Photograph courtesy of Tracey Berry. Find more photographs like these here and follow her on Instragram @traceaberry
Lately I’ve been wondering, why does my story matter? While pondering this thought I received an invitation to attend the Memoir Club for Readers and Writers at Randwick Literary Institute. It was from my writing teacher Beth Yahp who ran the master course I took a few years ago. I was eager to attend.
I expected a modern day library filled with books and a meeting room. Yet apart from a vintage collection of books locked in a cabinet and some ancient literary memorabilia I discovered that this was not a library at all. It was a place where people came to discuss words, their value and why stories should be told.
As I listened to the speakers my arguments against myself as a writer rolled in my head. My chest pounded as I hung on the literary prowess of every person in the room. The conversations were delectable and though I am usually a girl of many words, I was silent. The sea around me rose and I hung on to my iPad like a lifebuoy. I delighted in their stories and the finesse with which they quoted other authors. I watched them nod in acquiescence as if everyone knew Joan Didion, Vivian Gornick and Toni Morrison. On my way home I got lost. “Why does my story matter?” I asked myself out loud. I didn’t care that it was now late or which way my car was going. I just wanted to know if my story mattered and why?
I didn’t start writing to get attention. I wanted to drive attention away. I wanted to silence the phone long enough to work out how my daughter could suddenly be dying of a life threatening illness. I wanted to silence my own thoughts long enough to make sense of why they were taking her siblings’ blood and sending it off to a laboratory to see if their DNA was a match. I wanted to stop the world from talking and my fear from swallowing me up. I wrote to tell my family, my friends and anyone that cared the little bits I knew. It seemed to me I knew nothing anymore and so somehow my own sense of understanding was pounded out on the pages of my morning journal. Slowly the stories formed, were reworked and made more palatable and posted on my blog in such a way that I hoped no one would think I’d lost my mind completely, but true enough to know that their support, their prayers, their practical help was desperately needed.
Help came. It came in more ways than I could ever dream it would. People gathered. They fed us, they prayed, they washed our car, they walked our dog, they even rebuilt Sam’s room. Through it all I wrote. I made new discoveries. Terrible discoveries! I watched people die. I held my daughter firm when every six weeks they wound that corkscrew deep in her vertebra to aspire enough bone marrow through the syringe. I told her to breathe, that it would be okay, that she was nearly through it, that answers would come. I had no idea really if she would be okay of if answers would come.
I didn’t know that her only hope of survival was finding a donor on the world wide registry. I didn’t know that matches are rare. I didn’t know that it was easy for people to donate stem cells and slowly the understanding grew that most people shared the same fear of joining the registry. Perhaps like me too many people have seen “Seven Pounds” and Hollywood has frightened the entire global population against donating bone marrow to save people’s lives.
After months of treatment, high risk protocols and a loss of hope, a match was finally found. We were the fortunate ones who got good news. The dates were booked and the transplant took place. She pulled through.
Maybe our story doesn’t matter anymore? Life goes on and slowly our daughter recovers from the plethora of side effects that follow a bone marrow transplant. Does it matter anymore that I write about this? Is it easier just to get on with your life, to celebrate each day?
Last weekend Sam turned 25 years old. It is more than four years since that horrendous day of diagnosis. For her birthday we bought her a bike. She was elated and ready to jump on in thongs. “Please change into your sandshoes,” I begged, looking at her purple toes and her thin papery skin. She obliged me and put on her helmet as well. She wobbled at first when she mounted. My heart skipped a beat. I wanted to hold on to the seat and not let go. I watched in trepidation, terrified she would tumble off and fall.
Instantly I was back in the grassy park with the never ending hill and she was five. Strangely at five she seemed so much stronger than today. I heard her voice in my memory, “Promise you won’t let go until I’m ready?” she asked. “I promise.” I said. So it began, “you pedal and I will run behind you, when you get your balance, I’ll let go.” I remember that day like yesterday. The wind trailing through her blonde locks as I tried to keep up until she was confident to make it the rest of the way on her own.
That’s all that really matters to parents, isn’t it? That we can hold them close until they can make it alone? Today Sam makes it alone. She finished her degree, she is married, she dreams of a future without pain and for a full recovery. For us life goes on but we are completely changed.
Why does our story matter? I think it matters because you, the reader may be the only match for someone like my daughter. They may be waiting like we were, praying every day that a donor might be found. You might be the one who donates a tablespoon of blood that goes to the laboratory that matches a patient somewhere across the globe. It may inconvenience you to donate bone marrow but it’s easier than you think and someone else’s life may depend on it.
If you think our story matters, please vote for my blog by clicking the button in the sidebar or click here to go straight to the survey. Maybe if people knew, more lives would be saved.