by Sally Hyder
Our favourite family walk was a slow stroll up to the top of Arthur’s Seat. This is the main peak of the group of hills forming Holyrood Park in the centre of the city. It’s a wild piece of high land forged from an extinct volcano (approximately 350 million years old), a mile east of the castle. The hill rises 251 metres above the city and it’s easy to climb. We used to sit on the top, munching bananas and raisins, while taking in the view. Peter would then run all the way down as Clara happily chatted away. The name, so they say, is based on a legend of King Arthur, which in itself offered plenty of opportunities for storytelling.
So began our new life. Andrew was working Monday to Friday up in Edinburgh and flying down at the weekends, armed with brochures from estate agents. We’d only just finished doing up the house in Beckenham when he suddenly came on the phone to announce excitedly, ‘I’ve found a five-bedroom house. It’s detached with a garden; it needs work. I know you haven’t seen it, but I want to put an offer in …’ Which was exactly what he did.
I wasn’t to see the house until just before our move, during Peter’s half term. That May, we drove the kids up to Edinburgh. By this time the children were great long-distance travellers. In the days before electronic gadgetry we relied a lot on storytelling, playing endless rounds of I Spy and making up words from number plates, spotting different coloured cars and of course, that old favourite: counting the number of Eddie Stobart lorries we passed on the road.
Andrew drove us north of the city, past his old school and the Galleries of Modern Art to an area called Black-hall. He turned right into a wide road that I immediately liked: it was leafy and peaceful, with a view of the castle.
‘It’s the perfect place for watching Hogmanay fireworks,’ I told him (and as it turned out, we always end up having a street party. Someone puts the radio on and everyone takes drinks outside).
We pulled up outside a solid detached house with a flowering cherry and two enormous rhododendron bushes in the front. It was white with a Mediterranean feel – the last thing you’d expect of Edinburgh.
‘It’s very small,’ was Peter’s first comment.
From a child’s perspective it was small because there was no top floor: it’s a bungalow. We call it ‘the Tardis’. In fact, it’s deceptively big inside and just over 100 years old, with wonderfully high ceilings that give an airy, spacious feel. I’m always amused by the name of the street: Forthview. You can’t see the Forth from here but it’s a nice idea. However, as we were about to discover, the house was also a real hovel. The previous owners had kept Alsatians and ferrets; they were heavy smokers and everything was stained or painted brown. At least the rooms were large and there was a garden (perfect for a trampoline, sandpit and playing football), with cherry, crab apple, pear and apple trees.
‘Can you see the potential?’ asked Andrew, glancing at me.
The prospect of doing up another house was daunting. It was as though we were back at the bottom of Everest, preparing for our ascent. Here we go again, I thought, preparing myself to live in a building site while a new boiler, gas, electrics, plastering, a paint job, kitchen refurbishment and bathroom installation all took place although of course, we couldn’t afford to do everything at once.
‘Yes,’ I squeezed his hand. ‘I can see the potential.’
He smiled.
Just then a neighbour appeared over part of the shared privet hedge to introduce himself.
‘Hi, I’m Mark,’ he said, ‘and I’m absolutely ecstatic you’re moving in!’
The previous owners, it seemed, had done nothing to facilitate good neighbourly relations. As soon as we moved in – June 1998 – we immediately had everyone round for tea to introduce ourselves and say hello. They were very welcoming.
Leaving Kent was easy. More of a wrench than anticipated, though, was saying goodbye to friends and my job (I had been in line for promotion and really enjoyed my years there). Our friends from church gave us a photo of the entire congregation and one Sunday afternoon we had a party in the church hall – I had been leader of the youth group, Pathfinders. They gave me a wonderful video with everyone in it: there were images of the church, the congregation and their memories.
There was an interesting smell of rotten egg sandwiches to greet us on arrival in Scotland as Peter’s lunchbox was mistakenly packed among the boxes. He was very sad to leave his tree-boat behind! We travelled up separately, arrived before the removal team and then waited and waited. By 7pm, the van still hadn’t turned up and eventually they got a message through to let us know that they had broken down. Luckily we were able to spend the night at Andrew’s parents’ house.
The next day we went to see our new house again and it stank. Layer upon layer of grease had to be scraped off the kitchen and as for the nicotine … well, there was no way we would be moving our children into an ashtray! Instead my long-suffering in-laws let us stay on with them. Over the next three days we went through three bottles of bleach, 10 pairs of rubber gloves and a mountain of wire wool. At that point we could do nothing about the décor, not even the room with Teenage Mutant Ninja Turtles’ wallpaper half-painted over, but at least we could remove the stinking carpet and treat the floor below with bleach. Evidently, this was the room in which the ferrets and dog had been left when the owners went out. Eventually we were able to move in.
The next task was to create a happy environment for the kids so that they would feel settled. Upstairs in the loft, Andrew built a bed area for Clara. Afterwards, I put up yellow-and-blue gingham curtains and a canopy over the bed, with drapes that hung down and were secured with big blue ribbons. Andrew made bookshelves with cushions on the top so that Clara could see Edinburgh Castle from her window. Peter had bunk beds: Andrew boarded up the sides and cut out portholes to transform them into a boat. He created a bow with cords attached so Peter could pull them from his bed on the top to create a ferry-like entry. Meanwhile, I made sail curtains and swag-bag cushions. Every night, Peter would lower the bow, climb into bed and set sail for the Land of Nod.
To make ends meet, we took in foreign students, usually two at a time. We had all sorts of nationalities and personalities. There was a crazy Russian boy who only took a shower when I pushed him in and turned on the taps; he wore a sailor cap everywhere. During one evening meal, he stunned us with the announcement: ‘When I leave school, I going to be a nuclear officer in Navy!’ He shared with a lovely Spaniard, who was eternally patient.
We had students who would chat with us, others who cried. One girl from Mexico managed to max out her new credit card on soft toys during the first week. It transpired that at home she lived in a gated community, with a chauffeur to take her to school. She had never carried money until she was sent to Scotland hence the adventure with the card. We also took in a boy from Mexico whose mother was terrified he would miss his plane (apparently he had a history of it). Despite warnings from us about luggage rules, the students frequently packed at the last minute only to discover that they had overbought and had no space: the number of parcels I had to send on was ridiculous. It was mostly good fun, however, and the children developed a good knowledge of geography and foreign cultures. Meal times were always enjoyable as we encouraged everyone to listen to each other and swap stories.
Peter (who by then was six) began school at The Edinburgh Academy, which we had visited during the May break. His favourite choice, it was a small school that he christened his ‘sunshine school’ as the sun shone on the day when we went to view. Initially, Clara was at home and then when I started work she attended Mr Squirrels Nursery. Later, aged three, she went to the Edinburgh Academy Nursery.
At the same time as settling in and finding schools and nurseries, I was working part-time as an agency nurse, doing homecare. It was varied and I could choose my own shifts and work when I was able to do so. My favourite job during that time was caring for a famous organist, who was terminally ill. On one of his better days he gave my two-year-old her first piano lesson. He was full of stori
es and ultimately I gained as much from caring for him as he received. Although I missed my friends and my old job, we were so happy to be in Edinburgh: the children were settled, Andrew was enjoying his new position and we loved being able to jump in the car and escape to the countryside in a matter of minutes.
But then the MS hit with a vengeance. The year we moved up, I had four relapses. When you relapse, you lose something and relapses can last anything from a few days to a few months. This time, I lost the feeling and use of parts of my right side. In the early days they put you on high doses of intravenous steroids over a three-day period. The steroids reduce inflammation, thereby reducing nerve damage. I hated it: as soon as I was hooked up and the steroids began pumping into my body, my mouth filled with a bitter taste that I likened to neat gin. Yes, disgusting! After the first session I knew to take in lots of chewing gum and mints, like all the other patients. The treatment leaves you feeling unwell for days, a bit like having chemo without the sickness involved. Latterly, I was given oral steroids, which meant I didn’t need to be admitted to hospital. Gradually, over a period of weeks or months, you remit or improve but you never get back what you’ve lost completely. As a rule you can never recover your physical self – your better self, your whole self. Once it’s gone, it’s gone forever.
While working with the Huntington’s Disease Society, I noticed a severe prickling in my right arm; it became so bad that I couldn’t use it – I had no control over it. One morning I woke to a nightmare from the past: my right arm wasn’t working and I couldn’t hold or lift anything. Clara, now four, was bewildered as I tried to explain why I couldn’t brush her glorious waist-length hair. It broke my heart.
‘You’ll have to brush it this morning, darling,’ I told her as gently as I could, talking her through the process. ‘That’s right. From the top, pull the brush. Yes, you’ve got it. Now again …’
A friend drove the kids to school and then it was a case of off to the Western General for more steroids. If you really want to know what it’s like, I suggest you tie your hand behind your back to see what you can and can’t do. Being unable to do things for myself or others was intensely frustrating: I had to learn to use my left hand … and fast!
Gradually the sensation in my arm came back but it was very weak, with severe nerve pain. Temporarily, I also lost the ability to speak: my mouth was saggy and my tongue lost its muscle power. Now, as anyone who knows me will tell you, I can talk for Scotland! I talk a lot, too much perhaps. So, not to be able to talk was intensely distressing: bedtime stories, conversations with the children, reassurance, answering the telephone were all impossible. This ushered in more heartache and distress but the steroids and time healed all although one side of my mouth remains a strange shape. My smile is a little lopsided (I think I am the only one who notices, though).
Each time something goes, another bit of the fighting spirit is bashed; your whole being feels battered and bruised. The trouble with MS is that every single part of the body has nerves and so any area can be affected. Like I said, it’s a war.
How can I describe it? Imagine putting on a pair of gloves with cut glass inside – that’s about it. It was the same sensation with my right foot, as though I was stepping onto cut glass. The pain has never left and is difficult to control – despite the best care, drugs and intentions it is barely under control. All this left me feeling angry and useless but I carried on.
I was overjoyed when, as planned, I became pregnant with our third child. On 6 May 1999, two years after moving back up to Scotland (when the country voted to have its own parliament), I successfully gave birth to our second daughter, Melissa. I enjoyed all my pregnancies. Though tired, I took great pleasure in the knowledge and physical certainty that my body was functioning properly. I’d recovered as much as I could from the relapses and despite my failing health, I was creating new life. Miraculously, the body protects the foetus despite the MS. There had been no indication there would be anything different about this baby. Nor, apart from the emotional lows, was this pregnancy any different to the others besides a serious dose of flu. When I was four months pregnant, I had serious high-temperature and rigours that come with real flu. It started on Boxing Day and by early January I was on a course of antibiotics for a chest infection.
The birth was fast and fabulous. In Edinburgh, I wasn’t allowed to deliver in the water but my labour could take place in it. We almost broke the rules and had very little time to get out! As the midwives ripped open sterile packs, there was water everywhere and then out she came. All three of us fell asleep, wrapped up and warm.
Melissa was smaller than my other babies: she weighed 7lb 8oz and I had a bit of a problem with feeding her. Peter and Clara, I’d breastfed ad nauseam – I loved the physical bond and my babies enjoyed my milk. But Melissa was slow to put on weight (just an ounce at a time) and for a mother whose son had fed so much that he put on eight ounces in one week, it came as a shock. I was used to big, thriving babies and so eventually, I ended up supplementing with baby milk to build her up, but still she struggled to suck and feed. I took her home and she joined our high-volume, busy, loving family. Peter and Clara adored their new sister: they were both keen to help and when she finally started on bottles they loved to feed her. We used to joke that Melissa was already capable of making her own decisions … and taking off. I once came into the kitchen, having left Melissa there, to find an empty room.
‘Melissa, Melissa …’
I began to panic but it turned out that she had rolled underneath the sideboard and was lying there, gurgling away happily.
Then everything changed. The autumn after Melissa was born, I’d gone back to work at the Huntington Disease Society as usual. On a foggy morning on the way to the nursery I took Melissa to the GP for her second set of injections: Diptheria, Tetanus, Whooping Cough and Polio. It’s a lot of vaccines to give a small baby, but that’s how we do it. It was at an earlier stage than my other two, but the guidelines had changed.
Mid-morning, I received a telephone call from the nursery.
‘Sally! Hello, sorry to call,’ said the woman in charge of the baby room. ‘But something’s wrong with Melissa. She’s got cold hands and feet and a strange rash.’
Having endured the earlier horror of Peter’s anaphylactic shock, I rushed over to the nursery as fast as I could. Melissa was lying in her cot with a bulging fontanelle (the soft spot on her skull) and was covered in red spots. Immediately I drove her back to the GP, where they gave her a shot of antibiotics in case it was meningitis and sent us to the Sick Children’s Hospital in an ambulance, blue light flashing. But it wasn’t meningitis. In fact, the doctors were unable to make a satisfactory diagnosis and we went home. Melissa recovered from the rash and her body temperature stabilised but as Andrew commented, it was as if someone had flipped a switch: we had another four admissions for the same symptoms of unexplained vomiting, rash and high temperatures. I was overcome with worry and concern, but no one could give me an explanation. What’s more, I began to fear the doctors might think that I was doing something to cause my child’s strange symptoms. It was all so mysterious.
That summer, we went on holiday to France. Rather than our usual camping, we rented a lovely gîte right at the bottom of Brittany. It was less a holiday than an exercise in endurance as Andrew entertained Peter and Clara while I tried my hardest to comfort Melissa, who screamed and screamed. The fact that she had been such a contented baby made it all the more heart-breaking.
Then she fell silent. For the next six months Melissa said nothing. She did nothing either – my dad called her a ‘Russian doll’. Yet no one believed me when I insisted there was a problem. I spent hours putting a rattle in her hand and would shake it to teach her that if she picked it up and shook it, then it would rattle for her. Other times, I would look her in the eye, we would all sing and chat to her or try the physical stimulation of hugs and spinning but all the while there was nothing, no response. Glassy-eyed, she was compl
etely cut-off.
I felt increasingly depressed and coupled with the despair was an anxiety over Melissa’s future. In some way I must be to blame for her condition or had, at the very least, exacerbated it, I felt. Later on, when I was able to discuss the events leading up to her change with medical professionals, I realised my responses were similar to a sort of bereavement: shock, disbelief, a sense of being cut off from the world, of no one understanding what it’s like to have your child’s future taken away. As a fellow parent once said of her own child, it was as if we had packed for one journey and found ourselves at the wrong destination.
Meanwhile, the trauma of Melissa’s condition reverberated through our family and put pressure on my relationship with everyone else. Being too young to understand, the elder children were oblivious to my worries and concerns but I was overly tired and continually fought to get help for my youngest. The demands made by a new baby on her mother are always enormous and when the infant has developmental problems too, it’s a hundred times worse.
When Melissa was nine months old, I took her to the GP for her nine-month check. I understood the drill and knew what she ought to be doing. After all, I was a mum of three and a health visitor.
‘Look,’ I said to the health visitor. ‘She’s not rolling, she’s not sitting up, she’s not babbling …’
The health visitor, a woman younger than me, did the raisin test. This will be familiar to mums everywhere: does your child have the dexterity to pick up a single raisin? Melissa banged the health visitor’s hand.
‘I’m not surprised,’ observed the health visitor. ‘It’s a very boring job to ask a little girl to do.’
I wanted to scream. Not only did Melissa not have a pincer grip (the ability to hold something small between her thumb and forefinger), she didn’t even have a palmer grip (the dexterity to hold things without using her fingers); she couldn’t grip anything. She couldn’t use her hands. Why wasn’t the health visitor taking this lack of motor skills at nine months seriously? Then I went in to see my GP, the same one who had seen me through my pregnancy and treated my other two for the usual coughs and childhood ailments.
