Monday, October 24, 2016

Birthday Post

Hello Readers,

Today I turned 36. I intended to share lots of pithy, sage commentary for today. Instead I discovered that this hotel charges $15 per day for internet service. I'll eat the cost, but the principle of the thing gets to me. As I tap these words out to you, I'm staring out the window into downtown Atlanta, watching rush hour traffic slowly unclog and the sun beginning to set. I once lived here, ten years ago, and left profoundly dissatisfied. Little did I know I was a mere two years from leaving the South forever and moving to Washington, DC.

I really dislike early flights because I inevitably leave behind something (or more than one critical thing). This morning I left behind two crucial medications. One of them I was able to get filled at a CVS across the street, that is after somehow navigating the connecting tunnels that lead to shops and food courts adjacent to the city's downtown high-rent hotel district. The second medication is a controlled substance I likely will not get filled even tomorrow, and perhaps not at all. It has give me the opportunity to sleep restfully at night and I'm upset to likely be without it for the next five days.

My childhood best friend lives here, but we have been estranged for a decade. We tried living together, an arrangement of convenience which has proven to be the undoing of even the strongest bonds of friendship. He is married now, quite happily, and has a two-year-old child. I extended the olive branch towards him this afternoon by way of text message. He's kept the same cell number for over ten years. He responded, favorably, and if our schedules sync, I'll meet him for lunch either Wednesday or Thursday.

It is difficult to overstate the impact he made upon my life. We were both loners, or at least extremely socially awkward and anxious enough that we had few friends other than each other. In our childhood, we ran pell-mell into creek beds, woods, and the occasional half-finished Eagle scout project. When we were not outside playing games of sport, we fired up the Nintendo. After video game designers started making advanced machines with more than four buttons, I was no longer coordinated enough to participate.

I made the first serious trip without adult chaperones of some sort in his company. We went to New York City, a place that still intimidates me and likely always will. He mastered the subway map, I mastered communication with women from across the world. I felt very adult and worldly, but hadn't even really started to live. We went to concerts together, we smoked cigarettes together, we pushed boundaries as every adolescent does. And now we will meet again.

I used to try to hang on to birthdays as long as I could. Now that a birthday is fading away into the next one to follow, I feel that same sort of desperation. There is no way to freeze time. In four years, I will be 40, an astonishing life accomplishment. If you knew me twenty years ago, you'd be surprised I even lived long enough to make it. No need to retell that story. The best ones to come are yet to follow.

Sunday, October 23, 2016

Quote of the Week

To me, clowns aren't funny. In fact, they're kind of scary. I've wondered where this started and I think it goes back to the time I went to the circus, and a clown killed my dad.- Deep Thoughts by Jack Handey.

Saturday, October 22, 2016

Saturday Video

Thanks to everyone for everything
you've done but now
It's time to go

You know it's hard
We've had some fun

But now the moment's come
It's time to go

Who could ask for more?
Who could ask for more?

Thanks to everyone for everything
you've done but now
It's time to go

You know it's hard
We've had some fun
But now the moment's come

It's time to go

Who could ask for more?

Wednesday, October 19, 2016

When Transgender Became Real for Me

Nearly twenty years ago, I was a freshman in undergrad. As part of my major requirements, I took several history classes. In time, I drew the attention of a woman seated on the opposite end of the classroom. She flirted with me and I responded in kind. Though she ultimately intended to tell me herself, she must have made it quite plain to others that she had a crush on me. It turns out that our professor got to me first. Quite by coincidence, he happened to drive by me while I was seated outside of a Blockbuster Video store (remember those?) and shared the news. I was flattered that she’d thought so highly of me and contacted her by phone, in the pre-text messaging era.

Plans were made to meet, to see if we were compatible. I had high hopes. At the time, barely twenty years old, I was still living at home. My grandparents had been present with us until they passed away, leaving behind a basement apartment that my father had built specially for them. It was a space that I now repurposed as my own.

The date arrived. After a pleasant day of sharing company, I steered the two of us towards our final destination. She was not opposed to a private display of affection. Yet, in the middle of it, she told me emphatically that we needed to stop. Aware that she was very uncomfortable, I did as requested, but felt rejected and confused. Nothing like this had ever happened to me before and I wasn’t sure how to take it. Was there something wrong with me? I reflected for several days how disquieting and jarring the experience had been, but took it mostly in stride.

One might think that this is the end of the story. Strangely, it wasn’t. The affection and fondness we’d initially felt for each other never subsided. Though I expected us to part ways forever, she wanted us to remain friends. That was easily done, except that the sexual attraction between the two of us never dissipated, either. As best as I could reckon, she might have had issues with trust and intimacy. But at any rate, we’d at least tried it and found that it wouldn’t work for us.

A few weeks later, I saw her outside of a big multi-plex theater on yet another date. We exchanged pleasantries and parted ways. She said that she was continuing to seek available men, but never seemed to find one she wanted. A few months later she dropped the bombshell announcement that wasn’t. She finally came out of the closet as a lesbian. Now she was seeking available women.

The news did not shock me, and confirmed neatly why I had been rejected. It wasn’t the first time that I’d seemed like a good compromise measure to a closeted lesbian and I was not devastated. Shortly thereafter, she found a girlfriend, with whom she is, I’m pleased to say, with this very moment. And yet, the attraction between the two of us never really faded into the black. It went beyond a mere platonic familiarity or a fond memory of a different time. I was still attractive in her eyes and she plainly let me know it. This was perplexing in a different way.

A note: before I go any further, be aware that I’ve made a deliberate choice with my use of pronouns. I’ve used the feminine until now because, when I knew him, he identified as female. Front-loading this crucial distinction would have ruined the effect for those of you reading this, assuming you hadn’t already guessed it. From now on, I will use masculine pronouns.

As I said, strong feelings for each other never really expired. Even before he went through transition, the regard we had for each other didn’t disappear in a puff of smoke. They were real. She had always been he. We had always been interested in each other.

Eventually, I received the full story. He told me that he had felt uncomfortable with his own gender identity, which produced the earlier, visible awkwardness. I appreciated the greater context, which inspired me to begin learning about transgender topics, identity, and the politics that surround it. They continue to this very day. I have learned much already, but in many ways I haven’t even scratched the surface.

In the beginning, I’m sad to say that I associated transgender in my own mind as merely a sexual kink. I shrank back from it a little, but knowing someone in my own life went a long way. What made my basic comprehension easier was his own deliberate choice of maximum visibility. He determined from the beginning that he would put his transition on public display, day by day, week by week.

I followed up with him step-by-step as he saved for the money for top surgery. I observed the slow, but inevitable progress of each day by way of YouTube video. I hoped and wished along with him that testosterone would be as effective as possible. I celebrated with him as he developed more masculine features, resembling the way he’d always wanted to look physically. But along with these developments, I also experienced vicariously the angst and pain of informing two transphobic parents. His decision was often a lonely one.

Now I am pleased to say that he is a well-regarded professor and transgender activist. Some months ago, he recorded his first TED talk. Being such a highly visible face is a courageous decision. His honesty has given me and others the ability to understand in concrete, not abstract or academic ways. I’ve seen him grow up in front of my very eyes. When I knew him, he was not nearly as empowered or self-confident. His example has inspired me to stay honest and dare to be vulnerable with the outside world.

And then there’s something else. Like a lot of queer men, my gender seems to fall somewhere between male and female. Though there are times that I feel more female than male, gender reassignment surgery has never felt fitting. Skeptics might call my notion of split or unresolved gender identity into question, but I can only offer myself as proof. Being some distinctive and absolute flavor of LGBT is a notion that has never sit with me well. Being able to check one box or the other would be convenient, even preferred, but to deny who I am would be unfair to myself.

Above all, I’ve learned from him. He has validated my own inward struggles and at times almost paradoxical sense of myself. Even though he’s changed his body, his regard for me has never gone away. The operation he underwent did not remove his fondness for me, nor did it drive a wedge between us. That might be the most profound realization I have uncovered with time. No physical change could ever replace our history together.

Past behavior remains persistent fact, revealing much about how we feel about who we are and what we have become. But, good or bad, we have to live with it and we have to live with ourselves. We may rebel against the environment in which we were raised, or the gender expectations of where we started out, but we have to make our own way. His way is my way. His struggle is, in large part, my struggle, too.

Sometimes the path in front of us has never been cleared. If we are lucky, we can rely upon the roads and byways that others have made before we arrived. At times, we must bushwhack and hack our way through thick underbrush and challenging circumstances. The journey we take is both a public one and a very private one. It requires careful discernment, patience, dexterity, and humility. To be brutally honest, no one’s experience comes easily or without trial and error. Such is life.

Sunday, October 16, 2016

Grief Counseling for In-Laws

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.-Isaiah 41:10

The above verse is enclosed more for my partner and her family than myself. My regular readers have recognized I've taken an extended break from writing. This is due to a death in the family. When informed that my partner's mother was close to death, I dropped everything. In a matter of a few hours, I became my best task-oriented self in a short period of time. Mail needed to be held for a week. Transportation plans were scheduled. My obligations were cleared for several days consecutively. Now I have returned home and taken on my regular routine, but nothing is really routine yet. It may never be quite the same again.

In-laws sometimes aren't sure what to do when tragedy strikes. I write this post today to see if I can make sense, theologically or otherwise, of precisely what has transpired. My role in the proceedings has been loosely defined. Our societal institution of marriage or long-term partnership, whichever you prefer, is a kind of artifice. It's a way that we seek to consolidate families who are not related to us by blood or proximity. Even in the best of circumstances, it's a stretch.

But don't get me wrong. My partner's family, for the most part, is fond of me. Being mutually kind and polite was never much effort for either side. We only took one extended trip with each other, about four months ago, but didn't share close quarters for most of the time we were there. I find that having separate space is the key for survival at any family gathering. It doesn't take much spark to begin a raging fire of the kind produced by the inevitable friction of too many people in one room.

Most of the work was my partner's responsibility. As much as I tried to be helpful, there were particular tasks for which I was ill-suited. The fault was never my own. In its place, I have been mostly a passive observer. I admit that sitting by the bedside of a dying person for fourteen days solid would have likely tried and exceeded my patience. I'm not sure how my partner, her father, and her younger sister managed it.

My presumptive mother-in-law lingered in a comatose state far longer than hospice care nurses and doctors ever believed imaginable. I was beginning to worry that she would win a very dubious distinction in the Guinness Book of World Records, attracting the attention of medical science and incredulous doctors. There were several instances where her breathing become labored, ceased for a minute, and then mysteriously resumed. Back to Square One.

I kept asking myself the same question. Why does God, in most circumstances, set the time, date, hour, minute, and second of our lives? We can surely shorten and diminish the quality of our earthly existence, even up to and including suicide, but this situation was very different. My partner's mother died due to a very aggressive form of stomach cancer, which might have had a genetic component, or not. The cause has not yet been determined. In any case, first symptoms were experienced in January of this year, a diagnosis was made in August, and roughly two months later she passed away.

In the fourteen days she clung to life, the only analogy that seemed fitting was that of Jesus' agony on the cross. And yet, the torment and pain described in my first example was neither a sufficient explanation nor an accurate description of this situation. In those times, she was likely unaware of where she was or what she thought. It was the family who watched and waited and waited some more who suffered most. This is how I imagine it must have been for Christ's remaining followers who stood by the cross, to the bitter end, though they could barely lift their heads to observe their savior's imminent demise. Jesus knew where he was going. His followers did not know what fate faced them.

The process didn't conclude within hours, but didn't take weeks, gratefully. Some people die in the hospital, or hang around long enough to be transferred to hospice care. The human imagination, over the centuries, has surmised and postulated that in this time, souls about to transition are actively consulting with God, resolving long-held grievances, and generally working out the final transfer upwards and beyond. If heaven is anything like human-made bureaucracy, I imagine it might take 5-8 business days to process a person's claim. That might explain the delay.

Quakers are often ambivalent about the notion of heaven. I have never relinquished a very Protestant view of the afterlife, which has always persisted from childhood, even though I have never really missed outward sacraments like confirmation, baptism, and communion. Still, there are times where I walk into Meeting and wonder what happened to the draped and reverent colors of the Christian season. I feel the same way when the notion of heaven is conspicuously skirted past in Quaker theology. I take no offense, but I nonetheless feel a loss.

When it comes my time, should I be lucky enough to make it there, it won't bother me if everything is draped in purple. I always liked Advent. Though I don't miss singing hymns, I never felt that Friends had to throw out the baby out with the bathwater in being so austere. I wouldn't mind my entry to heaven being accompanied by a soundtrack, not strict silence, no matter how pious and pure it might be.

Where does a soul go when it is his or her time? Perhaps along the way she took a stop by her working class roots of North Texas, USA, almost Oklahoma. Tornado ally poverty with omnipresent Air Force Base were never enough for her in life. She pursued an academic's life, instead. Two years here, three years there, and then lucky enough to be hired, even lucky enough to make tenure. A skilled communicator, she taught students how to be heard, acknowledged, and taken seriously. She took time to listen and was beloved for her kindly ear.

Along the way, she married. It was a happy one, and produced two children, both daughters. The eldest daughter is where I enter the picture. Beyond that, I have only first-person accounts at my disposal, and I'm left with the feeling of one who has arrived late to the party, or perhaps transferred into a small school district halfway through high school. I was always given space to breathe, but I have a lot of catching up to do, and likely always will.

What can one really ask from a mother-in-law beyond considerate small talk and peaceful coexistence? We were cordial and friendly for slightly over seven years, and now she will no longer be present on holidays and quick trips to DC. My own grief will be less intense. I have enough cognitive distance to complete small tasks the family is too overwhelmed to contemplate. I hope I can be a beacon of strength and stability.

I entitled this post "Grief Counseling for In-Laws." As Lincoln wrote, "it is for us the living, rather, to be dedicated here to the unfinished work." No death is an end of and to itself. If we keep the memory of the deceased in mind, as well as their positive example, we preserve what is worth keeping. As it is written in First Corinthians: "so, my dear brothers and sisters, be strong and immovable. Always work enthusiastically for the Lord, for you know that nothing you do for the Lord is ever useless." This is especially so in the healing work left to be done. My work will be yours someday, too.

Saturday, October 08, 2016

Saturday Video

There's a lot to learn
For wastin' time.
There's a heart that burns
There's an open mind.

Look out for my love,
look out for my love.
Look out for my love,
look out for my love

You own it.
You own it now
You own it.

There's a weight on you
But you can't feel it
Livin' like I do
It's hard for you to see it.

Was I hurt too bad?
Can I show you daylight?
How could I be sad
When I know that you might.

Look out for my love,
look out for my love
Look out for my love,
look out for my love.

Look out for my love
It's in your neighborhood
I know things are gonna change
But I can't say bad or good.

Silver wings of mornin'
Shinin' in the gray day
While the ice is formin'
On a lonely runway.

Hydraulic wipers pumpin'
'Til the window glistens
Somethin' sayin' somethin'
No one seems to listen.

Men with walkie-talkies
Men with flashlights wavin'
Up upon the tower
Time reads daylight savings.

I'm home again to you, babe
You know it makes me wonder
Sittin' in the quiet slipstream
In the thunder.

Look out for my love,
look out for my love.
Look out for my love,
look out for my love.

Wednesday, October 05, 2016

Regulating Doctors Like Wall Street

As I've written about in times past, I'm disabled and manage several chronic illnesses simultaneously. I have been a resident of the same city and metro area for nearly a decade, which eventually grants a person greater insight, As a result, I’m beginning to see the overlap between doctors and hospital centers. No longer am I flying blind. I've learned of medical systems to avoid, individual providers to steer clear of, but I don't want to fixate upon nefarious people with sinister motives. I must rely on doctors to improve my health and quality of life, and, most of the time, I obtain exactly what I need. Ninety percent of doctors, specialists, and assistants who I routinely consult are consummate professionals and extremely skilled in what they do.

More about that later. My foremost fly in the ointment has little to do with face to face encounters in the company of those wearing white coats and stethoscopes. Getting medical records transferred in between hospital system is the most current bane of my existence. No matter how many times I sign consent forms, no matter how careful I am to squeeze my handwriting into impossibly tiny blanks, no matter how cautious I am to ensure that said forms are faxed and electronically transferred, most of the time the great link-up never happens.

This week, for example, though I shouldn't have had to do it, I made a deliberate, strong-willed, resolute decision to hand deliver a medical order from one system to another. In an hour and a half, I took off by cab to one hospital, waited, obtained the record I needed, and then sped rapidly across town to another treatment center.

For starters, finding the proper medical records department at the first hospital was not easy. The system in place, as I discovered, was comprised of two fully separate units. For whatever reason, a person or entity decided that utilizing a centralized single unit made less sense than sharing loose responsibilities with another. That said, these departments knew little about the other, aware only that the other existed, but not much beyond that. I could not obtain a phone number or physical address from either with a telephone call, meaning I had to go to both in person, madly seeking correct directions, bouncing from hallway to hallway, until I found the right one.

And then when I did reach the proper office, the overwhelmed man I confronted with a needlessly complicated problem flashed an undisguised look of great terror and confusion when I explained my situation. It was fortunate that the paperwork I needed was at least there. To be sure, it was buried within forty pages of assorted other documentation. I must confess I was still unsure I had precisely what I needed before I departed. Hustling to arrive at my final destination by the end of office hours that afternoon, I was gratified to discover that the doctor's order I needed was gratefully included.

Nothing quite like success. I had been afraid I'd be off on another wild goose chase, still no further to any resolution.

Underneath the frustration and delay, as well as the lack of transparency, there is an answer available of why this happens with such frequency. Naturally, it's not a highly publicized one, for reasons of public relations and sometimes plain ignorance. Though they perform an essential service for millions of Americans, hospital systems do not place a high priority on the competence and efficiency of their medical records departments. Most of these entities are understaffed, under-motivated, under-trained, and shockingly unaware of the particulars of the system.

Employees have no incentive to do a competent job and likely are not given needed training to read legalese and bureaucratic mumbo-jumbo. As I noted above, the paperwork required to obtain medical records is complicated and fussy. If completed incorrectly, even by a micrometer, doors will not open. Stalemate will remain in its place. Nothing will happen.

And here's is where I return to where I left off earlier. This is where the issue is transformed from inefficient to infuriating. I was diagnosed five years ago with sleep apnea. Medicare, my primary insurance, will pay for a new CPAP machine every five years. I should have been given a new model from the outset, but my insurance was charged the full price for an obsolete machine that was already a decade out of date. Perhaps the supply company in tandem with my doctor was trying to move inventory out of its warehouse.

If that's the case, the practice is not illegal, but such conduct does not endear itself to its customers. Since then, I've signed up with a new supply company who promises that they'll never treat me like that themselves. I'm holding them to that promise. We may be viewed by healthcare providers as customers only, but in our medical system, we ought to be seen as something more important: patients with fundamental needs. Our health is at stake, not our consumerist aspirations, nor our offerings to a disposable income. The sleep disorders doctor who prescribed my CPAP machine is, as I have learned, something of a mill.

Nearly everyone he treats is diagnosed with sleep apnea, no matter what results a sleep study reveals or does not reveal. I'm having his business practices investigated within Medicare itself, because he may be running a racket, or he is at least not being held accountable for his slight-of-hand tricks. Ninety percent of the doctors I have seen are highly competent, hardworking, and ethical. But along the way I have encountered a handful whose practices are, if not illegal, certainly unethical. I think of the primary care doctor who would only phone in prescriptions outside of office hours (that is, on Saturdays and Sundays) for a $150 flat fee, regardless of the severity of illness or discomfort.

The same provider ran every single test my insurance would cover, and at each visit, whether I had a sore throat or a hangnail. Most, if not all of it, was highly unnecessary work. Instead of receiving a two or three page summary of results, I'd be given fifty or sixty pages’ worth.

I will obtain my new CPAP machine in February of next year. That is when I am due for another. But in the meantime, I have to manage with old parts that need to be replaced, but cannot be obtained. The only way I might be able to receive what I need in the meantime is to contact the manufacturer myself, but that does not guarantee anything. Fifteen years out of date might as well be half a century these days.

Learn from my lesson. Be your own advocate. We don't have to treat every doctor and medical system with suspicion, but we need to scrutinize those who don't pass the sniff test. If it seems wrong somehow, it likely is. No matter what reforms are proposed, passed into law, and then enacted, our healthcare system should never be confused for a benevolent single-payer, socialistic model. And even if it were, those with the financial means would willingly pay for superior, specialized care.

No reform will ever prevent some unscrupulous doctors from padding their own pockets. What makes the American model as it currently exists that much more dangerous is the lack of what we really know about our own care. Designated surrogates that separate providers from patients disguise how money changes hands and how business is really transacted.

One has to dig hard to expose the truth, then stomach the full knowledge of what really happens. We need to avoid the instances where our attention is diverted elsewhere, like a skilled conjurer, and where we are kept almost completely in the dark. If it takes time away from our busy days, we have no choice but to be our own regulators, and sometimes to regulate the regulators. Doctors are not hot-shot real estate investors or hedge-fund operators, but they should never be seen across the board as nice people with hearts of gold. There's too much money in the game and too much profit to be made.