Category: personal

bookmark_borderThe agony and the ecstasy of the Olympics for me as an autistic person

Posted on by Marissa

For me as an autistic person, the Olympics is one of the most exciting things in the world, and also one of the most torturous. Sports are one of my special interests, so one would think that the Olympics would be heaven for me, with two and a half weeks of non-stop coverage of gymnastics, swimming, diving, track and field, equestrian, fencing, shooting, and more. But this is the exact reason why the Olympics have the potential to become my own personal hell. A hell filled with overwhelm, stress, chaos, mental exhaustion, and information overload.

I will start by explaining why I love Olympic sports so much. I think what I like most about watching sports is that they have clear procedures, rules, and processes for determining the winner. Every sport has a system, whether that consists of judges giving scores for each competitor’s routine, a horse and rider receiving faults for each rail they knock down, or simply a clock determining who crosses the finish line first. No one knows in advance who the winner is going to be, but one can expect that the competition will unfold according to a familiar and predictable process. For me, watching a sports competition means watching it in its entirety, from beginning to end. It means watching all the coverage that is available. I love to watch the entire process unfold, from the opening video montage, to the heats with dozens of competitors that no one has ever heard of, to the semifinals, to the finals, to the post-race interviews of the winner(s).

As anyone who has glimpsed the Olympics broadcast schedule knows, the sheer amount of coverage is so huge that it is impossible for one person to watch it all. And this makes my brain go crazy. I have a perfectionistic, completionist mindset, to put it mildly. I am a very all-or-nothing person. If I am into something, I tend to become really obsessed with it. If I like something, I am not content merely to have a little bit of it; I want all of it. I find it preferable not to do something at all, than to do it in a way that falls short of my standards of completeness. So when the Olympics come around every two years, I don’t want to miss any of the coverage. I want to watch it all. But because of the enormous amount of coverage, missing some of it is unavoidable. The result is having to make excruciating, nearly impossible decisions about which events to watch and which to miss.

Leading up to this Olympics, I knew that it was going to be a challenge. I knew that difficult decisions would need to be made. I knew that I would likely need to set my alarm in the morning, that I might need to record certain events to watch later, and that I would have to minimize (and carefully time) outings outside of my house. But I was up for a challenge. I was mentally prepared, and I was excited. I had spent hours upon hours catching up on all of the Olympic trials coverage that I had missed over the past couple of months due to my work schedule. I had worked hard to put myself in a position that would give me the best possible chance at success.

Watching the hour-long intro show that aired before the very first events of the Games – preliminary soccer matches that took place two days before the opening ceremony – I was happy and optimistic. The video montages were exciting and the commentary interesting. Everything was elegant and appealing, from the NBC studio in Paris, to the pictograms that represent each sport, to the fonts and graphics used during the broadcast. It was particularly cool to see images of the statues, monuments, and famous buildings in Paris, and I was hopeful that watching the Games unfold among these iconic landmarks would be somewhat healing after the traumatic events involving statues that I’ve detailed at length in previous blog posts. 

But then, shortly before the opening ceremony on Friday, June 26, I checked the TV listings for the following day (Saturday) in preparation for planning a watching strategy. And what I saw made me sick to my stomach. Watching these Olympics was not going to be a challenge; it was going to be impossible.

The competitions started as early as 3:30 in the morning and continued throughout the entire morning and afternoon, usually on 3 or even 4 networks at once. The idea of waking up at 3:30 seemed ridiculous, but recording these events would not work either, because there was no window of sports-free time later in the day in which to watch them. And missing out on these events would be completely unacceptable. The sports taking place at ungodly hours weren’t limited to the ones that I (comparatively) don’t care much about, such as soccer, handball, rugby, cycling, table tennis, badminton, and wrestling. Nor were they merely “borderline” sports like rowing, kayaking, and archery. The ridiculously early sports included my favorites, such as equestrian, diving, swimming, and gymnastics. Missing those would defeat the entire purpose of watching the Olympics.

In other words, even after narrowing down the sports as much as I possibly could, even after eliminating all but the absolute must-watch events… the amount was still not even close to being manageable. 

So my brain exploded. I screamed at the top of my lungs, again and again and again. I pounded my feet on the floor. I punched the walls and the couch. I threw various objects. 

After this explosion of rage, I made the decision to boycott the Olympics. Given that NBC’s coverage choices made it impossible for me to watch in a way that was acceptable to me, I preferred not to watch at all. I was so angry that the mere thought of the Olympics filled me with disgust. 

The following day, I woke up feeling like someone was hammering an ice pick into my forehead. It was the worst pain I have ever experienced. Not only was I completely unable to function, but merely existing was agony. The pain made it impossible to sleep, and neither Tylenol nor aspirin did anything to relieve it. The only activity that was possible for me to do was lying in bed in excruciating pain. The entire day was essentially lost. Watching the Olympics, even if I had changed my mind and decided to do so after all, was impossible. 

But as night fell, the agony finally abated. I realized that the Olympics primetime show was starting soon. And I decided to put it on. Watching the abridged versions of the day’s competitions, knowing that I had missed out on the full, live versions, was a foreign and bizarre experience for me. It was simultaneously torturous and interesting and enjoyable at the same time.

When the broadcast ended, I pulled up the TV listings for the following day. The feelings of overwhelm and frustration started to return. Gymnastics and equestrian were again slated for 4:00 in the morning, followed shortly thereafter by swimming and then archery and then more swimming. I could set my alarm for 6:00 and miss only one session of gymnastics qualifying, I thought to myself. I could set it for 8:00 and miss two sessions but at least catch archery. Or I could set it for 10:15 to ensure that I at least woke up in time for the second session of swimming. I went to bed feeling unsettled, but not nearly as out-of-control as I had felt the night before. 

Miraculously, I woke up, without having set an alarm, at 7:30. Turning on the TV mid-competition, and therefore missing the beginning, is completely at odds with the way that my brain works, but that is exactly what I did. With the early morning sun casting beams of light across my living room, I watched the heats of the men’s individual medley and heard the crowd’s chanting for Leon Marchand reverberate through the stadium. Over the next few hours, I flipped back and forth between channels, catching portions of swimming, gymnastics, archery, equestrian, shooting, basketball, canoe slalom, and skateboarding.

It was painful to watch the third subdivision of women’s gymnastics qualifications, knowing that I had missed the first two, and it was similarly torturous to watch the cross-country equestrian competition, knowing that I had missed the dressage round in which a competitor had set a record for the best-ever score. But I enjoyed getting to experience a variety of different sports, and getting to watch them live, at the time that they were actually unfolding. I enjoyed switching from channel to channel to check out what was happening. I enjoyed watching gymnasts of all different countries, some of whom I’m not familiar with, and some of whom I recognized because they competed in the NCAA. I liked the introductory video to the equestrian competition, which explained the scoring system. I enjoyed the fencing competition, held in the magnificent, theater-like venue called the Grand Palais. And I even enjoyed catching a few minutes of skateboarding and basketball, even though these are not sports that I’m usually super interested in. 

It turns out that losing an entire day, although excruciating in terms of both the physical pain and the sports missed, was necessary. The way that I had been approaching things was not working, and my body and brain forced me to stop. Losing an entire day allowed me to reset, to approach the Olympics with a completely different attitude, and to rediscover what had made sports my special interest in the first place.

Because in addition to the fact that they have systems and rules, I love sports because they make me feel connected to the world around me. I love to watch competitions unfold in real time, knowing that others all over the world are watching them as well. I love that no one knows what the outcome is going to be, and that everyone simultaneously finds out the result in real time. It makes me happy to know that I am watching sports together with millions of people, even though I don’t know them and am not interacting with them

With previous Olympics, I watched as many live sports as humanly possible, and I recorded the rest. Inevitably, the recordings would pile up to a point where I felt that I had no choice but to stay up late trying to get them watched. Inevitably, the second round of a competition would come on before I had a chance to watch the recording of the first round, and I would have to either watch the rounds out of order, or record the second round too. Inevitably, I would begin to cram in a few minutes of recordings here and there whenever I had a spare moment, causing me to miss the beginnings of live competitions when they invariably started earlier than I expected, and also causing me to miss out on the experience of watching Olympic sports that I wouldn’t necessarily have sought out. In general, this way of watching the Olympics created a jumbled, chaotic sports mess that was no longer enjoyable. The sports had gradually transformed over the years, from something fun into something that needed to get watched, a task that had to get done, an item on my to-do list that I aimed to get rid of as quickly as possible. Paradoxically, as I became more and more into sports, the thing that made me enjoy sports in the first place, had been lost.

Over the past couple of weeks, I have been getting up at a reasonable hour and simply watching whichever sports I can, while forcing myself to be okay with missing the rest. Watching the Olympics with this new philosophy has been simultaneously agonizing and exhilarating. Doing anything in a way that falls short of perfection is completely at odds with the way that my brain works. It is a situation in which no option feels right, but I feel that this one is better than the alternatives of either missing out on the Games entirely, or completely destroying both my sleep schedule and my brain in a futile attempt to catch everything. I am proud of myself for being able to adopt this new approach, because I know that the past version of me wouldn’t be able to do so. I am not an Olympic athlete, but in a way, I am doing the impossible every day of these Olympics, and I think that is pretty impressive.

bookmark_borderRevere Beach Sand Sculpting Festival 2024

Posted on by Marissa

Last week, I visited and took photos of the sand sculptures at Revere Beach. A sand sculpting festival and competition takes place there every year in July. Due to my job which requires working on weekends, I wasn’t able to attend the festival itself, which took place Friday through Sunday. But I do enjoy looking at the sand sculptures, so I decided to visit them on Wednesday morning.

I was concerned that the sculptures would have deteriorated by that point, three days after they were built. I was also concerned that the beach would be windy, as it often is. As a person on the autism spectrum, I have sensory sensitivities to wind, which have become more severe in recent years, and can cause spending time outside to become excruciating. The wind was quite painful during the walk from my house to the train station, which boded ill. Plus, people began getting on my nerves during the commute by doing various annoying things such as invading my personal space, blocking my way, and getting onto the train before I had a chance to step off. I was starting to regret making the journey.

But as I crossed the bridge from the train station to the beach, I was pleasantly surprised to find that there was almost zero wind. The day was cloudy, cool, muggy, and still. I was equally pleased to find that the sand sculptures were in pristine condition. They had not deteriorated at all, and were magnificent to behold, as they are every year. They were located conveniently between the Wonderland and Revere Beach MBTA stations, making for an easy walk. Despite it being three days after the festival, there were lots of people milling about and admiring the sculptures, but not so many that it was impossible to move about freely or get good photos (as is often the case during the festival). Overall, it was a successful and pleasant experience, and I am glad that I went.

Among my favorites were the cat and mice, and the chameleon. Hopefully you enjoy the photos below:

You can view more photos on my photography website here.

bookmark_borderFour years ago today…

Posted on by Marissa

Four years ago today, a sequence of events began, which changed my life completely.

Over the past four years, I’ve experienced unimaginable pain. Pain more excruciating than I thought was even possible for a person to feel. Pain so overwhelming that for the first few months I was reeling, in shock, unable to truly comprehend what was happening or to find adequate words to express how I felt about it. Pain that will take a lifetime to fully process. The events of the past four years have made the world a worse place to a degree so enormous that it is still not fully comprehensible. For a large percentage of this time, I believed that suicide was the best option, given the extent to which the things that make life worth living have been destroyed.

The BLM movement, the “racial reckoning,” the push for racial justice, the statue takedown movement, DEI, political correctness, “woke” ideology…. whatever term one uses, this movement and this ideology did not originate on this date four years ago, but they did rise to power and prominence. What happened four years ago enabled this ideology to become mainstream, to dominate our society, to become the norm. And make no mistake: it is an ideology of authoritarianism and intolerance that has inflicted tremendous harm.

This movement claims to be all about diversity, when in reality it is waging a cruel and brutal campaign to obliterate from the world all forms of diversity that actually matter.

This movement claims to value inclusion, at the same time that it calls for anyone who is different from the norm to be attacked, condemned, and exiled from society.

This movement claims to strive for equity, when in reality it has perpetrated injustices so egregious that they shock the conscience.

This movement claims to fight for the oppressed, yet it itself is the cause of oppression.

This movement claims to help marginalized people, while stomping on the faces of those who are truly marginalized.

This movement insults and shames me for allegedly having “privilege,” when its adherents are the ones who actually hold privilege in our society.

This movement condemns people who have done nothing wrong for allegedly “causing harm,” when its adherents are the ones causing horrific, agonizing, and indescribable pain.

This movement lectures people about empathy, at the same time as it itself demonstrates appalling lack of empathy.

Black Lives Matter, people chanted in the streets, repeated mindlessly in their social media posts, and pontificated in self-righteous press releases. But what about my life? Why does my life not seem to matter in the eyes of society?

People pontificate about “the harm done,” but what about the harm done to me? Why does that not seem to matter in the eyes of society?

It boggles the mind that a movement and ideology could portray itself as, and be perceived as, something so much the opposite of what it actually is.

Because this movement and ideology are profoundly immoral. This movement has inflicted immense harm on the people who deserve it the least. Its ideology is cruel, intolerant, destructive, totalitarian, and completely lacking in empathy. At its core, this movement and ideology are about compliance and conformity, about obliterating all meaningful diversity from the world, about condemning and destroying anyone who dares to be different, to challenge authority, or to diverge from social norms in any way. That is why underdogs and rebels are its targets. This movement is about awarding further benefits to those who are already the best-off in our society, providing further validation to those who need it the least, and inflicting further hurt on those who are already facing the most significant challenges, struggles, and difficulties. This movement’s rise to power has been, by far, the worst thing that has happened in the history of the world. Its adherents do not hold the moral high ground.

But the events of the past four years have also caused me to realize what matters. For too long I had been spending my time and energy on things that are not important, things that I felt I had no choice but to do, because other people expected them of me. But now I have realized that historical figures are the true purpose of life. This does not make the atrocities that have been committed any less atrocious… but I have found a meaning and purpose that I did not have before. The historical figures will live on through me. I will continue to share my perspective, because despite what our society says, it is just as valid and correct as anyone else’s. I will stand up for the historical figures and for myself. I will do whatever I can to honor them and bring them justice.

bookmark_borderA meltdown caused by blogging time being cut short…

Posted on by Marissa

Today, I feel horrible. I woke up to find little pieces of paper – the remnants of the envelopes and advertising that had come in the mail – still scattered all over the floor. My throat is horse and my head achy from screaming, again and again, at the top of my lungs. My hand is bloody and swollen from punching the granite kitchen counter. My feet and ankles are sore from stomping again and again on the floor. I am concerned that the foundation of my house might be damaged from all the stomping, and that my hands might become permanently damaged from these repeated injuries, if they are not already. This is a particularly disturbing possibility given that my job centers on picking up, lifting, and handling objects with my hands. I feel guilty and demoralized. I’m angry – angry at others, angry at myself, angry that instances like these keep happening. My body feels heavy and tired. My chest is tight, my arms and legs leaden, my stomach twisted in knots.

Yesterday, I had a meltdown because my blogging time was abruptly cut short.

I was at my parents’ house, and the plan was to watch Survivor, as well as the Bruins game. Survivor was on from 8:00 to 9:30, and the Bruins game started at 7:30. So, in addition to being able to watch a half hour of the game before Survivor, we would also be able to watch the end of the game, because it would almost certainly still be going when Survivor ended. Then, after the game ended, I would go home. My parents and I all agreed to this plan, and I was looking forward to the night of TV watching.

Personally, I never just sit and watch TV. It doesn’t work for me to sit and passively watch without anything to occupy my hands. Plus, I live with a constant backlog of topics that I want to blog about, making it foolish not to take advantage of every potential chunk of blogging time that I get. So whenever I am watching a TV show or sports game, I blog at the same time. Usually, it works well.

The thing about blogging is that it is highly momentum-dependent. It’s not the type of task that you can do a little bit of whenever you have some time. Blogging works much better when you have large, uninterrupted chunks of time, because it is mentally laborious and requires focus and concentration. Usually, once I sit down to work on a blog post, it takes me some time to get momentum going, to get into a state of flow. Once I am into this flow state, I am very productive. The writing flows effortlessly. I can keep writing and writing and not get tired at all. Because I work full time and own a home, I don’t get a lot of opportunities to get into this flow state. And when my momentum is interrupted, it’s difficult to get it back.

Yesterday, when Survivor ended and my dad changed the channel to the game, the third period was just beginning, and the Bruins were losing 3-1. My dad asked me what I wanted to do. I was surprised, because I thought everyone had agreed to the plan of watching the rest of the Bruins game after Survivor. Why would he be asking me what we should do, when the answer to that question had already been decided upon? *

Plus, for the preceding two hours, my blogging hadn’t been going smoothly. I was getting bogged down. What I thought would be a quick, easy blog post turned out to be more complicated and difficult than I had anticipated. But as Survivor was ending, I was finally making great progress. I was finally getting into a flow state, and finally starting to feel good about how the writing was going. My dad’s suggestion to leave came at the worst possible time.

My dad indicated that he was okay with staying for the rest of the game, unless the Panthers scored another goal, making the score even more lopsided. Naturally, about 30 seconds later, the Panthers scored. And so my blogging time was abruptly cut short. The momentum that had just started to get going, came to a screeching halt. **

There was something about having my blogging time cut short, without warning, that made my brain explode. It’s not just the fact that I had to leave at 9:30 as opposed to approximately 10:00. It’s the fact that I was expecting to have until 10:00, only to find out, without advance notice, hat I only had until 9:30. It’s the fact that I was counting on having until 10:00, only to find out at 9:30 that I was expected to leave immediately. I hadn’t gotten my belongings together or put my socks or shoes on, and I had been planning on getting another helping of ice cream and another helping of water. I wasn’t prepared to leave, because that’s not what I was planning on. I thought that I had an additional half hour of time left. It was another instance of the type that I’ve written about before – an instance in which things did not unfold according to the picture I had in my head. ***

And so I exploded.

I simultaneously knew that my anger was irrational, and lacked any ability whatsoever to stop it.

The rational part of my mind was fully aware that it did not make sense to be that angry at something so relatively unimportant. The rational part of my mind was even aware that if I hadn’t gotten so angry, I would have been able to open up my computer upon arriving home, resume working on the blog post, and possibly finish it, all while watching the end of the Bruins game on my own TV. In other words, if I hadn’t gotten so angry, I would have been able to avoid the very outcome (the premature end to my blogging time) that I was so angry about.

But none of this knowledge had any power to make me any less angry. Rage coursed like molten lava through my veins, overtaking my mind and body and soul. The anger was so strong that nothing could stand in its way. It took over my entire consciousness. Logic was feeble and powerless in the face of the overwhelming, uncontrollable fury. Like an erupting volcano, or an exploding bomb, once the anger started, there was no stopping it.

So I was completely consumed by anger, while simultaneously knowing that it was irrational. I feel guilty, because my dad didn’t really do anything wrong. One day my parents will be gone, and I don’t want incidents like this to be the main thing that I remember from my time with them. I feel frustrated and demoralized, because I’ve tried so hard to prevent these types of incidents from happening, yet they still keep happening. I feel conflicted, because I truly believe that autism is a gift and a superpower. I’m proud that I have it, I don’t consider it a disorder, and I don’t wish to be neurotypical. But these beliefs seem to be incompatible with the fact that my autism causes me to feel and behave in ways that I know – at the exact same time that I am feeling in behaving in these ways – are irrational.

I know that my ability, and need, to hyperfocus are part of my autism. I know that it is part of my autism to have problems with transitioning from one activity to another, and with unexpected changes to my plans. It is due to autism that I need such copious amounts of blogging time, due to autism that it causes me such distress to have that time interrupted, and due to autism that once I get into a flow state it is difficult for me to stop.

Perhaps the reason why my anger exploded so severely yesterday is because I initially tried to suppress it. I reluctantly agreed to my dad’s request to leave after the Panthers’ 4th goal, pretending that it was okay with me, even though it wasn’t. I didn’t want to inconvenience him, I didn’t want to be high-maintenance, and I didn’t want to cause a conflict. It wasn’t until I got back to my house and shut the door behind me, that the anger exploded. Perhaps I should accept my needs as an autistic person, even if they seem unreasonable to others, rather than suppressing them. Using willpower and self-discipline, forcing myself to tolerate things that upset me, might work in the short term but are not long-term solutions. Acting as if you do not have the needs that you have, does not cause you to stop having those needs. It causes the needs to go chronically unmet. And that will eventually result in an explosion.

* When my dad and I discussed this today, he explained that for him, it’s not enjoyable to watch a game when his team has no chance of winning. He would rather watch a competitive game between two teams that he doesn’t care about. For me, although I prefer the Bruins to win, the score has no impact on whether or not I want to watch the game. The important part of watching the game, for me, is watching the athletes warm up, make their entrance, go out through the tunnel, etc. and watching the video montages and the interviews before and after the game. All of these things take place regardless of what the score of the game is. And all this is, of course, in addition to the blogging that I was counting on doing while watching the game.

** “Couldn’t you just finish the blog post at home?” you might be thinking. But unfortunately, the mere process of having to pack up my laptop, put my shoes and socks and jacket and hat on, get into the car, get out of the car, check my mail, unlock my door, and unpack my stuff again, is enough to shatter my concentration and ruin my blogging momentum. More often than not, once my momentum is brought to a screeching halt by the process of leaving, it is sufficiently late that it doesn’t make sense to start up again, and so my blogging time for the day is done. And also more often than not, the following morning is filled with various tasks, and then I have to go to work, and then I get home too late to start blogging, so I don’t end up having another opportunity to blog until my next day off.

*** There were also a couple of other things weighing on my mind that may have contributed to why I became so angry. Recently, I made the decision to completely quit socializing (as radical as that may sound) but was second-guessing that decision because I heard about an all-you-can-eat ice cream event that actually sounded like it could be fun to go to with a particular group of friends. Additionally, two people have asked me to do drawings, which is flattering and awesome, but cuts into blogging time, making the blogging time while watching TV even more crucial.

bookmark_border“The Sounds of Spring” – a poem by me

Posted on by Marissa

A police car’s siren cuts through the early morning fog;
The song of leaf blowers heralds the start of a new day.
Trucks of different shapes and colors,
Carrying oil, lumber, trash, debris,
Rumble through the intersection.
At the pond, the clanging of hammers
Mingles with the wooshing of the fountain
And the cheerful chirping of birds
Perched in the blooming pink and white trees overhead.
A friendly brown duck quacks as she waddles along.

bookmark_borderEmbracing imperfection

Posted on by Marissa

As a person on the autism spectrum, I have a tendency to be a perfectionist. I tend to have a picture in my head of how the day is going to go, and tend to become very upset if things do not go according to how I pictured them. I struggle with being flexible, and tend to feel that if things do not go perfectly, then everything is a disaster and the day is ruined.

(Lately I had numerous instances of things getting messed up and not going according to plan, which I wrote about here.)

A couple days ago, however, I had some success with embracing imperfection. 

It was a warm and sunny morning, and I decided to take a walk around the pond near my house. The trees were still blooming with beautiful white and pink flowers. After my camera had inexplicably decided not to work, I had done some troubleshooting, and I thought that I had fixed the problem. So I brought it along to take photos. Imagine my shock and dismay when, again, the shutter button refused to work, in exactly the same way it had earlier! I angrily trudged home and sulked around. But then, a little while later, I decided to return to the pond and take pictures with my phone. 

Although I much prefer to use a “real” camera, it was better than nothing.

I enjoyed being outside in the beautiful weather and looking at the trees, flowers, ducks, geese, and trucks rumbling to and from the construction site at the top of the hill. 

Farther away from my house, there is a park with a World War I memorial, which is decorated with different flowers depending on the season. I knew from seeing the park in passing that there were currently bright yellow daffodils and beautiful tulips planted there, but I hadn’t had time to actually stop and get close-up to take photos. A sufficient amount of time had gone by that I figured the daffodils would be wilted and sad-looking. But after my walk around the pond, I had extra time, so I decided to make the walk to the park anyways. To my surprise, the flowers, even though they weren’t in absolutely pristine condition, still looked beautiful.

And even though I was stuck using my phone as opposed to my “real” camera, I still got some pretty good photos. 

The moral of the story: An imperfect day can still be a good one. “Plan B” is not as good as “Plan A,” but it is better than nothing, and it is certainly better than giving up on the day entirely. 

bookmark_borderA week with too many things going wrong

Posted on by Marissa

During the past week or so, too many things have been going wrong. Too many mistakes, fails, mishaps, fiascos. None of the things are particularly serious in themselves, but combined, they feel like an avalanche, a cascade, a tidal wave of badness.

It started with a UPS fiasco. I bought a retired American Girl doll named Caroline from an Amazon seller, but the UPS driver could not find my house. I received an email prompting me to go to the UPS website to either confirm or correct my address, and I confirmed that I had entered my address correctly. The same exact thing, however, happened again the following day. I emailed UPS to give them directions to my house, but the same thing happened yet again! So I called them (something that is very difficult for me due to my shyness). The driver was finally able to find my house, but not until I had already left for work (I work afternoons / evenings). This would be fine, except for the fact that a signature was required for the delivery. So UPS informed me that they were sending my package to a convenience store that doubles as a UPS access point. I figured, therefore, that I would be able pick up my package up the next day before work, but it didn’t actually get to the convenience store until late afternoon. So I had to wait until the day after that. On that day, as I was about to leave for the convenience store, my mom texted, much earlier than I was anticipating, to let me know that she was ready to meet for lunch before work. So I had to wait another day. Finally, I made it to the convenience store and excitedly told the cashier I was there to pick up a UPS package. She asked for my ID, which, to my dismay, I realized I did not have. (I had brought my credit card, debit card, and subway pass, just in case I might need them, but it didn’t occur to me to bring my license.) Because an ID was required to pick up my package, I returned home empty-handed, having made the 40-minute round trip walk for nothing.

(Wow, that paragraph turned out to be really long!)

The fiascos continued from that point, with the following being a few examples:

  • When I went to Starbucks before work, they got my drink wrong, giving me a smaller size than what I had paid for. I brought it back (difficult for me due to my shyness) and they got it wrong again!
  • My neighbor called me, texted me, and then began banging on my door all while I was in the middle of a therapy appointment via zoom. I was having tree work done in my yard, and feared that something seriously bad had happened, such as a tree falling on my neighbor’s house and destroying it. I didn’t know whether to continue with the therapy appointment or to tell my therapist that an emergency was happening and that I had to go. I opted for the first option, but was so distracted that I wasn’t able to absorb anything my therapist was saying. It turned out that my neighbor’s issue was not urgent or time-sensitive at all.
  • I was asked to work an overnight shift, and my parents and I made plans to have dinner at a nearby restaurant before work, something that I really enjoy but don’t often get to do because I usually work at dinnertime. I packed a bag of the things that I would need for work and put it in the trunk of my mom’s car. Before dinner, I worked out on my parents’ exercise bike (which I use sometimes because I don’t own one myself). We got into my dad’s car, drove to the restaurant, and parked outside it. I opened the trunk and was appalled to find no bag inside. Neither my parents nor I put two and two together to realize that because the car that was used to drive from my house to my parents’ house was a different car than the one used to drive from my parents’ house to the restaurant, I would need to move my bag from one trunk to the other. I ended up in tears and feeling so sick that I was unable to eat anything, and my dad ended up having to drive back to the house to get the bag.
  • At work, I was assigned a block of time to collect shopping carts in the parking lot, but I didn’t, because I didn’t know I was supposed to do that during that block of time. (I really enjoy collecting shopping carts too; I just completely forgot that I was supposed to do it.)
  • I decided to walk around the pond near my house and take photos of the pretty trees, because the white and pink flowers were beginning to bloom and looked really beautiful. When I reached the beautiful trees, I took my camera out of my purse, turned it on, composed the shot, and pushed the shutter button. Nothing happened. I pressed the shutter again and again, but no matter how hard I tried, my camera was unable to take photos.
  • An extremely embarrassing incident happened at work, in which I got one customer confused with another and said something to him that made absolutely no sense, because I thought he was the other customer.

None of these things are the end of the world, exactly, but with so many of them happening within a relatively short amount of time, I am stressed, angry with myself, and filled with self-doubt. My life has been filled recently with one setback after another, and I haven’t been able to fully recover from each setback before the next one happens. I keep getting knocked off-balance, and there is no time to re-stabilize before I am knocked off balance again.

Some of these fiascos are just bad luck (e.g. Starbucks, my neighbor, my camera), while others (not bringing my license, failing to ensure that my bag was in the correct trunk, mixing up my work schedule, mixing up two customers) are arguably my fault.

The fact that I am on the autism spectrum relates to this string of fiascos in two ways: first because my brain is more likely to fail at certain types of tasks, and also because I tend to become more upset than the average person when a relatively minor fiasco happens.

I have a very high IQ, and my brain can do many things that the average person’s can’t. But I also have a disability, namely autism. Although I excel at math, reading comprehension, memorizing facts, and understanding complicated logical concepts, I struggle with things that most people consider to be “common sense.” I tend to forget / misplace / lose track of things; I tend to do badly with social interaction, which includes recognizing and remembering people; I tend in general to fail at things that others find simple.

I also tend to become completely unglued when an unexpected problem occurs.

As I exited the convenience store and walked, dazed, through the parking lot, I was overwhelmed with anger and frustration (at myself, not at the cashier, because the ID requirement logically makes sense). I could feel heat rushing through my body. It felt like the world was spinning around me and I was lost at sea without a paddle, buffeted about by the waves. Even though I knew logically that nothing disastrous had happened – there was nothing time-sensitive within the package, and I could go back and pick it up the following day – I was overwhelmed with emotional upset.

Similarly, the moment I discovered that my camera was inexplicably not working, I was filled with rage so strong that I wanted to kick the nearby wooden bench and smash it to pieces. As I repeatedly turned my camera off and back on again, scrolled through all the different menus trying to figure out what had caused the problem, and tried every possible combination of settings, a lump formed in my throat and tears came to my eyes. Despite knowing logically that I could take pictures with my phone instead, I was overwhelmed with emotional upset by the fact that I was expecting my camera to work the way that it usually does, and it didn’t do that.

The reason these types of things are so upsetting to me is because, as an autistic person, I start each day with a picture in my head of what is going to happen. I expect and need things to go according to this picture. When they fail to do so, my brain basically goes crazy.

In that moment outside the convenience store, all I could think about was that I had planned to pick up my package that day. Not the following day.

In that moment at the pond, all I could think about was that I had planned to walk around the pond and take pictures with my camera. Not with my phone.

I could not access logic in those moments, because I was so overwhelmed by the fact that things did not go according to the picture in my head. Knowing intellectually that the problem wasn’t a big deal didn’t make me feel any better. I couldn’t move on to alternative plans, such as picking up my package the next day or taking pictures with my phone, because my brain was stuck on the picture of how the day was supposed to go.

So over the past weeks I’ve been beating myself up, both about this series of fails and about my reaction to them. I know that I tend to lose track of simple things, so I use compensatory strategies such as setting reminders, using calendars and checklists, and double checking to make sure I haven’t forgotten anything. I know that I struggle with facial recognition, so I make a deliberate effort to remember people’s features, hats, and clothing items. I’ve been beating myself up about the fact that despite being aware of my weaknesses and taking measures to compensate for them, I still failed. And I know intellectually that picking up my package the next day and taking pictures with my phone are perfectly good options, so I’ve been beating myself up for emotionally falling to pieces over what are objectively minor setbacks.

I am generally perceived as being relatively “high-functioning” compared to other people on the spectrum, and other people with disabilities. I live by myself, I work full-time, I don’t go to a day program, and I don’t have a legal guardian or conservator. I take pride in these things and, quite frankly, want it to stay this way. It is important to me to live a life in which I move about freely and make my own decisions, as opposed to being supervised at all times and having my schedule and activities organized by someone else. I don’t want to be a burden, or a pain in the butt, to the people around me. I don’t want to be erupting in emotional outbursts, ruining dinner plans, requiring people to rescue me from crises, or disrupting people’s days with my needs. I want to be a competent person, both at my job and at the tasks that need to be done outside of work. I want to be a person who is calm, logical, and put-together. I want to be able to complete my activities of daily living independently. I don’t want to be dependent on others.

Weeks like this make me doubt myself – my own competence, my own capabilities, and my own ability to function in the world. Recently my new statues have arrived, something that I know intellectually is far more important than any of the fiascos that I’ve described. These past weeks should have been filled with joy and excitement, but instead they’ve been filled with emotional turmoil. Hopefully I will have a relatively fiasco-free stretch of days, and what I know intellectually to be true will also feel true emotionally.

bookmark_borderThe statue family expands…

Posted on by Marissa

On Tuesday, April 2, at about 9:30 p.m. a large black truck pulled into my driveway. Inside it were two new statues, coming to live with me. 

That’s right, two.

One of these statues was Robert E. Lee. This statue, I had been anticipating for a while. About a year ago, I paid the deposit for him, and over the course of the year I received pictures documenting the process of creating him, from sketch to clay model to molds to finished product. Watching my statue come into the world was such a cool experience. Once the finishing touches were complete, I put the delivery date on my calendar, and I was eagerly anticipating seeing my new statue in person.

Four days before Lee’s arrival, the company that makes the statues asked me if, by any chance, I might want a statue of Nathan Bedford Forrest as well. This statue had been made at the same time as Lee, for a different person, but the original buyer had backed out. I thought it over for about 24 hours and, being me, said yes. 

So, wrapped in blankets inside the truck on that cold and drizzly night were two new statues: one that was made for me and one that I adopted. Forrest was closest to the door, and a little ways further inside the truck was Lee. The statues were lifted out of the truck and placed in their new home. 

Here is what they look like in daylight. In my opinion, they are the most beautiful sight imaginable. 

From left to right: 

General Robert E. Lee. He’s 4 ft tall, weighs 130 lbs, and is based on the statue that used to be in the state capitol building in Richmond, Virginia, as well as the one that used to be in Washington, D.C. He is one of a batch of 10 Lee statues that were made.

General Nathan Bedford Forrest. He is 4 ft tall, weighs 90 lbs, and is one of a batch of 5. Because he was a cavalry general, most statues depict him on horseback, and this is the first time a standing statue of Forrest has ever existed.

And of course… General Thomas “Stonewall” Jackson, who has been with me for one and a half years now. He is happy to have some friends!

I am having some landscaping work done in the yard, which is why Stonewall is not in his usual spot. For now, the statues are hanging out in this gravelly area off to the side. The weather has been rainy and yucky for the statues’ first week in their new home. Hopefully they don’t mind it too much! Once the weather improves, I will get them set up in a prettier, more permanent way.

I love the statues and am so happy to have them here. They mean so much to me.  

bookmark_borderPrevious me would have loved going to a Red Sox event…

Posted on by Marissa

On Saturday there was an open house at Fenway Park to celebrate the new baseball season. It featured autograph signings by former Red Sox players, photo ops, mascots, and a chance to run/walk around the bases on the field.

This is the type of event that previous me would have been all over. I would have set my alarm, walked to the train station, and taken the Orange Line and then the Green Line to get to the ballpark. I would have jumped at the chance to add to my autograph collection, take a selfie, and post the fun pictures on social media.

I didn’t go to the Red Sox event.

Current me is very different from previous me.

Due to the way that the city of Boston and its sports teams handled the statue genocide – by failing to speak out against it and in some ways by actively supporting it – I’m not the enthusiastic Red Sox (or Bruins or Celtics, for that matter) fan that I once was.

My job situation and daily routine are also completely different. I work in the evenings and therefore tend to go to bed late and get up late. I don’t have to set an alarm for work, as I did for my 9-5 job, so I avoid doing so at all to the maximum extent possible.

Additionally, as a single adult, I do unfortunately feel awkward asking famous athletes for photos and autographs. I think it’s wrong that our society considers these types of things to be “for kids,” because I believe that all people should be treated equally regardless of age, but unfortunately it does. I am now too old to pass for a teenager, and I feel that I will be perceived as weirder and weirder the older I get.

But most of all, I have found over the past four years that I gain the most happiness from focusing on my inner world and not focusing on the outer one as much. The activities that I gravitate towards consist of drawing, writing, spending time with my statues, and organizing my toy soldiers and dolls. I am not as strongly drawn to activities such as following sports, walking around Boston, photographing the city, and attending events.

Our society has this idea that withdrawing from the outside world is somehow unhealthy, or even a “symptom” of depression. But I have found that this is the healthiest way for me to live. I wish more than anything that the terrible events of the past four years didn’t happen, but they did. Given this reality, it makes me happier to focus on the historical figures that I love, and the imaginary world in which they reside, rather than on the society that has hurt and rejected me. And I have read that doing fewer activities is exactly what helps with recovering from autistic burnout, something that I’ve been struggling with for many years.

So for now, I am making a deliberate decision to live a slower-paced life with more free time. I am going to do the things that I feel like doing, rather than pushing myself to get up before my body naturally wants to in order to attend events that I don’t have the energy for. I am going to do activities that bring me joy, rather than ones that are filled with reminders of the trauma that I’ve experienced. (Of course, some activities have the potential for both these things, which can make the decision about whether to do them or not difficult, but I will deal with those as they come up.)

bookmark_borderSensory sensitivities aren’t as bad when you don’t have to hide them

Posted on by Marissa

Yesterday I was walking to the train station after work, and I was in agony. As an autistic person, I have severe sensory sensitivity to wind. As I speed-walked down the sidewalks and ran across the streets, trying to get to the station as quickly as possible, air blasted brutally and relentlessly in my face, freezing my cheeks and nose and causing excruciating pain throughout my entire body. 

As I waited for the train, exhausted and trying to recover from the assault, I dreaded the walk at the other end of the commute, from the train station near my house, to my house itself. This walk is more than twice as long as the one from work to the station, and there was no reason to believe the wind would be any less vicious. Because I had gotten out of work a few minutes late, there was no way I could catch the bus from the station.

After getting off of the train, I took my time securing my hat on my head, putting on my gloves, and making sure my scarf covered as much of my face and neck as possible. By the time I stepped out into the painful conditions, the crowd of people from the train had dispersed. Because there was no one to feel self-conscious in front of, I muttered under my breath as I walked. I complained, sometimes profanely, about how painful and horrible the wind was, about how wrong it was that work got out late and cause me to miss the bus, about how bizarre it was people could walk around and exist in these conditions as if nothing was wrong, and about why the heck humans hadn’t invented a way of preventing such atrocious weather conditions from occurring. 

A remarkable thing happened as I made my angry way through the streets: the wind wasn’t as bad as I thought it would be.

When the ice-cold blasts of air started to increase in frequency and severity, I turned around and walked backwards. That way, the back of my head sustained the brunt of the assault, as opposed to the bare skin of my face. This slowed down my progress considerably, and I must have looked like a complete lunatic to anyone who happened to be observing from the houses that lined the streets, or the cars that occasionally passed by.

But miraculously, it worked. Freed from the obligation to act in a socially acceptable manner, I was able to take the measures that I needed to take in order to minimize the pain. Wearing the warmest clothing possible, walking as quickly as possible, walking backwards when the direction of the wind demanded it, and expressing my anger and pain, all combined to reduce the amount of suffering that I was subjected to.

My past self, if faced with this same situation, might have forced herself to walk quietly and forward-facing at all times, perhaps even with a smile on her face. And then, upon arriving home, she would probably have commenced screaming, kicking furniture, and throwing things immediately after stepping through the door. But because I gave myself permission to do what my body needed, regardless of how it looked to other people, I was able to survive the journey home with a minimum of suffering. 

In the autistic community, the act of forcing oneself to appear socially acceptable is known as masking. This is something that I’ve done to a very high degree for almost my entire life. When I mask, I force myself to hide my sensory sensitivities and other autistic traits. I pretend that I am okay when I am not, I pretend that I am happy when I am miserable, and I pretend to like things that I don’t. I force myself to behave the way that “normal” people behave, even when it goes against my preferences, needs, and true nature.

I wonder how much of autistic people’s suffering is caused by sensory issues themselves, versus how much of our suffering is caused by depriving ourselves of the things that we need to manage the sensory issues, out of the belief that these things would look “weird.” Is it autism itself that makes life difficult, or is it masking?

To a large degree, I think the answer is the latter. Masking is something that I am trying to do less of. I am no longer willing to deprive myself of the things that I need, and subject myself to needless suffering, for the sake of looking “normal.”