Below is the true story of Sue Usiskin, who suffers from epilepsy, a brain condition which causes a person suddenly to lose consciousness and sometimes to have violent fits. Sue Usiskin was in a crowded Chinese restaurant with her family when she had an epileptic fit. Her husband Andrew helped her into a safe and comfortable position on the floor, held her hand while the fit lasted and, while she lay there recovering, he and the children started their meal. Then they settled her in a chair and carried on eating.
“At first, everyone in the restaurant was absolutely horrified,” laughs Sue. “Then, as we were leaving, a woman rushed over to congratulate Andrew on how naturally he had handled it all. She had realised that it must happen a lot.” Unfortunately for Sue, it does happen a lot. She is one of the 20% of sufferers from epilepsy whose fits cannot be completely controlled by drugs. She suffers at least three a month. She is an inspiring example of someone who has not let epilepsy control her life.
She has shared that inspiration in a new book, 2 Living With Epilepsy, co-written with Dr. David Chadwick, consultant neurologist at Walton Hospital, Liverpool. The indignity of, as she puts it, “collapsing on the ground in a noisy jerking heap” has long since ceased to worry her, although naturally it is never pleasant, but she has vivid memories of how, as a teenager, friends ran screaming from her when she had a fit in the playground at school.
That she didn’t lose all her self-confidence at that time is all due, she believes, to her parents. “They never tried to limit my activities because of what people might think if I had a fit and how it might affect me. On the contrary, I was encouraged to make an extra effort to overcome my difficulties and not allow them to become an excuse for doing less,” she says. “I tell people I am likely to see regularly that I suffer from epilepsy, and explain what they should do if I have a fit. I say, if I suddenly get up and lie on the ground, make sure I am away from anything I could hurt myself against, then stay with me and hold my hand. That makes them much more confident and comfortable.”
She is adamant that children should be helped to understand what is going on and how to help right from the time they can crawl. “From a very early age, mine were used to seeing Andrew kneeling down with me, showing concern and protection. He always included them – he would encourage them to stroke my face.
They soon knew what to do and they could do it right, if tearfully.” Her son, Oliver, is now 15 and Anna 12. “They are at the self-conscious stage and my fits must be an embarrassment to them. They have both gone through phases of being tense and anxious. But we have supported their feelings, whatever they are, and the fact that they are not frightened to voice them must be good.”
She has always been very practical in her approach to coping. When the children were babies, she would never change them on the bed from where they might fall if she had a fit, or bath them if she were alone in the house with them. She uses casserole-style saucepans rather than long-handled ones which are easier to knock over. She chooses not to swim or ride or take escalators because she personally isn’t comfortable about the risks. But she has never avoided going out for fear of what might happen.
Her own and her children’s courage in that respect have been enormous. Once, when Oliver was two, she was dragged out of a taxi by the driver, who thought she was drunk, and was left to have a fit in the street in the pouring rain. On another occasion, she crumpled to the floor just inside a building society and the staff refused to come out and help because they thought she was a ‘front’ for a hold-up.
The children, when young, often had to tiy to dissuade onlookers in the street or shops from calling an ambulance, and Sue herself has often had to suffer having spoons thrust between her teeth to stop her biting her tongue (incorrect: only something soft, like the bunched edge of a towel, is suitable). She is not bitter about such experiences, except where her children suffered, and looks back on many with humour.
“This is my life and I’ve known no other for so long just get on and live it.” But she is very keen to combat all the ignorance and prejudice. Once someone said to her that she must be very grateful to Andrew for marrying her and that shocked her. Conversely, she feels that doctors often over-estimate the quality of life that someone in her position can achieve.
She regularly gives talks to medical students and GP trainees to give them a truer picture of epilepsy. “I’m still terrified every time I have a fit,” she says. “It is quite something to lose all control for three or four minutes. Believe me, it is a long time and I sometimes go unconscious after. It doesn’t get easier. After a fit, it’s like having a really heavy hang-over for the next two or three days. But there are positives, too. When you know what the rougher side of life can deal you, trivial things don’t worry you at all. I never get upset if the washing machine breaks down.”