The Damned Hook

The instructions for dentists working on HIV patients must go something like this:

Step 1: Avoid the tedium of “drilling and filling” cavities by simply extracting the affected tooth. If in doubt, also extract surrounding teeth.

Tooth extraction has the double advantage of “marking” the patient, making one’s indigent status more obvious in public places, and assuring other service agencies can provide the proper level of care to the various social strata. Who would have guessed such a simple procedure could transform even the most staid and solemn patients into a goofy caricature of their previous selves? If you haven’t seen them, the “before & after” photos will certainly provoke a chuckle!

In all fairness, the real reason dentists are more likely to extract than repair the teeth of HIV/AIDS patients probably has more to do with dollars than “social branding.” They’re simply “repairing” the affected patient using the cheapest solution available, which is removing the tooth altogether. This solution carries the secondary effect of assuring the patient won’t return later with further complications – at least not for the same tooth. The resulting “social branding” is simply an auxiliary result – an unexpected side effect of our current cost-cutting measures.

My tooth had been extracted a year and a half ago, shortly after arriving in East Texas, though it came with the promise that I’d get a bridge or implant to replace the missing tooth. This, it turned out, was one of those things doctors tell their patients so they don’t struggle against the foregone conclusion – which is the fact that I was in a tooth extraction factory, rather than the dental college their sign had indicated. After a year of being rejected for a replacement tooth, I finally gave up & asked my doctor for a “retainer.”

After several further months of asking, I found myself still without an appointment… without a tooth… and of course without the little plastic thingy that included a fake plastic tooth. So I took up the habit of “camping out” – which is to say I would show up at the clinic on designated “dentist days,” hoping to have a word with the good doctor – to convince him of my need.

I was finally granted a brief audience, during which the dentist agreed to make my “temporary partial” – all the while feeling like some 45-year-old version of Oliver Twist, holding up to him an empty bowl and pleading, “Please, sir, I want some more.”

A few weeks later, the dentist’s technician handed me my little plastic thingy. It didn’t fit exactly, but I didn’t care. I was simply thrilled to have the object that might help remove some of the social stigma – my “branding.” I went to Wal-Mart & bought a Dremel tool & returned home to work. After several tedious hours, I had shaped the “thingy” into an object that would fit semi-comfortably into my mouth. Though speaking was difficult (since it filled much of the space under my tongue), I reasoned that I’d be able to work through it – and after several weeks, I was able to speak, for the most part, without a lisp.

The “retainer” thingy lasted for several months… all the way up until two days ago, when I accidentally crushed it. You see, the object was never very comfortable, and I certainly had to remove it to eat, due to the uncomfortable way food would sandwich between my gums and the plastic. I was in the habit of wrapping it in a napkin and placing it in my pocket. On this occasion, it had somehow worked its way onto the floor -- and I had picked it up, thinking it was garbage, and crushed it….

How my bad week really started…

I should have known something was up over a month ago, when my favorite pen went missing. It’s a matte black collapsible job that fits easily into my jeans pocket, so that I always have the writing utensil I’ll often end up needing. A lot of technology goes into them, even if they don’t cost very much these days. Dubbed the “Fisher Space Pen” and nicknamed the “Bullet Pen” (presumably because the collapsed version resembles a bullet) they were developed back in the late 1960s for the Apollo astronauts, featuring pressurized, zero-gravity-proof ink, and a formulation that writes well in temperature extremes. They were made available to the general public back in the mid 1970s, and I promptly bought one. It was one of the only personal objects I brought with me to the Air Force Academy, where I considered it a type of good luck charm, especially considering my dream at that time was to become an astronaut – and ended up using it as a tool to help disassemble my rifle… Oh, and to write with. Back then, they only made one version, and it was chrome silver, though nowadays they sport many options, from colored enamels to the matte black version I had just lost….

No, wait… let’s start at the beginning…

I’m constantly amazed at how severely and how completely the human body is ravaged by the AIDS virus. Since being diagnosed a short two years ago, I’ve been visited by a variety of unusual illnesses from a bizarre strain of pneumonia to thrush to a wicked disease called “Mycobacterium Avium Complex” or “MAC”, which is itself actually an assortment of smaller wicked diseases and which landed me in the hospital for the first time in my life, shortly after arriving in Tyler, TX – where I had presumed I was coming to simply die.

The point of telling you all that is to explain why my doctor wasn’t surprised, four months ago, when my TB test came back positive. “It’s probably not TB,” he explained, “because once you’ve had MAC, you will likely present positive TB results (which is a hardened nodule at the site of the injection) from now on.”

Still, in the interest of prudence, he advised that I proceed with a chest x-ray, hopefully to rule out the possibility of further complications – and this started the process I’ve become all-too-familiar with over the past two years. Once again, I would find myself, like the child in Dickens’ novel, holding up an empty bowl and asking “more, please.” Call it what you like…. I call it “begging” -- begging for healthcare.

When you have AIDS, then there is typically (though not always) a mechanism in place where you can get AIDS medication and treatment. But these structures tend to have strict guidelines that prevent practitioners from assisting patients with most of the opportunistic conditions that almost always arise as a direct result of a compromised immune system. It’s as though the federal government placed placards in the office of every healthcare provider in the country that says, “Uncle Sam has to give you AIDS medications to keep this from looking like genocide, but we truly have no interest in your survival.” In fact, Uncle Sam doesn’t have to do any such thing. There is no federal guarantee of AIDS assistance whatsoever, leaving the decision to each state of whether or not to help.

Fortunately, my doc hooked me up with the county health department, who happened to have an agreement with a local hospital. And while it took them three full months to get me scheduled, I was finally given an appointment for chest x-rays, all at a reasonable cost of under $100 (though when one is on disability, a more reasonable price might have been zero dollars).

Of course, I wasn’t particularly worried about anything. After all, it had seemed to me that the doc would have been more surprised had my TB test come up negative. Still, I was happy to go through these motions to know for certain that there was no risk of my spreading a dangerous strain of TB among family and friends – even though I had been baffled by the three-month delay (especially considering the recent international scandal over the Atlanta Lawyer who traveled against CDC guidelines). I was struck, therefore, with a slightly odd feeling, when the x-ray technician remarked, “good luck,” after the routine procedure.

I was unavailable when the county health officer called, so they tried the alternate number I had provided on the intake form – which was my mom’s number. “Mrs. Cason,” she said, “your son’s x-rays show there is no tuberculosis present, but we did find a small mass in his lung. He should schedule a biopsy right away to rule out cancer.”

“Schedule a biopsy…” I considered when mom told me the news. That sure sounds easy. It was October, though, and I was nearing the end of the federal government’s enforced two-year “wait” for Medicare. If you’re not familiar, this has been the federal standard for several decades now -- a cash saving measure to keep certain classes of taxpayers happy. After all, no one in their right mind would volunteer to pay for someone else’s healthcare expenses, would they?

I had been hoping against hope that I might survive the mandatory two-year wait, and I had almost pulled it off. With an official disability date of November 30, 2005, I only had a month to go. Surely, I reasoned, my biopsy could wait another month.

Just to be sure, I phoned the Social Security Administration, whose friendly official looked me up and informed me of a change in policy. “It’s still a two-year wait,” she said, “but now its two years from your first disability paycheck.”

As another cost-saving measure, the federal government some time back initiated a mandatory six-month delay prior to receiving benefits, after becoming disabled. “Two years,” it turns out, has become a euphemism for two-and-a-half years. I don’t get help until April of 2008.

And I found myself doing what AIDS patients are forced to do every day all around the United States. I found myself begging for help. “Surely you can make an exception. I may have cancer. Surely you can make an exception when a life may be at stake.” But the sympathetic clerk had no power to make such exceptions. The federal mandates are, after all, set firmly in place for very good reasons. All ramifications have already been considered and any exceptions have already been made and incorporated into the law that currently and firmly withholds any healthcare prior to the proscribed 2.5-year moratorium….

Which brings us back to my bad week…

By the first week of November, I had been living with the knowledge of a positive TB result for 4 months, and the knowledge of the “mass” for 1 month. I considered myself fortunate that the TB test had been positive, since I would have otherwise never discovered the mass – yet was slightly mystified by the month-long waits before being able to proceed… waiting for appointments & waiting to hear back from health care professionals.

Fortunately, my regularly scheduled doctor appointment was in the first week of November, and I was eager to discover my options. “Look,” I offered, “why not wait and get the biopsy in April, since I wouldn’t be able to afford cancer treatment until then anyway?”

But the good doc pointed out that days and weeks could make the difference between life and death right now. “With cancer,” he stated flatly, “the name of the game is early detection and early treatment.”

He brought his chief nurse into the exam room, so the two of them could discuss my “game plan” – which was to find me some local discount biopsy options. “It’s not as easy as making payment arrangements,” he pointed out. “They’re going to want a substantial down payment before they’ll see you, and the fees will be in the thousands of dollars.”

He might as well have said “millions,” and my heart sank as he left me, for a moment, alone with the nurse. “You know,” I said to her, “and I hate to sound grim… but it’s almost as if they’re hoping you die during that two-and-a-half year waiting period.”

Her eyes welled up a little as she replied, “I’m afraid you’re right. The waiting period was established at the height of the AIDS epidemic, because they knew most of the AIDS patients wouldn’t make it that long.” It was a way to keep Medicare intact, by getting rid of all those pesky AIDS people.

And then it hit me.… The absurdity of “begging for healthcare”.… The absurdity of begging for “exceptions” to the strict guidelines. Why would they make an exception to save my life, when the purpose for the rule in the first place was to make sure that I didn’t survive?

That was Tuesday morning.… The Tuesday morning when it was finally explained to me.… About how our lives don’t really matter after all & how we were just supposed to die & would we kindly just please “do it, and decrease the surplus population,” as Scrooge once famously sneered.

That afternoon, I had a couple of friends over for tea and to ruminate over my current revelations and receive, finally, the comfort of friendship, which is a great and powerful comfort.

And the “neighbor kids” -- friends of my 7-year-old nephew -- kept knocking on the apartment door and asking to borrow the dog leash but probably mainly curious about the table, set with tea and cookies. So I gave them cookies and dog leashes and scurried to and from the kitchen, stooping at one point to pick up a napkin that had been dropped to the floor, thoughtlessly crumpling it in my hand and instantly recognizing the sound of my retainer being snapped into two neat pieces.

It was almost too much. I couldn’t quite bring myself to smile after that. The tea was almost over anyway, and my friends, sensing my sudden change in mood, excused themselves and left me to my own devices.

I mechanically put away the dishes and, though it was only 5pm, went to my room to don my pajamas and robe. As I pulled the robe off the suction hook on my closet door, however, it came off – landing with a thump onto the carpet.

This happens, from time to time, with these suction type hooks, manufactured specifically for apartment dwellers, such as myself, and for those simply too lazy to want to go through all the trouble of drilling a hole to install a more traditional hook with screws. The procedure is to clean the mounting area, and re-moisten the suction cup under a faucet… and then simply re-mount the hook in its original location. All of this I accomplished quickly and mindlessly and turned toward my bed, where I intended to lay & rest & think.

But as I dried my hands, I once again heard the familiar “thump.” So I dutifully repeated the procedure, cleaning a bit more meticulously any unseen particles from the mounting area, and pressing more firmly the hook in place… and once again, as I dried my hands, the hook fell onto the floor. Three more times I repeated this ridiculous performance, each time growing more upset, and wondering what further lessons the universe could possibly have in store for me after such an awful week.

I had a choice, at that instant, whether to sit on the floor and break into great heaving sobs, as I was at the moment inclined to do… or smile….

I could, after all, survive the loss of my favorite pen, and my hard-won retainer, and even my cancerous lung, but would be completely broken into a lump of heaving sorrow by a damned hook. The thought of being “beaten” by a hook was, rather than the proverbial “straw” that would send me into despair, the exact ingredient I needed to understand that the whole thing was just one big joke -- in a funny/strange, sadistic kind of way.

I washed the mounting area one more time, and smacked that sucker hard enough against the door, that it didn’t have much of an option. That was two days ago, and it hasn’t budged since.

In the past 48 hours, no less than three friends have offered to help pay for my biopsy. I’ll probably take one of them up on the offer, though I’m not sure why, since the treatment required for a diagnosis of cancer would be out of reach for even a very wealthy friend. This is simply the state of affairs in a country that features “uninsurable” citizens.

My vision may be altered, but it is not unique. I think that anyone who has been near death or who lives with a terminal or chronic illness may receive an opportunity to re-evaluate all kinds of priorities, and see, finally, the tremendous connection shared by all living things. These days, I’m less likely to swat at a bee… let alone a person….

Such revelations are unknown in Washington, where the dictate that we should die is made clear at every turn. But I have looked to my family and to my friends, and have found that we may survive if we form a community and stick together. Our personal communities of friends and family may be our only available option as we work toward a country that has finally learned about human kindness and compassion.


Yesterday I was rummaging for my checkbook. I wanted to write a $12 check to the Audubon Society, because I like birds and because they’re giving away these groovy free blankets with membership. A matte black object in the drawer caught my eye and  I suddenly felt calm… like everything is going to be okay.

-- Troy Carlyle