by Sally Hyder
I came to dread the end of each session: I’d walk away from the house down the long drive feeling as though I’d been tossed out into the world to fend for myself. Already I’d feel the loss of my counsellor’s reassuring voice, the loss of the building itself; I felt safe there with someone to look after Melissa and someone to listen to me. I’d get in the car, turn the key in the ignition and feel utterly, hopelessly alone. And I couldn’t leave without glancing back at the building, knowing they had moved on to help the next depressed mum.
I’d been forgotten. I hated everyone, I resented being abandoned – how dare they?
One day I woke to find the sun had gone out: everything was black. I had reached the depths of my despair and could no longer see a way through the depression clouding me for so long; I just wanted it all to end.
The big kids went off to school and with Melissa beside me, I sat down at the kitchen table and wrote an account of my despair. Afterwards I fed Melissa and put her in the car. I had a counselling session at 11am, after which I’d been asked to take my grandmother from Fife to hospital. Somehow the knowledge that I knew what to do brought a sense of incredible calm; I felt calmer than in months. Now the raging storm had subsided: I was to end the pain for everyone and the world would be a better place without me.
‘How are you today?’ asked the counsellor, waiting for me to arrange myself on the chair.
I crossed my legs, uncrossed them and fixed my gaze on the tree straight ahead. It had shed all its leaves.
‘I’ve got a plan,’ I told her. ‘I’m going to take Paracetamol, go to the Forth Road Bridge and jump off it.’
This was all quite matter of fact: indeed, I felt a sense of icy calm. She listened and nodded, then began talking – lots and lots of things that I don’t remember. Then through the fog of words came the mention of my son’s name: And what would that teach Peter about coping? How will he cope when things get tough if this is what his mother has taught him?
I was furious: I hated her for doing this to me – for using guilt and motherhood to stop me leaving them. At the end, I left the session seething. Though I still had ‘The Plan’, I knew in the back of my mind she had won.
What will the children learn from this?
Her words echoed round and round my head as I got into the car. I collected the other children from school, cooked sausages and mash and somehow carried on with day-to-day living. In retrospect, my counsellor was reminding me of all the things I’d said in past sessions about wishing to be a positive role model for my kids; I wanted to teach them how to deal with things in an optimistic way. She was reiterating my words.
The next session was rocky. I was still angry – in fact, I filled another two pages with bitter words about how I felt. What’s more, I resented my counsellor’s emotional tone and was furious with her for talking me down.
‘Why did you let me go?’ I demanded to know.
I made her listen to what I’d written, repeating how angry I felt.
‘I knew it was safe,’ she told me. ‘The alternative would have been to keep you here, to have you sectioned and call Andrew.’
With all her experience she had felt certain that I wouldn’t do something stupid and she was right. Ironically, this was the start of my recovery. She persuaded me that I really did need anti-depressants and so we struck a deal. She would commit to being my personal counsellor while I took the medication. Recovery was long and protracted but gradually we increased the distance between appointments from weekly to fortnightly and I slowly reduced the anti-depressants. Finally, after too many years I left counselling in 2003.
‘You’re the only one left that needs to forgive Sally,’ were some of the last wise words she said to me.
I never went back for the last session, I just couldn’t – I didn’t want to force the final severance. Every week I’d find an excuse not to go until six months became a year and it was evident enough time had passed for both sides to acknowledge we had reached the end of our path. However, I’m proud to say that one year on, I chaired a committee and we held a fundraising ball for the Bluebell Project (as the PND project had been renamed). It was a great success and made me see how far I’d come and how well I was. Now it was time to move on from those dark days but I will always remember the people who helped me through.
Chapter 8
Fighting for Melissa
I was now committed to getting Melissa to the next stage: I wanted all the normal things for her, or at least some of them. At the recommendation of Caroline, a friend whose daughter is severely physically disabled, I took her to Bridgwater’s Brainwave – a fantastic charity in Somerset that is dedicated to helping anyone with any sort of brain injury who can benefit from cognitive and physical exercise programmes. ‘Brain injury’ doesn’t have to be the result of an accident but can be due to illness, birth or genetics; the definition is intentionally wide. The charity has purpose-built units for those who have to travel long-distance and need somewhere to stay.
Andrew was on business in London and so I drove down with Melissa (our other two were looked after by their grandparents and the au pair) and he came across by train; we picked him up from the station. It was a very hot day. That evening, with Melissa in her ‘Major Buggy’ – a sort of pushchair for bigger children with mobility issues – we took a lovely stroll beside a canal. Afterwards we enjoyed a pub meal during which Melissa was royally entertained by ducks and hens in the garden. Again, we had found an oasis of green. We also did a walk in the Chiltern Hills that day, which raised our spirits.
The next day – Assessment Day – came and with it an endless round of questions followed by discussion. Afterwards they videoed Melissa attempting various tasks and more questions; we had a break for lunch and yet more analysis of Melissa and her abilities. We were asked what we would like to gain for Melissa. I found the process increasingly difficult because of her visible distress; they needed Melissa to try the tasks to see what she could (and couldn’t) do, but the pressure of having to do them upset her. It transpired because she hadn’t started crawling, part of her brain was not properly developed; she also had weak cheek and mouth muscles. Her responses to pain were delayed and she was intolerant of noise and textures. Both of us found the questions and analysis difficult but also reassuring as this was something we could do for Melissa and already, the observations were proving helpful to us.
The following day we were shown a series of exercises devised by the physiotherapists and child development workers and taken through them. After lunch, we had to do the programme while being videoed and then we were shown the video and given the equipment we needed, including a wobble board (a square plastic board with a cylinder underneath that enables it to rock, or wobble). Following this, we were sent on our way with a copy of the exercise programme and video for the volunteers.
Six days out of seven, Melissa spent an hour on the programme with an amazing bunch of volunteers. Together we practised all sorts of exercises to stimulate sensation in her face and uncurl her hands. We had paint-brushes and washing pads (the green-backed kind) that we used to stroke upwards on both sides of her face and round her mouth. Her hands were permanently curled due to developmental delay. One by one, we uncurled her fingers and again used brushes to rub backwards and forwards across her palms. A lot of time was spent on the floor. We rolled Melissa like a pencil, backwards and forwards, across a mat to trigger the workings of her brain. She was encouraged to mimic the volunteers crawling and rolling but she hated it and cried, which for a mum was equally distressing.
We then sang songs, which she loved. It transpired she could cope better with the exercises if we sang and so we rolled to ‘Row, Row, Row the Boat’. We swung her from side to side to ‘Side to Side, Rocking and Swaying’ and did the wobble-board to ‘This Is the Way the Lady Rides’. What a fantastic group they were! The majority turned out to be friends of my parents-in-law who had responded to a poster campaign asking for volunteers (they still see Meliss
a when she visits their church with her granny and granddad).
Andrew and I then did the same programme most evenings; we also got started on the physiotherapy exercises. It was hard work but we were rewarded by seeing Melissa slowly improve in confidence and being cheeky and non co-operative – at last she could voice her own opinions.
Already we had had one break-through with Melissa, which had given us hope when we went camping on the Costa Brava the summer before attending Brainwave. We flew to Barcelona, picked up a rental car and gazed out at turquoise waters as we drove in search of a hidden spot. It felt wonderful to be in Spain and we found just what we were looking for in Rosas. We had pre-booked a static tent with raised beds so that I could get in and out easily, as could Melissa. It was a small campsite. Our tent was underneath a tree, which was the only bit of green for miles around. Everything was hot and sandy.
For me the best thing about camping is the sense of freedom and cooking outdoors. You could smell the wild rosemary. Every evening as the sun went down, Andrew would open a bottle of wine and we would watch the older kids chase lizards while Melissa looked on happily. Some evenings, they went to the entertainment run by the campsite. Our tent was only five minutes away from a whirlwind of discos, talent shows and fancy-dress competitions. Peter and Clara both won first prize with the costumes I made them from bits and pieces found in the tent: Peter was James Bond, while Clara was a hula-hula girl.
It was that kind of balmy evening when our miracle happened. The German couple opposite us had a dog; the man was a paediatrician and they had slightly older kids. Between us was a dusty track. Melissa spotted their dog, a Lassie-type Collie, and pulled herself up on a chair. With the aid of the chair, she took her first step and her gaze didn’t leave the dog.
‘Look!’ I nudged Andrew.
I saw the wife nudge her husband as Melissa took one, two, three … and finally six steps across the track before she collapsed onto the dog. There wasn’t a dry eye in the house. I was crying, the woman opposite was crying and Andrew was pretending not to cry! And then Peter and Clara came back and they were so excited.
The next day we took Melissa to the beach, where we quickly discovered the sand was too hot for her feet. We went to the beach shop where they sold sun umbrellas and ice creams, and bought her first pair of sandals: a red pair of Jellys. Up until then she’d worn all sorts of boots with inserts and splints. Melissa never liked shoes but she loved those Jellys. We have a wonderful photo of her taking her first steps in sand – which is tricky when you’ve only just mastered the art of standing upright. She was over two years old by then but so small she looked like a one-year-old.
Before you could say sangria, it was time to yank out the tent pegs, drop the guy ropes, pack up and go home. Shivering beneath grey skies, we disembarked at Edinburgh airport and I realised, wow, I’m about to turn 40! In the madness of life, it was a milestone I could easily have missed. So I’d made it to 40: I had to do something. So, what did I do?
I climbed Ben Ptarmigan, of course. By now I felt a change in my body: physically, things were harder. No one used the term ‘secondary progressive’ until a couple of years after I’d turned 40 but as ever, I knew. For me, climbing mountains has always meant exactly that: getting to the top. In my forty-first year I wanted to reach the top of Ben Ptarmigan and look out at the view, to feel the wind on my face and the air whistling past my ears. The only problem was my legs. Would they get me there? It was doubtful. My most recent relapse, eight months prior to this, had triggered a severe deterioration, ending the ability to walk unaided. I knew this could be my last chance, my last challenge, before the winds of change pushed me towards Zimmer frames and wheelchairs.
‘Don’t worry,’ said Andrew. ‘I’ll get you up there.’
Preparing for the walk was like getting ready for a battle campaign. My parents-in-law had the three children for the day. Andrew deliberately picked Ben Ptarmigan so that we could park at the bottom and there wasn’t a long walk in. My brother-in-law Richard (who is four years younger than Andrew) accompanied us and so with sturdy arms on either side of me, I set off on a windy, sun-dappled day.
Ben Ptarmigan is the sort of Munro where you think you can see the top from the very beginning but as you get closer comes the realisation that it’s a false summit: you have to go down before you can go up. My right foot kept catching on the heather. As I progressed, I relied more and more on Andrew and Richard, as well as my trusty ‘Leki’ (a special walking stick for hill walkers).
After we reached the top, smelt the wild heather and gulped from the water bottle, I called home to say: ‘I’m at the top!’
Turning to Andrew, I said: ‘Couldn’t you have found me an easier one?’
‘You wouldn’t have wanted an easier one!’ he laughed. Later it transpired there was a track on the other side that would have taken me part of the way but Andrew knew I wouldn’t go for that. And he was right. I remember feeling utterly exhausted from the climb down: my adrenalin levels had faded and it was just a hard slog. Also, I felt sad – a feeling I kept to myself as I didn’t want to seem ungrateful but I knew this would be the last Munro that I would reach the top of. On the way back to Edinburgh, we stopped for pints of real ale to celebrate what a triumph it had been.
My worst fears were confirmed by the consultant neurologist at The Western General Hospital who sent me for an MRI scan in June 2003 – ‘You really wouldn’t want to be stuck in there with a wasp!’ joked Andrew. My consultant told me that I was now suffering secondary progressive MS. This is characterised by a more steady progression of symptoms and fewer relapses, just downhill all the way, and it tends to occur in MS sufferers over the age of 40 (I describe it as my war wounds playing up). As the brain is no longer able to continue to compensate for the faulty bits caused by damage to the nervous system, the damage already done worsens. I remember feeling angry and determined this wouldn’t happen to me as if I had any choice in the matter.
Melissa’s world (and mine too) had become medicalised to the point where I didn’t know who was doing what. If it wasn’t so ridiculous, it might have been funny. From 2002 onwards, trying to read my diary was a nightmare – I’d have to double-check everything. ‘Physio’: Is that me or Melissa? ‘Neurologist’: Melissa or me?
And then at the age of four, Melissa started at nursery, an educational nursery founded by the education department. The first educational psychologist we had in Edinburgh was a wonderful, no-nonsense lady called Patsy, who came to see us to discuss early years provision. She sent me to The Cottage in Edinburgh. The centre was set up to provide therapy for children from birth to the age of three and is run by Capability Scotland, the leading disability charity. We continued to go there twice a week for the next two years but what I really needed to find was a nursery. Patsy suggested Abbey Hill, a nursery with speech and language therapy, and it was perfect. All the children learn how to sign. As important as the emphasis on speech therapy is the physical layout of the nursery. Melissa was, and still is prone to claustrophobia but Abbey Hill has high ceilings and lots of outdoor space. At last, she began to thrive.
Peter and Clara reciprocated Melissa’s sense of achievement and her pride in being able to communicate for they became her speech therapy assistants. They taught her how to roll her tongue around sounds, to stress consonants and would wait for a response from her or make her indicate which mug she wanted to drink from. They were great. Words are secret doorways to the world and at last, they could communicate with their little sister and share the experience of life. For years she had been mute, doll-like even. Now she could answer back and demand biscuits and juice (a facility of which she made full use). She was part of the gang!
Melissa particularly loved the singing sessions. She would clap and laugh. It was another opportunity for her to relate to Peter and Clara, whose lives had become dominated by music in a way I’d never imagined possible although perhaps dreamed of. To see your children perform Handel’s Mes
siah or the Stabat Mater in a choir is a magical experience; it’s incredible. For our family, music had become a way of life.
My children’s talents had first been discovered and encouraged by their inspirational music teachers and new paths seemed to open daily. By the age of 11, Peter was learning the French horn and singing with the National Children’s Choir. He had a very energetic music teacher at school who took the boys under her wing and inspired them to great things: Sheena Graham encouraged his talents from the moment he arrived.
Clara, in the meantime, had picked up Peter’s French horn and begun to play. I was standing in the living room with Sheena, who had come to give Peter an extra lesson at home when we were interrupted by a halting rendition of ‘Mary Had a Little Lamb’.
‘That’s very unusual,’ said Sheena as we both turned, stunned, to see seven-year-old Clara blowing into the horn. ‘You should do something with that.’
And so I did. To give you a bit of history, I had a musical education in the sense of having learnt the piano and cello but I play both in a fumbling sort of way. I have strong memories of lying in bed, listening to Mum playing Beethoven’s Symphonies at floor-shaking volume as she studied for her degree in geography at St Andrew’s. We lived in Fife, which is close to Edinburgh. My parents always made a huge effort to take me to ballets, operas and orchestral performances. For my twelfth birthday, I was escorted to La Bohème and shed buckets when the heroine died of consumption.
But Andrew is the musical one. I should also mention here that Andrew, his brother Richard and both our fathers sing beautifully and have been members of choirs at various stages in their lives. As a boy, Andrew sang in the school choir and in our respective churches. For him, singing is something that he really enjoys and sadly, rarely has time for. It was not unusual for me to go out and return to find some huge choral piece blasting away on the stereo with Andrew, joined by Clara, singing the respective lines.
