Image found on http://aquai.tumblr.com/
On Wednesday the 8th of June 2011, I connected with Sasha for the first time since 2009. We made a few attempts at connecting before this. Little things – ‘likes’ on Facebook, a couple of messages, nothing more – but that thin thread that wove us together in the corridors, first at RNS and then at St Vincent’s, was always visible in my mind. Not a day passed that I didn’t think of her, that I didn’t wonder if more could have been done.
We met for the first time in March 2009, in the waiting room, amidst the old people in slippers and dressing gowns taking up all the chairs. I saw Sasha and Michael talking to each other as they walked down the corridor. This stunning girl with olive skin, enormous eyes and long, auburn hair and this pale thin man, agile with his drip pole, waltzing towards us. They laughed as they approached and her teeth shone as she threw back her head. I liked this girl from the outset. I wanted to talk to them, excited for company, but I was apprehensive and protective of Sam. That day was the first time Sam and I saw any people, apart from the nursing staff, who were younger than me. We had been in and out of hospital everyday for two months.
We didn’t go out of our way to make friends with the other patients, mostly because they were old and frail and had nothing in common with Sam, just Leukaemia. We had no desire to compare notes or diagnoses or treatments with other patients. Sam never wanted to acknowledge Leukaemia. We didn’t talk about her condition, or the doctor’s words, or the overwhelming amount of literature they gave us. “You read the stuff,” she said, “and just tell me what I need to know.” I read everything I could get my hands on: every A4 sheet, and every booklet from the Cancer Council, every leaflet in the drug packets that listed possible side effects. I kept them all together with the print outs of her daily blood results and the Centrelink forms until the folder bulged. I even bought sleeves and dividers to try to bring order and control to a life that was falling to pieces.
It was Michael who initiated our first conversation, as we sat in the purple tub chairs under the 1980s style mural painted on the waiting room wall. “So,” he started, “what kind of cancer?” He was so loud and confident that it felt like an invasion of privacy at first. Then I realised that Michael had cancer too. His head was completely bald, his flesh pale, his drip stand loaded with imeds and his loose track pants hanging from his hips.
Sam responded in a quiet, friendly voice that she had ALL Leukaemia.
“Oh, ALL,” he said. “It’s a bugger. Did you get any Centrelink yet?”
I felt uncomfortable but Sam seemed to be enjoying the company of young people and had started to ask Sasha questions. They sat with us, told us their names and Sam and Michael began to exchange stories: how they had been diagnosed, where they lived, their dreams for the future. I watched and listened. These were the first people we had spoken to who faced a similar ordeal. Michael had Acute Myeloid Leukaemia, and he was diagnosed on his 29th birthday. Sasha was 23 and they had just got engaged. Michael had a different protocol to Sam but the same doctor, and he entertained us with impersonations of our haemotologist’s gruff voice and sadistic nature.
We laughed so hard. It was surprising and delightful to see Sam engaged in conversation and smiling. Her whole face lit up. It was the first time I realised how lonely we had become. It’s funny how people turn up in your life just at the right time. It was the right time for us to meet Sasha and Michael and to begin the parallel journey down the path of beating Leukaemia.
The journey continued until August when Sam was transferred to St Vincent’s. Michael was still waiting for his donor to be found. He wasn’t offered much hope because his mum was Lebanese and his father Australian. People of ethnic minority are disproportionately represented on the Australian Bone Marrow Donor Registry. In spite of the lack of hope, Michael was the most positive person I have ever come across. I don’t think he ever stopped believing he’d find a way through; but he lost his battle on October 17, a month after Sam was discharged from hospital. Her transplant had been a success.
With gratitude there is also great grief. I’ve never gotten over the fact that Michael didn’t make it. I’ve never come to terms with the fact that with more donors, more lives could be saved. I’ve never understood why there is so little publicity, so few donor drives and a lack of education surrounding bone marrow transplants. I’ve wanted to tell Michael’s story in the hope that people of ethnic minority would donate stem cells; but to do this I needed to talk to Sasha.
So we talked. We spent two days together huddled in a café filling each other in on all the missing pieces of our parallel lives. We cried, we hugged, we sighed. We agreed that Michael’s story needed to be told. My next plan was to get my facts relating to stem cell donation correct. In the process I’ve made some great discoveries, but also hit many walls. There is a lack of funding, a lack of awareness, a lack of donors, a lack of campaigns and a lack of people prepared to do anything about it. Or so it feels.
Sometimes you just haven’t knocked on the right door yet. So you push through and without warning, the familiar thin thread appeared amongst the bracken and the undergrowth. You would have missed it entirely if you weren’t looking down at your feet. Feeling forlorn and frustrated, seeing no way through, you’d begun to kick at the stones and let the damp soil muddy your toes.
You knew the forest was dark, the foliage dense; but you hadn’t expected the resistance to come from those you were trying to support. You didn’t anticipate the transparent canvas would block your path, prevent you from entering. You didn’t expect the shield that it became; and so when the thread appeared on your path, you did nothing at first.
You desired to hold its coarse grain between your fingers, to follow it, to find where it led; but you’d learned by now that there is some wisdom in being cautious. That very thread may tighten the spring in the canvas, propelling you back down the path from where you came.
So you consider the thread and you imagine the possibilities if this one thread could be worked loose. Perhaps there is still a way through. Perhaps the weaver erred. Perhaps the weft didn’t quite make the loop over the warp at the end of one of the rows. Maybe if you handle this correctly you’ll pry open a small hole, just enough for your finger to poke through.