I miss my mother so much - J.K. Rowling's narrative of her mother's battle with multiple sclerosis

Inside MS, Summer, 2002 by J.K. Rowling

The author of the Harry Potter books wants better standards of care for people affected by MS. Her mother died of complications from rapidly progressive MS at the age of 45. The MS Society she refers to is the British MS Society, established through the efforts of National MS Society founder Sylvia Lawry. This article, originally published in Britain in 2001, encouraged protest that resulted in a bold reform, described in Getting Disease-Modifying Drugs in the U.K. on page 32.

My parents were both 18 when they met on a train going from King's Cross, London, to Scotland. My father had recently joined the Navy, my mother was a brand-new WREN; both were on their way to Arbroath, where they were stationed. The way my mother told it, a short, dark youth with a quiff pulled open the compartment door, took a good look around at all the assembled WRENs, strode over and sat down next to her. When she complained of feeling cold (an hour outside London on a summer's day in a nice thick serge uniform) he offered to share his duffel coat with her. From the complacent smirk on my mother's face as she told the story I gathered that things you don't want to associate with your parents might have gone on under that coat.

They were married at 19, though in their engagement photo they look about 12. My father left the Navy, with no regrets on either side, and joined Rolls-Royce in Bristol as an apprentice engineer. A year later my mother gave birth to a fat, blonde baby girl, and two years after that had a skinny, black-haired baby girl--my sister, Di.

Though she had all the Beatles LPs and retained an unhealthy love of cheesecloth all her life, my mother could not have been described as a true child of the Sixties. At 22 she settled down to raise her family and keep house, and I never saw the faintest sign, later in her life, that she regretted not having enjoyed the single life more. She had been brought up in a shambolic home by unhappily married parents, and I think she had a romantic idea of what family life ought to be, and never stopped striving to attain it. Her house was always immaculate, she made it an iron-clad rule that we ate together as a family, and she adored--never stopped adoring--my father.

She was the youngest mother I knew and one of the fittest. She played badminton, she gardened, she swam, she walked the dog for miles; she was the sort of woman who could not sit still until every last bit of ironing was done (a characteristic she completely failed to pass on to her elder daughter, who tended to sit down weakly at the very thought of ironing). When she did stop rushing around, however, it was usually with book in hand. She would read absolutely anything--classics, airport blockbusters, biographies, historical romances, thrillers, whodunits--and so fast that my father refused to believe she hadn't skipped alternate pages. She had one of the most contagious laughs I have ever heard, though you didn't really hear much--she literally doubled up, apparently unable to draw breath, while tears streamed down her face.

I was about 12 when she stopped being able to lift the teapot. She had a touch of rheumatism or a trapped nerve, she said vaguely; her right arm felt numb and weak, "like pins and needles." It was one of those little aches and pains you get used to hearing about, without the slightest tremor of alarm or foreboding. Some days she could lift the teapot, others she couldn't, but she was still zipping through the ironing like a demon, and working as a laboratory technician at my school, still playing the guitar, for God's sake, so obviously it wasn't anything very serious.

She was 34 when the odd pins-and-needles sensation spread up her arm and across the right side of her chest. She decided to see a doctor and was referred to a consultant, who wanted her to go into the hospital for unspecified "tests". When we went to see her in the evening we found her helping the nurses hand out trays of food to the other patients.

The test results came back; she was told that she had a "lack of protein" in her spinal fluid. Nobody interpreted this piece of information for her so she came home and brightly told polite inquirers that her arm was numb due to lack of protein in her spinal fluid.

She was 35, the age I am now, when the numbness and the pins and needles spread so far that she and my father went back to the consultant. He did not bother to send her for tests this time or even examine her. After a few polite nothings he told her calmly that she had multiple sclerosis--an as yet incurable complex disease of the nervous system, which impairs the brain's ability to transmit instructions to the muscles.

They came home and told my sister and me. Di and I went into the kitchen, cried, and swore that we were going to behave like angels from then on, a resolution I think we broke within 48 hours.

At first, life went on much as usual--perhaps too much as usual. My mother made few, if any, concessions to her illness. The casual observer would not have known there was anything wrong; she carried on working fulltime, the house was still spotless; she was determined to meet her self-imposed standards. She was relentlessly cheerful whenever anyone asked about her health.