I probably need to get some medical help, but will it even matter? Should I even bother?

Run away! Run away!

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.

Lovely.

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.

Nobody is.

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 practices medicine (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?

When have I ever not felt like crap?

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Getting past maintaining

Well, it’s been an interesting bunch of months. It’s all been a blur, to be quite honest. In fact, it’s been a lonnnnng blur, as my day job has consumed so much of my attention and wreaked havoc on my peace of mind, and about six months ago, I came to the conclusion that the line of work that I used to love so much, is no longer a welcome place for me.

It’s been overrun by wanna-be pretenders who are just in it for the money. They posture and make a good show of knowing what they ‘re doing. But they don’t. And since the People In Charge believe their con-artist act (and they appear to be cheaper than actual performers like me), there’s no chance they’re ever going to step back and be replaced by people who actually do know what they’re doing.

Yeah, that’s just how things are. And if I think it’s going to change, I’ve got another thing coming.

So, I’m letting it go. My day job is just a way to pay the bills, while I focus on my other ventures which are mine, all mine, and are a true reflection of what I do and what I’m capable of.

And that’s fine. Because I really need to do my own thing in ways that actually make sense for me. I need to invent. I need to build. I need to innovate… and do it with sound principles that actually work, rather than just going with flashy bells and whistles that don’t actually do the job.

I’ve got a ton of great skills from over 20 years of doing what I do, and I trust my judgment implicitly in this regard. So there.

Which means I get to just concentrate on what I want to do, how I want to do it, and what good it will do for the world. And I get to do it at my own pace, in my own way, and based on logic, rather than flash and glitz.

Which is why I really haven’t been around this blog very much. I’m building out technology that makes sense to me. I’m coming up with solutions to common problems, and I’m developing stuff in ways that I think they should be developed, rather than what’s considered hot and nifty by the prevailing sensibilities (if you can call them that).

I get to be logical. I don’t have to follow the herd. I can actually think creatively and practically. I can be pragmatic, and nobody’s going to penalize me for it. I can learn and study and apply what I’ve learned in amazing ways. I can see the results of my work right in front of me — right there, right now, right as rain (as they say).

And if I’m wrong about something, my computer will tell me that. The code will fail. The application will hiccup — or barf. Then I’ll go back and try again. And keep going until I get it right. Sometimes it takes me days and weeks and months to solve a problem. But if I still with it, I solve it. I see the solution right there.  Right now. Right as rain (as they say). And I move on to the next thing.

And this gets me past just maintaining. It gets me past the old way of just slogging through the day-to-day, hoping and praying for a break. Everything has been so awful for such a long time at work. I haven’t wanted to dwell on it, because if there’s nothing to be done, there’s no reason for me to wail and gnash my teeth about it. That’s just not a great use of time. I’ve downplayed how wretched my work situation is, choosing to not even mention so much to my partner or others. It would totally alarm people to know how desperate and despairing I’ve been over the past three years — especially the past two years — so why go into it? I’ve just needed to endure. Just get through it, and trust that something will change, if I keep working diligently behind the scenes.

A lot of the stuff I’ve done in the off hours has been to get some relief from the awfulness of before. I just needed a break. So, I really plunged into a lot of special topics and areas of intense focus. The whole reason for doing them was to relieve my pain, not create something that would elevate me. It was all about maintaining. Keeping my sanity in the midst of the mediocrity and madness (and I’m literally talking about madness, here, not a euphemism or hyperbole — it really has been mad, in the sense of being severely mentally ill, delusional, etc.). I’m not sure which is worse — mediocrity or madness. On any given day, it’s a toss-up.

That’s how it’s been before, anyway.

But now I don’t need a break from my day job anymore. I now have so much else in my life that’s actually mine, that nobody can take from me. I guess pursuing all my projects is a little like having kids — they’re my creations that I can tend and “raise”, and they become something other, something different… changing me in the process, as well. Obviously, they’re not exactly like having kids, as I’ve been reminded by flesh-and-blood mothers who resented that I’d ever compare myself to them. Hm. OK. Whatevs.

I do feel very strongly connected to all my applications, however. After all, they’re literally keeping me alive in some very important ways. They keep my mind alive. They restore my spirit. They bring me back to a place of flow and insight. They’re vital to my very survival. And I’m not exaggerating.

My partner was asking me the other day, why I’m so consumed by my coding. I told her (in so many words), “Because it’s actually logical. I spend all day, every work day, being told that things can’t be done (mainly because the people doing the work don’t have the skill or vision to do it), and it’s maddening. But when I do my own work, I actually see something take shape. And I prove to myself that, yes, that can be done. For real. At work, I have no control over what others do. But in my own coding, I can influence what happens. I actually get to decide what happens. And I get to decide for the right reasons, not because of some lame-ass political motivation.”

I think she understood. Whether she does or not, is immaterial. She likes to read books, and she spends many long hours in bed reading (which isn’t all that healthy, to tell the truth). As for me, I’m up early, every day, thinking about my coding. And my “escape” is actually an act of creating something new for the world, making things, bringing stuff into existence that never existed before.

With that being said, it’s time to get back to work and code some more. I have my work cut out for me. And it’s good. I’m not just maintaining anymore… hanging on for dear life, as the field of work I love is overrun by incompetence. I’m doing my own thing, and that’s pretty cool.

Now that the dust is settling

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.

#Autistic preparation for the weeks to come

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.

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.

Which is fine.

Perfectly fine.

Am I going to be able to handle this? Do I have a choice?

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.

People. Hrmph.

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.

Occupying that space between…

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.

Maybe I’m just boundless. Yeah… I’m boundless.

When it all comes together… eventually

Well, that only took 15 years…

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.

The beginning of suffering is the giving of f*cks

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.

Later, all…

Hello again

Well, it’s been an interesting three months. The project from hell (…Hell, I tell you) just about killed me. My partner’s health has been declining. And for some reason, this summer just took a lot out of me. I wasn’t expecting that. I had a vegetable garden that I was tending, early in the summer. It got off to a great start. Then it started to rain. And it got hot. And work was awful. All-consumingly awful. Non-stop. No sooner did one thing get sorted out, than something else awful happened.

As though people had nothing better to do than make everyone around them miserable.

Huh.

Well, anyway, we finally launched that pitiful excuse of a project… to the intense wailing and gnashing of teeth of just about all our users. Apparently, nobody came up with a comprehensive communication plan. One day, people were able to use the website. The next, they weren’t. It would be funny if people’s lives didn’t actually depend on it, but the do.

And it wasn’t funny.

Of course, much of this could have been avoided if people had just paid heed to what a whole bunch of subject matter experts were saying. But no. The brand new owners of their new toy (our website, which got aquired a year ago)… well, they wanted to do things their way.

So, I did what any self-preserving, sanity-defending person would do.

I went on vacation for a week. Checked out. Didn’t look at answer any email (I couldn’t help looking, just a few times).

I walked around on the beach. I got a tan. I ate good meals. I made fires on the beach.

So there.

Now I’m back. I’m doing a lot of programming, these days. Working on some projects. Regaining my interests in areas that fell by the wayside, over the past 10-15 years, when my life seriously went to sh*t. Getting myself back.

We’ll see how this goes…

Trading one type of conformity for another? Notes on not belonging anywhere.

Whatever road I choose seems to lead me nowhere.

Try as I might, I just can’t seem to fit into any type of community. I fit into all of them, to some extent. Enough to make others feel like I belong.

I mask and blend extremely well, after all. It’s one of the advantages of being Autistic — learning how to survive, even thrive, in all sorts of conditions. Being able to play my part, support others, be a productive participant whose contributions are valued.

I’m a member of the community gardens in my town. I’m also on one of the town boards. I’m a valued contributor at work, and people seek out my input. I’m loved by my family. I’m also a member of an Autism support group for folks over 50 years of age, and they miss me when I can’t attend.

All this is great. For them.

But I never seem to fit well enough to be truly comfortable myself.

This is especially true of the whole new gender / sexuality scene. There are so many “new” words for different ways to be, I can’t even keep up. And while I can relate to a lot of them, I don’t find myself neatly fitting into any one catgory. Ace. Aro. Demi. Pan. Enby. Queer. Gender Fluid. I probably fit into any or all of them, at some point during my life — or day — but nothing ever “sticks” for me very long.

And I’m sure there are plenty of other definitions and categories that I’d fit into, here and there, as well.

But nothing really fits me 100%. Even if it seems to, it rapidly changes. And then I don’t fit anywhere.

Again.

That’s one of the reasons (I think) that I haven’t been blogging that much here, lately. The whole Autism landscape feels like such a minefield, and anything anyone says can be weaponized against them — or someone else. Even honest mistakes or lack of information get lobbed back at people like they’re deliberate attempts to harm others. Maybe they are, maybe they aren’t. Or (given what I know about human nature) they’re a combination of both. There’s never an easy answer.

But that seems to be what so many people are looking for, these days.

Easy answers. Clear delineations. Black-and-white categories to define who’s in, who’s out, who belongs, who doesn’t, and so forth.

A lot of that seems to be coming from the younger generation(s), it seems. Maybe I’m wrong (it’s been known to happen), but the pattern I see is folks who are young enough to be my children doing their best to make sense of the world with new categories, definitions, re-definitions, and unique identities. And I don’t fit into any of them. I understand the desire to do that. I did it, myself, when I was in my 20s. But I just don’t have the spare energy for that, these days… especially considering what how impermanent my “final say” assertions about the world turned out to be.

Plus, I have a lot on my proverbial plate. I’ve been working insane hours. Not getting enough sleep. Keeping my garden going. Driving my partner to and from her events. And trying to keep my own projects going. There’s so much happening in my life, I just don’t have the resources to keep up with all the new ways of thinking about people.

Or of thinking about myself.

Back about 20 years ago, I lived as a man for some 4.5 years. I put my female body into male clothes, a male role, a masculine way of moving through the world. I was pretty serious about transitioning, at that time. And then I ran into the buzz-saw of Community Requirements, and the types of behavior and acceptable conduct felt even more restrictive to me than outside the circle I was hoping to join. Nasty comments on online forums. Getting sized up and dismissed.

I didn’t feel free. I felt even more restricted than I had before. And I realized that I didn’t belong there, either.

Everybody’s got their “stuff”, of course. And who knows why people interacted with me the way they did. 20 years ago, the trans community was going through a lot of changes, growing pains, just getting started. And not everybody was sweetness and light.

Rather than getting into it and stirring things up, I dropped the whole transition thing. There was really no support for me, personally, and the costs outweighed the benefits. Everybody’s different, and everybody has their reasons. There are plenty of people who see more benefit to shifting their place in life, and I’m glad they have a place to go to.

But for me, there doesn’t seem to be any one place where I’m 100% comfortable. Except with a very few friends, and also in my own company.

I guess that points to me being Autistic. Of course it does. And of course, it’s not a deficit in and of itself. If anything, it’s a strength. Because the rest of the world is pretty much  a big old mess. And even the parts that aren’t a mess can be so distressing to interact with, that it’s only logical that I (and others like me) would pull away and not want to have anything to do with it.

That goes for Autistic corners of the world, as well. Those of us who are hyposensitive can be painful for those of us who are hypersensitive. I should know. I was raised by a hyposensitive mother, whose interactions with me were the equivalent of her beating me on a daily basis. She didn’t realize it. It wasn’t her fault that she couldn’t sense where her body was in space, or she had to over-contact every single thing and person in her life to experience them. It’s not her fault, and I quit blaming her, years ago.

But that doesn’t change the fact of the effect of her behavior on me. I’m still stuck with the enduring trauma. I’m still convinced, deep down inside, that I’m a bad person who deserves to be punished, because I felt “punished” every single day of my life in her house, and I’d been taught that you only get punished if you’ve done something wrong, or if you’re a bad person. No matter how unaware she was, I’m still tasked with recovering from it, every living day of my life.

Then again, those of us who are hypersensitive can be pretty intolerable for those of us who are hyposensitive. We’re picky, we’re persnickety. We’re so demanding. We need a lot, to function, to feel at home (if we do at all), to feel safe… if even for a moment. I pitch fits. I freak out. I snap. I meltdown. I collapse. And that’s not helpful for anyone, especially me. But that’s where I’ve landed. That’s how I am. And it’s my job to figure out how to live with it in ways that don’t harm everyone around me. I harmed a lot of people around me, for many, many years. And I’m tired of it. I’ve devoted much of the past decade to learning how to not do that, anymore.

But no matter how I try, I’m not sure I’ll ever really get to a place where I really feel comfortable. Anywhere. It probably has a lot to do with me being as sensitive as I am, which makes it hard for me to fit in over the long term. I’m most comfortable by myself, and that’s okay. And at this point in my life, I’m getting used to the idea of piecing together community where I can get it — and not relying on any one group or any one category to provide a safe haven or a sense of identity for me.

In some ways, it feels dangerous. On the other hand, it feels safer. More realistic. None of the labels fit me completely. None of the identities feel like they’re a good match for all of me. I almost envy people who feel like they do fit into a category, like they do belong in a certain group.

Almost.

But not quite.

Well, it’s Monday morning. I have to get to work. I’m officially out of time, for today, for thinking about this stuff. Maybe later, when I’ve caught up on some sleep.