Badass Surrender

Last Monday I was sitting in a doctor's office at the Liver Transplant Clinic in Toronto, listening to the hepatologist tell me that although a transplant would probably be in my future and was still the best case scenario for me, I was still "far too healthy for a transplant yet."

My first instinct was to argue my case.

I had ample ammunition to do so. My recent MRI showed that my PSC is progressing fast and that my bile ducts are sick, sick, sick. I have cirrhosis. I have a fibroscan score of 22 which means my liver has the pliability of a crusty, deflated football. I have to take antibiotics every day to ensure that the cholangitis infection that has now taken permanent residence in my bile ducts is kept  at bay, and a different type of antibiotic to control the suicidal itching. Most of all, my PSC guru in Calgary told me in his peppy Australian accent when I saw him at the end of November, "Well Laura! I think it's time to get you a new livah!".

Since my PSC diagnosis in 2012 I have had to fight, fight, and then fight some more to access the best care. PSC, like other "orphan" diseases, is so stupidly rare that most doctors I come across in Victoria have only experienced a couple of other PSCers at best.

Funnily enough, the third book in my "Grape" series which I am writing right now (entitled MY GRAPE YEAR) is about breaking rules. The thematic resonance with my present battles are unmistakable.

Contrary to what many people seem to believe, I did not get to Toronto by luck or by the benevolence of a medical fairy godmother / concierge service.  Rather, I accessed Toronto by offending doctors, becoming that pain-in-the-ass patient that makes medical assistants and nurses roll their eyes, refusing to take no for an answer, and nagging, pushing, and trodding (repeatedly) on the toes of the medical establishment. When the full extent of the parlous state of hepatology in British Columbia finally sunk in about six months after I was diagnosed, I made a conscious decision to discard my upbringing of being polite and not offending anyone. My survival trumped the need to be "nice" by a long shot.

I became a put-yer-dukes-up PSC badass. I did my research as though my life depended on it, and it actually (scarily) did on several occasions. I learned that Toronto was a world leader in living donor liver transplants, that they did the biggest volume of this very specialized type of surgery in North America, and depending on who I consulted, perhaps the world. I discovered that in over 700 surgeries they had never lost a donor and that doctors from all over the world flew in to learn how to duplicate the success of their program. Unfortunately nobody has a crystal ball to see into the future, but I felt with Toronto I was getting my best chance of getting through to the other side of this whole PSC thing.

Yet, after all that, at my first doctor's appointment in Toronto here was the hepatologist telling me that maybe it wasn't time for a transplant after all? Whiskey Tango Foxtrot?!?!?

My first instinct was to do what I had been doing for the past twenty-four months, to fight back. Yet about half way through that appointment, when the hepatologist was explaining the risks associated with transplant which, make no mistake about it, are substantial, it dawned on me that his arguments against transplant right now were not without merit.

Throughout that intense week I lost count of the doctors and specialists I consulted (not to mention the vials of blood drawn from my veins). The Toronto specialists were, without fail, kind and incredibly competent. Some felt I was ready for transplant right now whereas others thought it could maybe wait a while longer.

The upshot was that all the people I saw were going to meet with all my test results and make a collective decision about my case. My knee jerk reaction was to feel frustrated and impatient with this difference of opinion.

Then, I thought about it some more.

Having my case debated by so many experienced doctors in one room was exactly what I had been fighting for. They were all world leaders, their collective knowledge and expertise was mind-blowing. They were going to try to make the best decision for me and the fact that there was a difference in opinion meant that my case would be looked at in detail.

Surrender seemed like the most unnatural thing for me to do, but as it turned out surrender was the most badass choice I could make right then.

You do everything you can humanly do and then you have to do the hardest thing of all - relinquish control to the experts you have gathered in your corner and, even more importantly, to what I have come to think of as "The Great Mysterious."

So this week here I am, back in Victoria (where it is not -19 C, hooray!), practicing badass surrender to the best of my ability. While I wait for the decision to be made in Toronto I am feeling a very curious and unfamiliar feeling of peace. I have no idea how long this astonishing (for me) state of zenitude is going to last, but it has made me realize that I must become better acquainted with this whole badass surrender thing. It may just have the potential to be one of the most powerful weapons in my repertoire.

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.