Anne is a nurse who first encountered narcolepsy when she was training in 1956; one day she found a fellow nurse propped up against a wall, able to hear but not move. She later found herself married to a schoolteacher who has narcolepsy, a condition that isn’t life-threatening but that has treatment rather than a cure. It is a long-haul illness. Anne’s husband waited for ages before he found a doctor who was able to respond appropriately. In the meantime, he would come straight home from school and fall asleep. He would then need another nap later in the evening to wake himself up enough in order get himself to bed. Once he was in bed, he also had PLMD (periodic limb movement disorder), which meant that his night’s sleep usually cost Anne a few bruises. Some of the couple’s children also have narcolepsy; a genetic factor has often been observed, but the condition is not inevitable. It is possible for one identical twin to have narcolepsy and the other not.
Part of dealing with all this has meant, for Anne, being available to help others. “A woman rang me at some ungodly hour, just after half past two,” she says. “There was an angel in her room so she needed to know if she was dead yet. I told her she wasn’t and she said that was fine, but she sounded slightly disappointed. She said that it had been very pleasant flying around the room.”