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

Run away! Run away!
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?

Yet another change of blog title – it’s an identity thing ;)

name tags with pen on tableSo, 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”.

Sigh.

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.

Peopling – It’s (all) a learned thing

turkeysThere’s a lot going on with me, these days.

I’m in the process of looking for another job. Ideally, I’ll find a recurring contract situation that pays really good money and is low-commitment, which lets me bail on the 9-5 every 3-6 months or so, then get back in the swing of things (if I need to).

I’m also working on a couple of other businesses at the same time. They’re mine. One of them has been many years in the making. The other is about a year old. The other (which actually has the most $$$ potential for each individual transaction), I just started a few months ago, and it’s going pretty well.

Meanwhile, my partner is not doing well, cognitively, emotionally, and physically. No matter how supportive I am, she continuously makes decisions that erode her well-being. It’s complicated. Long story short, it’s not fun watching the love of your life decline before your very eyes.

Anyway, one area where I need to make some real progress is in how I deal with people. I notice, more and more, that I’m really getting more autistic as time passes. I think it has to do with how much more sensitive I keep getting. It’s like, every year I get more “cued-in” to what’s going on around me, and my sensory issues keep getting more heightened, as well as more intrusive.

So I need to acquire some new skills – particularly with negotiation.

Here’s the thing: I can be terrible with figuring people out. I mean, seriously. Some days, I can’t tell whether they love me or hate me, I can’t tell if they’re listening to me or ignoring me. I can’t tell whether I’m doing a great job in the interaction, or they’re just trying to get away from me.

Here’s the other thing:  Some days I can be 100% ON, when it comes to interacting with people. They respond to me, they love me, they feel a kinship with me.

But even when I’m ON, I have a really hard time reading the situation and knowing where to go next.

My Solution? To train myself in the appropriate process to interact with people and negotiate any human interaction.

If you think about it, pretty much every human interaction is a negotiation. People want things. They want things from me, they want things from you, they want things for themselves. And their interactions are geared to get those needs met.

My partner is a classic case of that. One of the reasons she’s so difficult to support, is that she gets very histrionic about her challenges and she “amps them up” for effect, to prompt pity and help from people around her… so they’ll help her do things that she really needs to do for herself.

In front of other people, she makes a big show of how hard it is for her to do things. There’s much groaning and moaning and displays of difficulty. And everyone runs to her assistance to help her do things she needs to keep doing for herself, in order to stay strong and healthy.

But when nobody is watching, she does those same things for herself. She gets herself out of bed. She makes her coffee and toast. She moves around the house. She takes care of things. It’s completely different from when someone is nearby. Then, she appears to be almost completely disabled.

That’s an extreme example, of course. Not everyone is as histrionic as she is, nor do they manipulate others to that extent (and to their own detriment). But you know what I mean. Probably. Everybody wants something from interactions. Especially neurotypicals.

So, I need to get educated about how to manage that. Because my life isn’t getting any easier, and I need extra skills to A) negotiate a job change, B) expand my existing businesses, and C) really work out how to just deal with people effectively.

I need a script. I need a road map. And I’ve been watching YouTube videos about how to put together that road map. As artificial as it sounds, I keep hearing that you can script out your interactions and follow a process to lead people down a certain path of interaction. It sounds a little “Pied Piper”-ish, but apparently, people like to follow others’ leads, so I need to put myself in a leadership position when I deal with others.

It sounds a little tiring. But I’ve actually gotten in the habit of doing that, since just “winging it” with other people is so fraught for me, and it’s way too anxiety-producing. What I do is immediately take the lead in pretty much all my interactions – I talk to people first, I comment on things, I put ideas out there, I step into the void of silence and uncertainty between us, and I give them something to react to. And then I keep leading them into that void, giving them the chance to respond safely. They don’t have to come up with anything novel, themselves. They just have to react to what I’ve put out there.

And it works. For us all.

My technique is a little clunky, however, so I need to fine-tune it. That’s what I’m doing, watching videos about establishing rapport, negotiation, sales and prospecting processes… basically learning what I need, to be more comfortable in my own skin. I’m actually finding sales training videos to be very helpful, because they are about establishing rapport and bringing people over to your side.

So, that’s what I’m doing. Training myself to do the people thing. I’ve learned to do so many other things in my life, that are extremely challenging and daunting for most people. With the proper training, I should be able to learn this peopleing stuff, too.

Ha ha! I’m going to quit, anyway! :D :D :D

cowboy herding cattle in dustI’ve been wrestling with the odious task of putting together a PowerPoint presentation for my boss – who’s covering for me at a workshop next week, while I’m at a family reunion. Personally, I think I’d rather go to the dreary slog of daylong meetings of people droning on, rather than dealing with my family for four days straight… but that’s now how things turned out, this time.

I guess, instead of sitting at a table, surreptitiously checking my social media 😉  while I feign “engagement”, I’ll have to pay attention to real live people with whom I (ever so reluctantly) grew up.

That whole reunion thing is a hot mess I just can’t even get into, right now.

But back to the PPT (as we so fondly call those instruments of corporate torture)…

I’ve been sweating over it for days, because it’s going to be presented at some Highly Momentous Planning Session that you’d think was swaying the future of the known-and-mapped world, the way people are going on about it. Basically, the workshop is pretty important. But that’s only because it’s the only way they can get all the chronically distracted people to pay attention to the same thing at the same time, so they can audibly commit to doing the jobs they’re supposed to do, anyway.

For this, I need to fly halfway across the country?! If people would just do their jobs, we’d be that much better off.

But I’m being unrealistic. For them, anyway.

And this Momentous Occasion will depend on me delivering Just The Right Amount Of Information, orienting everyone to the present and future state of the technology we’re in the process of delivering (late). Pressure, pressure. Meetings with my boss. And my boss’es boss. And reviews by the boss’es boss’es VP boss. High drama, indeed. So, it has to be right. And I’ve been sweating it.

But every now and then, I have to deliberately remind myself — I’m leaving this job at my first opportunity, so the pressure is off. When I go, the waters will close behind me, like the Red Sea enveloping the Egyptians behind the fleeing Israelites. And I shall be free to move about the desert as I choose. 🙂

Yeah, I can’t wear myself out with worry over things like Getting Everything Right. It’s in my autistic nature to fret over details like that. But honestly, all I need to do in the neurotypical world is come up with something halfway passable, and then act the part of someone who is extremely self-possessed and commanding. NT people love that. They really do. It doesn’t matter – at all – if there’s any substance to it. All that matters is the feeling of confidence and surety I give them, when I talk. It’s taken me years and years and years to get that substance usually takes a back seat to form with non-autistic people. And it’s taken me even longer to come to terms with it.

But hey, that’s how they roll, and as long as I can hack their behavior and simulate something that works for them, that’s cool. We’re cool. And that’s how I get ahead. I am often (by definition) an impostor in the process, but then, so are they. And if they don’t care, I can’t get worked up over it.

Whatever works.

Plus… ha ha! Even if my PPT is a dismal failure (which it won’t be, because I know how to REPRESENT!!! when I present to those folks)… I’m still leaving at my first opportunity.

And no, the proverbial door will not hit me on the way out. They’ll be eating my dust.

Now that the dust is settling

red balls inside chrome boxesIt’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

road leading through colorful woods

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?

Minoan bull leaping - three humans jumping over a charging bull

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…

child standing on a hill looking towards sunset with arms outstretchedThis 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.

Planning for what’s next

maze with walls and grass on the ground

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 I want 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.

Woot.

Hello again

computer keyboard with display of code for Hello World displayWell, 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…