Читать книгу Finding Harmony - Sally Hyder - Страница 9
ОглавлениеOn 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.
