Coping with paralysis: despite it all, I enjoy my life

Like 'Miss B', whose request to have her ventilator switched off went to the High Court, Tim Round is paralysed from the neck down. But, as he tells Julia Stuart, his life is far fuller than you may think

Friday 15 March 2002 01:00

For Miss B, the woman who last week appealed to the High Court from her hospital bed to have her ventilator switched off, life has simply become too ghastly to bear. More than a year ago, a burst blood vessel paralysed her from the neck down, leaving her unable to breathe unaided. The former social care worker, who has since been kept alive by a ventilator, now lies in an intensive-care unit watching others die. Now, she wants to join them.

She told the hearing that her quality of life was "unbearable". A psychiatrist put it more graphically: "...she values the prospect of remaining on the ventilator and the disabilities associated with it as being worse than being dead."

Miss B, who is single and childless, has refused an offer to leave the hospital and go to a rehabilitation unit. "My view is that it offers me no real opportunity to recover physically, that in actual fact it will be more teaching me to live with my disability and to make use of the technologies available and that sort of thing, working with the carers. But actually, I will not recover in any way. That is not acceptable to me," she said.

Her doctors have refused to carry out her wishes on ethical grounds. Dame Elizabeth Butler-Sloss, President of the High Court Family Division, has reserved judgment on the case.

In a café in Bridgnorth, Shropshire, 33-year-old Tim Round laughs as he remembers the high jinks he got up to during his 14-month stay in a rehabilitation unit. Throwing mischievous looks at his nurse sitting next to him, he tells tales of coming back late at night after going to the pub with his brother and the nurses. "I probably got up to all sorts, but they never made an issue of it. We were never in. Most weekends, you go out in a taxi and come back late," he says.

That was 14 years ago. Today, he runs his own sports shop. Yet, like Miss B, he is paralysed from the neck down, and spent a year on a ventilator before a pioneering operation allowed him to breathe as if unaided. "My life is normal," he says. "There's nothing else to it. I can do what I want. No one turns their back on you, no one makes you look inferior just because you're in a wheelchair."

Tim lives with his parents, Betty and Bill, in Seisdon, near Wolverhampton. He has 12 hours a day of state-funded care (a rota of four carers, two nurses and one team leader). "They're my arms and legs really," he says.

He works in his shop seven days a week, because he enjoys it so much, and employs a part-time assistant. He does all the ordering over the phone through a headset. "You can adapt to anything. If you want to do something, you will," he says. "You need the help of a lot of people, but you find that there's a lot of help there if you want it."

In the evening, he'll go with his friends to the pub, or maybe out for a meal. At the weekend, he watches Wolves play. Up until a year ago, he was studying IT and desktop publishing at college, operating the mouse, raised on a support, with his chin. "There's nothing stopping you going anywhere," he says. His nurse says that his life is fuller than those of many able-bodied people.

Tim believes that if Miss B visited a rehabilitation unit, she might well change her mind. "The nurses take you out on the night. It wasn't like a hospital; they make it like a family," he insists, adding that his relatives were allowed to visit at any time. "There's physiotherapy, a gym and a swimming-pool. She should at least try something, not just lie in an ICU bed saying, 'I can't live like this'.

"She's got plenty ahead of her. I don't feel down – there's too much living to do. There are able-bodied people worse off than me."

How does he view his disability?

"I haven't got one really. All the operations that I have had have given me a very high standard of living," he says.

Tim broke his neck in a road- traffic accident in May 1988 and was immediately put on a ventilator to enable him to breathe. "I rolled a car," he says. "They wrote me off." At the time, he was working for the family haulage firm and living at home. Six days later, he was transferred to Southport Regional Spinal Injuries Centre, where he came round and was told the extent of his injuries. "There's not really much you can do about it," he says, without emotion.

A more sophisticated tracheostomy tube was fitted to his windpipe four weeks later, allowing him to speak. After his spine healed, he was taught to sit up in a wheelchair. He was then trained in "accessory muscle breathing", a technique that uses the muscles in the neck and top of the shoulder, allowing patients to breathe for up to several hours without a ventilator.

In June 1989, Tim became the third person in Britain to be fitted with a phrenic pacemaker, which artificially stimulates the diaphragm muscles to allow patients to breathe by themselves. It works by means of a surgically implanted radio receiver. The transmitter, not much larger than a CD, sits in a small black pouch in Tim's wheelchair, tucked next to his thigh. He has since had his tracheotomy sealed.

Twenty such patients at Southport have been fitted with the device, the largest number for a European unit. Another 20, who are not medically suitable, remain on ventilators, which are portable and measure just 15in by 12in. All of the centre's rehabilitated patients under the age of 60 live at home.

Bakulesh Soni, a consultant surgeon at Southport, says that none of his patients has ever asked for their ventilator to be switched off. Around 10 years ago, a patient came to the unit expressing a desire to die, but changed his opinion after three months. "He's now living happily in the community," says Mr Soni.

He believes that Miss B is not making an informed choice. "She has not seen what could be achieved with regards to independence, dignity, self-esteem, mobility, holidays and achieving academic qualifications. One of my ladies, who is on a phrenic pacemaker during the day and a ventilator at night, whom I treated 11 or so years ago, now has a law degree and travels all over the world."

Dr Alan McLean, a consultant in spinal injuries at Southern General Hospital, Glasgow, says that there are about 100 ventilator-dependent people with high spinal-cord injury in the UK, most of whom live at home. "If you speak to people with spinal-cord injury, in general, what they all say is that they obviously don't like having the injury, but most of them actually enjoy being alive, and would rather be alive with the life they've got, and making the most of it, than being dead.

"There are no higher instances of clinical depression among those with spinal-chord injury than among the general population," he said. "Some of them go to work, some get married, some can have families, they can go off to the pub and get drunk, they can speak to their friends, they can use voice-activated computers, some paint using their mouths.

"We have had a lady who went up on a glider with a ventilator. It's not a life that anyone would choose, but most of our patients are very glad to be alive."

Tim says that he never looks back and has no great urge to be able to walk again. "How many cups of tea would I owe my brother by now? My father would have me back at work in an hour, and my mother would make me do the washing-up. I don't need that hassle, do I?" he jokes, his face crinkling with well-worn laughter lines.

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