The German specialist was the head of the hospital and an extremely busy woman. Mum and Dad had sat in her small office, cluttered with papers. She’d recommended a medication called DITPA (3,5-diiodothyropropionic acid). ‘If you can find them, get hold of these pills. It’s the best chance there is at the moment of making a difference,’ she’d said.
The pills had originally been made by a pharmaceutical company to alleviate congenital heart conditions in adults but the trials hadn’t been successful. There was no proof that DITPA would help the boys. In fact, it had never been trialled on children. Dov and Lev would be the first. But the science made sense, and the German specialist was meant to be the best of the best.
Dror had explained to me that DITPA, which mimics the functioning of thyroxin, was able to get through the blood–brain barrier without needing the defective MCT8 protein to carry it. So, the DITPA pills could potentially deliver thyroxin, T3, into the brain and promote healthy neuronal development. ‘They’re not receiving T3 in their brain because the protein MCT8 isn’t working properly,’ Dror had reminded me.They were producing T3, however, so this also meant that Dov and Lev had too much T3 floating in their blood, which speeded up their metabolism and could damage their vital organs. The hope was that DITPA would not only help develop their brains but also stabilise the hormonal imbalance.
My father had made a note of the strange acronym.
But DITPA had been nowhere to be found. Dad had searched for months until, at an interstate conference where he was giving the keynote speech, he had unintentionally crossed paths with a pharmaceutical executive. The man had been unable to help but had known someone who might. Through persistence Dad had finally arrived at the CEO of a small company in the US, the only one to have ever made DITPA. But the company had not been faring well. During a teleconference, amid letting go of staff and packing up their laboratories, they had told Dad that it was impossible for them to supply the drug. Panicking that the pills would end up in a pharmaceutical dumpster, my father had done a deal and bought a large supply, several years’ worth of treatment, without knowing if it would work or not. For my father, money meant nothing if it could not save his grandchildren, and he would have spent every cent. I was swept along with Dad and Dror’s enthusiasm, excited at the prospect that DITPA could help.
Tens of thousands of DITPA pills arrived, and under medical supervision we administered the prescribed dosages to Dov and Lev.With careful scrutiny from a Chicago researcher, as well as a formidable team of doctors from the US and Australia, brought together by my father and Dror, Dov and Lev were the first children in the world to take the pills. Later, as word spread about its possible benefits, there would be many more.
We gave them the medicine three times a day, at 6.30 am, 2.30 pm and 11.30 pm. I was responsible for the nightly dose, Dror for the morning and Rachel for the afternoon. Before we began, we started to film the boys regularly so we could document any changes to their physical or cognitive condition. We also arranged an independent assessor to milestone any progress. Debbie, their physio, felt too compromised in her attachment to Dov and Lev to do the job dispassionately. I was happy she felt so close to them. As far as I was concerned, the more people who took ownership of their progress, the better chance we had.
The bedroom was dark and warm with the soft sighs of their breathing. I rested the plate on the arm of the couch and went over to their cots. Which one should I pick up first tonight?
I liked to be fair, never favouring one over the other, giving equal love and attention, but sometimes my memory failed me. Lev was moving in his sleep. He was lying on his belly, his head to the side with his dummy firmly in his mouth. He had wriggled out of his blanket and I felt a pang of sadness that, even though he was two and a half years old, he couldn’t cover himself again.
I bent over to pick him up, cradled him in my arms and moved to the couch. I took out his dummy and fed him the spoon in a smooth, well-practised movement. He grimaced at the taste and I gave him two more heaped spoons of apple puree to wash it all down. He swallowed and I returned his dummy, quickly putting him back in his cot, covers snugly over his shoulders.
Now it was Dov’s turn. When I woke him, Dov always responded to my touch with a start. I kissed him on the nose and whispered, ‘Medicine time,’ into his ear to let him know it was just me doing our nightly routine. He looked into my eyes in the dim light with such sweetness.
‘You’re like maple syrup,’ I said, kissing him all over. He smiled.
Next morning I scanned my electronic key at the Voiceless front gate and pushed open the wide wooden door of the office courtyard. Past the grey pebbles, through the big glass door, hello to the staff and into my office. I put the coffee cup down beside me and turned on my computer. The machine whirred into action. Peace and quiet. I started writing up the notes I had made on the Greens’ animal welfare policy to send through to Lee Rhiannon, representing the Greens on the NSW Legislative Council.
Suddenly I heard Dror’s distinctive accent, part Israeli, part American, booming from upstairs where he was working. Two words that were explicitly taboo for us to use publicly—‘stem cells’—were audible to everyone in the office. My father and Dror had started investigating two stem-cell treatment options: mesenchymal stem cells (MSC) and induced pluripotent stem cells (iPS).The former would infuse adult stem cells derived from cord blood into Dov and Lev’s veins in order to reduce possible inflammation and support endogenous neuronal growth. The latter would first develop neurons from the boys’ skin tissue with a corrected mutation that would then be delivered into the boys’ brains for the repair and new growth of neurons.
No one knew about our research yet; it was one of the few private things we had left.
Panicking, I jumped up from my chair, scooting my overweight body clumsily around the large desk.
‘Yes, I received the paper,’ said Dror. ‘Not the 2010 one about the analogous cells in brain damage? I recall, from the symposium, the adult neural stem cells . . . Interesting. Do you think . . . ?’
I assumed Dror was talking to a researcher in the US. I tapped him on the shoulder and glared at him. To further clarify, I waved my finger at him as I would to a naughty child. ‘No!’ I mouthed. He nodded, expressionless, and went back to his call.
Fury washed through me, stiffening my joints as I tried to walk calmly back down the stairs to my desk. The clip-clop of my heels echoed. I plonked myself back down at my desk with a grunt. Not only do I have no privacy at home, I have none at work either, I seethed silently. I felt as if my own children, house and now my workplace, were public property. Nannies, therapists, researchers, doctors all came between me and my boys. Of course I wanted their help but I constantly had to hide my true self at home and in the office. My heartache for Dov and Lev was of the most private, personal nature. Whenever my boys were referred to as disabled, handicapped, with mental retardation or as third parties or projects, my pain became dangerously visible.
The phone rang. The person I was meeting had arrived. I breathed deeply, applied some lip gloss and clip-clopped to the boardroom.
‘Hi, how are you?’ I asked. ‘Coffee? Tea? Water?’
As I talked, I began to hear myself as if I were hovering just above where we sat. There they were, zombie Ondine and an academic sitting side by side, discussing factory farming. They talked about how the academic research into public attitudes to farm animals was proceeding, funded by a Voiceless grant.
‘This research could be a real breakthrough,’ the academic said. I refocused and nodded ferociously. She was right. Voiceless needed data to substantiate our claims that factory-farming industries were hidden under a veil of secrecy. We knew anecdotally that most Australians were unaware of the systems used to create pork, bacon, chicken and eggs, but no statistical information was available to back that up. Most people I had spoken to had no idea that female pigs were artificially impregnated and kept for their whole lives in steel cells known as ‘sow
stalls’ where they couldn’t take a step forward or backwards. Their piglets suckled while lying on a concrete and steel floor, reaching their mother’s teat through steel bars. These animals never went outdoors, except on the way to the slaughterhouse. Few people knew that piglets’ tails were cut off and teeth clipped, and the males’ balls removed, without any anaesthetic or pain relief. I thought of my responsibility to these animals, and the weight of it was heavy on my shoulders.
I tried to plan Voiceless’s strategies using marketing principles. First, differentiate the target audience and know them in detail. Second, hone the message to your audience. We needed to find out what Australians knew about factory farming and how they felt about it, so we could target those most open to our message. Unlike many other social or environmental issues, such as pollution, where outcomes can affect your or your children’s health, there are few obvious self-interest benefits in advocating for animals.
I knew I should be excited about contributing to this research, so I smiled and even said, ‘How exciting.’ But my anger bubbled up.
I had told Dror I needed privacy.Work was to be kept separate. My staff must have confidence in me to lead the organisation, not view me through a lens of pity. I feared they would judge me for continuing as managing director of Voiceless rather than being at home with the kids or, conversely, for not working hard enough at Voiceless. Voiceless was meant to keep me sane. If I couldn’t have a perfect IKEA-catalogue life complete with able-bodied kids baking cupcakes, then I could at least pull off being a professional.
At last the meeting ended and I sat back down at my desk and stared blankly at my computer. There was no doubt I still cared deeply about the situation of factory-farmed animals. But I had to be honest. My heart was full of passion and pain, but not for animals, for my children.
Despite my clear boundaries, everywhere I turned it seemed that people who weren’t even relations or family friends knew intimate details of Dov and Lev’s condition and treatment. Details I had not shared. My parents had a huge circle of contacts and easily merged the personal and professional. On numerous occasions I’d begged, pleaded and bullied them to keep information about Dov and Lev to our inner circle, my ‘circle of trust’. I suppose sharing with others helped them in their grief. But it was making my life a nightmare.
A week later, at a crowded art-world cocktail party, champagne flute in hand, a colleague of my mother’s asked about the new medical research we were planning to support. She referred to the specific research institute my father and Dror had visited.
‘It sounds very encouraging,’ she had said among a crowd of strangers. ‘You must be excited.’
I struggled for words. Nobody, nobody, apart from our immediate family, was supposed to know about the stem-cell research.
‘Well, it’s just pie in the sky at the moment,’ I attempted to reply casually. ‘I try not to think too much about it.’
I sculled my red wine and left. I knew if I confronted my mother straightaway we would fight; she would feel victimised and I would apologise.
The following day I decided to channel my anger into a request for advice. I sat my father down in the office’s shared meeting space and closed the heavy door. We sipped our coffees and caught up on Voiceless housekeeping. After a few minutes I shared my story from the night before, asking him, my voice quivering with emotion, ‘How can I keep my privacy?’ His face fell. I knew how he hated upsetting me. ‘Sorry, Dad, I know you and Mum don’t do it to hurt me, but I don’t want everyone to know what’s happening with Dov and Lev. I want to share things when and with whom I choose. I wish I didn’t but I need boundaries. I can’t breathe like this.’
Tears came to my eyes. At least he couldn’t complain that I bottled things up any more. Here it was, the scream he’d wanted me to make in the park when I was ten. I was twenty-five years late. ‘You, Mum, Dror,’ I continued, ‘talk and talk and talk about them.’ I was mad that their words were out of my control and their perspective so different to mine. If I had to share Dov and Lev with the outside world, I wanted it to be on my terms, in my way, and ideally in writing. Later I would get that chance.
‘The only way I’ve been able to find out all this medical information is by talking to people,’ Dad said carefully. ‘I’ve managed to track down the head of the largest paediatric hospital in America because I’ve been talking to people. Remember, that’s how we got their diagnosis. And the DITPA.’
‘You have a point,’ I said, exhaling. I smiled at him. ‘I do appreciate it. I do. But things have changed. We don’t need anyone to give us contacts any more.’
‘Well, that’s not completely true,’ he replied. ‘Dror and I are speaking to people at the cutting edge of medicine. We still need contacts, but I will try, I promise, to keep your privacy. I’ll speak to Mum, too. The last thing I want is for you to be anxious.’
‘Thanks, Dad,’ I said, and reached across the coffee table to squeeze his hand.
EIGHTEEN
Underwater with my eyes open, I hear only my heartbeat and see blurry blue. It has always been my true definition of peace. As a child I would spend half the summer at the bottom of our pool. Once I got my scuba licence, I never wanted to surface. The freedom felt all-encompassing: I was no longer me, but an ocean creature. Perhaps this quality was given to me with my name, Ondine, the pre-Disney water sprite or ‘little mermaid’ in old European mythology. My mother has confessed that as a stubborn toddler I was so in love with the water that I would run towards the ocean and, unlike Emile, no argument or threat would stop me, only a firm smack.
I was in Thailand for Louise’s fortieth birthday. Four women, six days, one island: perfect. This was just what I needed—no children, no therapists, just relaxation.
But lying on the poolside chairs, piña colada in hand, I didn’t feel like talking or reading magazines. I had intimated to Louise at breakfast that I was feeling down. She had laughed it off with a wink and ‘nothing that a few drinks won’t fix’ before heading off for a wax. I had laughed too. Inside, though, I took it as a sign she didn’t care. But I knew she cared. Thought I knew. Sure she did. Didn’t she? Probably my fault. Didn’t communicate clearly enough. Anyway, I didn’t want to spoil Louise’s break with a big deep and meaningful. She worked hard. Deserved a break.
The resort looked like an island travel catalogue. Come on, Ondine, try to bloody enjoy yourself for a minute, I told myself. It didn’t work. I couldn’t smile. I put on my headphones and hummed quietly to David Gray’s ‘Breathe’. A tear rolled out of the corner of my eye. I licked the saltiness off my top lip.
Sad, I thought. That’s what I feel. An ocean full of salty sadness.
‘I’m going for a swim at the beach,’ I announced, getting up quickly before Louise or her law-firm friends joined me. I walked down the steps that connected the pool to the sand and veered left, out of sight. I dumped my sarong on the beach and waded out.
The water was shallow but I started swimming breaststroke, turning back every so often, grateful to see the Thai beach, speckled with tourists and Thai masseurs waiting for customers, growing smaller behind me. ‘Mmm,’ I heard myself say as I was wrapped in the blanket of warm water. I couldn’t remember the last time I’d felt quietly at peace in my own wet skin. I stopped swimming and stood, curling my toes into the sand, thankful the water was still shallow. I was far from shore.
Just over the stretch of beach I could make out our resort pool, turquoise and shaped like a snake, and the figures of my friends, happily drunk, sunbathing and reading vampire books.
They wanted to escape and let loose. I wanted to immerse myself in my thoughts, to find answers and to connect to the wounded self lying beneath my skin.
I gazed at the horizon; the ocean was dark blue. Fishermen, working in pairs, pulled knotted rope nets onto small wooden boats. When I waded out I had spotted many beige-coloured fish the size of my hand, and expected to see hundreds of them flapping in the nets, struggling for their
last breaths. But the nets were devoid of fish or other sea creatures. What were they fishing for? I had never been to Thailand before and should have been more curious. But I didn’t care.
‘What are you feeling? What is going on?’ asked the sea.
‘I don’t know,’ a whiny voice replied aloud. I looked around me; no one could hear.
‘Come on, what’s going on, Ondine?’ I spoke my name decisively.
My arms stopped their circling through the warm water and I stood still.
‘I’m so sad. So very sad. My heart is broken. Literally.’
I suddenly realised that this old cliché could be true. I put my hand to my chest and tried to locate my heart and the innermost searing pain I had been experiencing. Not the stuff of heart attacks, but painful nonetheless.
I dived underwater and resurfaced.
‘I’m scared!’ I confessed, on a roll now.
‘Panicked. In a state of complete and utter . . . yes, terror.’ That word was perfect. ‘I am in a state of terror,’ I repeated for dramatic purposes.
‘I have no idea what to do.’
‘What are you scared about?’ the sea asked.
‘It’s too hard to say.’ I started crying and felt tears running down my already wet cheeks, salt on salt. My gentle whimpering turned into an uncomfortable sob. Then my whole body convulsed, sinuses blocked, and I couldn’t breathe through my nose.
I’ve gone mad! I thought.
I swam and duck-dived in circles to calm myself, then found my feet on another sandbank.
Let’s make a list. My pragmatic mind sprang into action. Start with number one.
The Miracle of Love Page 16