By Cheryl Koenig.
‘Please God no, please God no!’ I found myself saying over and over in my head, as I ran as fast as I possibly could toward the T-junction at the end of our street. Seconds before, the frantic ringing of the front door bell had broken the usual tranquility of a Sunday afternoon. As I approached the door, I could suddenly hear a panic-filled voice calling out my name. I felt a sudden rush of anxiousness, yet I was still unprepared for the terrified appearance of our eleven-year-old neighbour Josh, with his arms flailing about, eyes wide with shock and voice almost hysterical, screaming, ‘Cheryl — come quick! Jono’s been hit by a car!’
‘What?’ I cried out in disbelief. ‘Where Josh? What happened?’
I didn’t even wait for his reply, but instead ran out the door and straight past Josh, leaving my other son Chris still inside watching television, and the Mexican dinner I had been cooking still simmering on the stove. As I approached the corner of our street I remember thinking to myself, “Why can’t I hear him crying? He should be crying!”
It was then that I saw my husband Robert. With a look of sheer torture and panic drawn on his face, a look forever etched in my mind, his hands were held above his head as he ran into the house on the corner of our street, screaming, ‘Help me, help me! Ring an ambulance!’
It was a Sunday, a lovely autumn Sunday, with amber leaves strewn across the lawns of the well-kept houses in our street. A day spent at home, doing ordinary things, family things, Sunday things, together things. Jonathan, then aged twelve, had spent most of the day doing ‘normal boy stuff’, playing outside in the mild warmth of the autumn sun with his brother Chris, aged ten, and Josh. They very rarely ventured past the corner of the street, and if they did they knew to let me know first.
‘Mum,’ Jonathan had said only hours earlier, in his husky yet confident tone, as he munched on a toasted sandwich, ‘I love days like this, when we don’t do anything, or go anywhere, just stay home all day. They’re my favourite days!’
Simple words, yet ironically they could have been his last.
I kept on running and finally saw what confirmed my, and undoubtedly every parent’s, worst fear: my darling boy, my precious Jonathan, lying crumpled like a rag doll on the road. As I carefully knelt down beside him, I knew straight away it was very, very serious. There was an enormous amount of thick, dark-red blood oozing from his nose and mouth. He was on his right side and his eyes were open. I stroked his face and spoke softly to him. Something inside me told me to be calm and not to cry, though every fibre of my being was trembling with fear. I tenderly picked up his limp right hand and said, ‘Mummy’s here darling. You’re going to be all right. Just keep breathing. That’s right, in and out, nice and slow. Good boy. Just keep breathing. That’s right, my baby, you must keep breathing, don’t stop darling.’
I held his hand and kept speaking to him, silently praying for the sounds of an ambulance siren. He kept breathing steadily for a few minutes, but then suddenly he vomited. It was then that I began to get truly frightened because his breathing became laboured and his eyes kind of glazed over. I knew I was losing him! I stood up and asked if anyone from the circle of people who had now gathered around us knew CPR. A sea of faces stared back at me, some in horror, others in pity. And then, just as I was about to lose all sight of my sanity and scream in desperate fear of what was about to happen, in the distance I heard a siren. I turned and looked down the street and saw the approach of bright flashing lights, standing out against the backdrop of the golden glow of the sunset. For some reason I shall never forget that sunset and the ominous feel it had — it was as if it could be setting on our lives forever …
That was 20 years ago, but when I go there in my mind, it feels like yesterday. In May 1997 my beautiful boy who could play three musical instruments, run like the wind, and was at the top of his class academically, was hit by a car whilst crossing the road to come home. Initially he had a Glasgow Coma Score (GCS) of 3 and we were told many times over the ensuing three weeks in Intensive Care – from nursing staff to neurosurgeon – not to expect him to live through the night.
During those weeks of emotional anguish, sitting helplessly by his side as he clung to life on a ventilator, watching with horror as numbers plummeted and alarms shrilled, we thought our prayers were finally answered as he defied the odds to survive. Only then were we confronted with the daunting realisation that not one muscle in his entire body functioned; his eyes were fixed to the right, he couldn’t walk, talk, or even swallow – his head hung forward and dribble poured from his mouth. Somehow we stumbled through those nightmarish weeks, coping only because we knew we had no other choice, until the point when he was pronounced “medically stable”. With that knowledge came overwhelming feelings of relief; but what we didn’t know then was that we were in for a marathon – years and years of intensive daily therapy.
Based on statistical outcome measures for brain injury, as Jonathan was in a coma for approximately six weeks, and worse, in post-traumatic-amnesia (PTA) for about ten months, we were told he may never walk, talk or even eat again, and were given a very poor long-term prognosis. Doctors were not sure “what, if any function, he would ever regain.” To hear those words was like the falling of a guillotine, severing what little hope we had left in our already crushed hearts. And ‘hope’ is such a powerful emotion – one we should never lose sight of – because very often ‘hope’ and it’s companion ‘faith’ amount to all there is left to cling to when thrown into sudden medical trauma or adversity of any kind. I realise that clinicians are reluctant to give anyone ‘false hope’, due to so many unpredictable factors, however I believe there needs to be a distinction between ‘false hope’ and ‘false promises’ – and families and carers need to be given due credibility for understanding the difference. Clinicians also need to realise that sometimes not only their language, but also their actions or mannerisms, can impart a ‘no hope’ scenario, and this can be just as devastating to already desperate families.
Probably one of the most fortunate occurrences of Jonathan’s life happened during the first week on the Neuro-ward. Robert and I were sitting with him one night watching television when, on one of the current affairs programs, a story appeared about a brain-injured teenage boy who had been dismissed by the medical profession as vegetative, only to recover an amazing amount of function due to the extraordinary work of one man, Dr Ted Freeman. Within a day or two I had Dr Freeman’s instrumental and groundbreaking book, The Catastrophe of Coma — a way back. I began reading obsessively, soaking up the information like a sponge. Within another day or so, I was able to speak to Dr Freeman himself. At his suggestion I began keeping a diary, a record of every new thing Jonathan did, however small. Dr Freeman said, and he was right, that not only would it provide me with written information and a vital record of all that would happen in the ensuing months, but that in times of despair I would be able to look back and see how much improvement Jonathan might have made. I finished reading the entire book in a matter of days, and on day 27, Robert and I commenced — unbeknownst to the hospital staff, as we suspected they might not approve — Dr Freeman’s strategy for Coma Arousal Therapy (CAT).
Dr Freeman’s analogy is to imagine yourself sound asleep in bed in the middle of the night. Far away you can hear someone knocking. You are too comfortable in your bed and prefer to just stay there. But the banging gets louder and louder until it forces you to wake and answer the door. This is what it is like to be in a coma. As a carer, you must do everything you can to wake the patient — the earlier the better — to improve their chances of a good long-term recovery. Unfortunately, in the confines of a hospital ward it is very difficult to be loud; however, one of the most important pieces of advice that I believe is essential to bringing about recovery from coma is this: do not allow your loved one to sleep the day away! Some rest is necessary but too much is the enemy. You must do everything in your power to stimulate and rouse the patient, and you must be intensive and committed about it!
As instructed I kept a journal and I began outlining every new thing Jonathan did each day. What happened each day may have seemed trivial, but in actual fact it was the return, minute by minute, of our son Jonathan to the land of the living. I had no idea at that time that my emotional bits of scribble in an exercise book, would go on to form a manuscript, then a published book: Paper Cranes – A Mother’s Story of Hope, Courage & Determination, Exisle 2008; which has offered hope and inspiration to thousands. I felt compelled to write about our journey, as during my darkest days, it was other peoples’ experiences that I wanted to read about. What had they done? How did they survive the unimaginable pain of losing the very essence of their precious child? I was a desperate parent, faced with a desperate situation, who was in search of a map and a guide out of a swirling dark abyss. Naturally we were given some clinical literature on statistical outcomes and prognoses etc., but what doctors didn’t ‘get’ was that I didn’t see Jonathan as a ‘statistic’ – he was my 12 year old little boy, with the world at his feet, who in a split second had his destiny drastically altered.
So at first it was extremely distressing to observe Jonathan struggle through each day of his rehabilitation programme. The tone in his muscles was so tight, he would moan in pain whenever we tried to stretch his arms or legs. To us it seemed like one step forward and two steps back the next day. But, as the weeks turned into months, ever so slowly the single step forward turned into two, and the steps backwards became less frequent. Little by little some physical function and mental capacity began to return. With his improvement, our emotional stability also returned, but we were soon to discover we were not out of the woods in that department either.
After five months in hospital we went home. Yes it was “home” – but we very soon realised that home would never be the same again. Life would never be the same again. We threw ourselves into the mammoth task of rehabilitating our son. For most of the first year at home we had no time at all to deal with feelings of grief or loss. As Jonathan’s condition improved he gradually resumed his place in the community, returning to his former high school and participating in more activities outside the family home. With this progress came the realisation that for us to survive and function in the community as a family, we had to find a new foothold in a very different world to the one we had previously enjoyed. This was a world filled with adversity, inequity and unexpected confrontations and hurdles. We had to accept that precious dreams had been lost and press on regardless. On top of that we also had to deal with the attitudes of the ignorant. The largest burden came not from the six-hours-a-day of home-based therapy programme, nor from the countless hours of physical care and assistance that Jonathan required; instead it came from the weight of insensitive remarks and preconceived notions of others. So for several years following the accident life was a huge challenge for our little family. For me, the change was pervasive and overwhelming, partly because I was reluctant to relinquish my attachment to the ‘perfect’ life we had once shared as a family.
Today, however, I have accepted this new reality. We are once again a happy family having adapted, albeit slowly, to our new lives. From a personal perspective, I have been enriched and enlightened and have grown spiritually as a direct result of caring for my son and dealing with his residual disabilities on a day to day basis. Yes, I am a ‘Carer’; though my role has changed over the years in parallel with Jonathan’s needs as he continues his relentless quest for physical improvement. I wear many hats, as do most people who find themselves in the role of Carer. At home I am his physical trainer, speech therapist, social secretary, tutor, counsellor, personal-care attendant etc. etc. Outside the home I am his mode of transport, his aide in educational courses, and by and large his navigator and assistant – both literally and figuratively. Beyond all of these roles, I am his mother and he is my best friend.
So it goes without saying that surviving the early impact that your loved one has suffered a brain injury is extremely difficult. When you first come out of the devastating shock and the enraged denial, the real pain and heartache are enough to threaten your very existence, and if you let it, the resentment can destroy your soul. The sudden change of life as it once was, and the partial loss of the very essence your loved one, is very, very significant. What can you do? You have only two choices – you can spend your life mourning the fact that your dreams are now shattered, or – you can do whatever is within your power and capability to change what can be changed, without forsaking the insight to accept what cannot.
Our family was able to carry on by taking one day at a time by looking to find something positive from each day. The fact that we still had him in our lives was the main source from which we drew our strength. Even now we still find it best to live our lives one day at a time, enabling us to concentrate on small pleasures; things that in a normal life would be taken for granted, now add richness and colour to our lives. Even though the past decade has been physically demanding and an emotional rollercoaster ride, caring for Jonathan and his ever-changing needs has brought us closer together as a family unit and enriched our lives in many unexpected ways.
For despite living in a society that values status, production and competition Jonathan has – through boundless courage and strength of character – taught us that personal credibility doesn’t come in the form of I.Q. numbers, degrees or sporting trophies. He has revealed the importance of validating and accepting the individual for who they are and whatever contribution they make to society. He has learnt to not only live with his residual impairments, but to teach those around him to do the same.
By far, of all the knowledge I have gained during our journey of hope, discovery and healing, one important fact stands out – human development cannot be accurately determined by science, nor can potential be predicted, or spirit measured.