Lose the Cane

      So picture this: you walk into your bathroom, turn on the faucet, and only hear a hissing sound.  Was something going on with the water?  And if you're thinking like Rebecca Fogg, your next thought might be to flush the toilet, just to check.  Which is what she did.  And which is when her toilet exploded, as in bomb exploded.  The chunks of porcelain flew by in an instant, which is also when she noticed the blood in the wall.  Where was that from?  Looking down, she saw that her hand now dangled loosely, partially severed near the wrist.  As she wrote in her book, Beautiful Trauma: I tear into the bedroom, hunt for the tabletop phone with my left hand, and dial 911 while heading back to the kitchen.  I struggle to keep the phone pressed between shoulder and ear as I yank a dirty dish towel off the oven door handle and crumple it into my right wrist.  Saturated with blood in seconds, it lands with a splash when I dash it to the floor.  I fling open a cabinet, grab a clean towel, and try again, but the blood soaks through that one, too...Concurrently describing the nature of the emergency to the 911 operator, I can only convey its magnitude by verbally tracing the trail of blood, which is sprayed in feathery arcs on the walls, dribbling down the floor molding, gumming up the keys of my laptop, soaking into a basket of clean laundry, painting traffic lines on the rug, pooling in my shoes on the floor.  And yet, I feel no pain... Still, my brain insists on one further second of reflection to mark an irreversible transition: The life I've been living is over.  The next one, however long it lasts, begins now. 

    Matt Hay had similar thoughts as he pondered what he referred to as the soundtrack of his life, a topic my wife and I shared with a friend recently.  The premise was that hearing even a snippet of a song has that ability to instantly transport you back to an certain moment in your life, perhaps a first love or a beautiful day, a party or a tragic meeting.  So, Hay asked, what brief pieces of music would create your story, bring back those memories so deeply etched as you transitioned through your own life?  But the thing was, Matt Hay was slowly going deaf, something he suspected but denied since childhood.  As he wrote in his book, Soundtrack of Silence: Songs are like pages in s scrapbook, each igniting an emotion from the past.  But when that person whose life is laid out on those plans can no longer hear --when the sounds that jar the memories slip away like a friend's voice in a passing car-- the scraps within that book suddenly stop.  One page is filled with vivid recollections.  The next is vacant and white, all the "misty  memories/ of the way we were" faded like photos in a ceaseless rain.  Deafness is hard to describe because it's impossible to stimulate.  Ears don't have eyelids.  You can't remove your auditory receptors for an hour or two just to experience what it's like...There is a good chance that it is your story and your journey, too, whether or not you have all five of your senses.  You don't have to lose your hearing to feel like you've been dealt a bad hand... sometimes in life, it's okay to ask for new cards.  For Matt Hay, the diagnosis was neurofibromatosis type 2...he had tumors on his auditory nerves, ones that would require many rounds of surgery.  As the doctors told him, he: ...was eventually going to be deaf: not "hard of hearing," not "crank up the volume another notch or two," but stone-deaf.

     Both are worlds I don't relate to, not because of a lack of empathy but simply because I've never had a crushing jaws-of-life car accident or a gunshot wound that would find me being wheeled on a gurney in an emergency room as worried medical faces fawned over my chances of survival.  And neither did I understand the nuances of hearing loss.  Certainly many of my friends wore hearing aids, or didn't but leaned in a lot more during conversations (many did that even with hearing aids).  But I was an outsider in the words of Matt Hay: People on the outside view hearing loss as a constant downward plunge on a graph.  You hear fine one day, and the next day it's a little worse, followed by a steady decline until you wake up one morning and the world is silent.  That's not how it works.  Instead of a plunging line on a graph, hearing loss is kind a roller coaster.  You get hearing aids, and you start the slow, upward incline --clack, clack, clack-- as your brain adjusts to sounds you had forgotten existed.  The more adjustments, the higher the hill gets.  But eventually hearing loss outraces technology, you crest the hill, and you leave your seat as you plunge downward.  The decent is always faster.  Then some new technology comes along.  You level out and start another slow climb.  You level out and start another slow climb.  The thrill of going up causes you to relax and take a breath, maybe look around at the view.  But you know what's coming.  You've been on this ride before. 

     From the moment of my fall, I knew that I was fortunate.  My hip, or anything else for that matter, didn't feel "broken;" my head wasn't bleeding, my leg wasn't squished to a pulp or missing.  Six weeks I was told...my type of injury would typically take six weeks to heal.  And once the first ten days passed, days which crept by as if my life ahead felt as if it would be headed toward a permanent change, I did notice improvement.  Still, I found that I clung to handrails with a grip far stronger than I did before, and walked down stairs backwards, one step at a time.  Those almost threatening warnings from the docs, Don't Fall Again, kept echoing in my mind.  As one doc put it, "Then you'll really know pain."  Early on, the jolts and shocks throughout the day seemed to laugh at the clock as I counted the minutes until I could take another dose of ibuprofen.  But soon that began to ease up.  And yet even with a month passing and me feeling a bit more blubbery and wanting to do a bit more activity, I knew that I would recover; my "injury," as monstrous as it was to me, was nowhere near bad enough to need a morphine drip or regular doses of narcotics such as oxy or hydrocodone.  And six weeks was a rather short time overall when compared to those who faced months or years or even never before seeing any improvement.

     But I did wonder about what I would do if I the roles had been reversed, if I were the one with an arm barely hanging on, or I were the one facing impending deafness?  Or going blind?  Or waking up suddenly paralyzed.  What would my planned "future" now look like?  Some of this came to mind in the Swedish film, Breaking Surface, a film about two sisters who are experienced divers but have to enter survival mode when a large rock breaks off the cliff above and crashes into the water, pinning one of them at the bottom.  They are diving in a remote area, and their spare tanks on land also fell victim to that rock fall.  Although it all takes place in the water, it will bring back thoughts of Alien in that tag line: in space no one can hear you.  An accident in the middle of nowhere, or only a few minutes to wrap a wound before you pass out from losing blood, or alone with your thoughts that your "condition" is likely not going to improve.  Now what?

     So picture yourself as the star, and not only the star but the star of an NFL team, and picture yourself on that team in New Orleans, and picture yourself playing in a home game just after Katrina hit, a time when the city needed something positive, something to show that there was hope going forward, and picture yourself blocking a punt that your team recovered and subsequently scored a touchdown, and picture yourself being cheered by 83,000 fans as that touchdown wins the game.  And you were the star that did it.  Now picture yourself finding that after all of that, that top of the world high, that you have been diagnosed with ALS, amyotrophic lateral sclerosis, Lou Gehrig's disease, a disease that slowly and inevitably destroys your nerves and will eventually rob you of the ability to breathe, a disease which is always fatal.  Now picture yourself writing a book, a 300-page book, letter by letter and using only your eyes to direct a computer typing program.  When the NY Times asked Steve Gleason what it took to write in that manner, he replied: In a word…everything.  I type with my eyes, letter by letter, so to write this, it took a physical toll to write for several hours each day for two years.  It took patience and discipline.  People often talk about “writer’s block,” but I think I experienced something of the opposite thousands of times over the past couple years.  Ordinary writers may have a wonderful idea to get on the page, then they quickly write it down.  But I type so slowly that the wonderful idea that was so vivid and clear eventually slipped into the fog as I trudged and typed...There were a couple years, as I was losing the ability to move, talk and breathe, that I felt so lonely, ashamed and weary that I was ready to give up and die...Viktor Frankl’s “Man’s Search for Meaning.”  His words helped me choose life.  As Gleason wrote in his book A Life Impossible: Today, I'm well past the point of being able to move talk, or breathe on my own.  The powerful legs I once used to race downfield on National League Football kickoffs are now withered.  My arms, once muscled and ripped, are now frail and motionless.  My 5-foot-11 frame, once a strapping 210 pounds, is now an emaciated meat sack of flesh and bones.  I've lived in a wheelchair for more than a decade.  I've lived on a ventilatot since 2014.  But as he said in a New Orleans interview: It's not a book about ALS.  It's not a book about sports.  And it's not a book about dying. This book is about living.  

      Gleason continued in his book, describing a bit of his heartbreaking reality: One of the realities of my life is that I've never hugged our kids, or more importantly, Rivers and Gray [his children] have never been hugged by their dad.  Ever.  If you saw your daughter weeping in the middle of your bathroom floor, wouldn't you pick her up?  Or raise your voice and call your spouse to find out what was going on?  If you were my wife, wouldn't you like to hand off your crying three-year-old to your able-bodied husband for some respite?...I wept, my tears matching Gray's.  While she wailed audibly, my heart wailed silently inside my chest.  I tried to scream from the depths of my pain.  Nothing.  A second effort.  Silence.  My emotions had no outlet.  In addition to the human desire to prove ourselves, it's also normal for humans to distract ourselves or take flight in order to escape our pain.  But...there is no escape for me.

     And speaking of me, let's selfishly get back to me, or you.  We are (for the most part) the fortunate ones.  We aren't on a ventilator or facing such life-changing crisis; or even facing tiny tendons and nerves having to be re-connected and hoping that they'll work (as author Fogg's remembers her surgeon explaining it: Tendons are strong but slippery, and they are small at the wrist, about the width and shape of two pieces of linguine, stacked.  And while the median nerve at the wrist is much thicker than the tendons there, it's laughably fragile -- like overcooked pasta wrapped in wet toilet paper.).  During these past few weeks, I've hobbled along, swaying a bit and using a cane for stability.  I was even able to accompany my wife in walking the dog, albeit often on shorter walks than usual.  Which is when I went to the physical therapist and he told me, "Lose the cane."  Wait, what??  "I've watched you walk and you walk better without the cane."  Hmm, but the stairs, the uneven patches in the lawn, the steep driveway we had.  "Just be careful," he said; "we'll start with the basic exercises then work on building back your strength."  And that pain I was feeling after sitting for an hour or so; was I aggravating the fracture?  Yes, he said, it's called the sit bone for a reason, pushing up on that fracture; but most of that pain you're feeling is coming from all the muscles that meet there, all screaming for attention  you can see this on the diagram below, one I took while in the doc's office).  Which is when it all dawned on me again at just how delicate our bodies are, and an engineering feat of structure.  To think that standing and walking, running and sitting, much less breathing or bending, climbing or reaching; all of it comes without a second thought to most of us.  But on those rather small feet of ours rests our entire weight; and on that pelvis rests a structure that needs to support that entire upper torso when it bends or moves or even sits.  A break in that structure, even a tiny one such as mine, makes the entire body yell out STOP.   And since most of us won't listen, it sends out those regular reminders of pain that is needed to get your attention.  And all of it somehow works.  So yes, I was fortunate, as are most of us.  We are free to think about the latest Netflix special or shop the latest sale or trend.  We can plan ahead for the trip some months down the road, or that dinner with friends.  There was a line in the Stephen Sondheim song, Send In the Clowns* that said: Isn't it bliss, don't you approve?  One who keeps tearing around, one who can't move!  

    Author Hay perhaps aimed up this unknowable when he wrote: What happens when circumstances are beyond your control and you must face an inevitable outcome with no recourse or answers?  People have been asking that question as long as humans have existed... What do you say to those who count on you for their survival?  What do you do when your home and family are swept away in a flood?  How do men and women handle hardships they cannot control, tragedy they cannot change, or hurdles they cannot clear?  We all like to believe that we would be noble heroes in the face of certain doom, that we would all be King Leonidas leading the the hundred Spartans into history at Thermopylae.  The truth is, you don't know until you are there, until you face that tiger and look him in the eye.  As much as we would like to think we would be the fearless warrior, those people who do miraculous and heroic things will tell you that they were scared to death and just did their jobs anyway... people do what circumstances demand.  And in most instances, they are petrified by fear the entire way.  Author Gleason noted a quote from the Buddha: Whatever has the nature of arising has the nature of ceasing. 

     My pain and fracture are healing, and it has left me with empathy and understanding for others, not only for those who have lost or broken something, even mentally, but for a perspective of how quickly life and its routines can change.  Live each day becomes a mantra you're sharply aware of once you can't do that...exercise, eat, sleep, talk, hear, laugh, enjoy...breathe.  So in a small, small way, I find that I can now honestly tell a few people, I feel your pain.  Not totally, of course, and not even that "I've been there."  But I'm now more aware of being one of the lucky ones, one of the ones who will heal, one of the ones who wasn't alone and who had a loving wife and friends and docs to help with this "minor" injury.  Even as I age, I am learning that having another perspective --from a loved one, from a friend, from a physical therapist, even from life itself-- there is still much for me to learn...

     

*Judy Collins, often credited with popularizing the song and possibly putting Sondheim "on the map," said in an interview that Sondheim disparaged the song after writing it for the musical, A Little Night Music, saying: ...he hated the song...everybody said, “Ah, that’s a crummy song that’s in there, why don’t you go home and write a song tonight.” So, he [Sondheim] did.  He went home and wrote this song and he brought it back to Hal [director Hal Prince] and he said, “I want you to know, I don’t think much of this song.  It’s not a very good song.”  On a personal note, and realizing that there have been well over 200 artists who have recorded the song, my favorite version remains that done by Perry Como, live on tour (Como died at 88 of Alzheimer's).