word warriors

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.

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.

 

Hand-Out from Self-Publishing Workshop - SIWC 2014

Screen Shot 2014-10-28 at 10.45.53 AM If you are anything like me, you LOVE handouts. Here is the one I prepared and handed out at my workshop entitled "Could self-publishing be the perfect solution for you?" at SIWC 2014. If it can help you in any way, I am thrilled.

***

Let me preface my talk with explaining my stand on self-publishing. I do not believe that there needs to be such a conflict between the self-publishing and the traditional publishing communities, nor do I feel as though the division between the two needs to be as stark as it is so often depicted. Often, engaging in gratuitous conflict is just another form of procrastination.

I firmly believe that for some books and some writers traditional publishing is the right fit. For other books and other writers, self-publishing is the better solution. More and more I think that a hybridized version of publishing is going to start to occupy that middle ground between traditional and self-publishing, whereby an author may hold their ebook rights but work with an agent or publisher for things like paperback distribution, foreign rights, and film / TV rights.

I think there is room for everyone and I am just grateful that, as a writer, there are so many options now for sharing my work.

***

Reasons why Self-Publishing is the Right Solution for moi (any of these sound familiar?)

  1. I am incurably impatient
  2. I like being my own boss and want to choose my collaborators
  3. Had several ideas re: how to launch / market my first book
  4. Enjoy marketing / social media
  5. Web presence already built up thanks to graperentals.com
  6. Aspects of my books (i.e. my struggles with panic attacks / anxiety) didn’t “fit” with mainstream publishing
  7. Wasn’t prolific when I began, but definitely writing more and faster was a goal (I felt I had far more than one book in me)
  8. Am happiest when working on projects from beginning to end. I’m definitely a “project person”
  9. Ongoing health issues meant I did not want / need stress of having to meet other people’s deadlines and expectations
  10. Lifelong allergy to authority in any form ;)
  11. Wanted to donate 10% of all my writing-related earnings to PSC Partners for researching PSC.

 

What I have learned (“DONE IS BETTER THAN PERFECT!” is my new motto)

 This being said:

  1. Think strategically about what you are good at and what is a time suck for you. I am terrible at the technical / formatting side of things and it would take me forever (not to mention drive me insane) to try to learn this aspect of self-publishing. For this reason I hire a formatter to format my MSs for Kindle and Createspace. Same goes for graphic design (i.e. covers, etc.). DELEGATE EVERYTHING THAT YOU DO NOT ENJOY AND MORE IMPORTANTLY, WHICH TAKES PRECIOUS TIME AWAY FROM YOUR WRITING.
  2. If, like most of the human race, you never seem to have enough time, you will have to make strategic decisions about how to spend it. For example, I made a conscious decision than instead of making a push to get my first paperback book (MY GRAPE ESCAPE) distributed and in bookstores, I would first finish the second book in the series (MY GRAPE VILLAGE) so when I did turn my attentions to this I would get more bang for my time spent. If your time is limited you will have to make choices and stick to them.
  3. Spend the time and money on an EXCELLENT cover design. It makes a huge difference. There are far too many bad covers out there on self-published books. Like kitchens in home renovations, a great cover will give you powerful bang for your buck.
  4. Spend the time and money on at least 2 essential edits – a thorough content edit and a great final copy-edit. Even with these, errors will slip through!
  5. Find at least 2 people whose judgment you respect as beta-readers.
  6. I have always found the formatting stage just before publishing to be hellish and unbelievably nit-picky. I remind myself “it’s always darkest before the dawn” and that having that completed book in my hand will make it all worth it.
  7. Do not fear bad reviews. In fact, they do you a favour by legitimizing your good reviews (they are also occasionally hilarious). Make peace with the fact that you will never please everyone. Find and cultivate the tribe of people who love your writing. Write for yourself and for them.
  8. Keep writing and keep finishing what you start!
  9. Your writing and self-publishing muscles will grow stronger – guaranteed!

 

 My process is still evolving, but this is roughly what it looks like now.

  1. Exploding with inspiration after SIWC, begin sh!tty rough draft in November for NaNoWriMo. Vomit atrocious writing and ideas in very crude form on Word document. Here quality and structure are ignored and word count is king!
  2. Do first big edit – arrange word barf into rough chapters of more or less equal size, make a note of what scenes / bits are missing and which bits need to be trashed. Go through and make it readable.
  3. Do second edit – here look at story structure and storytelling technique. Pay close attention to language. Trash any useless words (adverbs!) and tighten things up.
  4. Send to content editor. Get moving on cover design NOW.
  5. Get content edit back. Incorporate edits.
  6. Send edited MS to at least 2 carefully selected beta readers.
  7. Get beta readers comments back. Incorporate.
  8. Send MS off for copy-edit.
  9. Incorporate copy edits.
  10. Send edited MS to formatter.
  11. Make sure graphic designer has uploaded / sent graphic materials ready to be uploaded.
  12. When all of this is ready, hit the “Publish” button (this is REALLY fun)
  13. Ta Da! You have a published book!

 

Resources:

SIWC! - Network with people here. I found my graphic designer, social media guru, and content editor here. Talk to people. You will find that many writers offer up excellent quality side services.

Elance.com - Great for having people bid for any of the techie stuff you need to get done. Super useful site.

Indies Unlimited - Wonderful articles on self-publishing and a unifying force in the self-pub world

Martin Crosbie - Local White Rock self-pub success. Martin always posts extremely useful articles for self-published authors, especially issues that affect Canadians (can we say withholding taxes?). Read his “How I sold 30,000 ebooks on Kindle”.

www.seancranbury.com - Sean Cranbury is a social media guru, especially helpful to self-pub authors.

Formatting - My formatters are Paul and Tammy Lechner of Kindilize and they are wonderful. To contact them for a quote email palechner@gmail.com

Graphic Design - The amazing Rebecca Sky did my covers and is crazily talented. She is also a successful self-pub writer in her own right. To get a quote from her, email AuthorRebeccaSky@gmail.com