by Sally Hyder
‘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.
Chapter 5
Gypsy Life
My new job in Kent was wonderful. Although I didn’t have any experience of working with travellers (or gypsies, as they prefer to be known), I had dealt with ethnic minority groups such as Kurds and Vietnamese. Gypsies were by then recognised as an ethnic minority and the project team in Kent was eager to identify the needs associated with different types of gypsy. They didn’t want to be called ‘travellers’ and therefore tarred with the same brush as the New Age and the Irish.
I quickly discovered that there are lots of different groups of gypsy and each one has its own approach to medical care. There were the New Age travellers who lived in converted buses. I met one lot who lived in tree-houses, like something out of Enid Blyton’s The Faraway Tree, with the branches disappearing into clouds (no sign of ‘Moon-Face’, ‘Mr Watzisname’ or ‘Angry Pixie’, however). These weren’t eco-warriors but tree-dwellers. Thank goodness I could still climb ladders back then! There were the Irish, who travelled with the motorway works and produced tarmac drives on the side. I also interacted with settled Romanies and most elusive of all, Romanies on the move.
There were 15 gypsy encampments, in and around Maidstone; they tended to park up on brown field sites. Driving past, you’d see the typical disarray of caravans, old vans, kids and dogs. What impressed me most and dispelled all those myths was their strict observation of the rules of hygiene; they lived in immaculate caravans and were wonderful people. OK, there were rogues too, but the gypsy community was a microcosm of society at large: hard workers and layabouts.
According to tradition, I was always served tea in the cracked cup reserved for non-gypsies (they would never dream of using a cracked item). Also, I washed my hands in a separate bowl to the one used by the gypsies. I remember asking one very elusive group of girls (who would, however, give me a call when they were nearby) why they thought non-gypsies were dirty.
‘Because you let your dogs sleep with you and eat in your house. And you wash your tea towels with your knickers.’
Great answer.
As a point of liaison between the gypsies and Maid-stone Hospital, one of my first responsibilities was to admit a six-month-old baby with bronchiolitis (inflammation of the lungs), whose mum was just 15 years old. When a child from the gypsy community is in hospital, everyone comes to visit; before you know it, there are 40 visitors. Part of my job was to explain infection control. I had to persuade the immediate family to stay in the area so we could do follow-up care and ensure the baby’s proper recovery. However, I then found out that the law had changed: gypsies could no longer park up for reasons of ill health or death.
Taking matters (OK, and the law) into my own hands, I persuaded the family to park up on a little
triangle of land managed by Savills beside the motorway. Within 12 hours, they faced the threat of eviction. I drove over there and parked my car. I was wearing a flowery dress: the police came to move the gypsies on and assumed I was one of them. But I wasn’t moving: instead I sat on the tow-bar of the caravan.
‘There’s a sick baby here who needs to see the community paediatric nurse,’ I said.
‘I could have you arrested for obstruction,’ the policeman told me, hands on hips.
‘Well, I could go to the papers and tell them that a health visitor was arrested while trying to care for a sick baby.’
‘Oh!’
But I didn’t win the argument: we did, however, gain a 24-hour reprieve. I drove ahead of the gypsies and showed them a little place where I knew they would be relatively safe. So, as well as working as a liaison with the hospital I was now expert in planning law and housing rights for gypsies and travellers. I knew all the hiding spaces: the gypsies used to follow me and I would lead them into the woods where they could pitch. Again, it goes back to my belief in social justice and a need to help those deprived of their rights. I sympathise with people whose views and lands are obstructed, sometimes even destroyed by travellers: I don’t defend that sort of ‘occupation’ but I do defend the gypsy’s right to a stable home environment.
You might say I became too involved but it wasn’t sheer bloody-mindedness that compelled me to do what I could to make a difference: the welfare of children was at stake.
The day Elvira’s mother passed away in the October of 1995 was a sad occasion for everyone. Buried with her were Romany traditions and customs that in my opinion would never return. My impression was that the community was mourning a way of life when she died. Traditionally, a gypsy body is cremated inside a caravan but this practice was illegal. However, it was customary to leave the body in the caravan and invite everyone to the wake; it is also a tradition to keep a fire alight in order that the gypsy’s spirit won’t try and return.
There are so many rituals which are fascinating to me. For example, the floral tributes are made in the shape of favourite things: the chair she sat in, the pint he drank. Again, they’re all designed to keep the ‘spirit’ happy and away from camp. Everything is done in three’s: three days, three weeks, three, six and nine months.
I took a bouquet of peach roses in honour of the many silk ones in her trailer. The morning of the funeral was misty. I parked my car and walked towards an enormous bonfire blazing away in the midst of the clearing. Milling around were hundreds of men. As I approached the crowd divided; it was like the parting of the Red Sea and the whole place went quiet. I was female, non-gypsy, and an official. Just then Elvira spotted me and came running out of her trailer, where the rest of the women had congregated.
‘I know her,’ she said. ‘Come inside, Sally.’
I went inside to pay my respects. Elvira’s mother (she was known simply as ‘mother’) was laid out according to tradition in all her finery, with pennies on her eyes. Apart from the trestle she was laid on, the small caravan had been stripped bare. Her outfit was a traditional gypsy dress of gold embroidery and lace. All the women wear heavy gold jewellery as a way of displaying their wealth and that of their husbands. Together, we stood in silence.
In the autumn of 1996, I began an MSc in Sociology of Health and Welfare at the University of Greenwich. Evening classes were held twice a week and the modules covered child protection, leadership and public health. The two years were a slog but I got my postgraduate diploma. My thesis was based on the death and dying rituals of the gypsies – in many ways it was a tribute to Elvira’s family. Shortly after I left the job in 1996 I learned they had moved into houses.
I was a truly contented Mum. Clara, now aged one, was perfectly happy to sit beside me drawing with her crayons and papers. She was an easy child, who slept and ate just as babies should. Highly determined, she reached all her milestones well ahead of schedule. From the age of two, she had clear ideas on what to wear, what to do and how to do it. She chattered away, giving a running commentary on life, her favourite colour (pink), best food (mashed potato) and why dogs were cleverer than cats.
One mystery, however, needed to be cleared up.
Peter and Clara had separate bedrooms. Then we had visitors and so we moved Clara’s cot into Peter’s room, after which the children refused to go back to separate rooms. Not long afterwards, we often found Clara in the lower bunk of Peter’s bed each morning and not in the cot where we had left her at night. Puzzled, we spied on them one evening: Peter got up, dragged the little plastic step over to the cot, helped his sister out of it and tucked her into the lower bunk.
Looking back, I’d say they were wonderful times despite my exhaustion. I’d drive home after work, pick up the kids and spray them with the garden hose to play and cool down in the intense summer heat. Sometimes I was so tired that I would stumble through the front door carrying Clara, three bags, three lunchboxes and my briefcase, unsure of what to tackle first.
In retrospect, I believe the need to do, to take on as much as is humanly possible, is all part of my battle against MS. While I’ve always been a doer – someone with a plan, a need to set myself a challenge and succeed – the urgency that comes from knowing I’m living with a degenerative disease is a driving force. To everyone who will listen, I say use it because you could lose it: climb that mountain today! You don’t know what’s around the corner: you could wake up tomorrow without the use of your limbs, it’s that simple. And while there are lots of MS sufferers who are keen to be informed of every new scientific breakthrough in the hope of finding a cure, I’d much rather get on with the day-to-day: my life, my kids.
In retrospect, I’ll admit that the MS was getting worse but I refused to give in to it. Living in the colder climes of Scotland, today I am also aware that heat exacerbates the symptoms. At the same time scientists have found those living nearer the Equator are far less likely to suffer and it’s more prevalent in northern Europe where lack of sunlight causes Vitamin D deficiency. Interestingly, at the time of writing the Scottish Parliament is debating whether to give Vitamin D supplements to schoolchildren.
By now, Peter had started at the local primary school. It was a lovely place but they refused to take responsibility for his anaphylaxis (hypersensitivity) or to ban peanuts altogether. Instead I’d have to visit at lunchtimes to check on what he was eating. Eventually, the logistics proved impossible: I simply couldn’t get there. And so in January he ended up at a prep school, where they could properly monitor his food and his allergies.
Chapter 6
Going Home
In March 1997, two years after we moved into Beckenham, Andrew and I went out for supper at our favourite Italian, leaving his mother to babysit. Andrew had been offered a fund management role in Edinburgh. Over the house special (seafood pasta) and a bottle of red, we discussed the pros and cons of the job and taking the family back to Edinburgh. To be honest, there weren’t any cons: it had always been part of our 10-year plan, conceived after Peter’s birth, to raise our kids in Scotland. We wanted to give them the green hills and the same proximity to the Scottish wilderness and good schools that we’d enjoyed and benefited from as children.
Scotland, in case you’ve never visited, has an incredible range of landscapes. The white beaches of the North are like a lost Caribbean. Typically they are deserted and you feel cheated if you arrive to find another family already there. ‘But this is our beach,’ you mutter beneath your breath as you set up camp at the opposite end of the bay.
Skye is green and lush while the Cuillins are sharp as witches’ teeth – you can’t help but think that the English countryside is so bland in comparison with the extremities of Scotland. Most of all, I love the scent of the Highlands: they smell of peat. My favourite whisky is peat-smoked, but now I’m getting carried away.
By the time the dessert trolley arrived (as always, I went for the Tiramisu), we’d raised a glass to the move.
> ‘To Scotland!’
By now, I’d moved to Health Visiting in Orpington, another special venture designed to bring health projects to those in need. It was just a 20-minute drive from home and involved routine part-time health visits. However, the more interesting part of the job was caring for those struck by poverty, unemployment and poor facilities.
As part of my role, I ran an exercise group for depressed mothers. I also organised a breakfast bus for children who would otherwise go to school on an empty stomach and established a support group (with input from Social Services) for parents struggling to cope with their kids for a variety of reasons. My job was enjoyable and our garden now a botanical garden-cum-crèche, crowded with pots and hanging baskets, trees, a rabbit hutch, tricycles and prams. Peter had made friends at school and my MS was relatively under control.
I say relatively. In reality, my balance was poor, one leg was numb and I felt permanently exhausted yet I carried on as if nothing was wrong. There were times when I just had to go to bed and sleep, but I couldn’t and then there were a few falls but I chose to ignore the pain. Instead I went on as if nothing was wrong.
In April 1997, Andrew began his new job and moved up to Edinburgh, where he stayed with his parents in Murrayfield. I remained in Beckenham to allow Peter to finish school. Meanwhile, I felt more and more excited about the prospect of going back to Edinburgh. I hadn’t realised how much I’d missed it until I imagined living among those crooked streets in full view of the spires and chimneys of the Old Town. Edinburgh is a higgledypiggledy city, full of nooks and crannies that open out onto the broad thoroughfare of Princes Street. It has elegant grey stone terraces and the National Monument on Calton Hill: our very own unfinished Parthenon. Framing the view south like an invitation to windswept freedom are the Pentland Hills. They also house a dry ski slope. You can go skiing in the morning and sailing on the Forth in the afternoon.