I don’t know if I was there that day. I don’t know if I remember. What I do know is that, as I write this all down, I am aware of a cold feeling in my chest, and the sense of a voice in my head, a voice telling me to stop talking now, telling me that talking about these things is useless, and silly; that I should stop making such a fuss, that it was hard for everyone and by writing about it I’m only making it harder. And then I go numb. This seems to happen whenever I try to talk about this time in our life: I hear the voice, and then I feel this numb feeling, like I’m floating outside myself. Like I’m not quite here. Like I am making this up. I wish I was.
I am told that this reaction is quite normal. Trauma leaves you with holes in your memory. Everything that isn’t urgent just goes. All these stories are stories that have been told to me. I try so hard to remember on my own, but I can’t. I would have noticed when she stopped running and started crawling instead, wouldn’t I? I was with her. Someone must have explained to me why we were no longer sharing a room—why Rowie was no longer there when I went to sleep or woke up. But I can’t remember—not with pictures. It is my body that remembers these things for me. By the prickling in my head and the cold in my chest, the ache in my stomach and the wet on my cheeks, it’s clear: I remember more than I can say.
I used to wish that someone could take me back there for a day, so I could fill in all the blanks. Then I wouldn’t have to pain my family by asking them all the time. It’s too hard to ask, and keep asking. I have asked too much already, I’m sure of it. But the compulsion remains: I must know more. And when I ask, when they fill in the blanks for me, I do feel different: more knitted together somehow. Less fractured. More whole.
So here is one of the things my mother told me: that when Rowena arrived at the hospital this time, was brought into the emergency department, the doctors now did a new test, one which revealed that Rowena had an extremely rare disease with an unusual name. A disease so rare that only a few thousand people in the world have ever had it. It affected her spinal cord and there was no known cause or cure. The reason she couldn’t breathe is because of where it hit her on her spinal cord—right behind her neck. What they now knew was that the myelin around Rowena’s spine and behind the optic nerve had disintegrated, rendering her without central vision. The simplest explanation was that she had a very rare form of multiple sclerosis. She was legally blind. She would never be able to walk again. Never be able to breathe again on her own; not without her machine. She could no longer feel anything from the neck down, although she could still feel touch on her face. She could feel kisses. She could give them too. If she had been diagnosed sooner, there is a chance the disease might possibly have been halted—although without MRIs, and with only rudimentary CAT scans, how could they have seen what was going on in her spinal cord? They could not have. At this late stage, my parents were told that unfortunately, there was nothing they could do to save her. Rowena did not have long to live.
For most of my childhood and well into my adulthood, I had no idea Rowena’s disease even had a name. It was explained to me as some sort of childhood multiple sclerosis which, at three, was the biggest word I’d ever heard. I would repeat it in my head over and over, and whenever anyone from school or church asked us why Rowena was in hospital—which was many times a day: by now, everyone in the Sandringham parish and every family at Sacred Heart Primary School knew that Rowena was in the hospital, and she was dying—I would burst out with, ‘She’s got the multi-plus skleeosis.’ I loved having a job to do, and saying those words was my job. Mum would pat my head and nod and say, ‘That’s right.’ And then the adults would mumble some more, and I would try to work out what they were saying.
When the weeks stretched into months, and Rowie was still with us, Mum and Dad found a routine that worked: Mum visited the hospital during the day, often with me in tow, and Dad visited at night, after work, and on the weekend we all dressed up in our Sunday best for family time at the hospital. During school holidays our family spent as much time together with Rowie at the hospital as we were allowed.
As the months stretched into a year and then two, Rowena kept going. Much later, one of her neurologists told me that she set a record for the longest time any child has ever lived in the intensive care ward at the Royal Children’s Hospital. Mum says the nurses absolutely adored her. Because she was on a respirator, she was never on her own. She always had a nurse attending to her, either one on one, or one between two, to keep her company and make sure she could call out if she needed anything. From all accounts, she was cheeky, and funny, and often talked back. Mum says Rowena also had a photographic memory. She would often surprise Mum by recalling, in great detail, things that had happened years before. Despite her incredible limitations, from what I remember, and from
