Page Utilities
Glenys Carl, Pan Books (page 3 of 13) Page 3 of 13
'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.
From Hold My Hand: A Mother's Journey by Glenys Carl. Pan Books, Pan Macmillan LTD, England, 2005. All rights reserved.
