've also recently gotten to see one of my friends who already had the virus in April. He had a high fever, which indicates a strong immune response, and thus some type of immunity developed in the end. My doctor confirmed that right now he likely has some immunity, though we don't know enough about COVID-19 to know how long it will last. So I felt comfortable seeing him. I've also extended my social circle a little and hung out with my cousins, who came for a visit from Providence.

This pandemic is frustrating to no end. Until there's a vaccine, it's hard to know what the future will hold, and I dread this winter when people will be forced inside and given more opportunities to spread the virus. Even now in the summer I feel a little anxiety of what's to come next. This is one of the most horrible things to have happened in The United States (maybe THE most horrible?), with more casualties than 9/11.

That said, it is also one of the best things that has happened to me. Before anybody decides to twist things around, reads the wrong thing into my statement, no, I am not saying how wonderful it is that we have a pandemic that has killed hundreds of thousands of people. Rather, I'm saying that there's a silver lining around this mushroom cloud, a lemons and lemonade kind of thing that's happened to me in its aftermath. For one thing, I am doing a lot of writing. I'm well into writing a novel. I've tried writing many different novels over the years, but have had structural problems and have found myself stuck after writing the beginning, or have ended up writing a crappy draft. This time is different. What is also great about developing this novel is that I'm writing with characters I came up with at the end of 1996, characters who I've tried over and over to get a story out of but have been unable to. Until now. I think I'm really going to do it this time.

Additionally, stuck in full quarantine in March, April, and May, my mind started to wander. I thought back to the summer of 1997. I remembered my group trip to Israel, where I had an obsessive, autistic-style crush on a counselor named Chuck, and how I chased him around like I was Pepe LePew. This severely disrupted my experience and left me embarrassed about my behavior for years. I have had a few brief, superficial communications with Chuck over the years (ICQ, email), and we've been on Facebook together since 2008. We never kept in touch in any meaningful sense of the term. But with my wandering mind, I decided to message him. We had a good conversation, and ended up Skyping-- twice.

During our first Skype chat, Chuck and I hit it off right away and had some interesting discussions-- it turns out we have quite a bit in common, including a shared interest in brain science. We had a few good laughs about the funny things that happened on the trip in the summer of 1997. We also talked very frankly about my embarrassing behavior. I said, "Yeah, I had a thing for you and I had the subtlety of a hand grenade about it. I was embarrassed about it for years." Chuck shrugged, laughed, and said, "You were a teenage girl. These things happen. I'd like to think I handled it well, but I'm sure sometimes I didn't." I told Chuck that I gave him a lot of credit, that while he didn't always handle it well, he did the best he could for a young guy working in an era where autism was virtually unheard of. Having this discussion with Chuck was very cathartic and gave me a lot of closure that I never really had about that rough period in my life. He lives nearby, and I look forward to meeting up with him, and I hope to also meet his wife and two kids. This, of course, will probably only happen after a vaccine is developed, or when Chuck is at least more comfortable expanding his social circle during the pandemic.

Chuck isn't the only person I've reconnected with. I reconnected with Jonas, my counselor at Camp Negev and friend and mentor throughout my teenage years. Oh yeah, and my first crush. Yeah, I tended to get crushes on counselors... wow, what a dork I was! Anyway, he and I had kind of a falling out in the spring of 2001, and I haven't seen him since then. Our communication was limited to the occasional email and Facebook comment. However, we cleared the air about what happened back in the day (which I really don't want to get into the details of right now). At first, Jonas was not sure it was a good idea to video chat, but a month later, after hearing me on an alumni section on a camp podcast, he changed his mind. A couple weeks ago, we talked on Zoom. We had some good laughs about camp memories, and we filled each other in on some of what we've been up to over the past 19 years. Jonas ended by saying, "Let's stay in touch." He lives thousands of miles away, but the next time he is in New York City visiting his in-laws (which I suspect will only happen after a vaccine is developed, so I think we're talking about at least a year), I will probably head down there to see him. I definitely look forward to meeting his kids (I already know his wife; she went to the same camp).

I also reconnected with Amelia, a close friend from my age group at Camp Negev. Like Chuck and Jonas, we had been on Facebook together for years but didn't have much communication. We had a nice Skype chat and, like in my chat with Jonas, we filled each other in on what we've been up to over the past several years. She lives in the south, so it'll be a while before I get to see her in real life. I hope she comes up to Boston at some point. Or, perhaps I'll go down there. We'll see. If nothing else, we're just about due for another Skype session.

In short, because of this pandemic, I've been writing like a madwoman and reconnecting with old friends (Jonas and Amelia) and acquaintances (Chuck-- now a friend? Not sure how he'd classify the relationship from Skype alone). This mushroom cloud has indeed had silver lining, and I've turned some lemons into lemonade.

With all the horror stories that have happened as a result of COVID-19, it's nice to be able to hear something positive. Let me know in the comments if you have similar "lemons and lemonade" stories that have happened as a result of this pandemic!

Prosopagnosia (Face blindness)

Jeez, I can't believe how long it's been since I've written a post! I really need to write these more often.

Yes, it's been far too long! A lot has happened since my last post. For one thing, I'm no longer in Boston but in nearby Quincy. The landlord for my old apartment sold my unit-- which had been a steal-- and everything else in the area was approaching New York City prices. Quincy is expensive too, but still a bit less than Boston. It's also near the subway lines, so I moved to my new place-- a nice, one-bedroom apartment-- at the end of last October. I miss living in Boston proper, but at least I'm in a large apartment instead of a studio.

So, today's topic is prosopagnosia... let's discuss!

I am one of many people on the autism spectrum who also has prosopagnosia. Prosopagnosia is a neurological condition that makes it difficult for the afflicted to recognize faces. In my case, it takes me longer than other people to learn new faces. Some people have the condition so severely that they fail to recognize family members-- even spouses-- if they so much as wear a drastically different hairstyle.

I was only identified with prosopagnosia recently, but I long suspected that I have it. I am just terrible at learning new faces. When I was a teenager on my group trip to Israel, I made a friend on the first day. The next day, the friend changed her clothes and I didn't recognize her. This eventually passed, but it took a few days for me to be able to recognize her no matter what she wore.

Throughout my life, I've asked the same new people their names over and over again. It takes me a while to be able to recognize someone at work out of context. As a kid, other kids took advantage of this aspect about me by harassing me, knowing I could not report them because I wouldn't know who they were. Sometimes, my mother would ask me, "Who are these kids?" I would say, "I've never seen them in my life." Except I probably had, several times! When my parents would drop me off at a camp event during the school year, they would ask, "Do you see anybody you know?" I would quickly scan the area for kids in my group, because they were the only kids I recognized. Even if I didn't spot them, sometimes I'd lie and say, "Yes" because I knew that I was supposed to be dropped off at a particular spot anyway, and I'd find them. I didn't want to deal with my parents asking me why I didn't know if I saw other kids from camp, even if they thought such a question would help me.

Prosopagnosia can often be embarrassing. Even before I knew the word for it, I felt ashamed of my problem. Whatever it was, I knew it was an issue that other kids didn't deal with. Sometimes in school if one "friend" was gossiping about other kids, she would say, "Oh, so you know So-and-So?" I would say, "What about her?" And she'd say, "Well, do you know who I'm talking about?" I would lie and say, "Yes," just hoping that the friend would get the story over with. I felt like a complete idiot because I knew that whoever my friend was talking about was probably in several classes with me. But what could I do? The same thing that closeted gay kids did (and probably still do sometimes) when asked, "Who do you have a crush on?" They just play along, pretending to be what society deems "normal" so that they won't be humiliated. And when I worked as a children's librarian, I felt like a complete jerk for not knowing the kids' names. I knew that people probably interpreted that as me not caring. I think it's worse for a woman to have prosopagnosia, because in society women are expected to have the "nurture" setting as their default. That's not me.

And to be honest, while I do care about humanity at large and about individual people once I get to know them, at first glance human faces are all but meaningless to me. Until I get to know the person-- or at least something about them-- I see just a meat bag, a naked mole rat-- take your pick. And I actually wonder if this has something to do with my demisexual/demiromantic orientation. Think about it: Most people get into relationships after an initial attraction based on physical appearance. That doesn't work for me. It's literally impossible for me to think of someone as romantically/sexually attractive until I get to know them in some way. And if people are "meat bags" to me at first glance, why would I feel attracted to someone? As is with demisexual and demiromantic people, attraction is very rare for me.

But as for prosopagnosia as it affects my daily life, fortunately as society marches forward through the 21st century, there is greater understanding. People at work know that I have it, and they don't judge me if it takes me forever to learn new faces or if I get two new people mixed up. They understand and we laugh it off. I'm now comfortable telling people outside of work that I have this problem, and am glad to be living in a time where we can address these issues openly and frankly. There's less anxiety involved when I can just explain to people that, yes, I'm terrible with faces, and yes I will ask your name over and over.

Yes, and so what?

The Summer of 1998

The summer of 1998 doesn't seem like sixteen years ago. I'm not sure how long ago it seems, but it does not seem like sixteen years ago. I suppose what it comes down to was that it was a huge turning point in my life in terms of how I understood myself, the world, and in my place in it.

In June of 1998, just a few weeks before leaving for what (unknown to me) would be my final summer at Camp Negev, I made a huge discovery. Or, that is, I thought I did. After years of wondering what it was about me that was so different, wondering why I was always off in "my own world" and why I got obsessed with movies as well as any guy I had a crush on, I literally woke up one morning and thought to myself, "I have Obsessive-Compulsive Disorder." At the time, it was the closest I could come to labeling myself. Asperger's Syndrome was barely known at the time, and not having heard of it, OCD seemed like the only logical explanation. After a couple years, I realized that wasn't it (and, of course, I didn't know what it was). I compare my experience to that  of many transgender people, who have not yet heard the term "transgender", initially misidentifying themselves as gay. Kim Pearson, of Trans Youth Family Allies, calls this mislabeling "in the absence of reflection." The mother of an FTM transgender child, in an interview she talked about her son initially coming out as a lesbian "in the absence of reflection." In other words, her child looked out into the world and didn't see any examples of himself. He felt masculine and thought, "Masculine females are lesbians. That must be what I am." But that label never felt right to him. It was only when he heard the term "transgender" that everything finally began to make sense to him; he realized that he was actually a boy trapped in a girl's body. In my case, I looked out into the world, didn't see examples of myself, and thought, "People who get obsessed with things have OCD. That must be what I have." 

Although the OCD label proved to ultimately be wrong, the attempt at diagnosing myself that summer made me aware of something: some people are simply HARDWIRED DIFFERENTLY. This had never occurred to me before in my life. I realized, "If I'm hardwired differently and I know this, I can understand myself better." I came to Camp Negev that summer fully ready to not only embrace this understanding but also to be the best C.I.T. I could be-- at age 17, it was time for me to enter the C.I.T. program at camp. As it turned out, however, camp wasn't ready for me to take this next step. It turned out that the only reason that I got accepted to the program was because my counselor friend and mentor, Jonas, demanded that the camp accept me, which they were originally not going to do. I was allowed to be there, but they would not let me work with kids. For the first time, I realized, "They won't let me work with kids. It's not because I'm a malicious person or someone who would hurt the kids, but it's because I'm hardwired differently and they don't understand me." 

The other C.I.T.s, however, had known me already for three years and did understand me. Most of them thought the whole thing was unfair. The camp director told me I could work with kids second session (halfway through the summer) if I proved able to work with them. Do you sense a Catch-22 here? How could I possibly prove myself if they didn't want me near the kids? In fact, I recall constantly referencing Catch-22 throughout that summer. I was given kids second session, but apparently only after director and some other counselors were up until 3:00 A.M. discussing it. 

It was around this time that I began to be disillusioned with the social politics of Camp Negev and also see a greater hypocrisy in the world. I could have understood the concerns of the counselors and the director if most people on staff were responsible, caring counselors. But they weren't. Most of them simply worked at camp to be with their friends. I was appalled by some of their conduct. Many of them left their kids alone in the cabins and went off to the staff lounge to smoke weed. Some of them were nasty to the kids. I found this hypocritical at a camp that specifically preached social justice. In fact, during second session when I was at a staff meeting, a group of counselors was talking about an eleven-year-old kid with four-doses-of-Ritalin-per-day ADHD. They said that he was a horrible kid, that he was hopeless, and that he deliberately misbehaved. I did not take this lying down. I told the counselors that the kid was just that-- a kid. He was a kid with ADHD and, thinking of my own epiphany at the beginning of the summer, one who was hardwired differently. I tried to explain that to them but they just laughed at me. What made this even more disgusting was that the meeting was in a cabin cubby and some of the kids were in the next room. I warned the counselors that the kids might be listening. I know I would have at age eleven. Throughout the summer, many of these same counselors were very short with this kid who, as far as I could see, was well-meaning and not malicious. I remember thinking, "I hope when it's his turn to be a C.I.T. in 2004 he doesn't have to go through what I'm going through" (fortunately, years later I learned that he got into the C.I.T. program with no trouble).

From that summer I also took away another lesson that still resonates: It's not what your intentions are, or even what your actions are. It's about how well you cover up any mistakes that you make. Let's use the metaphor of getting caught with your pants down. Socially savvy people get caught not just with their pants down, but peeing or pooping on the floor, masturbating, you name it. They laugh, wipe their hands off, and pull up their pants. No big deal. As someone with Asperger's, when my metaphorical pants fell down (accidentally, of course) at camp, I could not pull them back up with the kind of finesse that the others could. To them, it looked like I committed a serious infraction. This is metaphor of course, but in terms of what actually happened? It was okay for these counselors to go off and smoke weed instead of watching the kids, or to browbeat a kid with ADHD because that was a socially acceptable thing to do. But if I tripped and fell and reflexively said, "Oh, shit!" when a kid was within earshot? Forget it. The whole universe collapsed on itself and within an hour everyone at camp knew and I was read as an unstable person who shouldn't be near kids. Never mind that these kids really liked me. I recall one fellow C.I.T. commenting that she was impressed by how much initiative I took in terms of spending time with the kids.

I should mention that since 1998, Camp Negev (not its real name) has changed drastically and the leadership is much better. It is no longer acceptable to leave the kids unattended or to smoke weed at the camp. As I understand it, it was in or around 2002 when some serious changes began to take place. I couldn't tell you exactly when it happened, because I could not get hired as a counselor. Further down the line I learned that there is Asperger's awareness training that takes place during orientation. However, since 1998 I have still seen this dynamic of "getting caught with one's pants down" in the real world. If anybody besides me gets caught screwing up, no big deal. It's an isolated incident. If I do? People read way too much into it and what my intentions are and what it means about me. In some cases, this type of misunderstanding has gotten me fired from jobs. 

And finally, one thing I began to notice in the summer of 1998 that sticks with me to this day is that when I think a situation is going downhill or that something is going on regarding me that I'm not aware of, I'm usually right. I may have had difficulty with social cues, but during the summer of 1998 I picked up on subtle cues that led me to correctly believe that people were scrutinizing me beyond the superficial (ie beyond "prove that you can work with kids"). I knew very clearly when they said one thing and all I was hearing was the tip of the iceberg. "We have some concerns." There was a time when I would have read that as, "We have some concerns." In fact, I think many people would. But ever since 1998, that word has been more loaded for me. "Concerns" means, "You are a problem and we are watching every move you make. And everything you do is subject to microscopic examination." Beyond this example, I can't articulate exactly what I mean. But I've seen it a number of times since then. I have had to learn to read more deeply into things than most people, because they don't have a history of social failure.

Despite everything, the summer of 1998 was overall a fun, memorable summer for me. But I still won't forget the frustration I felt in certain situations. And because of the lessons I took away from it that are still relevant, it does not seem as long ago as it should.