Tuesday, March 03, 2015

Shaking Hands with the Devil for Health's Sake

I write about my disability regularly because I don't want it to remain invisible. Within the disability movement itself, there are distinctions based on means of perception none of us can control. The man who lives downstairs from me has a clear and visible disability, completely undeniable, just as prominent as his harsh Boston accent with its hard, almost percussive A's. He finds it difficult to go up and down stairs but, like each of us, fights his limitations every day and does what he can.

The man in question shuffles upstairs and downstairs gingerly, slowly, but with great purpose. He walks with the aid of a cane, but is too proud to accept anyone's charity or sympathy. Those who seek to be helpful and hold open doors are greeted with a disapproving stare and grunt. Out of my way, he says. As for myself, I've been too proud myself to let bipolar disorder sideline me for very long. Today I feel really awful, but I want to share my words and thoughts. I never was the type to want to lay fallow.

Speaking about mental illness is now acceptable conversation. For that I am extremely appreciative. Ideally, I wouldn't have to explain myself, but I'd rather educate others than let the details go otherwise unnoticed. The disabled community is broad and expansive, and yet I find myself disinclined to identify myself fully with that movement. I often view a motley gang of cranky people, each feeling resentful in a slightly different way for a slightly different reason. Each of us expresses pain in different ways and everyone has a horror story to share. If I wanted to, I could add my voice, but I will refrain for now.

I could feel resentful at lots of things: insurance companies even post-Obamacare, clueless doctors, and death by a thousand cuts, the innumerable headaches caused by mutual misunderstanding of an unnecessarily complicated system. And yet, I would rather live with the hand of cards I was dealt than rage against the light. I already live in Protest Central, also known as our Nation's capital, and I doubt the presence of thousands of wheelchairs and motorized scooters descending on Capitol Hill would do much good. What is needed is funding for better medications, better treatments, more effective rehabilitation.

Back to my own story. Tapering off of one antidepressant to get onto another was an unpleasant experience, one concluded yesterday. Most antidepressants give marching orders to the soup of neurons located in the brain. These commands tell the neurons how to line up, how they ought to behave, and a variety of other directives. For reasons unknown, my brain does not produce enough of three primary and very essential chemicals. They are, in no particular order, serotonin, norepinephrine, and dopamine. Each antidepressant works slightly differently in where it places its focus. Some work mainly on serotonin, others target dopamine receptors.

Twenty years ago, the first SSNRIs like Effexor or Cymbalta were developed. I was one of the first to try them. At lower levels, serotonin was boosted substantially. But at higher doses, if needed, so too was norepinephrine. One of the major drawbacks of this class of drugs was that discontinuation syndrome was extreme and led to many having to be hospitalized to completely wean themselves off of the drug. That very nearly was the case with me and it took psychiatrists several years to realize how intense discontinuation syndrome was for those who'd been on the medication.

Now I'm on an MAOI inhibitor, a very strong and effective drug with some unfortunate food interactions. It's in the form of a transdermal patch called Emsam, which cuts down on the reactions considerably. Because it doesn't pass through the GI tract as a pill would, absorbed through the skin instead, I don't have to worry about eating a tiny bit of something verboten and causing a hypertensive crisis. I've had three hypertensive crises already and don't want to have another. During them, my blood pressure and pulse reached dangerous levels and each spike came in terrifying waves, one after another.

As much as I dislike capitalism, I find I have to work within its confines. Though I can't believe I'm actually saying this, I would prefer to work within the system. New treatments for mental illness are expensive and time-consuming. What we have already is fine for some and insufficient for many. I don't want to entertain this argument, but I may have no choice but to strike a Faustian bargain. The more money Big Pharma makes, the more money it can allocate towards the research and development of more effective medication. I think it's completely ridiculous that a 30 day supply of Emsam should cost $1200 out of pocket, but I'm sure the manufacturers' accountants can come up with substantial justifications and rationalizations.

In this situation, I would rather work within than outside. Though I think a system of socialized medicine would be fairer for everyone, I can't fight the views of many Americans, who fear big government and Washington, DC, telling it what to do. A for-profit system at least rewards those who come up with the next big thing. Hopefully, that next big thing will be a new antidepressant, one without potentially fatal side effects. I know for a fact that new treatments are underway, but everyone's waiting on the next big breakthrough. Let it be soon.   

Sunday, March 01, 2015

Quote of the Week

"I feel like the boy who stubbed his toe in the dark - I'm too old to cry, but it hurts too much to laugh."-Adlai Stevenson, paraphrasing Abraham Lincoln

Saturday, February 28, 2015

Saturday Video

They told you in school about freedom
But when you try to be free they never let ya
They said "it's easy, nothing to it"
And now the army's out to get ya

Sixty nine America in terminal stasis
The air's so thick it's like drowning in molasses
I'm sick and tired of paying these dues
And I'm finally getting hip to the American ruse

I learned to say the pledge of allegiance
Before they beat me bloody down at the station
They haven't got a word out of me since
I got a billion years probation

Sixty nine America in terminal stasis
The air's so thick it's like drowning in molasses
I'm sick and tired of paying these dues
And I'm sick to my guts of the American ruse

Phony stars, oh no! crummy cars, oh no!
Cheap guitars, oh no! Joe's primitive bar... nah!

Rock 'em back, Sonic!

The way they pull you over it's suspicious
Yeah, for something that just ain't your fault
If you complain they're gonna get vicious
Kick in the teeth and charge you with assault

Yeah, but I can see the chickens
coming home to roost
Young people everywhere
are gonna cook their goose

Lots of kids are working
to get rid of these blues
Cause everybody's sick
of the American ruse

Well well well, take a look around!
Well well well, take a look around!
Well well well, take a look around!
Well well well, take a look around!
Well well well, take a look around!

Friday, February 27, 2015

The Travails of a Modern Day Writer

I minored in creative writing when I was in college. If you looked at my transcript, it would say English, but I was given the freedom to take multiple writing workshops. I wasn't asked to enroll in more than a few literature classes, which I usually enjoyed. My primary training was as a poet, a discipline I have set aside completely, since it no longer speaks to me. Poetry is consigned to a limited audience as well, which is part of the reason I no longer obsess about publishing a chapbook that will sell a total of 400 copies and no more.

My most current frustration is with the process of publication. One particular literary journal likes a particular short story, but has insisted upon a full year's worth of revisions. The topic is a first-person account of a transwoman. What I have crafted is entirely fictional on one hand, but I've relied heavily on the personal anecdotes of other transfolks I have met over the last several years. I've always envisioned writing fiction as a means of taking truthful bits and pieces of a life and creatively putting them together in whichever order best suits them.

The editors and readers are of a very different generational and political mindset. Transsexualism in any form is foreign to them, and I've had to excise whole portions of the manuscript that I would much prefer to keep. I have, as of this moment, minimal cache as a writer. The editors hold most of the power and I have no choice but to make the changes they request. I don't think I'm being exploited in any way, rather that what I write is too foreign and remote for some.

I've removed the first two pages with reservations. I want my main character to feel guilty and remain partially closeted from start to finish. If I had a greater publication name, I'd be able to keep those sections intact. Still, I have to admit that most literary journals and publications would have cast me aside without a second thought if what I wrote didn't fit their needs. What I dislike is that the date of publication has now been moved back to August, since most periodicals publish only twice a year.

For aspiring short story and memoir writers, my advice is to develop patience. The largest unwritten rule is that every publication has a particular style and subject it favors. Knowing that, one can try to write in accordance with their guidelines, or recognize the futility of the gesture. The latter is true for me. I've been able to rule out several publications who will never accept my style. I'd rather be myself than try to mimic a particular format.

I took several journalism classes during undergrad and found the grammar and rules to be restrictive of creativity. Once, I recall being required to write a standard newspaper lead, a fairly basic assignment, which I did in a very unconventional sense. The professor liked the finished product, but noted that he would never be able to teach the way I did it. Even in an electronic content era, I think there will be always be a need for people who have mastered specialized formats.

I am not one of those people. This is why I didn't take more than a handful of mass communication classes. I found the theories fascinating, but not the work that went into it. If creative writing has a tragic flaw, it's that it claims to encourage original voices and new directions, but it is instead under the control of picky people with very specific parameters. I've found that beginning creative writers are often under the delusion that anyone can write and that eventually someone will notice their genius.

Unless a person has substantial solid connections, luck is as much a factor as talent. Much like attorneys, there are too many writers and not enough slots to fill. The process resembles applying for jobs in a challenging and competitive market. I'm thankful for what I've achieved already, but it's only a fraction of what I thought I could achieve at the outset. I wish this wasn't so.

I have confidence in myself. I know I'm a good writer, but the problem is that I'm surrounded by many other good writers. As mentioned above, I don't have the kind of elite academic credentials that are an inside track to greater success. If I hadn't gotten severely sick my last two years of high school, I would have been on track to go somewhere prestigious.

I'm almost exclusively self-taught at this craft, and my college classes have been minimally helpful. I've had to learn a brand new language without anyone holding my hand along the way. It gives one a degree of pride to be a literal self-made man, but a substantial feeling of resentment in the process. I had to make every ounce of this myself, from scratch. No one gave me anything. That recognition and grudge keeps me working hard, even if it encourages biases that may be unfair to their audience.

Tuesday, February 24, 2015

The Poster Child of Gender Dissonance

Because I'm feeling a little emotionally vulnerable due to medication withdrawal, I'll risk a topic I usually consign to the proverbial recesses of my mind. My bisexuality is only one aspect of my identity, mostly processed and put aside, but gender identity is still quite tender, not entirely resolved as yet. I have to thank feminists of my own generation for their hard work in publicizing transgender topics and raising their voices for the sake of fairness. They allowed me to find myself in the midst of tremendous confusion and self-loathing. For a long time I thought of myself as hopelessly eccentric, unable to achieve normality for reasons I could not understand.  

Today I feel stretched, my notion of acceptable physical self expanded beyond previous boundaries. I found a website yesterday that showed real, authentic transgender pornography. Maybe it's not that odd that valuable lessons can be learned from visual representations of sexual contact. One particular site focused almost exclusively on transwomen. I looked on with a combination of fascination and a very guilty arousal. Though I established for myself a while back that transition was not what I needed, the video I viewed allowed me to recognize what I would have become if I did.

I'll say this. It seems like a tremendous amount of work, especially for someone like me who presents in such a masculine fashion. Due to borderline high blood pressure, I have an EKG done every six months at the cardiologist. In order to get the electrodes to stick to my chest, a certain portion of my chest hair must be shaved first. When I was in college, I often frequented drag shows at the local gay bay. I saw the diligent work done by each performer to remove body hair and pass for female, knowing how time consuming it would be for me. What we might call high femme (traditionally feminine) cisgender women think nothing of taking hours to make themselves up immaculately, and to an extent the same was true here. 

Some time ago, I hooked up with a man I met at a club. I hope you don't mind, he said, but I do wear panties. I knew his own shame and I remember I even smiled at his honesty. I took great relish in informing him that I did the same thing myself. He relaxed, instantly. I'm a movie buff, and it saddens me to see how many pejorative references there are in films to men wearing women's underwear, scornful language reducing them to emasculated sissies, not fit to be called men. For reasons like these, I never have felt comfortable identifying as male, though I know I do present as such based on how I was socialized and how I looked upon exiting the womb.

With the anecdote I've just mentioned, I have to say that the experience we had together was sexually underwhelming. Even so, recognizing that I was not alone meant more to me. The two of us had an informative and comforting conversation afterwards that I never expected to have with any other person. Gay sex is another target of male homophobia, the basic concept being that being penetrated in any form is only for women. Men shame each other in certain ways and I've learned, also from feminists, that women gender police themselves in many other ways. 

The only thing that bothers me about transgender issues as currently presented is that they are rather limited in scope. I'm comfortable among white, well-educated, middle class people like myself, but this is very much the status quo. I have to say I wonder about the transwoman or transman who has no clue what terms like gender non-conforming or gender dissonance even mean. They may not realize that surgery is an option, provided they can afford it. They may not have a comforting set of vocabulary words at their disposal. And if they are of a racial minority or religious minority, they may incorrectly assume that they're the only transgender person of color or of faith out there.

I bet not all of the readers of this post understand the complexities present here. It has to start somewhere, but knowledge must eventually reach marginalized people. Sometimes this happens in a very natural, organic sort of way, but sometimes exclusionary attitudes are never challenged. Sins of omission characterize most people who seek to do good but fall short. Sins of commission, by contrast, are often those of intolerance, but they are easier to identify and attack. Let us always challenge ourselves to be better allies, so that enlightenment is not only for the well-informed, privileged, and highly educated.

Monday, February 23, 2015

Winning Friends and Ignoring the Rest

Earlier last week I wrote about a Quaker resource center in DC, William Penn House, under threat of closure. Since then, it has been established that the real culprit here is a local government bureaucrat with a grudge. Four years ago, William Penn House won a ruling against him, and he is now bitter enough to force round two. Thankfully, the basic functioning of the center will not change and most will remain as is.

An unscientific survey of the comments and words of advice I received was quite telling. Half of them supported our cause. The other half felt that we were benefiting from an unfair standard, that we were somehow gaming the system for our own advantage. This is worth further analysis, because the roots of these strong opinions reveal more than one single Quaker House fighting for its property tax-exemption.

Some of the people who commented or sent me e-mails resent the taxes they already pay. This is the case either for themselves and their families individually, or perhaps even for a business they own. Many don't believe that any house of worship or faith group should receive tax-exempt status. As is so often the case, those of us who are religious liberals have to try to find some way to counter the sins of religious social conservatives.

The behavior of televangelists and hypocritical bigots, in particular, have soured many people. I know of a particular ex-Catholic who harbors such contempt for the Roman Catholic Church that she has gone as far to have her baptism revoked. Likewise, some conservative churches and faith groups have made no pretense to be non-partisan in their services and programming. But this resentment goes a level deeper than that. Many Americans are soured thoroughly with organized religion, seeing only its worst qualities. This breaks my heart more than any of the minutia and the petty politics.

If we as Quakers do not conduct our business in a thoroughly religious, spiritual fashion, then our critics have a point. We don't deserve tax-exemption. But to eliminate that discrepancy, we must eliminate the squeamishness we have as a faith group about outward, public displays of religiosity. In some ways, we're in a bit of a double bind. If we use the language of God talk, we're bound to have certain hearers make incorrect, negative assumptions about us. But if we are too private about our religious beliefs, as we often are now, we risk being misunderstood or, even worse, reduced to irrelevancy.

And this is where the situation lies at the moment, frozen into paralysis. There is, sad to say, a limit to what anyone can do. The bitterness that results from polarization and gridlock makes it seem that caustic defiance is the only sensible point of view. Our course of action is to look beyond, to know that pessimism and optimism are both truths with a lower-case t. Furthermore, the cynicism of our times, as I have mentioned before, is really a kind of spurned romanticism flipped inside out. Causes and systems of belief have broken our own hearts as effectively as any former lover.

Leading by example is the only real option that remains. We are the sower of Jesus' parable. Some seeds land on rocky ground and go no further. Others come to rest in soil that is not deep enough to sustain further growth. And some, as we will understand from our hard work, are lucky enough to grow into strong, supple plants.

This application is true for any group motivated by idealism, but easily led into frustration with hypocrisy and injustice. Those who grab hold of our message and remain in our company are often relatively rare, but we should always set a table of gratitude and welcoming attitudes before them. We should see them as they are, fellow pilgrims.

Sunday, February 22, 2015

Quote of the Week

"I conceive of God, in fact, as a means of liberation and not a means to control others."-James Baldwin