What could be… what could have been?

sunset solitude falling stars
Sometimes I just have to wonder…

I’ve been thinking a lot, lately, about how could my life have been (and be right now), if I weren’t so wiped out all the time. Yeah, I’ve been perseverating about it, caught up in a self-defeating loop of “what if” scenarios that always end up making me look like a total loser and a liability to the world. I’ve been low-level depressed for weeks, now, and I frequently find myself just dragging myself through my days out of habit, rather than any particular interest or motivation.

The thing that’s dragging on me, is how it’s gray and rainy and cool and October, and I’m not in Europe. Ever since I moved to Germany in 1985 (I lived there for 2 years, while I attended uni), I’ve had this intense association between the kind of weather we’ve been having now, and being in Germany. It’s an almost overpowering sense of orientation — or rather, disorientation –that “places” me in a land where I’m not a native speaker, I’m on the fringes of society, kind of living in a parallel space, and there is tons of structure and predictability to help me live my life as efficiently as possible.  I miss that so much. I miss England, too, where I spent a bit of time in consecutive autumns, 10-15 years ago. I miss being in that Europe I remember (which probably doesn’t exist anymore) so much, it’s painful.

Anyway, I have a niece who is very much like me, and she’s living her life in similar fashion to mine. Except that she’s very, very social. Very successful. Really ‘with it’ and grounded, and she’s already got so much more going for her, than I had, when I was her age. She’s in Italy, right now, with a college exchange program, studying art and creative writing. And she seems to have exactly the kind of life I always longed for — and access to the kind of supports I never had, which are making it possible for her. She’s got some issues, which shall remain private, and she’s gotten help for them. She’s thriving. And she’s living the kind of life I always longed for, but could never seem to set in motion.

Fucking autism. I mean, seriously. When I was her age, I was a wreck. I’d been a wreck for years. All my life, really. But I hid it very well. I look back on the pictures of myself, from my early childhood and youth and adulthood, and all that shows is an attractive young woman who seems to have it all together.

I don’t look at all impaired, if you just glance at it. If you know what to look for, though, you can see the rigidity, the rehearsed smiles, the poker-straight posture, the shield I kept up that kept everyone at bay. There are some pictures of me where I’m actually relaxed and having a good time, but those are few and far between. Everything else is about me keeping up appearances and not letting on how much trouble I was having.

And I think about my niece. And I wonder if maybe, just maybe, she’s actually in the same boat that I was. On the surface, she seems to be having a great time, connecting with people, doing great. Just like I appeared to be, once upon a time. Maybe, just maybe, she’s really struggling to keep it together, rehearsing her interactions like I was, and wondering if it’s all really worth it, in the end.

Honestly, given my history and my life experience, I should know well enough just how easy it is to present as a perfectly happy person and pass as neurotypical. I looked every bit as comfortable and capable as my niece looks, but my recollection of those times is very, very different from how I looked.

Same holds true, now — I come across as very together, very ‘with it’, very ‘high-functioning’/normal. Augh! It’s impossible to ask for help — it’s that old double-bind, where if you let on that you’re having trouble, you’re punished for it and demoted to “needy” status, but if you don’t let on, then you have to wrangle your life all by your lonesome.

And I wonder, yet again, what my life would be like — what it could have been like — had I not been so overwhelmed / tired / wiped out / playing catch-up-to-what-you-missed, my entire life.

Part of what’s pushing me in this direction is seeing my niece living the kind of life I wish I had. Part of it is being in a job that’s really unstable and unsure (a re-org is on the horizon, but no details are forthcoming yet). I look around me at the job market, and it exhausts me to think about going out to find a new job… starting all over, yet again… launching into a year’s worth of grinding down to a nub — first, the job search, the soul-sucking process of convincing others they should hire me… then the interviews… then the hiring negotiations and process… then the acclimation to my new position with new responsibilities and a whole new bunch of people I have to get to know.

Groan. And all this on top of a burnout and a fatigue that never entirely goes away. Even when I go on vacation, there’s no relief, because being off my schedule and sleeping in a different bed, eating different foods, and not having my customary space and routine, is a challenge in itself.

Spare me.

But enough of the self-pity. I can spend my precious time feeling sorry for myself, or I can realize the benefits I’ve gotten from the life I’ve led. Actually, dealing with all the burnout and the exhaustion has trained me to keep on keeping on, even when I am not feeling at all up to it. It’s trained me to stay focused on what’s most important in my life. It’s taught me (in conjunction with my mix of Stoic / Zazen practice) how to take a hit and keep going, no matter what. How to persevere. And how to not give a flying fuck what others think about me, because they’re not the ones living in my hypersensitive skin.

For all that my autistic difficulties have cost me, I’ve also gained a whole lot. And I realize, more and more every day, how those gains really put me at an advantage when I am living true to myself, being my autistic self, taking care of myself, and also not forcing myself to abide by the linear, verbal, hypersocial guidelines of the allistic world.

When I go non-linear, visual-spatial, and I withdraw into my own inner circle (sometimes removing myself from all social interaction for days at a time), I’m good. I’m so, so good. And all the “advantages” that the non-autistic world claims to offer, just look hollow and sad.

As hard as it’s been for me, as much as I’ve lost in terms of financial security and social acceptance, I’ve gained a huge amount in terms of discipline, resilience, and good old peace of mind that can’t be overturned by the winds of the world. And that’s pretty cool.

Don’t get me wrong — I still believe that getting an autism diagnosis much, much earlier would have helped me tremendously. It would have been great to have a clue about why I was functioning the way I was. I struggled and suffered in many, many ways that now seem so preventable. I’m incredibly relieved to have that information now… and to know that other women and girls much younger than myself, have access to more information than ever before. Services and supports, not so much, but at least there’s more information for them all to learn and use. But that will never erase the challenges, the problems I had for so many years, which screwed with my ability to follow through on my plans and dreams, and even punished me when I did.

As for what could have been… I’m not so sure I would have wanted all that I missed out on, anyway. Maybe it’s sour grapes, maybe it’s actually being realistic.

As for what can be… that part’s up to me.

5 thoughts on “What could be… what could have been?

  1. Long term Burnout i now it well, i live it daily, it never moves away from me since I had a serious health problem that exacerbated my ME/CFS…. mix in my autism and I’m beyond knowing where this Burnout originated but I know how……consistently pushing myself too far not recognising my limits when I had that rare good day. I’ve found myself in a place possibly beyond recovery from Burnout… after all it has been 20 years since it started.
    Maybe i’ll be able to regulate my passions and my single focused involvement… immersion in each new venture.
    Late Diagnosed I’d have preferred to understand the parameters of my realty much earlier in life.

    Liked by 1 person

  2. Knowing would have definitely helped me. Unlike you, it wasn’t even on my radar as a possibility until this year. I can already see some benefit just in being better able to identify how I’m feeling and reacting in a way I couldn’t before. And I’m hopeful counseling (with a psychologist who understands autism) might actually help this time, even though it never has before. I had shared some of my writing on how hard even the seemingly simplest interactions are for me and how easily they go off script. And during it I was describing past therapists deciding I was depressed, even though that never seemed to exactly fit and always ended up a dead end. Then I started my usual searching for some way to express how I feel and watching me she suggested, “Overwhelmed? Tired?” I stopped and thought about them for a bit and agreed they felt right. The more I’ve thought about, the more right they seem. By any scale or standard, I’ve overcome more and accomplished more than many people do. And I handle crises pretty well, I think. I’ve certainly had my share of practice. It’s 51 years of constantly managing (or mismanaging) the constant weight and pressure of everything involved with just living in the world that’s left me with an unrelenting, bone-deep exhaustion. I’m so, so tired.

    And yes, I can keep on keeping on. I also have an unrelenting will. And those daily pressures aren’t going to magically go away, nor do I expect them to. With my personal lens in better focus and the right external observer, I’m more hopeful than I’ve been in a long time that I can find ways to manage that constant weight and pressure and actually relieve some of that tiredness.

    And thanks for posting your reflections. They are helpful to read.

    Liked by 1 person

    1. VisualVox

      Ah, yes… Knowing really would have helped. The weird thing with me is how, even when I “knew”, I would conveniently forget, because I always had that option. I could try to do the stuff everybody else did, and then screw up… and then beat myself up… and have to do all the damage control… all over again.

      Since my assessment in August, a lot of stuff has shifted for me – and in a good way. I can stop avoiding that stuff now. And just deal with it.

      Tired. So, so tired. I hear you, brother. Right there with ya.


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    Reblogged this on the silent wave and commented:

    Such a terrific post, in so many ways. I’ve been thinking a lot about this, too. It’s so tempting to play the “what if?” game. Sometimes it’s fun and interesting. Sometimes it’s depressing and sad. And sometimes, it’s both. As the (talented) author states, “I can spend my precious time feeling sorry for myself, or I can realize the benefits I’ve gotten from the life I’ve led.” Bravo!! 🙂

    Liked by 1 person

    1. VisualVox

      Thank you. Yes, it does get depressing, and I cycle in and out of it. It’s all part of it. Today, I am thinking about how my own experiences have made it more possible for me to relate to others who are in pain… and motivates me to help relieve that, as best I can. It’s all part of it.

      Thank you for your kind words 🙂


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