The Bliss in Making the Journey Alone

I went through the infusion of Round 5 of Chemo this past Monday mostly alone, with a dear friend coming at the tail end to take me home.  Usually Josh meets me at the cancer center some time before the infusion starts, but this past Monday he had a $100+ million deal signing and he couldn’t leave the office.  I told him not to worry about it.  I come from the world of big corporate law so I understand how it is.  $100+ million isn’t that much money in that world, but it’s significant enough where clients have expectations.  In response to his self-inflicted guilt, I reminded Josh that work, and more importantly bringing in an income to pay for health insurance and the complementary treatments not covered by health insurance, is more important than ever now.   Besides, this was just one out of twelve chemo treatments; it wasn’t surgery; it was no big deal.  Even with the cloud of cancer hanging over us, life (as distorted from everything we once knew as normal as it may now be) must go on — the children must go to school, the conference calls must take place, the bills must be paid.

Despite my nonchalance, I was sad and Josh saw through the bravado.  I had gotten used to Josh being around for my chemo days, just as he’d been around for all the days and nights in which I was in the hospital and for the many weeks afterwards, while I physically recovered and we together struggled to come to terms with our new life.

So on Monday I was alone when my blood was drawn for the usual tests.  Lunch — mediocre Thai food from somewhere down on Third Avenue — I ordered and ate by myself as the Oxaliplatin and Leucovorin raced through my veins.  I was alone when the nurse told me that my CEA (a colon cancer tumor marker) results were back.  I sat in my recliner by myself as the sick feeling in my stomach dissipated and processed alone the information that it was 19.8, barely a one point drop from last month.  “Are you okay?” the nurse asked concerned since I’m sure the disappointment and anxiety were plainly planted all over my face.  “Yeah…Yeah…I’m fine,” I weakly reassured her as a million thoughts ran through my head.  Six point drop in the first month, but only one point in the second — what does this mean?  Is the chemo becoming less effective?  Maybe, I’ve deviated too much from my diet, too much sugar consumption.  Maybe, I’m not meditating or working out enough.  Maybe the spots on my liver have become cancerous.

Josh called to check in at some point, and I told him.  Maybe I shouldn’t have since he had a big conference call within minutes, but I know I would want to know if our roles were reversed.  “What are the doctors saying?”  Get C on the phone and demand some answers!” he ordered me.  He called me ten minutes later and informed me that based on his quick research we shouldn’t be so concerned, that effectiveness of chemo is not necessarily reflected in the proportionate linear progression downward of CEA — that’s my brilliant husband for you — there are simply not enough words to convey how much I love him.

I was sad that Josh didn’t make it to chemo on Monday, but I think it was a good thing for me.  Being alone reinforced something I’ve been feeling — and denying — for quite some time now.  As terrifying as it is, battling cancer is an individual journey and the individuality of it is what I must come to embrace.  Indeed, each of us as we walk through the journey of our lives does so alone.  Sure, there are parents, siblings, cousins, friends, lovers, children, coworkers and many other people who fill our lives and sometimes their presence and chatter can make us forget that our journey is solely our own to make of as we will.  But the truth is that we each enter and leave this life alone, that the experience of birth and death and all the living in between is ultimately a solitary one.  While Josh may understand to some degree the distress over a CEA count that isn’t dropping fast enough, he cannot know the depth and breadth of what I felt when I heard the news nor what I feel on an ongoing basis (nor can I truly understand his emotions).  When the oxaliplatin brought on an episode where I couldn’t breathe two weeks ago while pushing Belle to school in her stroller, I endured the panic alone and found by my own will the calm within to get Belle to school and safety and then myself to the doctor.  Similarly, while I may be able to relate to some degree to other young mothers as they attempt to cope with their cancer diagnoses, our emotions are somewhat different because they have been informed by vastly different life experiences.  I try to share my cancer fighting journey on this blog with the best words I can think of to convey the complexity and nuance of the onslaught of emotions, but words have their limits.  No matter how much I would like to take Josh and all of you who support me on this journey, I simply cannot.   And I confess — I am afraid of making this journey alone.

That’s hard for me to admit.  I have always prided myself on being good at being alone and knowing that I was one of those few people (not troubled by social disorders) who found deep joy in being alone.  I thought I’d mastered the art of being alone through my solitary travels throughout the world.  It’s the memory of those solitary wanderings that I am now turning to to quell the fear I have of making this newest journey by myself.

Before I turned 31 I had set foot on each of the seven continents.  Maybe I’m cheating because I haven’t actually been to the country of Australia yet, but I have been to New Zealand, and I think New Zealand must be part of the continent of Australia.  New Zealand / Australia was the last on my list.  I hiked for two weeks through the South Island  in November 2006, going from one cabin to the next (New Zealand has an elaborate, although still rustic, cabin system that obviates the need for camping — a good thing as far as I’m concerned), carrying my own gear on my back (with the exception of a few pounds which others who took pity on me shouldered for the duration of the trip).  Josh and I had been dating six months by then and within 3 months we would be engaged.  Despite our budding romance, Josh did not go with me to New Zealand.  I didn’t invite him and he didn’t ask to come.

Josh understands how possessive I am about my solitary travels, how jealously I guard my experiences traveling around the world.  I almost always went alone (meaning without anyone I knew before the start of the trip) and as alone as possible given my own physical limitations.  I went to New Zealand with a non-profit dedicated to making the outdoors accessible to people with all kinds of disabilities called Wilderness Inquiry — it is truly an incredible organization.  I went to South Africa in 2004 on safari with the same outfit.  I went to Antarctica in 2005 with a group based out of Connecticut that specializes in polar expeditions without any luxury or frills.  To South America, Asia and Europe from 1995 through 2004, I generally went either as part of study abroad programs or solo backpacking adventures, with, as my trusty companions, my Lonely Planet guidebooks to tell me where to sleep and eat and what sites to visit, a magnifying glass for reading the small print on maps and binoculars for all the street signs and plane and train announcements I couldn’t see.

I know there are those who think I was nuts for choosing to travel by myself and for actually liking it, even putting aside the fact of my limited vision; I know Josh must have thought this when he first met me.  Eating breakfasts, lunches and dinners of foreign foods alone, wandering the great ruins of the world alone, getting lost in a strange city in the hunt for that night’s accommodations in the growing dark alone, riding on boats, buses, trains and planes alone with no idea of who I would encounter next or of the future that lay ahead.  You see, traveling alone was my bliss.  Some people turn to mind-altering substances.  Some skydive.  Some play with fire.  Some make fancy wedding cakes.  I chose to travel the world to chase euphoria.  Beyond the bliss that came in beholding the divine and breathtaking beauty of our planet’s terrain and wildlife and the man-made creations of the geniuses who have come before, traveling alone to the seven continents represented a deeply personal journey that soothed and empowered my soul, quieting the anger and self-doubt and imbuing my spirit with a sense of unparalleled strength and independence in a way that no one and nothing else ever could.

From the moment I was old enough to think about college, I dreamed of going far away.  I ended up at Williams, a little college nestled in the Berkshires in western Massachusetts, famed for its vibrant fall foliage and notorious for its frigid winters.  Williams was as far away from sunny Los Angeles as I could have imagined.  Even as I cried that first night in the dorm, having said a tearful goodbye to my mother and sister, I still longed to branch out.  I told myself that night that despite my homesickness, I would get over it and then I would study abroad my junior year.  I ended up studying Chinese in college and spent my junior year in Harbin (an industrial city in northeast China known for being the first stop on the trans-Siberian railroad into Russia) and then Beijing.  That year during the months off between semesters and the periodic week-long breaks, I hopped on all manner of transportation to far flung provinces, listening to crowing chickens as I rode down the Yangtze River and gaping in amused horror as the door fell off the minibus taking me and a bunch of locals through the mountains of Gansu Province.  Thus began my love affair with traveling the world alone in search of my bliss.

I discovered that year that traveling, and traveling alone especially, made me confront my visual disability as nothing else could.  It’s hard for me to explain how I see the world, in part because I don’t know any other way of seeing.  I can only explain my vision in clinical terms.  I measure 20/200 out of the right eye with corrective lenses and 20/300 out of left eye also with corrective lenses, meaning what a person with 20/20 vision can see at 200 or 300 feet, respectively, I need to be at 20 feet to see.  In addition to that, my left eye muscle is so weak that I almost never use it.  Both measurements qualify me as “legally blind”, which I suppose means that I can comfortably say that I have a disability that must be accommodated in accordance with the law.  These numbers don’t take into account my impairment with respect to reading and seeing things close at hand.  Font smaller than 10 point is a challenge, and even with 10 point font, reading can be a slow process without a magnifying glass.  This is how I’ve seen the world since I was four years old.  These are the limitations that I confront on a daily basis, but nothing — absolutely nothing — makes those limitations more real, immediate or frustrating than when I travel alone, when there’s no one I know to lean on, in a strange place where I can’t speak the language.

Traveling alone was the single most effective and grueling test I could put myself through emotionally, mentally and physically to prove to myself that I could do as much as anyone else could.  As I traipsed through the hidden back alleys of China’s ancient cities and the winding medieval streets of Florence, Italy and the unfriendly boulevards of post-Communist Budapest, searching for a youth hostel, tea house or museum, frustrated and angry at my inability to see the numbers on buildings and read the names of businesses, I learned to control the frustration and the rage at my physical limitations as I had no choice but to find my way for no one was there to help me.  I tapped into reserves of courage and resourcefulness that I would have never known existed but for the fact that I had consciously and willingly put myself into such trying circumstances.  I learned to communicate with strangers with few  words, with gestures and body language.  I learned to gauge the four corners of a compass by the position of the sun.  I learned to stay calm, to be patient with myself, to allow myself to make the wrong turns.  And when I finally made it to the majesty of the Sistine Chapel and stood within the ruins of the Forum, as much as I appreciated what I was seeing, I was more grateful for my own abilities.  The sense of accomplishment in knowing that I had reached my destination by my own doing was always the greatest high I could ever imagine finding — pride in my own emotional wherewithal, my own problem solving capabilities, my own body’s capacity to carry 30 pounds on my back for hours on end up and down stairs and mountains.  In the greatest of ironies, traveling alone made me feel whole and complete inside; it helped to heal my anguished soul that for so long had been obsessed with the metaphysical questions I wrote about in Invictus.

Part of the sense of feeling whole and complete came from the joy of meeting all the new people along the way.  It was only when I traveled alone that I was truly open to meeting people and to learning everything they had to teach me about their worldview.  There was also a tantalizing freedom in encountering those who knew nothing about me.  Much in the same way that a downtrodden guy will spill his guts to a bartender, I found myself confiding in strangers about what ailed me.  In these strangers’ eyes, I stopped being the invalid I’d always known myself to be and I could recreate myself, transform myself into someone brave and smart and funny and engaging.  I’ll never forget the mysterious Swedish girl in Paris traveling alone with a broken back in a wheelchair with whom I shared a hostel room for one night; she told me that I was worthy of love  — I know how cheesy that sounds but that kind of cheesiness is okay when you’re traveling around the world on your own.  Or the compassionate Dutchman who took the time to describe to me the details of a seascape he saw with his photographer eyes.  Or the tortured Turkish-American girl who dragged me to all the techno bars in Beijing as if the loud drumming music would drown out the things that haunted each of us.  All of these people whose threads of life have touched mine, whether I’ve stayed in touch with them or not, taught me about different ways of living, thinking and being, and in doing so, enriched my consciousness and touched my soul.

I haven’t traveled alone since my trip to New Zealand.  I convinced Josh to go to Egypt and Jordan for our honeymoon and I even dragged him to China before Mia was born.  We went to Puerto Rico when I was pregnant with Belle and stayed in a resort for a week.  Now that I have children and am a little older, I’m not sure I would take the risks I once took to save a few bucks or have a crazy adventure I could laugh about years later.  I’m out of practice when it comes to traveling alone.  I’ve gotten used to Josh being my eyes.  I’ve gotten used to him guiding us through airports while I deal with the children and follow him unquestioningly.  I’ve gotten used to traveling with my little nucleus of a family and making our little trips about getting through flights without children melting down and making sure that there are enough snacks to hold them over and finding child-friendly destinations where there can be no surprises and to which there can be no wrong turns.  Life and priorities have changed since November 2006.

I’ve gotten weak and soft over the years and now I don’t feel entirely ready to tackle this new phase of my life, this newest journey upon which my life hinges that requires more bravery, strength, resourcefulness, calm and grit than I have ever had to display.  Unlike my journey to the seven continents, this cancer fighting journey is not one that I chose as part of some self-selected test to prove my worth.  This came at me and caught me off guard.  This time I don’t feel the invincibility and freedom of youth.  This time I have the lives of a husband and two little girls to consider.  This time the stakes are much much higher.

Yet, the bliss that can come from my cancer fighting journey cannot be so different from the bliss I once knew traveling the world.  There are extraordinary people who have been met and who are yet to be met on my present course.  There are lessons to be learned, resourcefulness and discipline to be cultivated, good to be done, and courage, strength, grace, resolve and pride to be gained. I know this to be true.  This is what I will remind myself when I go in alone for my first PET scan next week and as I listen to the doctor tell me the results.  This is what I will tell myself during all the future CEA tests and chemo treatments to come.  It really is okay for Josh to not be present for a chemo treatment because his absence reminds me of the importance of being alone and honoring that solitude.  All of it is part of my solitary journey, a journey that I embrace wholeheartedly and with as little fear as possible for I know that through my wanderings I will find my own unique bliss.


1 Comment (+add yours?)

  1. Shan
    Oct 12, 2013 @ 13:43:58

    SO beautiful Julie. What a great post (as always).


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