AUTHOR’ S NOTE

Forever Yours is based on my life story as I remember it. I thought it might be encouraging to people with progressive conditions and maybe interesting to others. I would like to dedicate it to my darling, longsuffering husband, Alan, without whom I wouldn’t even be here at all. I am very grateful to Helen Day, my speech therapist, who devised a method by which I can write, using assistive technology (the Grid 2).

PROLOGUE

It was a cold, wet February evening in 1969. Thirteen-year-old Jane had spent most of the day watching ambulances being unloaded in the courtyard below. She wondered about the people on the stretchers. Had they been in an accident? Or, like her, were they there to undergo tests and for observation?

Although she was on the fifth or sixth floor, Jane occasionally thought she saw a covered stretcher, presumably carrying a dead body. Jane had always had a morbid fear of being buried alive, ever since she’d seen a recent Sherlock Holmes episode on TV in which a woman was drugged and placed in a coffin on top of a corpse. Jane also had a morbid curiosity about morgues, and when she put this together with how she enjoyed her dad giving her spoonfuls of blood from the Sunday roast, she amused herself with the thought that she had in fact been a vampire in a previous existence!

Jane’s parents had brought her to the hospital about a week before for tests to try to find out why she had become so unsteady. She’d been to see a couple of consultants earlier, and an orthopaedic surgeon had referred her to Great Ormond Street because they thought her problems might be neurological.

Jane enjoyed all the tests, except the EEG (or brain wave test), which involved attaching electrodes all over the head with a most unpleasant sticky substance which messed up her hair.

Originally, Jane had been admitted to a children’s neurological ward, but because all the other children were so young, she had been given a private room.

At 13, Jane was already becoming a woman. She was beginning to develop physically. In fact, one of her first periods had arrived during this hospital stay, which was very embarrassing for her. Jane loved reading romantic stories and was starting to dream about becoming an actress (or perhaps a brain surgeon!), and about boys, falling in love, getting married, and having children of her own. All of this made what was to happen next all the more cruel.

***

It was already dark when Jane’s consultant and his registrar came into the room with her parents. She had had no tests for several days as they were working out a diagnosis. The doctors had obviously told her parents about it already. It was not good news. Jane could see that immediately. When the consultant spoke to her, everyone else looked at their feet. “I’m afraid you’ll never walk again,” he said, “and you may only live for another three years.”

Jane was absolutely devastated, and all of her dreams were shattered in a single moment.