Faith and Paris

I've been struggling a lot with the notion of faith (again) this month.

The attacks in Paris happened right in the middle of a two-week long treatment for me at the local hospital. This involved going every morning to get pumped full of IV antibiotics to try to beat back the infection that has taken up permanent residence in my sick liver and bile ducts.

Every time my liver infection rears its head the physical effects are wretched, but worse still is the mental anguish of not knowing what is going on inside my body and what will happen next. Crippling uncertainty and fear become my constant companions.

Having faith that everything will be OK is one of the hardest things in the world for me, as it turns out. How do I put my faith in a power (call it God, Buddha, Allah, Fate, or the Great Manitou) that has let many of my friends with PSC die despite the fact they had unrelentingly positive outlooks and everything that I don't seem capable of maintaining throughout this journey?

In the midst of my struggles with that conundrum, the attacks in Paris happened. As the news began filtering in I spent several hours feverishly checking in with friends and family to make sure they were safe. I discovered with horror all these innocent people who had thought they were going out to a concert, or for a drink with friends, or for a casual meal, only to be gunned down or blown up in the most cowardly and brutal manner.

How was I supposed to have faith that I would be taken care of by the same power that neglected to protect the victims in Paris and of other attacks over the globe?

Paris has felt like my backyard for all of my adult life. It is a place where I feel safe and nurtured. At the end of August, Franck, myself, and the Bevy were careening around the city in the wee hours of a sultry summer night with our friend Joelle, leaping out of the car to enjoy ice cream cones and an impromptu musical performance by some street musicians on a bridge over the Seine. It was one of those glorious moments when my whole soul throbbed with the joy of being alive. I seem to experience such joie de vivre frequently in Paris.

The day after the Paris attacks Camille said to me, "Mom, is Paris going to be changed forever now? Will it never be the same?"

"No way," I said. "Paris has been through much worse. Paris is resilient. Paris will always be Paris."

I realized after I answered that I had complete faith that this was true.

The day after the attacks my friend Joelle posted on Facebook that she had gone out to a bistro and sat on the terrace for not one, but two drinks. Thousands of other Parisians did the same in the impromptu #jesuisenterrasse movement.

Parisians did not cower in their apartments. They went out and fought terror with joy and wine and fresh croissants.

The Parisian approach gave me a new insight into my struggles. Often, since I got sick, I feel as though the disease is not only destroying my body, but that it is dismantling bit by bit all the things that make me...me.

But now I will remind myself to be like Paris. When things get scary and sad I will fight back by moving ferociously towards LIFE. For me, this means spending time with my family and friends, writing, reading, eating delicious food, beachcombing, creating new things...all the things that remind me that, despite my PSC, there are still so many pleasures to be savoured - so many petits bonheurs du jour as Franck's Aunt Renee always says.

If I could get on a plane right now to join the Paris #jesuisenterrasse movement in person, I would. However, budget and liver are not cooperating so I thought I'd do the next best thing - I could help others travel to France via my Grape Books. Reading is one of my favourite (not to mention most budget-friendly) methods of travel, after all.

I have never discounted my books before because I know better than anyone the work, sweat, and effort that go into creating them for my readers. I don't believe that creatives should get in the habit of undervaluing their efforts. For Paris, though, I have made an exception.

I chose to discount My Grape Year because it recounts how I fell in love with not only France, but Paris. I want everyone to be able to remind themselves of how the French have made an art of enjoying life's small, countless pleasures (which is why, I believe so many of us feel that France is one of our spiritual homes).

So from November 23-30th the Kindle version of My Grape Year will be available on Amazon.com for $0.99 cents instead of the usual $3.99.

Choosing life, again and again and again, is a defiant type of faith. It has allowed Paris to weather hardships over the centuries that would have toppled lesser cities.

In good times and in bad times we should all strive to be like Paris. When things get tough, we can find ourselves again by going #enterrasse.

The Best of The Worst of Me

It's been a rough few weeks. After getting out of the hospital in March and finishing ten days of IV antibiotics for my liver infection I enjoyed five weeks of feeling like A Million Bucks. Well, not other people's version of a million bucks, but a significant improvement on the Varying Shades of Shite that had become my norm. Dammit, I'd take it!

I finished editing My Grape Year, arranged the photo shoot in France for its cover, planned a Creativity workshop for the end of May I am super stoked about, even wondered if I may be able to make it back to Burgundy in July. Then, about six weeks after my IV treatment, I started to slide slowly but inexorably downhill. Nausea, increased pain and discomfort in my liver area, fatigue, weakness, and random fevers. It basically feels like a combo of the stomach flu and the actual flu that waxes and wanes throughout my waking hours. There are no longer good days and bad days, but rather good hours and bad hours, or often, good minutes and bad minutes.

The whites of my eyes are no longer white but rather pale yellow and I'm sure the results of my last batch of bloodwork are going to be pretty horrific. I'm still waiting on the doctors to get back to me with A Plan but I know that sooner or later I am heading towards another all expenses paid stay at Club Med. On top of all that, I'm also nearing my yearly colonoscopy / gastroscopy and my 6 month MRI - always stressful as they look for all variety of nastiness that could disqualify me from a potential liver transplant.

So...yeah. Basically a shit sandwich.

I wake up every morning with a lead weight not only in my liver, but in my soul. A lot of that is physical pain and discomfort, but even worse, I think, is the mental anguish, particularly the intense, crushing anxiety.

I have been thinking a lot about my lifelong struggles with anxiety and the lifelong struggles that so many of my fellow writers have with anxiety. Just for the record, not all writers are headcases - a minority are remarkably sane - but frankly, most of my favorite ones have a bit of the headcase in them.

I see some people deal with serious illness and am amazed at how they just power through and DO.NOT.WORRY.. They do not try to project the future, they do not second guess, they do not doubt...they just decide on an outcome and never mentally sway from that path. How I wish I could be like that.

Instead, I was born with the "what if?" gene. What if they run out of antibiotics that work on my liver infection? What if they find cancer? What if one of my varices ruptures? What if I am approved for transplant but my potential donors can't get vacation time off to be assessed? What if I get a fever when I am supposed to be getting the colonoscopy? What if I die? What if I live? What if, what if, what if, what if, WHAT IF?

Not only is my brain obsessively asking 'what if' all the time like a needle on a skipping record, but it also concocts and projects fully fleshed-out scenes of the various 'what if' scenarios - good and bad. Me being told by the doctor that my PSC has morphed into cancer, me waking up from transplant feeling like I've been reborn, me being counselled by the hospice people as I prepare to die, me on the stage at a TED talk after a successful transplant talking about how creativity saved me...it's all there in turns - the terrifying and the galvanizing, the wretched and the glorious.

Lately, I long to muzzle this overactive 'what if' drive on my brain, but no amount of meditation, gratitude journaling, sessions with spiritual healers, or reflexology seems to be doing the trick. The truth is nothing in my life (and I have tried pretty much everything) has ever changed that aspect of my mind. The 'what if' is as much an innate part of me as my brown hair or my love of the ocean or my fear of knives.

But that 'what if' has a flip side. Without the 'what if' I wouldn't remember my past in terms of scenes and stories and be able to write about it vividly in my memoirs. Without the 'what if' I wouldn't be able to concoct a paranormal romance between a winemaker and a mermaid, as I am doing right now for my first work of fiction. Without the 'what if' no writer would be able to write but because of the 'what if' so many of us writers live with anxiety.

My 'what if' gene is the perfect example of a human paradox; the worst part of me is also the best part of me.

Without 'what if' I would not be waking up every morning with that lead weight of anxiety in my soul, but without my 'what if' I would not have writing in my life as one of my strongest lifelines in these stormy seas.

My reflexologist gave me an interesting idea last week. She said, "how about you try writing down little scenes of your life after a successful transplant?"

I have done that in a little (turquoise) journal - a little snippet per day. I'm surprised at how it is the little things that capture my imagination - not the TED talks as much as being able to volunteer to take Clem's class to the beach, without worrying I may have to bail due to a fever or nausea or a hospitalization, gardening with Franck without needing to rest on the couch, not having to tell my girls I need to head to the hospital again...a normal life - god how I will treasure it if I am lucky enough to get it back.

I am tired of fighting against my essential self. My anxiety, for better or for worse, will probably always be a part of who I am. I am going to invite my 'what-ifitis' on this journey with me, instead of making it stow away in the life-raft. I'll let you know how it goes.

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.