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.

I'll Take A Personality Transplant, Please...

Every morning since being diagnosed with PSC two and a half years ago I wake up thinking, "I totally cannot handle this. Life gave this disease to the wrong person."

I often joke that what I need even more than a liver transplant is a personality transplant. Like most jokes it contains an uncomfortable dose of The Truth.

It's not that I would wish this shitty auto-immune disease on anybody else, or because I harbour some sense of superiority that makes me think I deserve better. It's not even because of the exquisite irony that I manage four vacation rentals in the french vineyards and am the wife of a Burgundian and can no longer touch a drop of wine (but somebody up there certainly does have a twisted sense of humour). Rather, I yearn for a personality transplant because most of the time - especially on days like today when I have medical stuff looming on the horizon and am frankly not in a felicitous mental state - I feel woefully ill-equipped to deal with this disease.

Through the PSC community I have come into contact with people who possess a deep, unshakeable faith that they will be fine in the end. I'm always amazed by this. Have they always had this certainty? Where on earth does it come from? More importantly, I'd like to order some of that please.

I've also come into contact with people who are brave...like, superhero brave. They endure painful treatments and what would for me be torturous uncertainty with a kind of nonchalance that an olympic skier would feel going down the bunny hill. They say they never feel scared and, stranger still, I suspect they are actually telling the truth. I'd like a piece of that too.

There are also the people who just "carry-on" in the best of the British tradition and decide that they are not even going to really consider themselves as being sick at all, even when diagnosed with things like liver cancer. They just think "Crikey. That's a spot of bother." Wow. Yes, I'll also take one of those. 

Then there are those lucky, lucky souls who seem to have been born without the worrier gene. When I ask if they worry about cancer, post-transplant rejection, etc. they answer, in all honesty "no". When I ask how...why...how the hell they DO that, they say, "I decided there was no point to worrying, so I just don't." What!? You can actually turn off that switch in your head!?

So there's the zen buddhas, the biblical matyrs, the superheros, and then...there's me.

I am such a hypochondriac that Franck actually had to ban me from watching medical dramas like ER, House, and even Gray's Anatomy a decade ago. My suggestible imagination meant that any illness I saw on-screen would manifest itself immediately in my body as symptoms, which usually culminated in a deeply humiliating ER visit within a few hours. When I was diagnosed with PSC one of my first reactions was "Goddamit! I forgot to imagine that disease. That's why I got it!" Clearly, I also have a bit of magic-thinking craziness going on in this head of mine.

I worry and I ruminate. My mind gets stuck in painful thought patterns. I am vigilant about each symptom and fret about new ones. I wish beyond anything that I could just turn off that worry switch, but I have tried and tried and tried but mine appears to be welded in the "ON" position.

I get scared. Like really, really curled-up-on-the-bed-in-a-foetal-positon scared. When I'm like this, my mind projects terrifying films for my own personal viewing pleasure on a continuous loop.

I don't speak the language of denial. I can't pretend that I am not going through this. If I could, I would, but my powers of denial are puny.

There are so many people so much better equipped to deal with PSC than me - pretty much everybody, actually.

However, I have discovered a few arrows that I use again and again to help me fight the mental and physical impact of PSC.

One is my dark sense of humour that I share with Franck. There isn't much we can't joke about, especially if it is in bad taste. When the grim things get too threatening, we deflate them with our laughter.

Another is my need to create - write, paint, glue beach glass on wreathes...whatever takes me out of my own head for long enough to be able to take a breath again and re-engages me in life.

My defiance is one of my strongest arrows. I fall, often and badly, but there is something in me (what I call "my little spark of fuck you") that forces me to pick myself up again.

Another arrow that I have found shoots straight and true is my need to connect with others, to listen to their stories and journeys and to share mine in all its rawness. This creates a net of support that makes me feel supported and I hope makes others feel supported as well.

It's the same with parenting - I am good about reading with my kids, but lamentable at keeping track of the various lunch forms, soccer try-outs, and teacher's gifts that come with their busy lives. I love doing crafts with them but am doing a far from stellar job of protecting them from swear words and age inappropriate movies.

With my writing, I appear allergic to plotting and formatting, but I have always had an ear for dialogue and an instinct for how to end a chapter.

I guess the hard lesson I'm learning is that going through life most of us feel ill-equipped. Bemoaning our shortcomings is a waste of time better spent on cultivating our strengths, even if they seem like meagre offerings.

This is far less messy than a personality transplant. Besides, if we had a different set of arrows in our quivers, we wouldn't be ourselves anymore. That, I know, would be a terrible shame.