Creativity Therapy

photo 3.JPG One of the main reasons I began writing my Grape books was because there were stories I wanted my daughters to know and I didn't know if I would be around to tell them.

Many of you know how the morning after I was diagnosed with PSC I began writing My Grape Escape and didn't finish until I self-published it about nine months later. A simple Google search (FYI: NEVER a good idea with health stuff) will tell you that PSC kills off its victims in a myriad of inventive and heartless ways. Early on, a specialist in Vancouver said to me, "You have to accept that you have a life-threatening disease. You could die of sepsis tomorrow, or be diagnosed with liver or bile duct cancer next week. That is your reality now."

Blunt, to be sure, yet effective.

No doctor, however, could ever tell me exactly how one goes about "accepting" such a reality. Probably because such an existential question of reconciling life and death strikes at the heart of the mystery of our human journey - a mystery that people have been grappling with ever since they made handprints of their own hands on the wall of a cave in Chauvet, France 32,000 years ago.

I wrote feverishly, telling the stories of how I decided to leave behind an Oxford degree and prestigious career legal career path to throw myself into the unknown, how I struggled with panic attacks and anxiety, how it slowly dawned on me that life didn't need to be perfect to be wonderful, how it was wiser to collect les petits bonheurs than to harbour unrealistic expectations of life, how sometimes it was impossible to make yourself happy and to make others happy too...

These were things my three girls needed to know. I had no desire for them to read my books immediately - once they were published my stories would be there when they needed them. That is the magic of art, and writing, and books. They give us a sliver of immortality in a finite world.

However, an unexpected thing happened on the path of telling my stories. It was only when I was about half way through my latest book, My Grape Year, that I realized how creating - in my case writing - was the best course of therapy I had ever embarked upon.

Immediately after I was diagnosed with PSC I called in the cavalry. I set up appointments with acupuncturists, spiritual healers, RMTs, therapists, as well as bought a juicer and eliminated sugar, grains, dairy products, and caffeine from my diet. My whole life became about curing myself from this bizarre, rare, and unpredictable disease.

It didn't work. Not only did eliminating every pleasurable form of sustenance and living off juiced kale started to make death seem like a not entirely unappealing option, but my days were so full of appointments that my battle to stay alive left me no time to actually live.

I am generally a big fan of therapy, but in this case once we had talked for a few sessions about my health situation, the therapist (and there were a few) and me would inevitably end up staring at each other with nothing more to say. The whole PSC situation was certainly not the worst thing in the world, but sucketh, it did. It was one of those types of burdens that cannot be eliminated. It had to be carried, and nobody could tell me how. I had to figure it out for myself.

So blindly, compulsively, I kept writing. I wrote my Grape books out of order. At first this made no sense to me, but one day it finally dawned on me that, on the contrary, it made perfect sense.

My Grape Escape is all about faith, huge life changes, and trying to build a whole-hearted, authentic life even when things are far from perfect. I wrote it during that first year post diagnosis when my life had been turned on its head and I needed to find a new way of living with and in the face of my PSC.

My Grape Village is about the challenges of adapting to a new life with a family - finding community, balancing your needs with those of the people you love the most, finding happiness via les petit bonheur du jour despite the challenges life throws at one's head, and the humbling realization that life never stops providing us lessons, especially at those very moments when we believe we know it all.

My Grape Year was written at a time when my PSC had started to become extremely symptomatic, forcing me to embark on uncharted territory. I was terrified and needed to find courage. I found it in my bold 17 year old self - that girl with her head full of romance and dreams who left Canada and flew almost half way around the world to seek out love and a different way of living. I cannot tell you how many times I woke up during my writing of My Grape Year, either in the hospital or home, paralyzed by visceral terror. My body was slowly, irrevocably getting sicker, I was learning how the transplant system in Canada was both political and ineffective, especially for us PSCers, and my disease was stripping away every part of me that made me me. It was only going back to the manuscript of My Grape Year that made me remember that I was strong and that I was bold and that I had done scary things before and that doing those scary things had transformed my life.

I wept over my keyboard countless times. I laughed over it too. Initially when people asked me why I was writing my Grape Books out of order I would just laugh and say that my mind wasn't linear. This is completely true, but now I look back on the order and it makes perfect sense. The story I wrote always dealt with issues that I needed to work through the most at that time.

Right now I am finishing up edits on My Grape Wedding and I am realizing that this books deals with a time of crisis in my life too, when my panic attacks were probably at their debilitating. Paradoxically, it also deals with one of the most joyful times in my life - the summer when Franck and I got married in Burgundy, France. This rite of passage not only marked a new beginning, but a time when I was surrounded and lifted up by the love and support of friends and family from all over the world.

Could it be a metaphor for my approaching transplant? I certainly hope so.







Faith and Paris

P1130308 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.


No Pearls Without Grit

Perle 08 There is a book I believe every human being should be gifted on the day of their birth. It is Viktor Frankl's "Man's Search for Meaning."

One of my favourite quotes from the extraordinary story of how Viktor Frankl kept his spirit intact in the unfathomable horror of a Nazi concentration camp has been a beacon for me during these past three years of living with my PSC diagnosis:

"Everything can be taken from a man or woman but one thing: the last of human freedoms to choose one's attitude in any given set of circumstances, to choose one's own way." 

If you have read any of my past blog posts you will know that throughout these past three years I have been terrified, bitter, furious, jealous, and confused in turn as I try to co-exist with my PSC. I have also been grateful, humbled, touched, and inspired. Such is the paradox of living with a rare disease, or in fact living with any of the myriad of challenges life constantly lobs at our heads.

Do you know what a pearl begins with? A pearl begins with a humble piece of grit - an annoying irritant that the oyster coats with layer upon lustrous layer of nacre in an effort to protect itself from the unwanted invader.

PSC is the grit that invaded my life completely out of the blue three years ago. What I choose to do with it - the meaning I create from my adversity - are my pearls.

I cannot help but bring my all-too-real human emotions and reactions to my PSC experience (and, no, I'm not going to call it a 'journey' or a 'gift' because everyone who has an illness gets to the point where they want to sucker-punch the next person who utters those platitudes).

People say I am brave, but I'm so not. I wake up pretty much every morning terrified that PSC will rob me of the privilege of seeing my daughters grow up, meeting my grandchildren, traveling the world, and writing all those words I have in my head and my heart. There are so many things about my PSC that I cannot control. Instead of accepting this with wisdom and serenity you will usually find me off in a corner somewhere freaking the eff out.

However, I realized that I can still have all these unpleasant, disorienting emotions roaring through me (and mine roar LOUD) and still make a choice about my attitude. I have failed utterly at making myself more zen and accepting, but I can still choose to use my PSC as a catalyst for positive change.

Some days this is as simple as making time to have a good chat with one of my daughters or just giving them an extra long hug. One day I lent a fellow parent change for a parking meter at the field hockey pitch where my youngest was playing. He tried to pay me back at the end of the practice and I was like, "Are you kidding? Pay it forward." It is all about being more generous, being kinder, and being more compassionate to the people around us.

PSC was also the catalyst for finally committing myself to writing - one of my true, life-long passions. I began writing the morning after my PSC diagnosis and didn't stop until I published my first book ten months later. Last year I finished my second book and I plan to publish my third next month. I have taught writing, creativity, and self-publishing workshops and connected with an incredible community of fellow writers and creatives. It is hard work, but I love every minute.

My priorities became extremely simple as soon as I found out I had PSC - my three daughters, my husband, my family and friends, and my passions. Doctors made it clear to me, often in a brutally blunt manner (as it happens, I have Much To Say about certain members of the medical community needing to take humanity lessons but that is another blog post for another day...) that my PSC could kill me. There is also the possibility that I could get a transplant and do well. The huge gray swath of uncertainty between these two eventualities is where I have been residing for the past three years. This is a place where there is no time for pretending to be anything but my true, authentic self.

All these things are pearls that would never have formed without PSC being the grit at the core of it all.

From the beginning I have been public about my PSC diagnosis and as a result my eyes were opened to the fact that most people around me were also struggling with adversity - sometimes illness (mental or physical), sometimes grief, sometimes abuse, sometimes life that just hasn't turned out the way they envisioned.

Adversity, I realized, isn't something that should (or can) be avoided in life. Adversity IS life.

It is what we do with our adversity that defines who we are and how we live. We can be scared, terrified even, yet still choose to create positive change. The fear doesn't go away, but it also becomes fuel for making good stuff happen. Instead of wasting energy trying to eliminate adversity (impossible - you can trust me on this - I have spent my whole life trying) concentrate instead on actions which allow you to transcend it.

I have always wanted to write, so I began to write and, more importantly, finish and share what I started. I also wanted to raise money for PSC research which as anyone in the PSC community knows is desperately needed. Before I even published my first book I decided that I would donate 10% of the after-tax royalties of everything I wrote to the wonderful PSC Partners organization for PSC research. Yesterday I sent in a donation of $2000 - not my first royalty donation and certainly not my last. If I can play even an infinitesimal part in finding future PSC treatments and maybe one day a cure then voila! Another positive change. Another pearl.

When PSC Partners introduced their patient registry last year I immediately understood what a crucial tool this was to speed up the research for PSC. I began to advocate (some would say 'nag relentlessly') on the PSC Partners forums for everyone with PSC, or every caregiver for a person with PSC, alive or deceased, to take the 15 minutes it takes to sign up. The registry has an amazing potential to accelerate and expand research currently being done for PSC. I believe in the registry with all my heart and see this as one of my main missions.

I also advocate for organ donation wherever and whenever I can. I harass people to sign up to be organ donors, to consider live donation, and lastly, for governments to consider adopting policies such as presumed consent and hospital-based organ donation teams that have proved so effective in countries like Spain and the Scandinavian countries that organ waiting lists have become practically obsolete.

A high school friend who lives in the States messaged me out of the blue to say that she donated a kidney to a fellow parent at her children's school in part because of my social media postings. To think that because of something I posted or wrote that a father is now living free of dialysis and can look forward to a healthy, active future with his children...a gigantic pearl.

We can't choose to live without adversity but we can choose to use our battles as ignitors and accelerators for making the world a better place for everyone.

Without grit, there are no pearls.