Wednesday, May 25, 2011
DXM History Repeats: The Tumor
It was a tumor buried deep inside my head that led me to start this little experiment of mine five years ago; I took up writing online in an effort to pass the time and keep my mind sharp in the wake of the surgery to remove it. Since the inception of DXM, I've republished the story of my time spent in the hospital having the tumor cut out of me and my immediate recovery period each year on the anniversary of the event; I also wrote an extended piece that dealt with the aftermath of the operation, the lasting damage caused by the tumor and its effect on my physical and emotional well-being. But the surgery-related column I wrote that had probably the largest overall impact took my own experience and used it as a jumping-off point to talk about the larger issue of healthcare in the United States. The following piece was picked up by a few journals and online publications, one as far away as Australia.
The DXM Fifth Birthday Jubilee
Topic: The Tumor
Number of Posts: 29
"Death Be Not Proud (But It Is Cost-Effective)" (Originally Published, 12.30.07)
Even from where I was, in the bed on the opposite side of the room, it was possible to see the gruesome surgical-steel staples bisecting Miguel's head. They ran like a set of corroded train-tracks from ear-to-ear, just beyond the hairline which framed the top of his face.
I'd spent three days trying to figure out exactly what had happened to the man who was my roommate at the Cornell Medical Center Neurosurgical ICU. I watched the nurses run him through the daily regimen of post-op skill tests -- if you consider the ability to open your eyes, follow a finger held in front of your face or correctly state your own name a "skill." Likewise I watched Miguel fail many of these tests over and over again: He could barely keep his right eye open, at one point leading the nurses to get creative and use a piece of surgical tape to secure his open eyelid to his forehead; he never spoke in anything above a barely-audible mumble; his movements were languid and sluggish, as if his bed were sitting at the bottom of an invisible tank of water.
It wasn't until the day that Miguel's children showed up -- when I was forced to sit silently on the other side of the room and watch a tragic bit of theater play out in front of me -- that I finally worked up the courage to ask the nurse just what kind of catastrophe had taken place inside his ruined brain. Watching Miguel interact with his little boy and girl, or at least attempt to, was utterly heartbreaking. He seemed to barely notice they were there -- hardly respond when his wife, a short Hispanic woman who spoke little English and looked like she'd spent the past month sleeping on broken glass, stroked the palm of his hand. The nurses had been kind enough to put a patch over Miguel's dead eye and a Yankees cap on his head in the hope of hiding the most obvious scars of the surgery from his children, but even someone who had never met this man until a few days ago could tell that he was a mere vapor trail of what he had once been. Whoever or whatever had shredded his mind, it had done so with all the subtlety of a sledgehammer. Where Miguel had once lived, there simply wasn't anyone home anymore.
I wasn't even looking at the nurse when she explained Miguel's situation to me; I couldn't pull my eyes away from the sad scene unfolding directly opposite my hospital bed. In hindsight, it was the juxtaposition -- the image of the shadow man across from me set to the weight of the nurse's words -- that left me feeling as if someone had suddenly sucked all the air out of the room.
Miguel, as it turned out, was recovering from surgery to remove a brain tumor -- the exact kind of tumor that had been removed from the same place in my head just three days earlier.
He and I were basically the same person.
And yet there we were: One of us reduced to the mental and motor skills of a child, the other able to watch him intently and try to analyze why.
There was a simple explanation, actually, as to why I couldn't recognize myself in the mirror of Miguel's one good eye, so to speak -- why the layman would never guess that he and I had once shared the same diagnosis. It was because everything that happened after that point had apparently been drastically different, all of it culminating in two forms of surgery which, despite having the same goal, went about achieving it in ways that were light years apart. The operation that Miguel underwent may as well have been done by Theodoric of York compared to the hyper-advanced microsurgical resection that was performed on me by one of the country's most revered neurosurgeons.
Miguel was left with a massive scar; I had none.
Miguel had been in the hospital for well over a week and would likely be there much longer; I would spend only five days in the ICU, then be disgharged.
Miguel likely had years of mental and physical therapy ahead of him; In spite of a few problematic after-effects and a steady diet of medication that my body and brain would require for some time to come, I'd be back on my feet and feeling relatively normal within weeks. Right now, if I didn't tell you I had undergone surgery just a year-and-a-half ago to remove a tumor the size of a pinball from my brain, you'd probably never guess that anything had happened to me.
Same medical crisis -- completely different outcomes.
And as I sat there just a couple of days after my surgery, staring at Miguel -- at the mess his brain had become and the hardships he was now facing -- I reached one conclusion that seemed to be as obvious as it was offensive.
There but for the grace of my insurance carrier go I.
I work for one of the largest media conglomorates in the world. In fact, throughout the length of my career, I've rarely been employed by a company that wasn't wealthy, multi-national and in a position to offer its full-time staff access to the best healthcare money can buy. Yet something about this fact has always rubbed me the wrong way.
"The best healthcare money can buy."
An ironically sickening reminder that in the early days of 21st century America, there's nothing that's above having a price tag slapped on it -- not even your life.
The parents of 17-year-old Nataline Sarkisyan understand this all too well. On Friday, they laid their daughter to rest in Glendale, California, one week after her death, which closed a harrowing three-year fight with bone marrow cancer. Hundreds were on-hand for Nataline's memorial service including a few celebrities who had taken up the cause of saving the young girl during her last days. Their appeals hadn't been directed at God or Mother Nature -- two entities who tend not to listen anyway -- but toward a much more powerful body when it comes to deciding whether a human being lives or dies these days: an HMO, specifically Cigna Corp.
Just before Thanksgiving, Nataline underwent a bone marrow transplant, complications from which caused her liver to fail. Cigna twice refused to authorize a liver transplant, despite a written appeal from her doctors (the company insisted the procedure was "experimental"); it was only after the case began to receive national attention and young Nataline Sarkisyan's picture began turning up in newspapers directly above captions calling her "the face of a broken healthcare system" that Cigna capitulated, reconsidering its death sentence. The company's chief medical officer issued the most public statement possible in an attempt to cast damage control as legitimate concern. He said that Cigna -- in a show of strength-through-mercy humorously reminiscent of Amon Goeth's decision to spare one life out of a hundred-thousand in Schindler's List -- had decided to make an exception for Nataline "given our empathy for the family and the unique circumstances of this situation."
That and the angry hordes picketing in front of their Philadelphia headquarters.
"We volunteered to pay for it out of our own pocket. We decided to bear the risk even though we had no obligation to," the good doctor went on to say.
It's a damn shame Al Gore already got that Nobel Peace Prize.
Unfortunately, in one of those unforseeable twists of fate, Cigna's big-hearted largesse came just moments too late. Nataline died a few hours after the decision was made to grant her the liver transplant that would've prolonged her life.
Well, as is repeated so often this time of year, it's the thought that counts.
Earlier this year, a lot of unnecessary controversy was generated by muckraking filmmaker Michael Moore's excellent indictment of the American healthcare system, Sicko. I say unnecessary because, despite whatever feelings one may have about Moore or his politics, only the most ruthless capitalist would be unwilling to admit that the way we care for the sick in this country is almost irredeemably screwed up. We've given an entity as unscrupulous and indifferent as the free market control over the single most imperative decision in human existence -- literally, whether we live or die. Regardless of what Fox business-creature Neil Cavuto may have to say on the subject, healthcare and profit are two thoroughly antithetical concepts. Giving CEOs the authority to stand on the edge of the arena and issue a final thumbs-up or down while we lay incapacitated or dying is like charging a lion with protecting the Christians.
The most shocking and infuriating two minutes of Sicko -- and the most effective, as Moore wisely allows the guilty parties to do all the talking for him -- provide an irrefutable answer to the question of just how things got this way, how a system that was once predicated on a commitment to good healthcare for all Americans became a cynical money-generating engine that's perfectly willing to let people suffer if it means turning a profit. Moore plays part of an audiotaped conversation between Richard Nixon and his flunky-esque Assistant for Domestic Affairs, John Ehrlichman. The conversation is staggering insofar as the complete lack of shame on display (even from two men whose ignominy was already the stuff of legend). Ehrlichman advises Nixon on a plan to overhaul American healthcare that's being put forth by industrialist Edgar Kaiser, the founder of Kaiser Permanente. Nixon says to Ehrlichman, in classic insufferable, who-gives-a-crap-about-the-little-people fashion, "You know I'm not keen on any of these damn medical programs." Erlichman reassures him by saying the magic words: "This is a private enterprise one. Edgar Kaiser is running his Permanente deal for profit. All incentives are toward less medical care, because the less care they give them the more money they make."
"Well that appeals to me."
Thus were sown the seeds of the modern HMO; the day after that conversation took place, on February 18th, 1971, Nixon proposed a new National Health Strategy based on managed care from private companies. It worked toward obliterating social medical programs -- because "Socialized Medicine" had long been dirty words, the product of anti-Soviet paranoia -- and masked greed under the guise of providing Americans with the best care money could buy, which was great as long as a patient had money to afford the best care.
Nataline Sarkisyan's family had health insurance, and maybe that's the most appalling aspect of her story. She never should have died because she was one of the "lucky ones"; the services were in place to save her life. Her parents fully expected that when their child got sick there would be no questions, no arguments, no delays -- there would just be the care she needed. They lived in the most powerful, wealthy and technologically advanced country in the world, after all, and they both had good jobs and did their part to contribute to society. They were living the American dream. They were part of it.
Now they're left demanding answers -- wanting to know why, in this wealthy nation, there was even a question as to whether it was fiscally prudent to save the life of their daughter.
The fact is this: It's always cheaper to refuse care, and when making money is the motive, believing any consideration other than cost to be paramount isn't just naïve -- it'll get you killed. It's simply never a good idea to trust anyone who stands to profit.
The mammoth company for which I work made sure I had the best possible medical care when I needed it -- they paid for it. I never feared coming up with the money to see a doctor which meant that I discovered the tumor in my head before it grew to the size of a golf-ball which meant that it could still be removed through a procedure done by only three hospitals in the country.
It's because of all of this that I sit here today able to tell you about it.
I'm not sure Miguel could say the same.
And I doubt his wife and children believe that my life is worth any more than his.