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?

Thinking Trans

Sometimes you forget how people would overlook you--how they'd stare and try to figure it all out in the twenty seconds it took to cross a crowded bar. They want to see which door you choose. Either way, you've lost.

You forget how hard you had to fight to be taken seriously as a man in this world, and you forget the price you had to pay for that respect. Some wouldn't call it that at all. Some may say privilege. And they may be right.

You forget the angst and the activism and just start living. The weeks pass and you pass and you finally get everything you've always wanted, along with a whole new set of misunderstandings. The assumptions may be different, but people claim you as their own, trying to squeeze juicy answers out of you until you are shriveled and worn. 

I still haven't lost that fear that someday there will be a problem in the locker room, a situation at the airport, a confrontation at the gas station. But I'll be damned if you think you can make me stand up to pee. 

Today, I remind myself how hard it still is for people who don't look like me. I've never had to worry about my chest--even though I do--and the color of my skin doesn't exponentially increase the chances that I'll be beaten bloody and left to die. 

I understand that I have become somewhat complacent, and I cannot be ashamed of this. But I can work harder to make sure others have the same luxury . And that's the road I have chosen. 

Untitled Poem

All the love in the world will not make

My chest any smaller

My face any clearer

Standing by the mirror

I see half a human 

The other half 

Looming in the shadow of 

Someday

And all the squats in the world 

Won't matter in the end 

When I can't look at myself

Without wondering 

how I got this way

Inside my head

There's no exercise 

In any book I've seen

That can fix 

All that can't be seen 

All the time in the world 

I hear less often 

A mind gone mindless 

Is dead

2014 (to be continued)

I wanted to write a short post about the year before going to work, but I will save that for later. Right now, I will just enjoy spending time with the new puppy my fiance got me for Christmas. That in itself speaks volumes about what this year has been like.

Giving Thanks

This Thanksgiving week for me has been interesting, relaxing, and eye-opening. As many of you know, holidays are not quite what they "should" be for my family. My brother has been in prison for ten years, and since that first holiday without him, which was a Thanksgiving, the magic has left most of these annual celebrations. Also, yesterday would have been the birthday of a dear friend who passed away last year.

Last year, I would have looked at the situation a little differently, but the way I approached the week has helped me to realize the progress I have been making. There are so many stars in the darkness of my sky, and I can see them now. I am engaged to a beautiful man who loves me unconditionally. I got to spend a week with both chosen and given family and realize how truly lucky I am to have such grounding and supportive people in my life. I may have had my moments over the week, but I am okay. I can feel love. I can feel safety. I can feel, and that it so much more than I was capable of one year ago. I am thankful for the return of my ability to feel human.

I may be a day late, but I am thankful for the struggle that led me to this point in my life. I am thankful for being me. And while that may seem selfish, I have not been able to say that in a long time. I am beginning to love myself again, and to me, there is no better gift in the entire world.

Thank you all for continuing to be a part of the many journeys that make our lives both connected and interesting. 

Mental Health, Part II

Although I was less than two weeks into trying to live a functional life again, I thought things were going fairly well, even with the growing pains, which tend to come with all major life changes anyway. My friend and I decided to go for a late-night leg day at the gym, which always makes me feel better, but there was something extremely important that I hadn't thought about since the first day I got my prescriptions from WPIC. There are side effects! (Now is the part where you think about how I slapped myself in the face when I became coherent again.) The side effects in question involve balance, coordination, etc. 

So I thought nothing of putting two plates on (225 pounds total) after our warm-up set, which is typically something I can rep 8-12 times, depending on what set we're talking about. It was just another day at the gym with only a moderately heavy weight on the second set of the night. But something happened on rep five. I didn't feel right--definitely not like myself. In that instant of feeling off-kilter, I nearly ended up with a much worse injury than I did. I felt the forward lean, the bar shifting, and I just let it take me down to the safety guards that were placed just a little too low, unfortunately. Imagine your spine bending into a backwards C, then getting compressed with 225 pounds of weight. Not fun. I knew something dreadful had happened the instant I let go of the bar. My knees came to the ground, and that was the last time I was able to stand without pain. That was the last time I would walk for three days, and in those three days, I thought for sure that there would be surgery, and I began thinking of the then great possibility that I would never walk again. Someone like me is not meant to be kept still. 

After the 10-hour ER visit that itself included buttloads of minimally effective narcotics--one of which made me see writing appearing across the walls a few times--the next 12 days included more narcotics, various other medications (laxatives, stool softeners, steroids, psych meds, etc.), hospitalization, and even more hospitalization at an inpatient rehabilitation facility, where I spent four hours every day doing intensive therapy. Each day, there was progress...along with a fuckload of pain. I'm home now, and there is still such a long way to go before I can ever go back to how my life used to be. I'm still terrified that I won't get to do that. 

What does this have to do with mental health? 

For me, everything. Again, I am not one to be kept still. My body is my tool of expression, whether that be through lifting weights, dancing, or playing music. My body is my ultimate project, and the gym will forever be my home--the place where I found my true self and can connect with that self on the deepest level. I am at peace when I am alone with those weights. There is pain and struggle, but it is for a purpose, and the progress that comes with that kind of hard work and dedication is doubly motivating. There are bad days, of course, but persistence always wins. Always. I am a physical being. I am so much so a physical being that when I cannot express myself in these ways, my mind unravels. 

The meltdowns and periods of "not being okay" went to the extreme this weekend. Think somewhere about level nine, in a public place. All I have been thinking about is getting back to being myself. I physically do not feel right when my body is restricted this way. I feel uncomfortable in my skin when it is not allowed to move freely. I cannot look at myself without feeling that same level of discomfort. I see my body changing before my eyes because I am not allowed to use it the way I know I need to. It's disheartening to see all of your hard work disintegrate right in front of your face. Not only was this my life, but this was my livelihood, as I was scheduled to begin transitioning back to work next Monday. Obviously, with such a severe injury and limited mobility in my lumbar spine, personal training is kind of impossible at this point. (Now is when I attempt to avoid getting sucked into thinking about all the implications this has on my future and my life's ultimate purpose, in order to avoid thinking further about career options/opportunities that I may or may not have missed.)

I am struggling, but tomorrow is my appointment with Sports Medicine at UPMC, and I am hoping they can help alleviate some of my concerns. Being active again will be on my mind until it is able to happen again. I think what makes this a little more challenging is that exercise has proven to be one of the most important factors in controlling my ability to regulate my emotions and increase my level of tolerance when it comes to overstimulation. I seem to be dealing with more than one demon at a time when my defenses are already down. I don't really know much about how to handle this, and I feel like it's taking its toll on those around me. I will hopefully be able to return to therapy on Wednesday when I return for a second intake session, but there might be some insurance barriers. Those same insurance barriers may prevent me from getting medical assistance from the state, food stamps, and the like, though I am not sure if they will inhibit my ability to obtain SSDI and SSI funds. (As you can see, I am finding it harder and harder to stay in the moment. I lose control so much more easily, and quickly.) 

This is why I want to study what I want to study, if I ever get the chance, because I know I am not the only one who benefits or can benefit to this extent from a combination of exercise and traditional psychotherapy methods. 

On Mental Health

Almost one month ago, I was taken to Western Psychiatric Institute and Clinic, ultimately for attempting to slice my own arm open, which would have occurred if not for the timely interruption made by my boyfriend. But there were other reasons that needed to happen anyway. I was non-functional in almost every aspect of my life, and my meltdowns were getting longer, scarier, and more violent, and they would leave me more drained than ever before. I had gone so long without knowing what it felt like to have a "good" day--or even a decent--one that I just didn't see the point in fighting with myself anymore.

I think one of the biggest realizations I have made in these past three weeks is that I am not fighting with myself; I am fighting for myself.

I've written every single day since coming home, and I had written eleven out of the thirteen days I spent as a patient on Floor 13. I wrote enough in those 13 days to fill almost 100 pages.

This weekend was not good. I had meltdowns each one of the last four days or so. I remember falling back into saying that none of it mattered last night. I wanted to run away and let something horrible happen to me. I wanted it to end. The meltdown would subside for a few minutes at a time as we practiced various techniques, but it would always come back just as intensely as before. Two to three hours of that is exhausting. It is understandable that I felt like a failure. (Notice how I am not saying that I believe it, but I am acknowledging that it is what I felt at the time, and that a reasonable person might come to a similar conclusion in those circumstances.)

I've had a bad couple of days, and we are still learning why. We might have made some progress today.

I had been getting on the bus, attending partial for six hours a day, getting on another bus, and then spending two hours in the gym before getting on another bus or walking/getting a ride home. Then I would end up having meltdowns or shutting down around 6:30 or 7:00 each night. The pattern became clear this afternoon when I started to notice that feeling of losing control of my mind, body, and environment. I made the choice to come home after attending the program to give myself a break from social interaction and even social presence. It's almost 7:00 now, and even though I felt the stress building and needed to lie here with my face in a pillow for about fifteen minutes, I am not anywhere near as overstimulated or overwhelmed as I have been at this time for the past week or so. My plan is to walk or get the bus to the gym at the time I had been going before, which is 8:30 or 9:00 pm. I am going to experiment with this to see if it affects my meltdowns in anyway.

Having to chart my own behaviors, even if it is just duration for now, is still very strange to me. But it keeps me honest about the progress I've been making. Having the schedule and checklist has helped me avoid the anxiety that comes with trying to decide what to do and when to do it, decreasing my overall level of anxiety so that triggering events are more manageable. The goal seems to be to create an optimally functioning version of me, however imperfect he may be, so that I have the capacity to handle my obstacles, regulate my emotions, and function as an independent adult in society. This is a long term goal in many ways. Right now, the goal is to make it there and be present each moment of the program.

The goal is to observe, describe, and understand.
Without judgment.

Having written about mindfulness for so long, I find it funny that--now confronted with working the philosophy into every facet of my being--I am having an extremely difficult time. But people are working with me, and they are also working to understand me. I haven't seen her in a few days, but I met a girl in my group that also has Asperger's, though she was only very recently diagnosed. Knowing that and being able to talk with her about things that no one else in the room really understood helped me feel much more comfortable, even on days when she wasn't there. I just needed that initial welcoming feeling, and it didn't come from the typical gestures offered by our society. It came from simply knowing there was someone else like me going through the same thing, sitting right next to me.

One important thing I have finally stopped is allowing myself to write when I am in a cycle of negative thoughts. I have learned to put the pen down or close the computer. I come back to writing when I am in a space that is more neutral. Writing down negative, irrational, or catastrophising thoughts only serves to make them more concrete. It strengthens them, and I no longer desire to give strength to the negativity by which I have sworn for so many years. That doesn't mean I'm doing that well with it at the moment, but I am working on it.

I am working. And it really is like working every minute of the day. But hopefully, in time, it'll be like riding a bike, and I will never have to revisit those dark moments as the person I was when I lived them.

I want things in life, though I don't know how to get them. One of the hardest things for me to do is be 100 percent present. My brain runs in so many different directions at the same time, and this is hardly something I can control. I don't have one train of thought. I have at least seven, it seems. Sometimes it feels as if I am watching seven TVs in my head and still trying to pay attention to the world around me. Even if one of those TVs can be turned off, it's not like I can access them all at the same time. I feel like it'd be like playing Wac-a-Mole. But maybe there are skills I have not learned yet. Maybe this is something I actually can handle. (Again, as you can see, staying in the present is hard.)

My boyfriend has been helping me identify patterns, try new distress tolerance/distraction techniques, and he has even been writing quite detailed descriptions of my meltdowns when they do occur. That last one gets me every time. It's one thing to see it written about a seven-year-old boy who can't speak. It's entirely different to see that those words are referring to YOU. I've just never been able to put myself into the other person's shoes enough to actually visualize how my behavior appears to others. Having a partner so dedicated to helping you be the best you can be is absolutely incredible. I would not be able to do this without him.

I am beginning to be more comfortable asserting myself when I need something, though this is by no means predictable. While I sometimes feel that I am moving backwards, I know that adjusting to so many new things--especially new ways of thinking and approaching situations--will cause things to get worse before they get better in many ways. I am accepting of this. Change can be painful, and pain is not necessarily good or bad. Pain is just pain.

Nothing worth having is ever easy. And my life must be worth having if I am working this damn hard to make sure that it can be better.