Читать книгу Finding Harmony: The remarkable dog that helped a family through the darkest of times - Sally Hyder - Страница 9

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.