Finding Harmony

The remarkable dog that helped a family through the darkest of times

SALLY HYDER

Copyright

© Sally Hyder 2011

Sally Hyder asserts the moral right to be identified as the author of this work

A catalogue record for this book is available from the British Library

ISBN 9780007393589

Ebook Edition © 2011 ISBN: 9780007393596

Version 2019-07-30

All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the non-exclusive, non-transferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, down-loaded, decompiled, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereinafter invented, without the express written permission of HarperCollins e-books.

To Andrew, without whom no mountains would have been climbed and to Peter, Clara and Melissa who have had their own mountains to climb. And of course to Harmony, who has opened doors to independence.

I love you.

Thank you.

Contents

Cover

Title Page

Copyright

Prologue

Chapter 1 - In the Beginning

Chapter 2 - Surprise on Everest

Chapter 3 - The Axe Falls

Chapter 4 - Bumpy Road

Chapter 5 - Gypsy Life

Chapter 6 - Going Home

Chapter 7 - Black Days

Chapter 8 - Fighting for Melissa

Chapter 9 - Night Falls

Chapter 10 - Hope Dawns

Chapter 11 - Starting a New Adventure

Chapter 12 - Love at Second Sight

Chapter 13 - The Pound that Changes Lives

Chapter 14 - Mayhem and Miracles

Chapter 15 - An Expanding World

Chapter 16 - Double Trouble

Chapter 17 - Venturing Forth

Chapter 18 - By Royal Invitation

Chapter 19 - Tasting Freedom

Chapter 20 - Finishing on a High

Acknowledgements

About the Publisher

Prologue

I’ve fallen in love with Elmo – at least I think I have. I’ve come to meet the new batch of dogs; they’re only 12 months old. It’s one of those bright January days and the barn is flush with sunlight. Here come Caesar and Elmo, old hands looking for new partners, and Headley, a chocolate Labrador who likes to watch me very carefully with his enormous brown eyes. I’m humbled by his trust. Then there are the blondes: Foster, who doesn’t like ‘boarding school’ (as I have dubbed the advance training), still goes home to a foster family at night. Harry and Henry who I can’t tell apart (Harry, I think, has the edge) are full of beans while Harmony is smaller and paler than the rest, with schoolgirl freckles on her face.

Having worked on the simplest tasks such as retrieving dropped items or just walking around without knocking into each other, we’re now practising the supermarket checkout sequence. The idea is for your dog to retrieve cans and boxes from the shelves, put them in your basket and then pass your purse to the checkout person. It’s complicated: already I’ve run over a couple of paws with my wheelchair. There was an outburst of yelps.

‘Sorry!’ I exclaimed, mortified.

‘Don’t worry,’ said the dog trainers, who have the patience of saints.

They check the dogs’ paws, reassuring me. We reach the checkout counter in the corner of the barn – it looks exactly like the real thing.

‘Go through,’ I say, rehearsing the commands. ‘Back, back, back!’

After releasing another foot of lead, I wait for Elmo to go backwards, facing me, past the counter. Hand high, I instruct him to take my purse and he grips it between his teeth.

‘Up table, give it to the lady!’ I tell him.

He puts his front paws on the table and hands it over to Claire, who is playing the checkout girl.

‘Off!’ I say, then again, ‘Up table, get the purse. Bring it here!’

Elmo follows the commands with immense patience but I feel frazzled. This is so complicated: will I ever get it right? Will the trainers think I’m useless and unable to manage a dog?

‘Good dog,’ I tell him. I reach into the treat bag and find a bit of sausage. Elmo gently takes it from me, wagging his tail. In fact, the dogs wag their tails the whole time as if they’re happy to be working. I pat his coat and I’m reminded not to stroke the top of his head. (How would you like it if a stranger patted the top of your head?)

It doesn’t take a rocket scientist to discover how to get a dog to work for you – rewards. As Canine Partners (a disability charity now in its twentieth year that uses specially trained dogs to assist people in their everyday lives) will tell you, there are lots of reasons why dogs won’t work for you: too tired, hungry, hot, bored … But there are two reasons why they want to do so: rewards and fun. My reward bag is full of chopped cheese, sausage, broccoli and carrot (yes, dogs eat vegetables too!). Every time I stick my hand in, I think, yuck! Do I really have to live with a bag of mushy treats attached to me forever?

‘Keep rewarding,’ says Claire, the trainer. ‘Turn off your chair whenever you’re stationary.’

So many things to remember: the last time I was here, I worked with Claire’s dog, Doyle. Doyle is a Standard Poodle Retriever Cross (or ‘Goldiepoo’, as they are sometimes called). He works as a demo dog all the time. Here we go again, I could see him thinking as I dropped my purse on the floor. Yeah, yeah, I know I have to pick it up! He looked at me, big sigh, and then picked it up. I worked with Doyle after teaming up with Guy, a high-spirited Flat Coat. After trying to manage Guy, I felt exhausted – Doyle was a dream in comparison.

At lunch, Claire asks: ‘Do you have a preference?’

‘Elmo and Headley,’ I reply, without hesitation.

‘What about Harmony?’

‘She’s too quiet,’ I insist. ‘Too docile – boring, even: I want a dog with real character.’

In the afternoon we’re sent out to exercise the dogs, one at a time, in a field at the back. They tear across the frozen ground. I wrap my scarf around my neck and throw the ball (supplied by a local tennis club) for Foster. He brings it back and drops it in my lap. Ears cocked, he stares at me. Come on lady, what are you waiting for? I throw the ball again and again and again. All of a sudden, I realise it’s going to be fun as well as useful, having one of these dogs.

‘Do you recognise who this is?’

It’s Becca, the head trainer. She walks towards me with a dog: Harmony. I smile. She takes Foster indoors. Harmony races over, making a sound I later learn to associate with happiness, a mix of a purr and a growl. She places her paws on my lap. Can she really be that pleased to see me? I’m flattered. Vicky, another trainer, lets me get on with it but I feel reassured by the knowledge that she’s still there and ready to step in, if I need her.

I know what I’m expected to do … I throw the ball.

Harmony brings it back.

Then she runs off without the ball and I watch her sniffing the hedgerows and chasing her shadow. I love her curiosity. As I observe her, unnoticed, I feel strangely peaceful. Something in me clicks: I might have been wrong about Harmony. Then she sneezes. Startled by the sound of her own sneeze, she bolts across the field. Her excitement is infectious; I start laughing and can’t stop. I drive the disability scooter as fast as I can all over the field. It goes much faster than the one at home and Harmony tears after me; we weave in and out of each other. I feel the wind on my face and in my hair; I’ve smiled so much my teeth have gone dry.

I’ve remembered what it was to want to be outdoors in the fresh air, trudging through muddy fields, hill walking, climbing mountains and reaching North Everest Base Camp.

Oh, do we have to stop?

Then Harmony decides to let me know she’s there and comes bounding over. I lift her face to reach mine. She nuzzles into my neck and I see the brown streaks behind her ears: it’s as if she’s tried to apply self-tanning lotion and made a mess of it. She’s tried to smooth it on but it’s trickled down her body and legs, and then dried. On her forehead she has a ‘fingerprint’ – a spot just perfect for kissing. Her tail curves backwards and wags furiously; I feel my heart reach out to her. She’s slow to respond to commands, she’s going to need lots of encouragement but there’s something special in there, I think to myself.

I’ve taken to this little soul.

Chapter 1 In the Beginning

As you approach it, Everest gets bigger: you don’t appreciate the scale of it until you leave the last of the Tibetan villages clinging to the mountainside, the prayer flags fluttering in the breeze. Gleaming white against a big blue sky she is majestic – no wonder the Tibetans call her Qomolungma (Goddess Mother of the World).

Our journey to Everest began before we reached Tibet: it started when Andrew, my then boyfriend of six years, decided he wanted to celebrate passing his BSc in Estate Management at Reading University by going on a big trip.

‘Let’s take three months off before I start work,’ he suggested, one night after supper. ‘Let’s do a proper trip. Wouldn’t you love to see China? How about Tibet?’

Andrew and I have been together since he was 18 and I was 20. None of this would have happened without him. He’s a very private person, but it would be unfair to go on without acknowledging this is our story: we’ve always been a team.

We met in Edinburgh in 1979, when I was 17 while I was studying drama. One bleak Sunday morning in January, a year into my course, I heard singing coming from a local neighbourhood church and went in. Raised by, then, agnostic parents, I had no experience of going to church other than attending the local youth club, which was run by the Baptist church in the village in Fife where I grew up. There, the emphasis was on fun, not God. But I’m a very emotional person with a love of choral music: I went in, sat down and by the end of the service, I was elated.

Through the church I met a wonderful group of people who welcomed me into their congregation. The first person I met was Reg, an elderly man who took the time to make sure that I was sitting with people of my own age. Also, there were families who would invite me to join them for Sunday lunch and gave me lifts to and from church.

A few months later, I met Andrew. He was taking part in a playlet: a dialogue between God (a girl in the pulpit) and Man (Andrew at the prayer lectern). My first thought was, I haven’t seen you before. This was quickly followed by: I want to get to know you. When we finally spoke, he came across as a real gentleman. He has a lovely smile and the biggest brown eyes you’ve ever seen; he also has incredibly long eyelashes. Women die for them! He’s dark and handsome with, I found out much later, an Indian great-grandfather. Andrew was mature for his age with an articulacy that meant he could express things in a word, usually yes, whereas I’d use about twenty. I felt able to express myself freely and be understood. It was something I’d been searching for, I realised. He was nonjudgemental and a great listener.

We soon discovered a shared belief in working hard, enjoying life and giving back to society by looking after folk less fortunate than ourselves. After three years at drama school, studying works such as George Bernard Shaw’s Arms and the Man and Shakespeare’s Macbeth; also putting on productions of J. M. Synge’s The Playboy of the Western World and Federico Garcia Lorca’s Blood Wedding, I decided acting wasn’t for me. I wasn’t enough of a performer to pursue it as a profession and so toyed with the idea of studying drama therapy but needed a psychiatric nurse qualification first. So my thoughts turned to nursing. At drama school I’d learned the art of public speaking and appearing self-confident. So, in November 1983 I joined the RMN course at the Royal Infirmary of Edinburgh which, at the time was based in a collection of old buildings with turrets and spiral staircases in the heart of the city. I did a placement on a medical ward (oncology) and I loved it. Once there, I made great friends and immediately knew it was for me although I had to work hard to convince the tutors this was a genuine decision, that I really wanted to care for cancer sufferers. I qualified as a general nurse in February 1987.

For Andrew and myself commitment and loyalty to each other and the things we did, our jobs and now of course our family feature high on our list of priorities. We are also very different: to this day, for example, I still don’t know which party Andrew votes for – a long time ago we agreed not to discuss politics. Some things remain a mystery: how can anyone take or leave chocolate, for example? I once found an eight-year-old Mars Bar in his rucksack that had formed part of his emergency rations. Personally, I can’t be within a 100-yard radius of chocolate without having to eat it all. I am impulsive whereas Andrew thinks things through very carefully; I’m noisy and a chatterbox while he is quiet and deep yet we both love books, good food and climbing mountains.

Now, by climbing I’m not talking about ropes and crampons (attachments to outdoor footwear). I briefly joined the Edinburgh University mountaineering club only to discover that I loved abseiling down, but hated going up! No, I’m talking about hill walking. My childhood in Fife instilled a passion for walking. ‘Munro-bagging’, they call it in Scotland: a term used to describe going up the 283 Munro Mountains (Ben Nevis being the most famous) that Mr Munro mapped in the nineteenth century.

As a child of the Sixties, Munro-bagging was a regular weekend pursuit. I rarely watched TV although I’ll never forget being woken up to witness Neil Armstrong take one giant leap for mankind.

‘This is important and you need to remember it,’ insisted Dad, bundling me downstairs.

On Saturdays, my father worked an extra job selling carpets and would come home with sweets, stories of difficult customers and newly hatched sales pitches. Meanwhile, I spent many a happy afternoon in the local farmers’ fields ‘tatty scouring’. All the kids did it: clearing the fields after the tractor had pulled up the potatoes, proudly bringing home bags of spuds for our mums. Sundays, however, were reserved for walking. After breakfast, Mum, Dad and I would set off, with Dad in socks and boots, whatever the weather. ‘No good comes of baring your feet,’ he used to say, me in my Dunlop Green Flash. I have photos of us in hand-crocheted multi-coloured waistcoats and memories of trudging up hills in orange bell-bottoms, with embroidered flowers swinging round my ankles. Real seventies’ flair! Days were filled with the sound of our breath, the crunch of footsteps, rucksacks loaded with Marmite and cottage cheese sandwiches plus flasks of sweet tea. Although I didn’t think about it at the time (I wished then that I had parents who didn’t march up and down hills), it was there that I discovered my love of silence and being alone with your thoughts – it’s all part of the joy and discipline of climbing.

We walked up to the Old Man of Storr on the Isle of Skye and ate our lunch watching the clouds come in. It was snowing on the way down. When I was 16, we walked the Cuillin ridge from Sligachan, up and over to Loch Coruisk. Increasingly reluctantly, I followed Dad to the top. I stopped early, but he came back for me.

‘Come on, Sally. It’s not far to the top. Believe me, it’s worth it!’ he insisted.

As we reached the lip and looked out, it was then that I understood how you earn a view. The challenge of the climb is rewarded by the achievement of reaching the summit, then seeing the landscape open out before you.

Just before Christmas 1986, Andrew surprised me with the news that we were going hiking, abroad.

‘Morocco,’ he announced, after perusing the travel section of the local bookstore over the course of a few weeks. ‘Walking in the Anti Atlas Mountains. What do you think?’

I couldn’t wait.

Feeling that it would be safer to travel to North Africa in a group rather than doing it alone, we booked our trip through an organised group called Explore Worldwide. The next gruelling six months saw me sitting my Final nursing exams and working in the oncology unit again. That December we flew into Marrakech with a bunch of 10 Brits. My first taste of the exotic, it was love at first sight. Entranced, Andrew and I wandered through the souks, a maze of alleyways where you could buy red clay for staining lips, henna and believe it or not, second-hand false teeth! We bartered for a sheepskin and watched pet monkeys swing from men’s shoulders. At night the main square came alive with fire-eaters and snake charmers, tarot-readers and storytellers. We ate spicy butterbean stew from wooden bowls and absorbed the Arabic voices and foreign smells. I made a point of looking at the women (whose faces were hidden in burkas) in the eye. If I smiled and nodded, so did they. Otherwise they formed a silent counterpart to their men.

On Christmas Eve we took the bus through the Tiz ’n’ Test Pass, leaving the mountains behind in a cloud of orange dust. Christmas was spent in the blistering-hot desert town of Taroudant. The hotel’s palm tree had cotton wool stuck to its leaves and we drank beer from bottles decorated with pictures of Father Christmas. Our seven-course lunch on the day itself consisted of spam fritters, potatoes, salad, soup, burnt chicken, processed peas and cake, served separately and in that order, much to our amusement. The next day was spent walking in the mountains. Escape from the heat (we were on the border of the Sahara) into the cool mountain air was a welcome relief. In the distance we could make out an oasis of palms and orange groves; beyond was desert, stretching as far as the eye could see.

For a week, we roamed the mountains and all sorts of crazy adventures befell us. We stayed in lots of different villages, once in an old derelict house with no running water or electricity. We ate by candlelight and I was given a djellaba (a long, loose-fitting robe) that I wore as we listened to the splash of rain by an open fire while the men played homemade musical instruments, mostly drums but some whistle- and flute-like ones too. Of course no other women were present, but I loved sitting and communicating with the villagers, exchanging ideas about children and marriage through signs and gestures (no one spoke English). In the fishing village of Essaouira, Cat Stevens (remember him?) gave the Call to Prayer at 6.30am and we discovered the joy of eating barbecued sweetcorn and fresh sardines. When it was eventually time to go home, Andrew and I were both thinking the same thing: There is so much out there.

A door had opened and we could see what lay ahead: the big wide world.

* * *

The only problem with Scotland in 1987 was unemployment. Although I’d qualified there as a nurse, in the end I had to move down to London to find a job. It wasn’t too much of a sacrifice, though, as Andrew was by then studying Estate Management in Reading. On 14 February, I reported for duty on the general medical ward at Guy’s, a big teaching hospital not far from London Bridge. I moved into a single room on site. It was a hovel – hot and noisy, with the sounds of trains and the pub and all the other resident nurses in their rooms. The kitchen was disgusting, but Andrew bought me a slow cooker, perfect for stews and soups. It’s still in use today.

I hated the smell of London in the summer: the metallic tang on your tongue, dog poo on the pavements and vegetables rotting in the sun, the sludge of the Thames. Luckily, I didn’t have to wait long before I was moved to a shared flat, newly built and also on site. At my request I was transferred to the oncology unit, where I was responsible for caring for hundreds of patients in an L-shaped ward; men down one side and women down the other, bone-marrow transplants in the side rooms, chemotherapy everywhere. At weekends, Andrew would come up and we spent happy days together (when I was lucky enough to be off-duty) walking through the city, queuing for stand-by tickets at the Globe and going to West End musicals. We loved the musicals: our favourites then were Starlight Express and Les Misérables but we also enjoyed Cats and later on, The Phantom of the Opera (you might say we were suckers for anything Andrew Lloyd Webber cared to throw our way!). Memories of those productions have stayed with us. Andrew and Clara have also done the West End shows and being musical, sing the songs at the tops of their voices. It’s lovely to think we’ve managed to pass on our appreciation to the next generation.

For those brief, fun-packed months, London felt like our city.

Then I began to feel unwell.

The first acute symptom was a pain in my side. This was in the March, just after I’d arrived in the City and started work at Guy’s. At first, I’d felt lonely but now I also felt scared. The symptoms worsened: I needed pethi-dine to control the pain, breathing was difficult, my chest and abdomen began to ache and I was running a fever. Concerned, the doctors eventually diagnosed Bornholm Disease (named after the islands of Bornholm in Denmark) and caused by a coxsackie – group B common virus – that inflames the intercostal muscles. I was admitted to the hospital I worked in, a very strange experience indeed. Being new in town I knew hardly anyone but the staff that I worked with came to visit me and my new flatmates moved my stuff to the flat.

After a week I was discharged and went to recuperate at Uncle Andrew (my mother’s brother) and Aunty Pat’s home in St Neots, Cambridgeshire. They were extremely kind and pulled me through. I remember watching the Zeebrugge disaster on the television: a car ferry capsized just outside the Belgian port killing hundreds, which added to my sense of mortality. I focused on getting back to work and making a full recovery.

Eventually, I arrived back in time for a hot London summer and the slog of working on the wards but I never seemed to improve, not properly: I felt dizzy and exhausted all the time. In the end, Andrew and I decided that I needed a proper break and so I took unpaid leave. That August, we flew to Vancouver for our next foreign adventure.

Aunty Margaret and Uncle Gary (family on my father’s side) had a beef ranch in Mayerthorpe, Alberta. They lived there with their three daughters (Helen, Jennifer and Sandra) and one son (Richard); one of my cousins and her husband has since taken over the farm. In 1966, Margaret went out to Canada on a government-sponsored scheme designed to attract more radiographers to the country. There, she met my Uncle Gary, whose pioneering family had created a farm out of the wilderness. On finding they were short of labour, we spent two very happy weeks working on the farm: Andrew drove the tractor and grew a beard while I helped to pickle dill from the garden, picked fruit and vegetables and took lunch to the men working in the fields in a pail. I was Laura Ingalls Wilder in Little House on the Prairie! Tanned and restored by our outdoor life and with the chirping of crickets and fields of wheat blowing in the wind, we said our goodbyes and hitched our way across the Rockies to Montreal.

We took in the Niagara Falls, ate stacks of diner pancakes dripping with maple syrup (the coffee was undrinkable) and soaked up the sense of space offered by those monumental Canadian landscapes. At this point, we also learned the rules of hitch hiking.

‘Never throw your bags in the boot,’ warned the driver of a truck complete with double bed and fridge who took pity on us and feared for our safety after I climbed into the front seat, leaving Andrew to do the bags. ‘I could have driven off with the bags and left you behind!’

Lesson learned.

Six weeks later, back in London we realised that we had caught the travelling bug. Now the city seemed more claustrophobic than ever but no sooner had we returned to our working and student lives than Andrew was revisiting the travel sections of local bookstores and eagerly planning our next trip.

Chapter 2 Surprise on Everest

In the summer of 1988 Andrew passed his exams, New Order’s ‘Blue Monday’ was back in the charts and Melanie Griffith, the ultimate eighties’ poster-girl, was outmanoeuvring male colleagues in Working Girl. We were off again. On a hot Saturday afternoon in June we caught the Tube to Trailfinders, the Holy Grail for travellers on London’s Kensington High Street, where we purchased air tickets into Hong Kong and out of Delhi. It was the journey we had been building up to: first Canada and Morocco, now Asia.

‘It’s my responsibility to show you this,’ said the travel agent, passing us a copy of a warning issued by the Foreign Office:

Customers have been advised of a volatile situation between arrival and departure points.

‘So, travelling between China and India isn’t officially recommended?’ asked Andrew.

‘Not officially,’ said the travel agent.

‘Oh well,’ I smiled.

Tickets in hand, we walked over to Holland Park for a celebration picnic, at which point Andrew turned into a magician. Instead of pulling rabbits out of a top hat, he produced from his rucksack a tablecloth, glasses, champagne and smoked salmon. It was the most ridiculously romantic gesture I’d ever seen and perfectly suited to the white-walled gardens, the sunshine and our elated mood.

Later that week Andrew came home with a shiny copy of The Lonely Planet Guide to China and we spent hours poring over photographs of the Great Wall of China and figuring out our route. First, though, we had to earn the fare. Earlier that year I had decided that I wanted to care for the terminally ill and had been offered a place at St Christopher’s Hospice in Sydenham, Kent. I’d realised that the part of the oncology job that I found most rewarding was when the battle and stress of chemo-therapy and radiotherapy were over and palliative care was the way forward; it was a more positive and holistic way to be with the patients, I wanted to get to know them, to treat them as individuals and I was keen to learn how to do this type of specialist nursing in what was then the best place in the UK for palliative medicine.

I’d decided to defer my new challenge until Andrew had finished his BSc, so I went back to Guy’s. That spring was spent working as a nurse from 7.30 until 3pm before rushing across London to a smoky wine-bar near Price Waterhouse in the Embankment. There, I changed into a black dress and white apron, then popped champagne corks for pink-faced city boys, who gave me 10 per cent of their tabs – the tips were insane. I was there until 8pm every night. Otherwise days and nights off were spent working as an agency nurse in private hospitals all over London. Officially this was ‘moonlighting’ but there was such a shortage of nurses then that it was easy to get extra work and everyone did it. I worked hard that spring, but it was worth it.

Eventually, it was time to go. Sometimes when I look back on our trip through China, I wonder, how did we know which trains to catch? No one spoke English. We went prepared: we had the usual jabs – cholera, typhoid and Hepatitis B – and bought bags of malaria tablets. Also, we took our own chopsticks (a precaution because of the risk of Hepatitis B) and had rabies vaccines, which can buy you a bit of time if you’re bitten by a dog. In Tibet, if you fail as a monk then you come back as a dog, which accounts for the packs of wild dogs in the temples (nothing to do with the food left lying around, of course). Although we didn’t voice our hopes for fear of disappointment, secretly both of us harboured the same dream of seeing the Potala Palace in Lhasa, the former home of the Dalai Lama.

We woke up on the descent into Hong Kong after a night flight. The plane flew so close to the skyscrapers that you could see what people were eating for breakfast! Its wheels hit the ground, it braked before tipping into the sea, the doors opened and we were met by a wall of heat.

What a shock.

We found a room in Kowloon on the mainland. A fairly grotty place. We were kept up by the all-night chatter, doors slamming and general commotion. The next morning I woke up with 25 tick bites. Things improved when we found the Youth Hostel on top of the hill on Hong Kong Island. Its whitewashed buildings were a refuge from the hustle and bustle of downtown Hong Kong and there was a strong sea breeze.

We spent our first days wandering through the streets and stalls, marvelling at the strangeness of it all, in particular the food. I am fairly sure we accidentally ended up eating animal intestines but somehow survived. After securing our Chinese visas, we caught the overnight ferry to China’s mainland: to Guangzhou, as the City of Canton was then known. Everywhere we went the Chinese were fascinated by my blonde hair, which caused quite a sensation. Women would approach with outstretched arms to touch it and I’d usually oblige. Our rucksacks were also an innovation: they beat straw ropes, which was what the Chinese used to carry everything.

Certain things we figured out pretty quickly. When you arrive in a new place, buy a ticket out immediately (demand is high). We always went hard sleeper, too. Each carriage had 20 rows of three-tiered bunks – the secret was to go for middle and bottom. If you got the top bunk, you were squashed against the ceiling where tiny fans whirred day and night. On our first journey, I opened the window to let air in and a Chinese man shut it. I opened it again. Wrong! This was a steam train and the smoke and soot blew straight in our eyes; it was even worse going through a tunnel. Those 33-hour journeys were long, with people spitting and vendors offering fried food through open windows at the stations.

But there was plenty to marvel at: light flooded the valleys and the endless green paddy fields. In fact, there was a strange tranquillity in the knowledge that you couldn’t go anywhere but just had to sit there with all those people and the train jolting beneath you and take it all in. It’s amazing how the mind can release its normal grip on time when you allow it to do so.

Suddenly a group of Chinese women appeared and motioned for me to accompany them. I got up and followed them down the train, where I found Laura, an English girl, in floods of tears. She was going to Shanghai for her medical elective. Overwhelmed by the foreignness and loneliness of it all, as well as her predicament, she couldn’t stop weeping. Alarmed, her fellow passengers had gone in search of other foreigners known to be travelling on the train. Laura cheered up when she saw me and shared her fears. How lucky I was, I realised, to have Andrew. I sat comparing travel notes with Laura until we parted at Shanghai, by which stage she was once again looking forward to her adventure.

From Shanghai our journey took us up the Yangtze River in a decrepit old passenger boat. It was filthy, with squatting toilets and inedible food (if you were lucky enough to find any) and was as hot as a furnace. We’d booked second-class tickets and found ourselves stuffed into an airless, crowded dormitory but then we met a couple of English tourists who had cleverly booked a first-class cabin with curtains and a breeze. Instantly, we became best friends and took refuge in their cabin, playing cards and chatting.

We disembarked at Nanjing and then went on to Xian to see the newly discovered Terracotta Army. Standing in a vast cavern, looking at those mythical soldiers was a surprisingly moving experience.

It was becoming increasingly apparent that the authorities didn’t like independent travellers. We had to keep avoiding the CITS (Chinese International Travel Service), who were keen to bus everyone to the foreigners’ hotels, where they could keep tabs on us all. Instead we stayed at a student hostel in Beijing University, where everyone wanted to talk to us. Big things are going to happen, we were told. We had no idea what the students meant but the following year, 1989, came the Tiananmen Square massacre. You could see the curiosity and interest in the young people’s faces as they asked questions about the other side of the globe, places they could only dream of. We felt like early travellers coming back with reports of life in faraway countries: we were the lucky ones.

From Beijing we travelled out to the Ming Tombs and the Great Wall of China. Within moments of walking, we found ourselves alone, gazing out at mountains that seemed to be forever rolling on; the scale was incredible. The Great Wall snakes into the distance and I can well believe that it can be seen from space.

And all the time we dreamed of Tibet.

But we weren’t the only ones. The closer we got to the border, the more Westerners we met, all intent on making the same journey. ‘Have you noticed beer is cheaper than bottled water?’ was a common greeting. There was a sense of camaraderie among the Europeans which meant we operated as one: we were tourists from the same place – the West. We arrived in Xinning and then went onto Golmud, the end of the railway line, which resembled a film-set of dusty nothingness. It was an eerie place. Behind us the sun disappeared in clouds of dust and I fell horribly ill after eating a yak burger. Lying in the hotel bed, thinking I was about to die, I became obsessed with a need for apple juice.

‘I want apple juice!’ I moaned.

When Andrew appeared through the door, hours later, with a tin can of fizzy apple juice, I thought I was hallucinating. Gulping it down thirstily, I felt instantly better.

By the time we arrived in Golmud we were among a group of 10 Westerners from Canada, USA, Switzerland and the UK – a big bunch of backpackers. We were herded into a hotel by the notorious CITS, who told us we would have to pay £200 each for a three-day trip into Tibet – ‘guided’, of course. As we wanted to travel through Tibet and on into Nepal this represented a bit of an issue, never mind the cost. After discovering one of our group spoke Tibetan, we could scarcely believe our luck. Now we could improvise: we could smuggle ourselves over the border, which was exactly what we did.

Serendipity has a funny way of taking over in situations like this. You just need to know roughly where to look and be prepared to pay for it. Before long, we had found a local bus driver who was driving the scheduled bus long distance into Tibet. We were smuggled out of the hotel in the middle of night when it was pitch-black. At the Chinese checkpoint where we left Golmud, the driver turned off the bus lights.

No one spoke English.

It was real cloak-and-dagger stuff: we were disguised in cowboy hats and cloaks provided by the Tibetans. The biggest problem was my blonde hair, which I had to stuff inside my hat. When the bus stopped we were herded out to walk around potholes too deep for it to be driven across, some stretching 20 feet long. We were conscious of passengers being beaten by Chinese soldiers but no one asked why.

Then we passed into Lhasa.

‘Not in China now, no passports,’ the hostel keeper informed us.

Grinning from ear to ear, we dumped our bags on the floor. We’d made it, though we weren’t entirely sure how it had happened.

The next morning – a crystal-clear day – we woke up in Lhasa and gazed up at the Palace, which sits on a ridge and was framed by the mountain range with slopes of snow and rock. It was as if we’d stepped back in time. We got dressed, had some tea and went for a walk. In silence, we gazed up at the stupas containing the bodies of all the Dalai Llamas.

‘Psssst!’

We turned to find a young monk behind a pillar.

‘You speak English?’ he asked (it was illegal for Tibetans to learn English).

‘Yes.’

He showed us a book.

‘AD,’ he said. ‘What does this mean?’

‘Anno Domini, the year of our Lord. Have you heard of Christ?’

His face lit up: ‘Ah, the Pope!’

Although we always hoped to get to Tibet, the prospect of climbing the Everest Foothills had been a distant reality. It only began to sink in as we packed our rucksacks with supplies for the trip. I’ve got a photo of Andrew sitting on the bed in the guesthouse studying the guidebook. Beside him on a wooden table is a pile of cans and packets, the tallest stack being noodles. (In the high altitude, the water wouldn’t boil and we had to eat them still crunchy.) Next to the noodles are cans of spam, lychees, peas, a jar of redcurrant jam, powdered baby milk that we drank with melted chocolate squares on top (delicious!), sampa (barley rolled in yak milk to make little balls of dough like a solid porridge) and loo rolls. We had to buy it all from the Friendship Store (a store only foreigners can use) as nothing was available locally. It meant playing along with the Chinese, using their currency rather than the local Tibetan Riminbi and pretending we were just tourists there for the day.

It’s amazing to think this is what got us up 5,208 metres, along with Andrew’s quiet insistence.

‘Come on, Sally. Just a little bit further!’

After a few days in Lhasa, during which time the big Nepal earthquake had injured more than 16,000 people – and we ourselves felt the tremors – we caught the local bus to Gyantse. When the driver tried to overtake a lorry on a hairpin bend, I found myself sitting above the rear wheel as it spun over emptiness. I let out a loud scream.

‘Try not to let your imagination run away with you,’ advised Andrew, the voice of calm.

The driver accelerated hard enough to send the truck hurtling forward, away from the precipice and on into Gyantse. From there, we hitched a ride west to Tingri, lying flat in the open back of a lorry like fugitives. It was exciting, even though the journey seemed to take forever. Every so often the driver would stop, enjoy a few more bottles of beer and gamble with the householders who had provided the refreshment. Arriving with blackened faces from the exhaust, safe but sore, we felt like real adventurers now.

‘Come on, Sally. Just a bit further!’

The aim was to get to Rombuk monastery. At 5,000 metres above sea level, it’s the highest monastery in the world. By now we were a group of seven. Together, we hired a couple of yaks and a guide and stayed in yak-skin tents, which have a hole in the top to allow smoke from the yak-dung fires to escape. We drank yak tea (or ‘yuck tea’, as it came to be known). Made from tea, salt and yak butter, unless drunk very quickly it congeals on your tongue. The climb was slow and hard work; we all suffered forms of mild altitude sickness but one of our group actually had to go back as he was clearly unwell and the only cure is to descend. At one stage we had to cross a roaring river via a crumbling stone bridge that I was convinced would collapse beneath our weight. Otherwise, there was just silence and fluttering prayer flags, the rumble of prayer wheels (wooden wheels reputed to accumulate wisdom and good karma as they spin) and the occasional flap of bird wings. It’s a desert region: food is hard to come by and there is no green, just mile upon mile of rocks and Everest shrouded in mist in the distance, drawing us ever closer.

Arriving at Rombuk monastery is unexpected: after a two-day walk up the valley, you turn a corner and the ridge flattens out. There it is, clinging to the side of the Everest valley like a beleaguered fortress. The monastery is still inhabited by a community of monks and nuns whose lives are dedicated to God and survival. With their lined, weathered faces and faded tunics, they seem to belong there on the mountainside. We stayed in a platform hut built on dried mud, with Tibetan rugs and the best loo with a view I’ve ever encountered. From there, you could see Her Majesty. The monks also operate an efficient black market currency exchange and charged an extortionate amount for their eggs, which just goes to show everyone has to survive somehow.

As soon as we arrived at the monastery, I looked at Andrew and knew from his set jaw and gleaming eyes that he’d decided to go on. Now the plan was to get to North Everest Base Camp: just seven kilometres of rocky terrain with heavily loaded rucksacks away. After a fitful night’s sleep on a hard floor and more green tea, we set out the next morning.

‘Just a bit further, Sally.’

CLICK!

I took a photo to remember the spot, the exhaustion and the sheer elation of being on top of the world (well, almost!). Here’s Andrew in his Harris sweater knitted by my dad (we had one each) and walking boots. He looks every bit the gentleman explorer – no different, in fact, to George Mallory and Andrew Irvine, the first British mountaineers to attempt to scale Everest in the 1920s from the Tibetan side. Mallory gave the infamous answer to the question, ‘Why did you climb it?’: ‘Because it’s there.’

Only Andrew’s white-framed sunglasses (oh, so eighties!) give the decade away.

We reached the British Base Camp in the afternoon. This turned out to be a bunch of scruffy huts and more prayer flags, looking ragged; there was a cairn and tents and provisions. I had expected posh tents but they didn’t look any different to the ones we saw when walking the Munros. Yet despite the low-key nature of the camp, our moment of arrival still stands out as the most exhilarating of my life: to be there on the flanks of Everest (and not on the Nepalese side on a guided tour) and all down to our own initiative and resources was a remarkable feeling.

Unloading our rucksacks, we tried to take it all in. We were so close to Everest that the view was obscured by whiteness; it was hard to connect where we were with the myths and expectations surrounding the world’s highest mountain – she was every bit as powerful as the place she holds in our imagination. No wonder men sacrifice their lives for her, I thought, cupping a hand over my eyes to avoid the glare.

I sat down.

‘No, come on,’ said Andrew. ‘I want to go a bit further!’

‘Right now?’

‘Yes.’

I stood up.

‘OK, that’s far enough,’ he said, half an hour later. ‘I want a photograph of us with Everest in the background. Can you take a photo?’ He gave the camera to our new friend Peter, a Canadian mountaineer. ‘Actually, take loads!’

Andrew had taken off his ski-jacket. His lips were chapped and his nose, like mine, was striped with sunblock. He came and joined me in front of the camera. Together, we blinked in the sun and I relaxed into the pose. Then all of a sudden, he dropped down on one knee.

‘Andrew?’

I watched him rummage in the camera case hanging from his neck then I looked over his shoulder towards the craggy face of Everest and its snow-covered slopes.

He can’t have planned this in London.

‘Will you marry me?’

I burst out laughing. As he pushed a diamond and ruby ring over my finger, I started to weep with happiness.

I had waited so long to be asked and now when I least expected his proposal and it couldn’t have been further from my mind, there it was. Insane. In the space of a few hours, all my dreams were coming true. My next thought was, get the ring back in that box before you lose it!

‘Yes,’ I replied. ‘Yes!’

That night we celebrated our engagement at Base Camp with the British expedition teams who had failed to scale the Northeast ridge as the bad weather had come in. The men were tired and gruff. It felt so exciting to be there, eavesdropping on their stories, that I didn’t appreciate how disappointed they must have felt at not succeeding. One of their group was part of the mountain rescue team in Glencoe and another belonged to the Guinness family. With them were the Sherpas, quite extraordinary men who get themselves and everyone else up Everest, carrying loads, while more often than not inadequately equipped or reliant on the teams to equip them. For me, it was a glimpse into a world I would never see again.

Meanwhile, I twisted my engagement ring round and round my finger. During the trip, I’d lost so much weight that my fingers had shrunk and it didn’t fit: the ruby glinted, blood red, in the firelight. We drank whisky and ate the Scottish food provided for us by the team: tinned mince and peas followed by Dundee cake. After months of rice, the food was too rich and we were all violently sick.

Once I’d recovered, I called Mum on the UK team’s satellite phone (there were no mobile phones in those days).

‘Andrew’s asked me to marry him.’

‘What is the terminal moraine like?’ came the reply.

Mum’s a geography teacher – well, she was then – and she’s crazy about mountains. My laughter echoed around the world, distorted by the thousands of miles between Tibet and Scotland. We spoke to Dad then rang Andrew’s parents. All were relieved to hear from us and also happy with our news. The evening was as unexpected as life itself. We listened to the mountaineers’ stories and felt blissfully tired and full of whisky.

I have a photograph of Andrew on bended knee and me in sunglasses, my hair in a ponytail, looking like the happiest couple on earth.

Next morning, the rest of the tourist group left Base Camp to begin their descent but we stayed put. The British expedition team lent us a tent. We wanted to celebrate our engagement and they, perhaps to alleviate their gloom, were happy to have us there. They were all a bit depressed: the anti-climax of failing to reach the summit after years of preparation and expectation must have been hard to bear. When it was time to leave, we thumbed a ride with the team to the main road. The truck driver was a maniac and the Sherpas jumped out of the back of the truck. I remember thinking, if they’ve jumped out we’re entitled to be scared but there was no way we could escape.

We had planned to continue through to Nepal but the road was blocked due to the earthquake and so we ended up with a two-day drive, again hitched. Back in Lhasa we bought some Lux soap from the Friendship Store and took long, hot showers. I’ve never felt so clean in my life! To this day the smell of Lux, that pungent chemical perfume, takes me back to then: clean, safe and the proud owner of a sparkling ring.

Two months later, non-violent forms of protest broke out in Lhasa with demonstrations led by monks and nuns. At long last the Tibetans’ struggle for independence became associated with demands for democracy and human rights. By 1989, Tibet was closed to foreigners, martial law had been declared and Chinese soldiers were positioned on rooftops. We’d got there just in time.

To be able to enjoy the adventures of each day in the knowledge that we had made this new commitment to each other was bliss. We sent postcards of Everest as engagement announcements, which much to everyone’s amusement arrived home after us. Our wedding invitations were sealed with cut outs of Everest surrounded by a gold wedding ring, embossed in gold. On the day itself we served Everest-shaped chocolates with coffee (‘Qomolungma chocolates’, as written on the menu).

Memories of our four-day trip to Everest remain part of our marriage: they’re part of our commitment to each other and the world.

Chapter 3 The Axe Falls

On 16 September 1989 Andrew and I were married in the village of Aldbury, Hertfordshire. By this time, my parents had moved to the Isle of Harris, which I felt was too remote for the wedding and so I rang an old family friend, Margaret Kitson. In many ways, she was my surrogate granny. The retired schoolmistress of the old village school, she was in her eighties and had decided to learn Greek in order to read the Bible in Greek. She was a Christian with a youthful spirit, a zest for life and a fairy-tale cottage with low ceilings and creeping roses.

Margaret understood things in a way I’ve rarely encountered since. The most astute comment ever made about my relationship with Andrew came from her: she said that I prevent his feet from getting stuck to the ground and he stops me flying off altogether.

I’d always loved Aldbury. It’s a picture-postcard English village with a village green, stocks and a duck pond. We were married in the Saint John the Baptist church. A local lady called Sue did the flowers and followed my then-unfashionable request for a trailing bouquet and crowns of flowers, the inspiration being A Midsummer Night’s Dream. Mum and Dad had purchased my dress from Jenners, the then-independent equivalent of Harrods in Edinburgh. I made the veil, embroidered with seed pearls, which was attached to the crown of ivy and roses in my hair. My bridesmaids wore green – I’d made their dresses, too. Two of the girls hadn’t been available for fittings and the dresses unfortunately gaped at the neckline so tissues were employed as stuffing. These came in handy when my grandmother had a nosebleed during the ceremony and hankies were produced from some rather unlikely places.

Our big day was everything we had hoped for: the sun came out and the setting was perfect, surrounded by family and friends. During the romantic carriage drive to the reception, Andrew and I remembered Everest and all it meant to us. The evening rang with the sounds of a ceilidh band, complete with caller, that I had managed to source. This type of dancing came as something of a surprise to our guests who were expecting the more predictable cheesy DJ and a few eighties’ hits but everyone danced the night away.

In his wedding speech, Andrew talked of our shared challenge of reaching Everest and how important it was to us. We spent our honeymoon in Venice. Not that I realised it before we left – the trip was to be a surprise for me. All I knew was that we nearly missed our ferry: that morning over a leisurely breakfast Andrew suddenly remembered our passports were with his best man, who was rowing on the Thames. A worried phone call (still no mobile phones) brought the news that Adam was too hung-over to row. Instead he met us at a service station en route to hand over the passports. Phew!

With balloons and decorations flapping from the car, we arrived at the ferry terminal and were motioned on across an empty boarding area. Talk about last minute! We stayed one night in a small village in France and then another on the banks of Lake Geneva in a small, eccentric Swiss guesthouse; I still didn’t know where we were headed. Eventually, we ended up in a sleepy little village called Chioggia over the bay from Venice, in a fisherman’s tavern, and were wonderfully spoiled by the locals. We then moved on to Sienna, Giglio (a lovely island) and Florence.

Marriage suited us. Andrew and I are both children of strong marriages. My parents (Robin and John) met when they were teenagers and despite their differences have sustained a commitment that’s still going strong; my in-laws’ marriage I often imagine as a rock in stormy seas.

After the excitement of the wedding and all the travelling the return to reality came as a jolt. That autumn Andrew bought a new suit, had a haircut and started work as a surveyor looking after investment property portfolios in London. The job was interesting and meant that he could follow his dream of working in the City. After working eight weekends in a row at the Hospice, however, I was tired of shifts. No stranger to change, I applied and got onto a health-visiting course. This included practical and theory tuition in affiliation with a GP’s surgery in Lewisham, which was around the corner from where we were living in Catford (otherwise known as Forest Hill). It started as soon as we got back from our honeymoon. In fact, I missed the first week of the course.

By the time I was five, I’d lived in four different houses. Since I’ve been married to Andrew (21 years as I write this), I’ve lived in just three: I like the permanence of home, I like feeling settled. Our first flat was a two-bedroom conversion in a large Victorian house in Catford with high ceilings and a mantelpiece. A little bit of back garden was accessible through the front door and down the side alley. We completed at the height of the property boom and were seriously hit by negative equity but it was all ours. I purchased oddments of carpet and some second-hand blue velvet curtains and filled the window boxes with peonies, geraniums, trailing lobelia, fuchsias and marigolds.

On Christmas Eve we bought a Christmas tree that I decorated with red bows and white fairy lights. Andrew sat down. I sat on his lap and immediately fell fast asleep.

‘We need a dog.’

It was Saturday morning. We were drinking tea and deciding whether to do the South Downs or more decorating. The best thing about weekends in London was being able to head out to the country or go into town to visit the museums and the theatre.

‘I agree,’ said Andrew.

We had reached the dog-owning stage of our lives. Both of us were dog lovers. Growing up as an only child, I’d always been grateful for their company. For my sixth birthday, Mum and Dad gave me Sandie, a gun-shy Gun Dog, who proved to be a great companion and partial to crisps. I was eating a packet of crisps when we went to get her. Unsurprisingly, she came to sit at my feet and obviously I thought, she knows I’m her owner and that she’s mine. What a clever girl! She also loved hill walking as much as the rest of the family.

Sandie’s way of expressing her displeasure at being left at home was to collect all the shoes in the house and leave them in a pile, mercifully undamaged, in the middle of the living room. She also disgraced herself almost immediately by eating the gingerbread house that Mum had baked for my birthday. Six months later she made a foray into the Christmas cake. We soon learnt about Labradors and food!

When I was 13 years old, Mum found a stray outside my school. We took the dog to the police pound but in the ensuing conversation with the on-duty policeman decided to keep him. Mum wasn’t normally spontaneous but something about Shep made us fall in love with him. All black, he was possibly a Greyhound/Labrador mix, desperately thin and scared out of his wits; he had scabby paws, burns down one side and his ear had clearly been cut with scissors. The vet reckoned he had walked for miles. He might have been an unwanted Christmas present, living rough until he showed up outside school. Once we’d taken him home, he slept for three days and ate everything we put in front of him. He was so malnourished the vet warned that he could die if he wasn’t carefully and gradually introduced to food.

Shep was a real rascal. Dad was convinced that had he been human he’d have worn a trilby and had a fag hanging from his mouth! He was also the most accident prone dog you could ever hope to meet: he caught his eye on the hook of the seat belt and ate a kilo of walnuts, which meant that he had to drink pints of liquid paraffin to get things moving. Mum reckons the South Downs haven’t recovered from the mounds he deposited there – he had serious bellyache for weeks!

Shep and Sandie became firm friends. This was surprising given Sandie loathed every dog she met. In retrospect, it was good old-fashioned respect for his elders on Shep’s part. The only exception to the rule was the single floor cushion that both dogs liked. If Shep happened to be on it, Sandie would charge to the front door, barking. This would lead to Shep getting up to investigate what all the noise was about. In a flash, Sandie would sneak over to take up residency on the coveted cushion.

Sandie died aged 14. By then, I was living away from home but I was devastated, as were my parents. Shep also went through a long period of mourning: he moped around the house, lost his appetite and generally looked glum.

Now that Andrew and I were committed to the search for a dog, autumn weekends were spent contacting local rescue charities. If you’ve ever been to a rescue centre or homing charity with the intention of getting a dog, you’ll know exactly what I mean when I say it’s an emotional rollercoaster: your heart races and the hairs on your arms stand on end. The chorus of lonely barks and whines, all those desperate faces, is like a magic formula – there’s no way you’ll be going home empty-handed.

A few weeks into the search one of the charities phoned to let us know that they had a suitable dog. He was living with a family who couldn’t have him anymore. Jet was a year old and black, with grey eyes. He was part Black Labrador. Oh yes, and he had only three legs. Now you might think he wasn’t an ideal dog, but again gut instinct told us he was the one. Jet was the first dog we met in our search and we knew he was right for us. He soon learned we loved him: he was our joker, he brought a lot of humour into our lives. We used to walk him in Beckenham Place Park or go for longer trips on the South Downs. His favourite game was playing tug. He could run so fast, he made heads turn. My God, was that a three-legged dog? You should have seen the expression on people’s faces. Often we’d take him up to the Isle of Harris to visit my parents. They had a new dog called Lucy (Mum had given him to Dad for his birthday). Lucy was the most timid of the litter but with my parents’ encouragement, she soon grew in confidence. She was an amazing dog, who knew the ways of the Island. Whenever we visited, Jet and Lucy played tug o’ war with a long piece of rope that they had found washed up on the shore.

Life was settling into a routine that felt familiar and safe.

It was around this time that Andrew and I began volunteering for the Salvation Army Soup Kitchen. I can’t remember who thought of it first but we ended up joining the team together. In the early nineties homelessness in London had become a huge problem and prejudice against the homeless was rife. As we soon learnt, there were lots of different types of homeless people: there were those who lived in cardboard boxes, with dreadlocks and dead eyes; others were confused and mentally ill, with all their worldly belongings stashed in a shopping trolley or single carrier bag. There were also army veterans of all ages and businessmen who had lost everything, declared themselves bankrupt and walked away unable to face the shame. The Colonel was an army veteran who lived under the South Bank and knew an underground route into Covent Garden Theatre, where you could get the best standing positions for the proms. We also spent ages listening to a man whose wife and daughter had both died – he didn’t want to go on without them.

On Friday nights we would go and pick up the van from the Salvation Army Hall in Peckham and make a tour of the city’s homeless spots. London’s bright lights were dimmer, less jewel-like, from the vantage point of a van filled with free food for the disadvantaged. We did the South Bank, Waterloo, Regent Street and the Embankment giving out sandwiches donated by Marks & Spencer; there were urns of tea and coffee plus homemade soup prepared earlier by volunteers. To this day I can summon the smell of soup and tea and petrol, and with it memories of long nights dispensing help and hearing stories from people who I grew genuinely fond of. We only felt scared a couple of times. Once we were in the Bull Ring (a notorious underground area): on Andrew’s barked instructions, we all leapt into the van whereupon people jumped on the roof and kicked it. Andrew got us all out safely and that, thankfully, was the exception rather than the rule.

We gave out blankets and clothes before driving home, shattered, at 3am just before the dawn chorus. But I genuinely loved the work and admired people’s dignity: we would open the van doors to a crowd of people, all of whom had preferences.

‘I don’t like ham. Do you have any cheese and pickle?’

I had infinite respect for the way in which they asserted their right to choose, even if it was for mayonnaise rather than mustard.

To be perfectly honest, I’d say my altruism partly stems from a selfish interest in people; I’m interested in society’s marginalised groups. Later, when I worked with the Kurdish refugees who had fled after the first Gulf War and then the gypsies in Kent (where I set up a three-year healthcare project), I began to think about the implications for us all of those who society rejects. What does it say about us?

By now, in the summer of 1990, I was coming to the end of my health-visitors’ course. As part of my studies, I travelled to an alternative practice down in Wiltshire, where I had a two-week country placement. Wiltshire meant an escape from London’s concrete jungle and the chance to stay with our wonderful friends, Ruth and Jack. It was a blissfully hot summer; the hedgerows were full of foxgloves and apple blossom scent filled the air. I loved driving along the country lanes where sunlight flashed through the woods. Ruth and Jack lived in a cottage with an enormous garden and every day after work Jack would hand me a glass of chilled white wine made from his own grapes. Glass in hand, I would go and lie down on the lawn … and nod off! Ruth had been left severely disabled by polio and their marriage was something Andrew and I always admired and gained strength from over the years.

Fatigue had plagued me for most of that year, as had my left eye. My vision was impaired by what looked like a hair or cobweb floating in front of it but I put this down to studying too hard. When my placement came to an end, I was sorry to say goodbye to Jack and Ruth. I drove back up to the stench and noise of London to resume work.

But I didn’t feel well.

I went to see my GP with chronic backache and a problem peeing (I assumed it was a urinary infection). The GP prescribed antibiotics and sent off a specimen. The following Monday, 18 June (the day before my birthday), I woke to no feeling at all from the waist down on my right-hand side (I remember thinking, I must have cramp – I should eat some salt and I mustn’t be late for work). I got up and discovered that I could walk but I had no feeling. As usual, I jogged round the park with Jet before driving along the road to work. I didn’t want to worry anyone at work with my numb leg, so I didn’t say anything about it.

Mid-morning, I fell down the stairs. I couldn’t feel my foot – I couldn’t tell whether I’d put it down on the stair or not. I mentioned the problem to my supervisor, who immediately whisked me off to see my GP, who happened to be in the same building.

‘What do you mean, by no feeling?’ he asked.

I leant over his desk and picked up a safety pin.

‘This is what I mean …’

I proceeded to stick the pin in my leg.

The GP rang a friend and registrar at the National Hospital for Nervous Diseases to make an appointment for me to go and see him later that week on the Thursday. On my birthday (19 June), Andrew drove us to Down House in Kent, where Charles Darwin had lived and worked for 40 years. It was where he devised his Theory of Evolution and wrote On the Origin of Species. According to the guide when Darwin published his work in 1859 the experience was akin to ‘confessing a murder’, which gives some indication of its impact. The impression you take away from the house is of a playful man, who loved digging for worms and ragging with his children. My admiration for him grew.

Andrew and I had dinner in a pub but neither of us knew what to say. We went for a walk in the woods. Drugged by the scent of wild garlic and bluebells, we walked hand-in-hand in silence. Despite the sunshine, I felt bitterly cold and didn’t take my coat off all day.

On my return to hospital I was immediately admitted upstairs for more tests. I was hooked up to IV steroids to prevent inflammation and further damage to the nerves. My face blew up and I had tomato-red cheeks but there was worse to come in the form of a myelogram, which is when dye is injected into the spine to show up the spinal nerves and spinal canal. I had a major reaction to the dye, which made me more ill than I already was.

Tired and now in immense pain as if suffering from chemically induced meningitis, I lay in the hot, overcrowded ward with a splitting headache. It hurt to breathe and I couldn’t pee so I had to have a catheter. With a cloth over my eyes and my head ready to explode, I lay there as the nurses’ hand-washing routine ground into my consciousness. It was in the days before disinfectant hand gel and every few minutes one of them would walk over to the sink beside my bed, turn on the squeaking tap, wash her hands and pull out a paper towel. Rustle, rustle … I’d then hear the click as she stamped on the bin and the thud of paper as the screwed-up towel landed inside. During this time, Andrew would come and go; he was mixing caring for me, his full-time work and dashing back home to look after Jet, traversing London all the time.

Mum came to visit and gave me two new nightdresses. One was crisp Broderie Anglaise, the other a comfy long T-shirt. She also brought books and magazines, sitting beside me to read. Company was what I needed as much as anything else.

Towards the end of my week on the ward, on one particularly hot afternoon I sensed someone sitting on the bed. I can’t emphasise enough how much I felt this presence. It was before the drugs took effect and I couldn’t open my eyes because of the pain; I remember a gorgeous smell of gardenias, as if a nurse wearing perfume was sitting right beside me. I must have said something.

‘Who are you talking to?’ asked the on-duty nurse.

‘The nurse sitting on my bed,’ I replied.

‘There’s no one here apart from me and I haven’t sat on your bed,’ she told me.

For me, this was proof of my faith and it brought immense comfort.

After seven days of waiting and six sleepless nights spent tossing and turning, I woke to learn that I would be seeing the consultant on that morning’s ward round (Andrew was at work and couldn’t be there with me).

I sat up in my bed. It was far too early, of course – you never know when they will arrive nor from which end of the ward they start. Up until then I had only dealt with the Registrar. This time I was to meet my consultant. As usual the entourage arrived: the line-up included the Charge Nurse (why do they always look so deferential and play up to the pomposity of consultants?), multiple medical students, house officers and the Registrar. The beds were so close together due to overcrowding that you could put your hand out and hold the hand of a fellow patient in a neighbouring bed. Even with the flimsy curtains closed, privacy was impossible.

I heard the Registrar tell the lady next door they were moving her to a hospice. She had an inoperable brain tumour, which put things into perspective.

Doing my best to ignore the banging in my head and the nausea, I tried to sit upright.

‘Good morning,’ said the Registrar. ‘Sally, do you mind if my medical student here does a brief examination?’

‘No,’ I insisted. ‘That’s fine.’

First, he got the student to look at me and asked me not to give any clues as to my condition. The student discovered the numbness ran in a spiral pattern down my back. Following this, the consultant then told the student, ‘That’s how you can assess how truthful a patient is being – they don’t know about the spiral effect.’

Great. Someone believes me, I thought.

Then the consultant – a portly, elderly gentleman in a bow tie and half-moon glasses – stepped forward. They all tried to crowd round him but there wasn’t enough room and so a couple of hapless students (the type who get into med school because they’re brilliant but don’t realise patients are people) tried to squeeze in around the curtain, leaving it gaping to the world.

I hadn’t realised I was being examined by the consultant until I suddenly found that he was addressing me.

‘… So, having ruled out various other diseases, sarcoidosis and tumours, what we’re looking at is Multiple Sclerosis, hopefully of the relapse-remitting kind.’

I looked up to a sea of faces.

‘We will discharge you for now but you will have a recall for an MRI scan that will give us final confirmation and see if you have had any other attacks in the past.’

That was it.

As a nurse I had half-expected the diagnosis yet it still came as a shock: the world slowed down. I wanted to ask a million questions but the consultant and doctors had already swept past and were onto the next bed. No information was given; there was no opportunity for discussion.

What are the implications? I silently screamed.

It was a harsh lesson and a taste of things to come. MS is an incurable disease: the medics don’t want to spend time discussing it with you. What’s there to talk about?

I was left alone and I can honestly say I’ve never felt so alone as I did then.

Everything I’d dreamt about – the travelling, excitement, the future together we had planned – ground to a halt. No dreaming of Shangri-La. Instead I faced a life stuck … with what? As I packed and prepared to leave the ward with Andrew, who had by now arrived, the nurses came up and gave me hugs. One stopped herself mid-sentence: ‘I hope you’ll get bet – … I hope things work out well for you.’

We drove home in silence. Everything looked so different: the colours were brighter. After a week’s internment in a grey hospital I had a new vision of life, its preciousness and brutality. I couldn’t halt the flood of anxieties. What if the MS hits my eyes and I can’t see or it affects my arms and I can’t hold a pen? Will I ever be able to climb another mountain again or ride a horse?

Horse riding was something I’d learned in Scotland while studying to become a nurse. I’d drive over to the stables and go cantering across the open fields; I’d come to love the sound of hooves drumming on the ground, the roar of the horses’ breath.

There were a million unanswered questions, each one scarier than the last. I was so terrified and confused. Yet, believe it or not, amid the fear and uncertainty was a feeling of relief and with it a sort of calm: the past two years had a reason. Those mysterious symptoms weren’t laziness or my going mad – they were real, very real.

As a nurse I was able to understand the physiology of the disease but I made the choice not to inform myself too much. The more I knew, the worse my anxiety would be over what to expect. The strangely reassuring news was that I had suffered other attacks, with scarring in my cerebellum (a region of the brain), which explained the dizziness and exhaustion. I could have had it for some time and not known until it felled me.

I had an image of myself, running and climbing, partying and laughing while the black net of MS ensnared me – and finally tripped me up. My thoughts turned to Andrew and his pain when he heard the diagnosis, his utter devastation, and I knew that I would have to be strong for us both. The uncertainty of what lay ahead, the sense of imminent loss, was extremely hard.

It was also very hard for Andrew.

Andrew is a very centred person; he never complains. I kept apologising: I’m so sorry, I’m so sorry. If you’d known about this, you wouldn’t have married me.

‘There aren’t “what-ifs” in marriage,’ he told me. ‘I married you and that includes in sickness and in health – no one knows what that involves.’

I felt horribly guilty but Andrew was tremendous: he got me through it all by being so calm and loving. Later on he confessed he hadn’t known what to do. At lunch-times when I was back at the hospital having more tests, he would find a quiet church somewhere in the city to pray. Our best man, a lovely man called Adam who used to work nearby, came to see me.

‘Can you look after Andrew?’ I asked. ‘It’s harder for him than it is for me – he’s the one watching the illness.’

Back at home my fear wasn’t helped by the bombardment of contradictory advice. My GP advised lots of exercise and less sleep. Meanwhile, the MS Society sent more leaflets with news of handrails and catheters, which in retrospect was entirely unnecessary. More useful would have been day-to-day guidelines such as to be careful when taking a bath. I ran a bath and got in, scalding myself, because I couldn’t feel the temperature. The things I had always taken for granted had now vanished: my entire life would need to be reassessed.

I called my friend – a doctor, who was also one of my bridesmaids – to tell her that I’d been diagnosed with MS. She said her boyfriend had died paragliding the previous week; I felt guilty for feeling self-pity. I then heard that one of my other friends who was also training to become a health visitor had been diagnosed with Stage 3 ovarian cancer and another fellow student was to have a lung/ heart transplant as her cystic fibrosis had worsened.

So, I was the lucky one.

The good news was that the summer of 1990 was a great one for lying on the sofa. Martina Navratilova won her ninth Wimbledon and Gazza wept as England was knocked out in the World Cup semi-finals by Germany. I had the windows open and Jet (my therapy pet) beside me, keeping me company. During this time, I slept a lot. Trying to adjust to the constant pain and the strange sensation similar to having cotton wool wrapped around my legs brought a mire of emotions and confusion. What I knew was that MS doesn’t get better – in fact, it just gets worse as the condition is incurable – but I didn’t have a clue what to do.

Just then I was happy to be home with Jet.

For ages I’d had my eye on the empty greenhouse next door. After the MS attack our neighbour, a kindly old gent, offered me the use of it. He even created a little gate in the fence to make it easier for me to enter. Now I grew thousands of tomatoes – we had to buy a freezer to store them all. I also cultivated flowers from seeds in a desire to nurture and feel closer to nature.

In the October my Aunt Pat and Uncle Andy arranged for us to rent Pat’s parents’ apartment in the Canary Islands and also to borrow their car. I fell and ripped my leg to shreds on the volcanic rocks but it didn’t hurt because I still had no feeling.

So that was OK then, I remember thinking. After all, there was no point in crying. Retaining a sense of humour was crucial and was to bolster me in my darkest hours.

Chapter 4 Bumpy Road

As soon as I was able to resume work, I began a new job as a health visitor in Lewisham. I was perfectly candid about my MS with the staff – I didn’t hide my condition from anyone. Besides, I’d had to delay the probation period as I was still in hospital when I was due to start. Luckily, I’d almost made a full recovery as far as walking was concerned. I still had the strange numbness in my leg and the lower right side of my back but at least I wasn’t on medication and so I was able to start enjoying life again despite the curveball thrown at me.

As part of a primary healthcare team, it was my job to assess the needs of the individual, the family and the wider community. This involved house visits on a number of different estates. And OK, there was abuse, misery and poverty but also an amazing sense of community: the Jamaicans especially were brilliant. This was when I discovered Jamaican food: I did battle with the scales on an emperor fish and overdid jerk paste on the chops. We attended a fantastic Nigerian christening and a Chinese wedding – I was steeped in previously alien cultures. I was glad to be able to say ‘hello’ in Cantonese and know if they were being rude to me – which quite often they were.

The area was full of high-rise flats and appallingly deprived estates with broken windows and graffiti. Hallways and lifts (when they worked) stank of stale urine. I had to walk over syringes and used condoms to get up 12 flights because the lifts weren’t working … again. Sometimes the flats themselves were just as bad. Other times I would knock, the door would open and I’d find myself in a beautifully kept home. However, I did get a shock when visiting a family to discuss infection control (their daughter had just been diagnosed with lymphoma). Sitting on the settee, I felt and then spotted a large snake sliding along the back of the settee.

‘Don’t worry about the boa,’ said the dad. ‘She’s harmless.’

It was around this time that Anne Diamond’s cot death campaign was gathering momentum, with lots of TV and newspaper coverage. There was endless talk of positioning babies and low birth-weights. But the mums that I saw – Nigerian, Chinese, Jamaican, and Kurdish refugees – didn’t have cots: they were busy trying to survive. What’s more, they slept with their babies, often until they were five years old.

One day a mum covered in tattoos came to see me.

‘Can you come and see my son?’ she asked. ‘I’m worried about his language.’

Two days later, as arranged, I went to their flat. I rang the door. It opened and a little boy looked up.

‘Who the fuck are you?’

The mum quickly came to the door (his father was in prison for GBH).

‘Well,’ I observed. ‘He doesn’t seem to have any language problems.’

‘Yes, he does,’ she insisted. ‘And I don’t know where the fuck he gets it from!’

Trying to assess the effectiveness of your work as a health visitor can be difficult. There are only so many follow-up visits you can make but I knew I had secured the trust of the women on the estate when one of them introduced me by saying, ‘This is Sally. You can’t get her to lie for you, but she won’t dob you in.’

In other words, I wouldn’t report them to Benefits or Housing. I would, however, report to Social Services if I had any concerns about their kids. There were so many life-or-death situations. Children on the Child Protection Register were relatively safe; they had routine visits. It was the ‘grey areas’ – the kids who weren’t on the Register – where there was no proof of abuse that you had to worry about. They were the cases that kept you up at night. With nearly 300 families on my caseload, what could I do?

Sometimes my efforts were in vain. I once saw a young Latin-American woman whose husband was abusing her; it was a clear case of domestic violence. She was hiding her bruises and despite gentle probing would never admit it to me. It was also difficult to get her alone as she spoke very little English. Then one day she came into the health-care centre, crying. Moments later her husband charged in, wielding a kitchen knife: the three of us (and their baby) were in my office. Outside, a crowd of women and babies were in the waiting room. I handed the baby over to a nurse, who quickly vacated the room. Eventually I talked the husband down and listened to what he had to say, that he just wanted his baby. Following this, I promptly got on the phone to try and secure the wife a place in the Latin-American women’s refuge but it was all the way up in north London. The husband agreed to leave but to come back and see me the next day. Meanwhile, the woman left with the police and her baby, but the police wouldn’t take her to the refuge: they would only put her on the Tube so I gave her the money for the fare. The next thing I heard, she had taken her baby and gone back to her husband.

Throughout this time, my sanity was Jet. Before and after work, I would take him for long walks, relishing the green after a day in the grime. We were now in the spring of 1991. Tuesday morning. As usual, I took Jet for a walk before work at Beckenham Place Park, which backed onto some big estates. This was before the craze for Staffordshire Bull Terriers but there were a lot of other vicious dogs around. One moment Jet was sniffing a bush, the next thing he was being attacked by a large Alsatian – he tried to run away but it was hopeless. I shouted at the owner to control her dog and she casually called him. The Alsatian released Jet and followed his owner out of the park, leaving me to rush over and pick up my own dog. Panting, he was visibly in pain. I drove him to the vet. An hour later, my worst fears were realised: the vet informed me that the knee-joint of Jet’s one and only back leg had been fatally damaged.

‘I’m very sorry,’ he said. ‘He only had three legs to start with. You’re going to have to put him down.’

Heart-broken, I broke down and sobbed. The pain was physical: my body ached with the loss of my best friend. Some lovely friends of ours went to the house and removed all of Jet’s things before I got home so that we didn’t have to deal with the trauma of seeing them. Throughout my diagnosis, subsequent recuperation and the first few months of learning to live with MS, Jet had been my rock.

How do you learn to live with fear? I’m still looking for the answer to that one.

All I knew was that the mornings were now filled with dread as I woke to discover which bit of my body was, or wasn’t, working. Andrew and I had in a sense been ignoring the MS so that it wouldn’t become central to our lives. Instead I used to whisper my fears to Jet as a way of sharing the sadness; I’d tell him how much pain I suffered over my altered body image (I’d prided myself on my strength). He would listen patiently as I wept over lost opportunities and wagged his tail when I told him how glad I was that Andrew had travelled, had really lived and been so active before I was struck down by the disease.

Some people in our church were of the view that I should pray for a healing yet my feeling was that if I was to be healed then it would happen. Jet’s bravery was an inspiration: I only had to watch him bound across the park with his determined three-legged run to feel better about everything. He could always bring a smile to my face but now he was gone.

It would be another 20 years until I had another dog and under very different circumstances – which says a lot about Jet.

To try and make up for the loss, Andrew and I plunged ourselves into work. That August we went camping in Czechoslovakia. We drove all the way there, which allowed us the freedom to go where and when we wanted on our adventure. It was 1991 and only two years after the Berlin Wall had come down; everything was insanely cheap. The further East we went, the more deprivation we witnessed: shops became emptier and the stunning scenery was unexpectedly interrupted by a huge toxic lake or mine. Everywhere we went we encountered friendly, hospitable people and simple, but well maintained campsites. Camping, it seemed, was a Czech national pastime. We visited Wenceslas Square in Prague, where in 1969 a freedom fighter set himself alight. I remember my dad talking about him and really we went there on his behalf. Towards the end of our trip everyone started to look worried and warned us to stay close to the border. On our return, we read in an English newspaper that Mikhail Gorbachev had stood on the tanks in Red Square. The Czechs were concerned that the Russians were once more about to invade.

Our trip to Czechoslovakia proved more fruitful than expected. Nine months later, on 14 May 1992, my beautiful, dark-haired son was born in Lewisham Hospital. In the early days after my diagnosis the doctors stressed the risks of pregnancy and how it could trigger a relapse of the MS but it was a risk I was prepared to take. At the time they also told me that MS wasn’t genetic, although now of course there is evidence of a significantly higher chance of diagnosis if another family member is a sufferer. They also believe there is a female-to-female connection given the sex has a higher predisposition to the disease. This risk is one for which I feel tremendous guilt; I wouldn’t wish MS on anyone – it’s terrible but no one has found a gene for it.

There was no mistaking whose child he was: here was a mini-Andrew, who looked very similar to my husband’s maternal grandfather, whose giggle I can still hear. We christened him Peter after the patron saint of Czechoslovakia.

So now I was a mother, who also happened to have MS.

It wasn’t an easy birth – I had a long labour, an epidural, episiotomy … the works. Nor were my three days in the hospital all that comfortable. At the time breastfeeding was frowned upon: clever mums bottle-fed their babies. I’ll never forget the first long night of motherhood (who can?) as I struggled to get to grips with breastfeeding. How could I get Peter to latch on, suck, burp, latch on, suck … oh and then change him? He screamed and screamed.

‘What’s wrong with that baby?’ I overheard one of the nurses complain to her colleague.

‘It’s a breast-feeder,’ said the other.

They put a notice on the cot: Do not bottlefeed this baby. For three long days, I couldn’t move because of my stitches. At some point, I asked a passing nurse, ‘Can you take my baby?’

‘No, it’s a breast-feeder. We can’t put him in the nursery,’ came the reply.

As a nurse, I found the attitude of the nurses indefensible: I needed a gentle, comforting word. As for the family planning nurse, she didn’t stay long! Three months later, I went back in to have a general anaesthetic and my cut re-sutured.

And so life as a mother began.

Back in Catford I would push Peter through the streets in his buggy. Later, Andrew came home from work, changed out of his suit and I handed the baby over to him. We were both drowning with exhaustion from having an unsettled child; also Andrew was working very long hours. I was still madly in love with Andrew just craving time for myself and a little sleep.

How I wept over those Hallmark cards sent by kind friends with their cloying messages for happy, coping mums, not Mums like me. I remember feeling alone and very resentful: part of it, I think, was missing work and in retrospect, the effects of the MS (not that there was any time to pay attention to it back then). Not only was I a new mum, but I had chronic fatigue too and my soul was yearning for green. Though I liked London life, I missed the countryside. When Peter was six months old, I went back to work part-time but with the same caseload.

We had a big plum tree in the garden at Catford: our little patch of green in London. For Peter’s first birthday we bought him a swing that we hung under it. Around the same time, I applied for – and landed – a part-time job setting up and running a healthcare project for gypsies with a district nurse in Maidstone, Kent. Although the journey was nearly an hour long, I rejoiced in getting us both out into the countryside surroundings. As I looked back from the hill where the nursery was located, I could see the Canary Wharf Tower semi-masked by yellow, polluted haze. Andrew used to cycle to work into the thick of it. In vain, I begged him to wear a mask.

Every time we drove up to Scotland, we would return with a growing sense of gloom. As soon as we hit the old M1 and the build-up of concrete and looked at London again, I’d feel a pit of dread in my stomach. Then I’d start to cry. My longing for green had been there ever since I started work at Guy’s; it was the same sense of claustrophobia that made me go out and buy big bunches of daffodils from the local flower-seller and arrange them in vases all round the flat.

One day, on the way back from work in Maidstone I spotted a derelict property in Beckenham. It was a Victorian end-of-terrace with bow windows, a big garden and a lime tree in the front. I told Andrew to go and take a look. The next day he peered over the fence. We rang the estate agent and put in an offer without even going inside. It turned out to have sixties’ mustard nylon carpets and peeling wallpaper; also the loveliest veranda at the back, glass-roofed and covered in vines. Depending on your point of view, this was a homeowner’s dream (or nightmare). Luckily, the vendors were very understanding and allowed us to start work before completion: the whole house had to be rewired and have gas and central heating installed.

My family means everything to me. It’s full of snapshots, moments entirely unplanned and often it’s the small ones that stand out most.

Here’s one: Peter and I are sitting on the steps outside the new house on a dark morning. I’m on my way to work but we’re waiting for the gasman to show up. We’re having a ‘Paddington Bear’ breakfast: eating Marmalade sandwiches out of a suitcase (lunchbox). I’m drinking tea from the flask. Peter decides to go off exploring with his Thomas the Tank Engine torch. He opens the door to enter the house and falls into a hole in the floor. Thankfully, he isn’t hurt – just a couple of scratches – but the expression of surprise and relief on his face as I yank him out makes my heart melt.

He’s my little soldier. Still is.

At last we moved in. Even though the house was chaos, I was so much happier. What’s more, we managed to rent out the Catford flat to avoid negative equity. We put Peter’s wellies by the back door: at the age of two and three-quarters he could open the back door, put on his wellies and wander off into the walled garden.

Peter was lucky to be alive, or rather I was lucky to have him alive. Just before he was two we’d had a nasty scare that still resonated for all the usual parental reasons: the ‘what-ifs’ and the ‘if-onlys’. Peter was an allergic child. As a baby he’d suffered severe eczema and so I switched his milk to soya. One afternoon, we’d gone along to our local Turkish delicatessen to pick up a few things for supper and a snack for Peter. I bought him a carton of apple juice and some halva, which he’d never tried before: as sesame seeds are full of calcium, I thought it would be a fantastic healthy snack. It looked so delicious lying beside the counter in the tray that I couldn’t resist.

Peter was in his buggy. I paid the man, gave my son a tiny piece of halva to suck on and left the shop. He began making a choking sound as if something was stuck in his throat and so I leant over the top of the buggy and gave him his juice.

‘Take a sip, love,’ I said.

He started to scream. I rushed round to find him covered from head to toe in hives; it looked like a nettle rash. Thanks to my professional training, I recognised it at once as anaphylactic shock. The next sequence of events seemed to last forever; it was life in slow motion. I ran down the street to the cab firm with no money in my purse and told the driver: ‘I’ve got to get my son to the hospital now!’

While we were driving, Peter stopped breathing. I started to resuscitate him. The driver, a Jamaican man, kept his hand on the horn. We went through red lights, down side streets and into the hospital emergency drop-off. I picked up Peter, ran into hospital and like a miracle, found a registrar standing there and handed him Peter.

‘He’s in respiratory arrest. I think it’s an anaphylactic shock,’ I said.

I had to sign a consent form for a tracheostomy. Peter was awake but needed IV antihistamine. They checked his oxygen levels. Then the Sister asked, ‘Where’s his dad?’

Everything is OK … Oh no, they want his dad! Things aren’t OK.

That day, Andrew was working in the centre of London. I rang him and he called someone else from our church to ask, ‘Can you go and support Sally while I make my way there.’ By the time he had borrowed a car to get there, Peter was out of the resuscitation area: he was tomato-red from head to toe and couldn’t swallow because his throat was so swollen. He was placed in a ward in a cot and I was terrified to let him out of my sight. But then the curate from our church appeared: he stayed with Peter while I got something to eat (I wanted to spend the night on the paediatric ward). Back then there were no beds for parents and so after sending Andrew home to sleep (he had work in the morning), I spent the night sitting beside the cot.

The next day, as Peter was discharged with adrenalin and syringes, we were given our lives back. It was a terrifying way to find out that halva contains sesame and peanut oil and Peter is allergic to both.

I was newly pregnant at the time, with the baby due the following February: we had been sure that we wanted a sibling for Peter. Again, I was lucky and my health was excellent during the pregnancy apart from a severe pelvic muscle pain that made walking difficult but I did it. Mums do, don’t they?

* * *

It was courtesy of a gypsy that I found out that I was carrying a girl. Just before Peter’s first birthday I spotted an advert in the Nursing Times for a gypsy project in Kent:

Wanted: A Health Visitor to join a district nurse already in post to care for the travelling population of Maidstone district.

Or words to that effect. It was such a tiny advert. When I imagined rural Kent, my mind filled with fruit farms, trees and fields. I’d had enough of the concrete jungle. Great, it’s a job I can do in wellies! was my first reaction; my second thought was that establishing trust was key to this particular role and from the experience of working in Lewisham I knew this to be one of my strengths. Kent Family Health Services Authority wanted to establish outreach primary care services for traveller families in mid-Kent. Put simply, someone had carried out a study and subsequently realised the infant mortality rate in their community was way too high: something needed to be done.

Elvira was the clan’s matriarch. Traditionally, the matriarch of a site is responsible for sanctioning relations between healthcare workers and the gypsies. An amazing woman with waist-length, jet-black hair, she had a mother who lived with them whom I saw rarely but who seemed ancient as the woods. They lived in a tolerated site (illegal but hidden away, where no one would move them on) in the middle of some woods, up a dirt track. In the clearing were six mobile homes and one or two temporary caravans. Elvira’s own home was spotless: it was crowded with precious nick-nacks and china, lace curtains and a gorgeous wood-burning stove (a temporary caravan was next door for the men to sit in and ‘mess up’ after work). She had a pet jackdaw who would sit on the open door and come if called.

One day, after visiting, I tripped slightly going down the steps.

‘Careful,’ she warned. ‘Take care of your little girl in there!’

Stunned, I stopped in my tracks.

‘Sorry, I try not to do that,’ she said, looking embarrassed.

I was exactly three weeks and two days pregnant with Clara but I had no idea at the time that I was carrying my daughter. Incredible!

Three weeks before Clara was born, we moved into our new home in Beckenham. I had wanted a home-birth but was deemed too high-risk because of my MS. Luckily I’d already made friends with Diane, a senior midwife at Maidstone Hospital: a wonderful woman and a midwife in the best sense of the word. Diane believed in the benefits of water births and championed their effectiveness in pain management and the gravitational pull that enables the pelvis to open and the baby to slip out – and she was right.

On 19 February 1995, Clara shot out like a slippery fish and was placed on my chest. The difference between the births of my two children couldn’t have been more dramatic. After the skin tears and cutting I’d had to endure with Peter, the experience of an underwater birth was bliss and so empowering. For the majority of the time Andrew and I were left alone to enjoy the experience of birth in a way I’d previously thought unimaginable. Afterwards, as Clara was being checked, weighed, and swaddled, I had the best tea and toast known to woman-kind. Ah, the delights of NHS hospitality!

I spent the night on the ward. The next day Diane carried Clara out of the hospital in her car seat (it was the midwife’s job, that was the rule). Peter came running up and tried to kick her in the shins.

‘Leave my baby sister alone!’ he shouted.

I couldn’t help but feel proud.

Clara was happiest lying in her pram, looking up at the hanging vines. Our world was contained within that walled garden: we were oblivious to the racket outside – the busy main road, shoppers, cars and nightclub queues on Friday nights. Indoors, we installed double-glazing. Andrew built a tree-boat (as opposed to a tree-house) in two trees at the end of the garden so that Peter could sail to Timbuctoo. I covered the end of his boat with curtains made from cheerful striped cotton strung from a wire. It wasn’t long before Peter and his school-friend Simon discovered the best game in the world: shooting water pistols at unsuspecting passers-by on the pavement below.

And of course, we had the trains. From the tree-boat you could see the roof of the Beckenham Junction station. What more could a little boy want?

So why did I feel so blue? After the births of each of my children, I felt increasingly overwhelmed and with anxiety came depression. It wasn’t so bad with Peter but I felt its grip tighten after the birth of Clara. Trying to unravel the symptoms of MS from possible signs of post-natal depression and the normal feelings of life-change associated with motherhood can be very difficult.

My reaction to the pressures of now having two kids was an urgent need for order: I was manic. By 8am, I’d have the kids washed and fed, the kitchen swept, the dishwasher on and would start calling people, while wondering, why aren’t they being more chatty? I went to see the GP to talk about my feelings of inadequacy and frustration, my mania, and she diagnosed post-natal depression and suggested a course of anti-depressants.

Because of my MS I was allocated a community psychiatric nurse, who after two visits was signed off with stress and so that was that. I wasn’t unduly alarmed. Lots of mums suffer PND, usually in response to fatigue and a sense of being overwhelmed; it heals over time. I refused the anti-depressants and battled the depression until it lifted, which it finally did.

Looking back, I don’t think I allowed enough leeway for the MS, by which I mean that I didn’t want my condition to impact on other peoples’ attitudes towards me. Perhaps I was in denial, maybe I should have had more support – after all, MS exhaustion is the sort of exhaustion that sleep doesn’t remedy. My exhaustion (made twenty times worse by the MS) in turn triggered feelings of guilt that I wasn’t doing enough.

Driving the kids home one day, I fell asleep at the wheel. We were on a motorway. Thank God for the rumble strips at the side of the motorway, which woke me up! I parked up in the lane and took a deep breath, adrenalin coursing through my veins. If I’d known then what I know now, I’d have been able to say it’s the MS, not me. Instead lodged in my head was a comment made by the GP after my first big bout of MS.

‘You need to break this sleeping habit,’ he told me. ‘Pull yourself together.’

So I didn’t put it down to MS – I assumed it was my failure as a mother.

In retrospect, I don’t think the medical community could have helped: you have to be pretty bad to be entitled to respite care. Besides, I wanted to look after my kids and I wanted to work. I wanted it all. Why shouldn’t I?

Just as I did with Peter, when Clara was six months old I put her in a nursery and went back to work. I had mixed emotions but there was also the relief of being able to sit down, plan my day and drink a hot cup of coffee. This, however, was undermined by anxiety over how the kids were faring and guilt that I myself should be caring for them. I always felt better after I’d collected them, seen how happy they were and I learned how active they had been during the day. Anyway, I was still with them well over 50 per cent of the time, I forced myself to remember.

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