How my life was tripped up by MS
This book is dedicated to
my niece Lydia Mosse who, aged thirteen,
suggested I should write an autobiography
who was a nurse at Amberley House Nursing Home and suggested I write a book about having multiple sclerosis (MS) because I was a journalist and intelligent!
I want to express my thanks to
Sue Pettit who took my dictation for this book,
helping me when I was stuck for words,
but also apparently enjoying the work we did together.
She was an excellent amanuensis;
Ben Martin also helped by editing the early work into chapters.
Introduction: How my life was tripped up by MS.
-The irony that my initials are MS has not gone unremarked upon and I relish it.
We, all the family – me, Adrian and our four sons set off to Lundy Bay. It was 1988 and I was 37. We walked from the car park for about half a mile to the bay. We timed it so the tide was just coming in and so the boys and Adrian could swim in the sandy bit of the bay. The rest of the bay was covered in rocks. I was tired and decided Oscar, aged about 3, and I would walk along the path above the sea. We walked uphill some way and I remember looking down at the sea far below me. At this point Oscar decided to run back the way we came. I was worried that he would meet dogs coming up the path so I ran after him. I immediately tripped over – I thought I was going to go over the cliff. I knew that in my duffle coat I couldn’t avoid drowning.
Luckily there was a lip which stopped me falling. I was able to get up and carry on my pursuit of Oscar.
That horrendous moment has stayed with me since it happened. I could have fallen into the sea and drowned. No one would have seen me; Oscar would have been confused that I had disappeared and if Adrian and the boys had found him they would have no idea what had happened to me. This is a terrifying thought.
When I tripped over I did not know that I had MS.
When I was thirteen I had a lumbar puncture, then the easiest way of diagnosing MS. When I asked my father what the result was he had been told by doctors not to tell me I had MS, so to spare me he said I had Royal Free disease. This is in fact a genuine illness but I didn’t believe him and I always called it My Illness.
We were certainly quite a happy family and mine was a happy childhood; I was the second of four children, three girls and a boy. Both my parents came from dysfunctional families and so were determined that their family would function well.
Dad was the sixth child of seven, with five brothers and one sister. He dearly loved his mother who was called Mary, and whose name he was determined I should have. His father was a tooth surgeon and had lots of jaw operations following the First World War. His weakness was that he tended to lose his temper and hit whichever child was aggravating him. At that time his mother would call for my father to talk his father down. As a result my father was wary of getting angry with all of us who in fact sometimes needed disciplining.
My mother’s family came from Australia. She had three brothers, and a sister who contracted meningitis on the journey to England; she was mentally affected and lived in a home until she died. My mother’s father was very depressed and committed suicide when she was fifteen. She first discovered this by reading about it in the local paper. Her favourite brother, Frank, was a gay actor and he committed suicide around the time I was born. My mother never got on with her mother and was brought up by an illiterate nanny from Tasmania. Mum loved her very much. It is not surprising that our family of four children under five was a relatively happy one, and did function well.
In my thirties I talked to my mother about what sort of baby and child I had been. She remembered that when I was very little she had read about how mothers shouldn’t wrap their babies up too warmly. So with this information in mind she didn’t wrap me up too much, and then put me out in my pram in the snow to sleep. As a result I got pneumonia and was saved by penicillin. My mother also told me that as a young child I hated wetting the bed; this proves another ironical twist considering that my MS has made me doubly incontinent.
As a young child I used to embrace all sorts of situations with gusto. The gusto showed when I was about fifteen years old at Francis Holland School. On April 1st I organised my whole class to put cotton wool around the electric bell-clangers. I particularly disliked the teacher in charge of ringing the bells. As we were the only class not to say that we had done it, it was deduced that we were the culprits. When I left school that day I shook hands with a teacher who said “Congratulations!” I said “What for?” and she said “For snarling up the bells”.
I also showed my gusto when we went on holidays. In the winter we used to go skiing in Wengen, in Switzerland. I loved skiing. My mother used to love skiing but in her thirties she felt she was too old to do it, and so she would take a sledge to go shopping and then cook our meals in the flat that we hired. My sisters who are in their fifties and sixties go skiing now, and Mum, in fact, missed a chance that she would have liked; and now I am unable to ski which means I am missing the chance to ski due to my MS.
Above all I loved going to Singleton in North Cornwall. The house was five minutes away from Daymer Bay, where I loved to swim and build sand-castles. I have many memories of swimming, made all the more wonderful when the tide was in. My mother had a mantra “You never regret a swim”.
While we were on the beach Dad was at St. Enodoc playing golf. I remember him coming into the kitchen in London when I was three and saying that Singleton now was his. Until then we had rented Singleton from an elderly spinster called Mabel Smith. She wanted to sell the house so Dad offered to buy it, asking her to lend him the money for it. Before she died he had arranged to borrow the money from her. When she died the solicitor was amazed to find that the vendor had lent the money to the buyer. This is typical of my father who also had great gusto!
I always loved going to Singleton. It involved a six or seven hour journey from London. Later, when we had a dog called Katie, she would sit peaceably in the car until, five minutes away from Singleton, we arrived at Polzeath, she would smell the sea and start barking and wagging her tail. Then five minutes later when we arrived at Singleton and opened the car door she would run out, round the garden, barking and wagging her tail. It was how we all felt after this long journey.
One year my mother bought Jessica and me blue and red swimming costumes with short skirts making them look like ballet dancers’ tutus. We decided, with Jessica’s friends, Vicky and Tessa, to do a ballet on the lawn outside Singleton. We had a record of Swan Lake and we managed to take the record player out through the window to play it. As Oliver, my brother, and Jonny, our friend, did not wish to be ballet dancers they became musical directors.
Some winters we went to Singleton for Christmas. While we were there I organised Jessica, my older sister, and Jonny, and anyone else who was interested, to be in plays that were held in the large upstairs hall. The two I remember clearly are The Mousetrap by Agatha Christie and one I made up called Lord and Lady Nithdale. Needless to say Jonny and I were the Lord and Lady themselves. All I can remember is that Jonny was not a born actor and so I had great difficulty teaching him how to say with feeling “Mercy, mercy I’ll become a Catholic if you save my life”. The play finished with him giving me a kiss – rather racy for an eight-year-old.
The adults, including Miss Lamb, came to these plays and we made illustrated programmes for them, Miss Lamb said she kept all the programmes in her attic, and we sold sweets at enlarged prices to make a profit.
After The Mousetrap my father booked for all of us to go and see it in London. Unfortunately he chose the day in 1966 that England played Germany in the World Cup Final. A number of people smuggled in radios to the theatre and Oliver was certainly furious at having to go.
I would go to Singleton whenever I could but sometimes my parents took us to France which, again, involved long journeys in our Alvis. We went to a house owned by a friend of my father. We used to play with the French children until, one day, they disappeared. It turned out they had gone back to school so Mum had the great idea that we could go to the French school. We did this for a few weeks and they made use of our Englishness in the English classes. Mum was very amused that my sister had to read about Shelley at Eton. At the playtime at school the girls all walked around. We tried sitting down but that meant all the boys would circle around us trying to look up our skirts.
The MS started when I was about eleven and I woke up with a swollen eye which the doctor called optic neuritis. Looking back this is often the way MS starts. After that I noticed I was paralysed in half my face and then, aged twelve, I fell down the stairs at home and then I had ballet at school and found I couldn’t do the pas de chat to the left. On the way home I fell on the stairs at the tube station. I told my father about this. He was a doctor and sent me to a neurologist, Roger Bannister, who held my hands and got me to hop on my right leg which was fine, and then on my left leg which gave way. He said I probably had a demyelinating sclerosis. He said it would last for three months and then with luck would go away and if it came back later we would deal with it then. He was right; in three months it went, and now we’re dealing with it as it has come back.
When I was thinking of applying to university I had no trouble in choosing Exeter University because it was the nearest to Singleton. I hoped to meet someone with a car and in fact I did, so Singleton became an occasional weekend destination. Aware of this my parents put the electricity on a meter so that we had to pay for the electricity we used. Now all my friends who I still know from university say that I walked dragging one leg. I was never aware of this but in fact it must have been caused by the early onset of MS.
During the last year at Exeter I became involved with Rag, i.e. raising money for charity. To celebrate the end of Rag Week we organised a Drag Disco. At the disco the judges would ask suitable candidates to keep dancing. I went to the Drag Disco making no effort except that I hadn’t washed my hair for four days and I borrowed my flatmate Tony’s suit. I put a cigarette in my mouth and that was all I did. Judges kept coming up to me and telling me to keep dancing. At the end I realised that I was the only “man” dancing and with me was a chap over six feet tall who had taken a lot of trouble with his make-up and wore false eyelashes and a mini-skirt! While he was a classic drag queen, did that make me a classic drag king…? Unfortunately photographs were not commonly taken in those days so there are none.
After university I became a journalist on a local paper and have enjoyed writing ever since.