07 February 2009

Friends in need break taboo's

An open day at a Liverpool centre will help us understand how people overcome brain injuries and neurological conditions to live full and rewarding lives. David Charters reports

ON A morning when the sky promises sleet, three women meet under comforting lights in the cafe of a building off the main street for a nice cuppa and a chat about all the usual things.

You know, Christmas shopping, silly celebrities on TV, the weather; yes, the eternal weather – and how one of them began suffering from serious epileptic seizures after her beautiful baby sister died and how the second was almost killed by a hit-and-run driver, who left her bleeding on the Tarmac.

The third just listens, occasionally squeezing the arm of one of the others, the way that women do when they are offering encouragement to a friend telling a story.

And “friend” is the right word here on Norton Street, just off Liverpool’s London Road, where the traffic of the day is passing in grey anonymity. This is the headquarters of Neurosupport, a charity established to provide non-clinical help to people with neurological conditions including the diseases known as Alzheimer’s, Huntingdon’s and Parkinson’s, strokes, migraine, epilepsy, brain tumours and brain injury, as well as anything affecting the nervous system.

There is still a taboo in some circles about mentioning that something has happened to the “brain”, as though its existence is unconnected to the rest of the person; so we use expressions like “a problem upstairs”, while nodding sagely, instead of addressing the facts.

But, on Tuesday, Neurosupport is holding an open day to enable the public to find out more about its work. Exhibits will include a short film, photographs, paintings and poems, all done by people associated with the centre, many of whom have neurological conditions.

And there, sitting in the comfortable lounge with their cups of tea, are Dorothy (Dot) McCarthy, 51, a clerical officer with a housing trust, who is married to Peter, a JCB driver, with whom she has a daughter, Louise, 29; Natalie Shaw, 26, a part-time assistant at Debenham’s store; and Maureen Kelly, 55, the centre’s manager and a mother of two.

The mood is convivial, but Dot is about to tell a harrowing story. Her language is vivid, but it needs to be if you are to understand just a little of what she has experienced and how, as a result of that, spells of day-dreaming grew into full epileptic fits (grand mal).

At the time, Dot was nine and living in council flats in Leasowe, Wirral. One day she was returning home from the local school. She squeezed through railings to take a short-cut home and saw blood on the concrete beneath the window of their flat. Dot’s little sister, Suzanne, two, had fallen from the window.

Her body had been taken back to the flat. “But my mum was coming down the stairs with what looked like a bundle of rags when I arrived. It was my sister,” recalls Dot.

Within seconds, a happy and loving family had been cast into the deepest grieving – the parents, Billy Lines, a building worker, and his wife, Betty, as well as Dot’s five other brothers and sisters. “I used to have little day-dreams, but they never put that down to anything at the time, until I had the full seizure when I was nine,” says Dot. “My behaviour changed, but in those days they didn’t associate behavioural patterns with epilepsy. I was just a naughty child.”

As a result of this, the authorities sent Dot to a boarding school in Somerset, and then another one in Wales.

She was very unhappy and badly treated at both. Dot says that it wasn’t until she was 13 that her parents learned the full extent of her epilepsy, though unsympathetic staff at the boarding schools had referred to her as being “zombie-like”.

As standards of treatment and diagnosis improved, Dot, who later passed GCSEs in sociology, psychology, English Literature and English Language, was treated with drugs to control her condition. But she developed TB and required drugs for that. The doctors decided that these should not be mixed with her epilepsy drugs, which were stopped altogether. For 24 years, the fits stopped.

“And then, for some unknown reason, I had five fits and had to be sent to hospital,” says Dot, who now lives in Moreton, Wirral. “They started happening again after that and I was put back on medication.”

As part of her treatment, Dot started coming to Nerosupport. At the centre, clients can attend courses appropriate to their own condition, particularly “confidence building”, which is crucially important to recovery. They are also linked to sympathetic employers. More than that, it is just a good place for people to meet and talk.

“I have had help in work regarding my epilepsy, basically showing them that because I have a condition, it doesn’t mean that I can’t do a good job,” Dot says.

She was referred to the centre by the Epilepsy Society. “The main thing for me has been understanding that I have a condition and not an illness,” she says. “When I was little, I was told that because I was ill, I had to go away. I was just a naughty girl, who was bad-tempered, but now I have been re-educated. I know that I am like everybody else.

“Suzanne’s death was so traumatic. We were all very affected by it. How else could you have been? T he people here listen to me and talk to me and they have explained what could have happened to me, to help me come to terms with it. It has been like learning all over again.”

The condition is under control again, though Dot still receives the auras, the sensations of deja vu and a sickly taste in her mouth, which can be the prelude to an attack.

She attended the centre twice a week, as did hit-and-run victim Natalie, who received multiple head and body injuries after enjoying a Mother’s Day celebration in the city centre in 2003. These injuries were so serious that there were fears she would die, but after specialist treatment she slowly recovered.

Before the accident, Natalie, from the Vauxhall neighbourhood of Liverpool, was an enthusiastic amateur song-and-dance performer, who had been studying for a career in business, administration and marketing.

She was referred to the centre two years ago. “All the staff here are great. I get on with them all,” she says. “The people at Debenhams have also been great. The confidence-building and just coming here has really helped me.”

Three women finish their tea. They have different needs and ambitions, but each has a life to enjoy. Soon they will meet again, as friends do.

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