Updates

Jeez, it's been a while since I've posted, and when I wrote my last post I was in a very dark place and feeling utterly hopeless.

I'm happy to say that things have gotten better: At the end of May, I got a full-time job at an autism-friendly workplace in which I can use my drawing and writing talents. Despite my lack of professional experience in this area, my boss hired me based on raw talent, knowing that my lack of professional experience was likely Asperger's-related and not due to laziness and other factors people are often too quick to assume.

Ironically, I found this job through the school in which I had been taking the web development class. I haven't touched coding since I've gotten the job, however. After all, at long last I have a job doing work based on where my talents actually lie-- writing and drawing-- than in the "practical" areas that society says I ought to have.

While I enjoyed the environment at the school where I took the web development class, the learning process caused me a lot of stress and anxiety; it has since been confirmed that I have nonverbal learning disability, which I think might account for the difficulties I had in learning the material. While I might pick it up coding again eventually, right now I'm glad to be able to focus on my art and writing. I've been going to open drawing sessions, I've taken watercolor painting classes, and in November I'll be going to a one-day writing workshop.

I'm not completely financially independent-- the company I work for is a startup and does not currently offer medical benefits. My insurance is $234 a month (I opted for this more expensive insurance because of a procedure I have to have in a couple days, which will be explained below), and my parents foot the bill for that and help a little bit with the rent. And whenever I take a class, they pay for it. But it's still a far cry from where I was before, 100% dependent on them and feeling completely hopeless about the future.

Another update: In May I learned about something that initially scared me but have since learned is manageable: I have a cerebral aneurysm in my left internal carotid artery. It is 3-4mm in diameter, which is considered small. Since my blood pressure is excellent and because I don't smoke, it is currently not life-threatening. However, this could change as I get older. My neurosurgeon offered (rather than actively recommending, as all surgery comes with some risk) to treat it. I decided to go ahead with it because while right now the chance of eruption is next to zero, in twenty years we're talking about numbers like 10%-- a bit of a game of Russian Roulette. Right now, with the minimal risk, I was also glad to find out that I could even continue exercising-- running, lifting weights, swimming laps-- so long as I didn't do something extreme like run a marathon. Since I was given the green light for exercising, and since summer is my favorite season, I decided to go in for surgery at the end of the summer-- this Wednesday, September 20th, at Massachusetts General Hospital.

So what will they do? Shave my head, drill into my skull, and clip the aneurysm? No. Clipping is a process that is usually done on aneurysms on the surface of the brain. Mine is in my left internal carotid artery, and drilling into my head to access the aneurysm would be pretty risky. The surgeons are going to do a different procedure, one that is often employed for people with aneurysms that are deeper inside the head. They're going to insert a catheter in my femoral artery at the groin, run the catheter all the way up to my head, and deposit some coils inside the aneurysm sac. Since it's a wide-necked aneurysm, they will also put a stent inside the artery to hold the coils in place. The coils induce blood clotting and ultimately seal off the aneurysm opening to prevent blood from getting in. And I get to leave the hospital the next day. Pretty low-key surgery for what is technically brain surgery (sort of; the aneurysm isn't IN my brain, just near it).

Then, my parents will drive me to Pennsylvania, where I grew up and where they continue to live, so I can recover. I'm really excited because some friends that I went to film school with in New York City and who now live in Los Angeles are, ironically, moving to my hometown in Pennsylvania. They are there right now looking for a house, so I'll get to see them while they're there. They're probably going to be moved by Christmas, and they might start coming to my family's Thanksgiving and Christmas gatherings every year. So I'm pretty stoked about that.

However, the reptilian part of my brain is worried about complications during the surgery-- such as the catheter popping the aneurysm-- and I'm a bit nervous about going under general anesthesia because I don't know what it feels like. The idea of having control taken away from me-- "Here, we're going to stick a needle in your arm and you're going to go into medically-induced coma and there's nothing you can do about it"-- freaks me out. But the logical part of my brain thinks that the surgery will be uneventful, and recovery will be a snap. When I had an angiogram (which involves injecting dye through a catheter inserted into the groin, going all the way up to the head), the doctors gave me a sedative that had practically no effect on me. They said that even for a young person, I was unusually awake and alert during the procedure. They explained that it means my liver processes drugs very efficiently. So my guess is I won't be one of those people who is super fatigued after surgery.

Well, that's it for today's post. Sorry it's been so long, but as you can see it's been a hectic year!

The Butterfly Effect

This is a post not necessarily related to Asperger's. It's more for fun than anything else.

What is the Butterfly Effect? It is a metaphor that is often used to describe how seemingly inconsequential actions-- such as a butterfly flapping its wings-- can potentially trigger a chain reaction whose end result is quite significant-- such as a tornado brewing thousands of miles away from the butterfly. This is hyperbolic-- of course a butterfly flapping its wings will not contribute to a tornado, let alone one thousands of miles away. But you get the idea. 

We all experience a Butterfly Effect of sorts in our own lives. For example, perhaps you missed your train and had to wait an hour for the next one. In that time, you sat down next to someone. With time to kill, you struck up a conversation. You hit it off immediately. You talked even more on the train together. You exchanged contact information and… forty years later you are still happily married with two kids, one of which is now in her late thirties and who has just won the Nobel Prize for finding the cure for cancer. In short, if you hadn't missed your train forty years ago, there would be no cure for cancer today. 

That is, of course, an extreme example. But you get the idea. Here's an interesting one from my own life:

If my family had not moved to a new town in 1987, exercise would not be an important part of my life. Wow, that's reaching, right? Or is it? Let me explain:

For the first almost-seven years of my life, my family lived in a suburb immediately outside of Philadelphia. It was getting too congested and the public schools didn't have the best reputation. My parents wanted to move to a suburb that was less congested and in which there were reputable public schools. They found a house in a suburb twenty miles away. 

Okay, but what do wanting to go to public schools have to do with being an exercise fanatic? Do the schools have a renowned physical education program? 

Not quite.

My family is Jewish, and my mother wanted to bring my brother and I up as Reformed Jews (Scenes of her trying to get Dad, my brother and me to go to synagogue on the High Holidays are a lot like scenes of Marge trying to get the family to go to church on The Simpsons, but that's another story altogether). We joined a nearby synagogue. 

A few years later, Mom wanted to send my brother to overnight camp, and she wanted to send him to a Jewish camp. The first one she looked into was too expensive. In the days of no Internet, Mom had to search for another, less expensive camp. Mom asked the Rabbi, who recommended Camp Negev. My brother went there and loved it. I started going there a few years later-- in 1995-- after I was too old to go to the arts day camp I'd been going to since 1989. 

Oh, so Camp Negev has a renowned sports program?

No! Stop being so literal, and let me finish! No, not at all. There was one one-hour sports period during the day, and that was it. The rest of the day included work projects, discussion groups, swimming, electives, free time, and more. 

Having had undiagnosed Asperger's Syndrome, being fourteen years old and having just completed 8th grade-- another year of bullying, the worst so far-- I was so used to grudgingly accepting myself as someone who would have this horrible effect on people. I was convinced that the bullying was my fault, and I didn't even call it bullying. I thought it was a "normal" consequence of me being me. I was so used to this treatment that it was all I knew. Coming to camp, I imagined the usual middle school drama: I imagined girls putting on globs of makeup in the morning. I imagined girls whispering and giggling, and then when I would ask what was so funny, they would laugh and say, "Nothing!" I imagined people hating me, ostracizing me, and excluding me in every way,  no matter how hard I tried. And why wouldn't I think that would happen? It was all I knew.

The first two weeks didn't go so well. I was constantly on the defense, and I assumed the worst about people's intentions towards me. I had Asperger's-style crying meltdowns practically every other day. One of my counselors, Jonas, saw that I was struggling and reached out to me. He listened when I needed to talk. He didn't pass judgment on me, telling me I was immature or that I needed to "get over it", like my (misguided) parents and teachers did. In the throes of adolescence, he was someone I could talk to. He was the friend and mentor I needed. I developed a crush on him-- he was my first crush-- and he knew, but he was generally okay with it (unlike the later crushes, but that's another story, and another blog post). 

When I became more comfortable and at ease it was easier for me to make friends in my group. I discovered that Negev was a very progressive, left-leaning and accepting summer camp. Most of the girls didn't put on makeup. They thought that it was cruel to ostracize others for being different. In fact, many of these kids came from same-sex parent households and some of them were even openly gay or bisexual (unusual for kids in the '90s). They didn't get me at first, but when you're with people around the clock, it is easier for them to get to know and understand you. And they did understand and appreciate me. And I made friends with some of the boys, too. 

I had only been signed up for first session, but I suddenly wanted to stay second session. I almost wasn't able to do it because my parents didn't think they could afford it, but back home, my brother-- who lamented never having been able to stay second session-- convinced my parents to find a way to do it. So I stayed second session.

This has what to do with exercise?

Patience, patience! 

Camp Negev had a special day each session called Revolution, in which the CITs would kick out the counselors and run the camp for a day. Revolution was centered around a theme, such as history, a movie, animals, and more. The theme of Revolution second session was the time-travel movie Bill and Ted's Excellent Adventure. During one activity, we pretended that we went back in time to the era of prohibition. In a game similar to Capture the Flag, people were divided into teams and had to steal the other team's "beer" bottles, while also guarding their own. 

My team was deciding who got to guard and who got to try to steal the other bottles. I was always terrible at sports and terrible at running. Sometimes I wished I were good at sports and could kick total ass in soccer, baseball, etc, and the tomboy in me wished I had the strength to wrestle. But because I was bad at sports, I hated them. During this game, for once I wanted to be on the offensive and try to steal the bottles. I ran across the field to try to get a bottle. A girl on the opposite team spotted me and tagged me. I tried to stop too quickly. My right leg crossed over my left, and down I went . I felt a familiar surge of pain in my left ankle-- I had broken my left finger and my right hand over the past two years-- and I knew instantly it was broken (I could swear that I heard a CRACK when I went down, but I realize that was probably a false memory). I had to go home from camp five days early. And that's tough when every day at camp is like a week. 

After the cast came off, the muscle on my lower left leg had atrophied. It was difficult for me to walk at first. Dad explained to me that this happened because with my leg immobilized for seven weeks, the unused muscle broke down. So every day after school, I went for walks to try to rebuild the muscle. At first, because of the stiffness in the tendons around my ankle, I could only walk down the street and back. As the muscle regrew and the tendons loosened up, I increased this walking route until ultimately I mapped out a two-mile loop. After a couple months, I began jogging. I wasn't very good at it, of course. But I did it.

After a few months of this, Mom suggested I join the track team in the spring. I thought she was out of her mind. But I did it anyway. I always came in last at track meets, but I still enjoyed doing it. I got stronger, not just physically but mentally: the endorphins helped my self-esteem and gave me the strength to stand up to the bullies. I continued running track throughout high school.

The End. 

Or not.

I was very skinny growing up, and I thought it would be impossible for me to become overweight. But it happened. I got into some horrible eating habits in college, and I wasn't running regularly. I struggled with being overweight for several years. Finally, in the summer of 2012, on one particular hot day, I went to the pool (instead of swimming in the ocean, as usual). What was I supposed to do? Just stand there to cool off? Boring. I started swimming laps to give myself something to do, and I realized that I enjoyed it. Over the course of several months, I made swimming a regular part of my life. I adjusted my diet, and the weight fell right off, at a rate of about two pounds per week (although I've gained some back, I'm still within normal limits and am working on taking it off again). 

To this day, three years later, exercise is still an important part of my life. I alternate between running and swimming (though lately it's been swimming because last year I injured my knees while running, which I'm still not over yet) and cardio/weight machines at the YMCA. But I can tell you had I not had that history of running track it would not have occurred to me to take up swimming. I just would have gone to the pool that hot day in 2012, splashed around a bit, and gone home. I had been meaning to put exercise back into my life, but it was so difficult without someone to coach me. Finally, I just made myself do it, and that would not have happened if I had not had a history of exercise to look back on.

So let's go over this Butterfly Effect:

In 1987, my family moved, and we joined the local Reformed Synagogue. My mother wanted my brother to go to a Jewish camp. The one they were looking at was too expensive, so the Rabbi recommended Camp Negev. My brother went to Negev and loved it, so I decided to go there after I "outgrew" my arts day camp. It was tough for me at first because I expected to be bullied, but Jonas reached out to me and made me want to stay second session (and, of course, come back in years to come). During second session, I broke my ankle. After the cast came off, I began daily walks to rebuild the atrophied muscle. After the muscle was restored, I began jogging. Mom told me to join the track team, which I did. I loved exercising, but being human I got into bad habits in college, ultimately putting on weight. At my worst, I was very close to clinical obesity. Years later, on a hot day, I went to the pool to cool off, but ended up swimming laps. It occurred to me that this would be the answer to getting me back into an exercise routine. I did just that, and I'm still in this routine today. 

So yes, moving in 1987 indirectly made exercise an important part of my life.

Could my parents have found out about Negev through a rabbi in our old town? Possibly, but even if they had, there still might have been a huge difference in my experience at Negev. When my family moved, they had me repeat 1st grade to give me "another year to mature". They never would have done this in the same school (kids latch onto that). So if I hadn't moved, I wouldn't have been held back. The age groups at Negev were based on what grade you were going into, not your age. And Jonas-- an important role in this Butterfly Effect, as you've seen-- wouldn't have been one of my counselors. 

As an addendum, with Jonas as an important part of this equation, he had his own Butterfly Effect of sorts that got him to Camp Negev. He and his ex-girlfriend had been working at a different summer camp. But they broke up, and (if I remember correctly) they thought it would be awkward for them to be at the same camp. So she continued working at the same camp and Jonas went to Camp Negev (or they both agreed to go to different camps; I don't remember). Had he not broken up with his girlfriend, I never would have met him, I wouldn't have stayed second session and… you get the idea. No exercise routine for me today.

Yes, that's the effect of the metaphorical butterfly flapping its wings thousands of miles away.

Exercise, The Zone, and Altered States

I don't know what happened. Maybe it was the sudden change of weather, from just barely above freezing to the mid to upper 60s. For years I've said that when the temperature begins to rise into the 60s in early spring I feel like I'm waking up from deep coma. Summer is my favorite season (I HATE winter), and the spring weather just gets me excited for the upcoming months. But something else happened. I'm not sure what. I feel like a switch suddenly flipped in my mind this past Saturday. It is a switch that hasn't been fully flipped in about two years.

What happened two years ago? I lost 30 pounds. But that was only the beginning. I was going to the gym 5-6 days a week; 4 days a week was a "bad" week for me. I was addicted to working out, and in a good way. I enjoyed the euphoria I got after my weekly special "killer workout" which consisted of a 90-minute swim or protracted treadmill running followed by completing the entire circuit of weight machines. The weight just fell off at a steady rate of 2 pounds per week, and I was getting stronger. My state of mind was changing, I was more alert, and I had more energy. Suddenly, the gym was a single-minded focus for me and was a place I looked forward to going to every day. Eventually, I began training myself to run again. Overall, I was constantly in an altered state. I didn't just feel euphoric coming from the gym-- I felt euphoric going to the gym. And this euphoria kept me motivated and energetic and led to a kind of super-euphoria after working out. It was a wonderful cycle that helped me lose weight, condition my heart, and get stronger. I even found myself drawn to healthier foods and less interested in sugar, which caused my weight gain to begin with (it's a VERY powerful addiction, trust me). Why? Again, I don't know. It's like a different part of my brain was suddenly in charge. But I was also eating less, was eating more sensible portions. I wonder if exercises such as running and swimming, which tighten the abdominal muscles, and perhaps press against my stomach, helped to curb my appetite.

But the light from this switch gradually dimmed a year later. How? I don't know. I was still going to the gym a few times a week, but my workouts didn't "feel" the same. Nor was my motivation the same. I was going to the gym as a matter of routine, but only 3-4 times a week. Then last year I gained back 10 pounds because I was starting to eat more sugary snacks again. When I tried curbing these tendencies and running off the extra weight, I found myself starting to get back into the Zone, albeit slowly. I was running almost every day. But just as as the switch was beginning to turn back on, I gave myself patellar tendonitis. After that, I had to go to physical therapy and could only do cycling for several months. How could I possibly get back in the Zone when I was only exercising my legs? How could I feel euphorically motivated to get on a stationary bike and not do much of anything? I needed a full body workout to do that, and I couldn't even swim (I am not good at freestyle, and breast stroke aggravated my knees because of the kicks involved).

As I started to get better, I began using the seated elliptical at the gym. That worked my arms and legs, but I was sitting. It just wasn't enough. It wasn't my entire body. Then last week I made a decision: For one thing, I was going to go to the gym 6 times a week (trainers recommend you take one day to recuperate) like I did before. If my knees hurt after my workout, I'd just ice them. Even if my knees got worse at first, ultimately they would get better if I took some of the extra weight off-- I'm within normal limits (mid 130s), but just barely.

I started going to the gym more often but it still felt partially forced. But then last Saturday I suddenly felt like I was in the Zone again, for the first time since 2013. A switch had flipped in my mind. I was finding myself doing what I did in 2013: getting out of bed and going straight to the gym. Suddenly working out on the seated elliptical even felt a little different. But why? It's the same workout that was boring me. Then yesterday the temperature went up into the mid 60s, and it was a perfect day for a swim. And suddenly I really, really wanted to swim. I went to the gym thinking that maybe I'd swim for an hour, but I ended up feeling energetic from the moment I got into the pool. I ended up doing a 100-minute swim (plus a 5-minute warmup and 5-minute cool down). I was so energized that the altered state that comes from being in the Zone made me feel that just swimming wasn't enough. No. I was launching myself off from the walls, twisting, turning... I almost felt like I could flip through the air like dolphins do when they swim. In this altered state I felt like I was one giant muscle and the pool was my conquest. That was just how I felt two years ago.

When I walked out of the gym I was wonderfully weary and euphoric. I knew that I would have to take the next day off to let my muscles heal. The expression "getting ripped" isn't just a metaphor-- your muscles do tear and you need to give them a day to regenerate after a killer workout. But I didn't want to take the day off. I wanted to go swimming again today, and I found myself counting the hours until tomorrow. Tomorrow I will be swimming for one hour (as I said, killer workouts are weekly). And it will be a vigorous, energetic swim. What's more, I didn't even have to ice my knees after this workout-- the swimming seems to be helping the healing process.

So I feel like I'm back in the Zone. The switch has flipped. I'm in an altered state. I am confident that I will lose the extra 10 pounds by June with an ultimate target weight of 110 by the end of the summer (yes, 110 is within normal limits for my height. If it's too much of a loss, I'll adjust. No big deal.).  Yes, I know gut feelings don't mean anything, but something else is going on. In this altered state, where I suddenly want to practically live at the gym, where I suddenly have little to no interest in sugary snacks, where I suddenly feel like I can just kick ass, I instinctively know what I need to do. Maybe this is just the fact that it's become easy for me to avoid junk food lately. Maybe it's just the fact that I suddenly feel increased energy during my workout and instinctively know how to make these workouts more effective (ie, the twisting, turning, etc. during swimming, for example). Maybe it's both.

But the Zone isn't just my sudden motivation to "live" at the gym. It all ties in with a sudden increase in confidence I haven't had in almost two years (I got fired from two jobs, which was a severe blow to my ego). Maybe it helps that I recently have been able to get work as a freelance writer. But whatever the case, some switch flipped in my mind on Saturday, the same one that flipped two years ago when I started making exercise an almost-daily part of my life. I don't know how it works. If I could bottle it and sell it, I'd be rich. I also wish I knew how to describe this state of mind because words don't do it justice. Unless you've experienced it, you might as well be asking me to describe what the 5th dimension looks like. But I suspect that there's some chemical change going on. I wish I knew. I wish there would be studies on this sort of thing. I'd like to know what the chemical reaction is and what triggers it. Exercise physiology and how the brain works both fascinate me to no end. But whatever the case, I'm feeling much better about life than I have in a long, long time.

I was originally thinking about writing a post about a state of mind that I sometimes get into, which I call the Monster. But this week I was just feeling too damned positive.

On Writing: Just One of Those Moments You Can't Put Into Words

This post has nothing to do with Asperger's Syndrome. It's just a little thing about writing.

Ever have a moment in your life that is too abstract to translate into words? There is a moment from January or February of 2013 that keeps coming back to me, one of those moments that I just remember so clearly. Not just the moment, but the sensory aspects of it. What I was feeling, mentally and physically. But even describing that does not do justice to the abstract interpretation that was going on in my head. 

Background: I was in the process of losing weight, with the goal of reclaiming the long-lost thin, healthy body I had growing up, particularly the athletic, muscular, robust body that I had in high school when I was running track. I had battled a weight problem for eleven years, and in the fall of 2012 I hit upon a solution that worked for me. The biggest change that precipitated the weight loss was not figuring out the process itself, but rather getting in the right state of mind to fully implement that process. It was as if I suddenly flipped a switch in my head and was pursuing this goal with a single-minded focus. Don't ask me how it works; if I could bottle it and sell it I'd be rich (forgive the abuse of an old cliché here). 

What was the moment itself? It happened three or four months into my weight loss journey. I was exiting the Dodge YMCA in Brooklyn, still in the throes of an intense high that I had induced from yet another extreme workout, and feeling refreshed from the shower and sauna that followed. I was acutely aware of every sense that was activated. I have no idea if this was physiological, a side effect of the endorphins that I generated from exercise, or if it was entirely psychological.  I felt a little sore from the workout, a dull aching in my arm and leg muscles, but that was good because it meant I was making progress, slowly turning fat into muscle and strengthening my heart. I was warm from the shower and sauna, and the blast of cold air contrasted it in an interesting way. I hate the cold but for some reason I enjoyed the feeling of it on my face that day and welcomed the crisp smell. I was wearing a winter coat that I had bought when I was thirty pounds heavier, but at that moment I suddenly noticed how huge it was on me, hanging off of my now lean frame. I had a big, involuntary grin on my face. And on top of all this, I was plugged into my iPod, listening to the indie rock song "Hands of Hate" by transgender musician Ryan Cassata. Despite the title, the chorus sounds hopeful, not just in lyrics but in tune. It was when I was listening to the song's chorus that all the other senses I previously described where hitting me full force. It seems that the song was the factor that sealed the moment, if that makes sense.

I was extremely aware of these thoughts and sensations in the period of a few seconds, and yet they just took me several sentences to explain. I just told you what was going through my head and what I was feeling, but I am lost at how to show it to you. You would just have to get in my head, I suppose. But maybe I'll figure out a way to do it. That's one of the challenges of writing. And it's also a testament to how everyone has his or her own subjective experience and often cannot get anybody else to understand it in quite the same way. 

Fight or Flight

Thanks for coming! I'm gradually moving my blog to Substack! You can check out this post here!