Editor’s Note: Florida journalist Sean Holton was diagnosed with Stage 4 glioblastoma multiforme, an almost invariably terminal form of brain cancer, in July 2009. Despite surgeries and grueling treatments—not to mention news of the tumor’s return just weeks ago, Sean willed himself from the start of his ordeal not to cave in to despair, a condition he calls “worse than death.” WEALTH Magazine is sharing his story because, as Sean points out near the end of this post, its message of inspiration and encouragement can be applied by people undergoing any kind of adversity.
Way back when I started this blog, I described my terminal brain cancer diagnosis as “a gift that will give me the opportunity to learn more than I thought I would ever know about the mysterious line between life and death.” When the Romenesko news-industry website picked up my story and zeroed in on that line near the bottom of a long post I had written, the editor inside me cringed. That was because, taken in isolation and read out of context, seeing the idea of cancer presented as some sort of “gift” struck even me (its author) as weird — just a throwaway, feel-good cliché. So I expected anyone who didn’t read the whole post just to dismiss my outlook as an irrationally blithe denial of my grave situation — just some random crazy talk coming from a cancer rookie working overtime to cheer himself up.
Well, guess what? Nearly a year has passed since I wrote The Death Bird, and I’ll be damned if I’m not still feeling that way today, even more than before. I’m no longer a rookie at this stuff, either. I’ve undergone two successful brain surgeries, six weeks of radiation therapy, 11 months of maintenance chemotherapy pills, loads of MRI scans, a recently confirmed recurrence of my brain tumor and in August began my third course of chemotherapy — this time in a more powerful, intravenously administered form. And I’m still alive and learning more about that mysterious line. My latest confirmation came when I shared an outpatient ”IV-drip room” at MD Anderson Cancer Center/Orlando with two other patients in succession; their names were Harold and Dave. Both have had far longer, tougher roads that me (Stage 4 lung cancer, liver cancer, colon cancer, metastasis-to-brain cancer, long hospitalizations, infections, induced comas, take-home-chemo IV kits, the works). These guys are true cancer ninjas—still keeping their spirits high and fighting hard. But we shared something else besides our cancer stories, a nice 8th-floor view and cozy recliner chairs. We had in common the fact that none of us is in despair.
I recognized that quality in both Harold and Dave immediately, because the concept of “despair” has become a major part of my brain-cancer-related investigation into the unsecured borderline between life and death. My research and reading on this topic many weeks ago led me down an old-but-surprising path from my college days and eventually on to an even older story from the Bible that almost everyone knows.
I got my college education in Kansas City, Mo., at a school called Rockhurst, a small, Jesuit-run, liberal-arts institution. I did not major in philosophy, but the subject was a big part of the core curriculum, and the history and spirit of philosophy permeated the campus. You could be hanging out at the library, the student lounge or even a keg party and hear names such as Kant, Hegel, Kierkegaard, Nietzsche, Heidegger or Sartre tossed around in casual conversation. So even had you spent four years cruising through Rockhurst College not as a disciplined scholar of philosophy, but rather as just a slack-jawed mouth breather with your convertible top always down, it would have been hard to avoid having a few such names as these slip right into your head and stay there, like little fireflies of fake knowledge.
One of those bugs that got stuck in my teeth carried the scary-cool name of Soren Kierkegaard, who was a 19th-century Danish author and early existentialist philosopher. One of his major works I’d heard about in college was a book called The Sickness Unto Death. I never picked up that book and read it, so I didn’t even know what it was really about. But the title stuck with me, if for no other reason than that I thought it was an ultra-badass name for a book. Then, upon becoming a brain cancer patient nearly 30 years later, just recalling the name of that book one day suddenly made me think it might be directly relevant to my personal medical situation. So on July 6 I thought, “What the hell? I’ll just see if I can download The Sickness Unto Death on my Kindle and see what it’s all about.” (Thanks again to my generous former Orlando Sentinel colleagues for that Amazon Kindle you got me as a get-well present last year.)
So that was my unexpected path. Now on to the destination that really surprised me.
As I began reading, I quickly learned that The Sickness Unto Death is a treatise about despair. “Okay,” I thought. “This could come in handy for me, because being diagnosed with a deadly form of cancer unavoidably will stir up certain human emotions in the soul — starting with the constant white noise of medical uncertainty, leading naturally to pangs of anxiety, then fear, panic and eventually, if you’re not careful, sweeping you down into a whirlpool of utter despair. I have felt twinges of each of those emotions from time to time over the past year and have tried to manage them aggressively so as not to be overwhelmed by any of them. So what can Kierkegaard tell me that might help me now?”
Well, as I learned next, the origins of the ultra-badass title The Sickness Unto Death sprang not from a 19th-century philosophical tract, but from the Holy Gospel According to John, Chapter 11. And the scary-cool dude who came up with that phrase was not a gloomy Danish thinker with a hard-to-pronounce name, but Jesus Christ himself. The phrase comes from the familiar story of the raising of Lazarus from the dead. A quick recap: Lazarus was a pal of Jesus’ who lived in Bethany with his sisters Martha and Mary, who are also recurring characters in the gospels. When Lazarus falls ill, the sisters send out word to Jesus in hopes that he will take a break from his preaching to swing by and cure their brother — just as he has cured so many others. When Jesus hears about the situation, he tells his disciples they would go to help Lazarus soon but that there was no huge rush because Lazarus is only “asleep.” “This sickness will not end in death,” Jesus says. So they make their way slowly, but by the time they arrive at Mary and Martha’s house it turns out that Lazarus has already been stuffed away and stinking in his tomb for four days. Like modern-day Americans frustrated with our complex healthcare system, Martha and Mary seem slightly miffed at first – they rush out to greet Jesus with a gentle complaint that Lazarus would not have died had Jesus just gotten there sooner to provide full miracle benefits (with a reasonable co-pay for the house call, of course). But Jesus calms the sisters, tells them not to fear, and in short order he calls Lazarus forth from his tomb. Wow! Story over, right? The greatest miracle we’ve seen yet, right? Well, yes. Way back when I was a little kid hearing it in church with my parents, the surface plot was all it took to convince me of Jesus’ superpowers. But closer, more devout listeners understand that the story’s meaning goes much deeper than a big magic trick. It’s a story about faith: the belief Lazarus and his sisters have in Jesus is so strong it is able to bring a dead man back from the grave.
But in Kierkegaard’s analysis, the most interesting angle of the story is not that Lazarus was physically dead and came back to life — but that he was never REALLY dead to begin with. Meaning he was not spiritually dead. And DESPAIR is the word the Dane uses to describe such spiritual death. So, in the end, he says, it is DESPAIR that is “the sickness unto death” — not nasty, physical stuff like cancer or any other sickness or disease. And in the book, the antidote that he prescribes for despair is faith, specifically Christian faith. And I think all of Kierkegaard’s existentialist buddies later made fun of him for being such a religious sap.
I’m still not a scholar, and all of the above is just the result of my drive-by Kindle reading. Despite the length of this rambling post I know I’ve blown past a lot of nuance and boiled stuff down so much here that I’ve made a hash of it. But this part of my learning experience was definitely worth a $4.95 download, and I wanted to share it because it has helped me frame the positive attitude about my future that lots of people keep asking how I maintain. The point of this post is not to preach the Bible, Christianity or 19th-century existentialism—but just to endorse faith, period. Faith in SOMETHING — whether it’s in a Supreme Being, the teachings of Jesus, some other set of religious principles, the eternal nature of human spirituality, the love of family, friends and everyone you hold close, or simply faith in your own higher self. I happen to have a wonderful church and priest helping me down my own road right now. I think anyone, whether religious or not, can find what they have faith in through careful listening, meditation and prayer. And once they’ve found it, it’s not necessarily anyone else’s business. The main thing to remember is that faith is ultimately what protects you from despair — which is a scary thing that can be caused by lots more than just some dumb, terminal illness. Despair can come from family troubles, financial worries, constant mental strain, career obstacles, loss of self-assurance, or whatever. Lots of regular folks who are presumed to be well and functioning normally are actually walking around out there in total despair, a condition that I now am confident is worse than death itself.
Okay, that’s enough dime-store philosophy for now. As I said earlier, I could instantly tell from just talking to Harold and Dave, the two guys who sat next to me in the chemo room that Tuesday, that despite the gravity of their illnesses, neither was in a condition of despair. I could tell they were both staying very strong. And I could tell they both had some kind of faith in something, even though we didn’t talk about what that was. So, far from being exhausted and discouraged by what might have been a dreary new medical procedure for me, I came away from that chemo room feeling inspired and thinking again about the Lazarus story and Kierkegaard’s book. Because they teach that even if we are suffering from some serious disease that’s hard to control, it is always within the power of each of us to overcome the worst sickness of all—the sickness that is unto death.
Read Sean’s original post with a cool Jesus/Lazarus cartoon panel here.
Tags: BLOG, brain cancer, chemo, death, despair, existentialist, gift, glioblastoma multiforme, Jesus Christ, Kierkegaard, Lazarus, philosophy, terminal