Clearly, this was a deeply distressing time, although I don’t remember my parents crying or complaining. What I remember is them praying, on their knees, for Rowena to come good again. Sometimes their prayers were answered. Sometimes Rowena would go to bed sick and then wake up the next morning feeling absolutely fine—her old self, once again.
Then, for no clear reason, the illness would return, and soon progressed into what could only be described as a rotating roster of random, baffling, increasingly debilitating symptoms. There was her lack of appetite, her fatigue, but also a problem with her sight. She developed a new habit of bumping into things when she walked. She told Mum and Dad she couldn’t see properly, but then the symptoms would leave, and she would return to normal. We would return to normal. But never for long enough to relax.
My parents took Rowie to many doctors, both local GPs and specialists, who did test after test, yet no one could tell them what was wrong, or why. Rowie was missing more and more of prep. The children in her class sent cards saying, Get well soon. Mothers of Rowena’s friends from school dropped meals on our doorstep and, in the supermarket, people stopped my mother and asked her if there was anything they could do to help. I remember pulling at her skirt impatiently, asking her if we could please go home now.
I get a prickly feeling at the back of my head when I think about this time. I remember the feelings—the seriousness, the panic—but I didn’t yet have language to understand exactly what was happening. Most of what I tell you now is what my family told me, bit by bit, over three decades.
As the months rolled on, Rowena grew so sick, so weak, she could barely walk. Mostly she crawled. She no longer read her prep books, no longer even looked at the pictures. In the TV room, she sat closer and closer to the television, turned her head to the side, saying that she couldn’t see the pictures properly. It was clear there was something wrong with her eyes, but none of the experts were able to diagnose what exactly. She was hospitalised three more times—either for dehydration or observation—but, still, nothing. There were no MRI machines back then; there was no way of seeing far enough into Rowena’s body to know exactly what was going on. Mum and Dad took her from GP to GP, specialist to specialist, each appointment beginning with renewed hope that perhaps this time they might find a way to make her well again.
It came as a blow then, when an eminent paediatrician from a Melbourne hospital, a man my mother describes as ‘kind and gentle’, suggested that, with no medical explanation as to what was happening inside Rowena, perhaps it was time to refer her to a child psychiatrist.
This next part my mother can’t talk about without crying, and I struggle too. My parents knew, in their hearts, that this was the wrong conclusion, and yet, with Rowena’s body wasting away in front of their eyes, they were now beyond desperate, and this doctor was an expert, and by this stage they were willing to try absolutely anything.
The psychiatrist tried his very best—my mum has always made this clear. I can’t explain why but, every time she says that, I feel a surge of rage with nowhere to put it. I want someone to blame. She says that there is no one to blame.
The psychiatrist—having been assured that nothing could be found medically wrong with Rowena—was shocked by her physical condition, but apparently impressed with her intelligence and courage. He appeared confident he could help. Although my parents had their doubts when he proposed to them the popular 1970s theory that perhaps Rowena was finding it hard to get attention—being the fourth child and all—they took it on for consideration. It might be an idea to try ignoring her, said the psychiatrist. Give her less attention. Maybe do activities with the rest of the children that she might want to take part in, so as to give her a chance to will herself into getting better. Perhaps when she saw the rest of us having a good time without her, she would come to her senses, get over herself, and join us.
Except she couldn’t see us properly. That’s what the doctors weren’t able to pick up in their tests; when she told them she couldn’t see, she meant it. Later it would make sense—her peripheral vision was still working; it was her central vision that was the problem. Perhaps this was why they thought she was making it up.
Yet, for those who knew Rowie, it was difficult to imagine she would ever make up something like that. She was as direct and true as they come, sometimes to a fault. Without meaning any offence at all, she once asked a woman with a long chin, ‘Excuse me, are you a witch?’
Soon, there was no longer any question of whether Rowena’s illness was mental or physical. It was finally acknowledged by all the doctors that Rowena’s illness, although mysterious, was most definitely not psychological. By now, six months after her symptoms began, she no longer went to school. She required full-time care. My parents widened their search for answers, began making specialist appointments outside Melbourne, going with any lead they could find. By now her movement was severely limited, and then, one terrible day, it stopped altogether. Her whole body became stiff, like wood.
And this was the day she was finally admitted to the Intensive Care Unit
