bookmark_borderMy heart hurts…

Today, my heart hurts. I feel exhausted, drained, and demoralized. I feel weak and tired, my brain feels dull, foggy, and slow, and my body feels heavy.

I have not been blogging as much as I would like. For the entire month of September, I did not blog at all, and so far in October, I have done so only sporadically. This is beyond frustrating, because there are so many thoughts in my brain that I want and need to express. But I can’t. I simply do not have the time, or the energy. Things have not been going well for me. I have been experiencing autistic burnout for four and a half years, and for the past two and a half months it has been particularly severe. 

The Olympics marked the beginning of this bad stretch of time. Sports have traditionally been one of my biggest special interests, so this was something that I had been eagerly anticipating. But NBC’s coverage decisions meant that I was unable to watch all of the coverage that I needed to. There was simply too much of it. And so what I thought would be both a challenging and exciting experience turned into a nightmare of overstimulation, information overload, mental exhaustion, and sleep deprivation. I managed to alter my goals and mindset regarding the Olympics, allowing me to endure the experience. This was extremely difficult for me as an autistic person, and is something that I am proud of myself for doing. But being proud of oneself for accomplishing something is not the same as having a positive experience. The Olympics turned out to be something that I needed to endure, rather than something enjoyable and rewarding. And that is not great, to put it mildly. Not only was I subjected to an inordinate amount of stress and exhaustion, but I was denied the rewarding experience that I was picturing and expecting. 

Also starting around this time, I began to feel vaguely physically unwell, which continues to this day. I have been suffering from a runny and stuffy nose, sore and scratchy throat, cough, itchy and watery eyes, headaches, earaches, and low-grade fevers. These symptoms come and go, waning and giving me hope that they will finally be gone, only come roaring back the following day. These symptoms haven’t reached a level of severity that would cause me to miss work or cancel any activities that I had committed to, but they have caused me to be constantly miserable. It has really taken a toll on my mental health and quality of life. 

Throughout August and September, I also had an inordinate amount of difficult interpersonal situations put onto my plate to deal with. Texts and messages that I didn’t know how to respond to, uncomfortable phone calls that I had to make, requests for social get-togethers that I knew I wouldn’t be able to do but that were excruciatingly painful to say no to. I have made the decision to quit socializing, because friendships simply don’t work for me given my autism and history of trauma involving interpersonal situations. But people continue to ask me to socialize with them, and every time they do, the wound is ripped open and I essentially am forced to make the painful decision to quit socializing anew. These situations have been emotionally exhausting and have used up a lot of mental resources.

Because of my overall level of exhaustion, I have been sleeping very late, even when I go to bed relatively early. As a result, I essentially don’t have time to do anything other than getting ready for work, and working. I don’t have time to take walks, I don’t have time to run errands, and I don’t have time for writing. Such an enormous amount of time is spent sleeping, that there is no time for anything else. Despite this, I wake up exhausted, and it is painful to wrench myself out of bed. In other words, even this enormous amount of time spent sleeping is not enough. Most likely, no amount of sleep would be enough to make me feel refreshed and well-rested. Normally, I enjoy walking around the pond near my house, in the woods, and in the center of town, looking at the beautiful fall foliage and photographing it. But I haven’t really had time to do this. The fall season is passing me by, and I’m not able to enjoy or experience it in any meaningful sense. This is a depressing way to live. In fact, I would argue that it does not quality as truly living, but merely as existing. 

I’ve also had numerous workdays get screwed up. My work is usually a source of stability and routine. I can focus on something concrete, such as ringing up customers’ groceries at the cash register, bagging the groceries, collecting shopping carts in the parking lot, or stocking groceries in a section of the store. But I’ve been subjected to various instances that have turned my job into a source of dysregulation and chaos. On multiple occasions, I’ve been trapped with slow-walking and talkative co-workers during the commute home, causing me to miss the train and preventing me from doing Italian lessons on my phone. One night, the staff was asked to stay an hour late (not a problem in itself) and a co-worker pressured me into getting a ride home with another co-worker rather than taking the train as I usually do (apparently thinking, for some reason, that the fact that it was an hour later made it unsafe to take the train). Another night, the manager didn’t give clear instructions, so I didn’t know what section of the store I was supposed to work on or when I was supposed to stop. And another night, too much frozen food was ordered, so I ended my shift by pushing boxes of food with all my might in a (futile) attempt to force them into the completely packed walk-in freezer.

Worst of all, when my manager was explaining how the Columbus Day holiday would affect projected sales, one of my co-workers interrupted to “correct” the holiday name to “Indigenous Peoples’ Day.” When my manager responded that people could call the holiday whatever they wanted to, another co-worker interjected, “As long as you don’t call it Columbus Day! Anything but Columbus Day!” If you know anything of my feelings about Christopher Columbus, you won’t be surprised to learn that this caused me to be flooded with excruciating, agonizing pain. And it brings me to the next cause of this recent exacerbation of autistic burnout: Columbus Day.

Given that I love Christopher Columbus more than anything in the world, Columbus Day should be the best day of the year for me, or at least a better than average one. But this year at least, it was horrible. I attended and sold my artwork at an Italian festival, which should have been fun and exciting. However, I had to stay up late the night before in order to get my work ready, it was cold, rainy, and windy (all things that severely bother my sensory sensitivities), and a friend came by to sit at my table and help break it down at the end of the event (despite the fact that I had previously told her, as nicely as possible, that I did not need or want her help). This all amounted to an uncomfortable, angering, and draining experience. Instead of celebrating and honoring the man I love, I spent the day coping with an experience that was exhausting, out of control, and chaotic. 

Plus, as has been the case every year starting in 2020, various people, companies, and organizations used the occasion to attack Columbus, and therefore myself. I am too mentally exhausted and in pain to describe these things in detail, but the culprits include various cities and towns, American Gril (yes, the doll company), and every museum and park in Boston. Every time I see the words, “Indigenous Peoples’ Day,” I am filled with agonizing pain. There are no words that can adequately express the hurt of seeing other people’s perspectives validated, suffering acknowledged, cultures celebrated, and voices heard, while my perspective is dismissed, my suffering ignored, my culture shamed and condemned, and my words ridiculed. No matter how hard I try, I cannot force others to listen to my ideas, understand my point of view, or empathize with my pain. When you combine this with all the other things that I’ve described in this blog post, I feel beaten down. My spirit is crushed. So many things that used to give me pleasure have been taken away, contaminated, ruined. There is almost nothing that I can direct my time, energy, or attention towards that does not cause excruciating pain. It is difficult for me to see a path forward.

I am trying to keep the faith. I am trying to remind myself that I have felt this way before and have survived, and have returned to a state of happiness again. I am trying to remind myself that at some point in the future, my body will have more energy, and my brain will once again feel sharp. But right now, that isn’t the case. Right now, everything feels heavy, dark, and hopeless. Right now, everything hurts.

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

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_borderMy recent experience with autistic burnout

For nearly four years, I’ve been experiencing autistic burnout. I’ve been trying – with some degree of success – to make changes to my life in order to recover from this burnout, but a complete recovery still remains elusive. The burnout has been hitting really hard over the past couple of weeks.

Unlike in previous years, when the statue genocide has made me so disillusioned with the entire society that participating in its traditions has seemed vapid and pointless, there are actually a variety of things that I am excited to do this holiday season.

The problem is that no matter how hard I try, I can’t seem to find the time and energy to do them.

I feel run down and worn out. I keep running into obstacles that, if I were in a better mindset to begin with, I would probably be able to overcome. But when I feel this tired, I lack resilience, and tiny obstacles are enough to completely defeat me. Little glitches, mishaps, and irritations keep happening, my brain keeps exploding, and large amounts of time keep being consumed by recovering from the brain explosion, with no possibility for accomplishing anything productive. And then, the inability to accomplish anything productive makes me frustrated, and my mood turns low and negative, and I start to lose hope that I will ever be able to do the things that I want to do. All of which makes me more susceptible to exploding if another obstacle happens.

To give just a few examples, over the past two weeks, my brain has exploded at:

  • After signing up to have my artwork displayed in a gallery, finding out that I would be required to put price stickers on each piece of artwork (I didn’t have any suitable stickers, so fulfilling this requirement would require me to spend money to purchase stickers)
  • Having to fill out a form on a website, but being unable to click on the “submit” button because it was covered by a banner regarding cookies, and the only way to make the banner go away was to check a box indicating that I agreed to the use of tracking cookies, which I wasn’t willing to do because I don’t believe in tracking cookies
  • Designing photo cards and calendars using a photo website and finding out that the shipping charge was significantly more expensive than I had anticipated
  • My Mom asking me if I was losing my voice, a question that didn’t make sense to me because I had lost my voice for a few days due to a nagging sickness, and at that point my voice was finally starting to come back
  • My Dad asking me if I wanted apple pie when I was in the middle of reading an article
  • My cell phone running out of power and needing to be plugged in for 3 hours before it was able to be used
  • Leaving work at the same time as a couple of co-workers and ending up walking to the train with them and riding the train with them, which deprived me of the alone time that I needed in order to decompress after work

I am not sure what came first, the exhaustion or the parade of frustrating little things. Regardless, I feel trapped in a cycle of being so run down that my brain explodes at the tiniest of things, making me even more run down and even more susceptible to my brain exploding.

Lately, it feels like all of my time and energy are spent merely coping with each day. It feels like I have been surviving, not living.

The Christmas cards, which I ended up ordering despite the unreasonably expensive shipping costs, actually came out really good, and I want to actually mail them.

I’d like to get a Christmas tree and decorate it with the historical figure themed ornaments that I’ve collected over the years.

I of course want to put up Christmas lights near my Stonewall Jackson statue, and possibly on the front of my house as well.

I’ve taken photos of the Christmas decorations near where I work, and the Christmas tree at the pond near my house, and I would also like to take photos of the nativity scene at the church near my house.

I would like to see the Napoleon movie, and possibly bring my mini metal version of Napoleon with me (because clearly, going to the movies with a toy soldier for company is a completely normal thing for a grown adult to do).

I want to do more artwork – there are countless ideas for drawings floating around in my brain that I have yet to put down on paper.

I want, possibly, to start a social media account dedicated to historical figures, where I would re-post / share news about new statues being made, photos from reenactments and celebrations, drawings and paintings and AI art of historical figures, and similar things.

All of these things are important to me.

Perhaps most of all, writing is important to me. I want to do more of it, both on this blog and in the form of a fantasy book series and an autobiography / memoir. What has happened to statues and monuments over the past four years has completely traumatized me and altered my life forever. Writing is the way that I process and respond to it. I am also becoming more aware of how my identity as an autistic person is intertwined with the statues. I want to write more about the statues, about my personal experiences as an autistic person, and about how these things intersect. I feel that I have a unique viewpoint and perspective, and my ideas aren’t like anyone else’s. It might sound arrogant, but I feel that my viewpoint, my perspective, and my ideas deserve to be shared, and no one can do that but me. It would not be an exaggeration to say that the ability to write and to share my ideas is necessary for me to have a life that is worth living. It is incredibly frustrating to keep not having the time and energy to do it.

But as you can see from the fact that this blog post exists, I did succeed in finding some time for writing today. So there is reason for hope.

Perhaps the solution is to schedule time on the calendar for drawing and writing, so that my chunks of free time don’t get eaten up by small tasks such as paying the water bill, sweeping the floor, or doing the laundry. This is something that my therapist suggested, but which I’ve struggled to implement. If I don’t have actually have time for both household tasks and writing, which seems to be the case given that doing the household tasks causes my potential writing time to disappear, then the only logical result of scheduling time for writing will be for the household tasks to go undone. And it is kind of important for me to pay my bills, to wash my clothes, and to keep my house reasonably clean. Scheduling blocks of time for certain activities doesn’t magically create more time; it’s just a form of arranging one’s activities differently. If the underlying problem is that I don’t have enough time for everything, my thinking goes, then rearranging things doesn’t really do anything to solve that problem.

Perhaps the solution is to do little bits of writing and drawing whenever I have spare time, instead of having the mentality that it isn’t worth starting unless I have a large chunk of uninterrupted time in which to work.

Perhaps the solution is to be more disciplined and to do little bits of drawing and writing instead of unproductive activities such as reading articles or scrolling through apps.

Perhaps a solution is a combination of these things.

Regardless, I won’t give up hope. I will keep trying to create a better life for myself, a life in which I actually have the time and energy for the things that are important.