There seems something more speakingly incomprehensible in the powers, the failures, the inequalities of memory, than in any other of our intelligences.
Jane Austen, Mansfield Park
IN MARCH 2016 I arranged a final meeting with Carol and Stuart Jennings. They’d taken the familiar trip from Coventry to London for another round of experimental treatment, and kindly set aside some time for me. More than a year had passed since I’d seen Carol. I wasn’t quite sure what to expect.
‘There’s been a slight decline,’ Stuart said while the three of us sat in a restaurant near Russell Square. ‘Otherwise things have been okay, haven’t they, Carol?’
‘Hmm yes… oh yes,’ she replied with characteristic buoyancy. But Carol had undoubtedly slipped. She was quieter, less engaged, more withdrawn. She depended more on Stuart to steady her thoughts. When it was time to order, Stuart led the way while Carol softly echoed fragments of what he said, her mind seemingly taking refuge in his.
I kept remembering something Stuart had said to me when I was at their house. He’d told me that when they were young, as a new couple discovering each other, he rode a clapped-out old motorcycle. I pictured a young Carol sitting on the back, gripping on to Stuart, ready to start their life together. Even now, she was holding on to him, I realised, unaware of her destination but knowing the journey was important. When so much of a person’s memory is stripped away, watching their loved ones hold on to and love what’s left is a lesson in true intimacy.
‘It’s her language and conversation that’s deteriorated the most.’ Stuart lowered his voice several octaves, still uncomfortable speaking of Carol in the third person. ‘There are moments of lucidity, where you suddenly realise the person’s still there, somewhere… But the reality is that when you’re with someone for so long, you don’t need to communicate. It’s been forty years since we met. We know each other so well. There are things which are said but unsaid.’
Said but unsaid. That is the language of Alzheimer’s.
‘Carol increasingly lives in the present moment,’ Stuart continued. ‘I myself now live in the present moment. Because living in the moment is the best strategy for a carer. If you keep worrying about tomorrow, you’ll wear yourself out.’
Since I’d last spoken to the couple, they’d kept up the fight–attending conferences and staying involved with the London research team (who they now call ‘family’)–adamantly refusing, as Stuart maintains, to ‘go gently into that good night’. As Stuart still works as a university chaplain, he’s ensured that somebody now goes to the house every day to check on Carol and her ninety-year-old mother, Joyce. He was telling me about how much more protective he is over Carol, how increasingly aware he is of the limited time she has left, how his life is now about ‘squeezing every last drop of her’ that he can.
The trial Carol’s participating in is a form of immunotherapy, similar to the antibody drugs discussed in chapter six. It might not work. At her stage, it’s unlikely to. And she may only be getting a placebo (for the sake of scientific certitude, that information is also hidden from the scientists themselves). But the results no longer matter to the Jennings. ‘We’re not doing this for ourselves any more,’ said Stuart. ‘When she was diagnosed, Carol gave me very specific instructions. She’d said, “I want to be involved in research for as long as I possibly can.” So now, our struggle is the struggle to take the illness down with us.’
We left the restaurant and walked through the park. Carol was scheduled for another brain scan and I agreed to accompany them as far as the hospital. The day was warm and clear. Elderly men and women reclined on wooden benches while young couples picnicked on the grass. There was a subtle confidence in Carol’s stride. Head raised, hands clasped behind her back, she was moving into the final stages with unusual calm. Perhaps the treatment was doing something, I mused. Then she looked at me and released a wide smile.
Perhaps indeed.
On a summer day in 2016, sitting alone in his house, Arnold Levi was stirred by the sound of Danie and me, once more waiting patiently at his doorstep. My meeting with Arnold was not to witness his decline–I already knew he wasn’t doing well–but to try to catch his final moments of memory and insight, his last tendrils of spirit and inner being.
When I sat beside him and asked how he’d been, he returned a glassy, empty stare. He’d been busy at the film studio, he told me plainly. They needed help with a new production and he was the first person they called. Danie looked at me and gently shook his head. Arnold’s mind was now reliving his years as a young man, creating its own reality from residual memories, selecting and magnifying that which brought him the most peace in his life. He looked unnaturally formal, almost paralysed in a state of suspended animation, like a living statue.
While Danie began his usual routine of opening Arnold’s mail, I accompanied Arnold to the kitchen to help him make a cup of tea. He watched with a calm, blank look as I reached for a cup and teaspoon. ‘Yes… yes…’ he quietly assured me, ‘that’s what we need… isn’t it?’
‘It says here the doctors want to see you again,’ Danie told Arnold as we walked back to the living room.
‘Oh,’ Arnold responded. ‘I wonder what they want to see me about…’
‘I know you’ve been taking your medication.’
‘Have I? Thank goodness you told me… I wouldn’t know what I was supposed to be doing… You know, I haven’t seen you in a long time.’
Danie looked at him. ‘I saw you two days ago, Arnold.’
‘Oh… well, did I… did I know it?’
I sensed fear in Arnold as he said this. He had the look of a man embroiled in a hopeless inner struggle, his brain searching for connections that no longer existed.
‘But why would I have forgotten that?’ he implored. ‘Is there any idea about that?’
Danie interjected, ‘Why don’t you show Joseph your photo albums? I’m sure he’d love to see them.’ On this bright note, arm-in-arm, Arnold and I headed up to the attic.
‘You can put your tea down on that desk,’ Arnold instructed, before planting himself on a chair in the corner beneath a small window that blanketed the floor in light. I pulled a large, leather-bound volume off a nearby shelf. The spine crackled as I opened it on Arnold’s lap, and he bristled at the sight. The first few pages held pictures of two children clasped in a pretty brunette’s arms. ‘That’s me and my mother and sister,’ he whispered with mild confidence. I turned the page to see photographs of a thirty-something, tanned, handsome Arnold in shorts on the beach. He was standing next to Danie’s parents–Danie himself, a small boy, nestled among them, grinning at the camera. Hoping to spark a flash of memory, I asked Arnold if he could name the people in the picture. He stared at them for a few seconds and then turned to me. ‘I can’t give you an answer to this…’ Then he looked over my shoulder. ‘Who’s left that tea there?’
It was like watching someone endlessly fall back through time.
My father had attempted this routine with Abbas. In what would become his final trip to visit his ailing father in Iran, he took several old photographs with him–memories of his childhood that he’d kept over the years. As with Arnold, they didn’t appear to trigger any signs of reminiscence in Abbas. And yet, I cannot think about that without feeling that we are missing something significant in our apprehension of memory. From one angle, my father’s photographs can be seen as mere snapshots of time–moments and experiences–to show Abbas that his past was real, that his life had meaning. From another, they are each an abstraction of the thoughts and feelings that must have occurred in Abbas when he experienced such moments, each a portrait that once hung proudly in the gallery of his mind, each something no amount of brain imaging or cell culturing or gene sequencing will ever recapitulate. When I contemplate my father’s act, and every other person no doubt doing the same, I see an attempt to tap into some distant, transient but surviving connection. It is not a futile endeavour. We do it because we know, deep down, a connection is still there.
As a child, I had viewed Abbas’s illness as something to fear and something to accept. Alzheimer’s was an invisible and terrifying cross to bear, a profound loss that my generation would not see an end to. Now, I understood just how innocent that thinking was. In writing this book I had discovered an astonishingly intricate yet eminently malleable disease. I had witnessed extraordinary minds catapulting neuroscience into unimaginable futures. And I had seen breathtaking acts of human courage and unalloyed sacrifice. We are closer than ever to the abolition of Alzheimer’s.
It truly is the beginning of the end.