Blog Archives

“Crazy”

I’ve been meaning to follow up my last blog post, because the incident has still left me with a lot on my mind. You see, the thing is, the gentleman caught me catching the bus on a Wednesday afternoon. If he had caught me on a Monday morning, I would have been indeed on my way to the “crazy clinic”.

I have a multitude of psychological impairments for which I have been treated for years, and which I have talked about with some regularity on this blog: generalized anxiety disorder, major depression, delayed sleep-phase disorder, and post-traumatic stress disorder. With the exception of the circadian-rhythm issues, these all came from having lived a less than easy life. There were a lot of bad things I went through as a child that left a permanent mark on my psyche. And I’ve been working diligently with medical professionals to erase that mark the best I can.

What if the gentleman had encountered me on a Monday morning? Who knows. I would most likely have changed bus stops, but I probably would have been in tears along the way.

I like to pretend that my disabilities are invisible, that you would just assume I’m healthy if you passed me on the street. This isn’t really the case, though. My disabilities leave me with tense body language and a hypervigilant engagement with my surroundings.

And some people, rather than observing such symptoms in a person and reacting with sympathy, instead erase them with words like “crazy”. Sadly, the mental illness known as lack of empathy is underdiagnosed in our culture.

I will not be erased. I will stand. I will stand for those unable to stand for themselves.

Heads Up

With today’s breakneck primary curriculum, focused more on getting students to fill in the correct ovals than on actually learning and applying anything, I doubt that young students have any sort of “down time” during the class day. This was not the case when I was a child. Our teachers were at times desperate, having fulfilled the day’s schedule, to figure out how to fill in five or ten minutes in the course day.

One of the most effective ways my teachers would fill in the gap was with a game called Heads Up Seven Up. In the game, the teacher would call seven students at random to the front of the class. Then the rest of the class was to put their heads down on their desks and close their eyes. The seven selected students were to each go about the classroom and tap one child on the shoulder. After seven seated children had been tapped, the tappers returned to the front of the classroom, whereupon the teacher asked the seated students to open their eyes, raise their heads, and indicate who amongst them had been tapped. Then each of those children was to guess who had tapped them.

It sounds like a simple guessing game, but in the world of the elementary-school student, it is fraught with sociopolitical implications. You knew there was nothing random about who was tapped. People tapped their friends, and didn’t tap their enemies, and a socially well-adjusted child supposedly had both.

I was not a socially well-adjusted child.

One day in third grade, my teacher Mrs. Benson rounded out the last fifteen minutes of the day with Heads Up Seven Up. She called forward seven children, whilst I joined the rest of the class in putting down our heads. It was a stressful moment.  Would I be tapped? Would a child deign to call me friend? Would I accidentally put my head up when tapped and get disqualified like that one time in second grade?

And then, I was tapped! I had a friend! That day, anyway. As any schoolteacher will tell you, the social landscape of children evolves constantly. Some days I had a friend and some days I didn’t. But that day I had a friend.

Mrs. Benson called us to rise. I looked across the seven students before me, and that is where my troubles began. On the positive side, there was not a one of them I would consider an enemy. But neither did I think any of them was my friend, even for that day. They all resided in this grey area. How on earth was I to pick?

I hoped that I would be the last to select my tapper, which, by process of elimination, meant I would not have to pick anyone. That is not what happened. I was the very first.

I stood up, as I was supposed to, to select my tapper. I looked across their faces for some hint of guilt to no avail. No-one tipped their hand. I flushed as I struggled to come up with the name of the guilty party. I used every deductive tool available to my eight-year-old mind, but came up fruitless.

As I went two minutes without saying anything, I invoked the grumbles of my classmates. Three minutes. Four, and then the grumbles turned into calls: “Just pick someone!” But I thought the goal was to guess correctly, and to “just pick someone” risked guessing incorrectly.

Five minutes. Six. The uproar grew, and even Mrs. Benson urged me to just pick anyone, it didn’t matter. My hands trembled. I nearly cried.

Seven minutes and I had no answer. And then the 2:30 bell rang and it was time for us to go home. As I shuffled to my coat hook, the eyes of all glared upon me. I had ruined the game.

I wish I could say that I have escaped that mentality. Though I’ve worked on it mightily as an adult, the urge to do something perfectly, even when that urge invokes the ire of my peers, still plagues me. The inability to “just pick something” when I have myriad options before me can shut me down. One of the hardest lessons I’ve had to learn in life is that there is often no one right answer, that choices are often value-neutral, and that if I do perchance make the wrong choice, I can recover from and learn from the consequences. Day by day, I’m learning how to defeat my “analysis paralysis”.

And now you know why I don’t post on this blog every day. Often, it’s not because I don’t have anything to say, but because I have so many things to say, and I’m afraid of not choosing the right one.

 

Triple Threat

Writing about one’s own disabilities online is always a huge risk. One of the first things hiring managers do these days is google the name of an interviewee to uncover any reason they might not make a suitable employee. And whilst it’s illegal in the United States for an employer to deny a job solely on the basis of a disability for which they can make a reasonable accommodation, it is almost impossible to prove this is why you weren’t hired. So to be able to go online and say, “I have a disability” can threaten your future livelihood.

But there are things I value more than my future employability. First, I value truth. I often say that my first obligation is to truth. I really can’t imagine living any other way. It’s why I use my real name, rather than a pen name, for this blog. If I say something, I should be able to stand by my words. I also highly value the dissemination of knowledge.

Another of my adages is, “Knowledge doesn’t care who knows it. It only cares that it be spread.” One of the amazing things about the internet is that, if you have learnt something, you can share it with the whole world and they can access it, for all intents and purposes, free of charge. The site-administration tools WordPress provides offer me a glimpse at how people find my blog and what they want to learn. This information lets me know that I am indeed saying some important things, some of which are hard to find elsewhere. (More on that later.)

Finally, I believe in freeing people from guilt and shame. So much stigma surrounds disabilities, particularly mental disabilities, that we don’t really talk about it, which perpetuates the shame. Indeed, I myself struggle to simply acknowledge my disabilities without crumbling into a heap of apologies.

It took a long time to figure out exactly what my disabilities are. It’s not an exact science. We do not (yet) have a way to instantly identify every disabilities from a blood draw or suchlike, and even if we did, a single disability can exhibit itself in radically different ways from one person to the next. At present, doctors look at symptoms and match them against a rubric. Some disabilities look very similar but are treated differently. There can be trial and error involved.

I have wrangled with a number of misdiagnoses. At one point I was diagnosed with borderline personality disorder, but every doctor since has thought this diagnosis is way off. Indeed, when I started to look at the associated behaviors, I couldn’t see how I got that label, other than that I had early-childhood privations and that I am not as mild-mannered as the typical Minnesotan. I have been informally diagnosed with autism by a lot of people–not by professionals, but curiously, by a lot of people who are diagnosed with autism. Again, I have too many behaviors to indicate otherwise, and what symptoms I do have that resemble autism can again be attributed to early-childhood social and material deprivation.

But the most significant misdiagnosis I had was bipolar disorder. And I understand why I got that diagnosis. The label was attached to me upon a cursory observation, when I was agitated, thinking and talking very fast, and having a lot of trouble with my sleep. And so I labored under the diagnosis for over thirteen years.

But then I started seeing a new doctor, and he couldn’t observe the manic symptoms associated with bipolar disorder at all. Indeed, when I was “agitated,” I did not exhibit classic symptoms like grandiose thinking, excessive trust in others, and financial irresponsibility. Likewise, my sleep disturbances were not in a pattern of staying up a long time and only sleeping very little–I was sleeping a long time and forcing myself to stay awake a long time in a failed attempt to reset my circadian rhythm.

In the end, my diagnosis of bipolar disorder was revealed to be three separate disorders that, when combined, looked like bipolar disorder at first glance. Major depression is the most obvious, I think especially to those who know me well. I think most people have a basic understanding of depression, though some believe that it’s something that can be “snapped out of” through sheer force of will. There is no scientific evidence that it works that way. It’s often a long, slow slog out. That’s not to say that there aren’t actions one can take to help one out of a depressive state. It’s just that it’s much more than a snap of the fingers.

I talked some about generalized anxiety disorder yesterday. I am always wound up, some times more so than others. It takes a great deal of effort to relax, and even the pressure of trying to relax can crank up the anxiety. This might be the condition that plagues me the most on a day-to-day basis, because it most affects how I interact with people. Always people pressuring me to “take it easy,” “get a sense of humor,” and “relax” so that they can feel more comfortable around me, and all the pressure just makes it that much harder.

The last of the triple threat is something I’ve talked about some here in the past. It has a few names, including hypernychthemeral disorder and non-24 sleep-wake disorder. It’s a very rare condition that mostly affects blind people (which I am not). Though the medical community is not 100% certain of the cause, it is mostly likely related to how sunlight influences the production of hormones responsible for waking up. Basically, my body tries to wake itself up one hour later in the sleep cycle than it does for other people. So, whilst I sleep a normal number of hours (though at the high end of normal–10 hours–this has not been a concern to doctors), I naturally want to wake up one hour later and go to sleep one hour later every day, putting me on a 25-hour cycle. Thus, untreated, I cycle from being a day person to a night person back to a day person over the course of three or four weeks.

It took a long time to get a stable treatment regimen together. Most medications used to treat depression can actually heighten anxiety and, in my case, cause serious heart issues. And though the treatment of hypernychthemeral disorder mostly consists of an inexpensive over-the-counter medicine, it is the only known treatment for the condition, so until I had a proper diagnosis, I could not maintain long-term stability in my sleep patterns. Fortunately, in spite of the misdiagnoses, most treatments for bipolar disorder are similar to the treatments for major depression and generalized anxiety disorder. All along, it’s been a gradual progress of zeroing in on the best treatment for me, regardless of diagnosis. This makes sense, since modern medicine, for better or worse, focuses on treating symptoms rather than diagnoses.

My progress under my current regimen has been uneven but gradually improving. I’m waking up the best I have in my entire life. Problems that used to weigh me down for weeks or months now only bring me down for hours or days. I’ve worked on adding activities in my life to improve my mood and general health.

However, I also have a number of disability support services that aid my improvement. Mostly, I have two workers I meet with weekly who assist me in compensating for and overcoming my disability issues. Their support has been instrumental in my improved health, and the goal is to keep improving to the point that I don’t need their services anymore. I am well on track for that goal. It’s just going to take some more time.

No one should have to live under the pain of stigma, and if sharing my story can help someone to live a little freer, then I know I’ve done my job.

Trigger

Sunday was Mother’s Day. On Facebook, my friends traded out their userpics with photos of their mothers, and wrote glowing tributes. Well, most of my friends did. For other friends, Mother’s Day is not a happy. Their mothers have passed on and they miss them terribly. In other instances, my friends have strained relationships with their mothers, and for still others, my friends wish that their relationships with their mothers were good enough to call them “strained.” A couple of my friends shared their pain and grief on their walls, and in at least one instance, got chastised for it, which only added to the pain.

I had an idea for a Mother’s Day post for this blog, and I probably still will write it soon, since the idea is far more encompassing than Mother’s Day. But my gut told me to not write it Sunday, if for no other reason to acknowledge and honor my friends’ grief by abstaining.

If there is any consolation that at least some of my friends can take (I won’t presume all of them since I don’t know how everyone’s mind works), it is that they can see Mother’s Day coming. There it is, the second Sunday of May every year. They can brace themselves. But even then, they can’t really know what is going to trigger them, when, or how. There are 364 other days on the calendar when they can get walloped out of nowhere with pain and despair.

I have generalized anxiety disorder. I am always tightly wound. But sometimes, the smallest thing will send me for a loop and I’ll be in even worse shape. I freeze up. I feel like I’m going to throw up, except I don’t, and sometimes I’d rather throw up because I’d at least feel better after. My heart pounds. I get a weird fluttering sensation all through my body. My mind either bounces around all over the place, or fixates on one idea and spins through it over and over. I take anxiety medications, but they’re no magic bullet. Sometimes I am able to soldier through the day, and sometimes, my absolute best efforts to overcome the anxiety leave me either huddled in bed, terrified to even move, or stuck in front of my computer, endlessly zooming through the same cycle of a half-dozen URLs.

Yesterday was “one of those days.” It began as I awoke from a nightmare. Now, I almost always have nightmares, and in fact, they are the same half-dozen or so nightmares that I’ve had for the past five or ten years. It is important to note that every single one of these nightmares is based around past regrets. Because I am so familiar with the dreams, most mornings I can just bounce out of bed and start my day. But sometimes, the pain of the past leaves me huddled in bed for hours on end, convinced that whatever I can accomplish can’t possibly make amends for my failures. That’s how I spent the first two hours of yesterday morning.

At 5:00 pm yesterday, Governor Mark Dayton signed same-sex marriage into law in the state of Minnesota. This improves the lives of so many of my friends who are in same-sex relationships, some of them for decades. They’ve had some real issues when it comes to things like hospital visitation and inheritance rights that are now no more. I am ecstatic for them.

Yet the dread with which I awoke compounded itself over the course of the day. As happy as I was for my friends, I was sad for myself. A decade after coming out, I still have very limited and mostly disastrous experience with dating. I have had a couple of tepid relationships that had no chance of developing into something long-term. My friends have gradually settled into their grown-up lives with partners and families, and I see them far less. I am very alone and, unlike an Emily Dickinson-style introvert-writer, very much do not want to be. And that makes me even more anxious.

Yesterday, I was supposed to go t0 the first-tenor sectional rehearsal. I was then supposed to go to an abbreviated chorus rehearsal, after which we were to go to St. Paul to perform for Governor Dayton and several thousand other celebrants. I was to join my brothers in song in Twin Cities Gay Men’s Chorus to perform “Marry Us”, “Walk Hand in Hand”, and finally, “Love Is the Law” with none other than its writer, Chan Poling.

Supposed to.

Instead, I failed. In the grips of an anxiety attack, the last thing I can think of is going out in public and face the derisive stares my erratic behavior inevitably draws. But I failed the chorus–I had a job to do, and I let my medical difficulties get in the way, when I know there are choristers who are dealing with more difficult medical issues who attended and performed. I failed to support my many friends on one of the happiest days of their lives. And I failed myself, because I will forever be haunted by the fact that I could not get myself to participate in a once-in-a-lifetime opportunity.

I don’t feel any better today. I feel like I have the entire global population of monarch butterflies in my stomach. The only thing that is getting me going is the fact that tonight is the first night of my summer classes, and there is no way I can miss. School seems to be the one commitment I have been able to master even in the midst of my medical issues. In this, I am most fortunate. It bodes well for me if and when I attend graduate school. In one arena of life, I have wrangled this beast. I only wish I could do so in more. Perhaps I will yet.