Unexpected. Plus and minus and plus.

This week is turning out to be a lot busier than I expected. It’s also very dynamic, as a bunch of colleagues from halfway across the country are “in town” all week for all day workshops.

I didn’t actually realize that I was supposed to attend the workshops, because my job does not overlap a lot with what they are discussing. However, I do have a whole lot of experience in thinking through this entire process that we are going through – re-designing a massive website that cannot not work.

My boss even told me he didn’t think that I needed to be there, but other people who attended asked me why I wasn’t there, so I realized that my boss had not specifically told me not to go, but had made that statement as a lead in for further discussion.

He keeps doing that, and I find it very confusing. I wish people would just say what they are thinking and quit hinting around and expecting me to come back with a counter–comment or somesuch. It’s just not a good use of time, but that’s how people work so…

Anyway, people really liked having me there in the workshop yesterday, so I’m going back again today and again tomorrow, effectively trashing any kind of productivity that I was hoping to have this week. I’m under a bunch of deadlines, and I can’t really afford to take the time out, but there’s still a lot of team dynamics stuff that I need to sort out and work through, so I can work effectively with these people

What I have noticed, or rather discovered, is that it is next to impossible to get anything done in the changing organization, unless I have a good relationship with the people who I am asking for a favor. People don’t actually do the right thing for the right reason around here. They really only do what they are asked to by people who they like and trust. I find that absolutely bizarre. Why would you predicate your behavior on personal feelings about another person? If a job needs to get done, it needs to get done, period. There’s no personal preference involved. What needs to get done, needs to get done.

If only everyone shared my point of you, maybe the world will not be in such a terrible mess, right about now. But I’m being grandiose again, so I’ll drop the line of reasoning.

Anyway, I’ve been sitting in rooms filled with people talking all day, and I have to do it again today and tomorrow, until I get a break. I had to go to dinner with these people last night, which was typically challenging in some really uncomfortable ways. The restaurant was busy, we were crammed in for beside each other, the prices were high, the food was complicated, and I really wasn’t sure about the etiquette of who pays for what and when. In the end, other people treated the whole group to dinner, which is fine, but that doesn’t change the anxiety that nag me all evening.

These kinds of social events are such a gauntlet. I did manage to step away A few times during the evening, but I always had to come back to the table, to the crowd, to the confusion, and although the evening ended with no serious mishaps – bonus! – It’s still feels like a whole lot of work for nothing.

Except that now I might actually be able to get some things done, because people know me better than they did before. That’s some consolation, but not nearly enough.

Anyway, the whole thing is a mixed bag. On the one hand, I enjoyed getting to know other people better, and I am comforted by the thought that we are bonding and they are coming to trust me more, but on the other hand this is going to make it harder to leave. Maybe. I don’t see my current job as a long – term prospect, but who knows? I might surprise myself and find a way to tolerate this.

Eventually, I might just figure out how to interact with these people without screwing too much up. It’s a goal.

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An epiphany 20 years too late

Autistic emotional disconnects seem to be the topic du-jour. I keep coming across references to alexithymia and emotional incompatibility. I’ve been keenly aware of it myself, these past weeks.

autism editorial

I had a thought this morning as I tried to establish a timeline of my moments of awareness that I was somehow different from other people. I had begun a period of my life in which I expected to suddenly feel like I belonged, and that sense of belonging would allow me to finally understand other people and be able to interact with them and become part of something.

images.duckduckgo

This is where it happened, right in the attic room on the corner of this building where I lived when I was an art student. It was here that I kept a journal (which I later destroyed). I used to climb out onto the roof and look over the city and write each day.

My expectations at that time was that I would finally feel complete and would understand how I fit into the world around me and engage with the…

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#Alexithymia… again

snow monkey sitting in water

It’s been a very strange bunch of weeks. I’ve been on an emotional roller-coaster for reasons that aren’t immediately clear to me. I go through my days with a combination of logical efficiency and having to fight back tears.

Take a break… find an empty conference room and compose myself… Or put on my headphones and hunker down in my cubicle till the emotion passes.

Either that, or I’m flying along without a care in the world, dealing with whatever comes up with surprising alacrity and presence of mind.

Or I’m in a numb state of overwhelm that just doesn’t add up, because my life is no more overwhelming than it’s ever been. If anything, it’s less overwhelming, because I’ve cut back on the sheer volume of stuff I do on a daily basis.

Maybe that’s it… maybe I’m feeling the loss of my intense focus and drive. Maybe I’m suffering from a lack of mental activity. I know I do feel unchallenged in my daily life, and my greatest cognitive challenges are not losing my mind in the emotionally, sensorily vacuous political atmosphere I function in, each day.

Come to think of it, I probably have a lot of good reasons to feel sad and bereft — yeah, bereft is how I feel. I can’t list all the reasons here. At the same time, I have just as many reasons to feel positively bouyant… which I do. Back and forth the emotional pendulum swings…

And all the while, I know that things are happening that I should be feeling something about. Something… But I can’t muster it. I can’t summon the sensation. It holds back, it keeps its distance. It’s just not there for the taking, whenever I need it.

Which makes me look cool, chill, sometimes even cold.

I don’t want that. So, I feign emotional responses. A lot. Based on what I see others doing. I do a lot of mirroring and mimicking, these days. And yes, it’s exhausting. Because there’s no room for someone like me who doesn’t feel something on demand, and people distrust others who aren’t like them. And I work with people who are skittish to begin with, what with all the layoffs happening and organizational drama taking place.

In some ways, alexithymia really comes in handy. It keeps me out of the pit of despair that everybody gets sucked into. But then my empathy kicks in, and I co-experience other people’s dramas, without really knowing why. I don’t sense things in the same way, with the same cadence/regularity that others. So, I have the dubious honor of sharing their emotional states without really knowing why…

And yes, it is exhausting.

So, I curl up in bed at the end of the day and weep. For whatever reason. Reasons I can’t imagine, that I can’t fathom… but which show up, days, even weeks and months on down the line.

Oh…… So, that’s why I was so upset!

Always an adventure. Always.

#Alexithymia : When there are no words.

I’ve been a weeping mess, myself, lately… for no clear reasons I can discern. Oh, sure, there are a handful of explanations I can easily think of, but the depth and intensity of the emotion is just so disorienting.

So, I cry myself to sleep, then get up the next day and live my life all over again.

This calls for a blog post…

private person surfacing

#Alexithymia in action  in the near present……  beyond words!

It may seem odd but once again I found myself overwhelmed with tears. Tears felt wholeheartedly and there was no emotion I felt apart from ” overwhelm”.

What precipitated this flood of tears?

Some may think it quite strange but it was watching a recording on TV 7 Mate of  AFLW. Australian Football League Women’s match… this overflow has happened every time I’ve viewed a match in the past months. It is a new, like brand new, women’s competition… the first time Aussie Rules Footy has recognised and established a women’s league.

Don’t know about others out there who find themselves flooding tears for no apparent reason…. but I feel embarrassed if anyone saw me in this state.

I’ve not been able to understand my emotional overflow in this case.

I’d been reading and writing on alexithymia over the past few…

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Sharing: The pursuit of loneliness: how I chose a life of solitude | Society | The Guardian

Great piece that I can relate to. I’m not in a situation where I can choose to completely disconnect, but I sometimes think of myself as distinctly “Japanese” — maintaining my solitude in the midst of the teeming throngs.

Since the late 1980s, scientists have been tracking a whale who sings at a sonic frequency higher than any other whale of its species: at 52 hertz, just above the lowest note on a tuba. It sings songs no one answers. Internet societies have been following it for years like sad Ahabs, transposing their own feelings on to it, believing they understand it. Alone in their bedrooms they hunt this whale they believe to be lonely just like them. Talk to scientists and they will say other whales can probably hear it, maybe it’s deaf, maybe the whale’s song is the result of a genetic mutation. But it doesn’t matter: the lonely people have taken this whale as their totem. I’ve followed it for years.

In 2015, I tried psychodynamic therapy for what my therapist called “a loss thing”. Months prior, my grandparents collapsed on their bedroom floor and died in hospital, days apart, from the same case of pneumonia. The upshot was that birthdays make me miserable and trailing their twin coffins into the crematorium on my 29th birthday didn’t feel wildly out of sync with my mood. What followed this – one of the rawest experiences of my life but also one of the best attended birthday parties – was pulling the plug on a relationship that had been comatose for years, divvying up not only books but friends, plus the death of a Labrador I got when I was 12. It felt like the things that kept me tied to my youth – a blind dog, the unchanging 1970s blue bathroom in my grandparents’ house, nearly all of my 20s – were disconnecting their carabiners and pushing me out into space. A loss thing.

Read the rest here: The pursuit of loneliness: how I chose a life of solitude | Society | The Guardian

Moving right along

person in maze - 360 rana foroohar uncertainty
360 – Rana Foroohar – Uncertainty

I’m chugging along in my life. Finding my way through things. As usual.

Making the most of it — regardless. All of life presents itself to me, and I get to decide what I do with it.

There’s plenty of stinking muck under this lotus.

And there’s plenty of heaven above my metaphorical (and literal) head.

The richest soil comes from compost. All the ingredients that support life, coming from some sort of death. The process of composting is never pretty, never dainty, never as sweet-smelling as we’d like it to be.

Some time back, I spent some (very little) time downwind from a the decaying remains of a beached whale. The stench was overpowering, and it carried to the nearby seaside town. Tourists were walking around with their hands over their faces, but they/we all had to make the best of it. Because it wasn’t easy to get to that town, and we’d all made the investment of time and energy, and By God, we weren’t going to be chased off by the cycle of life.

We made the best of it, finding areas upwind of the rotting carcass, keeping ourselves otherwise occupied, trying to not pay it any attention. It wasn’t easy, but it worked.

And in the end, nature ran its course. The whale was eventually consumed by scavengers and the elements. Was it pleasant? No. Was it convenient? Not at all. But it was part of the whole. And that rancid death made plenty of other life possible. Just like the Mara River in Kenya kills thousands of wildebeasts each year… and then gives life to everything else.

It’s all part of it. The bad with the good. My job is to navigate the whole.

And so I shall.

What if I just let that sh*t go…?

danger falling rocks sign

“If you want to hear God laugh,
announce your plans.”
– Said someone somewhere, sometime.

I’ve been a pretty reliable source of entertainment for God, for years, now. And while I’m sure He’s gotten plenty of good laughs from me (you’re welcome, God), I’m kind of tired of being laughed at.

Don’t get me wrong – I’m autistic, so I’m used to being laughed at. And if anybody has a right to do it, that would be God. (I’ll overlook the fact that I don’t actually believe in God – I’m taking artistic liberties here.) But now, after all those years of striving and hoping and planning and wishing and working… I realize that God laughing at me really shouldn’t bother me at all.

Truth be told, the point of all my undertakings hasn’t been in the neurotypical mold. It hasn’t been in anybody’s mold. And that’s the point. I’ve frustrated my family and colleagues and bosses and recruiters for years, with my laissez-faire approach to career and undertakings, my lackadaisical, shifting focus from one fascination to another, not to mention my (shrug) “whatever…” attitudes toward advancement and achievement and worldly success.

The world’s idea of success is fine for everyone else. But I’m just so tired of it. What a time-sink it is. What a heart-breaking waste of time it is for me. All the shiny baubles and trappings and evidence of world domination that brighten the day of the Masters of the Universe… they just leave me cold. All the goals, the intentions, the schemes… yeah, I’ve had them a-plenty. But what I’ve gotten out of my life has been so much more than all the plans and hopes and wishes that urged me along.

I got a life. I got experience. I’ve failed fantastically at many things, and I’ve done so-so at others. Sometimes, I’ve nailed it. Just “hit it” exactly right, and I managed to ride a wave of success and achievement for a number of years, till I moved on to the next thing. And in the end, I think my failures have served me better than any of my successes.

That fact means more to me, every single day.

It’s not the end result of my plans and activities that’s meant the most to me, or that’s stood me in the greatest stead. It’s been the process… the experience… the peripheral collateral of joy that’s come along with the endeavors. The ultimate goals of specific intentions was really just the context, the impetus for moving me along. Ambition is the delivery agent of experience. And unlike some who revere the final result of a completed project/plan/scheme, for me it’s actually all the other stuff in-between that matters. Experience — good, bad, or neutral — is what’s made my life what it is — something cool and awesome. And far more valuable than any flush bank account.

So, I’m letting certain sh*t go. As in, the “end game” ideas that have progressively dragged me down and made me increasingly uncomfortable and frustrated. I’m shifting my ambition away from specific “targets”, and towards the quality of my experiences. I’m tired of being pushed and pulled by internal drives and external impetus toward specific outcomes… and then never getting to enjoy myself along the way, because the specifics haven’t materialized exactly as I’ve dreamed them up… or as others expect them to.

I’m also letting go of looking back in frustration, looking back in criticism, viewing my past as a series of failures. Failures at what? Some idea I had in my head about “how things should be”? Or worse, some idea that some marketer out there concocted to sell me? Those rocks and blocks are like so many useless, pointless obstructions teetering on a cliff above me (as I wait for them to break loose). It’s time to cut them loose myself, and just live my life, driving around the blockages with a gunning motor and a squeal of brakes… doing what I do for the love of it, rather than for money or quantitative measures. Quality, not quantity, is what I seek.

And interestingly, when I’ve put the emphasis on quality… on my own experience… somehow money and other quantitative measures have showed up.

I’ve still got a lot of dreams, still have a lot of hopes and plans… but the important thing now is really the process I go through as I make my way along those paths. The “final” destination I’m shooting for is just the carrot enticing me along… keeping me motivated… keeping me interested. But it’s not The Reason I do things, anymore.

Something much more intriguing is filling my life, these days — What Happens In Between.

And I’m finding, when I let go of specific outcomes, they actually show up — not always exactly as I envisioned them, but present, nonetheless.

Until they give way to What Else Is Yet To Come.

Sharing: THINKING PERSON’S GUIDE TO AUTISM: Autism: What ERs and Hospitals Need To Know

Flickr/Creative Commons [image: Doctor giving a heart exam to a patient on a hospital bed. Both people are East Asian.]

I am a professional disability advocate in my mid-thirties. I am also autistic and have various learning disabilities/mental health diagnoses. I have always been very lucky in that I live in a state that gives me good access to healthcare, despite the fact that I am very low income.

I was a personal care aide for many years, and due to this I developed back problems. In the spring of 2016, they became significantly worse. I tried many, many therapies and medications. I was eventually diagnosed with an extruded disc, and had surgery in January, 2017.

Although my surgery was supposed to be routine, and all of my health care practitioners knew in advance about my unique neurology, it quickly turned into a bad situation: I reacted very violently to the anesthesia, then had an allergic reaction to the opioid painkillers (which did not work otherwise). I ended up having two ambulance rides, two emergency room (ER) visits, and an overnight hospital stay over the course of 72 hours. None of this was pleasant—I would even say it was hellish at the time—but I also ran a 103 fever for unknown reasons, and so spent part of the experience hallucinating.

Why Hospitals And ERs Need Better Guidelines For Treating Autistic Patients

I would like to make clear that I am very grateful for the care that I received at the hospital, and I understand that the doctors and medical personnel were acting in my best interest while also running a busy city ER. However, as an advocate, I would also like to ensure that what happened to me never happens to another autistic person.

Read the rest of this great piece: THINKING PERSON’S GUIDE TO AUTISM: Autism: What ERs and Hospitals Need To Know

Finding my “sea legs”

ship in a storm with lightning flashing around it

I have to say, the past few days have been some of the best I can remember having in a really long time. Plans didn’t work out. Schedules changed. Expectations weren’t met. I didn’t get nearly as much done as I’d intended. But somehow I’ve been staying chilled out and even-keeled.

My work situation stinks. It just irritates me so much. So, I’ve been putting my resume out there, in hopes of finding something new and different. It’s slow going, because the automated systems in place “see” my educational history, and they block me before I can even reach a live person.

Whatever. Where I am now isn’t where I want to be for the long term, but I’ll make the best of it, while I have to. I’m finding ways I can meet the basic requirements each day, but still keep my sanity intact. And that’s fine. I just can’t get too wrapped up in expecting more of it than is reasonable.

My home life is going better than it has in a long time. I’ve let go of a lot of my old persnickety obsessions (and yes, they are obsessions) with perfection… not fretting if Everything Isn’t At Peak Expression… letting a lot of things slide and going out of my way to not take stuff personally. I’m treating dynamics that used to drive me batshit as opportunities to learn and grow and strengthen my character.

Healthwise, I’m doing okay. I’ve got intermittent pain, vertigo, and a whole raft of sensory issues. But you know what? It’s all old news. I’ve been through the wringer over this sh*t so many times, over the past 40-some years, I can’t even worry about it, anymore. It should come as no surprise to me. In fact, if anything, it should (and often does) bore me. Lately, the internal dialogue about my intermittent disabilities plays out like this:

I’m in pain! No shit, Sherlock.

I’m hypersensitive! Well, duh! You’re friggin’ autistic.

I’m uncomfortable! This comes as a surprise to you? Exactly where have you been for the past 52 years, that this is noteworthy?

I really am losing patience with myself, over all my wailing and gnashing of teeth. Seriously, it solves nothing. Might make me feel a bit better (temporarily), but it doesn’t change anything. And it seems I’m subject to an odd supposition that anything could be perfect… ever.

Silly. What am I thinking?

In a way, I feel like I’ve been kidnapped by pirates and taken away on a stolen ship, crossing stormy seas both night and day. And all my life, I’ve been wishing I’d never been kidnapped… longing for dry land that stays stable… just wanting to get to the proverbial shore and get off the ship.

To no avail. After way too much bitching and moaning, I’m finally finding my sea legs, getting the hang of sailing the ocean blue (and black and gray, when the storms hit), and realizing that I actually like it on board this privateering vessel — and accepting that I fit better here, after all the years aboard, than I fit anywhere else. Even if I did get to “dry land” tomorrow, even if I did set foot on shore and not have the ground heaving under me, I’m no longer sure what I’d do with myself.

Because it’s not home.

Home is here. Out at sea. In my storms… and in the company of other misfits and cast-offs and very-very-different folks who “get” me, even when the “normal” world doesn’t.

It’s all very well and good to dream about the luxuries of a staid and settled and conforming life, but here on the high seas, in the midst of 10-foot waves… this is home.

Screw it

Hell yeah.

Who Loves Kitty

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I’ve been lacking motivation lately; that’s no secret.  It’s been a struggle to get through each day.  I’ve been aimlessly wandering, trying to rediscover my purpose, trying to find my mojo, trying to get back on the horse, trying to recover myself again.

I’ve been lost.

Today, a little voice whispered, “screw it”.

This little voice continued on, explaining herself…

Screw the world that doesn’t recognize you; work anyway.  Screw the tight bank account; get your hair done again.  Screw the closed chapters; start learning again anyway.  Screw the inertia; get moving again.

Reclaim and recover yourself; you’re still in there, and you’re still you.  Yes, you’re fighting against greater odds and steeper hills and higher walls.  The obstacles are larger.  But so is your knowledge, so is your insight, so are your skills, so is your experience, and so are You.

Do not let the world win or weigh…

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