Us Broken Shells

 

I beachcomb several times a week on what my bevy calls "our" beach at the end of Oliver Street. It is part meditation, part therapy, and part religion. My main focus is beach glass but I pick up other pieces of intriguing flotsam and jetsam like bits of driftwood and shells.

Last week I was beachcombing with Clem. We climbed up a rock that the seagulls and crows had been using to crack shells to eat the yummy little sea creatures inside. I picked up a few and showed my handful of shells to Clem.

"Why do you only pick up the broken ones?" she asked me.

There were many intact shells scattered at our feet - ones that the birds hadn't managed to break. Clem was right though, I never pick up whole shells to take home.

"I don't know." I shrugged. "I just do."

A few days later as I arranged my new finds on half a whitewashed oyster shell, I found myself contemplating unbroken and broken shells.

Whole shells may be pristine but they have no secrets. One is more or less interchangeable with any other. The broken ones, however, are endlessly unique.

One that I picked up is broken on the top so that I can peer down its inside and see the spiral helix that disappears into the most extraordinary deep purple colour. Another, sheered in half, shows a perfect cross-section of the interior architecture of the shell and the variety of other-worldly hues contained inside.

If there is a word to describe how I have been feeling in the past few days it is Broken.

Broken by the weight of uncertainty of the next year. Will I be approved for a transplant? Will I find a donor? If so, how the hell am I going to move to Toronto for several months to make this happen?

Broken by the thought of my upcoming appointment with my PSC specialist and memories of how the last one left me so emotionally shattered that it took me over a month to pick up the pieces.

Broken by having to repeat my tumour-marker blood test in a few weeks.

Broken that I can't seem to conjur up the faith that seems to come to others so easily.

Broken by feeling myself get sicker and less able to cope with it all.

Broken by the chronic lack of organ donors and the knowledge that people like me die needlessly waiting in vain for one to come available.

Broken by the constant itching and nausea and feeling like I have the flu every day.

Broken at just wanting to set down this burden but knowing that I can't.

Since sharing my story in my keynote speech at SIWC and here on my blog I have had many people contact me and tell me about how they too are broken. Life can break us in a myriad of ways; the death of a loved one, a critical health challenge, parenting a challenging child, a painful separation, mental illness, heartache, loneliness...I am beginning to think that getting broken is an unavoidable part of the human journey.

Even though I have been struggling too much with my own broken state to get back to even half of the incredible people who have shared their stories with me (mea culpa), I am moved by each and every one.

I wish they could see how beautiful I find them. They open up and show me their strength and faith and tenacity and hope and empathy and generosity and grace. They are like my broken shells, sublime in their broken-ness, with a lustre that would be invisible if they had remained intact.

It is often difficult to see the beauty in our own broken state, or to realize that the majority of people around us are also broken or have been broken in the past. I too am seduced by the images of perfection we are constantly served up by magazines (I mean you, Real Simple) and carefully curated websites and public profiles. I find myself thinking, my life should be like that.

Ultimately though, accepting our broken-ness and sharing it is far more compelling than a flawless exterior.

I was stuck on how to end this blog post until yesterday, when I received a message from a high school friend that I haven't seen in over twenty years:

"I wanted you to know that you have inspired me to do something that is out of my comfort zone. I am donating a kidney on Thursday to a father in Max's class. Keep promoting organ donation because your words are working miracles."

Celebrating our broken-ness leads to interconnectedness, and interconnectedness leads to miracles. So if you too are a broken shell, know that you are beautiful and brave. Also, know that your glow reaches farther than you could ever realize.

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

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.