NWR Issue 105

A Minor Incident on the Way to Buy Toothpaste

In the UK, two to three people become paralysed as a result of a spinal cord injury, every single day.

The teenage years were over, both sons were safely ensconced at St Andrew’s University and they were happy and healthy. I had untied my apron strings and relaxed my guard. Then, on a summer’s day in 2004, my youngest son was involved in a minor accident on a country road on the way to buy toothpaste. It was no more than a shunt really: the other three people were unhurt, but sitting in the back and not wearing a seat belt, Jack’s head hit the roof of the car, which broke his neck, paralysing him from the chest down.

What came next has been movingly documented in Melanie Reed’s ‘Spinal Column’ in The Times. But what happens when the doctors and nurses and physiotherapists and social workers and psychiatrists have done all they can? What happens when the disabled person comes home?

This ‘disabled person’ was our twenty-two-year-old son. He had a future, though not the one we had all expected, and many adaptations had to be made, both practical and emotional. It was dealing with the necessary changes to the house that first helped us to cope with the emotional turmoil and our growing apprehension as the day for Jack’s return from hospital grew near.

Luckily we already lived in a bungalow, so the conversion for a wheelchair user was not as complicated as for some. We needed permanent ramps at the front and back of the house for wheelchair access. Door handles needed to be lowered and altered so that with limited hand function he could let himself in or out of the house. The guest bathroom was converted into a wet-room and the wall between it and his bedroom knocked through.

The wheelchair icon, the one printed over the door of public toilets and in designated parking places, is what most people ‘see’ when they think of disability, so we weren’t prepared for all the unseen paraphernalia or ‘aids’. When Jack came home for good after nine months in hospital, he wheeled himself up the decking ramp to the front door. His bedroom and newly converted wet-room were in place. So was an electrically operated bed with a special mattress, a portable hoist, a toileting wheelchair, a standing frame, a sliding board, a supply of incontinence sheets, boxes of leg bags (day and night), catheters, enemas and assorted drugs for spasms and nerve pain.

At first we needed all of this, and more.

Our day would start in the middle of the night when his father or I would wake him to help him turn in the bed. A district nurse would have visited the previous evening to administer ‘bowel care’, so in the morning I would clean him and change the bedding. His night bag would be disconnected, unfastened from the bed and emptied and then a day bag attached to his penis with a convine and the bag strapped to his leg. It took several weeks of trial and error to find a make of convine which didn’t slip off. Using his remote control he could raise his mattress to sit himself up, then a young girl from a care agency would arrive to dress him and help him into the wheelchair with the aid of the hoist.

The first months were a strange and intimate time. Just before the accident I had been talking to Jack and one of his friends. He had been wearing a wetsuit top and his torso had been so muscular and strong that I laughingly patted it and said, ‘I made that.’ Now he would let me wash, turn and dress him as he lay there in his youth, maleness and beauty. He didn’t look broken or damaged; this was what was so heart-breaking. Nor was there a sense of paralysis as his legs still moved involuntarily. His body looked as if it were ready for life and love and fatherhood and action and running.

There are seven vertebrae in the neck numbered from C1, the highest, to C7. When Jack’s head hit the roof of the car on that sunny morning, he injured his neck at the C5/C6 level. It would have been easy to look for precise details of what activities were still possible after similar injuries. For example, Functional Outcomes per Level of Spinal Cord Injury would have told me that patients like Jack ‘can dress their upper body and assist with lower body dressing’. It was just as well that I didn’t do this research, as every patient is different, if only in small ways.

At an early stage in his ‘recovery’, Jack told us that we didn’t have to turn him in the night any more; he would set his alarm clock and manage it on his own. In time he also devised a way of levering himself into a sitting position without needing to use the bed’s controls. This seemed to involve a furious expenditure of energy, but he persevered. The next piece of high-tech equipment to become redundant was the hoist, which was replaced with a sliding board. A decidedly low-tech item, this is a flat, boomerang-shaped piece of highly polished wood. One end is pushed under the patient’s bottom as he sits on the bed and the other end is placed on the seat of the wheelchair. Then, using the remaining triceps in his arms, Jack could slide across. This method of transfer had been practised in the months of physiotherapy and was to become the way he moved from chair to car or made any other transfer.

I had often wondered how it was that we could walk on the moon, land a probe on Mars and photograph the origins of the universe and yet not find better solutions for Jack’s incontinence. Intermittent catheterization is a solution but needs a fine degree of hand and finger function, which Jack does not possess. However, once again he persevered and the boxes of leg bags were put away to be kept for emergencies. It took much longer to discover a routine which settled his bowel function, but eventually he discovered that a visit from the district nurse every other morning and the use of the toileting chair worked well.

Jack left the Spinal Unit in May 2005 and set himself the target of finishing his degree at St Andrews, commencing in October of the following year. He would need to learn to drive, and after one false start, we found an instructor who had a car with the suitable adaptations. Acceleration and breaking are performed with a special lever, using the left wrist, and the right hand wears a glove with a spike attached, which fits into a hole in the steering wheel. Lights and windscreen wipers are automatic and indicators are triggered by a series of clicks on a rocker-switch. To our delight, he passed on his second attempt, but there were still months of practice to enable him to slide from his chair into the driver’s seat, bring the sliding board into the car, dismantle his chair, lift the pieces across into the passenger seat and then reverse the process once he arrived at his destination.

Jack completed the autumn term at St Andrews, but despite the best efforts of the University to provide him with the help he needed, he decided that he had had enough. He had gone armed with the latest technology: a laptop, recorders for lectures, a voice recognition device and his own specially adapted car. With hindsight, what he’d needed was a full-time ‘buddy’ or carer, so that he didn’t exhaust himself getting in and out of the car; someone who could get to the library in time for him to access the books he needed for the next week’s tutorial, indeed, someone who could turn the pages of the heavy books he was referencing. Jack’s marks that term started to reduce the grade-point-average he had built up with such pride and care over the previous three years: he lost interest in history, the subject that had fascinated him since he was a small child – and that was that. It was then that his father and I finally acknowledged that Jack would never resume, even in a limited way, the life he had before.

If we were tempted to grieve for one more loss, Jack quickly undeceived us. I have often thought about how we would have coped if Jack had become permanently depressed after his accident or if he had railed against his fate and wanted to die. You read of such cases. Alternatively, there are astonishing accounts of paraplegics and even tetraplegics who become athletes, climb mountains, ski down them, or sail the Atlantic. Jack did none of these things. Once again, he seemed to shrug his shoulders, accept that he didn’t actually need a degree anymore, and just got on with his life, back with his parents.

He has now reached a sort of plateau as far as his physical ‘improvement’ is concerned. The days when I had to care for his intimate bodily needs are over. He no longer falls from his chair very often or needs help to get in and out of bed. At some time in the future, there will be a decline, and the hoist and even the electric bed will be needed again, but who ever knows what the future will bring?

Nothing is straightforward, and we quickly learned about the less well-known complications of a high, spinal injury. The most serious of these is autonomic dysreflexia, a life-threatening emergency characterized by a sudden increase in blood pressure. It can be caused by a blocked bowel or bladder, or even an ingrowing toenail; something which would normally cause discomfort below the level of the injured spinal cord. This stimulates nerve impulses to travel up the spinal cord, until the lesion at the point of injury blocks them. The result is a dangerous rise in blood pressure and other, very unpleasant symptoms.

Then there is the possibility of bedsores. Last year, Jack had to spend a month lying on his stomach, to cure a sore caused originally by an ingrowing hair. Kidney and bladder stones are a common side effect of being confined to a wheel chair. Jack can no longer cough or sneeze very well; but he can laugh. Another bizarre result of an injury like Jack’s is the inability to regulate his body temperature. He must never again sit in the hot sun for longer than a few minutes.

Yet as I write this apparently bleak account, I can hear Jack’s voice from his room. He’s laughing and talking on his computer as he plays World of Warcraft. This summer he spent a weekend in Italy, meeting all his friends from the game.

Jack has a life, and he seems content. He is blessed with many local friends who often visit him. It’s almost like an extended adolescence: I can come home to find a gang of lads in his room – these ‘lads’ now approaching 30 years old – watching a film, gossiping and drinking beer. He will drive to the cinema or go out for a meal and he leads a life that is not dependent on his parents’ company. He is dependent on us, of course, and we are lucky to have still his witty, amusing and cheerful company. Sometimes, I think about Anna, the girl he was in love with at the time of the accident, and what his life might have been now, if only…. I also remember the day when he was called out as crew on the local lifeboat to rescue a family cut off by the tide. But I watch, less frequently, the video of him taken by a friend, a week before the day everything changed, where he is doing cartwheel after cartwheel, and laughing into the camera.

Names and other details have been changed to protect the privacy of ‘Jack’.

Ellie Rees is in the first year of her PhD in Creative Writing at Swansea University. Before that she was Head of Languages at Atlantic College in the Vale of Glamorgan, and lived and worked there for twenty-seven years.


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