The Words of Laura Bradbury
When I was diagnosed with a rare and untreatable auto-immune liver disease five years ago called PSC I had no idea how to cope. My family has always had horse-shoes shoved up their rears as far as health went. Nobody in my family had ever, as I have come to call it, "lost their medical virginity" i.e. been diagnosed with a disease that could prove fatal.
I had no road map to follow. Franck, however, did...
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.
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).
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.
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.
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.
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.
My lovely author friend Karen Dyer (writes as KC Dyer - check out her awesome YA fiction) just interviewed me for her "Indie Tuesday" blog segment. Watch for the upcoming self-pubbed release of her novel "Finding Fraser". I have had a sneak peek and it is ADDICTIVE - a must for anyone who loves humour, romance, and Outlander. Read below for my musings on self-publishing, rules for writing, and my visceral resistance to linear thinking! Here's the direct link if you'd like it.
Hola! This week we have an Indie celebrity in our midst, in the form of Laura Bradbury.
Laura's forte is the self-published memoir -- and what a story she has to tell! It is filled with romance, intrigue, anxiety, high comedy and a whole lotta wine. Laura's 'Grape' stories are must-reads, and the reading community is getting the message. She's continually posting huge sales, as more people discover her warm, whimsical story-telling style.
Laura's also extremely generous with her hard-won knowledge and has really been helping me in my efforts to get FINDING FRASER out into the world. Let's hear a bit about her experiences, shall we? She's got a lot to share, so I suggest you get a cup of tea -- or a glass of wine! -- and enjoy!
KC: Are you an outliner or a seat-of-the-pantser when it comes to writing your books?
Laura: I am definitely more of a panster. I believe planning a book is easier with memoir than with fiction. Each of my “Grape” books covers approximately one year of our lives when we were buying and renovating a specific property in France so there is a very clear cut beginning and end point each time. Initially, I make a rough Excel spreadsheet of bare-boned scene ideas. Then I write a quick and dirty ESRD (Epically Sh!tty Rough Draft) based on these scenes. The more I write the more my memory is jogged so I add a lot of scenes en route. Then I do a BIG edit where I break the ESRD into chapters and add in new ones I realize are missing (usually about one third of the total scenes). I am lucky that I have a crazy-good long term memory. I can’t remember what I ate for breakfast this morning, but the taste of blackcurrant in that glass of wine I drank fifteen years ago? I TOTALLY remember every detail. My next project after My Grape Year (the third book in my “ Grape” series) is a paranormal romance trilogy involving mermaids and fishermen. I suspect I will have to dramatically tweak my writing processs and do a more detailed outline for fiction writing. However, the way I learn things is simply by doing them (verus reading about them or having someone teach them to me) and figuring out what works for me through trial and error. I know outlining will be something I will have to force myself to do though, as I am highly resistant to organization!
KC: How did you choose your titles?
Laura: The Grape Series all have “Grape" in the title I.e. My Grape Year, My Grape Escape, My Grape Village. The Grape is the emblem of all of our vacation rentals in Burgundy (which we call Grape Rentals www.graperentals.com). It is natural, authentic, honest, tied to the earth, and something humble that has the potential to be transformed into something sublime (wine). I liked the play on words with Grape / Great and also having “ My Grape…" repeated in my titles is a hommage to the wonderful “Little House” series that was my first exposure to memoir and one of the first series I fell for as a child. I love this quote which struck me so forcibly when my mother first read my sister and I the “The Little House in The Big Woods” when I was around seven:
When the fiddle had stopped singing Laura called out softly, “What are days of auld lang syne, Pa?”
“They are the days of a long time ago, Laura,” Pa said. “Go to sleep, now.”
But Laura lay awake a little while, listening to Pa’s fiddle softly playing and to the lonely sound of the wind in the Big Woods. She looked at Pa sitting on the bench by the hearth, the fire-light gleaming on his brown hair and beard and glistening on the honey-brown fiddle. She looked at Ma, gently rocking and knitting.
She thought to herself, “This is now.”
She was glad that the cosy house, and Pa and Ma and the fire-light and the music, were now. They could not be forgotten, she thought, because now is now. It can never be a long time ago.
This to me sums up the magic quality of memoir – when my mother read us that book I was Laura Ingalls. Books allow you to live so many additional lives.
KC: Do you have a favourite genre to read -- or write -- in? What draws you in that direction?
Laura: My “comfort” genre is probably Regency Romance at the moment. I love Georgette Heyer and Jo Beverly in particular. I avoid reading memoir when I am writing memoir as I always worry about absorbing someone else’s voice. As an English Literature undergrad I went through years of being incredibly snobby about my reading – I would only deign to read highbrow literary fiction that was shortlisted for the Booker, Orange, or the Giller. However, by my fourth year of my BA I actually stopped reading altogether. I just couldn’t handle one more obliquely drawn character that I couldn’t invest in emotionally (no matter how beautiful the language) or one more story about the holocaust or incest. Highbrow literature at that period was overwhelmingly depressing. I didn’t start reading again until my sister Suzanne insisted I read Diana Gabaldon’s Outlander series. I was so hooked that I am embarrassed to say I actually read Outlander and Dragonfly In Amber at stoplights on the way to taking my kids to preschool (NOT ADVISED). I still believe Diana’s books should come with some sort of FDA addiction warning like on cigarette packages. Thanks to Outlander, it finally hit me that what made me fall in love with books and reading in the first place was the craft of storytelling. I wanted to be transported to another place and often another time. I wanted to be invested in the lives of the characters. I wanted escape. I wanted emotion. I wanted imagination.
KC: This book is part of a series -- where do you plan to go next?
Laura: The “Grape” series will have six books in total (in order, the bold ones have already been published): My Grape Year, My Grape Paris, My Grape Escape, My Grape Village, My Grape Town, and My Grape Baby, plus a few of what I think of as “Memoir-ettes” (novella length memoirs): My Grape Wedding, My Grape Cellar (not akin to Twenty Shades of Grey, but rather about the 13th century wine cellar we renovated under the streets of Beaune), etc.. As you can see I do not write them in order. Whichever story is yelling at me the loudest is the one that gets written next. See above re: my visceral resistance to linear thinking.
My paranormal romance trilogy is definitely a trilogy and the first book is about 85% written, although it needs a serious overhaul. I will probably finish the first book in this series once I finish My Grape Year, although it will really depend on which story is shouting the loudest at me then! I have to say I am intimidated to turn from memoir to fiction, as I know it will be a steep learning curve. That terrifies me and thrills me in equal measure.
KC: Why Indie publishing instead of the traditional route?
Laura: I actually wrote a blog about exactly this topic and here is the list of reasons why self-publishing was the right choice for me:
KC: What's your favourite part of the publishing process? Why?
Laura: Writing a book is a hell of a slog. Still, there is something epic in the feat of writing a book that appeals to me - a bit like climbing Everest or rowing across the Pacific. Most days I write because I force myself, but there are moments when my imagination takes flight or I come up with an evocative turn of phrase or the perfect tempo of dialogue and I feel as though I have been plugged into a force way bigger and more awe–inspiring than myself. I call this "communing with The Great Mysterious". These moments are generally fleeting, and I can also experience them when by the ocean, eating a particularly scrumptious cheese, spending time with my family, meditating, or doing other creative work – painting, making beach glass mobiles, etc. but I get them fairly regularly when writing and they always leave me with a sensation of grace and oneness with the universe. Who doesn’t need more of that?
Also when the box of paperbacks arrive for of latest book…holy moses is that ever satisfying! Worth every ounce of blood, sweat, and tears!
KC: Do you have a preferred format for your books? E-book vs paperback?
Laura: It is ironic that probably around 90% of my writing revenue comes from Ebooks (mainly Kindle) but I actually cannot stand reading books on any sort of screen. I am a diehard lover of paperbacks. For me, the tactile experience of reading an actual book - paperback or hardcover - is like a sacred ritual. Besides, I already spend a lot of time in front of the screen writing and doing my social media stuff. However, I have many girlfriends who are complete converts to ebooks and are permanently attached to their Ipad Kindle app or their Kindle. For them, the ebook thing actually has them reading way more. It’s a personal preference and I keep my mind open. I love my Kindle readers.
KC: What's your favourite review one of your stories has received? [Share it, if you like!]
Laura: Here is a nice one that was posted just a few days ago on Amazon.com for My Grape Escape: "As an avid reader of mainly non fiction I was thrilled to find this author. As the book started I thought ho hum - yet another story about France, renovating the dilapidated house, etc...... However, after a few pages I was hooked. I agonized and laughed with the author till the end. Found her to be refreshingly open about her state of mind. Has a unique gift of describing situations and people. Immediately got the follow up book.”
I especially love the ones where people tell me how my honesty about my struggles with anxiety disorder made them feel less alone with their own struggles in life – mental or otherwise. These always strike a chord with me and make me so glad I decided to stay true to myself, keep my book honest, and self-publish.
KC: Can you name a favourite Indy author or two, and recommend a book?
Well, I am VERY excited about KC Dyer’s upcoming “Finding Fraser”! I cannot wait to get my hands on the paperback of that. Martin Crosbie does lovely memoirs and his blogs about self-publishing are always so generous and helpful. I also love pretty much everything Chuck Wendig writes and he is a stellar advocate for writers everywhere. There are so many talented, insightful Indie authors out there…
KC: And to finish, can you give your best advice to someone starting out?
Laura: I would say the #1 piece of advice would be – FINISH! I kept writing and rewriting the first book in my paranormal romance trilogy for about a decade but could never finish. Then came the day I was diagnosed at age 39 with PSC and all of a sudden I was living with a rare, serious, and possibly terminal illness. My life completely changed in that instant. I started writing My Grape Escape the next morning and vowed to finish. I learned more in finishing and publishing My Grape Escape than I did in ten years of almost finishing my other writing projects. Resist the siren’s call of other projects until you finish your current one. It is as difficult as Odysseus and the Sirens at times, but put cotton balls in your ears, a huge sign beside your keyboard…whatever it takes - FINISH. My word-warrior motto is Write. Finish. Share. Repeat. Here is a printable of that if you need a reminder http://laurabradbury.com/2015/01/28/the-word-warrior-mantra/ .
Also, I try to give myself a word count goal every day whether writing or editing. Usually it is 2000 words. There are many days where I don’t hit it – days when I am hospitalized because of my PSC, days when my three kids have caught contagious diarrhea, days when it is sunny outside and I simply must go beachcombing…life happens, but having a goal is something to shoot for.
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.
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.
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.
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.
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.
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.
Sorry this is a day late - things have been a little hairy for me trying to have the paperbacks of MY GRAPE VILLAGE and MY GRAPE ESCAPE shipped in time for me to bring them to the wonderful Surrey International Writers' Conference this weekend.
Now, however, I am happy to report that we have a WINNER in our draw for a free week at La Maison de la Vieille amongst all the people who signed up for my mailing list. It is (cue drumroll) Elizabeth Theobald!
The winner is automatically generated by some genius that lives in a specialized computer thingy I bought (it's like maaaaaaaaagic!) but I am thrilled to report that Elizabeth is part of my PSC family.
I met her and her lovely husband Kevin (the PSCer, like me) in Denver at the PSC conference this year. We bonded when Kevin and I yanked up our jeans and compared the scars on our legs (from the horrendous itching - a hallmark of PSC) and marveled at how we both looked like we had been mauled by the same werewolf. Kevin told me about how a young man from a youth group he led had offered to donate 65% of his liver to Kevin for a living donor liver transplant (by which time Elizabeth, Kevin, and I were all crying over the selflessness of Kevin's donor). Kevin's transplant happened two months ago. Last I heard Kevin is doing fantastic, which makes me very happy and hopeful indeed.
This prize couldn't be going out to two more deserving, delightful people, So Elizabeth, you have a free week at La Maison de la Vieille Vigne - our 16th century winemakers' cottage in Burgundy, France to use yourselves, gift, donate, or do whatever you want with!
Felicitations!
P.S. A new contest will be coming very soon, so watch this page...
“I am always posting pretty photos from my life and brain downloads on Instagram. ”
