This month, I’m going to be blogging a lot about living with a pebble as a contributing writer for the Wego Health Activist Writer’s Month Challenge. Every day in April, Wego is providing a talk prompt to get us writing and talking about health. I’ll still be posting my usual assortment of content too, so there will be plenty of photos of kids crafts, TAST stitches, yummy eats, and of course our beloved woods intermingled with more of my thoughts on living with chronic invisible illnesses than I usually share on this space.
Why am I doing this? Because it is important. Because, on a personal front, living with chronic invisible illness is something I try to do with as much grace as I can muster, every single day. And because since I have started talking openly about living with chronic illness, a great number of people have sidled up to me and whispered “Me, too. I am so glad I am not alone.”
Today’s challenge is to create a virtual time capsule with a series of objects that represent me and my health story, to be opened in 2112. A little exercise in self-definition, if you will. I’ve never been a big fan of time capsules, despite being a lover of history, in part because they feel contrived and in part because the real history is the one we are most often not comfortable sharing.
My own time capsule, if it were to be truly representative of the threads in my life from the beginning of me to the present, would have to start with a story.
The Monster At The End Of This Book, to be precise, since some of my earliest memories involve sitting on my father’s knee listening to him read it to me.
The time capsule would have to include a moose, too, both for the taxidermied moose that terrified me as a child and for the nickname that stuck around for years as a result.
A can of purple pop is the next thing that comes to mind, along with a box of Kleenex. The pop was, from what I’ve been told, my absolute favourite drink the summer we drove across Canada in a little tiny car stuffed to the gills with camping gear and camera gear and a little girl of three with a penchant for white dresses which became white dresses with purple splotches down the front.
As for the Kleenex, did you know that if you hold your hand out the window while driving along the TransCanada Highway, you can feel the wind? And if you hold a Kleenex out the window, you can see it flap and flutter and flutter and flap until —fffwup!–the Kleenex is no longer in your hand, but is instead merrily flying away behind the car for a moment before it floats oh-so-slowly to the ground? And did you know that an entire box of Kleenexes will make exactly the same fffwup! sound each and every time you hold one out the window? And did you know that the police will actually put on their lights and sirens and make your father pull over to the side of the road and explain why, exactly, there is a happy little trail of fffwuped Kleenexes littering the highway for at least a zillion kilometers or so? Yeah. Sorry about that, Dad.
I remember very little about that trip, but I do remember the moose, and sitting in what used to be the back seat but was now a cooler with a pillow on it, and the chipmunks eating peanuts from their perch on top of my head, and the bear who wanted my Cheerios, and the feeling of the Kleenexes in my fingers and the happy glee of waiting for the fffwup!
The school-aged stage of my life would have to start with another book: Owls In The Family. A piece of burnt wood, too, for the rich smoky smell of the fireplace in front of which I spent many happy hours listening to Dad read out loud, chapter by chapter.
A bike tire would be a good addition, too. We biked together a lot as a family, all over the city. We would bike through the Experimental Farm, down dirt roads and past fields of hay. We biked around Dow’s Lake and would often stop on a little promontory to have a picnic. We biked downtown, to see the fireworks on Canada Day or to get ice cream at Lois & Frima’s. We biked along the canal, on twisty little paths beside the water where a fat man crashed into me one day, and where Mom fell and broke her collarbone and had the paramedic move a “rock” out from under her back where she lay on the grass, only to have the man’s face turn gray when he pulled out a gun instead of a rock — my brother’s toy gun that Mom had tucked into her waistband when he had fallen asleep in the bike carrier.
Some sparkly sequins would come next, for all the dance classes, pink, of course — in memory of a particularly memorable hot pink spandex and sequin costume. A raquetball raquet, too, for all the years we spent at the fitness club as a family. And a little canoe, both for the oh-so-patient swimming instructor who finally taught me how to conquer my fear of swimming and then dumped me out of a canoe, and for the many hours my family spent paddling in lakes and rivers and at a friend’s island cottage, and for the time my sister and I discovered to our chagrin just how powerful a headwind can be when you are on the wrong end of an island, by yourselves, in a canoe.
High school’s memory would be a whole library of books if I had room, but if not, a single volume by Brian Doyle in memory of all the hours I spent in his classroom being befuddled by his marking scheme and learning to find my voice. It would also include a single piece of my own writing from those days, which he handed back without a grade. I had struggled to please him all year, listening to his comments, poring over the changes he made to my writing, and blushing furiously when he caught me giving less than 100% to an assignment and made me do another. He marked on a scale of 1 to 7, and I hadn’t managed anything higher than a 6. This particular assignment came about midway through the year, my second as his student, and I remember being terribly upset that he hadn’t graded it.
When I confronted him about the ungraded assignment, he handed it right back and told me that if I read it, really read it, I would know what my grade was. Being rather lacking in self-confidence, I re-read the assignment, thinking the flaws must be so terribly awfully obvious… but I couldn’t see them. I had no idea what was wrong with the piece. And that’s when he told me that there was nothing wrong with it. I had found my voice. I was a writter that day, and as long as I kept writing like that, as long as I kept putting every bit of my talent behind my words without holding anything back, then it didn’t matter what number he scrawled on the page, because that number, after all, was nothing more than one man’s opinion. I started to believe in myself that day. Just a seed of belief, but it had been planted.
High school would also have to be represented by a whole stack of pictures of friends, of my siblings, and of The Man We Call Dad, who I met when I was 14 and who kissed me for the first time one April four years later.
My twenties would have to be an entire jumble of things. A robot, for my years working at the science museum. A bit of hay, for the hot summer days working at the Experimental Farm. A paua shell from my trips to New Zealand to visit a family I missed more than words, not that I would admit it. A human skull, for the physical anthropology prof who embodied the idea of seeing a need and filling it. A human spine, for the other anthropology prof who was my first real contact with someone living with chronic illness who was very, very vocal about it. A first apartment. A first roommate. A first apartment without a roomate. A first apartment with a boyfriend living in it. A first couch. A first car. A lovely summer walk hand in hand, lips finding lips, under the twinkle lights in the gingko trees.
And a pebble.
At the end of my twenties, after what had been a relatively happy and active childhood living with congenital scoliosis and thinking it was perfectly ordinary to have to go to the children’s hospital regularly for checkups and x-rays and things, I found myself going to the grown-up hospital for ER visits and x-rays and CT scans and bone scans and MRIs and things and finding it very far from ordinary. My time capsule from this period would include knee braces and a cane, pain medications and antidepressants, surgical procedures and physical therapy, question marks and scary diseases bandied about as possibilities. And fear. Lots and lots of fear.
My pebble had come home to stay, and life would never be the same.
My early thirties saw a miscarriage, the birth of my son, the birth of my daughter, and the last day I can remember where I was not in any pain. It was November of 2002, and I was pregnant with my daughter, and I woke up from what had been 4 months of feeling light and exhuberant and full of energy to find that my body felt heavy again. It was back, whatever the mysterious it was that the medical world still hadn’t figured out. I had a pebble again, and it was powerfully heavy.
Every day of my life since then could be represented by that pebble. Every day of my life since that November morning 10 years ago, my body has been riddled with pain and stiffness and coldness and bone crushing fatigue and foggy thoughts and the terrible torture of constant pins and needles. But.
I will not permit my life to be defined by my pebble. It is always there, but it is not me. My pebble most definitively doesnot have the power to define me. I will not let it have that power over me.
So the last thing in my time capsule is the endless expanse of clear blue sky that is always over all of us, giving us the air we breathe and the sunshine we crave and the feeling of freedom and of being part of something bigger than me.
I am the sky, and the wind, and the sunshine through the trees. I can be a mother and a writer and a woman of magic and mystery. I am not alone. We are not alone. None of us on this planet–whether we have a pebble or not–none of us are alone. We are connected, by the simple fact that we can, all of us, look up and see the sky and marvel at its everchanging nature. We, too, can change, just as readily as the sky. And like the sky, we may be tied to the earth, but we are free to live, and hope, and dream.
I am not my pebble, and my pebble isn’t me.