Microstory 2225: All Sectors of All Fields

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Nick wrote the social media post that he just sent out. And I do mean that. He was able to stay in control of his arm movements enough to type it out on the computer, and even click the submit button. I’m so proud of him. He tried to write this one up himself too, but it proved to be too difficult, and we’re low on time. We ended up staying in the hospital far longer than we wanted, and I’m not a happy mama bird. I told them that we had a maximum time of five hours, and the researchers who are studying his condition did not adhere to that. I mean, it’s not like they locked him up in the lab, chained him to the table, and started poking him with needles while they laughed maniacally. They just kept wanting to conduct more tests, and asking him questions. There was always just one more thing to try. There was also a lot of hurrying up and waiting. This happens because people will typically not take that into account when estimating the amount of time they need to finish working on something. This is true for most people in all sectors of all fields. Anyway, I don’t want to complain too much, but I am going to seek legal counsel for Nick. We need to get the agreement in writing, so this sort of thing doesn’t happen again. Until then, he’s not going back to that facility unless it’s a medical emergency, or some other issue that I can’t handle myself. I’m sure we’ll get it all worked out. I know that no one made this happen on purpose. But he’s very tired right now, and I have to get his dinner prepared so he can get some rest. Until next week!

Microstory 2224: Done With My Remains

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I’m back at the hospital. We thought that this was going to be a weekly thing, but it appears that I’m going to have to incorporate it into my daily schedule. It’s a lot of work for Kelly, so I’m giving her a raise. It’s not like I can’t afford it. I’ll be dead soon, and any money left over is going to go to charity since I have literally no next of kin on Earth. Researchers want to poke and prod me as much as they can before I kick the bucket. I have always been a supporter of science, so if I have to suffer for a few weeks to help the world better understand how prions work, then I’m gonna do it with no complaints. I do have a line, though. I’ll still be living at home. That is nonnegotiable. I recognize and appreciate the importance of this research. Nonetheless, I’m entitled to die with at least a little bit of dignity, and some approximation of comfort. Kelly and I agree to go into the facility once a day for a minimum of two hours, but a maximum of five hours. Anything beyond that is too much for me to handle. However, like I said, I’ll be dead soon, and when that happens, they can do whatever they want with my body for however long. The hospital will be in charge of however that works. But it has nothing to do with me; I don’t need anything special to be done with my remains. I know, this has all been so depressing. Maybe I’ll try to write something a bit lighter tomorrow. Maybe.

Microstory 2223: Goodbye

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People are evidently fascinated by my story, and have a morbid curiosity for my terrible prognosis. They want to know what it’s like, living with this day to day, and knowing that my life will be over soon. Well, it’s actually kind of boring. Since I don’t have the freedom to move around where I want to, and everything I do need to accomplish has to be planned out in advance, I mostly just repeat the same routine every day. I wake up at 07:15. For now, I can brush my teeth on my own, because my arm tremors don’t prevent me from doing it, especially not so early in the morning. It gets to be problematic later in the day, when my arm starts to kind of flail about more unpredictably. I guess the prions need time to wake up too. Anyway, after I take my first round of medicine, Kelly helps me with some physical therapy exercises for about an hour. After that, I need a break, so she plants me in front of the TV for maybe a couple of hours. At that point, I’m getting hungry, so she makes me something simple for lunch, usually a sandwich or a wrap, along with fruit and vegetables. I’ve never eaten so healthily, but that was always my problem, having to be inconvenienced by preparing the food myself. I’ve never cared that much about the taste or quality, it was always just easier eating something prepackaged, or delivered right to my door. That’s probably the best thing about having an assistant, be it a medical professional, or no. Then after lunch, Kelly takes me for a walk in the wheelchair, or if she’s being a big meany, the walker. I’m joking, I know that it’s good for me to stay active and mobile. There will come a day when even sitting in a wheelchair will feel like too much. The walk takes as long as I can handle it, because I’ve always needed a nap right after it, and in some cases, during. She usually has to wake me up to take more pills, and then I just stay awake for more TV, more physical therapy, dinner, more pills, and more recently, writing these posts. Finally, it’s time for bed. That’s pretty much it. Exciting, I know. It’s so interesting, in fact, I think I’ll start a vlog about it, so a company can offer to sponsor me, then get mad when things don’t work out (probably because I’ll be dead). So. You’ve all been writing me letters, and that’s a very lovely thought, but I’m not going to tell you where I live, I do not have a publicist, because it’s a waste of money at this point, and the jail shouldn’t be worrying about them. They have enough on their plate. Here’s the deal, if you send more letters addressed to me, they have been instructed to literally throw them away. They’re not even gonna open them. So please, stop killing trees for no reason. If you want to say something to me, you can send a quick message below, or catch me on social. I still might not be able to read them, though, because it’s getting harder and harder for me to keep my eyes open in front of screens. And my lifecare assistant isn’t getting paid for all that extra stuff. Thank you for understanding. Goodbye.

Microstory 2147: That I Hate You

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I’ve lived here for—how long have I lived here for—I don’t remember, and I don’t want to look it up. As usual, I didn’t bother meeting my neighbors. This isn’t ever some kind of intentional effort on my part, where I avoid them like the plague. It’s not that I think that we won’t get along, though let’s be fair, we probably won’t. It’s just that I don’t give it much thought. The first day when I move into a new place, I’m busy doing that. The second day is about figuring out how my daily behavior is going to change. The next few days are about implementing those changes, seeing what works, and rethinking accordingly. After that, I’ve established a routine, and while I can alter it as necessary, I pretty much stick to what I know until it becomes too inconvenient, and I have to come up with new solutions. Other people don’t factor into it unless they were a part of it before, such as my family back on my homeworld. Meeting people is not something that I’ve ever been interested in. I’ve tried to ask a number of neurotypicals what the point of getting to know new friends is. Not one of them has been able to explain why exactly they like it. They act like it’s a biological imperative, like eating, or propagating the species. And it’s true to some degree. Evolution favors life-preserving traits, and humans have survived through tribal collaboration. But that’s not really what that is, is it? The only tribe that I need is currently around five billion strong. If I need a coat, I know where to go. If I need help getting a door open because my hands are full, someone nearby will likely oblige. I wouldn’t expect to have to foster some strong relationship with that person. In fact, if true connection is something that they required before helping in such a small way, we would all probably consider them not that great of a person. I’m not going to become friends with people just so they’ll open the door for me, because I don’t want to be associated with someone who won’t open the door for a stranger. My point is that whatever joy you experience by getting to know others is not inherent to your survival, which means that it is not necessarily universal. To be sure, it’s not even true for me, and I’m sure there are plenty of others. It doesn’t make us misanthropic hermits either. I think it’s perfectly reasonable for a beekeeper to only want to be friends with other beekeepers, for instance. Of course, this kind of mentality has the potential to lead to prejudice and otherism, but it doesn’t have to. I’m not a beekeeper, I’m just me. My interests don’t align well with others. For one, the things that I used to love don’t exist in this universe, such as Stargate. But also, loving Stargate has never been my entire identity, and I didn’t find myself enjoying being in the company of other fans, for reasons that I won’t get into. I think that I just don’t want to be around people who are like me any more than I want to be around people who aren’t like me. Again, it’s not that I hate you; it’s just that that’s not how I choose to live in the world. Anyway, my neighbor suddenly invited me to dinner tonight, so we’ll see how that goes.

Microstory 1826: Shared Birthday

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It’s not my birthday today, but it’s the day that I used to use for it. My best friend, who I grew up with, was born exactly six months after me, to the hour. Obviously, we used to have our own separate celebrations, but we liked to do everything together, so we figured we might as well include birthday parties in that. We split the difference, and always observed it halfway between mine and hers. Our families didn’t really understand why we would want this, and it took them a while to recall the occasion, since the date wasn’t significant for any of them, but they eventually got on board, and it became a lovely tradition. As we got older, we did the usual thing of distancing ourselves from our families, and exerting our independence, but we never grew apart from each other, and we never stopped these middle birthdays. She died years ago, not too long after our last ever joint party. It was so sudden, but not an accident. Her heart just stopped beating. I think her parents know more about it than they wanted to tell me, but I don’t think there was anything anyone could have done to stop it. I was devastated, and depressed, and I didn’t know what I was going to do with myself. Who was I without her? We would always go on group dates, and we took care of each other, and we had no secrets. I just sort of went on autopilot after that, letting my routines take me through life, which just made it worse, because so many of those routines involved her. I realized after that how much I loved her, and that I didn’t really need anyone else to be happy. Those dates were pointless. Rather, they weren’t, but we were really just dating each other. We were in love, at least in every sense that mattered. Sex was so unimportant to both of us. We probably would have admitted this much about ourselves, and stopped trying to find partners in others. Now we’ll never know.

A few months after it happened, her real birthday rolled around. I didn’t realize it until the end of the day. I was sitting on my couch, watching whatever happened to be on TV, when the weather came on. They showed us the date, and I realized its significance. A normal person would know exactly what day it was, but I had all but missed it. It’s like she died all over again, I cried for hours. Thin walls line my apartment, I know my neighbors heard, but everyone knew what was going on, so they didn’t say a word. The next day, my neighbor to the left invited me over for dinner, and though he still didn’t say anything, I know it was because he didn’t want me to have to be alone. It was nice. We started to do it every week, making it a new tradition. I should have seen it all along, but I didn’t notice what was really going on until my own real birthday occurred. Again, I didn’t realize right away what day it was, because the day was so meaningless. But that neighbor wanted to take me out, and do something special. The way he looked at me that night, it was the same way he always looked at me, but I was seeing it in a new light. It was love. He was in love with me, and I was in love with him. We had been dating for the last few months, and I didn’t even know it. I felt like such an idiot. How many times did I act like a bad girlfriend because I wasn’t aware that I was one. I decided to be honest with him. I’ll always remember his smile. He wasn’t the least bit surprised at how dense I was being, and he didn’t hold it against me. We just kind of started over from there, with both of us on the same page. We have been married for thirty years. And now I’m dying, and it’s not my birthday, but it’s the day that I used to use for it.

Microstory 997: Flexibility

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When I was a child, I had certain routines that I would perform in order to get things done. I would have  a routine for getting up in the morning, and getting ready for school. I would have a routine for learning in school, one for coming home, and one for getting ready for bed. As I grew up, my routines changed, because they had to. I had different classes, with teachers who had different expectations, and I had a different schedule. I didn’t much think about how much my life was changing over the years, because it happened gradually. My family moved around a lot, and even when we were in the same house, the school district kept rezoning, so I was still moving all over the place. Thank God for all of that, because I would be an absolute mess without this training. One thing that autistic people like me often struggle with is change. We don’t like someone introducing a complication in our routines, because we haven’t had proper time to prepare for them. They must be tested, for efficiency and comfort. You can’t just spring something new on us and expect things to go smoothly. Routines are designed to be effortless, so they can alleviate stress, and allow us to focus on what’s important. If you force us to rethink something, that stress goes back up, because now we’re focusing energy on something we thought was fine as is. I’m not saying other people don’t have stress, but we have more, because the smallest thing can feel incredibly overwhelming. Though I wouldn’t recommend it for everyone, I’m ultimately glad I wasn’t diagnosed until I was an adult, because if my family had fully understood what I was going through, they would have worked hard at protecting me. They would have walked on eggshells, and tailored my environment, and that is not what I really needed, even if I would have thought so back then. It was difficult for them, dealing with me, having to figure out how to communicate with me so that I wouldn’t freak out about something they perceived to be trivial. It was difficult for me too, as it took years to learn things most people puzzle out on their own, and flexibility was never my strong suit. It was simple to me; when you say we’re leaving for church at 9:30, then I will be ready at 9:30; not 9:25. As hard as it was for us, though, I think it made us stronger people. At least, I know that’s what it did for me.

One of my biggest challenges was acknowledging the fact that no one ever says what they mean. Ever. It’s always attached to a lie, or an embellishment, or an ambiguity, or imprecision. Sometimes it’s on purpose, and sometimes it’s accidental, but nothing in this world is at face value, except for playing cards. I think I’ve brought this up, but I’m still coming across articles about very successful people who are trying to reveal the secret to their success. Do this before bed, and sleep this long, and sing your to-do list underwater, and write yourself a million dollar check, then burn it in effigy. Setting aside the fact that no secret trick can work for everybody, or even that many other people, the problem with the premise is that it’s all about meticulousness. You have to measure out your life perfectly, and do it in the same way across some arbitrary temporal pattern. So many people tell me I should write in the same place, at the same time, under the same conditions, every single day, like I’m on birth control, or something. That’s the exact opposite of what you should do. The real trick is flexibility. The freedom to accept where you are, and what you have at the moment, is so much less stressful than requiring your environment to be just so. I still have loads of stress, but I would have so much more if I didn’t train myself quite deliberately to tolerate and appreciate the inconveniences; both big and small. People spend a lot of money on making their lives easier, which is fine, to an extent. Likewise, to an extent, it’s a lot cheaper to simply adapt yourself to the complexity. When it stops bothering you that the barista keeps giving you two sugars, instead of one, you can move on with your life, and just drink a sweeter coffee in the morning. I am not the poster child for flexibility, but I am a huge proponent of it, because I know the problems that rigidity causes, better than most. Change is good. Complications are good. The biggest favor you can do for yourself is to take every problem as an opportunity to learn rather than trying to find a workaround that really just adds more work anyway.