[Interview, Part 1 of 2] Jonathan Taylor, author of ‘Take Me Home: Parkinson’s, My Father, Myself’
Jonathan Taylor has written and published a memoir, Take Me Home: Parkinson’s, My Father, Myself (Granta, 2007).
In addition to Take Me Home, he has written two academic books, Science and Omniscience in Nineteenth-Century Literature (Sussex Academic Press, 2007) and Mastery and Slavery in Victorian Writing (Palgrave-Macmillan, 2003) and has co-edited the collection of essays, Figures of Heresy: Radical Theology in English and American Writing, 1800-2000 (Sussex Academic Press, 2005) with Dr. Andrew Dix.
Taylor is also co-founder and co-director of Crystal Clear Creators, an arts organisation and not-for-profit company, which records, publishes, produces and promotes new writing, particularly for radio.
Currently Taylor is a Senior Lecturer in Creative Writing at De Montfort University in Leicester where he specialises in prose writing, memoir-writing, radio writing and literature of the nineteenth-century.
In this, the first of two interviews, Jonathan Taylor speaks about how the process of writing Take Me Home helped him understand his experiences as an informal carer as well as his relationship with his father.
What motivated you to start working on the memoir?
I always felt there was a real imperative behind my writing it — when I was writing it, I just felt I had to do it.
I wanted to write something which could help me understand what had happened to my father and my relationship with him — something that (retrospectively) would help me understand the “story” of his illness.
There were so many hidden complexities in his life and illness that I wanted to unravel them, and I thought writing the book would help me do that. I also wanted to write the kind of book which I would have liked to have read when I was caring for him — the kind of book which would have helped me to understand my experience and conflicting emotions as a carer.
Did writing the book help you understand these emotions?
I think it helped by making sense of what had happened to us and what the illness meant.
If nothing else, I learnt that certain elements of his illness had names. Putting names to things sometimes helps, I suppose.
At the time it was happening, I just saw the symptoms and didn’t understand — or often thought he was being deliberately irritating. For example, he suffered from Capgras Syndrome, which means that the sufferer becomes convinced that a “significant other” isn’t him or herself, but is a someone impersonating him or her.
My father became convinced for a long while that I wasn’t me, but was being impersonated by an old colleague at work whom he hadn’t got on with. At the time, I just thought he was angry at me, and the disease had made him forget who I was. But retrospectively, I came across an academic research paper written about my relationship with my father, which said that he suffered from Capgras Syndrome. Being able to put a name to his inability to recognise me helped me to understand what had happened.
I suppose the difficulty is that it also made me feel bad for being so impatient with him; when I realise that so many of the things I got cross with him about (repeating things over and over, misrecognising me, repeating actions over and over) were real symptoms and recognised conditions, I can’t help feeling guilt about my impatience with him at the time.
So, that understanding is a two-edged sword in some ways.
All carers, I think, have to deal with guilt over how they behaved, what they did.
Impossible standards for carers are set in the media and on television, and they suffer terribly from guilt when they’re not always patient angels, but human beings who get cross, frustrated, impatient and so on. I wanted to show that that’s normal — that a carer can’t be 100% happy and patient all the time.
The guilt is an inevitable part of the process, but it helps (hopefully) to know that other carers feel the same, that other carers get cross too.
Another way in which writing the book was both a positive and a “negative” experience in one was that a lot of what I uncovered didn’t really add up. I realised that my father would remain a bit of an enigma, however hard I tried to find more out. For example, the father that I knew and the father that my half-brother knew as a boy seem to be two wholly different people, and it’s impossible to reconcile our views of him as children. I had to come to accept that my father was a hugely complicated and contradictory person; that was the “conclusion” to the book — that there was no conclusion, no simple way of understanding him.
How old were you when you started caring for your father?
I suppose it was round about when I was 17ish that I really started looking after him (in 1990).
What did your duties involve?
I used to take over from my mother (who was his full-time carer) for a few days at a time, when she went down to Torquay to visit her parents (who were themselves ill). The responsibilities and duties changed radically over time, but they obviously involved 24 hour care — everything from feeding him, organising the medication, moving him about the house, putting him to bed, picking him up when he fell, toiletting and so on and so forth. Every single part of the day was devoted to a particular job or routine.
How did this affect you?
I think it had a deep effect on me as a person, though it’s hard to know what without having something to measure it against.
On the one hand, I felt proud to look after him — I felt I was doing something important, something that needed to be done — and I loved him very much. On the other hand, it exposed to me all the worst parts of my nature at the same time. I suppose care often does that.
All I can say is that, since his death, I have missed caring for him terribly — because very few things feel as important or worthwhile, however well or badly I did it back then.
Do you feel you had adequate support?
The whole family supported each other — we all took up different roles “round” my father, caring for him in different ways (for example, my sister is a doctor, so she dealt with many of the medical matters, and, indeed, saved his life on one or more occasions).
Outside the family, we saw the best and the worst of the modern health system. There were some wonderful individuals who helped, but the institutions (such as hospitals) were often very poor. They don’t cater well for Parkinsonians, or people suffering from degenerative disorders. On a simple level, for instance, Parkinson’s sufferers often have complicated pill regimes — but the pill regimes often don’t fit into the hospital routines, and pills are forgotten or switched around for no good reason.
Hospitals, I think, deal well most of the time when things are at crisis point, but slow, degenerative disorders often meet with institutional neglect and a general malaise.
When did you decide you wanted to write about these experiences?
The very first inkling I had that I could write about my experience was way back, in 1998, when I discovered that I had a half-brother I’d never heard of. At the same time, I found out that my father had been married before.
As these revelations started, I remember my mother turning to me and saying, “Gosh, it’d make a good book, wouldn’t it?” That was when I first thought about it.
Then I first started working on the memoir seriously in 2001, when my father died. In that sense, the memoir is a memorial to him.
How did you find out about your half-brother?
One Christmas (1998), my mother sat me down at the kitchen table and placed a series of letters in front of me. One of them was from the Salvation Army tracing service. Colin (my half-brother) had decided to trace my father after 30 years of not seeing him.
Did your mother know about his previous marriage?
Yes — in fact, I’ve gradually realised that most people knew apart from us (his children from his second marriage)!
How did these revelations make you feel?
I wasn’t totally surprised, I suppose, in that we had always wondered where he’d been before he met my mother. There were years of his life he didn’t talk about, so (as an imaginative kid) I used to make up all sorts of fantasy stories about that time. It’s also possible that, because of the trauma of his first marriage and, indeed, because of the Electro-Convulsive Therapy (ECT) he may or may not have had after his first nervous breakdown, that it really was all blotted out.
I’ve got to know my half-brother well now, and that’s been a real delight — he is the spitting image of my father, looks-wise. So it’s been a strange, but positive experience. I also understand why my father didn’t talk about these things, why these things were hidden. After all, we were young children and wouldn’t have understood — and then, by the time we would in the 1990s, he was very ill, and probably couldn’t talk about them very easily.