A few days later a young doctor told me that Mum could come home, that they thought she’d had bad gastroenteritis. I refused to believe that, I pointed out her history or high blood pressure and suspected strokes, that her personality was changing, that she was becoming forgetful. The doctor relented, and thank goodness she did, because the CT scan of Mum’s brain that she ordered revealed at large Arachnoid Cyst that had probably been growing steadily larger for several years. And the depression, mobility, forgetfulness, dizziness, nausea and a whole host of other symptoms were probably related to it. They arranged for Mum to be transferred to the Royal Free Hospital at once, and very soon the Neurosurgeon explained they wanted to operate, to put in a shunt that would drain the cyst, and take the pressure off the brain. Mum was very scared, but she was told if the operation didn’t go ahead the cyst may prove fatal sooner rather than later. In the last night before the operation she told me she could see black beetles crawling up the walls of the ward, and that there had been a orgy going on in the cubicle next door!
The woman I saw sitting up in bed after the operation couldn’t have been more different from the person. She could move, smile, talk. And I could see just by looking into her eyes that I had my mum back. It was such a relief that I cried. We were incredibly lucky, we pushed for a diagnosis that could have been easily overlooked and it turned out that the problems that mum was having were caused by something that could be treated, and it gave her back a quality of life we had feared was gone for good.
It’s both frightening and fascinating how illness and diseases of the brain can impact so heavily of what we think of as almost separate from our bodies, our personalities, our memories, the people that we are. I saw a woman I knew better than anyone, and you knew me better than anyone, change completely and I feared that she was gradually slipping into a darkness that I couldn’t retrieve her from, but worse than that, was facing the possibility that we might never see the woman we loved so much again, before she left us.
It was that experience, and the awful emotional upheaval and turmoil that affected all of us at that time, that I was thinking about when I became to research The Memory Book. What if someone you loved was disintegrating in front of your very eyes, if you didn’t know them, and they didn’t know you anymore? If that happens, then what becomes of everything important that you shared together, love, memories, the moments that define a person, and experience of life? What would it be like, not just for those who were being left behind, but for the afflicted person themselves, what would they feel like? How would they cope with something they couldn’t control. And that was where the character of Claire came from.
I went on to do a great deal of research on Alzheimer’s, but crucially it was the first person accounts of Alzheimer’s sufferers that really brought out Claire’s voice. I think from one side of the veil of the disease it is easy to assume that all that is left behind the AD sufferers eyes is fog, that there is very little going on. In reality the disease often takes a long time to develop, with peaks and troughs and stops and starts, and for a very long time the sufferer knows exactly what they are losing, and they have to deal with the grief and acceptance of that realisation, even as the awareness slips thought their fingers.
I wanted to make The Memory Book about the most important moments in a person’s life, about the memories that define their lives, and the lives of those around them. I wanted it to be a book about love, not only romantic love, but maternal love, about caring for someone no matter what obstacles stand in the way. And also it’s a book about legacy, about being the best mother, wife, daughter that you can be, and knowing that if you do that, what will remain of you is love.