The Best of The Worst of Me

It's been a rough few weeks. After getting out of the hospital in March and finishing ten days of IV antibiotics for my liver infection I enjoyed five weeks of feeling like A Million Bucks. Well, not other people's version of a million bucks, but a significant improvement on the Varying Shades of Shite that had become my norm. Dammit, I'd take it!

I finished editing My Grape Year, arranged the photo shoot in France for its cover, planned a Creativity workshop for the end of May I am super stoked about, even wondered if I may be able to make it back to Burgundy in July. Then, about six weeks after my IV treatment, I started to slide slowly but inexorably downhill. Nausea, increased pain and discomfort in my liver area, fatigue, weakness, and random fevers. It basically feels like a combo of the stomach flu and the actual flu that waxes and wanes throughout my waking hours. There are no longer good days and bad days, but rather good hours and bad hours, or often, good minutes and bad minutes.

The whites of my eyes are no longer white but rather pale yellow and I'm sure the results of my last batch of bloodwork are going to be pretty horrific. I'm still waiting on the doctors to get back to me with A Plan but I know that sooner or later I am heading towards another all expenses paid stay at Club Med. On top of all that, I'm also nearing my yearly colonoscopy / gastroscopy and my 6 month MRI - always stressful as they look for all variety of nastiness that could disqualify me from a potential liver transplant.

So...yeah. Basically a shit sandwich.

I wake up every morning with a lead weight not only in my liver, but in my soul. A lot of that is physical pain and discomfort, but even worse, I think, is the mental anguish, particularly the intense, crushing anxiety.

I have been thinking a lot about my lifelong struggles with anxiety and the lifelong struggles that so many of my fellow writers have with anxiety. Just for the record, not all writers are headcases - a minority are remarkably sane - but frankly, most of my favorite ones have a bit of the headcase in them.

I see some people deal with serious illness and am amazed at how they just power through and DO.NOT.WORRY.. They do not try to project the future, they do not second guess, they do not doubt...they just decide on an outcome and never mentally sway from that path. How I wish I could be like that.

Instead, I was born with the "what if?" gene. What if they run out of antibiotics that work on my liver infection? What if they find cancer? What if one of my varices ruptures? What if I am approved for transplant but my potential donors can't get vacation time off to be assessed? What if I get a fever when I am supposed to be getting the colonoscopy? What if I die? What if I live? What if, what if, what if, what if, WHAT IF?

Not only is my brain obsessively asking 'what if' all the time like a needle on a skipping record, but it also concocts and projects fully fleshed-out scenes of the various 'what if' scenarios - good and bad. Me being told by the doctor that my PSC has morphed into cancer, me waking up from transplant feeling like I've been reborn, me being counselled by the hospice people as I prepare to die, me on the stage at a TED talk after a successful transplant talking about how creativity saved me...it's all there in turns - the terrifying and the galvanizing, the wretched and the glorious.

Lately, I long to muzzle this overactive 'what if' drive on my brain, but no amount of meditation, gratitude journaling, sessions with spiritual healers, or reflexology seems to be doing the trick. The truth is nothing in my life (and I have tried pretty much everything) has ever changed that aspect of my mind. The 'what if' is as much an innate part of me as my brown hair or my love of the ocean or my fear of knives.

But that 'what if' has a flip side. Without the 'what if' I wouldn't remember my past in terms of scenes and stories and be able to write about it vividly in my memoirs. Without the 'what if' I wouldn't be able to concoct a paranormal romance between a winemaker and a mermaid, as I am doing right now for my first work of fiction. Without the 'what if' no writer would be able to write but because of the 'what if' so many of us writers live with anxiety.

My 'what if' gene is the perfect example of a human paradox; the worst part of me is also the best part of me.

Without 'what if' I would not be waking up every morning with that lead weight of anxiety in my soul, but without my 'what if' I would not have writing in my life as one of my strongest lifelines in these stormy seas.

My reflexologist gave me an interesting idea last week. She said, "how about you try writing down little scenes of your life after a successful transplant?"

I have done that in a little (turquoise) journal - a little snippet per day. I'm surprised at how it is the little things that capture my imagination - not the TED talks as much as being able to volunteer to take Clem's class to the beach, without worrying I may have to bail due to a fever or nausea or a hospitalization, gardening with Franck without needing to rest on the couch, not having to tell my girls I need to head to the hospital again...a normal life - god how I will treasure it if I am lucky enough to get it back.

I am tired of fighting against my essential self. My anxiety, for better or for worse, will probably always be a part of who I am. I am going to invite my 'what-ifitis' on this journey with me, instead of making it stow away in the life-raft. I'll let you know how it goes.

Woo Cannot Fail, It Can Only Be Failed

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.