by Sally Hyder
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 r
ound (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 f
eeling.
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.
