Strong in the broken places

I can't believe it's already September.  While, for us, it feels like we're walking through quick sand, the time seems to be passing by.  We draw some parcel of relief from routine; at the same time, routine is the pest that leads us so quickly towards another tomorrow.  The routine we've sculpted from all this chaos gives us the illusion that all is normal, and that life won't change - at least for now.  But, it's easy to become complacent in the midst of routine.  We fill our time talking politics, reading books and watching mindless television shows like Meerkat Manor, Ice Truckers, Animal Cops, and CNN.  Everything is so painfully the same.  We could leave; we could give ourselves permission to spend some time away from cancer, to take a break and head to the gym for a few hours.  But, we choose not to.  Though I get out from time to time, for me, being away for long stints is stressful.  I'd rather be here by Craig's side.  The gym will be there every day beyond this; Craig may not. 

So we stick to what we know best -- routine.  Mine begins with a quick read of the New York Times and Wall Street Journal to prep before briefing Craig on the day's events.  Before cancer, Craig and I would spend hours waxing on about political events; I suppose filling him in is derived more from nostalgia than his burning desire to know what's going on.  Craig could probably care less about Bangkok's political crisis, or how nitrogen is worse than carbon in advancing global warming.  Rambling on as usual allows me to feel connected to Craig as if nothing has changed.  A quick glance at his face is all that is needed to remind me that, in fact, everything has.   Now, Craig spends most of his time lying in bed, with his eyes patiently fixed on some unknown spot on the ceiling.  (We learned today that he's been seeing images in the ceiling tile.)  His body is packed in by pillows to help prevent against bed sores.  His face is paler, and his hair an ashen gray. 

Cancer has divided our whole lives into a before and after.  Positions and practices have been redefined, and once familiar routines have long been forgotten.  Personalities have changed; once talkative and outdoorsy, we've become somewhat reclusive and distant.  Though we still laugh, there's an underlying seriousness to each giggle.  We're all sporting a new haggard appearance with wrinkles and gray hair the defining mark.  If I had a dime for every time one of us said "shit, I look tired" I'd be rich. 

Long-held dreams have also been rearranged.   Zora Neal Hurston said it best:  "Ships at a distance have every man's wish on board.  For some, they come in with the tide.  For others they sail forever on the horizon, never out of sight, never landing until the watcher turns his eyes away in resignation, his dreams mocked to death by time.  This is the life of men."  For Craig and Mom, some dreams never made it ashore.  Ideas of settling down and starting a family have all but been erased for Craig.  So too have hopes of advancing his harmonica skills and traveling (other parts) of the world been dashed.  For Mom and Dad, gone is the thought of spending retirement with a lifetime partner, and of shuttling between children, grandbabies, and travel destinations. 

In the face of such change, it's sometimes hard to remember what life was like before cancer.  The time when we were six people living individual lives seems so long ago.  The days of teaching and jobs and endless papers have given way to family time, and to fighting cancer.  Our lives have seamlessly merged; for us, there's strength in numbers.  For me, there's no other place I'd rather be.  Still, there are occasions when memories of life pre-cancer flash forward.  Like when, a few months back, Diane said I looked all of 22 and like I was about to rough someone up.  I was wearing Erin's OK-State hoodie with jeans, and, I suppose, looked a little young.  Though I wasn't much of a fighter back then, her comment brought me back to my college days when Erin and I would run around Stillwater saving the world while wearing ball caps (more the river guide look than an MLB player).  Our energy was endless.  We could juggle school, jobs, and extracurricular activities and still have energy to hit the gym every night.  Those were the days when we could sit in one position without getting sore.  Shoot, we were even flexible.  (Lord, to be able to touch my toes now.  In the words of Garth Brooks, "I'm much too young to feel this damn old.") 

I remember listening to a song one night as I was driving back from TGI Fridays towards the hospital.  It was an Ani Difranco song I used to listen to when I lived in the East Village.  The song has a nice horn section, with a beautiful harmony.  While listening, I couldn't help but get a bit teary eyed when I considered how life had changed.  Everything seemed so ahead of me then, my life trajectory so clear.  It made sense.  At one point, life seemed to be skipping down a straight path, and then, unexpectedly, the trajectory changed. 

Craig's trajectory has changed more than anyone (except Mom).  Just a year ago, he was beginning a career with the US Trustees.  Work is now impossible; so too is writing.  Craig was three-fourths finished on an article exploring the economic loss rule -- Craig has already published one well-received paper on the topic -- before falling ill.  Finishing is now a distant dream.  Craig was also playing harmonica and settling into a long life in Denver.  He was taking guitar and voice lessons, and learning how to dance.  He hasn't the energy to resume those activities now.

Craig was a talker before cancer took his voice.  He used to be so longwinded in his conversations, we always joked that you could put the receiver down, go to the store, load up three carts and return home to find him still talking.  He had a distinct voice, and a contagious, nose-flaring laugh.  To hear that strong voice now is a rarity; his laugh has also changed.  It's more a forced chuckle similar to Mom's when she fell ill.  It's often hard for me to remember how his voice sounded before all this; the memory is so distant at times.  Sometimes, we'll catch glimpses of the "old" Craig, but those moments are fleeting.  Occasionally, Craig will say something so characteristically him that it catches us by surprise.  I often wish I could capture those moments, as if to preserve them as little keep-sakes of the way things used to be. 

Craig was a passionate politico.  Craig and I could spend hours discussing the political history of SE Asia, or the pros and cons of China's emerging hegemony.  While watching CNN's coverage of the DNC, I asked Craig if he ever envisioned a career in politics.  He said he had once back when he was involved with the Young Democrats, when he was more inspired and politically active.  Then, as he said, "I grew tired of it."  Now, he can't be bothered.  (I don't blame him.)  Cancer has forced Craig to adapt his interests.  His eyesight is too poor for him to read and watching politics puts him to sleep.  His world is much smaller; life is more about getting through the day without pain.  He rarely leaves his 3X8 bed.  As his belly grows larger, his arms and legs grow thinner.  For a guy who swam two hours every day and weight lifted every other, sitting idle is like preventing a horse from running.  Gone, it seems, is the old adage that a healthy lifestyle extends life. 

Recognizing the changes sounds like I'm harping on the negative and treasuring times of the past over what we have now.  In reality, what really matters is that we're here together, and that Craig is able to live the rest of his life in comfort, and according to his wants and needs.  Though it's harder for Craig emote as he once did, Craig is still Craig.  His voice, laugh, and personality may be buried by drugs, cancer, and related symptoms, but he's still there.  We are screaming towards a reality no one is prepared for - not least is Craig.  In the process, we've all inevitably changed - for better or worse. 

A few weeks ago, the NYT published an article by a cancer survivor on getting back to the way things were.  As I read her story, I thought to myself, is it selfish to yearn for a perfect reflection of life before cancer?  Is it naïve to think that change can be reversed, that old selves can resurface, or that life as usual can be jump started?  What if the person that emerges from it all is somehow stronger, with a better understanding of what's truly important in life?  Can pining for the past overwhelm the process of living? 

Memories help create the future.  They lay the foundation for moving forward.  At the same time, people can't be faulted for thinking about turning back time.  I'd give anything to go back to the hearty horse laughs and mob-like bonds; to the routines and predictable personalities and steadfast trajectories of bright careers; to the energy and health and gray-free hair of our youth; and to hearing Mom's "it's okay, sweetheart" and believing that what she said was true.  But, as much as I'd love for this to be a bad dream, ignoring the pain and grief is as self-destructive as wishing that cancer never happened.   It did.  It has changed us as individuals and as a family. 

People can spend their lives avoiding the broken places, as if knowing internally their own destiny, guarding themselves against any pitfalls.  But, the broken places can be as rewarding as they are unavoidable.  As Hemingway says, "many are strong in the broken places."  You learn how to make do.  Though, there is some aspect of wanting to rewind to a point when Mom was alive, and everyone was healthy, we live with the balls as they lay, not how they were minutes before.  Dreams of long lives together have been modified; perspectives have broadened; and, in a way, life has become much simpler.  There's a certain clarity that comes with such change.  We could spend energy yanking things around to our way of liking, or be at peace with what is and come to terms with our ever changing lives. 

I don't pretend to know, nor do I have the context or space to find, all the answers.  I suspect some answers lie somewhere in between.   We'll continue to adapt and evolve, and in the process, find some of the answers.  This has been a long, hard road for us all.  I know that our love and commitment will keep us strong in the broken places -- even in the face of change. -- J