Student of Life

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.

 

 

 

 

 

 

5 Tips to Squeeze Writing in over the Holidays

IMG_3866 For most of us, December gives a whole new meaning to the expression "time crunch". Sugar cookies to decorate, kids' performances to attend, trees to decorate, menorahs to light, presents to wrap, eggnog to drink...

Yet I have a manuscript (My Grape Wedding) I want to finish rewriting by mid-January and another (my paranormal romance) than I need to completely revamp...how by all that is Holy do I get that done at this time of year?

Here are my top five tricks:

  1. Cozy it Up - Make writing a holiday tradition in and of itself. Set the stage. Turn on the fireplace. Flick on the fairy lights. Pour yourself a mug of something warm and delicious, choose a festive playlist on Songza, then hunker down with your manuscript. You will feel cozy and accomplished all at once!
  2. Barter for Time - i.e. I will wrap these presents if you take the kids figure skating. Everyone has a ton to do this month, so figure out the things that you don't mind doing and do those in exchange for blocks of uninterrupted writing time.
  3. Ease Up on Yourself - This is the one I always struggle with the most. Let's face it - December is probably not the month of the year when you are going to accomplish the most writing-wise. Take five minutes and consciously rewrite your writing goals and benchmarks to make them less ambitious.
  4. Treat Any Writing As a Win - I truly believe that ANY writing you get accomplished in December deserves a round of applause, so don't wait for anyone else - give this round of applause to yourself every time you, say, chalk up 100 new words or rewrite a page. Big projects are accomplished by hundreds of tiny steps and the important thing is that you are doing SOME writing and keeping your momentum going. Reward yourself with a candy cane.
  5. Enjoy The Holidays - Sometimes us writers (*ahem* me) get so wrapped up in our parallel imaginary worlds and writing goals that we forget the thing that actually fuels our writing - LIFE. Without taking time away from our manuscripts to actually enjoy our lives and time with our loved ones, our gas tanks are going to run dry pretty darn quick. Time away from our writing can benefit our writing. This means, my fellow writers, that we need to go out and get our Fa La La La La on!

On Panic Attacks and Creativity...

panic-400x266 I had a humdinger of a panic attack last Wednesday. Many readers ask me after reading My Grape Escape and My Grape Village whether I still get them. Short and honest answer - yes, as last Wednesday proves, I certainly do.

I no longer waste precious time and energy trying to eliminate panic attacks from my life. I have been having them, after all, at random intervals since my mid-teens. They come. They go. They are always epically unpleasant and unwelcome.

I no longer believe they happen for a reason. I have come to the conclusion that searching for triggers or reasons for my panic attacks is a colossal waste of time.

On Wednesday, I was just sitting on the couch talking to a friend on the phone when my heart started beating faster than usual. The anxious part of my brain seized on this and started going, "Why is your heart beating faster? Something must be wrong! Redalertredalertredalert!!!"

Within three minutes my hands were shaking and my mind was spinning in that hellish anxiety vortex, making note of every uncomfortable physical sensation, amplifying it by approximately a million, and creating a logical case for my imminent demise (or worse yet, being trapped in a situation I can't control aka Just Kill Me Now).

Even though I consider myself a writer, I find myself at a loss for words when I try to describe the intensity and sheer terror of a panic attack to anyone who has not experienced one before. Conversely, when I talk about panic attacks with people who have experienced them, words are not necessary. I can just tell by looking in their eyes that they get it.

Even though I hate them I have come to a place of acceptance that they stem from a glitch in the way my brain is wired. I think we ALL have glitches in how our brain is wired. Some people have the depression glitch, some people have the jealousy glitch, some people have the fear-of-intimacy glitch...as for my brain, I suspect my panic attack glitch is the same or closely related to the part of my brain that allows me to imagine and write.

I am no longer ashamed of my anxiety. Indeed I think the stigma around mental health is one of the most corrosive forces in existence. However, I certainly don't want to feed my anxiety by treating it like the most exotic, fascinating animal in my own personal zoo either. I think my creativity, love for Star Wars, and humour are all vastly more interesting than my anxiety. Still, panic attacks are part of my emotional hard-wiring and chances are I will most likely have to co-exist with them for the rest of my life.

Something interesting, though, has been happening in the midst of my panic attacks since I began taking my writing and creativity seriously. In the middle of my Wednesday anxiety roller coaster ride, in the midst of my shaking hands and my pounding heart and my spinning head full of thoughts of certain and imminent doom, another little voice popped up. I like to think of this particular voice as the voice of my creative self.

"Remember Tillly?" it whispered to me (Tilly is the protagonist in my paranormal romance - she doesn't suffer from anxiety disorder but she does experience plenty of well-warranted fear). "You have to remember how you are feeling right now. How exactly is your heart pounding? What muscles are contracting in your chest so it feels like you cannot take a full breath? What is making you so viscerally uncomfortable right now? You have to make note and remember so that you can depict Tilly's fear more effectively."

One of the things that I am trying to learn through my mediation practice is to create some distance between myself and my thoughts and physical sensations that are always, even though they never feel like it at the time, transitory. Meditation encourages us to be curious about our thoughts and feelings without judging them.

Creativity does the same thing. By looking at my panic attack-y feelings and thoughts as a potential writer hoping to harvest them for future use, I create some much-needed space between myself and the deeply uncomfortable sensations my crocodile brain is creating for me.

The sensations are still wretched, but having curiosity about them brings a glimmer of transcendence. And then, when I actually use the material, which I always do sooner or later, the circle is complete. I have used my own misery to do a better job of writing and to hopefully make others who have felt profound visceral fear (and who hasn't?) feel less alone.

In other words, for people who have managed to carve out a creative outlet for themselves, even the really, really bad stuff is useful. Through our creativity we make even the unwanted and the uninvited serve a purpose. As I have said before, IT'S ALL MATERIAL.

I am not a subscriber to the belief that bad things happen for a reason, but I DO believe that we can choose to give even the yuckiest things meaning. This ability, in fact, is one of the things that makes us uniquely human.

Creativity won't make my panic attacks disappear for good (godammit), but it does make them slightly easier to cope with, and remains one of the most best ways for me to render useful something that is inherently useless.

What's With the STAR WARS Nerdgasm?

5a17973344c712c00f1296a4cb3288ef Many of my friends, even those close to me, confess from time to time that they find it odd I get so geeky about Star Wars.

I never fail to be surprised by this question because: a) duh. It's STAR WARS people! and, b) do I come across as some sort of high brow intellectual or something?

The latter concept makes chuckle because, to me anyway, it has always been clear that I am a nerd at heart. I get unaccountably excited by odd, random things, I spend so much time in my own head that I usually walk around with my hair looking demented and stains on my clothes, and there is nothing that bores me more than being stranded in the middle of some intellectual circle-jerk discussion about cutting edge literary fiction or cryptic films.

Anyway, suffice to say my love for Star Wars goes very, very deep. My first encounter with Han, Leia, and Luke was one of the most profound spiritual awakenings of my life.

It was 1977. I was five years old. My Dad, who was never one for going to the movies, decreed that he was going to take my older sister Suzanne and me to see this new film that everyone was raving about. It was called "Star Something".

I was immediately suspicious. "Is it a cartoon?" I demanded.

"No. It's a real grown-up movie," he said, as if this was a good thing.

No thanks. Anything that wasn't a cartoon held zero interest for me. Grown-ups found boring things riveting, such as conversations about mortgages and the optimal shade for shag carpeting.

How exactly my father managed to drag me to the Odeon movie theatre in downtown Victoria is now lost in the mists of time, but I do remember feeling severely put-upon as I flipped down my movie seat. My Dad reached in his coat pockets and pulled out three full size Mars bars, one for each of us.

"Isn't it funny?" he said. "We're going to watch a movie about space and and we're eating MARS bars!"

I knew the chocolate bars were a peace offering, but I was still dreading the movie. Also, it was about space. I hated watching the documentaries about space on PBS with my parents that never failed to leave me fretful about a meteor falling out of the sky and squashing me. I began chomping resentfully on my galactic sized Mars bar.

The lights went dim and the screen filled with a weird sort of writing that slid backwards instead of side to side the way writing was supposed to. Besides, I couldn't read yet. What if the whole movie was just words on a screen? That would be the kind of useless thing that grown-ups would enjoy, I reckoned.

Then the writing disappeared and the screen filled with a battle on a star ship, and R2-D2, and C3-PO, and Princess Leia. Hey...was that beautiful lady really talking back to those evil grandpas dressed in black? Was that a lazer gun she was shooting?

And I was gone.

Me as I knew myself up until that point vanished like the planet of Alderaan. I wasn't just watching this movie, I was living it. I remained plastered against the back of my seat with the centrifugal force of the story, the half-eaten Mars bar dropped, forgotten, on my lap.

Good vs. Evil. A trio of heroes who were funny, brave, and eventually, friends. Darth Vader who made me want to pee my pants every time he breathed...

I had not know this was possible. I had not known that through a story I could actually live a different life for a while - a life that was more vivid and more real than my own. By the time the Millennium Falcon swopped in with Han at the helm to shoot away Darth Vadar so Luke could take his bull's eye aim at the Death Star exhaust vent I thought my heart was going to explode.

What was this magic that could transport me to another time and place more effectively than a time machine and a tele-transporter all wrapped up into one?

When the medal award ceremony was over and the movie's credits rolled I stayed glued to my chair, as did Suzanne and my Dad.

Finally the lights came back on. My Dad turned to me. "So? What did you think?"

I shook my head, mute. No words. There were no words.

He looked down at my lap. "You didn't finish your Mars bar."

I hadn't. I actually threw it in the garbage can on our way out of the theatre as I was still too deep in my walking Star Wars daydream to consider doing anything as pedestrian as eating.

Up until then I hadn't known such a magic existed, but I knew it was something I wanted and, more than that, needed in my life. It wasn't until I was older that I learned the name for The Force that inspires and fascinates me as much at age forty-three as it did as a five year old sitting in that darkened movie theatre.

The name for it is storytelling. Also, those laser guns are pretty cool...

My Grape Year Has Arrived on Kindle!

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My Grape Year is available, as of this morning, on Amazon's Kindle. Just click here to check it out. There is nothing quite so satisfying as hitting the "publish" button on a new book and this one particularly so. Here are my top five reasons:

1. It is so far the most downright romantic book I have ever written (all about the year Franck and I met).

2.  I realized how lucky I was to conduct my first real love affair before the age of emails, texts, and cell phones.

3. I got to revisit the first time I tasted snails.

4. I managed to write this book during a year of serious health shitstorms, including hospitalizations and a full week-long work-up at the Toronto Transplant Clinic to see if I was ready for a liver transplant yet (verdict: not yet - still too healthy).

5. My eighteen year old self taught me all over again that the universe has a plan for all of us and that we all have to fight for our own personal fairy tale.

So, for the meagre sum of $3.99 you can purchase and enjoy My Grape Year for yourself. The paperback will be available on Amazon as well and at local bookstores in approximately 2-3 weeks. I'll be sure to announce that on here.

I wrote My Grape Year with my awesome tribe of readers in my mind and close to my heart. You have supported me, made me laugh, and made me think during the writing and editing of this book. More than anything, I cannot wait to hear what you think.

Last Minute Leap-of-Faith (and Leap To France!)

P1010679-1  

I won't entirely believe it until the airplane actually takes off to Paris with me inside.

We made a spontaneous, last minute, leap of faith decision and bought tickets last Sunday to leave for a month at our house - La Maison des Chaumes in Burgundy, France this Sunday.

It has been such a weird year with my health (you need a transplant! No! Wait! You're still far too healthy for a transplant! But you do need to go to the hospital again!) that I feel scared writing those words, as though I'll jinx myself and I'll land myself on an IV drip rather than on an airplane in three days time.

Still...my PSC specialist in Calgary encouraged me to travel now. He said, "Sure, you can get sick and end up in the hospital, but that can happen just as easily while you are sitting at home in Victoria as in France." It would suck to be sick in France, but at least I would have the satisfaction of knowing that my kids are visiting with their cousins and grandparents and friends and having a lovely time in Burgundy. Besides, I spent a week in the hospital in Beaune after having Clementine and as far as hospitals go it is a pretty sweet place to be - three course meals, coffee and petits gateaux that come by on a trolley every afternoon...I was waited on hand and foot and actually read Ken Follett's "Pillars of the Earth" from cover to cover in the six days following my C-section.

Living with a life-threatening illness has taught me many things over the past three years but the lesson that I keep circling back to again and again is that I have to live for the NOW. Also, shit happens in life. Sooner or later, pretty much everyone will encounter their own personal shit storm. All anyone ever has is The Present (yes, with capitals) - ill or not. We must throw fear to the winds and tackle that sucker. It is, as far as I can tell, the only sane way to live life.

So I thought to myself, "Eff it. Let's at least try." Then I pressed the "purchase tickets" button on the Air Transat website. Ready.Fire.Aim. That's my motto.

So for the next month I will be eating cheese, baguettes, pastries, looking longingly at the wonderful wines I can't drink, taking a gazillion photos, soaking up every moment with my beloved French family and friends, scoping the markets and the vide-greniers for antiques...I may also have a little sejour in Beaune's Club Med (aka the hospital) but that is OK.

This may delay the publication of My Grape Year by a few weeks. Right now it is in the hands of my copy editor. Once I make those final changes there is really little else to do. I am taking my laptop with me but my goal for this vacation is play, not work, so I'll just see how it goes. It will be published soon though - very soon...I am so excited to hear what you think and I am determined to craft the best possible story for all my fantastique readers.

In the meantime, of course, this gives you a little extra time to gain some additional entries for my "Race Me to La Fin" contest. I am receiving several emailed entires per day and rest assured they are all going into my 'contest' folder and are being counted. In particular, I am only four reviews away from hitting 200 reviews for My Grape Escape so if you could write one to receive yet another contest entry I would love you forever - promis!

I will be posting photos and snippets of our Burgundian adventures on my author Facebook page, my Instagram account, and my Twitter Feed (where yesterday two of my writer idols - Cheryl Strand and Elizabeth Gilbert 'favorited' one of my tweets...verklempt).

In life and in travel my new mindset is not to strive for a perfect vacation or a perfect month, but rather to be on the lookout for perfect moments. This is just another version of Franck's Aunt Renee's petit bonheur du jour approach to life that I describe in My Grape Escape and which resonates with so many readers.

I will gather up and cherish these perfect moments like the shards of beach glass I collect. They are the closest thing I have found to capturing eternity in my hands.

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.

 

 

Things You Like

IMG_5497.JPG One of my latest Saori weavings on the chair and pillow I found at Value Village. He he he. 

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Here are two lists for your afternoon edification:

Things I Should Like: running marathons, cooking healthy meals for my children, using my time efficiently, drinking green smoothies, reading highbrow literary fiction, playing board games, getting my accounting in order, vacuuming my house, watering and weeding garden, meeting new people, ironing...

Things I Actually Like: wasting time, eating chocolate, drinking coffee, beachcombing, writing, Star Wars geekery, crystals, saori weaving, painting, napping, reading Regency Romance, consignment shopping at Value Village and similar stores, talking to my children...

These are by no means complete lists and, let's face it, pretty much every adult life is full of obligations where one is  forced to pull on one's big girl / boy panties and simply do what is necessary. I have to undergo a lot of unpleasant medical exams, sit through many an unwanted doctor's appointment, knuckle down and complete the endless paperwork that comes with being on disability, edit my books when I feel like painting, pay attention to Franck when he explains the new Excel spreadsheet he set up for my writing revenue and expenses (bless), et cetera et cetera.

However, we all have at least SOME spare time. My life has changed radically since I stopped filling it with activities plucked from the first list and instead filled it with things from the second, Things I Actually Like.

I am preparing my part in the Moonrise Creative "Unlocking Your Creativity" workshop this Saturday which I am SUPER EXCITED about (just sayin'. Oh! There's another thing I love! Workshops!). I will be leading a bunch of free writing exercises to help unearth our creative selves and free them from the blockages that hold so many of us back. One of the favourite prompts that I have come up with is: "Here is a list of things that make me happy."

On Saturday, I am going to preface this writing prompt by clarifying that this should not be a list of "things that should make me happy" or "things that other people think should make me happy" or "things I wish made me happy" but actually "THINGS THAT MAKE ME HAPPY." There is a vast and crucial difference.

The list should by definition be quirky, bizarre, humble, grandiose, illogical, and unique...you know...kind of like you.

I have no idea why Star Wars geekery makes me happy, but it has from the time I saw Star Wars IV at the Cineplex Odeon when I was six years old. I have no idea why I love shopping at consignment stores ("treasure hunting" as I think of it) but I have ever since I started a part time job and began earning my own pocket money when I was a teenager. I no inkling why I was designed to be a writer, but besides being born with the "what if" gene I remember writing a short story when I was seven about my Scottish great-grandfather Fletcher and my cat Pandora dying and feeling transcendent when I finished it, and even better when my teacher wrote that she cried when she corrected it.

I always tell my girls this, "Pay close attention to what makes you feel happy and make a mental note. Then, find ways to incorporate more of that into your lives."

But then, take board games...I simply cannot make myself care if I win or lose, and frankly would rather shoot myself in the head than embark on a game of Monopoly. I just want to sit around and talk to people.

Ironing makes me want to punch somebody and the only time our iron is ever taken out of the cupboard is for craft projects. As a result it reeks of melted plastic (Clem's melty bead phase) and probably is no longer fit for clothes anyway.

No one has solved the celestial mystery of why we love what we love, but being honest about what makes us happy and incorporating as much of it as possible into our lives can be transformative. A life created for the irreplaceable you is so much richer than a life created for someone you are not, but think you should be. It is so much happier. 

I can't wait to learn on Saturday about the things that makes the workshop participants truly happy. How about you? What things do you actually like?

And, to quote one of my favorite lines from The Princess Bride, "This is for posterity sake, so please be honest."

 

 

The Best of The Worst of Me

Close-up of old typewriter 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.

 

Woo Cannot Fail, It Can Only Be Failed

水晶の結晶とグラスキャンドル Yesterday, the alternative health universe lost one of its stars, a charismatic Australian woman named Jess Ainscough, better known as the "Wellness Warrior". She died at the young age of thirty after seven years of trying to cure her very rare form of cancer by eschewing traditional cancer treatments and opting for alternative therapies, such as Gerson therapy which requires lovely things such as coffee enemas every four hours.

Jessica's death upset me. Dying at thirty before having kids, before marrying her honey, and before realizing so many dreams is a human tragedy. Also though, I am pissed off that she was both a victim and a perpetrator of a set of beliefs that pressures sick people to choose between traditional (western) medicine and alternative therapies (woo). Since being diagnosed with PSC I have felt this pressure in many subtle and not-so-subtle ways.

I will not lie, I love me some woo.

I have a meditation altar set up in my bedroom, complete with my healing crystals, a sellinite candle, and pieces of beach glass.

Franck said to me recently when he came upstairs to find me meditating in front of my lit candle (to purify cosmic energies), "all you're missing is an eagle feather."

"I know. I totally need one," I said.

I am a big fan of vision boards (on Pinterest) and live in the hope that the universe will manifest my wishes of a New York Times Bestseller, a TED speaking engagement, and a trip to Sanibel island with my mom to go beachcombing. I am a devoted patient of reflexology and a Reiki-type energy massage. I believe that acupuncture can be helpful in many situations, same for yoga and visualizations. I have even done a past life regression that took me back to not one, but three past lives. Fascinating stuff.

Most days I down a monster smoothie packed with kale, probiotics, hemp, and chia seeds. It tastes like stagnating pond scum, but I know it is good for me. Maybe my smoothie is more about nutrition than woo but the line between the two in the alternative health world is often very fine indeed.

Still, nothing annoys me more since being diagnosed with PSC than people (often people I barely know) suggesting that I go on a liver cleanse to heal myself or just think positively. The implication is, of course, that I could heal myself if I followed their suggestions and believed in it enough. If it didn't work, it would clearly be my fault because I didn't do it right.

I religiously did acupuncture and Chinese herbs for a year and a half after being diagnosed with PSC, with the full consent and knowledge of my hepatologist.

I became increasingly uncomfortable, though, with my Chinese Medicine Doctor. First of all, I could discern no positive effects of her treatment besides temporary relief of some symptoms like itching. My blood results were getting worse and I was clearly getting sicker. I was bothered that she kept blaming this on my traditional doctors, even though they were not treating me with anything at that time (the only available treatment for PSC is an eventual liver transplant which tends to be a one-shot deal).

When I started to move closer to transplant and decided to discontinue the herb portion of the C.T.M. treatment because it could eliminate me from transplant eligibility, she never let an appointment go by without telling me how she had cured other liver patients with herbs or how she regretted my decision to stop them. I was being pushed to choose between traditional medicine and alternative medicine and I resented it.

Despite my lifelong love of crystals and the occult I never, not for a moment, considered abandoning western medicine in favour of woo for my PSC. It would not be my reflexologist who would be performing life-saving transplant surgery, after all. I sought out the best care I could find, which means for me flying to Calgary on a regular basis to meet with a hepatologist who has the fourth largest PSC practice in the world and is a leader in the field, and being assessed by the world-renowned liver transplant clinic in Toronto.

I do not think my PSC is a "gift" from the universe or was sent to me for me to learn some cosmic lesson. I make a conscious choice to give my experience meaning (I'm a big fan of  Vicktor Frankl) but I see PSC for what it is - a nasty, cruel disease that strikes indiscriminately, just like cancer and ALS and heart defects and all the myriad ways a human body can break down.

Traditional medicine is by no means perfect. I have been subjected to skilled but inhumane doctors who really shouldn't be allowed to talk to patients or, in fact, other human beings. At all. Under any circumstances. Things are misdiagnosed or diagnosed too late, treatments can be brutal and sometimes fatal. Sometimes, even though both doctor and patient have tried their best, people die. When this happens I remind myself that we are all headed to The Terminal on this bus of life, it is only a question of how and when.

I have seen fellow PSCers die. They have thought positively and fought until the bitter end and done everything "right". Most often their deaths can only be blamed on one thing -  this cruel disease. Often life or death boils down to the one thing that few want to accept - sheer dumb luck.

I have also, though, seen many lives saved by Western medicine. People who go from deathly ill to thriving after a liver transplant, or who recover from bile duct or liver cancer with the correct protocol. There are a lot of these miracles in our community.

So while I love my woo, I refuse to buy into the belief that woo alone will heal me, or that western medicine is evil. People who damn western medicine and promote woo will say that it is precisely because I don't believe that woo will not heal me. This, to me, is the crux of my problem with woo.

Woo cannot fail you, you can only fail the woo.

If chemo and surgery don't work, nobody is going to blame you - they are just going to blame your disease for being so goddamn unforgiving. If you opt for woo to the exclusion of traditional medicine for a serious disease and you die anyway, like Jess Ainscough, many people whose theories she championed (like those Gershon folks) will probably say that somehow she didn't do things right, or thoroughly enough, or her beliefs were too flimsy. That is bullshit. Who needs more guilt in their life, especially when struggling with a serious illness?

We can do our best to positively influence our lifespan and our quality of life, but the truth is we cannot control death.

We can do our best - trying to eat well, doing things that make us feel fulfilled and happy, meditating, yoga-ing, praying to our crystals, consulting the best specialists we can find and undergoing recommended treatments. We can do all of this and still die. Hopefully though somewhere along the way it will sink in, as it has done for me (finally!), that improving the enjoyment of my day to day life is even more important than trying in vain to stage-manage its longevity.

We cannot know how our stories will end. We cannot control the uncontrollable. Anyone who tells you different is trying to sell you something. Sadly, Jess Ainscough was not only a victim of this nefarious sales pitch, but in time ended up inflicting it on countless others struggling with life-threatening disease.

Stay open. Stay skeptical. Remember this - a closed mind is a dangerous mind.

Badass Surrender

Kapitulation 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.

 

 

 

The Flotilla of Doubt

Wave 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...

b37f2b3a5583c8e00fdd6da426231978 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.

 

Us Broken Shells

photo.JPG  

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.

 

Good Night, Laura. Good Work. Sleep Well. I'll Most Likely Kill You in the Morning...

The-Princess-Bride-the-princess-bride-4546832-1280-720 Fear and I have been getting rather hot and heavy since my wonderful few days at the Surrey International Writer's Conference at the end of October.

When I introduced Clementine to the wonders of the movie The Princess Bride a few nights ago, it struck me that the past two and a half years living with my auto-immune bile duct & liver disease has been a lot like the years after Westley was captured by the Dread Pirate Roberts.

If any of you didn't spend years memorizing every line in The Princess Bride (and if not, what is wrong with you?) The Dread Pirate Roberts captured Westley on the high seas, but let him stay alive and put him to work on the pirate ship. The Dread Pirate Roberts would always bid Westley good-night in the same manner, "Good night, Westley. Good work. Sleep well. I'll most likely kill you in the morning.".

My liver disease bears an uncanny resemblance to the Dread Pirate Roberts. The thing with PSC is that it greatly increases one's risk of liver cancer and bile duct cancer. Now there are cancers and there are cancers. Bile duct and liver cancers belong in the latter category.

When I asked my PSC specialist what could be done if they found bile duct cancer in me he said, as dispassionately as a waiter reciting the specials of the day, "Usually not much. Generally all we can offer is palliative care. Death usually comes within eight months."

"Can I do anything to prevent it?" I asked.

"No."

Right then. I'll just curl up into a ball, rock back and forth, and suck my thumb.

The same specialist emailed me a letter to include in my (obscenely large) medical file in which he wrote that I am at a "tremendous" risk for bile cut cancer.

Being a writer I leapt on the significance of this word. "Tremendous," I wrote in the email I fired back immediately. "Now that is a strong word. How exactly did you mean tremendous in this context?"

He wrote back. "Your large duct PSC and the chirrotic charge of your liver mean that you are at significant, aka "tremendous," risk for bile duct cancer."

Alrighty then.

About 35% of PSCers develop bile duct or liver cancers, so I try to remind myself that I have more chance NOT to get it than to get it. Also, there are many, many other ways PSC can kill me besides cancer (which doctors have kindly spelled out in detail on numerous memorable occassions) but my mind has latched on to this fear in particular. I did the same thing when my girls were toddlers. I was paranoid about them choking on things but wasn't unnerved one jot by the idea of dropping them, parking lots, or electrocution. Minds (especially mine) + fear = weird like that.

So, part of living with PSC means that I am fearful about my PSC morphing into cancer pretty much ALL THE TIME. It is one of my first thoughts on regaining consciousness every morning, and it is that asshole of a thought that always (dressed in black and wearing a mask) who comes back to taunt me regularly throughout every day.

Every morning, after I am fed up of laying in bed feeling scared, I get up, reminding myself of something Winston Churchill said (and say what you will about the British Bulldog, he was a guy who knew a thing or two about writing and struggle and perseverance), "when you are going through hell, keep going."

Prodded by Winston's invisible cane, I make my way downstairs. I spend my days looking after my kids the best I can. I give Franck a kiss. I go for a walk with a friend. I deal with all the ridiculous administration of illness. I laugh and watch soccer games and enjoy every sip of my coffee. I write. I write. I write.

Like all PSCers, I am monitored for cancer often. I have tumor marker blood tests every six months, MRI's of my liver and bile ducts every six months and extra tests every time I am hospitalized with cholangitis. I knew I was coming up for a set of my cancer marker blood tests after Surrey. I went in to Lifelabs on Halloween Day (may as well concentrate all the spookiness in a 24 hour period, right?) and since then the Dread Pirate PSC perched on my shoulder and taunted me with lots of grim films of the future. His currency is high drama and he somehow always manages to get my attention.

I got my bloodwork back on Wednesday and my tumour marker score was actually the second lowest it's ever been (it was 102 and it has gone up to 148 before). I was pretty pleased. My specialist, however, was not as pleased and wants me to repeat it in a month. Good night, Laura, Good work. Sleep well. I'll most likely kill you in the morning...

I have survived far worse scares. In September 2013 I had an invasive exam called an ERCP where they push a scope into the bile ducts in my liver to take brushings and biopsies to specifically rule out bile duct cancer (they were that worried about it). I had to wait an ENTIRE MONTH to get the results. The Dread Pirate PSC was omnipresent during that entire month. To be frank, he was a complete douchebag.

This July my PSC had been progressing rapidly and landed me in the hospital with cholangitis for several weeks. I had to get three MRIs within a week to rule out bile duct cancer. Right after Christmas I will have to go in and get more MRIs...it is basically never-ending. Like Westley, I live with a Dread Pirate taunting me with my death every day and every night.

Still, in The Princess Bride Fire Swamp scene, Westley talks about his years with the Dread Pirate Roberts as "a wonderful time."

During these years in the face of fear Westley gained the strength to scale the Cliffs of Insanity, the resistance to withstand torture in the Pit of Despair, the ingenuity to figure out plan to storm the castle and rescue Buttercup, and most rad of all, the swordfighting skill to best Inigo Montoya. I rather suspect it was the constant threat of death that added an urgency, appreciation, and an almost superhuman focus to his days.

My fear isn't teaching me swordfighting (maybe one day, fingers crossed...), but it has pushed me to write and publish three books and get me well on my way on my fourth. Who knows? It may drive me all the way to the New York Times Bestseller List. Even if it doesn't it will make me appreciate each sip of coffee, kiss, sunset, writing session, and book launch party along the way.

 

 

 

Hang Out With Moi

photo[9] Come hang out with me and let's talk writing, self-publishing, and mustering up the courage to create:

FACEBOOK - You can find me at www.facebook.com/AuthorLauraBradbury where I procrastinate a tad too much, posting anything useful and inspiring about living a writerly life.

TWITTER - I fart around on here as @Author_LB , hanging out with other writers and the self-publishing community (it gets lonely sometimes), posting word counts to keep me motivated, and participating in writing sprints.

INSTAGRAM - I keep a photo diary of my daily life as laurabradburywriter : the good (my family, my writing life, and the beach), the bad (my rare auto-immune liver disease), and the ugly (even ugly on Instagram looks beautiful, which is why we are all addicted).

PINTEREST - Eh oui, I too have fallen down this vortex of gorgeousity. My boards are under my vacation rental persona as graperentals and will likely make no sense to others and illustrate once and for all that my brain is a messy place. However, suffice to say I have discovered the art of creating mood boards for my stories and I am hooked.

CRUSHES - Philosophy of Preschoolers - Volume 2

I just wrote down this recent conversation between Clem and Anna for Volume 2 of Philosophy of Preschoolers. It just gives you a little glimpse at the nuggets of wisom contained inside! ***

Clem: "I still have a crush on Riley you know Anna."

Anna: "Why are you telling me that Clem?"

Clem: "It's important. I realized that maybe after the summer you didn't realize that I still had a crush on Riley after all this time, but I do. Cousins need to tell each other important stuff."

Anna: "You're right. I'm having a princess party for my fifth birthday. I'm going to have a princess cake and princess crowns and-"

Clem: "Why are you telling me this Anna?"

Anna: "Because it's important."

Clem: "But not important like a crush."

Anna: (mutinously) "It is. Princess parties are so important...anyway, what does it mean to have a crush?"

Clem: "It means I still love Riley."

Anna: "Why is it called a crush then? Why don't you just say that you love him?"

Clem: "Well...it's called a crush because when you really love someone you want to...you know...crush them on the ground or against a fence."

Anna: "That would hurt them."

Clem: "You have to crush them otherwise they might escape. They need to be trapped."

Anna: "Oh. That makes sense."

Clem: "You don't want the boy you love to escape, you see, but they always try to escape and run away. That's what's so hard about crushes."

Anna: "I'm glad I don't have a crush."

Clem: "It's not easy."

 

She Let Go

capricious-yogi-letting-go  

After the past few days of feeling tortured by trying to control the uncontrollable and understand the un-understandable, I finally pleaded with the universe for some help this morning. Minutes later, I checked my email and read this poem that a thoughtful friend had sent me entitled "She Let Go" by Rev. Safire Rose / E. Holmes Rev.

***

She let go.

She let go. Without a thought or a word, she let go.

She let go of the fear.

She let go of the judgments.

She let go of the confluence of opinions swarming around her head.

She let go of the committee of indecision within her.

She let go of all the ‘right’ reasons.

Wholly and completely, without hesitation or worry, she just let go.

She didn’t ask anyone for advice.

She didn’t read a book on how to let go.

She didn’t search the scriptures.

She just let go.

She let go of all of the memories that held her back.

She let go of all of the anxiety that kept her from moving forward.

She let go of the planning and all of the calculations about how to do it just right.

She didn’t promise to let go.

She didn’t journal about it.

She didn’t write the projected date in her Day-Timer.

She made no public announcement and put no ad in the paper.

She didn’t check the weather report or read her daily horoscope.

She just let go.

She didn’t analyze whether she should let go.

She didn’t call her friends to discuss the matter.

She didn’t do a five-step Spiritual Mind Treatment.

She didn’t call the prayer line.

She didn’t utter one word.

She just let go.

No one was around when it happened.

There was no applause or congratulations.

No one thanked her or praised her.

No one noticed a thing.

Like a leaf falling from a tree, she just let go.

There was no effort.

There was no struggle.

It wasn’t good and it wasn’t bad.

It was what it was, and it is just that.

In the space of letting go, she let it all be.

A small smile came over her face.

A light breeze blew through her. And the sun and the moon shone forevermore…

Writing: A Lifeline

the-life-line

As you may know, two years ago life served me up my mid-life crisis on a platter. It came in the form of a phone call from an insurance company who had just performed medical exams on Franck and I for life and disability insurance.

"Ms. Bradbury?" the woman said. "I'm calling to inform you that your application has been denied by our underwriters."

"There must be a mistake," I said. "I'm perfectly healthy." In fact, the reason Franck and I applied in the first place was because we were feeling so goddamned self-satisfied with our lifestyle since moving back to Canada from France. It included a lot of running, freshly caught fish, and an abundance of kale.

"There's a problem with your blood test results," she said. "You'll have to take it up with your doctor."

Two months, many sleepless nights, countless blood tests, an ultrasound, an MRI, and a liver biopsy (let me tell you, those are a gas) later my gastroenterologist sat Franck and I down in his office and diagnosed me with PSC, also known as Primary Sclerosing Cholangitis. It was a very rare autoimmune condition, he said. It was poorly understood, he said. It was completely unpredictable, he said. There was currently no treatment or cure except a liver transplant, he said.

What did I do the day after, when I could barely get out of bed due to the weight of the diagnosis that was draped over my body like a lead blanket? I stumbled downstairs, turned on my computer, and I began writing "My Grape Escape." After writing for a few hours, I picked up a pen and scribbled in capital letters on a post-it note, "FUCK YOU. I'M NOT DEAD YET." Maybe it was a message to my PSC, maybe it was a message to life...to this day I'm still not entirely certain. Anyway, I stuck the post-it to my computer screen where I could see it and kept writing.

I wrote on days when fear felt as though it was devouring me from the inside. I wrote on days when I felt sure that I could not live with the uncertainty of my future for one more second. I wrote on days when I saw all my friends and family through a veil of anger, wondering, "Why me and not them?"

My writing does not stop the progression of the disease - nobody knows what can do that or if it is even possible. It does, though, give me a lifeline on the darkest days.

My writing distracts me and helps me daydream of something other than bile duct cancer and liver transplants. It makes me grateful for the incredible life I have lead so far. It reminds me of lessons life has taught me in the past and that I need to remember now. It allows me escape in my imaginary world. It gives me a way to contribute to PSC research (10% of all of my royalties are donated to PSC Partners for this purpose). It also connects me with the world through my readers and other writers.

Most of all though, it allows me to flip the metaphorical bird at my diagnosis. There is nothing as defiant or life affirming as the act of creation. The words I have written are out there now and only world oblivion can erase them.

Yesterday I met up with a new doctor for my PSC, one who finally seems to be an expert in the subject and who was the first to offer me A Plan. As much as this was a huge relief, he was blunt about the steeplechase I will have to run in order to beat my PSC.

He confirmed that my disease has progressed to the stage where I have a cirrhotic liver (without any of the fun that heavy drinking writers like Bukowski and Hemmingway had getting there, which is a complete pisser). He hopes to maybe squeeze "one to three years" out of my current equipment, but a transplant is definitely in my future and sooner rather than later. That is, if I can pass the rigorous testing that ensures I could survive the operation in the first place. That is, if (hold on to your pants here folks, because this almost scares mine off every time, and my underwear too) I can dodge the bullet of bile duct, liver, or gallbladder cancers that PSCers are far more prone to than the general population. I have heard this same information from many other doctors in the past, but the harsh realities of my PSC shatter my soul every time. I walked out of the hepatology clinic dazed anew with terror and wondering how I was ever going to survive the next ten minutes living with this cruel disease, let alone the next ten years.

Yet what did I do first thing this morning when I woke up feeling as though I was trapped in a nightmare I couldn't escape? I started composing this post in my head and set a goal for how many words of My Grape Village I wanted to edit today. Now, I am at my computer. Writing. Creating. Defying. It's all I can do but you know what? It’s actually a lot.