Laughter greets me as I reach Shirley Parsons’ door; great waves of it that subside into giggles and snorts of amusement.
I hadn’t expected it. In fact I had anticipated quietness, sobriety — the sort of earnest solemnity that might attend a sick bed.
But Shirley, it turns out, is full of paradoxes and surprises.
Fifteen years ago, when she was 42 — an active married woman working as a solicitor in a busy legal practice in Devon — she was paralysed from the neck downwards following a haemorrhagic stroke. The blood clot that travelled to her brain also robbed her of the capacity to speak.
Shirley Parsons was a 42-year-old married solicitor when 15 years ago she had a haemorrhagic stroke which robbed her of her ability to speak
Shirley was expected to die, but she conspicuously failed to do so. Now, however, she has ‘locked-in’ syndrome. Her alert and able brain is marooned in an immobile body; her mouth cannot articulate her thoughts.
I imagined her condition would also have deprived her of humour and (as she cannot speak) the capacity to express it outwardly. Surely to be rendered mute and motionless must be the worst kind of imprisonment?
But by some quirk of nature, and against all logic and reason, Shirley can still physically laugh. And she does so often and infectiously, bringing joy to all those around her.
‘Shirley is definitely the happiest person I know,’ says one of her round-the-clock carers, Valerie Griffiths. ‘There are lots of lively and hilarious episodes with her. We laugh all the time. This isn’t a sombre job. Actually, it’s uplifting.’
Shirley, pictured with her father Henry Dennis on her wedding day aged 20 in 1980
More than that, Shirley, 57, tells me — writing slowly on a computer operated by a sensor she works with her right cheek — that she is happy; in some ways actually happier than she was in her former, able-bodied life.
It is a startling admission and I ask her to explain. The answer takes shape slowly as she types.
‘My former life was busy, noisy, pressurised and stressful, and now it’s quiet, peaceful and calm, with more time to fully appreciate life,’ she writes. ‘I’ve never really considered it before but I probably do feel liberated from the trappings of a normal working life.
‘I certainly appreciate other people more and have time to fully enjoy the important things like being with friends and family. I think I feel a different kind of happiness now, born out of contentment.’
It is an extraordinary response. Few of us who have the liberty to move and talk can think about being deprived of these faculties without utter horror. But Shirley has astounded, delighted and humbled me in the few weeks I have known her. She is, quite frankly, an extraordinary individual.
We spent several weeks swapping emails — she returning eloquent, thoughtful and often witty responses to my questions — before I visit her.
I ask Shirley if she has ever, in her darkest days, succumbed to despair; ever considered taking her own life.
Her answer is emphatic. ‘Not even for a split second,’ she tells me. ‘My view is that a limited life is better than no life at all. However, I respect the views of those who differ. Everyone is entitled to their own opinion.
‘There were many dark moments during the first year,’ she concedes. ‘I cried a lot. But as my level of acceptance increased, so did my level of happiness.’
She lives in a village on the edge of Dartmoor, Devon, in a specially-adapted bungalow next to a residential care home. Light streams through the French doors. There is a view of fields, and her cats, Smudge and Tigger, stretch languidly in the sun.
Shirley, pictured left on her wedding day in 1980 and right, aged 36, graduating from the University of the West of England in Bristol was not expected to survive her stroke
Shirley remains married to her husband, whom she won’t name (‘he’d kill me!’) but who lives nearby and visits often. He still runs the family farm on which she grew up.
They didn’t have any children, which, she says, is not a regret because she did not want any in the first place.
A good and loyal wife still, she respects his privacy. Questions as to how he copes with their situation, the nature of their relationship, whether he has found someone else, and whether she would be accepting if he did, are batted away with good humour but certitude. The no-nonsense, ruddy country girl has not gone away.
‘I still love my husband,’ she says. ‘He makes me laugh. I miss him not being with me but I accept he couldn’t care for me. It would be a very demanding job. But it’s important that I’m still married.’ And that is the end of the conversation.
Her constant companions are her carers. Valerie, 58 — cheerful and calm with a lilting Welsh accent — has been one of two regular carers for five-and-a-half years and works for two weeks, staying overnight in the bungalow’s bright spare bedroom, then has two weeks off when another carer comes.
Extra carers from the adjacent home come in three times daily to help dress, wash and feed Shirley.
She is still fiercely independent in many ways, however. She shops for clothes and groceries on the internet and manages her own care.
Shirley, aged 13 in school
‘She types notes to us each day about food portions, heating, what she’d like to wear; the positioning of the bed — things like that,’ explains Valerie.
‘Are you allowed to say if you don’t like a carer?’ I ask Shirley. She laughs. ‘I’ve done so loads of times,’ she says. ‘I’ve sent carers away! I look for humour, patience; no fuss.’
It is a measure of her tenacity and determination that since she became locked in she has taken two Open University degrees — a Bachelor’s and a Master’s in social sciences with politics.
The graduation certificates are framed and proudly displayed on the wall.
For four hours a day, Shirley studied with the help of computer software that read books aloud to her. Exams were a test of endurance: Shirley was permitted four hours for every one hour of a usual exam.
This meant standard three-hour exams — completed at her home in the presence of an invigilator — took 12 hours and were spaced over three days.
I ask if the feeling of triumph when she graduated was magnified because of the effort involved. ‘Definitely!’ She smiles.
She is an only child and her mum, who died three years ago, never properly recovered from the shock of seeing her daughter so severely disabled. ‘It was very hard for her,’ says Shirley, with understatement.
Her dad Henry, who turned 90 in April, visits twice weekly and takes her on outings, usually to a park in Okehampton, and sometimes out to lunch. She enjoys the occasional vodka and orange. Eating and tasting food — which she is fed in pureed form — is also a positive pleasure that might have been denied to her had she not been so determined to learn to swallow.
‘After my stroke I was fed through a peg-tube direct into my stomach,’ she remembers.
‘I wasn’t even able to swallow saliva and I was told that I’d never be able to swallow. But with practice, initially through illicit consumption of chocolate buttons at the rehab centre where I went after hospital, I reached my goal of being able to eat.’
Who fed you the forbidden chocolate buttons? I ask, amused. ‘My husband!’ she says. ‘I suppose you could have choked?’ I remark.
She raises her eyes upwards, her signal for yes, and types: ‘But he didn’t dare say no!’
Despite her condition, she has successfully completed two Open University degrees – a Bachelor’s and a Master’s in social sciences with politics
Grit and tenacity have always been strong components of Shirley’s personality — she would joke that she is actually ‘stubborn and awkward’ — and neither of these qualities has diminished since her stroke.
She says she often thinks about her old life — not with wistful regret, but with pleasure that she has good memories to draw upon — and about the job she loved, her marriage and the farm.
Her leisure time used to be full of activity. She loved aerobics, socialising with friends and, having grown up on her parents’ farm, the countryside and walking were in her blood.
History remains a passion. Holidays in her old life were spent travelling to places ‘that had a bit of history about them’. Today, she admits the logistics are tricky — every outing assumes the complexity of a military manoeuvre — so she doesn’t venture far from home for more than a few days.
In her old life she qualified as a solicitor through sheer hard graft. Having joined a law firm in Okehampton as an office junior straight from school at 17, she became a secretary, then, after a few years, studied to become a legal executive by correspondence course, while doing her day job.
Finally she qualified in law in 1997 — her area of expertise was residential conveyancing — studying at weekends and passing her exams while still running a busy legal practice.
Shirley learned how to swallow again after being smuggled chocolate buttons by her husband while in a rehab centre
Everything came to an abrupt halt one awful Sunday morning in December 2002. Shirley recalls: ‘I woke up with a splitting headache and, when I tried to get out of bed, I found that I had severe vertigo so went back to bed and stayed there much of the day.
‘I felt a bit better late afternoon, and as I thought that some fresh air would do me good, I got up and went down to the farm for a walk.
‘While I was there, I thought I would make myself useful and feed a few of the animals. But, while I was doing it, I felt a bit dizzy so sat down on a pile of hay.
‘It was obviously then that I had my stroke, because the next thing I knew I was coming around in intensive care a couple of weeks later.’
Much of what happened during her four weeks in hospital is obliterated from her memory. However, during the ensuing 16 months in a neurological rehab centre, the implications of the stroke hit her. ‘I didn’t handle it well. I cried a lot,’ she says of those early days.
I wonder if the terror of being unable to communicate was her worst fear, but she explains that even in the early weeks she learned to raise her eyes to signal ‘yes’ and look down to indicate ‘no’.
Communication with Shirley is necessarily a laborious process. If she is not at her computer, she spells out words with the help of an alphabet board, building them up painstakingly by blinking when her listener indicates the correct letter on the board.
Inside, of course, her active brain is buzzing; her sentences ready-formed into eloquent expressions of thought.
I cannot imagine, I say, how frustrating it must be when strangers assume she does not understand them, because of her disability, and talk to her carer instead.
‘At first it annoyed me,’ she admits. ‘But I’ve come to accept it as inevitable. Most people have never even heard of locked-in syndrome, let alone know what it is, so don’t know what to expect and can only go on appearance.
‘I occasionally get frustrated when people don’t understand what I’m trying to say, but generally I’ve accepted my condition. It happened, I can’t turn the clock back, so I’ve just got to make the best of it.’
Acceptance. It seems to be the key to Shirley’s happiness. That, and her obdurate refusal to ever capitulate.
When she came out of rehab, it was obvious she would need professional care. Medics favoured a nursing home, but Shirley, then just 42, did not agree. ‘I’m not at all suited to institutional living,’ she says. ‘I’m far too independent. So they had to think again.’
Their solution was judicious and creative. Her little bungalow, in a small assisted living complex next to the care home, gives her both a degree of autonomy and the comfort of knowing that, aside from her regular carer, there is constant support at hand. ‘Thankfully,’ she adds, ‘apart from the occasional bit of cramp or backache that everyone gets, I’m not in pain.’
Because Shirley has such a rare capacity for joy, a visit to her home leaves you filled with an unexpected optimism that even the bleakest of personal tragedies can be turned into triumph.
Shirley said her life changed in December 2002 when she had a splitting headache and was unable to get out of bed because of vertigo
‘I find joy in almost anything, no matter how small,’ she says. ‘And recently I’ve experienced the joy of watching my beloved Manchester City, who I’ve supported for 50 years, have such a record-breaking season.
‘I’m very much a lady of leisure these days and, unless I’m going out, I spend much of the daytime at the computer, keeping in touch with friends and family by email or via Facebook, surfing the internet or watching TV.
‘I like watching most sports, as well as historical documentaries and comedy. I laugh at just about anything and I generally laugh loudly. In fact, I only have to think of something funny and I start giggling.
‘I’ve come to the conclusion,’ she adds, ‘that my brain’s default setting is happiness’ — and as I wave goodbye to her and turn to walk down the drive, once again I hear the glorious ripple of her laughter.