‘Is he right?’ Mummy had obviously not had the minutes she would need to complete the task, and Sarah had not seen the question, but Daddy’s maths is good.
‘I have no idea,’ exclaimed Daddy, taking the baseboard and counting each square of four. ‘14 times four is 56.’ Incredulity wiped out scepticism, as Daddy’s jaw momentarily dropped. ‘How do you do this, Jonathan?’ Daddy seemed genuinely perplexed.
It was my turn to be confounded when Mummy made a pattern for him, and he couldn’t tell us the number of studs in three seconds. But my father knows everything! If only I could ask him, ‘How can you not do it?’
Thus followed a series of mental maths challenges, whereby I was verbally asked: 7 lots of 8, 9 groups of 15, 20 lots of 18. Why did Mummy and Sarah always check my answers on the calculator? And why was it so funny when I got it right? Apparently, there is even a symbol for this – ‘x’. It’s called multiplication.
But I was reduced to asking them these questions in my head. For while I could easily use my number board, my spelling board was only used for my daily spelling test and as a little ‘abc’ option on my writing board. Before breakfast every morning, we started playing a game where I was given a word to spell on my spelling board: Mummy’s idea to help me learn the placing of letters on the spelling board. Navigating around my spelling board took time. If only the alphabet was made up of just ten digits like my number board! With so many letters, I needed to remember where each one was located, what colour it was, and where the colours were placed.
This is how the spelling board works:
The 26 letters of the alphabet are organised into 5 grids of letters, and each letter is surrounded by one of five colours – blue, red, green, yellow or purple. To select a letter, I needed to move my eyes twice across the board – to a group of letters and to the corresponding coloured square. For example, if I want to say ‘Hi,’ I look at the grid the ‘h’ is in, and because the ‘h’ is green, I then look at the green square. Next I look at the grid the ‘i’ is in, and because the ‘i’ is red, I then look at the red square. My communication partner points where I am looking, and sounds out the letters. Bottom middle is my space bar, and the tick and cross are my ‘yes’ and ‘no’, with the cross doubling up as a delete function.
With five carers and Sarah and Mummy as communication partners, there were eight of us learning how the spelling board worked! In my wheelchair I find it slower; as my head moves around, carers have to dance with me, following the movements of my head with the spelling board. In busy environments I can’t resist the temptation to see what is going on, resulting in less spelling and more dancing. But Mummy is the ultimate in comfortable seating; while on her knee, I am at my optimal spelling speed.
During my writing time, it was a daily toss-up between the frustratingly limited word options I was presented with on the writing board – vocabulary limited to words used by seven year olds – and the slow, complicated precision required by my spelling board. With my intense dislike of getting anything wrong, I was not ready to use the spelling board for more than an occasional word at a time.
Gradually, as time progressed, the satisfaction of spelling out the exact word I wanted to use outweighed all the other factors: my writing board’s laborious system that only offered pre-chosen words, the exactitude required by the spelling board and the time it took to construct each word. Above all I am a perfectionist, and the spelling board was my gateway to the perfect word fit.
Meanwhile I continued my story with Alexander, ‘Egged On’. So far Alexander and Jonathan had endured a dangerous sea crossing to capture some enemy eggs. Today, I had a particular word in mind for my story. A descriptive word, a sonorous word. The perfect word.
For as long as I could remember, Mummy had read to me: Bible stories, funny stories, short stories, The Chronicles of Narnia. For days, weeks and months we had curled up in a hospital bed together and plunged ourselves into a novel. Immersing myself in a story is the most enjoyable, wonderful escapism; books have nourished my mind and prevented mental decay during my years of silence. Trapped in cerebral palsy I run within the pages: skipping, laughing, exploring. Plunging myself into the adventure of new tales, I have inhabited the scenes of authors’ pictures and woven them with my imagination. Words have been my portal to another world. And now the mantle was passing on to me.
During the nine years of being effectively locked in by my severe cerebral palsy, words and phrases had been banked while my mother read to me. Unable to develop the physical skills of my peers, maybe my mind had more room for academic learning.
Picking up the spelling board, Sarah’s finger pointed to where my eyes were looking. Sitting on Mummy’s lap, our bodies remained still as Sarah’s finger danced to the rhythm of my eyes. Following my lead, we slow-waltzed around the board, synchronised to the music of the word in my head. At first we were like clumsy teenagers trying to learn – stumbling, slow and stilted.
‘Jonathan, today you’ve written: “Tired from slaying the ships enemies they towed” – what do you want to write next?’ Mummy enquired. She had already been surprised by the word ‘slaying’, as it wasn’t even an option in the verb section of the big black folder.
As the duet continued I spelt out an ‘m’ then a ‘y’. Because the process was so exacting and tiring, and because I wanted to draw out the suspense, I closed my eyes. After the usual cajoling to open them, I started to enjoy the ensuing conversation:
‘Did he put a space after the “y”?’ Mummy needed to know, as she was also typing what I wrote into the computer.
‘He hasn’t yet, but I expect he will when he opens up again. I can’t think what else he would want to write beginning “my”.’ Sarah obviously had no idea of the word I was crafting. Before they started chatting again about the fate of the near obsolete folder that brimmed with many hours of their dedicated input, I opened up – ready for play to recommence.
‘My… “r”… “i”… “a”… “d”… “s”.’ Mummy articulated each letter of the word rally, but Sarah was so engrossed in mirroring my eyes with her finger she had lost the word.
‘Myriads.’ Mummy looked at Sarah, who stared back at her, stunned.
Their silence heralded the beginning of the end of mine.
It took Mummy one more day to realise that now I could spell everything I wanted to write, I could also spell everything I wanted to say.
Now it was my turn to be the custodian of the power of words. My challenge to capture delicately the image and bequeath it words that let it breathe. Like a bird let out of its cage, the picture that words can generate was free to fly in my reader’s mind and assume a new life of its own.
CHAPTER FIVE
A Family of Haikus
Imaginative
playmate, soulmate, laughing fun –
Pretty Susannah!
Unconditional
loving, singing, full of joy –
Cuddly Jemima!
Intellectual
mantime,cavetime, piece of quiet –
Faithfully Daddy!
Incomparable
mother, teacher, one with me –
Devoted Mummy!
WHAT DO YOU ASK YOUR NINE-YEAR-OLD CHILD, WHO CAN NOW TELL YOU ANYTHING? No need to predict what he wants, no need to try and interpret his smiles for pre-set answers – he can just spell it out for himself. Anything I asked, Jonathan could tell me. As I sat supporting his body on my lap in our playroom, with the girls running in and out, and Christopher cooking in the kitchen, I wondered where to start. Sat opposite us was a carer, spelling board poised – expectant, waiting. Now that Jonathan, the carers, Sarah and I had learnt how to use the board, after nine years of silence, so many of my questions had evaporated into the mists of time, and all I could think of were questions I already knew the answer to.
‘What is your favourite ice-cream?’
‘Choc.’ The spelling was still slow and deliberate.
‘Chocolate. We kne
w that already, Mummy. Why don’t you ask him a question we don’t know?’ Susannah interjected before skipping out of the room to continue her game with Jemima.
‘I know, Jonathan, how about this one. What is your earliest memory?’ Again, I felt I probably knew the answer, but I couldn’t be sure.
‘Susannah out of you,’ Jonathan replied.
(Transcripts of this conversation and others like it read now like someone who is learning a foreign language, where the meaning of the words is present, but the syntax isn’t quite right. A child’s attempts at conversation from the land of silence.)
Ever the diplomat, Jonathan evened this out by answering the next question (what did he remember about our previous home?) with a mention of not having ‘kind sister Jemima’. In the very early stages of my pregnancy with Jemima, Jonathan had once again been very ill, and so – partly as an incentive to him to pull through, and partly because if he didn’t, I wanted him to know about her, even if he never got to meet her – she had become our shared whispered secret. When the secret became a real baby sister, he was as delighted with her as he had been with Susannah. In the early months Jemima and Jonathan would often fall asleep together, with Jemima lying on him, or next to him, but usually with their faces turned towards each other.
General memories seemed a good line of questioning for Jonathan. What he could remember from his early life was illuminating in showing how his past experiences had shaped the present.
‘What can you remember about being in hospital, Jonathan?’
‘I have to get better,’ he spelled out.
‘What did he say?’ It was hard for Christopher to follow the conversation from the other room, above the noise of sausages spitting in the pan. ‘I know.’ Daddy’s turn for a question now. ‘How did you feel in hospital?’
‘Ill,’ was the response.
We all laughed, as Jonathan managed to convey in a single word that silly questions get silly answers. Acutely aware that the phrasing of the questions was important, I knew it was crucial not to lead him to certain answers. After essentially being restricted to yes or no answers all his life, I now wanted to encourage as broad an answer as I could.
‘What is important to you?’
‘Mummy, Jesus, Susannah, Jemima, Daddy, sisters.’
Like a walk with many paths, we were experimenting, going down different avenues to see where it would take us and what the view looked like.
‘Jesus?’ I asked. After all, he had been surrounded by Christians all of his life.
‘S… e… e… n.’ Jonathan spelled out.
‘Seen. What have you seen?’
Like the atmosphere before the curtain draws back for a play, there was an intensity in waiting to hear what he would write next. Suddenly this had transformed from a chit-chat to something more profound, and the atmosphere reflected it.
‘His house.’
‘When did you see his house, Jonathan?’ My voice trembled. What did this mean? What was he talking about?
‘Small, most meet me is when my in pain. His men met my parents. My racing, I up trees.’
Opposite me the carer who had been with us for many years, through hospital stays and intensive care admissions, sat with shining eyes, and although it was warm, I could see the hairs on her arm were standing up. As the conversation was relayed between the kitchen and the playroom, and again to the girls, we all spent our supper time trying to understand what Jonathan could mean, while he sat beside us, beaming a smile of relief. A smile of, ‘I’ve wanted to tell you this for so long…’
During the following months, this was a topic of conversation that we would revisit, carefully, as if it was a fragile, precious experience that we mustn’t handle too clumsily, for fear we could impose our growing understanding on it.
Other questions we asked didn’t get the answer we expected. When Jonathan started to be able to talk to us, I assumed, like most people, that it must have been the most frustrating thing to have been unable to tell people what he wanted. Although Jonathan didn’t seem frustrated, I imagined that he hid it well beneath a veneer of contentment. One day we were in the kitchen at breakfast time, and as usual I had got him ready for the day ahead. What frustrated Jonathan most?
‘Having my face washed,’ he spelled out, and gave me an award-winning grin.
Typical boy!
When Jonathan began using the spelling board, our family relationships shifted and altered; at home it was his time with Christopher that changed the most. Silence has always characterised the time that Christopher and Jonathan spend together – silence, it seems, is a very necessary component of ‘man time’, so even now that they could have a conversation it didn’t seem on the outside to change much. But Christopher has an academic’s instincts, and now they shared time with each other more as equals, looking things up together, discussing what they had found out.
Now we had a child who could ask for anything he wanted. One such conversation sticks in the mind.
From the week before Susannah was born we have had day carers to help me, paid for by the insurance award from the car accident; an extra pair of hands to help with three small children and all the equipment and extra needs that Jonathan has. Much of what Jonathan has achieved would not have been possible without these carers working hard behind the scenes – making up feeds, medicines, filling up oxygen tanks and accompanying Jonathan to school. They have all mastered the spelling board. Night carers have helped me to sleep, so essential for functioning well in the day. Claire has been with us from the beginning, and even brought in her tiny baby to meet him. This fragile baby looked far too small to endure one of Jonathan’s spasms, so, although he loves babies, I said that he couldn’t hold him, as his sisters manoeuvred themselves onto the sofa to receive the tiny bundle. Spelling was a relatively new skill for Jonathan, so, keen to have a chat with his carer, we got the board.
After a few pleasantries, Jonathan said, ‘I need a brother.’
Having gone to the effort of spelling it out, letter by letter, surely Mummy would now give him what he wanted!
As the new mother left, Jonathan moved onto Daddy with his question, along with his solution to the fact that we were not considering having another child: ‘Foster.’ Still not taking no for an answer, he turned to his carer on the other side of the spelling board. What he didn’t know was that she had mentioned to me that she was very unlikely to be able to have children of her own.
‘Pippa have one,’ spelled out Jonathan.
Nervous laughter from Pippa the carer; embarrassed closing-the-subject chatter from us. A year later Pippa asked me into our sitting room for a meeting…
She was pregnant.
Over the following months we started slowly to ask Jonathan more questions, always trying to be careful never to ask leading questions, but keen to understand what we could. It takes a lot to make me speechless, but many times I have been left without words. One day he gave a detailed description of the moment we had intercepted a police car on our way to Bristol when he collapsed on dialysis – specifying where Christopher and I were, and what was happening. But it was his description of his time in the garden that blew us away the most.
Chantal Bryan
CHAPTER SIX
Baking Beauty
Filling, beating, stirring, pouring,
Baking beauty life restoring,
Dripping goodness love in sharing,
Aromatic health repairing,
Pleasant parcels held with pleasure,
Tantalising tastes to treasure.
AT LAST, I COULD TELL MY FAMILY ABOUT MY TIME IN THE GARDEN. At last. This was the one early memory Mummy knew nothing about. For nine years she had shared every aspect of my life; when I was admitted to hospital, she effectively became an inpatient with me, only leaving our bed to go and get some food. At home, when I wanted to play, she sat behind me supporting my body and helping my hands to manipulate the toys. If I was tired, she read to me; if I was excited, we pla
yed instruments; if we needed some fresh air, she took me into the garden or for a walk. During playdates, while other mummies chatted and drank coffee, my mummy carried me through the soft play area so I could keep up with my friends. If I went out to a group, she had to go with me. But I had visited the garden on my own. My most significant, wonderful memory had never been shared until now.
Describing what is beyond description is almost impossible. How I got there? I do not remember. However, my memory of my time there is as crystal clear as if I had visited yesterday. Since sharing this part of my story, my parents have been helping me understand the events around my experience. When an intensive care consultant tells you that your child is being put into an induced coma in order for the ventilator to work as best it can, you know it is serious. But when you enter intensive care and find every consultant and doctor on the ward in your child’s room telling you that it could go either way, you know this could be it. While my body hung in the balance, I was already tasting what it was like on the other side.
Alive. I had never felt so alive. Free from my crippled, dysfunctional body, I ran. Ran! Fresh, verdant grass beneath my supple feet. A warm, soft breeze caressed my face. Sounds of children’s laughter mingled with birdsong. Freedom!
For the first time, I could see clearly – like the murkiness had been blown away to reveal abundant meadows of spring flowers swaying their heads under the mellow sunlight. As I stretched my body to its full height (my scoliosis had elongated and vanished altogether), I realised the dragon cerebral palsy had been banished from the lair of my body. All my life this monster had subjugated my body to painful spasms, distorting and writhing my frame, breathing fire under my skin, stealing my voice; and now it was dead and defeated forever! With the sibilance of my oxygen silenced, I inhaled deeply, the fresh air vitalising my new body and filling my soul with joy. Swinging my free arms, I sauntered through an orchard; the trees, laden with delectable fruit, stretched beckoning branches towards me. Savouring every moment, enjoying the harmony between my perfect, new body and my soul, I was whole. Groups of children were playing near the trees, their mellifluous voices drawing me closer. Happiness was not merely a facial expression for the people I met; joy exuded from them, and the atmosphere was saturated in a deep, contented peace. As I neared them, I wanted to ask where I was. And I could! I just thought it and spoke.
Eye Can Write Page 6
