Lost

March 12th, 2018

I am lost. There are times when I touch into familiar territory and rest there for a while, however when I peel away the surface crust of my now wearing-thin coping patterns I feel the raw underbelly of not knowing. Not knowing what to do, where to go, what to think, which path to take — I am lost. Navigating the cancer world, medicines, cures, remedies, doctors, nurses, bureaucracies, specialties, rules, time lines, wildly varying success and horror stories is for me like wandering on a foreign planet. My relationship to my body-myself is altered; different, strange and mysterious.

My honest answer to the question “How are you?”

“I don’t know.”

Being lost is not completely new to me. I’ve not been blessed with a well-tuned sense of direction and over the years have become accustomed to getting lost when driving or walking.  I’ve even joked about it being a skill and pretty predictable that if I am drawn to go in one direction it usually indicates the other one is correct. I’ve also laughed about how when I am lost driving my car or walking somewhere I speed up, based on my thought that if I go faster I will get un-lost sooner!  Not this time.

My earliest memory of being lost is a combination of the story I’ve been told and my own impression from flash memory vignettes. According to what I was told by my mother from the time I could walk I had a habit of “running away”, which led to her actually putting a leash on me. That I don’t consciously remember, which I am somewhat glad about.

A clear memory I do have is from when I was about three years old. I was alone, at the bottom of a dimly-lit staircase looking up. At the top of the staircase was a partially open door with a back-lit woman standing there holding it open. She was wearing a beautiful, long, dark green silken robe, sunlight highlighting her hair and I was in awe. She had a soft, kind voice and beckoned me up for an ice cream cone.  I remember beginning to climb the stairs.  The next thing I remember is being in pain and terror as my mother was dragging me by one arm along a city sidewalk outdoors. She was furious, I recall the din of her voice. I thought my arm was being severed from my body as my feet were barely touching the pavement and just couldn’t keep up.  I had no clue where I was, what was happening or why this was happening. When I remembered this years later and asked my mother about it, I was told that I had run away yet again and wandered into the red-light district of Philadelphia. The kind lady had called the police and somehow my mother came to get me. What occurs to me now is that to my mother I was lost. From my perspective I wasn’t at all lost, just on a wondrous adventure — until I was found.

As I reflect over my lifetime through the lens of lost experiences there are several that stand out.

One of the most impressionable was several years ago now, hiking with a partner in the magnificent Anza-Borrego desert in California. We were the only campers at an isolated camp spot, which we had planned that way. Our guide book outlined a trail to a palm oasis which sounded idyllic. It was a blazingly hot day, there was no shelter in our camp area so we decided we would find the oasis and spend the heat of the day there.

We were experienced hikers in all kinds of terrain and conditions, and although we should have known better we did exactly what we shouldn’t have done — lightened our packs by taking everything out that wasn’t essential to our simple hike. We had water, but took out what we considered to be extras for a day hike such as compass, flashlight, map, first aid.

To reach the oasis we hiked beyond the day-hiking trail and were delighted to lounge in serene privacy and beauty amongst the palms. As mid-day passed we blissfully decided to explore outside the oasis before heading back to our campsite.  Maybe you can guess what unfolded from there.

The glorious desert was rivulets of sand between rocks and boulders, there were no trail markers.   We felt the enchantment of making our way through the vast and varying landscape. My partner was the planning master, I placed complete trust in his navigational skills and was happy to be the follower. As the day wore on, he became more silent and began to walk faster and faster, to the point that although I was a strong and rapid hiker myself I was finding it increasingly difficult to keep up.  At times he was disappearing from my view amongst some of the boulders. When I called out to him to slow down, he kept going without reply. I noticed he was going so fast now that at times he was cutting his lower legs on the rocky edges.

I got it — he, and therefore we, were lost.

One of the several lessons from this (realized only later upon reflection) is that the version of blind trust that I placed in him was totally irresponsible on my part. Not only was I not taking ownership of my own safety I was also not contributing to his should he have become injured or incapacitated. I had placed it all on his shoulders. This eventually became a poignant example for me to recognize how that type of trust is an abdication of responsibility that is my participation in becoming a victim of circumstances and leads to blaming someone else. This is not the type of trust that I want to participate in again.

Once it sunk in that we were lost, I coped with my anxiety by focusing on keeping up with him so that we would not become separated. I at least knew that to become separated in these circumstances was dangerous. My fury at him for taking off without me, not communicating and not slowing down to reconnoitre propelled me forward, screaming at the top of my lungs into the disinterested desert.

Eventually he began to tire, I caught up and we got together long enough to acknowledge that we were lost, although for a while longer he was sure that if we just got to the next rise we would see our campsite and be fine. Each rise we hopefully approached simply gave us another magnificent view of infinite desert. It was awe inspiring and, in this circumstance, awful at the same time.

And then the sun began to go down. The air began to cool. We had no flashlights, no extra layers of clothes. Nothing. Those of you who watch sunsets may have noticed that as it nears the horizon it seems to drop down fast. I will always remember this sunset, it was dazzling, painting the rocks and sand with resplendent color. It was the only sunset I’ve experienced with simultaneous appreciation and dread.  My belly sunk with a thud as the sun sunk below the horizon.

By the time it became pitch black we were holding onto each other, picking our way step by step through the rivulets of sand. Our predicament became more and more real as time passed. Somewhat desperately I rummaged through my small pack again and was relieved to discover my cell phone. Fortunately, I had missed taking it out when I was lightening my load.  It was a pre-iPhone flip style that provided a bit of light.  We had to go painstakingly slow as the terrain had become dangerous with sudden drop offs making it easy to take a tumble.

The battery in my phone began to die. Fortuitously by this time we had come to a more even landscape and I was able to shut the phone off for several moments at a time to try to save the battery. During one of those moments I thought I saw a light flicker in the distance off to the right. We looked again, no light, however I was pretty certain I had seen something so we began to make our way in that direction.  Nothing to lose at this point.

Blessed be! I had seen a light. We came upon a group of astronomers who had gathered there to witness a very special astronomical event occurring that particular night. Of course they had come deeply into the desert to avoid any light distracting their view of the heavens and it was just a fluke that I had caught that one tiny flash. They were very gracious, explained the event in detail which I don’t recall much about, I was pooped, relieved and marvelling that we were found. I think the event had something to do with a comet and a meteor encountering each other. They even gave us an opportunity to look through the enormous telescopes they had set up. Very generously they did not comment or lecture us about our ignorance in getting ourselves lost this way. And, bless his kind heart, one of them who was extremely familiar with the desert figured out where we were likely camped, took pity on us, tore himself away from the heavenly marvel and drove us back. It turned out that we were more than ten miles away from our campsite and had been headed farther and farther away.

Sometimes I wonder in amazement at how we intersect in each others lives. Our bones could still be drying out in the Anza-Borrego desert sun, or we could have had a further adventure of spending the entire night in the desert and continued on the next day. Who knows to what end.

So, that was another version of being lost.  It was a memorable adventure and a multi-faceted learning experience.

Those who have travelled with me know that I am a heavy packer. This hike was one of the rare times that I chose to go light and look what happened! Now, even on Gabriola walks, I carry a flashlight.

I do not underestimate or take Mother Nature for granted. I live in faith to the best I know how, but don’t rely on trust.  I still love that desert and have returned there.

Back to being lost in the present. As I typed that previous sentence I caught myself — actually, when I am truly living in the present moment, I am not and cannot be lost. It is in anticipation of the future that I am lost. Yes, living with heightened uncertainty during this cancer journey is a memorable adventure and a multi-faceted learning curve. There is a special kind of excitement in being lost, it can certainly be enlivening! I am discovering more and more what it means to truly live in faith. Ben Wong defined faith as the “felt experience of the continuity of life” which resonates with me more than dictionary definitions. One of the things I value about Ben’s definition is that for me it is expansive, inclusive, not limited merely to the existence of the material body.

Related to my current sense of being lost within the cancer world, as soon as my chemo treatments ended the doctors recommended that I do a five-week, five days per week course of radiation. After gathering the information and listening as carefully as I could, I have made the decision to not subject my body, myself to radiation. That was about three weeks ago.  I have chosen to believe that balancing and strengthening my devastated immune system would serve me best. There remains a good deal of confusion about some very comprehensive blood test results that came in last week. The tests indicate that there is a high count of active tumour cells that I am told are of a nasty nature. They are of concern due to the type of cancer that I have potentially metastasizing quickly and aggressively. Therefore I am now researching and consulting about alternatives for a next phase of dealing with these cells. My intention is to build up my immune system and knock down the active cancer cells. Balancing.  There is a variety of treatment options and I’ve yet to determine which one to commit to. In the meantime I am active in a variety of ways and finding it a near full-time occupation.

Right now I am not afraid of being lost, most of the time I remain curious, accepting the value and the potential richness, however I do at times teeter on the edge of dropping into the pit of exhaustion, frustration, just wanting a clear, easy answer.

It is helpful to recall the Anza-Borrego adventure — making our way through the dark, step by step, and just as our light was about to be extinguished we followed a tiny spark and all was well.

With abundant loving and gratitude, Linda