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.