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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.

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Synchronicity

I had planned all week to post yesterday regarding the one-week anniversary of OccupyMN.  But all week, I have been fighting issues related to my hypernychthemeral disorder, which always leaves me with having to choose either to let my sleep cycles run naturally, in which case it would take a few weeks to return to a diurnal schedule, or to take matters into my own hands by staying up a total of 36 hours or so and exhausting myself into an extra-long night of sleep, followed up by a “short” day and early bedtime, to help me get back to a diurnal schedule.  It’s a no-brainer.  I do not want to wait several weeks to live like everyone else.  I am glad, though, to have sat with this article in my head an extra day, because various seemingly unrelated events over the course of the week have unfolded to shape and reshape what I am wanting to say here.

I got back into town after my chorus’s retreat last Sunday, and one of the first things I did was to head down to Government Plaza in downtown Minneapolis.  This plaza, outside our county government building, has been renamed People’s Plaza by the protesters.  The scene looked much like what you see in New York City right now, and in many cities across the country.  There were a few hundred people present, a heartening number, but the first thought that crossed my mind was, how is this going to look when it is -30F out?  The numbers have already dramatically dwindled as our night temps near 40F.  I got to talk to some of the organisers and other protesters.  One was a lovely young man named Osha Karow, who was inspired by Occupy Wall Street to purchase the domain name occupymn.org and get the ball rolling here.  If you saw him casually, you would assume he fits the caricature with which the Occupy movements’ opponents paint the protesters: white, middle-class, and lazy.  But to hear his story firsthand broke all such assumptions, a young man whose life fell apart because health issues well outside his control usurped his education, his job, and (ironically) his health insurance to treat his very serious medical situation.  And, as I believe very much in the power of personal narrative, I believe that, behind each of these protesters that some are wont to dismiss, is a compelling personal story that has driven them to such actions as the protests.

There were some things about the protest I found truly inspirational.  I saw it pulling together diverse ideologies and perspectives.  I heard socialists and libertarians coming together for what they had in common, then taking the opportunity to engage each other in civil and meaningful discourse regarding their differences.  Those who claim that this movement is a mishmash of nebulous and unfocussed anger forget that the civil rights movements was a coalescence of different causes, different frustrations, different people.  I believe that this new movement can, in time and in much the same way, coalesce into something more focussed and more powerful.

But there is also cause for concern.  Though the protest is drawing participants and supporting passers-by from many walks of life, those in their 20s by and large are driving the movement.  They are committed to being “leaderless” and anarchic, but I wonder how much experience they’ve had working in anarchic situations.  There is such a fear of anyone taking charge of anything that even the most minor decisions are brought before the daily “general assembly”.  They do not understand the need to prioritise decision-making–that it is better for something small and minor to simply get done by someone, and that if every minor decision is brought to the general assembly, then there will be no time, and thus no chance to focus on, the major, long-term decisions.  This, I believe, is why the protests appear unfocussed to outsiders, and this lack of focus could lead to the premature demise of the movement.

When people do step up to take care of minor tasks around People’s Plaza, they are chastised for trying to be “leaders”.  These young people do not understand the difference between someone taking leadership by force, and someone rising to a place of leadership simply by being themselves.  The latter are chastised at the movement’s peril.  I cannot think of any significant social movement in history that succeeded without someone coming to the fore as, at minimum, a figurehead, if not a leader.  These historical leaders often rose to prominence despite their own personal desire not to do so.  But if those who are leaders by instinct are prevented from accomplishing even minor tasks, then this movement will sink in a mire of managing the mundane.

I am also concerned about the process of othering that has taken place.  Othering is the social force of determining “us” from “them”, insiders from outsiders.  The protesters feel justified in distinguishing “the 99” from the top 1% of earners, who control over 40% of the wealth in the United States, and thus, in many ways, control our day-to-day lives. They see “the 99” as the biggest umbrella term they can imagine, that pretty much anyone who they come across can relate to being in the bottom 99%.  But in creating this “other”, this 1%, they first distance themselves from some of those who sympathise with their plight, from high-profile billionaires who are quite vocal in wanting Congress to restructure our economy to benefit the 99%, to protesters who themselves come from the 1% and want to work with the movement hands-on.

Some critics of the movement claim that this othering process both smacks of sanctimony–the 99% are pure of motive, the 1% are inherently evil–and allows the 99% to abdicate their own responsibility in helping the economy to decline by, for example, building up untenable lifestyles through purchasing needless luxuries via “easy” credit, and staking claims and “rights” to a “middle-class” existence that is detrimental to the environment and to global economic development.  I am in full agreement with both these critiques.  I feel like the Occupy movement wants to build solidarity through a message of equality across races, religions, and (most) classes, etc, but they undercut their message of equality by stating, overtly and otherwise, that the 1% are ontologicallly, innately different.  This is why my participation in the protests has mostly been confined to a message of “love the 100%”.  I chant, “I have seven billion brothers and sisters,” and rattle off who all that includes, including those the left love to vilify.  I perform my song, “Love The Way You Hate Me”.  I challenge the notion that the 1% are fundamentally different at every opportunity.  I plant the seed, I get people to think.  And if “we are in this together,” then that means we must take responsibility for our mistakes, both individually and collectively, as well as seek to become part of the solution.

However, my personal belief that no-one is fundamentally evil takes a beating sometimes.  One friend of mine points out that my telling the 1% (or homophobes, or what have you) that I love them is like standing in a field with a raging bull charging me, and me offering to talk with the bull and give it a big hug.  (I say the analogy falls apart because I am a bull, too.)  But late Thursday night, I took pause.

My neighbours in my building enjoy watching what passes for investigative journalism today (think truTV, for example).  When I go to the TV room in my building, I can’t just change the channel, so if I choose to be in there, I choose to watch what my neighbours have on until I can change the channel per our community rules.  I’m glad they didn’t change the channel Thursday night.  They showed a recreation of the Jaycee Dugard abduction, imprisonment, and rescue.  To see all that Phillip Garrido did, the layers of deceit and evasion, the unfathomable abuse he laid upon an innocent child, to see how he built his entire life around this cruelty, it becomes almost impossible to separate the man from the acts.

Am I lumping the wealthiest amongst us in with Phillip Garrido?  No; my point is that my belief that anyone could be ontologically, fundamentally evil has been shaken, and thus leads me to question whether my belief that othering is in all cases wrong.  I discussed my principle with someone the other day.  He said that, a few nights prior, he saw a man surrounded by about a half-dozen scantily clad women whom he ordered away from him to go “do their thing” and to be sure that “he got his cut”.  Clearly, the man was a pimp.  My acquaintance remarked that, if he had passed by that man right after the incident, and the man tripped on the sidewalk and bloodied himself, my acquaintance would not have lent him a hand up.

Because I am processing the nature of evil, I am having to confront my own belief in the process of othering, and how it relates to the 99%/1% dichotomy.  I will say this: I have often compared money to alcohol–good and enjoyable in reasonable doses, but addictive, controlling, and destructive in excess.

There are those who say the protesters are spoiled.  In the Minneapolis Star-Tribune a couple of days ago, a commentator, a Tibetan immigrant to the Twin Cities, argued that Americans have the best standard of living anywhere, and that it was unpatriotic to argue otherwise.  She related her own harrowing personal story of what it was like for her family to escape from China to India, of how she was placed in an Indian boarding school with no idea of if or when she’d see her family again.  I will not argue that even the poorest Americans fare better than the average citizen in many countries, and I cannot disregard the woman’s story for a moment, as it has been relived countless times by immigrants to America over the century.  But (speaking as someone who last had ancestors come to America over 200 years ago–some by force), I cannot understand how it is unpatriotic to say that one’s country has the ability, resources, and potential to improve itself, to have faith that it can do so.  Those who chant the mantra that “the United States is the best country in the world” stand against quantifiable data: in terms of education, health care, and physical and technological infrastructure, amongst other arenas, the United States is not #1, or even in the top ten.  And the bottom 10% in a number of countries fare significantly better than the bottom 10% in the United States.  The United States can do better.  Some of us have faith that it can.

Will the protests effect change?  One friend believes that not only will they be ignored by those in power, that the gap between rich and poor will continue to grow, until mass homelessness and starvation lead to civil war.  I told him simply that I am going to fight against that eventuality.  I fully believe that the era of the American Empire, like all empires throughout history, is ending.  The difference will be whether the empire will go out in a fizzle or a bang.  A fizzle would mean a cutting back of military and world economic dominance, resulting in a refocussing of those resources into education, health care, and infrastructure–in short, an acceptance that there are much worse things than being #2.  A bang would be my friend’s scenario: chaos, destruction, and war.  I daresay almost any of us would prefer the fizzle to the bang.

So I will back the protests, though still in my contrarian way, because I believe it is unhealthy and unwise to “stand against” the 1%, for they too are my brothers and sisters, I want good for them, as for the protesters, as for anyone.  What of my epiphany regarding the problem of evil?  My views, like the protests, are sure to evolve over time, and it is too soon to tell what they will evolve into.