Finding the Beginning

It's finally quiet in the house, and I have a good twenty minutes to myself before leg day, the first since the second time a parasite decided to inflict some moderate-to-sever damage on my body and mind. I remember the first time it happened quite vividly. Month after month, I continued to lose weight, sleep more, eat more, and become more depressed until I ended up in a psychiatric ward for the first time in my life. Weeks ago, perhaps even months, more of the same started to happen, but this time the neurological symptoms were the first to appear. I became dizzy and fatigued, with numbness and tingling sensations spreading through my hands and face. I couldn't keep anything down, no matter which way you're thinking. And then came the hospital visit where the doctors were convinced that there was nothing wrong with me at all. Everyone thought I was just being dramatic. A few more weeks went by. I slept for four days straight. A few days later, I found a piece of the little bastard, called my fiance, and made my way to the emergency room at the same hospital that refused to keep looking for an answer when I assured them that something was definitely not right with me. I was out in less than two hours--less than an hour and a half even--because I was the third case the doctor had seen in 35 years. So if you ever need to go to the ER, tell them you have something really bizarre, and they'll pick up the case right away.

Anyway, I'm still not entirely okay. I'm weak and miserable. I'm fighting the worst depression and anxiety I've faced in a long time. And giving up is the only thing that makes sense to me anymore. It hurts to even be conscious most of the time. Today isn't a particularly bad day, but it still took until it was almost dark outside for me to get myself moving and out of my bedroom. I do what little on which I can focus my mind, but I know that just isn't enough. At nearly 27, my life is still going nowhere, except maybe spiraling downward, while everyone else seems to be moving on and moving up in the world. I keep thinking that this isn't what was supposed to happen. What happened to the dreams I used to have? What happened to the ambition that couldn't be contained? Have I really been defeated that many times where I can no longer see the purpose in trying to attain that command over myself again? I know I need help with even the simplest parts of getting back to "normal". And it has to be in parts. Small parts. It's hard to make people understand that you really do need things broken down that way. It's hard to explain that someone's advice or instructions don't make sense when it comes to putting them in practice. It's even harder to say admit that sometimes I don't have control, even when it seems like I do or should. It's not logical, not on the outside. It's just the way my head works. The depression is only a part of it. There is no way for me to fight the limitations my autism places on me. I can only work around them. And that's the trouble with this place. No one seems to be able to help me figure out how, and that's not something you just pick up in your day-to-day life. The world isn't built for people like me. I've run out of creative ways to survive.

It feels like I'm drowning inside my own head. Screaming, crying, having a meltdown--all these things would help to alleviate some of the frustration that's been building for months, years even. But I can't get myself to the surface to be able to do that. I sit here, stuck under water, suffocating, while I put on the best face I can for the people around me. I'm tired of seeing them get hurt. I see the looks on their faces. I see the fear that anything they say will set me off, and I see the frustration. They're more over it than I am. They see my obsession with my own misery and less-than-desirable circumstances and cannot comprehend how I can't just shift my attention to something else or force different thoughts into existence.

I had planned on going to the gym tonight. But I haven't felt this able to express myself in months, and right now, that's more important. My body has been a source of extreme discomfort lately, as I have watched it change so rapidly into something I have worked years to overcome. But without my mind, I am nothing. Unfortunately, I still feel like nothing, so what am I to do?

Maybe a little more explanation about myself is in order. I owe it to those closest to me, even though it's difficult for me to discuss.

I've searched and searched for better ways to explain what I am about to attempt. No one else's version seems to work. So I will give you mine. It may not be complete, but it's a start.

I'm one of the most socially awkward people you will ever meet. But I'm a fantastic actor, and I've learned to play my part well. I'm the one that's perfectly content to sit quietly and listen to your conversation, unless it's something I'm really interested in. Then I probably won't shut up. And I own't notice how annoyed you're getting. I won't get the hint, and I'll take everything you say at face value. If you look upset, which to me is looking anything other than happy, I just assume it's because of me. Because that's all that is there in front of me. Your past history is not concrete enough for me to see at first, so it doesn't enter my mind. I can seem cold or disinterested. I may brush you off. Most of the time when I say "I don't know", it means that I REALLY don't know. I don't know what emotions I am feeling at the time I am feeling them. They keep building up inside until something truly unbearable accumulates, and then I am even less likely to understand or know how to behave. Asking me to talk it out often makes it worse because it is an additional struggle/frustration just to try to get the words out. If I don't have it figured out in my head, how can I try to explain it to you out loud? Sometimes, my frustration builds to the point where I can no longer physically and mentally deal with it. I fail to process. It's a computer crash. There's nothing to do but restart the machine, and sometimes that isn't so pretty. As much as it sucks for everyone around me, sometimes I just need to go through it. A meltdown. Shut down. Whining about the same thing over and over again. And I applaud anyone who has the patience to deal with me. I know people want to show their concern with hugs and whatnot, but that just adds to the physical overstimulation. If you've ever felt like you just needed to scream and have everything in the room stop--put on pause like in the movies--you know what I feel like nearly all the time.

And I'm obsessive. I can't let things go. There are things from twenty years ago I can't let go. I still feel all of those emotions just as strongly as I did then. And thinking about the situation only takes me back to that exact time, and I relive the emotions, often repeatedly over days, weeks, months, and years. One little thing that means nothing to you can ruin an entire month for me.

That brings me to my most recent struggles. These are the most problematic for me. I can handle being socially awkward and isolated, as long as I have my fiance by my side. Very few people truly understand me, and I've never met someone who's wanted to try as hard as he does. But even he is wearing thin. He has a new job that's pretty demanding, and he is gone for days at a time. And I am left with myself and no one to help me with my release. I don't even trust my therapist that much yet.

Anyway, executive functioning. I say that I have problems with this, but many people probably don't know what I'm talking about, so they ignore it, like skipping the infamous whale anatomy chapter in Moby Dick. This time, I've found a pretty good summary thanks to the internet.

Executive function refers to a set of mental skills that are coordinated in the brain's frontal lobe. They work together to help a person achieve goals. The skills in question are the abilities to manage time and attention, switch focus, plan and organize, curb inappropriate speech or behavior, and integrate past experience with present action. When executive function breaks down, a person's ability to work or go to school, function independently, and maintain appropriate social relationships can be affected.

So when I tell you I really don't know how to get my shit together and move forward with something, even if it is specifically told to me what I need to do--which often is not specific enough--I really mean it. It's not that I don't try. Half or more of the trying comes in trying to mentally prepare for what needs to be done, sorting out the mess that's in my head. It's like having a bunch of papers and supplies scattered about my desk. I can't hope to do anything until all of that gets organized and put in the right place. But sometimes there just isn't anywhere to put anything, so I am stuck with all the anxiety of needing to do a task and a complete inability to get it done. Then I get stuck on not getting things done. And every time, it feels like something new. I can't use what I have learned from the times before to help me through a crisis situation. That information is just not accessible. So while you feel like you are repeating yourself, my brain acts as if it is the first time hearing any of it at all. Meanwhile, I'm still dealing with all the sensory issues and anxiety and depression. And all the friends that think I don't care at all because I can't figure out how to maintain my relationships and manage my priorities.

Why was I so much better at this before? There were a lot of clear rules for things in my past. School was pretty straightforward. I didn't have to think about coordinating so many different things at once or prioritizing. I did what needed to be done according to the deadlines set for me and stuck to the schedule laid out for me. But as things progressed, I started to lose control. Deadlines became flexible and I got left on my own, and in my entire life, I've never had any preparation for that. Being smart got me through most of my academic life, but I've learned the hard way that there is so much more to being a functioning member of society. And I'm not fully capable of doing everything yet. And people are really surprised when I say that. They think I should just be able to figure it out and get it done. But these are the people that don't see the world the way I do. I know the only way to come to a solution is to achieve mutual understanding.

I'm becoming a little more sure of what I want to do. But I truthfully don't know where to begin. I need it one step at a time. Painfully obvious steps to most people. And that doesn't exist. It's even more problematic that the simplest solutions just won't work for me. And I worry that all of this, in the end, will prevent me from being able to function in the life that I really do want. Once and if I get to where I want to be, how do I sustain that life? I haven't been able to sustain much of anything in my adult working life. How do I change that when embarking on an even more difficult path? I know this information needs to come from someone like me. A neurotypical answer won't be enough.

I want what I want, and I am finally feeling good enough to say that. I'm really over mediocrity and settling for less than what I know I can do. But the path isn't clear to me. It seems I'm not low enough functioning to not understand but I'm not high enough functioning to actually get shit done. Where do I fit? Where do I begin?