Stubborn Seed of Hope

by Falkner, Brian;

  I didn’t go to uni. I put off my course for a year. Matty needs full-time care and although there are government agencies that can supply help, I couldn’t bear that.

  Mum couldn’t afford a computer for him, but I found Grandad’s old typewriter in a box in the garage. Matthew loves the feel of it. The sound of the keys hitting the paper.

  He says that the novel will be what is left of him, when he is gone. I hate the way he says ‘gone’, as if he were going on a trip. But I am glad he doesn’t use the ‘D’ word.

  I don’t think I could handle that. Not from him.

  I remember.

  The soup is mushroom. His favourite. Not his favourite food, that is still pizza, but he can’t eat that anymore. I take the bowl upstairs and he smiles weakly at me from the bed.

  His manuscript lies on the table beside him. Still uncompleted. And yet so tantalisingly close. But he works so slowly now, just an hour a day, sometimes less.

  He sees me looking at the manuscript and says, ‘I want you to finish it, Janey, if I can’t.’

  The work is no longer a secret, but the kettle has not yet boiled.

  I shake my head and say, ‘You’ll finish it yourself, Matty, I won’t have to.’

  But what I really mean is that I can’t. I have read it, and I know I couldn’t lift a pencil to it.

  The windows are open and they welcome inside a cool but gentle breeze. The lace curtains sigh and let it in.

  Matty is thirteen. Lucky, lucky thirteen. He was not supposed to make it this far.

  But there was a change of doctor; an experimental brain surgery; and a crowdfunding project.

  Matthew is alive: oh God, I can barely write the words. Matthew is alive!

  How long for? We have no way of knowing. Cancer is an aggressive weed with deep roots. It can hide for years, and just when you think it is gone forever the first serpentine shoot slithers out of the soil.

  Matthew is alive, and if we are lucky, we will get to see him grow to be a man, have a full life.

  But there’s been a price to pay.

  The left side of his body is weak. Physiotherapy will eventually overcome that, I know. And it will help him disguise the slowness and slight slur of his speech.

  But there are things that physiotherapy cannot fix.

  It is as if, when they took his cancer, they took something else.

  Matthew reads through the novel he was so close to finishing and he looks at me with those large, expressive eyes.

  ‘I think it’s really good, Janey,’ he says. ‘I know I wrote it, but I don’t really understand it.’

  ‘That’s okay, Matty,’ I say. I put the manuscript back in its cardboard box and put it away, high on a shelf in his closet.

  I hug Matty tightly. He squirms, like any thirteen-year-old brother.

  And that is enough.

  SUNDAY

  Grant was grinning at me, propped up on the bed with pillows, when I arrived with our mother at the start of visiting hours on Sunday afternoon.

  In the beginning we’d gone to see him every day. Then after a few months it became twice a week. Then every weekend, usually on a Sunday.

  ‘Hello, Grant,’ Mum said. ‘It’s your mother, and Benny’s here, too.’

  Grant’s eyes did not move to follow her as she edged around to the side of the bed.

  ‘He loves our visits,’ she said. ‘Look how it makes him smile.’

  Our visits didn’t make Grant smile. Nothing made him smile; nothing made Grant do anything. Nothing except the effects of the massive stroke he had after his motorbike accident. The fixed grin on his face was permanent: something to do with the way the stroke had affected the muscles in his face. But you couldn’t tell Mum that. I mean, she knew. She’d sat in on the same doctor’s meetings I had. But she liked to think that he was smiling, that somewhere inside he was happy. And it would upset her to be reminded of the truth.

  He’d been shaved. His face had that fresh clean look. It made him look younger, maybe fifteen or sixteen instead of twenty. They shaved him about three times a week. Always on a Sunday morning because they knew that we’d be visiting in the afternoon. The nurses here were good like that. They really cared about him.

  At least one or two of the younger ones would probably have thought about dating him, if it hadn’t been for the stroke. Grant always had the looks in the family.

  Dad, when he was alive, always said that God had divided up the genes. Grant got the looks and I got the brains.

  I guess he was right. I was only in Year 12, but in my spare time I was doing a couple of university courses. Smashing all my exams, too. Things that seemed complex to other people just seemed simple to me. I don’t know why.

  Grant was showing off for me when he had his accident. I didn’t ask him to do it, and I know it wasn’t my fault, but that doesn’t stop the feeling of guilt. If I hadn’t been there that day, then he’d never have attempted that stupid stunt, and he wouldn’t have spent the past twenty months in a hospital ward peeing into a catheter tube and getting sponge baths from pretty young nurses.

  Grant kept grinning at me and I grinned back. I couldn’t help it. He’d always had a bit of a lopsided goofy looking smile, which drove the girls crazy, and it was that exact grin now. You saw it, you smiled. That was just the way it was. Most people who met Grant liked him on sight.

  It wasn’t so easy for me. I had to really work for it. He had a natural charm, but I was shy and awkward. I could never hate him for it, though. I liked him as much as everybody else did.

  Here he was, propped up in bed with a fixed grin on his face and he was still more likeable than me.

  Mum planted a big kiss on his forehead like she always did, leaving lipstick marks that the nurses would clean up in the morning at sponge-bath time. Then she plonked herself into the chair next to the bed and started chatting.

  I sat on the end of the bed, next to the raised lump in the blanket that was his feet, and tuned out a bit. Mum talked incessantly when we came here. She wasn’t content to sit quietly. She wasn’t happy just to be with him. She had to talk to him, sharing all sorts of gossip and every single detail of her daily life.

  It wasn’t for his sake. If he could have heard her he wouldn’t have been the slightest bit interested. He would just have said, ‘Whatever. Later, Mum.’ And he would have been off out for a bike ride. If only he could.

  No, it wasn’t for him, it was for her. By talking to him, pretending that he was listening, she somehow forgot that there was nothing going on upstairs. That she was talking to a living, breathing doll. He wasn’t real. He didn’t even blink, for God’s sake. The nurses had to come in every hour and lubricate his eyeballs with drops to stop them drying out.

  My father, our father, had dropped dead of a brain aneurism four years earlier. One minute he was talking at the dinner table. Next minute: gone. That was hard. It was hard enough for me, but I can’t imagine how Mum managed to cope with it. And now this.

  She talked and I sat and watched, and I smiled at him, smiling at me, but my mind was elsewhere. On my university work.

  I applied for a couple of neuroscience courses at university, and was accepted with the help of a glowing recommendation from my Year 12 dean.

  Originally I was going to study biochemistry. That subject still fascinates me, particularly the communication between cells. There are huge advances being made every year in biochemistry and I wanted to be a part of that.

  But I changed to neuroscience because of what happened to Grant.

  Maybe at some deep level I imagined myself finding some kind of miracle cure for brain-injury patients and bringing them back from the dark void they were in.

  Maybe I thought that. Maybe I didn’t. But I chose neuroscience and in one of those happy accident things it turned out to be the right choice. I loved it.
/>   The brain is such a fascinating and complex piece of machinery and even the top neuroscientists don’t fully understand how it works. Studying it is like being an early explorer, setting off in uncharted waters, unsure what you will find or where it might lead.

  My lab partner, Charlize, and I had been working on a project that I thought was unique in the world of neuroscience and that was almost ready for testing. When it was ready I needed a test subject. And I had one. Lying on the bed in front of me.

  The science was relatively simple. Speech is controlled by a small section of the left frontal lobe of the brain called Broca’s area. It’s named after a French surgeon, Pierre Paul Broca, who figured it all out.

  That’s the first thing you need to know.

  The second thing involves electroencephalography (EEG). That’s just a big fancy word for covering your head in electrodes and detecting neural oscillations in the electrical signals produced by brain activity.

  Okay, let’s simplify this. An electroencephalograph is a machine that picks up your brainwaves and displays them on a computer screen.

  Charlize (who is a genius at the electrical stuff) and I had been working with an EEG electrode array, experimenting with the placement of the sensors, and a lot of other variables, to try to focus the system on Broca’s area. You see where this is going. Our plan was to try to find a way to detect speech activity in patients who could not communicate otherwise.

  Not brain-dead patients. If there were no brainwaves, then there’d be nothing for the electroencephalograph to pick up. But we planned to work with people like my brother, who still had discernible brain activity but were unable to express themselves in any other way.

  Some locked-in syndrome patients, for example, can squeeze a finger or blink their eyes to answer simple yes/no questions. Others, like Grant, couldn’t even do that.

  But if there was anything going on upstairs, and if he was trying to speak, then that should produce activity in Broca’s area.

  What Charlize and I were hoping for was to be able to detect a positive or negative mental state. In other words to detect a pattern of brain activity that indicated a ‘Yes’ and a pattern for ‘No’.

  Of course we wouldn’t be able to detect any patterns unless there was something actually going on inside my brother’s head.

  We stayed at the hospital for an hour that Sunday, a bit longer than usual, then said our goodbyes. Grant just sat there and grinned his goofy, happy grin as we closed the door on the way out.

  TUESDAY

  After a minor breakthrough on the Monday (thanks to Charlize, not me) we took four large plastic boxes of equipment out of the lab on the Tuesday and put them in the back of Charlize’s mother’s car. Charlize drove us to the hospital.

  Grant’s doctor attended at the start. I don’t think he was all that interested. He just wanted to make sure that we weren’t going to do anything nasty to his patient.

  Once we showed him the equipment we were going to use, he seemed satisfied, and left us to it, happy that we weren’t going to give Grant electro-shock treatment, or blast his head with radiation, anything like that.

  Yeah, like I’d do something bad to my own brother.

  Charlize is so cool. She’s one of the smartest people I know, and I was very happy that we paired up for our lab work, for lots of reasons. To see her, you wouldn’t pick her as a science genius. She dresses more like a surfer chick than a scientist: shaggy blonde hair, ragged jeans, outsized t-shirts and all that. She had a boyfriend, and even if she didn’t, she was too old for me. I mean she’d never be interested in someone a year younger than her, and even if she would, I wasn’t in her league. Grant would have been, maybe not intellectually, but he would have won her over with his charm.

  But he was lying on a hospital bed, grinning at us and drooling.

  First thing Charlize did was find a tissue and wipe the spit off his chin.

  ‘I could have done that,’ I said.

  ‘No big deal,’ she said.

  We set up the equipment together. It consisted of a laptop that connected to the signal processor, which in turn connected to the signal amplifier, then to the EEG receiver and finally the sensor array.

  The skullcap part of the equipment consisted of a network of a hundred adjustable sensors, each of which had to be positioned in a precise place on the skull. Some on the face, but mostly over the top of the skull and on the temples.

  The signals are tiny, which is why the signal amplifier was needed to boost the information before the signal process turned it from analogue into digital information that could be displayed on the laptop screen.

  The science and the technology were sound, and well proven.

  What we were intending to do with it was highly experimental.

  The nurses had shaved Grant for us that morning, and not just his chin and cheeks. They had shaved his head. That made it easier to position the sensors.

  Charlize adjusted the sensors, while I set up the computer and other gear. To get everything in the right position, half the time she sat, straddling him, on the bed, with her chest in his face. Even in a coma, my brother got more action than I did.

  The tuning took hours but the results were disappointing. Broca’s area was mostly uneventful. A few farts and burps, but nothing of any sustained intensity that could be recorded or analysed.

  Charlize sensed my disappointment and when I finally switched off the computer she came and put her arms around me. I sighed and wished I could have put my arms around her also, but that wouldn’t have been appropriate. She was consoling me, not cuddling with me.

  ‘I’m really sorry,’ she said.

  ‘It doesn’t mean that it won’t work,’ I said. ‘Just not on him. We’ll have to find another subject.’

  She nodded. ‘No sweat.’

  It wouldn’t be ‘no sweat’. It would be a lot of sweat. Finding a suitable subject, gaining all the permissions, it would have been a lot easier if there’d been something going on in my brother’s brain.

  ‘I’ll help you pack up,’ Charlize said, dropping her arms. I really wished she’d put them back. It had felt nice. ‘I need to meet Paulie at 6.’

  What kind of a name was that? Good for a fish, or a parrot maybe – but not a boyfriend.

  ‘No, I’ll do it,’ I said. ‘You go. I want to quickly try the right side before I pack up.’

  There have been documented brain-injury cases where the centre of speech has somehow switched itself from the left front temporal lobe to the right. The brain is an amazing organ. It compensates, repairs, rearranges things to try to get them to work. If there was even the slightest chance that Grant’s brain had done this, I wanted to try it.

  A nurse came to the door as Charlize was getting ready to leave. She was older, grey-haired, severe, not one of the ones that Grant would have been hitting on. She looked like a prison warder.

  ‘Visiting hours are over,’ she said, ‘I’m going to have to ask you to leave.’

  She sounded like a prison warder, too.

  I found our doctor’s permission slip and waved it at her as if it was an all-day pass.

  ‘We have permission,’ I said.

  She didn’t blink. ‘Visiting hours are over.’

  Charlize put a hand on her arm and, talking quietly, drew her outside. After a moment the nurse popped her head back in and nodded.

  ‘You have an hour,’ she said. ‘We need you out of the room after that so the nurses can perform their duties.’

  ‘Definitely,’ I said. I had a feeling that the nurses’ duties involved changing colostomy bags, things like that. And I didn’t want to be around for that.

  Charlize smiled and waved as she left.

  Recalibrating our equipment to the right temporal lobe took about half an hour. Fine-tuning it took almost as long. I ended up with just
a couple of minutes before the prison warder threw me out.

  I wasn’t expecting anything, but I had to know.

  I sat on the visitor’s chair with the laptop on my knees, looked over at Grant, and said, ‘Hey, big bro, how you feeling?’

  A pattern of colour exploded onto my screen.

  I stared at it for a moment, unsure about what I was seeing, the laptop slipping slowly away. I had to grab at it to stop it sliding onto the floor.

  ‘Can you hear me?’ I said.

  Another, slightly different, and much quicker pattern of coloured dots.

  ‘Do you know who I am?’ I asked.

  The pattern repeated. It was possible that I was seeing a pattern that indicated a positive answer. In other words, he’d just said, ‘yes’.

  I said, ‘Is your name Grant?’

  Same pattern, therefore same response. Yes. Maybe.

  ‘Is your name Obi-Wan Kenobi?’

  A different pattern. Possibly negative. No.

  The first had been like a starburst, with lots of reds and yellows. The second was more like an inward spiral, dark oranges and blues.

  ‘Am I your mother?’

  The negative pattern.

  ‘Am I your sister?’

  Negative.

  ‘Am I your brother?’

  Yes.

  I wanted to hug Grant, but I didn’t. It would upset the delicate mess of sensors attached to his skull. I was short of breath, hyperventilating, beyond myself with excitement. I wanted to call Mum, but I didn’t. First rule of science. Quantify, qualify and prove your results before you shout them out to the world.

  I told Charlize, though. I used some of my precious pre-paid minutes to ring her from the bus on my way home. Strangely, she wasn’t as excited as I expected her to be. She sounded flat and dull. Interested, but not excited.

  I guess she had to see it for herself. She probably thought I was exaggerating, or seeing things that I wanted to see, because it was my brother.