Part One

I think a certain degree of caution and discretion is necessary when homesteading the great frontier of the Blogosphere. One should speak responsibly as words can be scrutinized by anyone, and for any reason. I don’t think blogging is a good venue for posting one’s journal either. Some topics are best left to the diary and not as fodder for public scrutiny. But with that, personal experience is at the end of the day our most valuable asset. It is the one, indestructible commodity that we earn in life, and I’m a firm believer in sharing these assets. I guess that makes me a “life experience” socialist, because I don’t think hoarding our experiences is the responsible thing to do. I believe we all have the obligation to quite simple, try to make things better.

So with that, I have a story to tell. It involves the medical and legal industry. It’s a personal story that was years in the making. Since this is a long tale I’m going to break it into three segments. It’s a story of hard earned knowledge, and in the telling, I hope to help others avoid this juggernaut, and the peril of candor.

Juggernaut, noun.

1. an idol of the Hindu god Krishna, pulled around on a huge car. Devotees of the god are said to have thrown themselves under the wheels to be crushed to death.

2. (Figurative.) Also, juggernaut.

a. something to which a person blindly devotes himself or is cruelly sacrificed.

Ex. that remorseless juggernaut–"the needs of man" (Thomas A. Edison).

b. a frightening, invisible machine, force, or other agent, that destroys anything in its path.

3. (British.) juggernaut, a large, heavy vehicle, especially a heavy truck.

Part 1: The Doctors

This is a tale of caution. The intent is to enlighten, to entertain, maybe outrage, but above all I suppose it’s a bit of a therapeutic purge; I want to shake off bad hoodoo. But there’s another motive, and that’s the aforementioned legacy of good advice. I hope to do good work by means of imparting good counsel via experience hard won in a prolonged encounter with the American, for profit, health care, pharmaceutical and legal industry.

I know. Who hasn’t had a dust up with the Money Inc(s) of health in the good ‘ol USA? Well, maybe more people than I think. Given the volume both in number and decibels of those who are fighting change, there seems to be a fair amount of satisfaction out there. But, that’s another story. Personally, I suspect the tried and true principle of “better the devil you know” has been exploited with these folks.

The following should not be taken with a grain of salt, an objective eye, or diminished in any way by those fortunate enough to be the recipients of good luck, good insurance, and good health. It should not be dismissed as another Boogey Man story told by a bitter and sore loser, though if hard pressed I don’t think I could in good faith completely and legitimately disown those adjectives. But, what happened to me could surely happen to anyone, and rest assured, it’s with that knowledge that I ask you the reader to brew, ice, or mix the beverage of your choice, sit back, read and take note.

In the scheme of for-profit American health care, this story just may not be an aberration.

Finally, it’s important to say I don’t intend to impugn the entire American health care and legal system. Good people make huge sacrifices and contribute to the higher good when they choose medicine or the law as a vocation. Miracles occur daily in the discovery and application of new drugs, and ours would be an unthinkably grim existence without these things. Healthcare and the quest for quality and quantity in our time here on earth is an unstoppable juggernaut. And therein lay the problem: As is the case with all juggernauts, occasionally a victim is trapped and crushed under the wheels of a relentless mechanism.

I still have hope that an “off” switch can be designed, implemented, and utilized in case of emergency.

As is the nature of many accounts, the events are true and described with as much accuracy as possible, though, as the expression goes, the names have been changed to protect the innocent. In this case, the innocent would be myself, sheltering from further blowback as I attempt to rid myself of bad karma with good, and bask in the cleansing action of a good, written rant.

Eight years ago, I stood behind the jewelry counter of my small, barely profitable but highly beloved American Craft Gallery in a mid sized southwestern city. Creaky, spongy wooden floors that dated to the original Spanish inhabitants of this near ancient structure plagued the gallery, housed in a historic building in the old downtown area. Those floors were a delight to the tourists, and a nightmare to those attempting to display hand crafted glass on a pedestals. Even a small child crossing the length of the gallery could cause a rippling sway, much like prairie grass, to the glass festooned display pedestals. There was however one big advantage: It was impossible for someone to sneak up on you.

I heard Katy, our main sales force and girl Friday coming my way. I continued my task as the steps and creaks grew in volume. She had the phone in her hand.

“It’s for you. It’s the doctor.”

I’d been so deeply engrossed in inventory that a few seconds had ticked by before I realized the nature of the call. Several weeks earlier I’d requested a thorough physical, for even though my insurance did not cover such luxuries, I felt it necessary to address a niggling doubt: the result of blood work from a previous physical examination.

It seemed that earlier exam demonstrated an extremely healthy display of laboratory results with one exception: there were slightly elevated liver enzyme levels. I was assured these levels were within a range of little concern, yet, I was, concerned. As a gay man who’d witnessed the worse of the gay plague, I’d developed a slight case of hypochondria. Every bump, every bruise, every errant cough was suspect and a potential precursor to a hideous and degenerative outcome. Therefore I took no chances, and like every responsible gay man of the times, I screened myself for all the nasty viruses as often as my nerves would permit. This then was one of those calls: an electronically conveyed voice would in a few, brief moments, give me a thumbs up, or a thumbs down.

I smiled at Katy, hoped my face hadn’t turned the color of the notepad on which I’d been scribbling, and took the phone.

“This is Dr. Smith’ office. Is this Kurt?”

“It is.”

“Hi Kurt. This is Melissa, Dr. Smith’ assistant. We have the results of your blood work. Everything looks fine, but there is one problem. You tested negative for hepatitis A and B, but you tested positive for C.”

“C? I didn’t know there was a C?”

This was before Hepatitis C had taken on the cause celebre, before it was the known commodity it’s become today. While it had been making the rounds, it had done so under my radar. How I, the aspiring hypochondriac, had missed the opportunity for so much potential worry fodder is still a huge mystery to me! But I digress. Melissa, the PA continued.

“Well, there is. I wouldn’t worry about it though. A series of shots usually takes care of it. When can you come in?”

As I hung up the phone an unbidden thought barged into my gray area and whisper-shouted. “Your life will never be the same.”

I have relived that moment and relived that thought countless times. It is one of those memories of such clarity I can still smell that musty old adobe gallery, see the hand carved soap stone Native American fetish in my hand, hear the street traffic and recall the shoes I wore that day as I stared at my feet for a good, half minute.

My life partner at that time was also my business partner. An interesting and convenient mix at best, it was also was the source of a fair degree of friction. Any couple in business together can attest to the challenges of such an arrangement. Working together, going home and not having work going along for the ride like dog poop jammed in the tread of your shoes, was a daily effort. But try as we might, work, often by necessity, would follow us home.

A business plan created by art majors, and the corresponding revenues as a result, guaranteed a monthly episode of nail-biting-overly-caffeinated-bill-paying sessions in which landlord, utilities, cam charges, payroll, taxes and vendors all vie equally with outstretched palms. This was unfortunately that day.

Jittery nerves were an anticipated result as the checkbook balance plunged during the course of this monthly ordeal. It was never a cheerful task, even though more often than not and by some miracle, there was enough left over to pay our own bills and our own forest of outstretched palms. Of all the days to get this news, this was probably the worst day of the month, so I chose to drop the bomb before we cracked open the checkbook.

“I got a call from Dr. Smith’ office. I have hepatitis C. You need to get yourself tested as soon as you can.”

It was with huge and profound relief that I wasn’t assailed with guilt, tears, or recrimination. A warm and comforting hug was the only response, and the words, equally reassuring.

“That sucks. I’m sorry. I’ll make an appointment tomorrow.”

And, that was that. The anticipated drama was avoided, but the reality of end of month billing was not so easily dismissed. Death and taxes are truly the only constants on this earth.

One week later we were both extremely relieved to find that our 18-year relationship hadn’t been an instrument in perpetuating a dumb ass virus. Jon tested negative.

“Dr. Smith said Hep C is very, very seldom sexually transmitted. It’s a blood to blood transmission.”

I noted the term “Hep C.” He’d already picked up the lingo. I also noted the obvious truism. Suffice to say my partner and I met when we were in our mid 20’s and had been together for a very long time.

It was a huge relief to not have an additional burden of guilt by transmission and by association. There was a new wrinkle however. How did I get this? In the way back and un-vocalized recesses of my mind, I suspected there was an equal chance that Jon had infected me, but that possibility had now been effectively put to rest.

I’d been doing some reading on the topic, and all the usual vectors had been checked off. I had no tattoos, no piercings, and I’d never done intravenous drugs. I’d never had a transfusion, and it appeared that sexual transmission, except for the possibility of sex so ferocious as to be in a league way out of my experience, well, that possibility too seemed to be pretty slim. So even though “why and how” is more often than not the booby prize, why, and how the hell did I get this?

Plasma.

I sold plasma in the late 70’s to supplement my meager college income. That had to be it. I even recalled a bit of a dust up at the plasma clinic in Dayton Ohio so many years ago.

The process of selling plasma involved leaning back in a beat up recliner in a marginal for profit facility in a marginal neighborhood, relinquishing a fair amount of blood, waiting patiently as a centrifuge separates the blood cells from the plasma, and then having your own cells reintroduced in saline. A medicinal sugar cookie and glass of juice completed the process.

On one eventful day however it seemed bags had been confused and I was given the wrong cells after my plasma had been spun free as the valuable commodity it was. It was the 70’s. I was young, dumb, and in my teens. Ayds was a diet candy and like every other teenager on the planet, I was invincible and immortal. I saw no danger in selling plasma, just an easy $30.00, or a week’s worth of groceries in 1973 dollars. Selling plasma at the time was a no-brainer, and that hour paid nearly as much as my part time job in the college bookstore.

Looking back, I guess I should be grateful the lab tech told me what happened, and then suggested I wait an few extra minutes, “just to be sure.”

Of course I felt fine, and was more likely than not pleased to have an interesting story with which to regale my fellow starving art students. So that had to be it. For what it was worth, that had to be the source. It was small consolation to know, but there was also a legitimate silver lining. I’d read that even though the Hepatitis virus was slow to do damage, there had been an awful lot of water pass under my bridge and I’d yet to manifest any symptoms. I may be a part of that notable percentage that would develop no symptoms.

“Are you sure you want to take that chance?”

Dr. Thomas in his usual grim delivery didn’t look up. He was studying the results of a liver biopsy. My liver was fine. The small, core sample of tissue revealed little damage, little scarification. Several tense weeks had slipped by and what seemed to me to be good news was not the apparent conclusion of the good hepatoligist.

“We want to catch this while you’re healthy, and I suggest you begin treatment ASAP. There is one treatment that has a fair track record. Interferon. It’s a regime that takes nearly a year but it’s the best we can offer at this juncture.”

I was prepared for this. I’d done my homework and had concluded in advance of this visit that this particularly toxic substance was not for me. I knew I could not run a business 7 days a week while injecting a nausea inducing, depressive drug that had the dubious nickname, “the suicide drug.”

“I’d rather take my chances doctor. If I’ve done this well to date, then I’d rather wait until something less toxic and more effective is available.”

His voiceless response spoke volumes. He looked over his reading glasses, a gesture I’ve always found to be a bit off-putting, and stared wordlessly and directly into my eyes. For a good five seconds he telepathically imparted a message that left me feeling like a poor, dumb bastard. I didn’t budge.

“Dr. Thomas, I have a business to run. I feel fine, my biopsy looks good, and I know something better will come along.”

“Then I would suggest you consider pegalated interferon. It’s a time-release version that calls for only one injection per week instead of three. It’s far less debilitating.”

“OK. I’ll look into it. Thanks Dr. Thomas.”

I left his office feeling more depressed than ever. That bad feeling was a premonition. I knew it.

End of Part !

Kurt Niece is a teacher, writer and author. His latest work, "The Breath of Rapture" is a satirical novel about the perils of religious fundamentalism.