Authors: Robert McCrum
Under Dos, I listed the following:
1. Try alternative therapies like acupuncture.
2. Find out as much as you can about your illness.
3. Take the initiative.
4. Accept help from friends and relatives.
5. Trust your body.
6. Give yourself time.
7. Meet and talk with other stroke-sufferers.
My personal Don’ts were simpler and more fundamental:
1. Don’t despair.
2. Don’t imagine you are forgotten.
3. Don’t surrender.
In hindsight, I believe that I’ve been ‘away’ to a prison, or a war, and come back, sadder and perhaps a little bit wiser. I’ll probably not see the meaning of this event in my life for some years, but one thing is certain: even if, nearly two years after my stroke, the experience is beginning to seem just that, part of experience, still it has meant a lot, even as it is slowly becoming absorbed into the pattern of my personality.
Now, when I meet people for the first time, I no longer feel, as I did at first, that my stroke stands between me and the outside world like a pane of frosted glass. I can be myself again. When strangers ask me how I hurt my leg I can now say, without awkwardness, ‘Oh, I had a stroke a couple of years ago,’ and move on to other topics. ‘What,’ asks the
Mahabharata
, ‘is the greatest miracle of all?’ and then provides the inspiring answer: ‘Each day death strikes, yet man lives as though he were immortal.’
I no longer think I am immortal (as I did in my twenties) but life has returned to normal, more or less. True, I have to plan my movements more carefully than before and I cannot spontaneously do things I’d like to do as of old: I cannot spontaneously go for a long walk, or run through the park on a bright Saturday morning, but as Sarah likes to chide when I wail about this, ‘When did you ever do those things, anyway?’ She christened this the ‘Waterstone’s sensation’, after the bookstore on
Islington Green, at the top of St Peter’s Street, a distance of perhaps four hundred yards from my house.
Before my stroke, I had always loved to browse at leisure in our two small neighbourhood bookshops, Angel Books and the Village Bookshop. It so happened that when I was in hospital the bookselling chain Water-stone’s opened a huge new store in a deserted building on the bad, neglected side of Islington Green, a two-minute walk from my house. In my ‘old’ life, I would have stopped in at the first opportunity and enjoyed browsing the shelves, buying paperbacks I’d never read and perhaps getting to know the staff. Now, frustrated that this simple detour on my way home had become an exhausting half-hour excursion fraught with difficulty and exhaustion, I regretted my lost freedom to do as I pleased. Yet, as Sarah likes to point out, in my ‘old’ life, I would have sandwiched such a visit into the texture of an already overcrowded day, probably found fault with the selection and availability of the books and come home denouncing the way the book chains threatened the livelihoods of the independent bookshops. None the less, this ‘Waterstone’s sensation’ occurs often enough each day to be worth noting. It offers an insight into the restrictions of old age, the dependency that comes with the loss of mobility.
Besides, for all the things I’ve lost, there’s so much that’s been gained. My stroke came as a punctuation mark in the course of a busy life. At the time, I thought it was a full stop, but it turned out to be a comma, or at worst an exclamation point. For a long time, I felt cursed. But then I would recognize that I had this consolation.
I suffered this blow, or calamity, less than two months after getting married. I had been absolutely sure of my
love for Sarah in a way I had never been absolutely sure before, and yet who knows what the crisis might have done to our relationship as newlyweds? We knew and loved each other well, but no better than two people who had criss-crossed the Atlantic for a year in a highly charged romantic daze, and had spent barely one calendar month in each other’s company. When Sarah was summoned back from San Francisco, she did not know what she might find at the other end of a long plane ride. Her new husband might be a vegetable. He might be dead. As it happened, I was conscious and alive and she, for her part, rose to the occasion with grace, humour and courage. Now, when I wake and find her breathing quietly next to me, every day seems like a blessing.
None the less, until I had reached 29 July 1996, I did not feel released from the malign aura of my stroke. After that anniversary I began to feel better. Besides there was someone other than myself to think about. By the end of July 1996, Sarah knew that she was expecting a baby.
She broke this news to me casually one evening as we were watching a video. Sarah, I remember, was eating a piece of fruit (one of Sarah’s most endearing habits is the way she squirrels away food for hungry moments. You can be absorbed in a film at the movie house and suddenly find, from the rustling at your side, that Sarah is about to take a bite from a piece of cake or fruit she happened - just happened - to have in her pocket), and when I observed that this would be good for her, she replied, ‘Good for both of us, I’d hope.’
The news of the baby in our lives came, I believe, not a minute too soon, before I turned into a monster of dependency. Now, suddenly, all the focus was on Sarah.
Her welfare was top of the agenda, and it was now her well-being that mattered. In the next several months we went for the usual battery of tests and were relieved to be told that the baby (we had opted not to know its gender) was doing very well.
After the frustrations of stroke recovery, it was wonderfully reassuring to visit a clinic and to receive specific answers to simple questions, in other words to receive a diagnosis on which one could rely.
We would lie in bed and think about the future. We would lie in bed, read the papers, try to enjoy our freedom and imagine what life was going to be like when ‘TK’ (named after the journalistic abbreviation for copy ‘to come’) actually arrived.
Meanwhile, as we waited, we read in the newspapers that women’s brains actually shrink during pregnancy. This, Sarah reported (for the Internet magazine,
Slate
), was why, as a pregnant woman, she felt ‘so spaced out and inept’. So why haven’t we mailed our Christmas cards yet? Because my brain is too small!
As the moment of TK’s arrival drew nearer, traditionally a time of joyous anticipation, Sarah became more and more conventionally baby-centred. She told me one weekend in January that all she wanted to do was yell at me because the house was such a mess. This ‘nesting instinct’ - the time that you put charming little touches to your delightful home, floral borders in the baby’s room, ruffled scraps of fabric glued to the window-frames - seemed so far from Sarah’s nature that it was almost comical to behold. When, I teased, would she start needlepointing animal cushions or stencilling scenes of sweet wee fairies dwelling under toadstools? She replied that at least I should consider picking the mail off the floor. ‘I think,’ she observed on one
occasion, ‘that you’re an even bigger slob than me, and you leave trails of paper behind you wherever you go, like a snail.’ Well, quite so.
When Sarah went to the doctor, some two weeks before her due date, she was told that there was no sign of imminent labour. ‘Perhaps,’ she wrote in
Slate
, ‘perhaps I’ll be pregnant for the next fifty years, getting bigger and bigger and evolving from my current status (youngish, smallish water buffalo) through the really mammoth parts of the animal kingdom (aged enormous whale).’
These last weeks were so strange for both of us as we stood on the edge of this precipice, not knowing when exactly she would finally go over the edge into parenthood. It was like waiting for a guest who would be staying with you for the rest of your life, said Sarah, and - the joke is -
YOU DON’T KNOW ANYTHING ABOUT HIM
(or her).
And still, after what had seemed like years of outpatient visiting, we were attending hospital classes. My recovery from my stroke can be measured by the level of my disaffection on these occasions. In one survey of fathers’ attitudes towards labour, most of the men questioned said they were thrilled to be present, looked forward to delivering one single-handedly at home, wished they could have a baby themselves, etc., etc. But 3 per cent replied that they got sick. My mood at these childbirth classes was somewhere between wanting to have the baby myself and feeling sick.
Sarah says that my attitude to these antenatal sessions was that of a political prisoner undergoing the torture of watching videos of other prisoners having electrodes attached to their private parts. My customary response was to lie on one of the beanbags provided for the mums
(we were all supposed to sit on the floor) and fall asleep. Sarah likes to say that I would wake up when the po-faced instructor’s flip-chart presentation moved from ‘pain relief during labour’ to ‘parking near the hospital’.
The final session was especially gruelling. We were shown videos of several women actually going through childbirth. Stephanie, the first case, had decided only to take nitrous oxide and apparently spent half a day moaning and whimpering or laughing pointlessly as if she was insane. As the other cases unfolded, and we watched scenes of heaving and panting, unbearable pain and carnage, it occurred to me that, whatever else I’d gone through, it had been essentially pain-free.
Sarah was surprisingly tolerant of my response to the trauma of the antenatal class. She contrasted my behaviour with that of another man she’d heard about. This father-to-be arrived at his childbirth class and proceeded to sit stiffly in the only chair in the room, looking increasingly unhappy. The instructor noticed this and felt she should confront his repressed, but obviously intense emotions.
‘What are you thinking?’ she asked him gently.
‘I was just thinking,’ he replied, ‘that I’d like to go skiing.’
At home, now, it was Sarah who was having the sleepless nights, caught in the antenatal limbo, that two-week border between the past and the future, lying in bed, as she put it, ‘like a giant walrus marooned on the rocks’. When she confided her thoughts to her
Slate
diary at this time, it was an apt summary of our time together:
We’ve had a strange three years. I moved away from New York and into Robert’s house in London just a year
after we met. We got married six months later, and then he fell spectacularly ill, and while he’s better now, I’m not sure I am - though I can usually push it down pretty far, I suspect I’ll always feel unsettled and scared.
A few days after she’d written this, Sarah turned to me one Saturday morning, with a strange expression on her face. ‘Time to get going,’ she said. Now, for the first time in months, I was the one who was looking after her. It was a joyous moment. As I steered the car, with Sarah, the beloved whale, beside me, towards her maternity hospital, my view of the city streets was veiled with tears. No question about it: my year off was coming to a close.
The blossom is out in full now … it looks like apple blossom but it’s white, and looking at it, instead of saying, ‘Oh, that’s nice blossom’ … I see it as the whitest, frothiest, blossomest blossom that there ever could be … Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous.
Dennis Potter,
Seeing the Blossom
Our baby was born on Candlemas, Sunday 2 February 1997. We named her Alice.
Arthur Ancowitz MD:
The Stroke Book
(New York, 1993)
Marcus Aurelius:
Meditations
(London, 1995)
Paul Auster:
The Invention of Solitude
(London, 1982)
Jean-Dominique Bauby:
The Diving Bell and the Butterfly
(London, 1997)
Harold Brodkey:
This Wild Darkness, The Story of My Death
(London, 1997)
John Donne:
Devotions Upon Emergent Occasions
(Cambridge, 1923)
Steven L. Dubovsky:
Mind Body Deceptions
(New York, 1997)
Heart and Stroke Foundation of Canada:
The Canadian Family Guide to Stroke
(Toronto, 1996)
David Hughes:
The Little Book
(London, 1993)
Dharma Singh Khalsa:
Brain Longevity
(London, 1997)
Bonnie Sher Klein:
Slow Dance, A Story of Stroke, Love and Disability
(Toronto, 1997)
Joseph Le Doux:
The Emotional Brain
(London, 1998)
C. S. Lewis:
A Grief Observed
(London, 1961)
Peter Medawar:
Memoir of a Thinking Radish
(Oxford, 1986)
Sherwin B. Nuland:
How We Die
(New York, 1994)
Stephen Pinker:
How The Mind Works
(London, 1998)
Roy Porter:
The Greater Benefit to Mankind
(London, 1997)
Elizabeth Kubler Ross:
The Wheel of Life
(London, 1997)
—
On Death and Dying
(London, 1966)
Oliver Sacks:
The Man Who Mistook His Wife For A Hat
(London, 1985)
—
An Anthropologist On Mars
(London, 1995)
Susan Sontag:
Illness as Metaphor
(New York, 1977)
Weiner, Lee & Bell:
Recovering At Home After A Stroke
(New York, 1994)
I gratefully acknowledge the assistance of Donal O’Kelly and the Different Strokes organization in the compilation of this dossier.
Different Strokes, Sir Walter Scott House, 2 Broadway Market, London E8 4QJ. Tel: 0171 249 6645
The Disability Information Trust series of leaflets, Mary Marlborough Centre, Nuffield Orthopaedic Centre, Headington, Oxford OX3 7LD. Tel: 01865 227592.
REMAP GB, ‘Hazeldene’, Ightam, Sevenoaks, Kent TN15 9AD. Tel: 01732 883818