the roles we play

     I overheard my wife talking with my son and later remarked to her what a different tone in conversation it was from the one I had with him earlier.  My interaction involved me on the receiving end of his tirade which was filled with anger, rage, despondency.  I was jealous of her conversation.  My wife did not so much apologize but lament the role I played.  "You are his Atlas.  You're the only one he feels safe enough to vent his pure venom upon without crumbling.  And he knows this." 
     We are not passive receptors of suffering.  We are engaged actors with different roles to play upon the stage.  Both my wife and I are parents but the quality and nature of our suffering differs tremendously.  One is neither heavier nor lighter, nor more difficult to bear.  Anything that threatens to rip apart the soul is something that does not vary by degrees.  It is an all or nothing proposition.  But there are different roles to play, for better or worse, and we must play them out or risk becoming untrue to thine own nature.

what is found in suffering

     Ram Dass was an eastern mystic yet his approach to suffering differs little from the late Pope John Paul II who also includes a mystic element as well as the road to grace.

Human suffering evokes compassion; it also evokes respect, and in it own way it intimidates.  For in suffering is contained the greatness of a specific mystery.  This special respect for every form of human suffering must be set at the beginning...we dare to touch what appears in every man so intangible: for man, in his suffering, remains an intangible mystery....suffering seems almost inexpressible and not transferable, perhaps at the same time nothing else requires as much as does suffering....and that therefore basic question must asked about it and the answers sought.  It is evident that it is not a question here merely of giving a description of suffering.

This, to me, seems at least an honest answer, if not one of the most honest answers I've seen from biblical scholars, ministers, or even the Bible itself (I find the story of Job absolutely reprehensible).  John Paul concedes the importance and universality of human suffering in the same breath as acknowledging that it is a mystery.  If there is an absolute understanding of suffering, he is willing to admit that meaning lies shrouded in mystery.  And despite that impenetrable shroud, we must still pry to find what it means to us.

the lonliness of suffering

“Oh God, midnight’s not bad, you wake and go back to sleep, one or two’s not bad, you toss but sleep again. Five or six in the morning, there’s hope, for dawn’s just under the horizon. But three, now, Christ, three A.M.! Doctors say the body’s at low tide then. The soul is out. The blood moves slow. You’re the nearest to dead you’ll ever be save dying. Sleep is a patch of death, but three in the morn, full wide-eyed staring, is living death! You dream with your eyes open. God, if you had strength to rouse up, you’d slaughter your half-dreams with buckshot! But no, you lie pinned to a deep well-bottom that’s burned dry. The moon rolls by to look at you down there, with its idiot face. It’s a long way back to sunset, a far way on to dawn, so you summon all the fool things of your life, the stupid lovely things done with people known so very well who are now so very dead – And wasn’t it true, had he read somewhere, more people in hospitals die at 3 A.M. than at any other time...” - Ray Bradbury from Something Wicked This Way Comes

     I can close my eyes and the memory comes unabated.  I was giving my brother liquid morphine every thirty minutes as the hours passed into that abyss nearing 3 am.  It was time for his next dose and as I got all my tools ready, I noticed in the smallest moment that his breathing slowed and became more regular, less labored.  In that small moment, time stood still and spread to infinity.  I felt in that instant the cold stare of Death's eyes upon my brother.  In truth, my brother as I knew him had left long ago leaving only his fading body, myself and Death in the room.  Naught was left but the profane and profound, the sacred and forbidden, the tangible and intangible forever ordained to play out in my head alone.

fierce grace

The most obvious place to look for insight into suffering is religion.  But even within the same religion, differences abound.  The quote below came from watching a documentary about an American who became a guru of eastern thought.  From a wealthy and supportive family, a highly educated psychologist of Ivy League ilk, his books best sellers, sold out speaking engagements, he thought he had it all figured out.  Until he had a debilitating stroke that left half of him paralyzed.  Even more cruelly ironic was that the words that used to flow so easily, no were a sense of frustration as the part of the brain associated with language was also part of the stroke.  He now knew suffering for the first time in his life.  Where he had found solace before, he found hollow words instead.  Several years after the stroke wrestling with both the physical as well as mental limitations, he was still able to put together a book with help.  And his view deepened now to include true suffering which was so inherent to the human condition.  He termed his new found grace a "fierce grace". 

After any major physical “insult,” as they call it, it’s all too easy to see yourself as a collection of symptoms rather than as a total human being, including your spirit — and thus to become your illness. Fear is powerful and contagious, and at first I allowed myself to catch it, worried that if I didn’t do what the doctors ordered, I’d be sorry. But now I’m learning to take my healing into my own hands. Healing is not the same as curing, after all; healing does not mean going back to the way things were before, but rather allowing what is now to move us closer to God. - Ram Dass

suffering

     Over the last few years of my life, I think it is fair to say that I have become well acquainted with suffering.  Only, I haven't really.  I have felt the emotions, the effects, yes.  But I do not understand it well enough to be acquaintances with it.  And as I ponder endlessly about it, it comes down to two concepts, really.  The first is the nature of suffering.  In other words, what is the suffering like? The second is what to do with the suffering.  Life sucks, now what?  Rather than try to explain them, I'm going to try a different approach.  I'm going to use different anecdotes of my time with patients or literary sources.  All of them are as much right as they are wrong in that these are eternal questions of what it means to be human.  Ultimately, I would guess that if one were to interview 100 people undergoing intense suffering, while there would absolutely be some commonalities, there would be 100 different stories rich with their own shadows of gray and subtleties of truth for that individual.  As always, all stories of patients are complete bull plop with respect to facts but 100% true.

drug testing

     This article asks the question of why don't we drug test doctors. Because we'd fail. Though the examples used in the article are not doctors to be fair. I just took an "anonymous" survey for a research project on the misuse of ADHD drugs while in medical school. It'll be interesting to see the results. I'm guessing the number will be damned high.
     The real reason why doctors will never be drug tested is that too many doctors would be ruined in a witch hunt. What would the public do with the knowledge that Dr Bob is taking an antidepressant and anxiolytic because of a recent messy divorce involving a nasty custody battle? Nothing about his practice has changed. Patients haven't complained, in fact, they like the guy. Nurses have noticed no difference in his patient care. But let that information into the hands of lifetime bureaucrat and Dr Bob's license wouldn't be worth the paper it was printed on. It would result in a legal nightmare because that doctor would turn around and sue every party involved - the testing company, the licensing board, hospital, etc. If you think this information would be "confidential" I have a bridge I'd like to sell you.

the power of expectation

     My mom has recently entered the 20th century of texting and developed a liking to it.  She was texting me during an especially boring seminar this past month.  She was proud of her developing a habit of walking and was relaying it to me.  As it was a cold day, she was looking forward to a warm glass of glögg afterwards.  What the hell is that?  Apparently, it's the Nordic version of mulled spiced wine.  Of course, my wife already knew this.  My mom said she came in rosy cheeked and warmed herself a glass of glögg.  Feeling already invigorated by the walk, she said after drinking half the glass that she began to feel a nice feeling of warmth and relaxation.  By the end of the glass, that sense of relaxation and warmth had become even stronger.  This stuff from her Finnish ancestors packed a powerful punch, she thought.

     Only the next day did she read the label.  It said 0% alcohol.  None.  Zip.  Nada.  It's to be mixed with rum or red wine.  I about died laughing when she told me.  Her simple expectation of the effects of alcohol were enough to induce the relaxation effects of alcohol.  She also swears by that stuff Airborne to fend off colds.  Never mind the stuff has been debunked and the company was successfully sued for false advertising.  It's fought off many a cold for her.  I told my mom, "you've figured out something that western medicine has never been able to figure out - a way to harness the power of the placebo.  Run with it."

the altar upon which we worship

     "What happened to evidence based medicine?  I thought we were supposed to be a school that teaches that, not hocus pocus stuff like acupuncture," I overheard a student say at the end of a workshop dealing with integrative medicine.  I will be the first to admit that there is much woo in alternative therapies.  I approach ALL therapies with a skeptical eye.  But how many doctors are willing to admit, hell are even aware that there is quite a bit of our guidelines that have just as much woo and hand waving?  I told the student, "I've gone to acupuncture.  It helped somewhat but just wasn't cost effective," as I gave him a brief rundown of what life is like with chronic pain. 
      "It sounds like you need a good orthopedist," he replied.  Did he think me stupid?  Of course, that's the first person I went to after my family doc.  Surgery couldn't help me so he wished me luck and ominously told me to come back when I "get worse".
     But what I really wanted to tell the student was to be careful at which altar you worship.  Our precious medicine is not always as hard and fast as we've been taught.  For instance, cardiovascular disease is the number one killer in the western world.  You'd think we'd have a very firm grasp on that with it being the number one killer and all.  And yet, when somebody decided to ask the question, how many of the things we preach to patients about avoiding heart disease are really based on solid evidence, the answer was less than awe inspiring.  About 300 recommendations.  Out of 2,700.  About 1 in 10.  What's worse is that more and more recommendations are being added and, "The proportion of recommendations for which there is no conclusive evidence is also growing."  So when my dad got a lecture from the cardiologist about changing his diet, I told my dad that statistically speaking, 9/10 were based on weak data or worse, "expert opinion."  (Actually, it was all nonsense.)

eternal vigilence

     It did not begin with a phone call but instead a text.  I glanced down at my phone which is never more than a step away from me.  It's been that way for at least four years now.  I read the text from my mom, roll my head and mumble quietly, "Ahhhhhhh, shit!"  I did not need this.  My son had been off one of his medications and was just getting back to some level of stability and now this.  But I remind myself that though I don't like my role, neither does anyone else.  My dad didn't want cancer.  My mom didn't want to always being worrying about his health.  And neither one wanted to "bother" me knowing full well the fury that would be unleashed if they didn't bother me.
     My mom was texting me that my dad had been running a fever.  While not a Luddite, I am skeptical of a lot of gadgets because they just don't work well (the home electronic blood pressure cuffs are absolute crap, especially the wrist ones).  Give me an old mercury thermometer and I'll tell you with both great precision and accuracy the actual temperature.  I told my mom to wait 15 minutes.  Measure it three times on my dad.  Then measure it three times on her for comparison.  Get back to me.  His temperature was consistently about 2.5 to 3 degrees higher than hers.  I call them and start the rapid fire questions that I can now do in my sleep thanks to my training, "nausea, vomiting, diarrhea, muscle aches, congestion, blah, blah, blah."  In the background I hear my dad state loudly only half joking, "I'm not going," meaning the ER.  Well, now this requires a house call.
     I drive over to my parents and perform a quick exam on my dad.  "I don't see any signs of a URI (upper respiratory infection) or anything going on with your lungs.  But you are definitely DEHYDRATED big time."  He had also slept 18 of the last 24 hours which was more than unusual for him.  I show my mom how to tell that he is dehydrated and she proves to be a quick study. 
     Back and forth we go.  It was clear that none of us want to have to go down to MD Anderson's ER.  My dad just celebrated his two year old birthday from the stem cell transplant.  He's still feeling elated about reaching that milestone.  Now that gets destroyed by a little on-again off-again fever?  I'm known for being blunt sometimes and this is one of those times.  I tell my dad, "look, you and I both know that this is probably some virus that will just run its course, you'll sleep it off, and you'll be fine.  But there are a long list of things that are unique to you that can kill you.  I have neither the emotional energy nor the patience to go over that list.  Unless you want me waking you up every hour to check vitals on you, you're going to the ER.  And I ain't taking vitals every hour tonight."
     My dad listened to reason and decided that he did need to go.  He was not being unreasonable.  He was just so disappointed.  He wondered aloud, "is the rest of my life going to be like this?  Everytime I get some bug that causes a fever I have to go to the ER?  No matter how long it's been from the SCT?  You wouldn't go to the ER for the same symptoms."  He knew the answer before I even said it.  It's the price of living with cancer.  And I don't care what kind of cancer you have.  You'll notice that reputable cancer hospitals NEVER use the word "cure".  They use the word survivor.  Because they know that there is always the chance it will come back.  Or, a different cancer altogether as a result of all the mutations that the chemotherapy and/or radiation caused. 
     The price of liberty is eternal vigilance.  Nowhere is that more true than in a cancer survivor.  Every cough, every sneeze, every new backache must be analyzed through the lenses of "is it coming back?"  You and I take these things for granted because they will not kill us.  But not the survivor.  No, they must be eternally vigilant.

match day

     Someone interrupted the leader of our workshop, "can we have 5-10 minutes to check our emails and call family and friends?"
     March was all workshops.  No clinic, no hospital, no call, no nothing.  Match Day also occurred during March.  It's that nerve wracking specific date when a graduating student finds out where they're going for residency.  Not graduating until December, I had no emails to check, no phone calls to make.  I was envious of their station.  I should be in the same place.  Looking back, I know that the wear and tear of emotional tragedy piling up one after another caused me to need a break.  Everyone I trusted said I needed it.  I even agreed.  Logically, it was the sane thing to do.  But it still did not lessen the sting of that day.