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.

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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.

Planning for what’s next

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.

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…