SAME TIME TOMORROW

What’s scarier than death? DESPAIR!

Posted in Uncategorized by Sean Holton on August 5, 2010

Hi. I'm not REALLY dead. I'm just here for my chemo treatment.

  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 cliche. 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 now had 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 just Tuesday 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” Tuesday 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 a couple of 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 everybody 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 philosphy but the subject was a big part of the core curriculum and the history and spirit of philosophy permeated the campus. Some of my dearest friends were philosophy majors.  You could be hanging out at the library, the student lounge or even a keg party and hear names like 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 slackjawed mouth-breather with your convertible top always down, it would have been hard to avoid having a few such names as those 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 philospher. 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 an 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 housecall, 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 other 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 alive and 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 dimestore philosophy for now. Like 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 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.

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28 Responses

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  1. Bluedevil said, on August 5, 2010 at 10:20 pm

    You’re plucking some soulful strings, Seanboy.

  2. Jana said, on August 5, 2010 at 10:24 pm

    Wow. Thank you.

  3. ellen said, on August 5, 2010 at 11:11 pm

    i love you seanie

  4. Kathryn Quigley said, on August 5, 2010 at 11:31 pm

    Amen.

  5. fish said, on August 5, 2010 at 11:35 pm

    ditto on the wow.
    last week, riding through Iowa with my friend Dr. Mel, a pediatric oncologist, we talked a lot about this topic… she gets some parents who think that “God” will cure all or that “God” is doing this to them or even that perhaps she’s not doing enough and thus doesn’t have faith… but for many of us, faith is the way to see our way through difficult times and deal in a positive way, as you are…
    thanks for continuing to share, Sean!

  6. Schmadtke said, on August 6, 2010 at 6:04 am

    Thanks, Sean

  7. Mark said, on August 6, 2010 at 7:08 am

    Sean:

    Beautiful post and one of the best arguments I’ve read in favor of faith in quite a long time.

  8. Ann Hellmuth said, on August 6, 2010 at 9:04 am

    Our faith in you Sean, and the help you have given us, is what is making sure that our spirits are high. You are my philosophy hero.

    ann

  9. Jane said, on August 6, 2010 at 9:52 am

    Keep believing, Sean! I dedicated my yoga practice to you on Tuesday so that you would find strength to endure the ravages of chemotherapy and stay a long-term survivor.

  10. Julie Holton said, on August 6, 2010 at 10:24 am

    Thank you Sean. I love you very much.

  11. patebooks said, on August 6, 2010 at 10:34 am

    Love, faith, hope. I think we need faith in all.

    The Methodists at Edisto stilll have you in their prayers.

  12. Jane said, on August 6, 2010 at 12:06 pm

    Here’s another piece on the ‘Topic of cancer:’ http://bit.ly/aeu3zh

  13. Tim Holton said, on August 6, 2010 at 12:54 pm

    Sean,
    What you have written is evidence of what is growing in you: a robust faith-a spirit alive and well.What you have done with your disease is not unlike what Lazarus did and not unlike what Harold and Dave have done. You’ve released it into God’s hands.In turn He has empowered you with His grace. You are teaching us a lot about how to handle what is inevitable in our lives as you shape your point of view. All I can say is thanks buddy. Your faith is incredible, always keep it in your heart.
    I love you my brother,
    Tim

  14. Geri said, on August 6, 2010 at 3:52 pm

    Your musings bring to mind a conversation a few years ago between me and my daughter, a Buddhist. She was trying hard, I think, to be patient with my recounting of yet another chapter in my spiritual “journey” (which often has lacked a compass). “It’s not important what you practice,” she said. “It’s important that you practice.” Aha! What a revelation! Sometimes the very practice of some sort of spiritual discipline is the best “faith” one can have. Thanks, Sean.

    Geri

  15. Mark Schlueb said, on August 6, 2010 at 4:38 pm

    Sean,

    You’re no longer my editor, but you’re still teaching me.

    Thanks,
    Mark

  16. Linda K. Wertheimer said, on August 6, 2010 at 8:32 pm

    Dear Sean,

    You may not remember me from my Orlando Sentinel days, but I do remember you and your work. I’m so sorry to hear about your illness. I am so moved by what you write in this particular blog entry, particularly these words: “The main thing to remember is that faith is ultimately what protects you from despair…”

    I have long been on a spiritual journey myself that began not because of illness striking me, but because of the death of my brother when I was 21. What you write here really applies to all faiths.

    What I am learning is that the most important thing is to not let yourself suffer alone, but rather to surround yourself with community, whether it is the community of your faith, family, or friends.

    My heart goes out to you.
    Linda (K. Wertheimer)

  17. Jane said, on August 6, 2010 at 11:01 pm

    As I was doing some searching on 1,000 origami cranes, I came upon this site: http://www.caringbridge.org/visit/jensworld It’s a great site, full of uplifting posts and photos, including one of Jen in a t-shirt that says: My neuro-oncologist is my homeboy. Got to love that sense of humor.

  18. Colorado Bob said, on August 6, 2010 at 11:01 pm

    For me it’s always been music , and the 8 track in my ear.

    This one’s pretty good for when you’re low on gas ……..

    Zulu War Theme Isandhlwana 1879 Soundtrack(John Barry)

  19. Colorado Bob said, on August 6, 2010 at 11:03 pm

    Wow auto embed .

  20. Jamie said, on August 7, 2010 at 8:48 am

    Somewhere lurking in some grey cell from my distant past was the description of despair as “The one unforgivable sin” simply because despair is the denial of the existence of God. It is remarkable that despite the trials presented by your illness, you have become a true warrior in your own life.

  21. Elaine K said, on August 7, 2010 at 2:49 pm

    I feel sad for all the people in the world who don’t know you. Once again you have made my life richer.

  22. Maxtrue said, on August 7, 2010 at 3:56 pm

    Thank you for that Sean….

    You are really a remarkable guy. I always find your thoughts liberating.

    Remarkable indeed.

    Nothing about you is dime story.

  23. Shel said, on August 9, 2010 at 2:27 pm

    Wow, just wow. Reminds of an old Cherokee Indian parable:

    An old Cherokee chief was teaching his grandson about life…

    “A fight is going on inside me,” he said to the boy.
    “It is a terrible fight and it is between two wolves.

    “One is evil – he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, self-doubt, and ego.

    “The other is good – he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith.

    “This same fight is going on inside you – and inside every other person, too.”

    The grandson thought about it for a minute and then asked his grandfather,
    “Which wolf will win?”

    The old chief simply replied,
    “The one you feed.”

    It’s obvious which wolf you’re feeding Sean.

  24. Michael aka Blumfie said, on August 11, 2010 at 3:32 pm

    Great post, Seanski. (Apologies to others–one of the many terms of endearment bequethed on Sean over the years.)

    It’s great to hear you articulate the forces that help you maintain that state of optimism, hope, love, humor, etc.–the whole nonsickness that continues to make your life a blessing for you and for the rest of us.

    It’s also gratifying to read the wonderful posts in response–love the Cherokee parable, Shel. It’s essentially Deuteronomy 30:10–“behold, I set before you life and death, a blessing and a curse.” But that notion of which wolf do you feed is a marvelous way of showing the continual choice we all have.

    Here’s to carbo-loading all of our wolves of joy!

  25. MB Regan said, on August 11, 2010 at 7:57 pm

    Sean: Just back from awhile catching waves, so I’m late commenting. But I’m going to second Blumf. Thanks for pulling this all together. Now I’m in the position of trying to decide whether the prayer post or this most recent down-with-despair post is my very favorite… So I’ll just put my faith in both.

  26. Blonde Wino said, on August 12, 2010 at 12:41 pm

    I get scared just reading what you go through. Fear can be healthy, despair is debilitating. I like when cancer loses. As always, sending energy your way.

  27. Colorado Bob said, on August 21, 2010 at 5:11 pm

    NEW YORK, Aug. 21 /PRNewswire/ — Twenty-nine-year-old athlete Paul Spencer broke the Guinness World Record? for the “Fastest Cycle Across America: North to South, then West to East” today, Saturday, August 21st. He completed the 4,700 mile trip in 44 days, 400 days shorter than the previous Guinness World Record? for the trip, achieved in 1999.

    http://www.earthtimes.org/articles/press/cyclist-breaks-guinness%C3%A2%E2%80%9E%C2%A2-world-record,1430910.html

  28. Maxtrue said, on August 23, 2010 at 1:46 pm

    http://www.foxnews.com/scitech/2010/08/23/killer-animals-live-saving-cures/
    I just saw this Sean. Not sure what application it has…..

    Also this:

    “Furnari, along with postdoctoral fellows Maria-del-Mar Inda and Rudy Bonavia, and Webster Cavenee, PhD, professor of medicine and director of the San Diego LICR branch, and others noted that in GBMs only a minority of tumor cells possess a mutant form of the epidermal growth factor receptor (EGFR) gene. These cells drive the tumor’s rapid, deadly growth. “Most GBM tumor cells express wild-type or normal EGFR,” said Furnari. “Yet when expressed by itself, wild-type EGFR is a poor oncogene.”

    The scientists discovered that tumor cells with mutant EGFR secrete molecules that cause neighboring cells with wild-type EGFR to accelerate their tumorigenic growth. “The mutant cells are instructing other less malignant tumor cells to become more malignant,” said Furnari.

    This signaling pathway between GBM tumor cells was not known and presents a new and potentially promising chink in the armor of glioblastomas. “If we can inhibit or block this cellular communication, the tumor does not grow as quickly and may be more treatable,” Furnari said. Researchers have already identified two molecules that appear to trigger EGFR activity on non-mutant tumor cells.” http://www.physorg.com/news200927354.html

    My best Sean, awaiting your next update….


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