9

That’s how many years it’s been since my mother died, today. It’s an unfathomable number that I don’t expect will get easier to understand as the years pass. I thought today of the morning she died. That first day is the worst—to wake up with her in the world, and to go to sleep and she’s gone. The day after that was the next most difficult: the first full day in a world without her.

I remember everything about her. I remember the scar from the grease burn on her left arm that she said she got when she was working at McDonald’s at sixteen. I remember the way her breath smelled; I catch the smell here and there from time to time and can’t describe it but can always remember. I remember how the back of her head looked. I remember her toenails and the shape of her belly and the two rosy spots on her cheeks. I remember that even though she preferred comfort over fashion in her 40s, her outfits always matched perfectly. I remember the sound of her laugh, and the different tones it took depending on how hard she was laughing. I remember the way her nostrils flared in time with her laughter and the “ksskssksss” sound she would make when she was laughing so hard she couldn’t catch her breath.

It has been impossible for me to convince myself that she isn’t still “out there somewhere.” I know the reason for this is that she missed my adolescence because she was in Europe for its entirety. My muscle memory still operates as though if I haven’t seen her in a while, it just means that she is elsewhere in the world. I don’t know if I’ll ever fully convince myself that she isn’t just hiding out somewhere and I just need to know where to look.

There was a meme going around Twitter today that said “Introduce yourself with the thing that almost killed you.” Most of the responses are what one might expect. “I’m Jason, and this is a Mack truck.” “I’m Serena, and this is a blood disorder.” Well, I’m Rosie, and this is my grief. PTSD has altered my personality and I don’t remember what I was like before she died. Nine years on and I can still sit for hours in my car, unable to move, unsure where to go or what I used to do with my free time aside from survive to the next day.

For all that she was and wasn’t, she was my mom. My mama. I would give anything to be able to hug her again, to tell her I love her and to hear the sound of her voice. I miss you every day, you magnificent human.

derailment.

About four years ago, the relationship that I long believed would be my last, ended. He came from a culture and family where it was unacceptable to marry outside the culture. For a long time, I was allowed to believe that our relationship would end in marriage. But it was not to be, and I was only made privy to this information a couple of months before he left the city and we broke up so that he could become engaged to someone deemed more “appropriate.”

We have stayed friends, in a very minimal sense. He lives back in his home country now with his wife and parents. We text each other every couple of months with life updates. I recently stopped hearing from him as often and had suspicions, which he confirmed today: he became a father for the first time last month.

As I said, it’s been four years. I fully and sincerely believed that I had moved on; I have dated other people (though no serious relationships, I don’t really “do” those anymore). But somehow hearing this news threw me. I am very happy for him. I always knew he would be a good dad. But I found myself sobbing when he told me via text.

My autism and past trauma means that I become very attached to people who show me love and affection. My partner in a relationship essentially becomes a “special interest,” in the parlance of autism. I don’t become obsessive, but I do lose interest in seeking out any other romantic prospects. My relationship with this person was different from any other I’d had in my life. There was mutual love and caring. I was so used to giving my all to a relationship where I received the bare minimum in return, and this relationship was very different. It was my longest and most serious romantic relationship.

I will be 32 soon. The damage from the abandonment associated with the way that relationship ended means that I avoid romantic relationships at all costs, even though the lack of intimacy in my life is a loss keenly felt. I don’t trust myself enough not to become too attached to people now. The news today just feels like a reminder that it could have been me if I’d been from the “right” culture; that it would take years for me to trust and love another person enough to want a family with them; that by the time I decide to make myself vulnerable again and reach that point with another person, it will likely be too late for me to have children in the “typical” way.

I mask this by insisting outwardly that I don’t want to have children. It’s what most people closest to me believe to be true. And in a way, it is true—the idea of having kids just for the sake of having them has always felt foreign to me. What I wanted before kids was to be in a mutually loving, caring relationship to the point that having children seemed like another good thing to add. To be so in love with someone that you want to carry it through to other people. To trust someone enough to want to raise children with them and not constantly fear they’ll drop everything and leave you on a whim. To essentially not do what my parents did to their kids and each other.

There isn’t really a point to this post and it’s not meant to be useful to anyone but me. Just having some raw feelings that I wanted to get out and maybe get someone to see that I’m hurting.

An incandescent rage

As I write this, my city and dozens of others are under curfew, in an effort by elected officials to curtail a right afforded every citizen under the First Amendment: the right to peaceable assembly and protest. The police have once again murdered a Black man, for the crime of bench warrants and being afraid. A father barely out of youth himself. A mother’s son. A man deserving of dignity and life.

If I sound like one of those SovCit dingbats with the “constitutional rights” stuff, I don’t mean to. I don’t believe free speech is absolute. But I also do not care one whit about “looting” and “property damage” when again and again, the Black community is shown how blatantly their lives are devalued by an entity ostensibly set up to protect them. How on earth can we expect brutalized populations to react calmly when these things happen to them without any accountability, time after time?

Everyone calls for “due process” for the police involved in these murders that never have an adequate justification. What of the due process owed Daunte Wright?

If you’re a 25-year veteran of the force and cannot remain calm enough at a TRAFFIC STOP to differentiate between your firearm and your taser, how on earth have you slipped through the cracks and been allowed to remain an armed enforcer of the law for this long? (This is rhetorical—the “she thought it was her taser” is an insulting lie.)

I am so enraged I can scarcely form a clear thought. I currently can’t speak/have gone nonverbal from the rage and an inability to manage it properly. I’ve given myself a headache from the stress. I did the thing that my executive dysfunction makes me do and waited too late to eat, and then couldn’t go get any food because everything is closed because four counties are under this arbitrary and unconstitutional curfew.

Daunte Wright was a disabled Black man and a father and he should be alive today. 50% of people killed by police are disabled. There is no excuse the police can offer or lie they can tell that makes his summary execution acceptable or justifiable.

Now back to your regularly scheduled programming

Seasonal Affective Disorder got me late this winter, but it hit just as hard. I spent several days unable to get out of bed, I was so depressed. It coincided with a major cold snap in early February, but I had been on the low-functioning end of things for a while preceding the episode. Hence, the long hiatus from blogging–I barely had the energy to get up and do my job every day for about two months.

I have gained some new blog followers during my time away, and I welcome you. In the interest of transparency, here’s what me and this page is about:

  • Me—a 30-something autistic woman from the upper Midwestern U.S. who has embraced self-diagnosis after being all but diagnosed with ASD as a child; the barrier back then being that my parents did not take me to be formally assessed after my elementary school referred me with concerns. I have also done years and years of research on my own. I also suffer from generalized anxiety, some agoraphobia (fear of crowds, not fear of leaving the house), and what has been assessed as major depressive disorder but what I suspect could actually be a combination of ADHD, ASD, and some depression symptoms.
  • Vaccines do not cause autism, and essential oils, special diets, etc. do not “cure” it. There is no need for a cure for autism, because autism is not a disease and autistic people are human beings and valid and worthy of love and respect just the way we are. Autism Speaks is a hate group. I refuse to argue any of the preceding points. I will unashamedly block anyone who wants to debate the humanity of autistic people.
  • Autistic children should be protected. Having an autistic child is not a personality trait. If you behave like a martyr—like your autistic loved one is a burden—trust that despite the fact that you may not recognize that your loved one knows you feel this way, they know you feel this way. And it’s shitty and wrong and you need to work on yourself.
  • Black, Indigenous, POC, trans, disabled, and queer, and any and all intersecting identities, matter. This one pretty much speaks for itself.

I might make another post later today, but those are the basics for now!

Warm in the wintertime

Today I was thinking to myself how grateful I am that I can afford the extra $10 or so a month on my electric bill to keep my apartment at seventy degrees in the winter. I have adequate shelter and the ability to keep it comfortable for myself. I feel so fortunate.

I was thinking about this and wondering why 70 degrees is the perfect indoor temperature for me. I am sensitive to extreme heat and extreme cold, and my mood is affected by both. But I know it’s more than that. When my dad remarried, I was newly thirteen and had been dealing with preteen angst and emotional abuse and neglect from my father for three years, since my mom and dad divorced (he won primary custody, and my mom left the country). When he remarried, the abuse and neglect of myself and my two full siblings got exponentially worse. My dad and stepmother had and have severe [but undiagnosed] anxiety disorders, and their way of handling that anxiety was to exert control over every little thing in our lives—my two siblings and I were once grounded for a week because I forgot to put a basic, cheap Bic pen back in the drawer where I found it. My stepmom’s anxiety would be so severe that it sometimes bordered on psychosis.

Another way they exerted control was over basic comforts. The temperature indoors was at sixty-two degrees from 10 p.m. until 6 p.m. the following day, when one of them got home from work. We were absolutely forbidden from ever touching the thermostat, even though we got home from school around 3:30 most days. When they arrived home, one of my parents would adjust the heat up to sixty-eight degrees. It absolutely never got warmer than that in our house, except in summer when it happened naturally.

To be clear: I understand this need for people who can’t afford the extra two degrees every month. Electric bills are high in a house of six people. The thing is: when my dad married my stepmom, we moved into the first double-income household we had ever lived in, and we moved six months after their wedding into a housing development. My stepmom made excellent money in her government job, and my dad managed an entire department in the school district—on his own, that wasn’t much money, but combined with my stepmom’s salary, they were more than comfortable. I say “they” because we were not allowed to ask for money and had to pay most school and activity fees ourselves with our $5/week allowance. We were to be grateful that they fed us and let us buy clothes once a year. My parents could easily have afforded to at least let us turn the thermostat up to sixty-eight when we got home from school. But if one of them got home and the thermostat had been adjusted…there would be hell to pay.

Even at the time, the cold was symbolic to me. It was the bare minimum, keeping us warm, the same way we were provided for. My sibs and I used to joke about keeping our future houses extra warm, just because we could. We’d be adults and have control over our bodies and homes and comfort.

My relationship with my father and stepmom improved significantly throughout my twenties, and despite no reckoning about the past, we get along very well today. As he’s gotten older, my dad has slowly realized how severe his anxiety has been his entire life. He recently offered me a small, private apology for “the effect” his anxiety had on me when we were growing up.

Anyway, sometimes it’s hard for me to love myself. Depression and PTSD and the hypersensitivity that comes with autism make that very difficult. But I’m glad I’ve found a way to be kind to myself, by keeping myself warm and comfortable in the cold winter.

Relief.

That’s the only word I can think of, sitting here the day after Joe Biden was projected to be the next president of the United States. There is an incredible amount of work to be done; Biden was not my first or second choice for the Dem nomination; a staggering seventy million still voted for fascism, after everything. I know all of this. And I’m allowed to feel relieved that we’ve scored a tiny victory over fascism. I am much, much further to the left than the Democratic party, even the progressives, and always have been. “Anarchocommunism” is the closest political movement to which I subscribe. But the idea that we have an opportunity to excise that cancerous turd in the White House and maybe start to rebuild our reputation as a credible nation fills me with relief.

Far less important things
Personally, my current project is cleaning out my car so that I can donate it and get a new (to me) vehicle. It has been extremely difficult to get myself out to clean out my car. That executive dysfunction rears its ugly head and I’m stuck thinking about what I need to do all day but never actually doing it. I did get most of the trash out, and what is left is mostly things I need to bring into the house—I’ve been using the car as a de facto storage unit and it is a habit I need to break. More than once, I’ve had strangers come to me with concern that I live in my car. It should embarrass me, but it just…doesn’t.

There is a local medical rehabilitation center that works with a lot of the physically disabled people I cared for in my former life in social services. I donated my last vehicle to them a few years ago, and got this car for free from an ex who was moving overseas. She’s a 2007, and she’s outlived her usefulness. There are dash lights on permanently. And I’ve dumped so much money into her maintenance and repair, I finally decided this summer that that was it. It’s not worth it anymore. This time, though, I think I will be donating the car to an Black mutual aid charity. I don’t have or make a great deal of money, so I am not always able to lend as much monetary support as I might like to the cause of racial justice and anti-racism. I hope this will help a family in some measure. I don’t believe in bragging about charitable acts, but since I am pretty anonymous here I am just discussing it in the hopes that it might occur to a reader the next time they have a car to get rid of.

Why don’t I just sell the car? you might wonder. Well first of all, on the most basic level, I don’t have a great grasp on nor attachment to the value of property. This isn’t altruism. It’s autism. Ha! I am never particularly attached to material things. There’s been so much transience in my life, possessions just matter very little to me. Second, I can afford to finance a (used) car for myself without trading in—truly a blessing that was only made possible by the $600/week in unemployment I received this summer after being temporarily, partially laid off.

Looking at getting a Subaru. If I can’t escape the harsh winters of the northern midwest right now, maybe I can at least drive through them when I need to!

The pre-SAD blues

Seasonal affective disorder’s acronym has always delighted me. I’ve dealt with SAD for as long as I can remember. This year, it’s been ushered in early with the arrival of snow in mid-October, like this is the 1990s or something. It already feels like December in the upper midwest. This has a pretty foul effect on my overall mood.

I start to get stressed out about SAD right about the beginning of October, because I know just how deeply depressed I will be beginning in November at the latest and lasting until March at the earliest. I don’t know if it’s the cold, the dark, the snow, or a combination. I’ve tried “therapy lights” and currently own two–they’ve done absolutely nothing, never come close to resolving any part of the issue. It makes me think that despite my loathing of the early dark, it might be less of a factor than the cold and snow.

But I get downright bleak around this time of year. I’m bracing myself for the tumble down into the darkness coming some time next month. I get very little done in the winter. The cold and crummy roads conspire with my already-dismal executive functioning and I am lucky to get up and do my work every day. Getting out of bed becomes next to impossible once the sun starts waiting until 8 a.m. to rise. I’ve been doing the Work From Home Shuffle since mid-March thanks to the pandemic, so the stress about my extremely long commute has disappeared–I’m so relieved to not have to drive tens of miles for at least the first part of winter during rush hour.

It feels like the pandemic has given me practice, though–a summer spent not being able to do much outside the house besides shop for necessities and take solo walks sounds oddly similar to the way my typical winter usually goes. I just hope I don’t hit the wall of “I can’t take this isolation anymore” smack in the middle of the winter.

I live in a drafty old building that is horribly sealed; it seems like the windows migrate further outward from their frames with every thaw. I hate to be cold. And baseboard heaters are the worst–all the mucous membrane-drying effects of a radiator, with none of the heat.

Anyway, I’ve toyed for years with the idea of moving to a warmer climate. I’ve been to both Florida and Cuba in the wintertime, and the feeling of euphoria when I stepped out of the airport into the humid air was almost overwhelming. But I don’t know how to do that–start over in a brand new place, extremely far from family. I left my hometown for “the big city,” but I had relatives there and could stay with them while I established myself. I wouldn’t even know where to begin with getting someplace warm. It’s so expensive to move and it’s such a gamble in the field I am in, because demand fluctuates so much.

I found a dead bird on the doorstep of my building on Friday. I moved it into the grass and then cried about it for half an hour. I want to blame it on emotional dysregulation due to the pandemic, but this is…a pretty normal response for me.

I’m all over the place with this post so I’m going to stop here. Love and solidarity to anybody else getting ready for the SADs.

Let your prayers go drifting into space

I was raised Roman Catholic. That is to say: we went to church every Sunday for the first four years of my life, because we could walk there. Once we moved to a rural area, we became Christmas-only Catholics. I never had a First Communion, never went to Sunday school. I was baptized Catholic, and that’s the last time I had a meaningful interaction with the Catholic church. The brilliant comedian Cameron Esposito invented the term and concept of being “ethnically Catholic,” which I find quite clever and now use to identify myself. There is a culture to Catholicism that is hard to shake, especially given the fact that my generation was largely raised by people who were raised by devout Catholics.

As a kid, the concept of religion and god was a foreign one to me. To make it make sense to myself, as a tiny kid, I decided that the idea of god and the bible were stories that grownups told themselves and each other. I still have never been able to grasp the idea that there are many, many people who believe literally in the words of the bible, believe in the idea of a single patriarchal figure literally creating the universe from nothing. It’s a level of faith I cannot achieve. I would define myself largely as an atheist, with a lowercase “a.” I’m not aggressive, I don’t debate people of faith (I think it’s rude to challenge someone on their faith OR the lack), and I don’t talk down to or think less of someone with a religious faith unless they use it as a cudgel to harm others.

With those caveats firmly in place, I have found myself wanting as I’ve grown older. Wanting to believe in something, even if it doesn’t fit a conventional model of Abrahamic or any other religion. To me, what is most “miraculous” in this life is the beauty of nature. I find it incredibly beautiful that all of this could just happen because of scientific evolutionary processes. Look outside! I feel moved by the existence of the earth and all its inhabitants as completely random more than I jive with the concept that someone specific “created” all of it.

I have become more interested in reform Judaism as it relates to a view of the world and our role in it as human beings, stewards of the earth and the human race. Something I really appreciate about the Jewish faith is the belief that we should be good to one another and do good things while we are here because it is the right thing to do–not because we will reap rewards after we die. It’s the way I have always striven to live, despite my previous complete lack of faith. It’s also the only religion I know of that asks and encourages questions, and then offers answers. Not only does it offer answers in the form of the Midrash, it doesn’t present these scholarly interpretations as absolute. It doesn’t demand unwavering, literal belief in scripture. I’m in the very early stages of researching the conversion process, and have been reading the five books of Moses over the last few months.

One of my siblings has been on a similar journey: searching for faith after being raised a skeptic. They recently made the decision to start covering their hair unless they’re in a private home with loved ones. For this sibling, homemaking is a spiritual practice. I don’t pretend to understand that, but they talk of their head covering as “always having their home with [them].” Before I learned that this sibling made this decision, I had considered it myself for a little while–though for reasons far less spiritual: I thought about covering for sensory reasons. I feel so calm and centered with a weighted blanket on me if I’m stressed out, and I have always loved the feeling of being squeezed–because of autism or because I wasn’t hugged enough as a kid, one never knows (¿por qué no las dos?). I saw a woman on TikTok who was demonstrating how she wraps her tichel, and was enthralled. Something warm, gently squeezing my head? Not having to fight with my curly hair every morning? Where do I sign up?? I should note that neither hair-covering nor this Jewish woman were the impetus for my interest in Judaism; they were purely incidental. After mulling it over and talking with my sibling (and–of course–asking them to demo their covering on my head), I’ve made the decision to try out covering my hair. Still not for religious reasons, but for sensory ones. I may love it, I may hate it. But I’m kind of grateful for this endless quarantine because it has allowed me to explore so much of myself and the world in the privacy of my home.

Sharing

Tonight I made the difficult decision to talk about my autism and feelings about it with one of my siblings. They* were supportive and said that they were glad I’d told them about it. It was a bit of a relief. I still have a sibling I haven’t and may never discuss it with–I adore them, but they can be very judgmental in a way that is reminiscent of my parents, specifically my dad, when it comes to concerns about my health and well-being.

I explained to my sibling tonight that after a lifetime of being called “weird” by both my parents and kids in school (which, as a child, to be called “weird” when what you want most is to blend in, can be very wounding), I was coming to understand that okay, maybe “weird” was the best way these people could describe the way I access and process the world. But it’s not “weird,” it’s just different. I can come to the same conclusions as others, I can function in a neurotypical world with a degree of success, but I don’t move through it and experience it in the same way. In some cases I process emotions very quickly to the “action” stage, and in others I can become stuck on an initial reaction and take forever to move on.

I know I’ve said this before, but there is so much about my past and the way I’ve experienced life that is coming into such sharp focus when viewed through the lens of ASD. I think back on reactions I’ve had to information in contrast to others in the room, and for a change I feel like I have an answer for “why the hell did I react so differently from the other people there?” I’m approaching the coming winter (ordinarily an extremely difficult time for me emotionally and mentally) with a slightly revised outlook and finding myself less dismissive of my feelings–I don’t feel as ready to accept that I’m just depressed and low-functioning for a majority of the year. (I still hate the winter, though.) It is hard sometimes to know whether I am in charge of my depression, or whether it is in charge of me–I have always attributed my executive dysfunction to depression, even when I did not feel depressed. It makes so much more sense that it would be more likely to be connected to my autism, as it’s a problem I’ve had all my life–it did not start when I became symptomatic for depression.

It’s bedtime for me. Just wanted to express some thoughts.

*None of my siblings use they/them pronouns, but I’m trying to keep my blog as anonymous (for the people in my life who haven’t consented to be named here) as possible.

Special interests, or: the shit I love

I have tried to embrace more of my autistic “special interests” more during this long quarantine, and especially lately have been making an effort to refer to them as “special interests” rather than “things I’m obsessed with.” The latter sounds, to me, like they’re things I should not care about as much as I do–and I don’t think that that’s accurate. There are things that contribute to my anxiety that I ruminate on too much–that sort of thing is more accurately an “obsession” in my eyes. This post is about stuff I really enjoy immersing myself in.

Movies. I come from a movie-loving family. Movie quotes are an official language. The two people aside from me with the most prolific memories for not only movie quotes, but the inflections with which they’re delivered, are my uncle and grandfather, both of whom I suspect are on the spectrum. I love movies considered “classics,” and will study them furiously and memorize whatever piece of trivia I can about them. Westerns have a special place in my heart, despite how problematic the genre as a whole is.

Bruce Springsteen. I admittedly have not heard every work in Springsteen’s oeuvre, but after encountering him for the first time when I was fifteen, I’ve looked on much of his music as my soul’s salvation (if you’ll excuse the Boss-esque hyperbole). I can listen to certain songs of his on repeat for hours, deconstructing the lyrics in my head, feeling the longing for a fast car and an open road especially present in his early career. I’ve seen him live three times; the last time I saw him was the year my mother died. She had wanted to come with me to see him. At this performance, he finally played mine and my mom’s favorite song. It was the first time I’d seen it live. I sobbed.

History. This is a broad category, but I could read history and historical accounts all day long. Particular areas of interest are Irish history, the American Civil War, the “American West,” 20th century Latin America, labor history, and Native (American) history and culture. One of my favorite TV programs (my god, I sound like I’m 80 years old) is Ken Burns’s documentary series The West. It’s one of those docuseries you probably watched for social studies if you went to elementary school in the ’90s–interviews with historians of all stripes, sweeping views of the western landscape, excerpts from historical diaries and accounts, all with an opening and transitional score of indigenous chanting. It doesn’t gloss over the horrors that a colonizing people wrought and continues to wreak on the first inhabitants of the land, and I appreciate that.

This is a post I’ll likely add more to later.