I think this has gone on long enough. Time for a hiatus.
I started this blog back in 2008, when I was really grappling with my autistic identity. There was so much that seemed like it needed to change, and I wanted to call that out. I wanted to shed light on what is very confusing for a lot of folks who don’t understand Autism, but want to.
So, I did that. I shared. I posted. I posited. I conjected.
And then people were mean to me. They didn’t even bother trying to understand what I was saying and where I was coming from. They were just mean-spirited bastards.
That’s not what I signed up for.
So I went underground.
And resurfaced 8 years later… early 2016, just in time for “Autism Awareness Month”. Ugh.
And I blogged some more. A lot, actually. Hundreds and hundreds of posts. It was cathartic. I thought I was “having an impact”, as they say. And it was fine.
Once again, people showed up with the intention of being mean to me. Only this time, it was people I considered friends, in that online “community” way. People I’d interacted with. Who suddenly decided I didn’t pass their purity test. And they attacked me. One of them came after me, first thing on a Monday morning. That person is a respected “thought leader” in the Autism community who’s been writing a lot and getting positive press. Some of what they say is spot-on. But still, I can’t even tell you how nasty they were to me, over something that wasn’t intentional.
And over the following months after that, even the following years, the tone and flavor of discussion about Autism has continued to be as upsetting to me now, as it was before. I really don’t see much changing outside of myself, although I’m sure there’s been progress. People with more stamina and a more pronounced sense of mission have been Very Very Busy doing Big Things. And I’m sure it’s making an impact.
But I just don’t have the energy for it, anymore. And frankly, I’d rather just be Autistic in my little corner of the world, which means I center my attention and focus on the things that matter to me most, never mind what the rest of the world wants.
I have other projects happening. I have Fascinations that light up my life. I’ve spent far too little time on my Fascinations, over the past years, as I was outwardly focused on Making The World A Better Place, by trying to foster understanding. It’s worn me out, and I’m tired of it.
I’ll leave the fighting (and in-fighting) to the people who are totally into that.
And I’ll leave this blog where it is. I won’t take it down, because I think there’s a lot of good stuff here. But the return on investment is just not great. And I need things to feed me, in return for all the passion I put into them.
Nobody can run forever on proverbial fumes. Not even someone as ideal-driven as me.
I may come back to it, in another 8 years. But don’t hold your breath. Who knows what the world will be like then, anyway?
Trigger Warning: I will seriously question the wisdom of sticking around in this world in the following post. You’ve been warned.
Oh great. Here we go. I’ve been feeling “off” for quite some time, now. Probably close to a year. My job was insanely busy, for about a year running. I was triple- and quadruple-booked in meetings, day after day after endless day, for months and months at a time, with a very rare 30-minute break every now and then.
My schedule was unreal. But that was the job. My boss’es schedule was like that. My coworkers’ schedules were like that. Everybody’s days were like that, on my team. At least we had jobs, right? And I was driving through on pure adrenaline and determination, the whole time. Just plain grit. Just buckling down and doing the job, because we were so short-staffed and I was committed to holding up my end of things.
In all honesty, I really wasn’t holding up my end of things. I was attending a lot of meetings. Constant meetings. On the phone, mind you, not in person. That was one blessing. At the same time – and all you Autistic folks out there can relate – it was on the phone, and that was about the nearest thing to hell that I could ask for.
It’s bad enough being Autistic and having to be on the phone, but I also have auditory processing issues. I’ve never been diagnosed with any condition. All the tests come back saying my ears can hear just fine. But I’ve rarely been able to hear things clearly, the first time they’re said. Someone says one word, and I hear another. And then I have to ask for clarification. I ask them to repeat themselves. It’s like standard for me. I always have to ask people to repeat themselves. I can’t imagine how annoying it is for other people to have to say shit over and over with me, till I actually get it.
So, in addition to the non-stop work and thinking and processing and dealing with neurotypicals who care only about their own position (it’s never about the job) and being denied what I consider my basic human right to reach a flow state at least once a week (is it so much to ask?), I had to do it all on the phone.
And it was brutal. I was constantly pumping myself up to get going. Constantly staying on point. Constantly being on alert. And at the same time, my partner has been declining, physically and cognitively. So usually while I’ve been on the phone arguing with offshore managers about whether a job their team screwed up was due to a change in requirements or simply a lack of understanding of the basic requirements, I’ve been taking care of my partner, who is essentially bed-ridden (she can still go to the bathroom herself and feed herself, which is a major plus). And she’s often confused, frustrated, and angry. So, I’ve been juggling Hard Conversations at work with making meals and shuttling needed items to and from the upstairs from downstairs.
Things have loosened up a bit, over the past months, since we got more help on the team, and I was able to offload a ton of meetings and tasks to another (hapless) coworker. But then we started remodeling our house, and the COVID-19 business kicked in. So, that was fun. We relocated to another place for a few months, while the house was worked on, which has been beautiful – such a lovely place to live for the time being. But managing the contractors, having a tree fall near the house (barely missed it – lucky for us), running interference with vendors who weren’t playing nice with our contractor, and making all these decisions about what needs to be put in place — and picking out stuff online and trying to get it shipped, when hardware and appliances that are supposed to show up on Monday so it can all be installed on Wednesday, suddenly won’t be delivered for another 6 weeks… well, that’s been fun.
And yeah. Running on adrenaline. While my partner calls to me from upstairs about how she needs her breakfast now, or she’s having a health crisis. Or she’s having a panic attack. Or she wants to just talk to me (why would anybody need to “just talk”? that’s puzzling). And I’m getting texted by someone about how something needs to be done, but it didn’t get done right. And oh, by the way, did you send out the check in the mail?
Pushing and pushing and just making it happen… that’s what I do. And I’ve been doing it. With surprisingly few meltdowns, I have to say.
But yeah, it wears thin.
And so have I, it seems. I’ve been feeling very lightheaded for weeks and months, now. My heart activity has been … interesting. Palpitations. Tightness. Feeling sick to my stomach and faint. Irregular heartbeat. I seldom go to sleep without my heart racing. I have to consciously slow it all down, which I can do.
And when I check my blood pressure, it’s usually low – the other day, it was 67/46. I know how to bring my BP up, so I’ve been doing my exercises to do that, but having a consistently low blood pressure (88/54 is another reading and I’m often around 95/65) gives me pause. It’s been even lower than usual. I have an enlarged heart, or so I’ve been told, so I wonder if that’s playing a role.
Okay, this is where the “female stuff” gets mentioned, so if you’re uncomfortable with it, you can scroll past the next few paragraphs. It’s not awful, but some people get squeamish, so you’ve been warned.
# Start of Female Stuff
In addition, I’ve been having some spotting and cramping, despite being post-menopausal for nearly 10 years. The spotting only happened twice over the past month. I noticed a little bit of cramping, but I didn’t think much of it. Then I noticed the spotting. Not a lot, just a little. But still. That’s not supposed to happen. And the cramps are certainly not supposed to happen. But they’ve been there. I was thinking maybe they were constipation or related to my lower back pain, but these are definitely menstrual-like cramps. I had them intensely enough and long enough, that I know what they feel like. And that’s what menstrual cramps feel like.
Now, I started menopause about 10 years “ahead of schedule”, and they love to tell you that you run a greater risk of cancer or early death, if you are menopausal earlier than what’s usual. There’s precedent for early menopause in my family, so I never worried about it that much. But of course, now I’m flashing back on those conversations with “healthcare workers”, and it’s irritating.
Also, I’ve had a cervical polyp in the past, and I believe that caused me some cramping and spotting. It was benign. Sometimes women get these little “tags” of growth on their female plumbing, and it’s a simple thing to just reach up there and snip it out. Not painful at all, and the cramping and spotting stopped, right after I had that done.
So, this could be a polyp. No big deal. Or it could be something else. I’ve just been feeling so off, for months now… I honestly can’t tell what the hell is going on with me.
#End of Female Stuff
When I say off, I mean I’ve been feeling woozy and wiped out and feeling like I’m about to fall over, day after day. Exhaustion? Maybe. I mean, life is exhausting enough for me, without all this extra stuff, and there’s been a lot of extra stuff, lately. I know how to push through. I know how to keep going. I know how to prop myself up, so I don’t fall over. I know how to do a great impression of a highly functional individual who’s got it covered.
No need to worry about me! #IGotThis
That’s how we’re supposed to be, right? In America, you’re supposed to be positive and proactive and confident and bold. You can’t have misgivings. You have to always be ON, always be Convinced That We Will Prevail, No Matter What. It’s a sin, in this country, to have reservations, to doubt, to question, to not have faith. It’s anti-American blasphemy, and you’re sternly punished, anytime you show weakness or misgiving. So, despite having a distinct lack of all of the requisite attitudes, I’ve learned how to simulate all of that. Because it keeps people off my back, and I can just go about my business and do what needs to be done.
But feeling like shit, every waking moment of the day… well, that gets old, after a while. It’s kind of my default state, and I’m used to it. But this level of shitting-feeling has been noticeably higher over the past months. And now I have spotting and cramps on top of it.
So, what do I do?
I’m insatiable, when it comes to information, so I guess I’ll reach out and talk to someone. I’ll get on the phone with a TelaDoc later this week, when I’m away from my partner — we’re moving back to our house in a week, and I’m going back for a few days to get the house ready, before we completely move back in. Then I’ll be able to speak freely without worrying that she’s listening and I’ll then need to assauge an endless, relentless borderline-panic-attack that she can’t manage herself (story of my life).
Based on that information, I’ll decide what to do from there.
But I have to admit I’m really torn about what I’ll do. The healthcare system and I are not on good terms. I’m a woman over 50, so I fit the profile of their standard-issue concept of a woman who’s just looking for attention. I’ve gotten that, tons of times, over very real concerns I had about health issues I was having – but nobody took very seriously, nobody explained well, and everyone just dismissed. They didn’t get it at all that I am both highly sensitive in some ways and not sensitive in others, so I have to have a professional opinion to help me make sense of what’s going on, so I don’t inadvertently die. I’ve been on the verge of pneumonia, as well as having an eardrum burst, because I couldn’t tell what was going on in my body, so there’s precedent.
In much larger ways, I’ve been so close to losing everything – and I mean everything – because of health issues that needed to be managed, that nobody took seriously. At all. I had to fight, tooth and nail, to find someone to help me, and then insurance wouldn’t cover it, but I didn’t care, so I nearly bankrupted myself getting help. Same story as a lot of people. And yet, here we are in 21st Century America… Why am I surprised?
But I digress.
Anyway, I’m thinking through my algorithmic process for how I’ll handle things. Of course, without the correct information, I can’t make a firm decision, but I’m doing heuristic analysis at a high level, just considering my options. I have to think it all through carefully, because I’m the sole caregiver for my partner, and she is Extremely High Risk for COVID-19, so I have to add in an extra layer of caution in Everything I Do.
How will I handle getting tests done, if they’re needed? How will I get to the hospital? How will I tell my partner?
How will I deal with the results? If they’re fine, do I just stop thinking about it, and pretend it’s not an issue? If they’re not good, do I go with invasive procedures, or do I just settle into making the most of whatever time I have left?
That whole question of whether to pursue extreme measures or not is a big concern for me. I’m not sure how worth it, it would be. For others, sure! They love me and depend on me! No shit. I’m a fucking asset to the world – no joke. I’ve turned becoming indispensable into an art and a science, and there are so many people who love me. But what’s in it for me? Everyone asks way more from me than they give back. And I seem to be surrounded by people who are ninja-level Takers, but haven’t the faintest idea how to give unconditionally with an open heart. And anyway, they’re not interested.
All anybody cares about is themself and their own corner of the world. There are some who think they care about others, and maybe they do on some level, but ultimately, everybody’s just trying to stay alive, while the world burns down around us and we do less than nothing to stop it.
All of our “leaders” are killing us. They just are. The companies that crank out all that trash of “packaging” that is now settling to the bottom of the ocean… the manufacturers who over-produce all kinds of shit we will never need and rarely use, just because they can, and because it will line their pockets… the community and government managers (I won’t say “leaders”) who refuse to put any regulations in place to protect us from those predatory manufacturers and marketers because it might impact the economy… the people in charge of police forces who just carry on as they always have, no surprises there… and the people telling the rest of us that the police forces can or will ever change, which I have no confidence can or will happen.
We have been well and truly betrayed by everyone who holds any form of power, and they show absolutely no sign of acting in the best interests of us or our planet. They are legitimately deficient in logic, reason, compassion, and conscience, and they have no accountability to anything or anyone. We wouldn’t be in this situation, if that weren’t the case. If any of them cared enough to actually act – if they cared more about principles and the survival of others – they’d take action. But they don’t. So they won’t. And here we are.
So, if I get bad news, why would I stick around? Why would I bother making myself even sicker, in hopes of prolonging the agony of being in the world that neurotypical and autistic assholes have created. Whatever your neurodiverse location on the grand spectrum, assholes are assholes, and their numbers are legion.
Why would I subject myself to the violation of the American healthcare system, which has rarely done me much good, anyway, and has ridiculed and dismissed me and my pain and discomfort time after time after time? Why would I fucking bother? If I have to leave, I might as well do it with my dignity intact, you know?
Plus, prolonging the agony of being around all this… I just don’t know. It’s too much. All of it. It’s relentless. It never stops. People are assholes. Uncompassionate, self-centered, planet-killing assholes. If they really cared at all, and they had any intention of doing what’s really right for the planet, they would walk way from all the plastic-using, manufacturing-produced, poison-infused shit that props up our modern life, and live off the land, off the grid, with zero impact. Quit driving the fucking Priuses and cars in general. Quit buying shit on Amazon that’s so wasteful and exploitive of fucking everything you can think of.
But nobody wants to do that. It wouldn’t be comfortable. It would be inconvenient. And we need our retail therapy. We need our … stuff. Yeah, you can have it all. But you have to do it differently. Very, very differently. And unless you’re 100% not impacting the planet — or other people — negatively, you’re still a problem. You’re a liability and a threat. It’s pretty binary, actually. Either you’re a problem for the planet, or you’re not. I don’t know of anyone who’s NOT. Including me.
Hell, just by typing this on my ancient laptop that’s sucking electricity, I’m a problem. I now sit at a table that was made from artificial materials and wood from some hapless tree… with a lamp that’s also sucking electricity… in a house that’s built out of all kinds of shit that’s either toxic itself or was manufactured with highly toxic processes… I’m a problem. I know that. And all my online venting is just adding to the burden I’m placing on the planet. Yay, me…
So, why stick around in this failed experiment? If I’m going to go, I might as well do it on my terms. Why deal with the medical establishment that practicesmedicine (and has yet to master it) and uses us all as test cases? I know, I know… they can deal with extreme cases, sometimes. And their extreme measures can sometimes be successful (I’ve seen the promotional ads with smiling survivors). But I’m feeling a bit like Planet Earth — all used up, abused, neglected, taken advantage of by uncaring and unfeeling narcissists. And since I can’t do the wildfire, earthquake or tsunami thing, all I can really do is determine my own fate. Kind of.
All that being said, I do think there are many other things I can do for myself to help my situation. Really take care of myself and what my body and mind need. Quit worrying about shit. Get more exercise. Eat right. Focus on what’s right in front of me. Mind my own business. Get on with it. And see what other options I have that don’t involve anything that doesn’t have anything to do with what I love and value in the world.
I don’t know exactly what’s going on with my health, and I can’t draw any conclusions till I get some more info – if I ever do.
In the meantime, I’ll just focus on what’s in front of me. I feel like crap, so what else is new?
So, I’ve been ’round the barn (and back) with the name of this blog.
It was “Aspie Under Your Radar” for a while. A long while.
Then it was … something else that I can’t remember.
Then it was “And Now for my Next Trick”.
Now it’s “I CAN Be Autistic” — as a sort of riff on the whole She Can’t Be Autistic thing that was going ’round Twitter, way back when, with all these people coming up with reasons why Autistic women “can’t be autistic”.
I don’t want to get into a shouting/pissing/bitching match with everybody who has their own opinions about how Autism manifests in women / men / enbies / queerz. Everybody can (and will) have their own opinions about how sh*t goes and manifests in people. Everybody has their own experience. I’m not here to convince anyone of anything, just speak my piece and not hold my peace about things that I really am not okay with.
Just so you know, the whole venting thing appeals less and less to me, each day. Maybe I’m just too old for that sh*t. I’ve passed the 50-year mark several years ago, and time has granted me a different perspective than what I’ve had in the past. I have more perspective, in point of fact. And a lot of the stuff that used to infuriate me just kinda amuses me now.
Elvis Costello sings “Well, I used to be disgusted. Now I’m just amused…”
I hate the rest of the song (along with most of his music, sorry if you’re a fan), but that line has come in handy tons of times, so he gets a pass.
Anyway, what’s in a name? A whole lot, actually. The name of this blog tends to set the stage for what I write about, so we’ll go with this “Yep, I’m Autistic – here’s why” theme for a while. Until I decide I’d rather do something else, of course.
That tends to happen. I’ve been around long enough to realize it’s very likely to happen again. But for the time being, I’ll just talk about my experience, and people can do what they like with it.
It’s been a few months, since I blogged here. So, I guess I’m due. I’ve been really busy on a handful of personal projects that have really taken off. Some of them have good potential to do others some good. And that’s great. Of course, it takes a very different skillset to market and sell things, versus designing and building them.
I’m in the process of looking for folks who can help me with the former — the people stuff, y’know?
If I put my mind to it, I can definitely sell. The problem is, Alexithymia gets in the way, and I literally can’t tell how I’m doing on a sale. Plus, auditory processing issues keep me from hearing clearly what people are saying to me. The whole sales process is nuanced and people-centric, so while I could apply myself and learn how to do it, I tend to stay in my little comfort zone of designing, architecting, and building tools and applications. Because I can. It’s comfortable. I do it very well.
Still, it seems like it’s time to expand my skills somewhat. And get more into sales and marketing. So, I’ve been doing a bit of that new training. It’s interesting. Confusing. But I’ll figure it out.
As usual, I digress. Meandering on a Sunday morning.
I’ve been rediscovering some old passions I used to have. Languages (not English). Reading and writing in them.
I’ve also been reaching out to meet new people online, connecting with like-minded people who are learning the same new skills I am. It’s pretty cool.
And it also gets to be a little much. I’m far more comfortable being non-verbal and coding away, building applications, testing them, retesting, tweaking, etc. I can (and do) spend hours at a time focused on just that. Being in the zone. Finding Flow. Just being able to reset my mind back to its normal state, after being bombarded by people and phone calls all week.
My job, ironically, now consists almost entirely of talking to people on the phone all day, every day. It’s the last thing I have any interest in doing. Plus, many people have thick accents, and it’s hard for me to listen and understand. So, I pretty much fake my way through it and pretend I know what’s going on. I’m not sure anyone realizes just how … “simulated” … my work performance is. But that’s what it is — a performance. And it’s paying off, since I’m probably going to get a promotion.
But geezizfukkinchrist, it’s so depleting. Yeah, I need a new job. But I’m so exhausted from just trying to maintain, who has the energy to go out and stir up something new? Plus, how will I know it’s not even worse somewhere else?
Well, I don’t need to figure that all out right now. I get my bonus at the end of March, and after that I can start thinking about other things to do with my life.
In the meantime, I’m just coding away, having fun with it, and reading non-English works by people who think very differently from the mainstream.
It’s that time again. Holidays are upon me, and the inevitable questions arise. Are we coming to Thanksgiving dinner? Are we making the trip down to states located 8 and 16 hours away from us? Will we make the drive? Are we coming to Thanksgiving dinner?
It’s so … complicated. I’m just coming off a month’s worth of travel, if you include all the preparation (which I do). Going on trips for work is a lot of effort and requires a monumental amount of energy. But then you follow that up with an 11-day trip out of the country to parts unknown, surrounded by thousands of strangers (many of whom want to interact and won’t let you get away from them without exchanging at least some words – gods help me)… and that’s just waaaay too much.
But wait – there’s more! Thanksgiving is just around the corner, metaphorically speaking. And that means even more excitement. Family. Friends. Traveling to places that aren’t friendly to queers. (That’d be my partner and me — big ole queers – and proud of it!) Houses that aren’t accessible for my partner, who’s got significant mobility issues and needs a scooter to travel distances more than 20 feet. Scents and sounds and all sorts of sensory overwhelm. And lots of people wearing perfumes because they think it smells great.
… Let me pause for a moment to get myself something to eat, because just thinking about it is driving my blood pressure up, and I’m feeling just a tad hypoglycemic …
Okay, that’s better. I got my cereal and another cup of water, and I’m good.
So, where was I? Oh, yeah… the holidays. When everything gets so frantic and amped-up that I feel like I’m under constant attack. By everything. There’s way too much color at holiday times. What is it with all the red? And sparkly things. Sheesh. You’d think we were all a bunch of magpies. Then again, some people are, so…
Probably the worst thing about it all is how demanding everyone gets. Needy. Hypersocial. With lots of unspoken rules about how you behave (or don’t), that don’t necessarily apply the rest of the year – so I can’t practice. Do I wish people Happy Holidays or Merry Christmas or Blessed Yule or Happy Kwanzaa, or what? I tend to stick with “Happy Holidays”, since it covers everybody generically. The last thing I want to be is non-inclusive and obnoxious, but people don’t make it easy. Especially folks who seem to belong to the secret club that teaches them the secret handshake from a very young age.
Sigh. I get tired, just thinking about it — and look, it’s nearly time for my afternoon nap! That’ll be welcome change. I’m still really tired from my October-November travel. So, I’m probably in no shape to be saying/blogging anything, right now, but you’re kind of stuck with me for the next few paragraphs, ha-ha!
So, back to my complaining… 😉
Actually, let me rephrase – back to my discourse. I’ve been through 52 holiday seasons, thus far. This will be my 53rd. By now, I have figured out a few things.
Stay focused. Keep my eyes on the prize – January. Like the picture above, keep the focus on where I’m going, and let the rest of the details just fade to the periphery.
Take care of myself. I’m not a turkey, so I’m under no obligation to end up “dinner” for someone else. I have a choice about what I do with my holidays, and if that means disappointing or alienating people in my family, then so be it. If they can’t be bothered to extend themselves to my partner and me, then why should we extend ourselves to them? I have to make sure to eat right, exercise regularly, keep conscious and conscientious about my habits, and just be easy with myself, as the weeks unfold.
Do what I can, and leave the rest. I have to take care of myself, as I’ve said, and I can’t be indulging every single convention, for the sake of fitting in. Yes, yes, I know what’s done, this time of year. Parties. Shopping. Gifts to out-gift all other gift-givers. Social extravaganzas. And I’m not a fan. Surely, there must be a far better way. If one doesn’t come ready-made, I’ll come up with one, myself.
Leave it. Seriously. Leave the rest of the world to its machinations and gyrations, and just settle into my own Autistic ways. I have a lot of vacation time left from this year (especially if we don’t go away for Thanksgiving), which means I’ll have time to really immerse myself in the stuff I love the most. And get some things done. That would be the most delightful and wonderful thing of all. To actually be able to complete some of the projects I’ve started. Oh, glory and joy. How fantastic would that be! A grrl can dream.
Go back to bed. I haven’t been sleeping enough. I haven’t been resting enough. It’s taking a toll.
Speaking of which… I’m gonna sign off now and wander back to bed. I just have to wait for the wash to do its final spin, then I can toss it in the dryer and head off to my dark, dark room.
And that’s about the most I can manage for the next few hours.
I’m in a modified “bull-leaping” state today. I’m getting ready for an extended trip with my partner, and she’s not doing well – physically, emotionally, or cognitively. She’s intensely anxious about the trip, where she’ll be speaking at an international conference. It’s a great opportunity, but with over 5,000 people there… yeah… it’s overwhelming.
So, there’s that dread/excitement.
And then there’s her physical health, which is not good. She doesn’t exercise. She sleeps a lot. And she spends most of her waking hours in bed looking at Facebook. She’s got mobility issues from arthritis and sheer inactivity. Muscle atrophy and all that. And she’s intensely allergic to, well, just about everything.
And then there’s the emotional piece. She’s all over the map. Cognitively, she’s been declining over the past few years, and with that comes amped-up emotions. Lots of fear. Sadness. Frustration. The whole nine yards.
So, it’s become increasingly challenging to live with her, deal with her ups and downs, and also handle all of the extra work of literally taking care of her. As the years pass, she’s less and less able to take care of herself, which I haven’t exactly helped because of my own rigidity. If she does things “wrong”, I have a tendency to flip out, and that keeps her from doing what she needs to do (even if I think it’s wrong – and, for the record, it is).
Autism has not helped us, in this respect. And as time goes by, and she’s increasingly dependent on me for so much, I feel the sting of my own Autism even more. It’s impairing, at times, this way I am. And just trying to keep up with everything – including increased business trips – really strains my patience and my endurance.
I’m a workhorse, though. I put my head down and soldier through. I make it happen. Because I can’t see any other way. And I might as well get used to this, because I’ve promised her I will never, ever put her in a home. And I won’t. People tell me I’ll reconsider that, on down the line, especially since she’s considerably older than me, and just when things are starting to fall apart for her, they’re starting to come together for me, according to mainstream standards.
But I can work around this. I can work with it. I don’t have to be flying all across the country to seek my fortune, like others expect me to. I don’t even want to do it, to be honest. I’d rather just stay home and work on my own stuff and spend time with my sweet partner.
It still gets to me, though, how limited support systems are for people like me. Those of us who have a unique constellation of qualities that make living in the world-as-it-is extremely taxing, and who have specific needs that aren’t typically addressed by the usual offerings… well, we’re kind of out of luck, in many respects. If we’re “too functional”, we get accused of just wanting attention. If we’re really impaired, we get our agency taken away and we’re treated like wards of society. If we’re on-again-off-again, we can’t really ask for help, because while we may need help one day, we may not need that the next.
It’s so frustrating. It’s maddening. Sometimes I just need help, but people’s own issues get in the way of them being able to be genuinely helpful.
Either they feel all sorts of pity for me, because I’m “impaired”.
Or they feel disdain, because I can’t do for myself.
Or they take it all in, watch closely, and then go talk to other people about me. That’s not helpful at all.
Gossip. Anxiety. Fear of perceived weakness. Total inability to treat others with dignity and respect, unless they’re just like them.
It’s worst with my family. Both sides are a problem. My family is a problem, because they love to gossip and judge and they don’t get the variable abilities thing (even though they’re so Autistic, it’s scary). My partner’s side of the family is so judgmental and they don’t treat her well. They make fun of her. They act like it’s the end of the world, if she just can’t keep up with everyone. They’re so busy going a million miles an hour – to where, I don’t know, because ultimately, they just end up back on the couch watching endlessly mind-numbing television – and if you don’t keep up!!!, well, there must be something wrong with you.
It makes us not want to be around any of them. Which is why we probably won’t make the godawful marathon trip to see them over Thanksgiving and/or Christmas.
But I digress. The first task at hand is to finish all the errands in preparation for the trip, get my partner up early enough that she has time to take care of herself, pack, and make sure we have everything we need in the van. I’ve got the battery for her power scooter charged, and that’s good to go. I really do need to develop better systems for taking care of both of us. I’ve been resisting doing that, because it feels like capitulation. But screw it. I’ve gotta come up with some reliable supports for myself and make sure I’m up to the years ahead — however many those will be.
Caretakers often have their lives cut shorter because of the stress of caretaking. But I can’t let that happen to me. Somehow, someway, there’s got to be a way to engineer this properly.
And so I’ll do that. Through logic. Reason. Perseverance. And all the faculties I have at my disposal, which are many and various.
Main thing is to get enough sleep. If that doesn’t happen, everything falls down.
But enough of that. It’s time to kick this machine into gear and motor into the fray.
This past week, I was on a business trip, and man, oh, man… straight people can be pretty extreme about their gender compliance. And they can be pretty demanding, when it comes to others’ compliance, as well.
I spent four days in a row with my workmates, who are all profoundly straight and gender-norm-conforming. And what a pain in that ass that was. Talk about masking. I mean, seriously… I kept things pretty much under wraps. It wasn’t worth tangling with their fragile sensibilities. Their gender rigidity was intense. And they were definitely not open to any sort of divergence.
The new woman who’s joined our group is friendly and motherly and a long-time engineer. She’s also extremely traditional in terms of male and female roles, and she was quite keen on “the girls” sticking together when we traveled. There were three women in our group of nine, and she was always keen on keeping the women and the men separate. She’s new. We wanted to make her feel welcome. So, we went along with it.
But it was strange not to hang out with the guys. It was definitely a different dynamic, this time. On other trips, I’ve been the only “woman” in the crowd, which has been kind of strange, because the guys always treated me like a woman… although I’ve rarely felt even remotely “female”. Erg. Please. This is definitely not the group to go all-out Queer with. They spook easily, and frankly, I need to work with them.
So, on goes the mask. And I “tone it all down” in the way I do.
People might think I’m capitulating, that I’m not being true to my whole self. Yeah. No kidding. Thing is, I have to make a living. And this job has been the best deal going for me, for pretty much the past 15 years. Maybe longer. So, I make my concessions. At least they’re not assholes, which is more than I can say for most of the other gender norm-compliant people I’ve had the great misfortune to work with in the past.
Well, whatever. It’s all a grand adventure. It just makes me more keenly aware of how queer I really am… and how much I value what freedom I can find to just be myself, as myself, in the privacy of my own home… even if I can’t get it anywhere else.
I don’t consider myself transgender. I’m not sure I consider myself non-binary, per se. I’m just gender non-compliant. Fluid. Just being me, independent of any gender norms.
Whatever specific label and territory people have marked out… I don’t belong anywhere within their boundaries, no matter how queer they may make those boundaries.
I love to plan. There, I’ve said it. Planning is probably one of my favorite things to do, and as a matter of fact, it’s also what I do for a living. Somebody out there actually pays me to plan how stuff should happen, when it should happen, and what should result from all that activity.
Fun! … Provided people actually do what I tell them to 😉
Of course, with planning comes the need for discipline. It’s easy to get waylaid and distracted by “shiny” ideas that seem so wonderful, but aren’t actually doable. It’s easy to get pulled off course and overlook things. It’s also easy to over-reach and come up with all manner of tangential activities that don’t actually help me get where I’m going.
I’m in the midst of planning new things for myself, these days. I’ve got a couple of projects that I’m pretty happy with and stoked about, and I’m planning out the steps for each. It’s a big undertaking, this master plan of mine, and there are a lot of moving parts (so to speak). So, I have to be thoughtful and deliberate about each piece of it, put it all together carefully, and not let my mind wander off into “wouldn’t it be nice? land”. I have to keep focused. I have to keep from getting sucked into the odd / various / sundry vortex that feels like fun at the time (hello… Twitter & Facebook) but ultimately takes away my most valuable resources : time and attention and energy.
Gotta keep focused. Gotta keep on track. And I have to not expend a lot of energy on things that don’t move me towards my goal, because I’ve been living too long doing other people’s bidding and not getting to fashion my life the way Iwant it to be fashioned.
Wouldn’t that be nice…
Actually, I’ve gotten some ideas for how I can remake my work-work situation into something more suited to me. I’ve been a huge fan of a certain business philosophy for over 12 years, now, and I’ve been talking it up at work, because it really explains our current situation well. It explains a lot of situations well. And I’d love to really dig into it and share more at work. Make some videos. Create some lectures. Introduce people to it and put together case studies that people can read and use in their day-to-day.
That’s another thing I need to keep focused about. On top of the things I do for myself. And it’s a way for me to be extra engaged — and develop a following — at work. Ha ha! Part of this is so hilarious. I’ve been detesting my job for quite some time. I’ll freely admit, I’ve been looking forward to leaving, almost since the day I started. It’s a miserable place for an Autist like me to work, and I’m constantly being asked to do things that are so painful and awkward for me. When the whole BAM (Big-Ass Merger) happened, it was even worse, because there was all kinds of churn and drama and insecurity and anxiety and whatnot, on both sides of the merged companies. And a lot of people didn’t behave nicely.
But something really interesting has happened, along the way. As it turns out, people really love me. Especially at the new company that’s the dominant one in the BAM. I’ve been making regular trips out there (just got back from one which was just incredibly painful and taxing and depleting in an Autistic sense, but was ever so productive in every other sense, so I can’t complain about every aspect of it). Over the past few years, I’ve built up a fair amount of “social capital” with some important people. Not people at the top, who are so busy fighting with each other that they barely notice my existence… but the people directly beneath them, who need good connections and alliances and know I can be of help and service to them.
I apparently also have a reputation for telling the truth (though always in a spirit of love and compassion with the common good in mind). So that sets me apart. And it makes people value my feedback, because I won’t sugar coat it. But I’m not mean-spirited about it, either. I just tell people what I think, based on many, many years of experience, as well as an eye to what actually makes sense, logically.
That’s a rare commodity, so people value it. And as a result, my “social capital” has increased. And as certain people seek me out, others follow suit. And before I know it, I’ve got friends and allies in all kinds of places. I’m a trusted advisor of sorts. And I have good “dirt” (okay, let’s just call it what it is — gossip), that helps people put their situation in context. I don’t trash people behind their backs. I don’t need to. Their behavior speaks for itself. I know how to be diplomatic and say things in ways that other people really get what miserable, vindictive bastards others are being… and I don’t need to say a thing negative about them, for that to all come across.
And the really hilarious thing is that I’ve felt little to no connection to this job for years. I’ve been looking forward to the prospect of getting laid off, in fact. Hoping for a severance package. Hoping to get a few extra dollars to float me till I can move on to what’s next. Because with me and my super-duper-Autistic “career path” (if you can call careening from one opportunity to another a “career path”), it’s always about what comes next.
‘Cause I can rarely stick around long enough in neurotypically slanted circumstances for more than 3-4 years (at most). The vast majority of my “gigs” have been under 2 years. Some of them under a year. Many of them only a few months. It’s easy to do that when you’re contracting, which is my preferred mode. Of course, over the past years, I’ve had to provide for an increasingly physically disabled spouse whose anxiety triggers in a massive way, every time I change jobs, and makes both our lives all that much more … interesting. So, I’ve stayed put. And it looks like I’ll need to do just that for the foreseeable future.
Okay, where was I …? Oh yeah – planning.
Anyway, I’m planning out my next steps, finding ways that I can balance my own projects with my work-work projects, keeping it all fresh and interesting along the way. I’m a bit of a folk hero / rock star at work (yep, I’ll happily own it, too). And I’m gonna ride that positive wave as long as I can. There are things I absolutely positively need to do, to fulfill myself. And there are things I absolutely positively need to do, to keep my job — and keep it interesting.
So, that’s what I’m doing today… Planning things out, making little incremental steps along the way, and actually making some progress.
I’ve been working on a set of ideas — all related, each with great potential — for over 15 years.
And finally it’s all coming together.
That’s one of the reasons I haven’t been blogging on here a whole lot. Finally… finally… things have gelled with me enough to actually take shape in a form that actually works.
I know I’m being cryptic (and I have to be, because I’m in “stealth mode” with this project), but basically, I’ve written and conceptualized a whole lot of stuff over the past 15 years that I can now actually put into action.
The ideas all work together. And they’re useful to a whole lot of people. And I have access to the technology and skill (and customers) to make this fly.
And that’s how it goes with us Autistic folks, sometimes. We’ll have all these great ideas… very detailed, thorough, grounded, practical, transcendental… and it can take us years and years to finally fit them all together into a way of being, working, thinking, living, that’s superlative. Super fantastic. Transcendental.
But it takes time with us. And we have to have the right conditions to work under. If we don’t have the time and proper conditions, it can kill off our ideas, our drive, our ability to think. Sometimes it kills us, period. However, if we’re given the right support and the right environment… well, the sky’s the limit.
Yeah… I’m not sure “support” is the word I’m looking for. It makes us sound dependent. Needy. Like we can’t do it on our own.
Look, we Autistic folks can do a vast amount of things on our own. If the world isn’t constantly trying to kill us. If it’s not dead-set on destroying us, because we’re different.
I was fortunate to grow up in an Autistic household, surrounded by Autistic friends and neighbors. It wasn’t “weird”. It was how we were. And neurotypical people were the “weird” ones. I’m lucky that way. I grew up knowing how to love my differences and let my freak flag wave wild and high. I also didn’t give a good goddamn what anybody else thought about me, my ideas, or what I did with my life. So I had that going for me, as well.
But I know an awful lot of Autistic folks get stuck growing up in the mainstream, surrounded by people who are bound and determined to make them pay dearly for being different. That’s pretty sucktastic. And as soon as I got away from my family and the area where I grew up, I ended up in that world, too. It can be awful. So, when I talk about things being sucktastic, I know whereof I speak.
Anyway, I have to get back to working on my Grand Plan (I love planning!), so I’ll cut this short.
Bottom line is, with Autistic folks, it can take us a long time to develop… ourselves, our skills, our knowledge, our expertise, our understanding of the world. But when we do… Look out. We are a force to be reckoned with.
Okay, that’s enough for today. Now, go out there and do some good in the world for yourself and others.
What a horrible summer it’s been. I don’t know what’s worse: the heat, the long daylight hours, the humidity, the constant rain, my lack of exercise, my lack of interest in doing much of anything other than my own thing, the hyper-political pointlessness at work, or my general despair about anything ever getting better.
Good gawd. I’ve been in a terrible place, on and off, for months, now. I’m surprised I’ve gotten anything done.
And yet… I have. And for good reason. I can turn my laser focus to the positives and block out all the negatives, and I can continue apace, “killing it” in a manner of speaking, although everything around me is going to shit, and nobody seems capable of stopping the downward slide.
I was just thinking about this yesterday… how just about every job I’ve ever had has sucked in a very big way. I mean, just sucked. People undermining me. Bosses working against me. Power struggles. Office politics biting me in the ass (there’s an image for you – you’re welcome). Terrible working conditions (too much ambient noise / light / distraction). Being passed over for promotions. Being shut out of important conversations. Being shut out, period, by politically connected people who have used me as a bridge to overcome their own differences (I work it out between them, and then they buddy-up and push me out of the way).
It’s all happening again. So, fine. Screw it.
The chief problem in all of this, is that I give a damn. I give a f*ck. I really do. I care about other people and how I relate to them. I try my best. But they can’t be bothered to reciprocate. Or they take advantage, because they’re weak and manipulative. And so I end up getting the proverbial short end of the stick.
I care. I get involved. I give a f*ck.
Note to self – stop doing that.
Truth to tell, most of what goes on in the day-to-day has absolutely nothing to do with me or the things that matter most to me. And I’m tired of playing along. I’m tired of the games. The bullying. The posturing. The going behind my back to maneuver around me. Yah, I’m done with that.
Everybody else who wants to squander their life force on that… be my guest. But I won’t be joining you.
Of course, that’s easy for me to say from the comfort and safety of my own home. When I’m in the thick of it, with my hyper-empathic self, it’s a whole lot more difficult to block it all out. And honestly, I worry about it all hurting my ability to do my job and keep the money coming in. I need a paycheck. I have a household to support. Yeah, The Man has me over a barrel, that’s for sure.
But I probably make it worse for myself than need be. I’m way too hard on myself. Much, much harder on myself than anybody else is. Heck, everybody else seems to think I’m close to perfect (ha ha ha, how hilarious). At least, that’s what they tell me. How little they know… Oh, how little they know…
Well, anyway, it’s Sunday. I have stuff I want to do, including driving out to the country to look at the fall colors. My partner and I are headed west with her new scooter, so she can join me on walks and sightseeing. We actually went shopping together for the first time in a long time on Friday night. She on her scooter, I walking at an actually comfortable pace. Pretty magical.
Eh, there’s to much to say to fit in one blog post. I need a walk. Need to air myself out. Time to don some outside clothes and head for the back roads.