Hold My Hand

Glenys Carl, Pan Books
Hold My Hand: A Mother's Journey


If Scott's story were a Hollywood film, he would awaken with a yawn and a lazy smile, casually reach out for my hand, and ask for a huge dish of chocolate ice-cream. But films are fiction, and not how someone wakes after three months in the deep freeze of a head-injury coma. Muscles atrophy and lose mass. Tendons and ligaments contract, causing knees to bend and arms to crook. In a prone position, the body's blood is evenly dispersed. The heart relaxes and nearly forgets how to pump, so that even the smallest movement can lead to over-exertion and rapid exhaustion. Lacking stimulation, the brain shuts down to the point where even simple thoughts require great effort. Sometimes a part of memory is erased, as if a videotape has been passed over a magnet. Waking from a deep coma takes weeks, sometimes months, of tedious therapy with uncertain consequences. As well as suffering from the after-effects of the coma, Scott has damaged nerve and brain tissue from the fall.

The first sign of Scott's awakening is the imperceptible flicker of an eye. I am sitting on his bed, his hand loosely cupped in mine, when I catch the flicker. Shifting forward to focus intently on his face, I watch and wait for what feels like an eternity.

There again, another flicker, but this time it is more a shallow blink. He blinks once, then again, and one of his lids is partially open. It is only a crack, but I see his eye. Is he looking my way? My heart races, my breath quickens and turns shallow. My hands perspire. For months Scott has lain with tightly closed eyes, till I began to doubt even their colour. Now suddenly, finally, he is opening from that world. Could my butterfly be emerging from his chrysalis?

Firmly I grasp his hand. 'Scotty,' I whisper, 'can you hear me? If you can, squeeze my hand.'

I await his response while fighting to calm my chills and control the roar of my own rapid breathing, for fear of missing another sign. After several minutes, I slowly repeat my command and wait again in the vacuum of expectation. Then I feel it. A squeezing pressure on my hand, so slight it might have been a feather landing on my skin. But the pressure is unmistakable and deliberate. My heart leaps.

'How are you doing this morning, Glenys?' a quiet voice says from behind. I didn't hear Dr Croches enter. But I dare not turn around. Scott and I are communicating. It is more than that: I am sending him my energy, refuelling my son's spirit with mine, and giving him the strength and desire to break the bonds of his sleep. To turn away now might set him back.

'Scotty's waking up,' I hear myself say. 'He opened an eye. I've been talking to him, and he responded, he squeezed my hand.'

Dr Croches moves to Scott's side, leaning across the bed to pass his hand in front of Scott's face, checking for eye response. Noticing nothing, he gently lifts Scott's eyelid. His eye seems fixed in an unfocused stare, but his brown iris constricts in reaction to light. Dr Croches steps away from the bed and crosses his arms, deep in thought.

'I guess there are miracles,' he says quietly, more an inner thought than an outer comment. I feel the warm touch of his hand on my shoulder, a silent affirmation that I have been right all along, that my faith has been true, and we have surmounted unbelievable odds.

But my thoughts are elsewhere, sorting through unknowns. My son has begun to wake up, but to what? Where is the joy in this small victory when such a heavy burden remains? Has he returned a vegetable? Will he ever walk again, or even talk? How long before the hospital evicts us? Scott's visa has long expired, so I know it's just a matter of time. Where could we go? Live in the moment, my inner self commands. Do what you can today, trust you'll be able to handle the morrow.

The next day brings even more stress. Unannounced, the immigration doctor appears, a burly no-nonsense man. He walks briskly into Scott's room and stands at the end of his bed looking through a sheaf of papers, which I imagine to be Scotty's medical records. Clearing his throat with a loud harumph, and without turning my way or looking me in the eyes, he begins to speak. In the silent confines of the room, his voice roars.

'So what are we going to do with this young man? Obviously he is in no condition to go anywhere, but his visa has expired, and that means he's here illegally. You are also here illegally. So pray tell me, what are we going to do?' Moving to the side of the bed, his eyes run the length of Scott's immobile frame while he nervously tugs at the tip of his chin. 'His visa has expired and our records show that you do not have acceptable insurance for rehabilitation. That's a problem. Yes, that's certainly a problem. He is certainly not well enough to travel.' He glances at his sheaf of papers, then leaves the room, saying, 'I'll be back. I'll call you.'

When the doctor departs, I sit for a long time staring at the wall over Scott's head. What can I do? Immigration has already informed me they will not renew Scott's or my visa. If we did have renewed visas, we could claim additional benefits, but the Australian government will hear nothing of it. Where could we go? I have no idea. But, it hasn't happened yet, has it? I resolve to make the most of the time I have.

Gradually Scott gathers strength. Within days both his eyes open. He remains too weak to move his head, but as his brain re-engages, his eyes shift and blink as they slowly roam the room to gather and process intelligence before exhaustion sets in and he drifts back into sleep. Other times he opens his eyes only to stare into the ceiling, disengaged, unblinking and unfocused, as if his mind is unable to escape the gravitational pull of his alternate world.

I tell him, 'Do not be afraid. You cannot speak yet because you have a tracheotomy tube in place. When the doctors remove it, you will be able to talk. You were hurt, Scott, but you are now beginning to get better. I want you to feel safe, and concentrate on getting better.'

In the ensuing days I redouble my efforts to further his rehabilitation. I read to him longer, and with a firmer voice, believing that even while he sleeps my words are stimulating his brain. With renewed vitality I massage his hands and fingers, slowly and gently move his good right arm, and manipulate his feet to stretch the Achilles tendon. But I sense I am walking a thin line. Too much stimulation might be more dangerous than too little. Overloaded, Scott's brain might shut down to seek refuge in the protective tranquillity of his coma. How much is too much? Where is the trigger? How will I know? Don't ask questions, my inner voice instructs; trust your feelings, trust what Scotty tells you. As if responding to my determination, his body responds. Each day he stays awake a little longer. He flexes his fingers a little more, and with my gentle help, he moves his good arm and his head slightly.

At the end of that week, a steel tilt table is wheeled through the door. After months on his back, Scott's heart, organs and muscles need introduction to the stress of vertical living. Reborn into his new life, like a baby, he will need to relearn the most elemental of skills. From across the room, I watch the orderlies carefully lift Scott from his bed to the brown cushion of the tilt table where his body and each limb are carefully strapped into place. A physically fit patient would assist in his own transfer by stiffening his muscles, but Scott's muscles are shrunken, making the short lift from one bed to another a delicate manoeuvre.

At first the tilt table is raised only a few degrees for one to two minutes, while a technician checks his pulse and carefully monitors the colour of his face. If Scott's face turned ashen, a sign the heart was overworked and blood was pouring to his feet, the table would be lowered immediately. But his pulse remains strong and his face looks healthy. The table arrives daily, and gradually over the next five weeks the incline is increased: five degrees, ten, fifteen, then forty-five, while the length of time is also increased from one minute to five, then to ten, fifteen and up to thirty.

But as the table slope increases, gravity weighs in with its own consequences. The tracheotomy tube still inserted in Scott's throat takes on a new weight as its angle changes slightly, and sometimes causes pain at the incision. Arm and leg muscles, long accustomed to the horizontal support of the bed, find themselves hanging vertically with an unaccustomed weight that strains their attachments to the bones. Internal organs that had found a new nest within Scott's horizontal body are now being stretched from their comfort and forced to reposition themselves normally. Yet through all the pain, barely a moan escapes his lips.

Suddenly I feel weak and insignificant. Could I be unworthy as a mother? My own self-indulgence, suffering, my weeks of self-pity, loneliness and guilt pale next to Scott's struggle. Who is being healed here, and who is the healer? Rather than my nurturing him, Scott inspires me. He gives me the spiritual and emotional strength to carry on, to be a better person.

In the second week of the tilt table therapy, a speech therapist appears, pushing a small white cart on wheels. 'I'm here for Scott's swallow test,' she announces with a cheery smile. 'We've been feeding him by tube, and now we have to see if he can feed himself,' she adds, as she jockeys the cart closer to the bed. 'People in a coma forget how to eat; their swallow muscles get lazy. So what we're going to do now is see if these muscles still work.'

From a bottle she pours a few drops of dark liquid into a spoon, and supporting Scott's head with her left hand, slips the tip of the spoon into his mouth to see what might happen. The muscles in his throat constrict as he swallows the drops. 'That's very good, a good first step,' she says, as if Scott were an average patient with an average broken neck. 'It seems you haven't forgotten everything. Now how about we try some jelly, something nice and soft.' With a spoon she places a small amount of jelly into his mouth. Again Scott's throat muscles ripple as he swallows. 'Swallowing is more difficult than you think,' she says, while closely observing Scott's responses.

I am deeply amused by her unusual chattiness. Perhaps like so many others who daily enter our room, she has been inspired by Scott's struggle and miraculous recovery.

'We take swallowing for granted, don't we?' she bubbles on, 'but when you have forgotten how to swallow, you have also forgotten so many other things, like coordinating your tongue and breathing with swallowing. Of course this is unconscious. It's really a brain problem, you see. If Scott tried to swallow this jelly at the same time as inhaling, he might suck food into his lungs. So his brain has to sort it out, to relearn its old habits.'

She spoons another small helping of jelly into Scott's mouth, which he handles fine. 'He's doing so well, Glenys. We'll do this for a few more days. If he passes with good marks, we can probably remove the tube.' Gathering her equipment, she wheels the cart from the room.

I feel an immense sense of relief and accomplishment. Another small step. No, not a small step, a big, big step, a more-thanmonumental step towards life. Slowly my fears are being tamed. I know now he can eat, but can he speak? I won't know the answer until the tracheotomy tube is removed. In the meantime I will work on Scott's language comprehension.

Next morning, I find a large piece of cardboard, about two by three feet, and with a black marker write words in large letters across it: red black hot cold sleepy music yes no.

I prop up Scott's body with pillows and sit on the side of his bed holding the sign about two feet in front of his eyes. 'Now then, Scott, I will say a word and I want you to point to it. Just point with your eyes. I'll know what you mean. Do you understand?' I search his brown eyes for an answer. They are looking at the board, but reveal little understanding.

'Good.' I continue the game. 'Now find the word “hot”.' Scott continues staring at the board, then slowly his eyes begin a crawling search until several moments later they focus on the word 'hot'. I breathe a deep sigh before continuing. We work through my list of words. My confidence grows that his brain is capable of processing abstractions. I also notice that as his eyes search, he is trying to move his arm, as if driven by a compulsion to point.

'Scott, can you point to the word? Is that what you want, to point? If it's yes, squeeze my hand. Do you understand? Squeeze my hand.' Clasping his good hand in mine, I wait. His response is not immediate, but I am learning patience. Somewhere in his brain a neurological battle rages. Electrical impulses fire and misfire in chaotic order while his confused brain feverishly works to sort it out. But there it is, a squeeze. Awkwardly, Scott bends his thumb into my flesh.

I begin the routine again, asking him to identify various words, while this time I support the weight of his arm, letting him guide his finger to the correct response. In the days to come, lifting and stretching his arm to model the act of pointing will consume many hours.

A few days later, Dr Croches strides through the door. 'It's about time to remove the tracheotomy tube. He seems to be handling things on his own. With your help and determination,' he adds with a knowing smile, 'I don't think he'll starve.'

'I've been meaning to ask you something,' I say. 'I've been reading in the library about brain damage. I read that a brain can learn new pathways, and that it can rewire itself to compensate for damage. Is that true?'

'There is research to that effect,' Dr Croches says a bit guardedly, 'but it's not definitive. It is possible. I mean it hasn't been disproved. With the proper stimulation, Scott's brain might well learn new pathways.' Dr Croches silently appraises Scotty with thoughtful, narrowed eyes. 'Knowing your son, Glenys, I would think anything is possible.'

'Well then,' I reply, 'as soon as the trachea is removed I would like to put Scotty in a wheelchair and tour him about his new grand house, the hospital!' I was giddy with anticipation. 'He needs to travel a bit and see the sights.'

Dr Croches' face clouds over. 'I'm not sure he's ready for that. How long has it been? Three weeks. I don't think he's strong enough to sit up.'

'We can make it, I know we can. I'll prop him up with pillows and strap him in. We both need this.' With a sigh and a raised brow, Dr Croches nods assent.

True to his word, a few days after the incision in Scott's throat is sewn up, a wheelchair appears. After propping up Scott's body with pillows and strapping him in, we set off down the same long corridors I so often walked alone in the solitude of night. Now I'm exhilarated and walk with a wide smile and the full stride of a conquering heroine. Never have I felt so free and full of life, even though Scott cannot hold himself up. Repeatedly, his body slides toward the floor and I am forced to stop and pull him upright, rearranging the pillows before continuing. This is my first experience of dealing with Scott's full weight. Sobered, I wonder how I will ever manage without the assistance of hospital staff.

Turning a corner, we enter the lift and down we go to the basement cafeteria for his favourite treat. With a plastic cup of chocolate ice-cream set before him, I push a silver spoon into Scott's good hand, and wrap his fingers around the handle. But he has trouble grasping the spoon, and even more trouble manoeuvring it into his dish. So I help him scoop, and when he cannot get it into his mouth, I help again. With the first taste of ice-cream, Scott's eyes glow with excitement and the right side of his mouth breaks into a crinkled, wooden half-smile.

Several more times we practise eating, but it is a slow process and he grows frustrated. Dropping the spoon, Scott reaches out awkwardly and jabs his fingers into the bowl, scoops the ice-cream, and erratically pushes it into his mouth, leaving a broad brown smear across his face. I wipe his fingers clean with a white napkin, and as I lean forward to clean his face, Scott clumsily hooks his right arm round my neck and pulls me forward, planting a sloppy, chocolatey, flat-lipped kiss on my cheek. Stunned, I pull back to look into his sparkling eyes, and for just a second detect the faintest flash of his old devilish sense of humour. Tearing up, I blot my eyes with the back of my hand, wipe at the streaks on my face, and in the process smear chocolate everywhere.

I am desperate to run off to the bathroom for a mirror, but I dare not leave him alone. Propping him in his chair, I quickly turn for the lift. Upstairs I move as quickly down the hallway as I dare while keeping my head lowered. Surely I won't be noticed with chocolate all over me. But I am. Nurses see me coming and grin as I pass. Orderlies notice as they push loaded trolleys fresh from surgery. Even ambulatory patients, normally preoccupied with their own travails, stop hobbling on their crutches to give me a quizzical look.

By this time I've decided I don't care. I hold my head high for the world to see. My son has just given me a kiss. In his room I check the mirror and I'm surprised to see a clean face. What are these people looking at, I wonder, or were they looking at all? What's happening to my mind?

I make flash cards from pieces of cardboard, each with a word written in large black letters, and hold them up to train his voice. First I pronounce the word, then encourage Scott to do the same. It is difficult and exhausting work, but it must be done. Like any newborn, he must learn to speak. He must learn to purse his lips, to shape sounds, to use his tongue, and to control his breathing. Somewhere locked in his mind, the circuitry of speech lies dormant. Through repetition and modelling I am determined to find and energize that circuit. At first Scott's responses are muted or exaggerated, sometimes only gurgles, sometimes loud grunts. Eventually he modulates his responses, and as breathing, muscle and sounds converge, his speech patterns improve to the point where we can carry on halting but often difficult conversations.

Thankfully, Scott's burden is no longer solely mine. Jonathan with his solid and caring nature has his visa extended and settles in for a longer stay. His wife Ulla has also come to help and to see for herself how Scott is improving. We don't tell Scott Ulla is coming so he is surprised when she walks into his room, and immediately picks up her hand and starts kissing it. I'm sure he's gratified that his extended family are rallying around. And Ulla is touched by his exuberant greeting, knowing how much pain he is in. Having Jonathan and Ulla there ends my isolation and provides a needed sense of family. We make Scott's room our home and at night we alternate sleeping on the waiting room couches or on Scott's bed.

Scott's old apartment on Potts Point is still available as the rent has been prepaid, and I persuade Jonathan to move in. We devise a schedule of twelve-hour shifts. Night or day, one of us will always be at Scott's side. When the apartment rent expires, my friends Rollie and Robin offer Jonathan their spare bedroom. Every day he rides a borrowed bicycle twenty-five miles from their home in the suburb of Sutherland to the hospital for his shift, then rides back at night or the next morning after I take over. Jonathan's a very strong bicyclist.

Jonathan passes the hours reading to Scott. Over the next several weeks they manage to consume the entire Lord of the Rings trilogy. Sometimes he straps Scott into the wheelchair and takes him to the hospital roof for a small amount of sunshine. When we leave Scott at night, we always make sure a tape is playing so he has at least a half hour of music.

For the first time in months, I am able to enjoy a few luxurious days of freedom. On my days off, Julie Clarke's mother, Johnnie, invites me to her home near the beach in Gymea. Rising early in the mornings, I walk the sand, inviting the sun and breeze to restore my depleted spirit. After a long nap I return to the beach to swim and swim until I can barely crawl from the surf. I didn't know how exhausted I was, how close I was to an emotional breakdown, until I experienced the freedom of the sea. How does one express gratitude to another for the simplicity of their friendship, a private room, a soft clean bed and a hot cup of tea? Whom do you thank for a swim in the ocean, for the luxury of solitude on a deserted beach, for your health and serenity? I am beginning to love life again.

After five weeks Scott graduates from the tilt table and a staff psychologist comes round to assess my son's mental competence. Mid-height, in his late thirties, unsmiling in a sterile white coat, he enters the room under a halo of gloom. One can tell so much from a person's eyes – warmth, humour, sincerity, fear – but his are flat and empty. I wonder if he isn't depressed himself. Certainly he lacks the most essential ingredient of happiness, a sense of humour. Sitting on the side of Scott's bed, the psychologist methodically runs through a battery of questions in a monotone voice while I sit tight- lipped in a chair against the side wall.

'What time of day is it, Scott?'

A long pause. Finally Scott answers. 'It seems I've lost my watch.' The psychologist frowns and makes a mark in his file. I know Scott has no clue – there are no clocks in the room, and even a glance out the window reveals little more than filtered daylight. I say to myself, I must get Scott a watch.

'How did you get here?'

Scott's face creases as he vainly searches his mind. With the short- term memory loss that comes with head injury, I already know there will be no answer that satisfies.

'UFO, and they're not coming back,' Scott finally says with that crooked, half-frozen smile that signifies a joke, a smile the psychologist misses as he frowns and makes another mark. But I am amused. Scott knows he doesn't know, so why not throw out something wild? He chooses humour over despondency.

The third question: 'Do you know where you are?'

'The Ritz Hotel.' I've forgotten to tell him the name of the hospital he's in.

The psychologist grows agitated. His patient is not cooperating. The questions continue for another twenty minutes. Scott's answers are short and off the point, perhaps slyly so, and to me humorous. When the man leaves, I am sure Scott has flunked his mental test. But then I realize that might be a good thing. Wouldn't the hospital be less inclined to release someone detached from reality? Unknowingly, Scott may have bought us some more time.

I have just pulled my chair to the bed and am about to read to Scott when Jonathan unexpectedly appears, pushing a wheelchair seating a young man with a badly disfigured face. They are on their way to the roof for some sun, Jonathan tells me, but he wanted to swing by to say hello and introduce his friend Tim. I have seen the young man before. Often I look up from one of my daily tutorials with Scott to see Tim at the door peering in, but before I can say anything he is gone, leaving me with that uneasy feeling of having encountered another lost soul.

Tim was one of the nineteen other patients in Scott's old ward, Jonathan later tells me, the one whose face was swaddled in white bandages after he put a gun in his mouth and pulled the trigger. The bandages are gone now, and even after several reconstructive surgeries, his face remains shattered. His upper jaw is mostly gone, as is his nose, cleanly shot off leaving two gaping holes for nostrils. Tim is deeply depressed, and bitterly angry with the surgeons who saved him, for they rescued him from one hell only to thrust him into another. Knowing his disfigurement and his visceral impact upon others, Tim hides in his dark room, refusing to be wheeled outside or to meet others. For some reason, however, he has found a friend in Jonathan and allows himself to be taken to the roof.

After Tim is introduced to Scotty and me, he appears more often at our door, sometimes even wheeling himself in to quietly observe. I talk to him obliquely, but not directly facing him, as I soon learn this drives him away. Years later I will find myself thinking back to the bitterness of Tim, a victim of his own hand, and to the bitterness of Ron Kovic, victim of a war that left him a quadriplegic. And I think of other victims I've met, who cope not with bitterness but with smiles and soaring spirits. Why is it some people emerge from adversity with a will to conquer, and others with a will to die? The great tragedy is not our death or disfigurement, but what dies inside us while we are living. Sometimes we forget our responsibility to ourselves and drift through life into nothingness.

If it hadn't been for a phone call from Stefan in Germany, Christmas might have passed with scant notice. 'I'm flying into Sydney to see you and Scott,' he tells me. It is strange hearing that distant voice after so long, and I'm unsure how to respond. But I can't say no. Not to someone I have known so well. A firm anchor to my past might be just what I need. When Johnnie hears Stefan is coming, she kindly invites us to spend Christmas with her. Stefan arrives, and with some foreboding, Jonathan, Ulla and I check Scott out of the hospital and move to Johnnie's for three days.

It is a wonderful time, and a bright spot into what my future may be like with Scott at home, finally.

We all exchange Christmas gifts. Scott's trumpet has been sent from America by friends who are storing some of his possessions. We hold it up for him so he can use his good hand to play the notes, and see if he can blow it. We all laugh at the funny sounds coming out. Even Scott laughs at himself.

Even though I relish the sanctity of her home with its gay Christmas tree and carols and a strong feeling of family, Scott is a little out of his element, and I realize, more difficult to manage. We sleep little, and I'm emotionally spent. With Stefan pressing to rekindle our relationship, given my burdens, the holidays lose their edge. Soon after, I return Scott to the hospital and Stefan departs for Germany, leaving me emotionally disorientated with unanswered questions. He's a good man, and thinks so much of me; perhaps I should have been more receptive. Will I ever enjoy another relationship? But I can't live in Germany, and I can't sacrifice Scott's future to my own confusion and uncertain desires.

That night I overhear Scott and Jonathan reminiscing about the times in Denmark when they both lived in Copenhagen and how little time they actually spent together compared to how close they were growing up. Scott says, 'Hey, you had your reasons. A new lady [Ulla]. That part of your life was just as important as us being together as brothers and friends.' This means a lot to Jonathan, because he is battling missing his little brother and a lifetime of memories and trying to accept Scott in his new injured form. Scott was Jonathan's shadow for their entire childhood and they never got tired of each other. They never understood friends who didn't want their little brother or sister around. But it seems to dawn on Jonathan that all he had with his little brother is still there, right in front of him. It's nice that we can all be together this special Christmas, feeling the warmth of everybody's caring.

I will never forget that sunny morning when Dr Croches walked into Scott's room with a smile on his face. 'I have good news for you, Glenys,' he says quietly, so as not to wake Scott. 'We believe your son is well enough to be discharged. But better yet, arrangements have been made for him at the Coorabel Rehabilitation Hospital. It will take a day or two to sort out, but you might want to pull your things together.'

I am so stunned that I can only stare at Dr Croches in disbelief. I'm not even aware that he has walked out, or that I am fumbling about for a chair, fearing my lightheadedness and shortness of breath presage a collapse. Four months in this small box of a room, six months of nights curled on Scott's bed, four months of struggle to push back the pall of defeat, finally to be told Scott is well enough to leave. And not simply to leave, but to be transferred to a rehab hospital, even after the immigration doctor has emphatically stated, 'Impossible! Your visa won't allow it.'

I leap from my chair and with nervous excitement pace the room, my mind racing. The word 'rehabilitation' echoes like a church bell. Now we will make real progress. Now with professional help, Scott will learn to walk. He will learn to talk. Now his brain will mend and he will be made whole again. It will be hard work, I know that, but now it will happen. All my prayers, all my dreams, all my hopes are being answered. I dream that night of the Coorabel Hospital, but what I don't dream of is what I actually find.

Coorabel, formally known as the Royal Ryde Rehabilitation Hospital, is twenty miles from St Vincent's, on Charles Street in the suburb of Ryde. I might just as well be in another country. It's a single-storey building with a red tile roof set in a verdant garden with a wall. Coorabel houses about sixty patients in wards of four to ten patients each. Scott is placed in a small ward with three others, all bedridden. One has suffered a debilitating stroke. Another has an inoperable brain tumour, and the third has a head injury. No longer allowed to spend the night, I seek refuge with Johnnie who arranges for me to borrow a small car for the forty-five-minute daily drive.

Jonathan also rearranges his commute, which is now longer than the twenty-five miles he used to pedal.

Unlike St Vincent's, where I was allowed to decorate Scott's room and where the doctors were open and supportive, at Coorabel I am treated as an inconvenience. The doctors seem secretive, with no one person in charge of Scotty's treatment. It is nearly a week before I meet the senior doctor. I am massaging Scott's right hand, working as always on both hands to build strength and circulation, when a heavy-set man briskly enters our small ward. 'I am Dr Rosen, head of the hospital. And this is Scott Carl?' I nod yes, but he isn't looking; he is flipping the pages of a brown file. What strikes me is the cool distance of his voice and the fact he speaks to me in the abstract, as if I am little more than a translucent shadow, even though I am now at his side.

'You've been here how long? Yes, it says here a week. Our facility is different from others. Our patients have severe problems. They are here for therapy and cannot tolerate noise or disruption of any sort. So you will be asked to conform to our rules precisely. Limit your time to visiting hours. No visiting at night. And you are not allowed in the therapy rooms. It is for the good of the patients.'

Finally Dr Rosen turns my way. 'Scott is here for therapy,' I say, gathering courage. 'But he has a problem. When he fell he broke his left clavicle, and because he was in a coma it was never fixed. I know it's giving him a lot of pain. What can we do about his left arm?'

Dr Rosen appraises Scotty's upper body, then glances at me. 'I suggest you forget he has a left arm.'

My amazement leaves me speechless. How can he say that in front of my son?

'Doctor, there's nothing wrong with Scott's hearing,' I say coolly, my temper rising. Scotty is in fact quietly absorbing every word.

'You have to stop being in denial,' Dr Rosen responds. It hits me then that this doctor, who knows nothing of Scott except notes in a chart, has already written my son off as hopeless. Later I come to understand how a lack of money forces Dr Rosen to make hard choices regarding the kind of treatment he can offer but now I am really angry.

'How would you like it if I chopped off your left hand?' I spit out. Immediately, I regret my outburst, but I'm only human and this man is destroying my hope. Dr Rosen looks at me with wide eyes.

From across the room, Scott's voice growls, 'You don't know it, but you're dealing with my mom. I feel sorry for you.'

Dr Rosen's jaw tightens. Abruptly he turns on his heel and walks out the door. I go to Scott's side. 'Don't worry, we'll get it moving.'

'I know we will,' he says, giving me a one-armed hug and an awkward kiss.

How could I say otherwise? He believes in me and I believe in him. Together we will move mountains. But I have a nagging premonition that Scott and I may have unknowingly joined Alice on her plunge into a mad-hatter wonderland of frustration and illusion.

Each morning after arriving from Johnnie's, I wheel Scott to the therapy room where I leave him for two hours until I collect him for lunch in the small cafeteria, surrounded by many other patients. There I notice a young man, a policeman who was shot on duty, who always sits at the table next to us, unmoving, with his head slumped over his food. After a while, an orderly appears to remove his untouched food. I find this strange, and one day I ask the orderly why the policeman never touches his food. 'I don't know,' the orderly says. 'I'm not sure he knows how to eat. Doesn't matter really.' He shrugs. 'The nurses will feed him later by tube.'

The policeman's mother, nicely dressed and very tidy, often joins him for lunch. She sits at the table, nervous and ill at ease. Her eyes show her pain. Sometimes she encourages him to eat, but never lifts a spoon to help him. After a few minutes, flustered and unable to cope, she gets up and hurries from the room. I taught Scott to use a spoon, and it occurs to me I might teach this young man as well. After his mother leaves, I sit beside him, hold his hand, and gently wrap his fingers round the spoon handle, then model the motion of eating. Within three weeks he is eating on his own. I know the hospital staff are overstretched and I have the time to spend with him. Helping this young man seems the right thing to do.

I have never been afraid of sick people. They aren't so different. As a six-year-old in Wales I would board a city bus for the ten-mile trip to take sweets to my granddad in Whitchurch Hospital, a sanatorium for shell-shocked veterans of the First World War. A large man with a kindly face and white hair, he had one eye covered by a patch and another which was very, very blue. He had lost his eye in a German POW camp. Dressed in a stiff brown uniform with medals on his chest, he would greet me with a formal salute. Then he would sit down and play cards with me, or let me read his coloured comic books, or we would go for walks around the grounds. I would curl my hand in his, and he would hold it tight. I felt very safe with him. Sitting down among the trees and flowers my shyness about singing in front of him disappeared and I sang most of the new tunes I had recently learned. I knew they meant something to him because his face lit up and he would gently touch my cheek with his hand. I would watch the other crippled and shell- shocked soldiers in their stiff uniforms march proudly by in twos and threes, saluting each other when they passed. I'm sure it was strange behaviour, but I thought nothing of it. I loved my visits to Granddad.

But I am concerned with what I am seeing at Coorabel. Another strange thing is happening in the cafeteria. Sitting with Scott, I notice many of the patients are obsessed with the wall clock. They look at their food, then up at the clock, shake their heads, and look down at their food. Soon, unconsciously, I am doing the same thing. What is there about that clock, I wonder, that so fascinates everyone? Then it strikes me. It is six hours fast. The patients are eating breakfast at noon, lunch at six and dinner at midnight. The scene is so bizarre I want to burst out laughing. How can patients rehabilitate themselves, how can they tell the psychologist the time of day, with a clock like this? I fully expect a white rabbit to run through the cafeteria crying out, 'I'm late, I'm late for a very important date.'

Every afternoon in Scott's ward, an orderly brings a plate of French fries, sets it on a side table and leaves. I watch this go on for several days, before finally saying to her, 'You never have time to sit down and eat your French fries.'

'Oh, these aren't mine, these are for the patients.'

'But none of them can walk,' I tell her. 'How are they supposed to get them?'

She shrugs: 'I am only allowed to bring them in, not serve them.' So unless one of the busy nurses are free they remain uneaten.

After more than two weeks of wheeling Scott to therapy, I begin to wonder when I pick him up why he is always in the same place where I left him. I begin to doubt he is receiving therapy at all.

When I ask one of the nurses, she tells me Scott isn't responding, so therapy is pointless. How could this be? I wonder. But I too notice he is not as responsive as he was in St Vincent's. It isn't for another two weeks that I learn the reason. Usually Scott's medical records are kept at the nurses' station, but for some odd reason when we return from therapy one afternoon, his records are on his bed. Is it a mistake, or a secret message? As I review the contents, I know instantly what is wrong. The doctors have been medicating him without my knowledge. No wonder he's not responding. He's been drugged. This is a disaster and I start to cry. After five weeks I know our days at Coorabel are numbered.

I insist on meeting Dr Rosen. When we finally meet, I relay my experiences and concerns about Scott's lack of progress and how he is being medicated without my permission. I tell him how terribly upset and discouraged I am, not only for my son but also for the others in Coorabel with similar conditions. I tell him emphatically that the situation is unacceptable, that even though I'm not a citizen of Australia and am appreciative of all their help, I feel sabotaged.

Dr Rosen pushes back from his desk and tells me with an air of finality, 'We've done the best we can. You are still in denial, Mrs Carl. I would recommend you place him in a home and return to your friends in America. When he improves, you can come back to get him.'

I am speechless. All I can do is stare. 'I would also suggest,' he continues, 'that you give serious thought to having his tendons cut. It would make it easier to care for him.'

My mouth drops and my wits return. I stand and lean over his desk. 'Then Scott would be like a rag doll. Certainly he would no longer need therapy. Wouldn't that be convenient? You would only have to water him like a vegetable. Scott and I are leaving this place as soon as I can find a flat.'

'There's no way you will be able to manage him. I will be seeing you again.'

'Dr Rosen, you will never see me again. On that you have my promise.'

It turned out that Dr Rosen was right; he would see me again later, but in vastly different and far happier circumstances. Flushed with excitement, I gaze from my kitchen windows into the small and wildly overgrown garden behind our new flat. I'm not seeing the yellow and orange flowers choked with brownish midsummer weeds, or the purple flowers of the jacaranda tree that flag the garden boundary. I am thinking of our new-found freedom and of Scott lying on the couch in our small living room. I'm thinking of the immense effort it took to get him this far. And I'm thinking, now what? What's next? I have no idea. My mind is blank.

When I stormed out of Dr Rosen's office, I wasn't thinking of the next step. Only that I must take control of my son's future, that I could no longer place my faith in the warehouse mentality of state institutions. If Scott were to have a chance, I would need to create my own therapy programme. What would it be other than love, massage and lavender oil? I didn't know, but I would be open to anything – acupuncture, herbs, Feldenkrais, hypnosis, t'ai chi, physiotherapy, moxa, magnets, craniosacral, even crystals, and most of all, people. I would be open to anyone and everyone willing to help, for I knew I would need lots and lots of help.

The very night I announce my intention to leave Coorabel, as if guided by divine hands, I receive a phone call from nurse Jenny at St Vincent's. She has a friend who is moving from a small one bedroom apartment in the bohemian Five Corners area of Paddington. It will be vacant within days, she tells me, and it has basic furnishings – a double bed, a chest of drawers, a couch and a wood kitchen table with two chairs.

The next morning, with great anticipation, I take a bus and walk to Glenmore Street and stand in front of a narrow, four-storey red brick building holding eight flats, on the crest of a slight hill. Mine is on the bottom floor, with an outside stairway that leads directly from the pavement to a partially submerged front door.

My heart races with excitement. Finally we have a home, our first in Australia, and it is perfect. No hallways to navigate. No lifts to fight. Within blocks there is a large park to wheel Scott for fresh air. There's Paddington Market for shopping. And at the rear of the flat a small garden for sunning and tasting nature. It's all so perfect, I'm bursting with joy.

A few days later, in a daring daylight operation, I bring Scott home from Coorabel. As I struggle to manoeuvre him from his wheelchair into the back seat of a cab, an orderly comes running from the building. 'I'm sorry, but you can't take the wheelchair,' he says, huffing and with beads of perspiration on his brow. 'Your visa doesn't allow it.' My fear kicks in, and I am horrified not to have anticipated this. Pulling myself together so as not to sound hysterical, I ask, 'How will I manage without it? Depriving him of a wheelchair is like cutting off his legs.' The orderly shrugs, and rolls the chair away.

In the back seat, I struggle to support Scott's weight and keep him upright. His stiff body slides about on the slick seat as the cab weaves through traffic. I tell myself, 'Be brave, be calm, take deep breaths.' Several times Scott slithers onto the floor, and I exert great effort to pull him upright again. Once, as the cab turns sharp right, he tumbles on to me, burying me under his frame. As I struggle to extract myself from his crushing weight, our eyes lock. 'Mom, we've got to stop meeting like this,' he quips. We both burst into laughter at the absurdity of our situation. In his mirror, our cabby, a young man with a blond pony tail in a Hawaiian shirt, eyes our layered bodies with curious disbelief. Pulling up in front of our new flat, the cabby turns and, laying a tanned arm along the seatback, says, 'How will you get him into your flat?'

'I haven't thought of that yet,' I reply. My eyes sweep the busy street, but I am dumbfounded.

'Should I call the police?' he asks.

'No, no,' I say, 'I'll work something out. Wait here.'

I step from the cab to clear my brain. The front door seems so far. How will I do this? Coming down the pavement is a man in black racing tights on a red, thin-tyred bicycle. I step out, blocking his way.

'Do you have a strong back?' I ask.

He brakes to a stop within inches of me. 'Sure. Why?'

I explain about my invalid son and how I need help getting him into our flat. With a shrug he lays his bike in the grass.I snare two other men, both strong and burly, with the same question. Now I have three, and need one more. Catching the cabby's eyes, I motion for him to join us, and we negotiate Scott's inflexible body out of the cab, down the stairs and through the front door onto the couch. I thank them profusely, and they leave me to manage my new reality. Now we are really alone.

Moving into the kitchen, I look out the window at the yellow and white flowers and the purple jacaranda tree, numb with the seeming hopelessness of my task. It took all that exhausting work to move Scott a few feet with no wheelchair, and now there is just me, weighing in at seven stone. How can I possibly cope? How can I get him from the couch into the bedroom, or to the table, or to the bathroom, or anywhere without a wheelchair?

I do have Jonathan, but Ulla is with him and he must divide his attention. Plus, they are staying twenty miles away. Besides, they have their future to decide. In any event his visa will soon expire and once again I must cope alone. I will need lots and lots of help.

I call Jonathan the next morning realizing that I cannot get Scott in the shower by myself; I don't seem to have the strength to lift him. He says he'll be right over, and pedals his bicycle to where we live.

He tries to stay somewhat dry as Scott sits on a chair with the water running down him. Scott suddenly coughs water that has flowed into his mouth all over Jon and puts his arm up as if to say 'Ooops!' and at the same time does his characteristic slow look up: his eyes look first, and then his head slowly rolls, saying, 'Sorry about that, Jon.' Jon says, 'Hey buddy, don't think twice about it,' and then breaks down. He can only think of Scott, who despite hardly being able to move, only recently out of a coma after such a long time, still has it in him to worry about whether Jonathan gets a little wet. It is so hard to cope with Jonathan's sadness.

Another time Jonathan has helped him shower and Scott is naked apart from a towel, his arm around Jonathan's neck, unable to stand by himself. The body that a few months earlier was playing rugby is now bent over and lopsided, his left foot not reaching the ground. About to move down the hall, he catches sight of himself in the mirror outside the bathroom. I see the surprise and shock on his face, which seem to say, 'Shit, I don't look too good!' Then the sad silence.

In general, his injury has created a condition that keeps him unaware of how bad he really is. We are lucky in this respect because, during this period, he really isn't depressed.

Dismayed at how much help I will need, I search my mind and think of the volunteers I have to press into service. It dawns on me that every minute, dozens of potential volunteers pass my door. Each hour, hundreds are shopping in Paddington Market. I need only a few. Not many, just a few at a time. Tearing pages from a large pad, I make flyers. With a pen I write, 'I need help with an invalid son. Please if you can spend even one hour per month, come by,' and give my address. I ask Scott if he will be okay for a few minutes, then walk down Glenmore Street pushing them into the hands of pedestrians.

Returning home I can only wait, but in the meantime I set my mind to procuring a wheelchair. Towards evening there is a knock on my door. I open it to two women and a man. One of the women, in her fifties with grey hair, holds my flyer. 'I brought my husband,' she says, nodding towards the man who is dressed in work clothes and carries a brown paper sack. 'And we've brought a little food. What can we do to help?' I motion them in while turning away for fear they will see my streaming tears. My prayers are being answered. Scott and I are strangers, yet these people care.

Together we move Scott into the bedroom and make him comfortable. I put on music and light a few candles. Sandwiches are passed out and we sit and talk. They tell me with warm smiles they will be back. After my guests leave, I lie next to Scott and read aloud until he falls asleep, placing his entire trust into my unqualified hands. But I do not sleep well. Every two hours I need to lift and turn him to a more comfortable position. And I will have to get him into the bathroom or bring it to him. Still, I'm wonderfully excited, and my blood pounds with exhilaration. We are winning. Scott and I, I tell myself, are winning.

The next day my three volunteers return. I create more flyers and they fan out, pinning them on bulletin boards in the supermarket, the library, St Vincent's Hospital, a bookshop and other public places.

Moments after they leave I open the door to the pony-tailed cabby in the same Hawaiian shirt. His name's Tim. 'I've been thinking, mate,' he says with a clever grin, 'that maybe we should go find ourselves a wheelchair.'

When the volunteers return, they stay with Scott. I get in Tim's cab and we are off, pulling to a stop at the entrance of Coorabel. 'The hospital?' I ask.

'Why not?' he says with a twinkle. 'If you need money you go to a bank.'

We walk into the emergency entrance. The hall is deserted except for a row of empty chrome and black wheelchairs against a wall. He shushes me, then motions for me to sit down. The cabby spins the chair around, wheels me rapidly out the swinging doors, helps me into the back seat of the cab as if I were a patient, then quickly tucks the folded chair into the boot. 'We're just borrowing it, mind you,' he says, flashing a bright smile as we speed off.

That afternoon two other volunteers knock on my door. The leaflets are working. The next day three more show up and we move Scott to a bed on the living room floor where he can be more easily handled. As the days pass, and as the word spreads, the numbers increase. Most are neighbours. Some spend an hour massaging Scott's muscles and stretching his ligaments. Others volunteer to do our mountains of laundry or run errands.

I try to take Scott out for a walk every day. It is not easy for me, standing five foot two, to manoeuvre a wheelchair carrying a man much taller and heavier than myself who has trouble keeping upright. The first challenge, especially when I am by myself, is to get the wheelchair out of the flat, up the steps and onto the street. Sometimes I wheel Scott to the steps and lift him out of the chair, which I am able to do by myself, lay him on a blanket, lift the wheelchair up the steps to the pavement, then find somebody who will help. We each take hold of one end of the blanket and carry Scott up the steps to the wheelchair. Then I'll try and get Scott on his knees and into the wheelchair. We often overbalance, Scott pinning me to the blanket. It causes much amusement among the passers-by. Some ask if they can help, and others hurry on and pretend they haven't seen anything.

Once Scott is secure in the chair, we head off down the street. He takes some bumps as we negotiate the kerbs and other obstacles along the way, and rates me on my skills, grumbling, 'Gee, Mom, that was a minus six!' Or, laughing, 'Great, Mom! Plus two!' The rating game is a regular feature of our walks over the coming months and years. It is a way for Scott to express himself, and he always keeps a generous sense of humour. And of course it keeps me on my toes.

In the evening I light candles and play tranquil music – sometimes opera, sometimes Mozart, sometimes New Age inspirational.

After a day of therapy Scott is usually exhausted with pain, but in the evening he and I have our special time of quiet. Sometimes I lie beside him and hold his hand, neither of us needing to speak.

Sometimes Scott asks me to dance for him, which I gladly do, pretending I'm a ballerina, moving around his wheelchair, laughing at how good it feels even as I realize how much more flexible I was in my younger days. When we do talk, it is of neither the past nor the future, for they have ceased to exist. We live only in the moment, for that is all we can count on, and we live each golden drop of these moments as if we'll never live another. Or we simply talk to hear each other's reassuring voice. He never says to me, 'Mom, why do you think this happened to me?' Sometimes I wonder about this. I'm not sure the question ever occurs to him.

I'm rubbing his head and hair as I used to when he was a little boy. Without thinking I look into his eyes and say, 'Scott, are you afraid to die?' as he has been to the edge so many times.

In a loud voice he replies, 'I LOVE LIVING.'

After he is tucked in bed, I watch the candles glowing, making shadows on the wall. In my solitary daydreaming, I get lost in the shadows. It is my way of meditating, to revitalize my mind and soul.

As the numbers of volunteers increase, they present unique challenges. Most know nothing of head injuries or physiotherapy, and must be trained. So I contact a Dr Freeman whom I have read about as an advocate of home therapy. He agrees to come for a visit and advise me how I can help best. In the meantime, I become a teacher and demonstrate exercises and techniques. I show how to pick up a leg, how to push an arm, how to find and stretch tendons and ligaments, and how to support Scott's broken clavicle. I encourage and praise, but most of all I express my deep gratitude, always reminding them the main thing is that they have to feel comfortable with Scott and Scott must feel comfortable with them.

When Dr Freeman visits, he agrees with me that there is more to Scott than the doctors have taken the time to see. He says the essence of any treatment must be to keep Scott moving at all costs, constantly stimulating his brain through repetitive exercising, in the hope the brain will make new neural pathways. 'It is very hard and tedious work,' he said, 'but if you have the patience, the reward may be a big increase in Scott's ability to move by himself.' He promises to come back in six weeks, and agrees that I should continue training people.

Another challenge is to coordinate the increased numbers of volunteers. I calculate I will need ten a day, seven days a week – seventy volunteers a week, nearly three hundred in a month, although hopefully many will repeat. Overwhelmed at the sheer numbers, I continue to pass out leaflets. After my phone is installed, they call to reserve times. In addition to teaching, I now manage schedules. I tack a large sheet of paper to a wall and create a monthly calendar for bookings. Dutifully I write names in squares, but find I must adjust to changing circumstances, and my calendar fills with cancellations, scratch-outs and transferred names.

I am taping a leaflet on a post near the bus stop when I sense the gaze of someone over my shoulder. Turning about I look into the composed blue eyes of a woman in her sixties, tall with silver hair swept back in a bun and only a hint of make-up. She is dressed in an understated grey skirt and vanilla blouse with a delicate ivory brooch at her neck. Her features and countenance are lovely, hinting at great beauty in her younger days. 'Is this your son?' she asks in a firm and soothing voice. I nod yes. 'My name is Shirley. I have a few minutes and would love to meet him.'

That's how Shirley and I met. She lives in the neighbourhood and comes by often to sit and talk with Scott. She asks about his life and his dreams in the way grandmothers do best, without judgement or condescension, and works on his vocabulary and articulation. I know how Scott missed having a grandmotherly figure in his life, as my mother lived in Wales and he rarely saw her. Now I hear a lot of laughing and whispering going on between them.

When other volunteers are available, Shirley joins me in the kitchen for a pot of hot jasmine tea and we discuss Scott's progress, as well as art, music, and broader family issues. Gradually she becomes part of the Carl family. I am delighted Scott has a grandmother, and I an intimate friend.

Scott once presented Shirley with a card written in his handwriting, promising that someday, when he could, he would take Shirley to Bondi Beach and dance with her after eating crackers and cheese. A sweet dream.

Months later, Shirley confides she doesn't know why she was drawn to Scott and me. 'I've never volunteered to do this sort of thing before,' she tells me. 'I just felt I had to do something.'

In the coming months, many of my volunteers would say the same sort of thing: I don't know why I was drawn to you and Scott but I couldn't say no . . . I'm usually not a do-gooder but I had to help . . . There was no posturing to impress others, no egos on sleeves, just a selflessness that was heartwarming.

One morning I open the front door to a young man in black leather with chains on his shoulder, long, spiked, blue hair, and silver earrings. He extends a hand and in a soft, respectful voice, introduces himself as Robert. 'I've heard about what you are doing,' he says. 'Would you mind if I watch?'

My first instinct is to tell him, 'Thank you, we're fully booked.' But I hesitate. I had vowed never to turn anyone away. So I step aside and welcome him into our apartment, with its calm atmosphere of incense, candles and classical music. To the discomfort of two volunteers who are massaging Scott's arms and legs, Robert leans against a wall and quietly observes for two hours before slipping out of the door.

That night, a three-course dinner is delivered along with a glorious bouquet of summer flowers and a tape of the Bruch violin concertos, with a note on light blue stationery saying, 'Thank you for inviting me into your home. Love, Robert.' I feel sheepish that I almost turned him away. To this day, Robert is a reminder of the danger of judging people by their looks and not their hearts. I wish to write back to him, but I have no address, and can only hope I will see him again.

Many volunteers walk in the door seemingly as their muse dictates. Strangers show up unannounced and pitch in. I quickly abandon my schedule, to rely instead on whomever providence deposits at my open door. By the end of the first month my volunteers exceed a hundred, and I notice increasingly they are coming from beyond the neighbourhood.

That night I check my finances, only to confirm my worst fear. The expense of living a normal life has quickly drained the money Stefan sent from my BMW. When the volunteers catch wind of my situation, they rent a stall at the Paddington Flea Market to sell whatever the neighbourhood might donate. Word circulates on the grapevine, and soon cardboard boxes and brown bags of used clothes, books, tapes, art, furniture, tennis rackets, shoes, pots and pans appear at my door as neighbours empty their closets and garages. Twice a month, volunteers man the 'All proceeds go to Scott Carl' booth, and for the remainder of my stay in Australia, the money they raise pays our expenses.

I pray for good weather, because when it rains we have to cancel the stall and I'm inundated with all kinds of objects until the next market day, and I simply have no room for them.

Quite unexpectedly, two months later, Robert appears again. His hair is washed and trimmed. The earrings have been removed, and he is dressed in crisp, dark blue trousers and a light blue sport shirt. It is even ironed. He works with Scott almost every evening and reads to him from books on spirituality. They become good friends.

Months later Robert sadly announces he will return to school and may not have time to continue with Scott. I remember him saying he was a dropout, and I am pleased he will continue with his education, although Scott and I will surely miss him. 'Where are you enrolling?' I ask casually, to show my support. 'I'm returning to medical school,' he says with a soft smile. 'I left because I saw no point. But after working with Scott I found my purpose.'

About the time Robert enters our lives I also receive a phone call from a man with a deep husky voice. His name is Billy, and he is calling from the Blue Mountains, a couple of hours west of the city. 'I've heard about your son,' Billy rumbles over the phone. 'I'm a masseur and I have a special technique that I learned from my papa. He worked with Sister Kinney in the old days, in her polio clinic. She taught him some secret techniques, and I think they might help your son. I'd like to come and volunteer.' I give Billy my address, but he doesn't appear right away and I forget about him.

A week later I open the door to a bull of a man who fills the doorframe and blocks the light. He is huge, at least six foot three, and weighs at least seventeen stone with a shaggy mane of red hair, a full red beard with a tuft of white at the skin, hairy, muscular arms, green, deep-set eyes and a barrel of a chest. 'My name's Billy,' he says. 'I called you about volunteering, and I'm here.'

I step back as Billy, toting an old leather suitcase, advances into the room and looks around. 'Where do I sleep?'

'You're not just here for the day?' I ask, rather intimidated.

'My special treatment takes three weeks. I always move in. Can't do it any other way.' What can I do? How can I refuse such dedication? So I lead him into my bedroom and say, 'This is where you'll sleep.' He throws his suitcase on the bed, and I gather my things and move into the living room to sleep with Scott.

Standing over Scott, Billy looks around the room and asks, 'Where's your massage table?'

'I'm sorry, this is what we have,' I say.

Billy shakes his head. 'Not good enough. I have one in my truck.' He leaves and soon returns with a massage table in pieces, which he assembles next to Scott. It's homemade and very sturdy. Getting on one knee, Billy lifts Scott from his floor bed, deposits him on the table, and after pondering the situation, proceeds with his special technique. He has a particular way of kneading the muscles very actively, while at the same time rocking the body. Billy's moves are so nimble, his hands melodically smooth as his stubby fingers probe and stroke, that before my eyes he has transformed himself into an artist, a maestro of massage. I am speechless. Two other volunteers watch in quiet awe as Billy's hands work their magic.

After a week, Billy is not only working intensely with Scott, but has hung a sheet to divide the living room and started a side business taking in clients from the neighbourhood. Some knock on the door while others call and say, 'My back is hurting,' or 'I woke up with this terrible kink in my neck. Is the magic mountain man working today?' Suddenly I am the madam of a massage parlour. But I couldn't be happier. Billy is kind and compassionate and Scott shows considerable improvement in arm and leg flexibility.

After his promised three weeks, Magic Man packs up, breaks down his table, and departs as mysteriously as he arrived. For weeks after, people call to enquire about him. I have no idea when he'll be back, I say, maybe never. But Billy does return. Several months later he surprises us all with a knock on our door and continues his work with Scotty. Soon he has set up a successful local practice with his own place.

All day, every day, we are visited by a cross-section of Australian society. People drift in and out. I lose track of who is volunteering and who is there to socialize, bring food or flowers, or pick up laundry. Neighbours check in and musicians arrive unannounced. A beautiful high-school girl with long brown hair stands over Scott and plays a violin concerto. Two university students with African djembe drums pound out rhythms. A leathery fellow from the outback with a didgeridoo entertains us with three friends on flute, tambourine and guitar. When the music isn't live it's recorded – classical, meditation, folk, jazz. Day and night our little apartment overflows with music and laughter.

From a nearby Feldenkrais school an instructor volunteers his students. Another day we are visited by Sai Baba devotees, and some Hare Krishnas who normally spend their time asking for donations, but who end up volunteering and bringing wonderful food. We enlist a decathlon runner, taxi drivers, schoolteachers, plumbers, lawyers, architects, policemen, actors, nurses, medical interns, students, foreign students, teenagers who run errands, retired couples who take away our laundry and bring in meals. A woman named Rose who owns a used clothing store (called Second Hand Rose) brings me vintage clothing. I am amazed by their generosity and humbled by their gifts and blessings.

Janet, a young gymnast from England, visits Scott. She is tall and athletic, with shoulder-length blonde hair bound in a pony tail and a pink, glowing face. They become a little enamoured of each other. Janet always has a big smile and doesn't seem to have any sense of boundaries as to what Scott can or can't do. She treats him as if he's not disabled at all. She often takes Scott for long trips around Paddington (I wonder what kind of scores she gets on pushing the wheelchair). I can relax, knowing that with her muscular frame she can handle Scott and he will be safe. One of Janet's favourite amusements is to park Scott on the pavement, walk a half block in front of him, and do back-flips the length of the block until she lands on her feet right in front of his chair.

I look up one day to see Janet at Scott's side laughing about something, and think about how many attractive young women, and not-so-young women, I see Scott hugging and sharing a laugh with. Even as an invalid, he has a certain charismatic quality that women find attractive.

Once, when Scott has to go back to St Vincent's and stay in the neuro ward for three days for tests after he's suffered a seizure at home, she comes to cheer him up, turning cartwheels up and down the ward, to everyone's delight. Her energy is boundless. During that short stay, Scott is very scared watching people come in and go for tests. Some return with red marks from radiation and hair missing. Some are coming back from surgery and some do not come back at all. So for Scott, Janet's visits are quite uplifting. He is so scared that he makes me put taxi money in his drawer, in case he has to get out of there quickly when I'm not around. But that never happens.

Two world-class boxers volunteer. Frank, a lightweight from Dublin, is seventy now, but full of care and compassion, and is battling poverty himself as nobody will employ him because of his age. At the slightest hint of sadness he breaks into an old pub song with a full tenor voice. His friend, a quiet and very large man from Nigeria, is introduced simply as The Champ. Much younger than Frank, he is a one-time Commonwealth heavyweight champion. The two work on Scott's left arm to get more flexibility. It is tedious and torturous for Scott. His face grimaces, but he never complains or loses his sense of humour. 'You want to arm wrestle?' Scott chides the Irishman. 'I'm not sure you're up to it, so I'll use my bad arm to make it easy on you.' The Irishman laughs joyously and eggs Scott on. 'Come on now, mate, you can't go through life without a good left jab.'

Two little boys, five and seven, arrive with their mother. While she talks with Scott and stretches his right arm, I ask if they would like to rub lotion on his feet. They reply, 'Can we really?' I say, 'Of course,' and give them the bottle of lotion, and leave them to their own devices. Too often, we shield children from life's ills and infirmities, and in the process we deprive them of the skills and compassion needed to cope. It is a shame how we lock children out when tragedy appears. They should be allowed to share in these situations, so they learn not to be afraid of sickness or death. It is mainly the unknown that is scary for them. With Scott, I saw children learning to exercise their natural compassion and healing energy.

Many volunteers bring their young children who laugh and giggle as they romp through our small apartment and play outside. Fathers bring their babies and balance them on Scott's stomach. He loves having the babies the most. He strokes their heads and it takes his mind off his pain while their parents pull at his legs. After all, babies are pure love.

A young Israeli woman named Haiki appears at our door. She is short and stout with dark, thick, curly hair around a cherubic face. Haiki is a medic in the Israeli army and informs me she possesses an intuitive sense of how to work with disabilities. She is drawn to Scott and when the other volunteers leave and I am in the kitchen cleaning up she lies on her back next to Scott and they talk of sex. I shut the kitchen door to leave them alone. I am sure their relationship is just talk, but sometimes mothers learn things they should forget.

Keith walks in unannounced and introduces himself as an osteopath with spare time who wants to help. He is slightly built and about thirty-five years old with over-the-collar blond hair and blue eyes that brim with enthusiasm. I introduce him to Scott and he immediately begins a neck massage treatment. As he works, Keith asks my son about his injuries. 'I don't remember how I was injured,' Scott explains briefly. 'But I'm getting much better.'

'That's wonderful,' Keith replies. 'Miracles do happen, don't they?'

Scott laughs. 'Maybe so, but I don't live on 34th Street.'

Jonathan comes when he can to take Scott for afternoons at the beach. One day, rolling Scott's wheelchair along the boardwalk, they pass two young women. Reaching out his good hand, Scott pinches one on the bottom. Whipping round in surprised anger, and confused by the sight of an invalid in a wheelchair, she turns her wrath on Jonathan, who wheels briskly on in embarrassment as Scott convulses with laughter.

Scott wants to put his feet in the ocean, but wheelchairs do not go through sand, so we have to devise another way. With Jonathan and Rollie's ingenuity, we cut off the legs of a chair and nail poles in their place, put Scott on the seat, tie him in with Ace bandages, and bear him like a maharaja across the sand to the water. After we lay it down in the ocean, a big wave comes and wipes him out with sea spray. Scott can't move and he doesn't care; he just laughs. I think he feels safe strapped to the chair. We also carry him to the rocks and put a fishing pole in his good arm. To everyone's surprise, he catches a little fish. Luck is on his side. By summer's end, Scott's face fills out and shines with a healthy copper glow. Unfortunately, those outings become few and far between as Jonathan's visa expires and he and Ulla depart for Denmark, leaving me to continue my crusade.

I receive a call from the Probation Department, asking if I could use the help of an osteopath, as they have one who could come every day. He is on probation for financial impropriety. I don't care and eagerly say yes. I laugh to myself each day when I have to mark his card to say that he has been there all day. He is a gentle soul. I can see where he would have money problems. He lives in the moment and only his work matters. Even after he is off probation he still comes, almost every day. He works wonders.

Three housewives become regulars. One is mired in an unhappy marriage, but can't break out as she's been diagnosed with cancer and can't work. The second has a schizophrenic son and a husband who's just left her. The third is raising four children alone. They quickly bond with Scott and with each other. Like Scott they are not bitter, they are just trying to get on with their lives. They initially arrive individually but soon carpool together and become fast friends. It takes an hour each way for them to reach our apartment. I found that level of commitment very moving. The women work as a team to exercise Scott's arms and legs, rolling him on the bolster.

One day I watch them turn him over on his stomach and bend his legs back to stretch muscles. When they finish, in the process of repositioning his body, they lift his upper body. Instinctively Scott thrusts his thighs forward, and quite suddenly he is upright on his knees. Stabilized and encouraged by two of the women, he awkwardly puts one knee forward, shifts his body, and slides the other knee forward while they hold him up, one on each side.

I catch my breath. Slowly and haltingly, Scott is walking, if only on his knees. He cannot balance, he cannot take more than a few steps, but he possesses some control of his thigh muscles and his hips. Might Scott someday stand on his feet? One leg is longer than the other, and one bends at the knee, so it is a little shorter. Haven't I just a few minutes ago seen him walk on his knees with help? If he can go from a coma to balancing on his knees, surely he can make another leap forward. All of a sudden the possibilities seem limitless.

He has a rag doll someone made from wool and rags so he could stretch his fingers around it as part of his therapy for his left hand. At the end of the day he mimics us, becoming the physio trainer telling the doll everything we say to him repeatedly: 'Stretch that leg, hold it, you know you can do better, you know you can do it.' I wonder what is going through his mind. Sometimes he calls me Hitler's Wife, laughing, making me get down and do push-ups. 'One more,' he says, 'you know it's good for you.' Sometimes he jokes, 'I'm going to get out of this place and go to the army; I'd be treated better there. Maybe it would be better in basic training.'

I also listen to him taking his aggressions and frustrations out on the doll. One time he throws it on top of a cupboard and says, 'You're staying there for a week and not coming down.'

Whatever anger he feels, he never carries it into the actual therapy. If it is an older person working on him, and a lot of pain is being inflicted, he will sometimes pick up their hand and kiss it as a way of saying it's okay. He never gives up. Each step of the way his courage never falters.

'Isn't it Saturday tomorrow? Will I get the day off?'

'What do you think?' I reply.

'Okay, okay, I get the message,' he says.

Sometimes when we talk during the middle of the night and he can't sleep, he'll say, 'I have a pain here; will you massage it with lavender oil, make the pain go away?' as if I have that power. Later, he'll fall asleep with a peaceful look on his face. I wonder where he goes in his dreams.

Another time when he sent me a birthday card he wrote, 'I love you, you are the best mom in the world. I love how you take care of me, but I hope you never get sore like I am.' When I asked him about his pain, he replied, 'It won't be for ever.' When I asked him what he missed most, he replied, 'I miss running. I miss my buddies and friends in America that I played ball with. I miss my roommate Niall from Copenhagen, the sports we did together, flirting with the ladies and working at Burger King while planning the next step of our future.'

One of my regular volunteers is Brendan, a young physiotherapist from St Vincent's who used to stop by Scott's room. He appears at our door in his white coat, asking if he can be of help. He is of modest build with short brown hair, narrowly set brown eyes and a wide smile in a slim, pale face. He is also very British, but to his credit he is willing to bend the rules. Inspired by Scott's walk on his knees he says, 'I believe it's critical to try and splint his legs and to keep his spine straight.' So Brendan and I build what he terms a sentry box, a three-sided wooden box that Scott can sit in with his legs forward. Once he is seated, I pad him up so he can't slump, and put a padded wedge between his thighs to drive them apart and to stretch and build his inner thigh muscles – a necessity if he is ever to stand. I also paint a chessboard on top of the table that keeps his legs open, so he can amuse himself by playing chess while he stays in the box for an hour.

Scott's leg is still bent at the knee and one day as Brendan and I sit at the kitchen table discussing therapy strategies, he looks at me with a devilish glint in his eye. 'I know what to do,' he says. 'We sneak him into the hospital, get his legs as straight as possible, and put them in casts to stretch his tendons.'

'Is that possible?' I ask. 'Won't we be caught?'

Brendan smiles. 'Trust me, I know these people. They won't suspect a thing.'

In preparation for the splinting, we intensify our efforts to loosen up Scott's leg muscles and tendons. I set a schedule of a solid week of six-hour days of pulling, stretching and holding Scott's legs for fifteen minutes at a time, with volunteers working in one-hour shifts to get his muscles stretched and pliable before they are cast in plaster.

We will have to transport Scott to the hospital, and once his legs are locked straight in casts, we'll need an even larger car to get him home. Fortunately, one of the volunteers offers his station wagon. On D-Day it appears. We move Scott up the stairs and into the back seat and are off to St Vincent's. Brendan borrows a wheelchair and soon we are in that part of the orthopaedic ward where the casts are set.

True to Brendan's word, the staff pay no special mind, believing Scott has been transferred in from somewhere. On the casting table the technicians lean into his knee, causing Scott to grimace in pain, until each leg straightens as far as possible, and they apply full leg casts.

The next trick is to get him home with the plaster still wet. Scott is back in the wheelchair, but he has picked up front-end weight, and his thick white legs stick straight out at a right angle, making it difficult to manoeuvre in the hall. 'Normally,' Brendan says with a wide grin as we prop and shore Scott's legs, 'people with both legs in a cast are kept in the hospital. But that would be pushing our luck.'

At the flat, volunteers help Scott down the stairs and onto his bed where he lies in considerable pain as his straightened legs pull against the frozen tendons behind his knees. All I can offer is Tylenol. After three days his flesh swells and turns red around the cast, and I'm fearful of an infection. What have we done? I am haunted by doubt and worry. I call Brendan.

'Does he have a rise in temperature?'

'No,' I answer, 'but he's in a lot of pain.'

'I told you he would be,' Brendan says. 'Give him more Tylenol. They have to stay on for seven days or it won't work.'

During those agonizing days, Michael, a Maori from New Zealand, spends hours at Scott's bedside to take his mind off the pain. Dressed in psychedelic colours, Michael has a handsome South Seas look with an engaging smile and great warmth. He hangs a small animal-skin pouch around Scott's neck and tells him it contains a sacred coin. 'You are on a special journey,' he solemnly tells Scott. 'When you travel you should always have money.' Michael eventually tells me he has been inspired to enrol in physiotherapy school because of Scott, so he can be better at helping others.

At the end of a long and painful week, especially the endless nights, Brendan and I return Scott to St Vincent's where the casts are sawn off. The stretching has worked and Scott has more flexibility in his knees, but at the price of considerable loss of skin. So I face a new problem: healing the skin on Scott's legs. Back home, I call Keith and ask for treatment. Keith arrives and rubs drops of aloe vera squeezed from one of my house plants into Scott's raw skin. Then he brings out his needles and gives Scott a full acupuncture treatment. The treatments seem to help, and within days Scott's skin is repairing itself.

About six months have passed since I took the apartment, and nearly one hundred and twenty volunteers pass each week through my door. Scott shows great improvement from his six-hour days of therapy. I'm content with my life, enriched by our friends and much laughter. But suddenly I am rudely reminded of reality. Once again the system, like a wolf lurking in the woods, comes knocking. A letter arrives from Immigration informing me that I am in Australia illegally and I must check in, answer questions on Scott's health, and fill out new forms.

It turns into a lengthy process. Trusting Scott to my volunteers, I wait at Immigration for hours before a case officer tells me to return in two weeks with the new information. After visiting Immigration several times only to be interviewed by the same man who asks the same questions, I blow a fuse and complain bitterly to the poor man, who can say little more than, 'I'm sorry, love, but we have to have some sort of procedures.' When I return home, I tell my volunteers of my frustration. I am sure I will have to leave the country.

That night, after Scott slips into sleep, I step out the back door to breathe the dark air. It is a clear and lovely night. The moon has not yet risen, and the stars dance above me, twinkling specks of diamonds in a charcoal-black sky. My mind is drawn back to that little girl in Marble Hall who trusted her stars. And I can hear Ted, my wayward sea-captain Dad, say as he did so often, 'Trust in your stars, Glennie. Those stars have saved many a drifting man.' Whenever I have faltered from life's course and my future seems uncertain, I think back to Dad's advice and turn skyward for guidance. What do my stars tell me tonight? What course shall I follow?

What I do not know is at this very moment my dear friend Shirley is launching a campaign of rescue. Across Sydney, hundreds of phones are beginning to ring.

From Hold My Hand: A Mother's Journey by Glenys Carl. Pan Books, Pan Macmillan LTD, England, 2005. All rights reserved.

Posted on BrainLine November 3, 2008.