The Flotilla of Doubt

This has been the oddest New Year for me. I have never in all my life been poised to embark on such a vast sea of uncertainty.

I have absolutely no idea where I will be when Dec 31, 2015 rolls around. Very ill? Very healthy? Somewhere in between? With a new liver? With my same, sick liver? Dead? These are all distinct possibilities.

I incorporated a New Years ritual suggested to me by one of my favorite fellow PSCers into one of my regular beachcombing excursions at the dawn of 2015. I wrote down all the things I was worried about on little pieces of paper (biodegradable paper, of course) and sorted them into two piles:  1) Things I Can Control, and 2) Things I Cannot Control.

The Thing I Can Control pile contained precisely three pieces of paper.

The Things I Cannot Control Pile was a mini Everest.

I filled my pockets with Things I Cannot Control and walked down to the beach. When I got to one of my favorite outcropping of rocks I read each one out loud, crumpled it up, and threw it in the emerald-green waves. Here is a random sample:

That they will find liver / bile duct cancer that would mean I am not eligible for transplant.

That some other health issue will crop up that will mean I am no longer eligible for transplant.

That I will fail the psychological component of the transplant testing and they will take my incapacity for denial and dark humour as signs that I am, in fact, clinically insane (and therefore, no longer eligible for transplant).

That I will die during the transplant surgery (my doctor took great pains to drive home the point that 10-12% of people do not make it through the actual surgery itself).

That if I survive the transplant surgery my body will try to reject the new liver.

And so on and so forth...

Soon, there was a flotilla of Thing I Cannot Control papers bobbing around in the water. I began to climb towards the next beach but, when I looked over my shoulder, I saw that instead of floating out to sea the Things I Cannot Control were hugging close to shore, following me like an attacking fleet from the Napoleonic wars. I grabbed a nearby piece of driftwood to splash them away.

"Go away!" I shouted. "Shoo!" Sweat broke out on my forehead. These Things I Cannot Control were stalking me. I wanted them GONE.

I scrambled across the rock, hopped down onto the next beach, and found a bigger piece of driftwood. I lay in wait for the flotilla to come around the curve of the rock.

I waited there, with my driftwood weapon poised for battle, for several minutes before I started to feel like a complete dork. The flotilla still did not round the corner of the rock as expected. Where had it gone?

I hopped up back on the rock where I had thrown the papers to get a better vantage point. My eyes scanned the green waves but the Flotilla had simply vanished.

Where had they gone? Had they sunk? Had they floated off in another direction? One thing was certain, they had disappeared.

And then, on the top of that rock at my favorite beach I experienced an overwhelming wave of peace. I was going to be okay. I didn't know how, or what path would take me to okay, but I knew I was going to be okay.

Now, while Dread and me are childhood friends, I have just met Faith in passing. I would describe her as a "recent acquaintance".

My knee jerk reaction was to doubt my moment of grace, to try to explain it, to shoo it away just like my paper flotilla of uncertainty. As much as the Things I Cannot Control were scary, daring to have faith in the unknown was weirdly even scarier.

I know, deep in my soul, that learning to have faith - even when all signs point to the contrary - is one of the lessons I am supposed to learn in this lifetime. To have faith when there is no proof to support it. To have faith that all is unfolding as it is should. To have faith that everything makes sense on some higher plane that my human brain is simply not equipped to comprehend.

Yet Faith still scares the bejesus out of me.

Still, I thanked the ocean for taking care of my Things I Cannot Control for me. I wouldn't say my Flotilla of Doubt had transformed into a Flotilla of Faith yet, but it was a start.

Us Broken Shells

 

I beachcomb several times a week on what my bevy calls "our" beach at the end of Oliver Street. It is part meditation, part therapy, and part religion. My main focus is beach glass but I pick up other pieces of intriguing flotsam and jetsam like bits of driftwood and shells.

Last week I was beachcombing with Clem. We climbed up a rock that the seagulls and crows had been using to crack shells to eat the yummy little sea creatures inside. I picked up a few and showed my handful of shells to Clem.

"Why do you only pick up the broken ones?" she asked me.

There were many intact shells scattered at our feet - ones that the birds hadn't managed to break. Clem was right though, I never pick up whole shells to take home.

"I don't know." I shrugged. "I just do."

A few days later as I arranged my new finds on half a whitewashed oyster shell, I found myself contemplating unbroken and broken shells.

Whole shells may be pristine but they have no secrets. One is more or less interchangeable with any other. The broken ones, however, are endlessly unique.

One that I picked up is broken on the top so that I can peer down its inside and see the spiral helix that disappears into the most extraordinary deep purple colour. Another, sheered in half, shows a perfect cross-section of the interior architecture of the shell and the variety of other-worldly hues contained inside.

If there is a word to describe how I have been feeling in the past few days it is Broken.

Broken by the weight of uncertainty of the next year. Will I be approved for a transplant? Will I find a donor? If so, how the hell am I going to move to Toronto for several months to make this happen?

Broken by the thought of my upcoming appointment with my PSC specialist and memories of how the last one left me so emotionally shattered that it took me over a month to pick up the pieces.

Broken by having to repeat my tumour-marker blood test in a few weeks.

Broken that I can't seem to conjur up the faith that seems to come to others so easily.

Broken by feeling myself get sicker and less able to cope with it all.

Broken by the chronic lack of organ donors and the knowledge that people like me die needlessly waiting in vain for one to come available.

Broken by the constant itching and nausea and feeling like I have the flu every day.

Broken at just wanting to set down this burden but knowing that I can't.

Since sharing my story in my keynote speech at SIWC and here on my blog I have had many people contact me and tell me about how they too are broken. Life can break us in a myriad of ways; the death of a loved one, a critical health challenge, parenting a challenging child, a painful separation, mental illness, heartache, loneliness...I am beginning to think that getting broken is an unavoidable part of the human journey.

Even though I have been struggling too much with my own broken state to get back to even half of the incredible people who have shared their stories with me (mea culpa), I am moved by each and every one.

I wish they could see how beautiful I find them. They open up and show me their strength and faith and tenacity and hope and empathy and generosity and grace. They are like my broken shells, sublime in their broken-ness, with a lustre that would be invisible if they had remained intact.

It is often difficult to see the beauty in our own broken state, or to realize that the majority of people around us are also broken or have been broken in the past. I too am seduced by the images of perfection we are constantly served up by magazines (I mean you, Real Simple) and carefully curated websites and public profiles. I find myself thinking, my life should be like that.

Ultimately though, accepting our broken-ness and sharing it is far more compelling than a flawless exterior.

I was stuck on how to end this blog post until yesterday, when I received a message from a high school friend that I haven't seen in over twenty years:

"I wanted you to know that you have inspired me to do something that is out of my comfort zone. I am donating a kidney on Thursday to a father in Max's class. Keep promoting organ donation because your words are working miracles."

Celebrating our broken-ness leads to interconnectedness, and interconnectedness leads to miracles. So if you too are a broken shell, know that you are beautiful and brave. Also, know that your glow reaches farther than you could ever realize.