by Sally Hyder
Andrew has the musical genes that my lucky children have inherited and particularly now, it seems, Clara. Following the French horn incident, we talked to the music teacher at Clara’s school, who invited her to visit the music department and try out various instruments.
‘Mum, Mum, I love the trumpet!’ she ran out to tell me.
Trumpet? Where did that come from? Indeed, Clara proved so able that in a very short space of time she was playing alongside 20 other girls. There was one music stand, apparently abandoned: in fact it was where Clara was sitting (she was so small that you couldn’t see her). She was the little mascot behind her stand.
When Clara turned seven, we went to an open morning at St Mary’s music school in Edinburgh New Town. There, we were given a tour by some of the older pupils. At the end of it, Clara burst into tears and said, ‘I have to go to this school – there’s music wherever you go!’
At that point, we were encouraged to think about a chorister place. St Mary’s was where Clara’s musical talents were encouraged in earnest and where she began to excel. As a chorister there was an intensive singing regime. The choir would sing from Monday to Friday at 8.15am, school began at 9.45am and then there was choir tea at 4.30pm, followed by a service at 5pm. On Sundays, they sang twice. They were very long days for Clara. I remember dropping her off in her formal uniform of grey skirt, white shirt, tie and blazer over which she wore bright red cassocks. Turning to the au pair at the time, I asked: ‘Am I doing the right thing?’
‘Look how happy she is,’ came the reply.
Clara herself never had a moment’s doubt: she loved it. For me it was proof that despite my MS and depression and Melissa’s problems, both my older children were enjoying a happy home life while excelling at school and in their music. The day when Clara got her surplice (the white overlay that went on top of the cassock to signify she was no longer ‘in training’) was a special moment. In her five years at St Mary’s she sang in live broadcasts on the BBC and in services that were recorded – we have all the CDs she was in too.
One evening when I was saying goodnight, Clara asked: ‘Why do they have all these services when sometimes there’s only one person in the congregation?’ I said: ‘You have to think of it as part of a bigger community: if you imagine all the services taking place across the country at the same time, then you get a sense of their significance.’ It was then that Clara explained her belief system to me.
‘I speak to Jesus at home and God in the cathedral,’ she told me.
From then on she would have a list of people to pray for each day. She sometimes challenged the clergy on their sermons too, which I always found amusing.
Clara’s new school and role as a chorister was interesting for me spiritually: I’d been used to evangelical churches. Now we decided to worship as a family and so we moved to the cathedral. To be honest, I went in with a slightly cynical attitude. I had no expectations, yet I discovered that the music – Benjamin Britten’s ‘Missa Brevis for Three Trebles’ – had a similar calming effect to nature. Listening to the liturgy and the choir music was truly uplifting, a balm to the soul. To be able to gaze up at the new stained-glass window designed by Eduardo Paolozzi and the enormous cross painted with red poppies after World War I and suspended from the roof and feel the sense of history and closeness to God and my family eclipsed everything that had happened during the week.
Gradually, I would feel my mood lift: the tension in my shoulders disappeared and I’d be transported to a place where everything made sense. I’d also found Dean and Jane, two members of the clergy who made sense of my faith. Dean continues to be my spiritual director, for which I’m very grateful – it’s some journey!
In her last year Clara became one of two head choristers and skilled at playing the clàrsach (a small Scottish harp, wire-strung and a joy to listen to). Eventually she stayed on at St Mary’s as an instrumentalist which she started in the autumn of 2009 and still attends the same school.
Music is at the heart of our family: whatever our differences, it’s where we meet. At Christmas 2009, Andrew, Clara and Peter swelled the ranks in the choir of Dean’s church (he has since moved on from the cathedral). To hear my three singing and practising together was wonderful – all they needed was an alto and unfortunately my voice didn’t quite hit the right spots!
Music was Clara’s choice: we didn’t want to be pushy parents. The guiding principle in her musical upbringing and education had to be that we followed her lead. Unlike other children, she and her friends wanted to practise. In fact, we were told by the school to discourage excessive practice for fear of ruining their muscles. It was incredible to know that I happened to be the mother of a gifted child, yet somehow this gift seemed to fit with my life.
Chapter 9
Night Falls
We were in the car, driving through Wales: to give Melissa a holiday, we were staying with our friends Huw and Ali while Andrew and Clara were on a tour of the States and Canada with the cathedral choir (Peter was with Granny and Grandad Edinburgh, Andrew’s parents).
Things were desperate.
In the summer of 2008 Melissa’s still-undiagnosed autism manifested itself in such a way that in retrospect was proportionate to her age. As she grew, so did her autism. Some behavioural tics were new while others were an exaggeration of present symptoms that up to that point I hadn’t given much thought to. All day and every day, she panicked at the slightest disturbance. If the phone rang or there was a knock at the door, she jumped; if she heard a siren miles away she would start screaming. She liked things to be exactly the same and change upset her. If I said we were going to the zoo and would then have lunch, we couldn’t do it the other way round; we would have to do the activity as planned. She would only wear clothes in certain combinations and if one top was dirty, no way was she going to wear the trousers that, to her mind, went with the top.
By now Melissa had become obsessed with attempting to rub out the lines on her hands and constantly tried to rub them on her face and teeth; she was also preoccupied with water and incessantly washed her hands. If she’s anxious, she rubs her nose – it’s her first sign of distress. At least now we can spot it and intervene; she rubs it so hard that she can cause her nose to bleed and she’s terrified of blood. Well, you can see the vicious cycle: for Melissa, life was a trauma and as parents, it was upsetting to witness this.
Much later when an autism specialist likened the condition to being stuck in a burning building, I immediately grasped the gravity. You can’t talk to autism sufferers when they panic because they’re experiencing such high levels of fear and adrenalin; they’re terrified.
Huw and Ali live near Swansea and they’re a great support to Melissa, who adores them both. They are incredibly kind and even adapted their house to accommodate our needs. We were on our way to a day out at a farm park, a big treat, when Huw put on his Seekers’ CD. Melissa loves The Seekers – we used to play their CD all the time at home and sing along, rocking, rolling, riding.
‘I’m going to be sick, I’m going to be sick!’ Melissa started to scream.
We had to stop the car. Fortunately there was a public toilet near the lay-by. Melissa bolted into the disabled cubicle and began washing and drying her hands in an attempt to calm herself. After ten minutes of this (I didn’t try to stop her), she was sufficiently calm to get in the car again but the CD had to be put away.
Our Seekers’ CD at home was a studio recording whereas Huw’s version turned out to be a live audience with The Seekers: people were clapping and talking, the songs were acoustic. Spot the difference. This is what we were living with, this is how extreme it was but still we had no diagnosis. In April of that year at Melissa’s annual check-up the community doctor for children with special needs was of the view that there were characteristics matching autism. The doctor was also concerned about her need for rigid routines and mounting obsessions. Some were OK, such as her thing about monkeys. I’ve lost count of the number of sof
t toy monkeys she had – we once had a hugely successful holiday in Dorset where we went to Monkey World all day, every day.
Our lives were defined by attempts to pacify Melissa and stop her screaming. It was a full-time job. One evening I told her that Dad and I were going to Clara’s concert and Peter would be babysitting. I gave her a kiss and drove to the school, where I’d arranged to meet Andrew. By now he was working as a regeneration consultant down in London and had been delayed at work. Rather than arrive at Clara’s recital three-quarters of the way through, he’d driven straight home. He unlocked the door.
‘Hi, it’s me,’ he called out.
Melissa rushed into the hall and started screaming. Now when I say screaming, I mean hysterical screaming. She couldn’t articulate why she was screaming nor could she stop. (Obviously, it was because Andrew was supposed to be at the concert but had come home early.) Later on, he admitted to me that he had been tempted to leave the house again but where was the logic in that? One of the ways in which we cope with Melissa’s screaming is by not talking to her. This is in line with the autism specialist’s guidelines: her levels of fear and adrenalin are so advanced at this stage that to try and have a conversation is futile.
In the morning, Andrew got up and left for work at his usual time of 6.30am. He’d gone by the time Melissa appeared, bleary-eyed, in our bedroom and got into bed with me for a cuddle.
‘Look,’ she said, pointing to the empty side of the bed. ‘Dad did go to the concert!’
For Melissa, mornings start badly if she’s had a particularly vivid dream. She has a limited perception of how her mind works and identifying subtle differences in thoughts and feelings is impossible. A dream is as real as life itself. If, say, the cast of Glee refused to allow her to join in a dance performance – as in last night’s dream – then she is liable to feel rejected and sad all day. Clara has become particularly expert in the analysis of Melissa’s dreams, trying to make sense of them and translating their experience from a negative to a positive.
At the same time as dealing with Melissa’s problems, my MS was becoming ridiculous. I was getting oral steroids from my GP; I also had to self-inject Copaxone once a week and it triggered the most horrible flu-like symptoms for 24 hours plus a cracking headache. I was violently sick and couldn’t cope with the light. Effectively, I lost 24 hours in every seven days and I was on it for a year. Andrew ended up having to do the injections until I came to the conclusion that the chances of it helping my MS were so remote that I’d rather not use it. I used to take it on a Friday night and lose half the weekend with my kids. Some people with MS will try anything: special oxygenated water, French remedies, Californian drugs … I know others who have bought drugs over the Internet. ‘Snake Venom Blessed By Virgins at Dawn’ syndrome is how I would describe this hopeful attitude.
I myself run everything past Dr Weller, my consultant at the Western General Hospital.
‘What do you think?’
She always gives me an honest, thought-through response. When I was a health visitor, I used to tell my patients: ‘Look, loads of people will give you advice: choose someone you trust and filter everything through them. Don’t believe everything and don’t take everything on.’
My other key support over the years was my physiotherapist Paula Cowan. She tried everything: I’ve had Botox in my calf muscles (ouch and no jokes about foreheads and wrinkles!), electrical stimulation, stretching exercises and drug therapy. Paula also listened – a lot – as I poured out my broken heart at not being able to walk properly. I had assumed the Botox would release the spasm to the point where I could run up a hill again; that was stupid. In fact, it only meant that I didn’t drag my foot so far along the floor. That was deemed a success, but not for me.
Other than that, medically I was on my own: I was in secondary progressive. Once a year, I went to see my consultant, who said something along the lines of ‘You’re going downhill. I know I’ve promised you drug trials – you never fit the criteria. It might have to be a private prescription. There might be a new drug available in the next couple of years that might dampen the spasms, there might not.’
When I wake up in the morning I never know what part of me might not work – it’s still like living with Damocles’ sword hanging over your head. My old war wounds are getting worse. Up until this point I managed the steady deterioration of my body by dreaming up the next crazy scheme. In 2007, I learnt how to scuba dive – it was my way of managing the MS, a distraction. I found a local company who offered tuition, Deep Blue Scuba, and rang them up.
‘Can you cope with someone who can’t use her legs?’ I asked.
With a brilliant woman called Beth, I began lessons in a swimming pool in Fettes. Predictably, I took longer than everyone else. I really struggled with my hands to do the valve connections, to attach and release my Bouyancy Compensator Device but Beth was determined I would succeed – and so I did. I passed the theory test, too. By the end of two full weekends I was deemed safe enough to do open dives in Loch Long. In PADI, you have to do two open-water dives and demonstrate all the skills learnt in the pool in ‘open water’ – I dived with webbed gloves to maximise strokes and stubby fins that weighed less than flippers.
It was as if the water had healing powers: the pain in my arms and legs literally vanished. I loved the independence, the sound of my breath, just bubbles and silent blue. In Loch Long it was so dark and murky, I couldn’t see my hand in front of my face and had to do a walk-in entry. Beth was clear: we will help you to a point but you have to do all the skills yourself. At Dunbar we did a sea dive from the pier into fantastic, clear blue water. Did you know swimming through seaweed is like going through an underwater forest illuminated by shafts of sparkling sunlight?
That summer we went to Croatia so that I could dive in the crystal-clear waters of the Adriatic with its stunning fish. Everyone was so supportive and Andrew managed the children with his parents, who had come along to help. Yet faced with the climb out of the pool or the sea, I would feel the same overwhelming despair at the condition of my poor, painful body. Inevitably the change in temperature, the rush of cold air, would trigger a spasm and undo all the good work provided by the water.
I have a list of words that run through my mind whenever I’m feeling particularly despondent, words associated with MS:
Frustration
Fury
Anger
Ghost (disappear)
Pain
Grieving
Loss
Useless
Lost
Fear
Desperation
I could dive, but I could no longer swim; I’d go round and round in circles in the water, such was my life. I’d been given a wheelchair after suffering from tendonitis in my shoulder because of the pressure of using crutches. However, I could still walk and was therefore deemed mobile by the NHS, who refused to allocate me an electric wheelchair: this meant that I had no crutches, no Zimmer and no NHS wheelchair. When my aunt’s father died, I inherited his little electric wheelchair. It was a real lifesaver: now I could still get out.
My physiotherapist told me that clients say there’s a sense of relief when you get into the wheelchair. My answer to this would be relief and sadness, actually. The good news was I could go to the post-office, the hair-dresser and the local newsagent to pick up my newspaper, unaided. Once there, I could get out of the shop again, unaided. I used the wheelchair for the first time to go to the cinema and suddenly the MS stopped being hidden: I had a piece of equipment and people were opening doors for me. The sad thing is that in my dreams I can walk and run; I am never in the chair. And so for a split second when I wake in the mornings, I have forgotten until the pain and spasms hit me.
I began to use the disabled parking space in Clara’s old school. One day a teacher accused me, quite angrily, of misusing the space. When I told him I had MS, he replied: ‘People like you shouldn’t even have children!’ That was kind.
The w
heelchair brought its own frustrations, with which I struggle to this day. Public life wasn’t designed for disabled people: the check-out counters are too high, making it impossible to give the cashier your purse; pavements are uneven (and sometimes disappear), there are no ramps, there isn’t enough room between racks in department stores to access the clothes, thoughtless morons park in the disabled spaces on the premise of, Oh I’m just popping in … You see them jumping out of their Audis and running into the shop.
I can’t run but I’ve driven all the way to the shopping centre for a treat with Clara and now I’m going to have to sit and wait for you to run out with your three tonnes of shopping. Usually, I confront these people with, ‘I think you’ve forgotten to display your blue disc.’ Worse still, they’re using their old mum’s disc.
In fact, driving was becoming increasingly difficult. Previously I had trouble with it in the normal way because I couldn’t apply enough pressure on the brakes to stop. My leg shook and so I had started to use hand controls but because of the weight of the car, it was now uncomfortable to drive and so getting anywhere grew harder and harder. Also, I panicked about leaving the house alone and I worried about what might happen if I needed help. The fact is, if you drop your purse or get stuck and can’t get up the kerb then you have to ask someone to help, you have to explain why and you are dependent on strangers. I hated feeling vulnerable and dependent; it only added to my suffocating sense of disempowerment. What’s more, I loathed being pushed in the wheelchair and still do – I’m very intolerant of it.
But I did have a new kitchen. In the spring of 2007, we had the house remodelled to accommodate the eventuality of me being in a wheelchair. It was either that or move to a much bigger house but we liked our house and the neighbourhood. We didn’t want to move and so we worked with an occupational therapist on the redesign. The downstairs was pushed out to add an extra master bedroom (mine and Andrew’s) and en suite for us. Our kitchen was extended and we also added a new family bathroom and utility room. We went from being a fivebed, one-bathroom house to a six-bed, three-bathroom property, with one bedroom serving as an office.