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Work Category: Writing

Multiple Sclerosis Killed My Mother

articles non fiction

Index ID: MSKM — Publication date: November 16th, 2003

Note: Published in Sunday Herald.

I never liked New Year’s Eve in the first place. My friends and I usually crammed ourselves into any heaving pub that would have us, or else joined the swarms in Trafalgar Square, and all I have left of these fun-filled nights now are blurry memories of being elbowed in the face or jammed against strangers’ armpits. However, New Year’s Eve 1990 was supposed to be an improvement: 10 of us had rented a cottage in the country and were going to celebrate there instead. But I never saw the cottage. It was destined to be the worst New Year ever, the worst day of my life so far, because at seven o’clock that morning my father telephoned me to say that when he had gone upstairs late the previous night he had found my mother dead in bed.
Our bags were already packed ready for the trip into the countryside; all my then boyfriend and I had to do was get into the car and set off for Chepstow and my father. I will never forget how I felt as we sped along the motorway. Why wasn’t the surrounding countryside wearing mourning? Why hadn’t the universe paused out of respect? How could the radio be issuing tinny music, traffic updates and talk of a “new year” that my mother would never see? She was only 45 and I had spoken to her less than 48 hours before. Why had I ever let her get off the phone? Why hadn’t she warned me what was coming?

Of course, I hadn’t wanted to see what was literally in front of my eyes a fortnight before she died, when I had spent my last weekend with her; she had been exhausted, drawn in the face and unable to walk very far, but I simply refused to imagine what might happen if her illness worsened. I think she knew, though. Shortly before Christmas she had mentioned during a telephone call, for the first and last time, the possibility that she might not live to see me married. I would not hear it; I snapped at her not to be ridiculous, I closed my mind to what I had heard. Yet here I was, after a three-hour drive, pulling up outside a house that already felt forlorn and cold. Her clothes were there, her toothbrush, a shaky note in her handwriting about the shopping, but her body had been taken away. I could not quite grasp the full horror of it: I was never going to see her again.

Multiple sclerosis killed her. Her main symptom was a progressive loss of feeling, first in her right arm, then spreading across her chest and to her legs. From her diagnosis at the age of 35 she had become progressively iller, never having the periods of remission that the majority of people with MS experience. By her early 40s she was using a walking frame inside the house and a wheelchair outside. Only in rare cases does MS progress so rapidly and severely, resulting in death; nobody had warned us that she might die so soon – perhaps she was the only one who knew.

I remembered how she used to tell me that she awoke some mornings and believed for a few shining seconds that the feeling had returned to her legs, that she was in remission at last. I remembered how the regular telephone calls, which had once been peppered with tales of where she had been and what she had done there, became tales of what she had been reading or watching on the television, and then, ominously, mentions of how the illness was disrupting even these sedentary pleasures. I imagined how it must have felt, to be trapped inside the house, alone, for hours on end while my father worked, and I wished I had visited her every single weekend. These memories and thoughts filled most of my waking hours in the weeks after her death.

I know, of course, that these feelings are not unique to me, I know that guilt goes hand in hand with grief, as does its close relative, anger. I was very angry indeed: angry at myself, angry that my mother had died so young, angry at the illness that killed her, but also, and increasingly, angry at the care, or lack of it, that she had received.

By the very nature of her illness, which greatly restricted her mobility, she was increasingly housebound for the last few years of her life, yet the onus was always very much on her to physically move to where services were. A physiotherapist visited her at home on a handful of occasions, but this therapy was never made available to her on a regular basis, in spite of the fact that, by her own account, it made an appreciable difference to her comfort and movement. She was a very houseproud woman who would sooner crawl upstairs than leave the bedrooms undusted; social services provided a cleaner who vanished mysteriously after a few weeks and never returned. She never so much as saw an occupational therapist or a specialist nurse, though both of these are now considered crucial to good care of people with MS. Neither her neurologist nor her GP had any information to give her about services that might be available locally and as for the emotional toll the illness and isolation took on my mother, it was never acknowledged by a health professional; no kind of support or counselling was ever mentioned. The illness had countless unpleasant symptoms other than that pervasive numbness in her limbs; she suffered from incontinence, from balance and co-ordination difficulties, from muscular spasms, sleeplessness and pain, but none of this was specifically addressed either. She was left to muddle on alone, getting information where she could find it, coping as best she could. In short, there seemed to be no kind of coherent plan or strategy for the care of this still-young woman. The bottom line was that she could not be cured and nobody dealing with her care seemed much interested in what else might be done for her.

Well, that was then. No fewer than 13 New Years have passed; surely there have been great improvements in the care of people with MS since then? Unfortunately – and infuriatingly – the answer appears to be “no”. MS still seems to be treated as a “poor relation” of an illness, unworthy of much attention, effort or expenditure.

MS currently affects 85,000 people in the UK. Nobody knows why, but Scotland has the highest incidence in the world (my mother was half-Scottish). The MS Society Scotland, of which I am patron, believes strongly that there are certain very minimum standards that each person with MS, their family and carers, should be able to expect. Parts of the UK are already making some progress towards this goal; Nice (the National Institute for Clinical Excellence) is due to publish guidelines for the care of people with MS this month, which will mean a basic standard of care to which health professionals will work in England and Wales. Here in Scotland, however, no such plans exist.

So why do we need a “standard of care” too? Because at present, there is no guarantee of even minimum standards of provision. More than 3000 people across Great Britain were polled on their experiences of MS healthcare by the Mori Social Research Institute in January and February 2003. This survey identified that “Scots are the most likely to feel that a ‘postcode lottery’ determines the quality of care which people with MS get”. Fewer than a third of Scots say they can always access MS services on the NHS when they need them. Nine out of 10 of those surveyed in Scotland said care for people with MS should be better co-ordinated. Eight out of 10 respondents in Scotland say they have not been informed about the range of MS services their local health service can offer. Over three-quarters of Scottish respondents believe their quality of care depends on where they live. Over 80% say that what they have learned about MS they had to find out themselves.

These statistics make me angry all over again. My mother would have agreed with the majority on every single one of these questions. Why has nothing changed? Why are people with MS – often, like my mother, young adults at the time of diagnosis – offered so little in terms of ongoing treatment and support?

The MS Society Scotland is already funding research in Aberdeen University that I pray may lead, one day, to a cure. A national standard of care sounds much less glamorous than the search for that miracle drug or treatment, yet nothing is more important to people with MS while they wait. It is simply inhumane to neglect people because they have an inconvenient illness that won’t go away. Scotland ought to be leading the world in this area, not falling lamentably short. People’s lives are being blighted, not only by this cruelly unpredictable illness, but also by the inadequacy of their care.

This is why the Multiple Sclerosis Society Scotland is lobbying the Scottish parliament and asking that NHS QIS (Quality Improvement Scotland, which sets standards throughout the NHS) starts working on a basic standard of care for people with MS.

The list of areas where provision needs to be improved underlines how basic the demands are. They include: quick access to a neurologist; advice and support from an MS nurse at the time of diagnosis; appropriate respite care, especially for young people; information about MS and about what services are available locally; easy access to professionals with expertise in MS when it is needed. We are not asking for identical services across the country, because variation in services can be positive and creative. Nevertheless, when six out of 15 Scottish health boards still have no specialist nurse provision at all, and when people in Argyll and Clyde, Lanarkshire and Shetland wait on average over 100 days to see a neurologist after referral by their GP, they are surely right to feel let down by the system.

A national standard ought to ensure that, no matter where you live, health care professionals are aware of your basic needs and requirements and have the time and resources to meet them. But we are also looking beyond the medical/health focus, towards social care.

Would a national standard of care have made much difference to my mother? I am convinced that it would have done. Visits from a specialist nurse, proper support from social services, physiotherapy when appropriate: all would have improved her quality of life dramatically.

I used to miss being able to call Mum when I was miserable, though I’ve got used to that. Now it is the wonderful things that make me miss her most. On March 23, I gave birth to my second child, a son. My in-laws came down from Aberdeen to see him that evening with an enormous teddy made of a lamb’s fleece and we all sat and tried to decide whom the baby most resembled. It was one of the happiest evenings of my life, but after they had all gone home and left me in the hospital, I sat with the sleeping David in my arms and cried at the thought that my mother would never see him, never hold him. She would have been a year older than my mother-in-law, had she lived; she ought to have been sitting beside Barbara, vying for the first hold of David. She missed so much.

I cannot give her my time any more, but I see being patron of the MS Society as my continuing tribute to her, to all she did for me and my sister Di, and to how much we loved her. I know she would have cared deeply that nothing much has improved for people with MS in over a deca de. It now remains to be seen whether the people in Scotland with the power to change that situation care enough to make the difference.

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Dear German Booksellers – Book 5

non fiction

Index ID: DGB5 — Publication date: November, 2003

Note: This foreword appear as a message in the special edition of Harry Potter and the Order of the Phoenix created for booksellers in Germany.

Dear Booksellers,

I am delighted to know that Harry has had the good fortune to be on your shelves in Germany.

I send you all my thanks and best wishes.

J.K. Rowling

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Prince of Asturias Award for Concord 2003 – Acceptance Speech

speech award

Index ID: ASTAS — Publication date: October 25th, 2003

It was a great surprise, and an even greater honour, to be told that I had been given the Prince of Asturias award for Concord.

I certainly didn’t set out to teach, or to preach, to children. In fact, I believe that, with rare exceptions, works of juvenile fiction suffer if the author is more intent on instructing his or her readers than beguiling them with a story. Nevertheless I have always believed the Harry Potter books to be highly moral. I wanted to depict the ambiguities of a society where bigotry, cruelty, hypocrisy and corruption are rife, the better to show how truly heroic it is, whatever your age, to fight a battle that can never be won. And I also wanted to reflect the fact that life can be difficult and confusing between the ages of eleven and seventeen, even when armed with a wand.

I have been writing stories for thirty-two years and have never wanted to be anything other than an author. I lost myself in books as a child, they were central to my existence, and my appreciation of their importance has only increased over time. Children need stories because they need to test their imaginations, try on other people’s ideas, inhabit other lives, send their minds where their bodies are not yet mature enough to go. No film, no television programme, no computer or video game can ever duplicate the magic that occurs when the reader’s imagination meets the author’s to create a unique, private kingdom.

The Prince of Asturias award is very meaningful to me because it celebrates that aspect of the books’ success of which I am most proud: the fact that so many children, of such widely diverse backgrounds, have chosen to accompany Harry during his five years at Hogwarts. I will therefore be donating my prize money to the International Reading Association’s Developing Countries Fund, which promotes literacy worldwide.

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The forest at Hogwarts… – Canada Editions

non fiction

Index ID: FAHC — Publication date: October, 2003

Note: Message included in the Canadian edition of the Harry Potter books printed in 2003.

The forest at Hogwarts is home to magical creatures like unicorns and centaurs. Because the Canadian editions are printed in Ancient-Forest Friendly paper, the Harry Potter books are helping to save magnificent forests in the muggle world, forests that are the home of magical animals such as orangutans, wolves and bears. It’s a good idea to respect ancient trees, especially if they have a temper like the Whomping Willow.

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Harry Potter and the Order of the Phoenix

novel

Index ID: HPOOTP — Publication date: June 21st, 2003

Only the beginning of this text can be displayed here for research purposes. I apologize!

The hottest day of the summer so far was drawing to a close and a drowsy silence lay over the large, square houses of Privet Drive. Cars that were usually gleaming stood dusty in their drives and lawns that were once emerald green lay parched and yellowing – for the use of hosepipes had been banned due to drought. Deprived of their usual car-washing and lawn-mowing pursuits, the inhabitants of Privet Drive had retreated into the shade of their cool houses, windows thrown wide in the hope of tempting in a non-existent breeze. The only person left outdoors was a teenage boy who was lying flat on his back in a flowerbed outside number four.

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Order of the Phoenix Clue Card

manuscript

Index ID: OOTPCARD — Publication date: December 12th, 2002

Note: Half a year before publication of Harry Potter and the Order of the Phoenix, Rowling wrote this 93 word teaser card. It was offered for sale (in a sealed envelope) at Sotheby’s in December 2002 (to benefit Book Aid International). It was sold for £24,000. The full text of the card is unknown.
Only the beginning of this text can be displayed here for research purposes. I apologize!

Harry Potter and the Order of the Phoenix

by J.K. Rowling

Defense Against the Dark Arts teacher is called Umbridge and somebody I like dies, “sorry”

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Foreword: Magic

foreword

Index ID: FWMGC — Publication date: June 3rd, 2002

Note: Foreword for the book "Magic", a collection of short stories published by Bloomsbury to raise money for one-parent families. It is edited by Sarah Brown and Gil McNeil.

My involvement with the National Council for One Parent Families came about either very simply, or very circuitously, depending on how you look at it.

The simple version involved Andy Keen Downs, the charity’s Deputy Director, sitting down in my habitually untidy kitchen, pulling out a sheaf of notes from his briefcase and embarking on what I’m quite sure would have been a marvellously persuasive, well-constructed and beautifully delivered speech.

“Andy,” I interrupted, in that harassed voice which lone parents can often be identified, “you’d like me to be Patron, wouldn’t you?”

“Well, we’re calling it `Ambassador’,” said Andy tentatively, cut-off mid-flow.

“OK, I’ll do it,” I said, “but could we please discuss the details on the way to school, because Sports Day starts in five minutes.”

And so we discussed the National Council for One Parent Families while watching the egg-and-spoon races, a highly fitting start, I felt, for my association with a charity that is devoted to helping those parents whose lives are a constant balancing act.

The long version of how I became Ambassador includes my personal experience of single motherhood and my anger about our stigmatisation by some sections of the media. That story starts in 1993, when my marriage ended.

I was living abroad and in full-time employment when I gave birth to my daughter. Leaving my ex-husband meant leaving my job and returning to Britain with two suitcases full of possessions. I knew perfectly well that I was walking into poverty, but I truly believed that it would be a matter of months before I was back on my feet. I had enough money saved to put down a deposit on a rented flat and buy a high chair, a cot and other essentials. When my savings were gone, I settled down to life on slightly less than seventy pounds a week.

Poverty, as I soon found out, is a lot like childbirth — you know it’s going to hurt before it happens, but you’ll never know how much until you’ve experienced it. Some of the newspaper articles written about me have come close to romanticising the time I spent on Income Support, because the well-worn cliché of the writer starving in the garret is so much more picturesque than the bitter reality of living in poverty with a child.

The endless little humiliations of life on benefits — and let us remember that six out of ten families headed by a lone parent live in poverty — receive very little media coverage unless they are followed by what seems to be, in newsprint at least, a swift and Cinderella-like reversal of fortune. I remember reaching the checkout, counting out the money in coppers, finding out I was two pence short of a tin of baked beans and feeling I had to pretend I had mislaid a ten-pound note for the benefit of the bored girl at the till. Similarly unappreciated acting skills were required for my forays into Mothercare, where I would pretend to be examining clothes I could not afford for my daughter, while edging ever closer to the baby-changing room where they offered a small supply of free nappies. I hated dressing my longed-for child from charity shops, I hated relying on the kindness of relatives when it came to her new shoes; I tried furiously hard not to feel jealous of other children’s beautifully decorated, well-stocked bedrooms when we went to friends’ houses to play.

I wanted to work part-time. When I asked my health visitor about the possibility of a couple of afternoons’ state childcare a week, she explained, very kindly, that places for babies were reserved for those who were deemed ‘at risk’. Her exact words were, “You’re coping too well.” I was allowed to earn a maximum of fifteen pounds a week before my Income Support and Housing Benefit was docked. Full-time private childcare was so exorbitant I would need to find a full-time job paying well above the national average. I had to decided whether my baby would rather be handed over to somebody else for most of her waking hours, or be cared for by her mother in far from luxurious surroundings. I chose the latter option, though constantly feeling I had to justify my choice at length whenever anybody asked me that nasty question, “So what do you do?”

The honest answer to that questions was: I worry continually, I devote hours to writing a book I doubt will ever be published, I try hard to hold on to the hope that our financial situation will improve, and when I am not too exhausted to feel strong emotion I am swamped with anger at the portrayal of single mothers by certain politicians and newspapers as feckless teenagers in search of that Holy Grail, the council flat, when 97 per cent of us have long since left our teens.

The sub-text of much of the vilification of lone parents is that couple families are intrinsically superior, yet during my time as a secondary-school teacher I met a number of disruptive, damaged children whose home contained two parents. There are those who still believe head-count defines a “real” family, who believe that marriage is the only “right” context in which to have children, but I have never felt the remotest shame about being a single parent. I have the temerity to be rather proud of the period when I did three jobs single-handedly (the unpaid work of two parents and the salaried job of teacher — for I did eventually manage to take my PGCE, due to the generosity of a friend who lend me money for childcare). There is a wealth of evidence to suggest that it is not single-parenthood but poverty that causes some children to do less well than others. When you take poverty out of the equation, children from one parent families can do just as well as children from couple families.

My family’s escape from poverty to the reverse has been only too well documented and I am fully aware, every single day, of how lucky I am; lucky because I do not have to worry about my daughter’s financial security any more; because what used to be Benefit day comes around and there’s still food in the fridge and the bills are paid. But I had a talent that I could exercise without financial outlay. Anyone thinking of using me as an example of how single parents can break out of the poverty trap might as well point at Oprah Winfrey and declare that there is no more racism in America. People just like me are facing the same obstacles to a full realisation of their potential every day and their children are missing opportunities alongside them. They are not asking for handouts, they are not scheming for council flats, they are simply asking for the help they need to break free of life on benefits and support their own children.

This is why I didn’t need to hear Andy’s well-rehearsed persuasive arguments on Sports Day. I had already made up my mind that it was time to put my money where my mouth had been ever since I experienced the reality of single-parenthood in Britain.

The National Council for One Parent Families is neither anti-marriage (nearly two-thirds of lone parents have been married, after all) nor a propagandist for “going it alone”. It exists to help parents bringing up children alone, for example, in the aftermath of a relationship breakdown or the death of a partner, when children are faced with a new kind of family and one parent is left coping with the work of two, often on a considerably reduced income. It provides invaluable advice and practical support on a wide range of issues affecting lone parents and their children, and I am very proud to be associated with it.

The proceeds from the sale of this book will go towards the charity’s Magic Million Appeal, whose funds will help maintain the broad range of services offered to lone parents who want nothing more than to pull themselves out of the poverty trap while bringing up happy, well-adjusted children. I would like to offer my very deepest thanks to the authors of the extraordinary stories that follow, and to everybody who, through buying this book, contributes to our appeal. You are offering hope to families who are too often scapegoated rather than supported — families who could do with a lot less Dursleyish stigmatism, and a little more magic in their lives.

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Once upon a time, when I had no money

non fiction articles

Index ID: ONUPT — Publication date: October 21st, 2001

Note: Published on Sunday Times.

In 1994, when I was 29, I set out to obtain a Postgraduate Certificate in education in Modern Languages. I felt cautiously confident; I was, after all, a languages graduate with a couple of years’ experience teaching abroad. True, I did not expect to plunge back into Higher Education with the ease of my 18-year-old self. In 1983 the procedure had been very straightforward: you just had to fill in the UCCA form, achieve the required a-level grades, pick up your grant cheque at the start of term, and lie to your parents about the state of your overdraft until the next cheque came. It never occurred to me at 18 that I might not get the education I wanted; in fact, I took it for granted that I was not only going to get a degree but also make fascinating friends, meet devastatingly attractive men, write a novel, join the feminist society, drink and smoke and wear ludicrously large earrings.

Eleven years on, however, higher education had no frivolous attractions for me at all. The qualification I needed to get back to teaching seemed to be my one and only hope of escaping a situation in which I had never dreamt I would find myself. I had returned to Britain just before Christmas 1993 following the break-up of my marriage, with a baby daughter in one arm and a suitcase-full of clothes and Harry Ootter drafts in the other. By January the last of my savings had gone on a deposit to rent a flat, a cot, a highchair and a pushchair: my daughter Jessica and I were facing life on slightly less than £70 a week. I certainly wanted to finish my novel, but I did not feel that this was the moment to give up the day job – or, at least, give up looking for one; it is one thing to choose to starve for your art, quite another to force your six-month-old baby to as well. As I saw it, the PGCE was my way out; it would lead to work, an income, bills paid, decent accommodation, everything that I had until so recently taken for granted, everything that was last on my mind when we were all 18, when debts were easily repaid by summer jobs, and privation meant not being able to afford the suede pixie boots on which I had (tragically) set my heart.

I look back on the innocent optimism with which I filled in my application forms for teacher training colleges with nostalgic pity. The reality of my situation had yet to sink in. Perhaps that was all to the good, because if I had known then the obstacles that lay in my way to employment, I might have ripped up the forms there and then. Instead I ploughed on, getting some satisfaction from the mere form filling, feeling that I was doing something vaguely akin to work in itself. I received a letter in due course from the teaching college of my choice giving me an interview date and I distinctly saw the speck of light at the end of the tunnel widen into a beam. But then, as so often happens in life, I found myself waistdeep in a problem I hadn’t seen coming, though how I could have missed it is still incredible to me. I can only say in mitigation that I was an utter novice at being a single parent and that I was still happily convinced that people who wanted to work would be encouraged, if not assisted, by the state. I had several sharp lessons coming to me.

The teaching college in question was my preferred option because I had been told that it had a student creche. It was during an unrelated telephone call to the college in question that a secretary told me casually that this had closed two years previously. I had the sensation of having been hit very hard over the head with a blunt instrument. When the initial effects of this blow had subsided I began to make appointments with everybody I could think of who might be able to show me the way to procure fulltime childcare on a student grant. Still punch-drunk, I refused to accept the answer until I had run out of telephone numbers. Then I had to face it: if I couldn’t afford childcare then I could not take my PGCE. It had simply never occurred to me (and here we plumb the depths of my naivety) that the state was not prepared to help with a year’s childcare costs in exchange for never having to pay me a penny’s benefit again. Now, at last, the reality dawned on me: the reason I was trying so hard to claw myself out of poverty – my daughter – was going to be the very thing that kept me there. Or it would have been, had I not been extraordinarily lucky.

A friend, finding me desolate after the last fruitless telephone call, offered to lend me the money for a private nursery. Neither of us ever thought I would be in a position to pay the money back within two years. My friend was simply sparing my pride in calling it a loan, when it was far more likely to be an outright gift. So I went off to teacher training college for what was the toughest year of my life in terms of sleep deprivation and unremitting work. I was terrified of further debt and did not take out a student loan until my second term, when it became impossible to keep myself in bus fares and books without one. the college had hardship funds, too; I felt sorry for the poor people who needed them until another student pointed out bluntly that I was exactly the sort of person for whom the fund was designed. I was past feeling humiliated by this point and meekly trotted off to fill in yet another form. I completed my PGCE in the summer of 1995 and started teaching the following autumn.

As it turned out, I only taught for a year before Harry Potter and the Philosopher’s Stone was published. so was it all a waste of time? Well, no – the taxpayer got a good deal as I never needed benefits again and, if you take the broad view, my PGCE enabled me to pay back all the benefit i’d ever been given because without the open access computers I would never have been able to type out the manuscript. (I say this with a certain amount of shame, because there was a notice on the wall saying to be used for college work only). My story, of course, has an almost indecently happy ending. I had three years of real financial hardship, but I was luckier than many lone parents, not least in having friends who could afford to step in. Even so, I will never forget the feeling of absolute hopelessness that results from the knowledge that however much you want to retrain, however badly you want to work, your opportunities are limited and in some cases denied completely.

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No writer’s block

non fiction letter

Index ID: NWB — Publication date: August 9th, 2001

Note: Published in The Scotsman on August 9, 2001, as a response to an article titled "Has Harry Lost His Magic for J.K. Rowling?" that was published by the same newspaper the previous day.

Resigned though I have become to seeing the name “Harry Potter” in articles containing little news and less truth, when The Scotsman decides to devote most of its front page (8 August) to several columns of total fabrication, the moment has come to protest.

As I, my publishers and my agent have stated since the publication of Goblet of Fire, in July 2000, there was never any intention of publishing the fifth Harry Potter book in 2001, nor has any deadline ever been set for the delivery of the manuscript.

These facts have been on record for over a year and, as children all over Britain have grasped them with ease, I am mystified to know why “Scotland’s national newspaper” is so slow on the uptake.

I made it clear last summer that I wanted to take the time to make sure that book five was not dashed off to meet a deadline, but was completed to my full satisfaction as its predecessors have been, as I was committed to producing two additional books for Comic Relief this year.

There is no writer’s block; on the contrary, when your journalists take a break from leaning on my doorbell, I am writing away very happily.

And while we are on the subject of non-news, some people seem to need reminding that wearing a swimsuit in the vicinity of a man in shorts does not constitute a marriage ceremony, even on Mauritius.

J K Rowling

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I miss my mother almost daily

non fiction articles

Index ID: MISSMOT — Publication date: April 22nd, 2001

Note: Publised on Scotland on Sunday. Published later on April 29th on The Observer under the title "I miss my mother so much".

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.

Her one admission that she had the illness was very much in character; she read everything she could about it. But none of her pamphlets or booklets could tell her why she had the illness or how severely her life would be affected. All they really underlined, as I remember them, was how little was known about the disease. It could affect different parts of the body to widely different degrees. One person might have slightly blurred vision, another might not be able to walk. In most cases the symptoms would increase in number and become more severe over time, requiring ever-increasing provision of care. One odd fact from those booklets stuck fast in my mind (no doubt because Mum was half-Scottish and she and Dad had met and married there): the country with the highest incidence of MS in the world was Scotland.

Her deterioration was slow at first. There were bad spells when her walking became jerky and her general coordination suffered, then she would seem to recover for a while. After a few years, what had once been a bad spell became the norm, and the bad spells grew steadily worse. She was just past 40 when she started using a wheelchair outside the house and 42 when she needed a walking frame inside it.

I have said that little was known about the illness itself, but the medical profession did know that some treatments helped patients manage the symptoms. Adequate and regular provision of physiotherapy (PT in the U.S.) greatly helped people to keep mobile, for instance, when muscles would otherwise seize up or atrophy. It is here that a note of bitterness is going to creep into this article. I would estimate that my mother saw a physiotherapist fewer than 10 times in the l0 years following her diagnosis. She lived in the country and couldn’t drive; for a very brief period a physiotherapist came to visit her, but that somehow fell through, and the physiotherapist stopped coming. The same thing happened with the home help who was sent once Mum had given up work and was reduced to crawling upstairs instead of walking. There never seemed to be quite enough money to provide services for people with MS unless they were hospitalized.

She was stubborn. She really needed a chair lift installed in the house but she wouldn’t admit it. She tried, in a rather half-hearted way, to follow the dairy-free diet * that had been advised; but as the scope of her weekday life narrowed to within the four walls of the house, and then to the ground floor alone, I would imagine that a bit of milk in her coffee did not seem a dreadful indulgence.

I saw her for the last time just before Christmas 1990. She was extremely thin and looked exhausted. I don’t know how I didn’t realize how ill she was, except that I had watched her deteriorate for so long that the change, at the time, didn’t seem so dramatic. I said goodbye to her and left to spend Christmas with my then boyfriend’s parents, the first time I had spent it away from her.

She died on New Year’s Eve. When the telephone rang at half past seven in the morning and my boyfriend’s mother called up the stairs, “It’s your Dad,” I knew. Fathers don’t call their daughters that early except for the worst of reasons. She was 45 and I still can’t write about her without crying.

I need to pause here, not just to blow my nose, but also to state that the rapid spread and severity of my mother’s condition was not typical. She had a “galloping” form of the illness. The effects of MS differ widely from person to person and I would hate to think that somebody newly diagnosed with MS is reading this and assuming their illness will follow the same course.

I went to live in Portugal nine months after she died. MS is virtually unknown in the south of Europe; my Portuguese (now ex-) husband didn’t understand what had killed her. It was only when I came to live in Edinburgh at the end of 1993 that I started to hear MS mentioned, or read about it again.

Let’s fast-forward now–broke, single mother wrote bestseller in cafe–to last year, when I became Patron of the MS Society, Scotland. You might think that I have already explained why I wanted to help, but the fact that the illness took one of the people I loved most is not the full story.

MS, as I have already said, is more likely to strike a Scot than a person of any other nationality. I live in the MS capital of the world. Surely, then, our governing bodies would want to set world standards in research and care? Well–you be the judge.

While research into MS is proceeding in a number of academic and medical centers, most of this is funded by the MS Society. None of the research is funded by the Scottish Parliament and only a tiny amount is paid for by the British government.

While there is still no cure for MS, beta interferon (actually three different drugs) has been licensed for use in Britain for six years, and has recently been joined by glatiramer acetate (Copaxone). These revolutionary drugs slow down the course of the disease for many patients.

In Finland, 15% of the MS population get one of these drugs, in Germany and Italy, 13%, France and Greece, 12%, in both the Irish Republic and Northern Ireland, 8%. And in the U.K.? Between 2 and 3%. You’ve got a better chance of being prescribed an MS-modifying drug in Turkey.

It would cost around 46 million [pounds sterling] a year to give these drugs to every person with MS in the U.K. who would clinically benefit from them. That’s a tiny 0.09% of what the National Health Service will spend this year.

Those with MS who will not benefit from drugs can be taught to minimize the impact on their daily life if given access to professionals such as dieticians, occupational therapists, and physiotherapists. Such services are available only erratically and inadequately across most of the U.K.

In 1999 the MS Society conducted a large survey of people with MS all over Britain, to find out what they thought of the medical and care services available. Some 16,500 people completed the survey. Here are a few of the results: 81% said clinic staff did not discuss the implications of having MS at the time they were diagnosed; 68% were unable to meet a neurologist to discuss their concerns in the month following diagnosis; 74% felt they did not receive adequate support from the health service around the time they were diagnosed; 66% received no advice about how to manage day-to-day activities to reduce impact on their symptoms; 85% had not been advised by their local health service about the range of services it offered to people with MS.

Because of the nature of the disease and the complete inadequacy of the services available, the 85,000 people in Britain who have MS are not the only ones affected. Many care needs are met by members of the family and friends, whose sometimes heroic services are unpaid and unsung.

The MS Society is campaigning to improve these standards of care. One of the quickest and most cost-effective ways of improving care is the designation of specialist nurses. There are only 100 MS nurses across the U.K. Standards of care could be significantly improved overnight, at very small cost, by doubling that number.

Physical aids and adaptations are usually needed. Wheelchairs are the most obvious, but there are hundreds of other aids and adaptations that can make a huge difference to the quality of life. The big ones involve alterations to homes: lifts, doors, showers, hoists, kitchens. With such adaptations, a degree of independence and dignity is possible for the person with MS. Without them–heavy dependence on others and an ever-narrowing life.

MS is progressive–it generally gets worse, so the needs of people increase over time. But are their needs regularly re-assessed? No.

The key specialists involved in getting adaptations are the occupational therapists (OTs). There is an acute shortage of OTs everywhere in Britain. Currently, in Glasgow, there is a waiting time of 29 weeks to get an assessment of needs from an OT. Then there is a long waiting time to find out if the Social Work Department approves the alterations. Then (assuming they do), there is a further long wait until the work is done. It can take up to two years to get a simple modification. By this time for many people with MS, the disease has progressed and their needs have outgrown the adaptation.

The MS Society is the largest organization fighting for the rights of people who have been overlooked for too long. Its help line, pamphlets, and booklets are the main sources of information for most people affected by MS–and for many professionals. Its 370 branches across the U.K. provide activities, support, information, and advice for people with MS, wherever they are. It is by far the largest single source of funds for research into MS. Its welfare grants help give thousands a quality of life, including funding for adaptations and vacations, which would otherwise be impossible. Its specialist respite vacation centers are vital to the continued functioning of thousands of families. Its lobbying and PR have been vital in getting MS onto the political agenda. The Society’s work is entirely funded by voluntary contributions.

I miss my mother almost daily, and I feel desperately sad for all she missed. She died before either of her daughters got married, died before Di gave up nursing and became a lawyer; she never met her granddaughter, and I never told her about Harry Potter.

And while she would have preferred me to have cleared away the remains of the take-away in the kitchen before I sat down to write this, I might have got away with it once I pointed out that support for people living with MS is as woefully inadequate today as it was 10 years ago. She would have found that difficult to understand, and so do I.

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