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.
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
