I have run out of energy. Again. Just like I did this time last year when they changed my schedule and switched my days off. Except – I don’t have that excuse this time. But I called out of work this past Friday, and three days of rest later I’m not much better.
Every so often, I have been laid low by a mono-like illness with no clinical signs other than extreme fatigue that does not respond to rest and takes about two months to run its course. It matches the symptoms of chronic fatigue syndrome, only it presents only episodically. I’ve caught on to how my body presages it, though, so staying home from work this time is my attempt to keep from having to leave for months, instead of just a day or two. The technique worked last year, so I’m hoping it works again.
But reasons for my predicament are harder to come by this time. I ran myself pretty ragged back in December and January, but I’ve since been getting a good night’s sleep and decent nutrition. The thirty-day lag time preceding onset is suspicious. I mean, here I am, relatively healthy, decently-rested, my pain largely under control, and it still crept up on me, and dragged me under like a concrete weight lashed to my waist.
I keep trying to be normal. I keep trying to make the exceptions I need to make to function as a normal, healthy person, a neurotypical person, a physiotypical person. And, clearly, I am not, and it’s the most frustrating exercise, because I can manage it, if I’m firing on all cylinders, if it’s an ideal environment, often for months at a time. But ask just a little bit more of my body, my mind, and I break apart like a jenga tower after the last critical bone is pulled. Only unlike the tower, I can’t lose a whole bunch of them before I topple. It takes perhaps one or two and I hit a wall.
There’s no place in society for someone like me, straddling the line between abled and disabled. I’m not compromised enough to be truly incapacitated, but I’m not functional enough to hold up under the typical, 40-hour-per-week system. And I hate it. Hate, hate, hate. Where do I fit? What do I do? How do I eke out an independent existence in this lonely grey area so few inhabit that to most people, it doesn’t exist? I’m so done with having to be a third type, find a third way. Not well, not handicapped, but somewhere in between.
Is it awful to say that I miss the pain, sometimes? Because as horrific as it was, it provided a clarity that I long for. The pain was so extreme that it extinguished any possibility of a normal job, a normal life.
Now I’m faced with trying to find a job that not only isn’t physically taxing, but can involve working from home so I can manage my energy limitations, and that I will be able to perform despite being functionally autistic.
Even my autism isn’t complete. It’s so awful to say, isn’t it? Because I’m sure that no-one else goes around complaining that they’re not fully autistic. But I’ve had it for so long and hide it so well that I could go through the rest of my working life without telling someone and it likely wouldn’t matter at all. I’d just be labeled quirky or eccentric. Or better yet, blunt. And no-one has any idea the mental drain it places on me to put up that neurotypical front. And even if they do, they just don’t understand it.
No-one gets it, what it’s like to have to expend half again as much energy to process and perform things that come to them automatically. I wish nothing more than for someone to spend a day inside my head, with the constant turning over of different responses, actions, facial expressions, predictions, the angst, the anxiety, the worry over whether I look right or sound right, in order to seem as seamless as they. I can’t speak the way they do, can’t hear the way they do.
And I miss so, so much. You know what I miss the most? Awe. Neurotypicals have such easy access to awe. Their ability to relate, their facility with theory of mind, means all they have to do is see it in someone else to experience it themselves. I have no such conduit. Maybe it’s a good thing; maybe it would be too taxing for me, with my energy insufficiencies, to be able to slide into someone else’s emotional experience with such ease. But I feel the lack, the gaping hole where an experience, an emotion should be.
I’m so tired of people telling me how lucky I am, how fortunate to have the coping mechanisms I do, how blessed to be as talented as I am, and who knows whether the autism contributes to that, and I should be grateful. I am grateful. But I’m also sad. And worried. I desperately want to be independent. Is that too much to ask? I wish I knew. I wish I knew what I was supposed to do. I keep grasping blindly at opportunities, some accessible, some not, some likely, others less so, trying to figure out what I’m supposed to do and who I’m supposed to be. I have never been good at deciding what’s right for me. I’ve always relied on others to tell me. But now I’m an adult and I’m supposed to figure these things out for myself.
But what if I can’t?
Brilliant and raw. It breaks my heart.
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