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I love painting. I don't know what I'll do when my eyesight finally goes
Alison Roberts18 Mar 2008
Sophie Montgomery gets invited to a lot of parties. A successful artist, who also deals in contemporary painting, wife of newspaper owner David Montgomery, and the daughter of Lord and Lady Birdwood, she moves in some of London's most glamorous social circles. Yet people who don't know her well might be forgiven for thinking her an exceptionally clumsy guest.
"I've been known to fall down stairs at parties," she says. "I knock over trays of drinks, that sort of thing. Often I do need to take someone's arm when I move around. I can also seem very rude. I must have failed to acknowledge someone waving at me, from across the street or at a party, dozens of times."
Of course, none of this behaviour is deliberate. All her life, Sophie has known that she stands a 50-50 chance of inheriting a devastating condition called retinitis pigmentosa (RP) which causes a gradual loss of eyesight and, eventually, complete blindness. Nine years ago, realising with "knotted stomach" that she couldn't see people "unless they were sort
of directly in front of me", she took a test that confirmed her grim suspicion - the process of deterioration had begun.
Sophie has decided to talk about her condition publicly for the first time in support of the British Retinitis Pigmentosa Society, a fundraising body on whose board of trustees both she and her father sit. As she's been telling friends for a while now, her sight is worsening. Today she has lost much of her peripheral vision - hence the knocking over of trays - and, in dimly lit rooms, finds it hard to make out anything much at all.
"Losing peripheral vision is how it starts. But I'm finding it particularly pronounced, and difficult, in low light," she says. "Going out at night can be quite hazardous for me. I'm starting to move very tentatively and I can feel quite disorientated. If someone comes up to say hello to me, and we're in a low-lit room, and perhaps there's a light shining right behind them, I can't see their face at all.
"A couple of times, I've been out somewhere and just felt unable to cope. At night, for example, I can't possibly cross the road on my own."
Her tone is dry and stoical, occasionally even amused, as she describes her current level of disability and the social awkwardness it causes, but she clearly fears for the future and admits to battling depression.
"It is a sword of Damocles, this totally unpredictable thing hanging over you. I just don't know how much time I've got until I go completely blind. No one knows. What happens with RP is that it picks up speed. The deterioration isn't consistent. It's like a snowball - so I do have 'poor me' days, when I find myself moping around the house about it, thinking f*** it, this is just so boring. You start to lose your independence, and that's depressing in itself - driving was the first thing to go. I have bouts of worry."
There is no means of arresting RP's progress. But, although, week by week, she notices her own sight deteriorating just a little more, she considers herself to be one of the fortunate ones. Typically, the onset of RP occurs between the ages of 10 and 30, but in her family, it seems to begin later. The genetic fault originates on the side of her mother - née Judith Roberts - and has not affected previous generations of Birdwoods, a distinguished military family (its most notorious member was her father's stepmother, the late Dowager Lady Birdwood, a campaigner for the far Right who stood for the BNP in the 1992 general election). Her paternal great-grandfather was first elevated to the peerage in recognition of service in the First World War, during which he commanded the Australian and New Zealand Army Corps at Gallipoli.
Still, there is no means of arresting its progress. Her 70-year-old mother has been completely blind for the past four years, and her aunt has also lost almost all vision. Sophie is an only child. But she has four children of her own - Olivia, 18, Constance, 16 and Claudia, 13, from a first marriage to Simon Marquis, the 3rd Earl of Woolton; and six-year-old William with David Montgomery - all of whom have a 50 per cent chance of developing RP.
Did she hesitate before having children? "No, I didn't. I've always hoped that research would progress well and that there might be a treatment before my children reach the age where they might develop RP. And my own mother has been this fantastic role model, always very dignified in the face of her own disability. I do think being with her has taken the edge off any fear and trepidation that the children feel. Having said that, of course we all feel this clock ticking ..."
A genetic test is available to determine whether they have inherited the condition - but Montgomery will not let them take it. "Not yet," she says softly. "In a way, I don't want to know; and I don't want them to know. If we suddenly find a treatment, yes, of course. But for now, no."
I meet her at the grand family house - a tasteful, functional, west London pile. "I have the lights on all the time," she says. "It drives my husband mad. He goes around turning them all off as soon as he comes in. We have light battles."
The rooms are sparsely furnished, with no sign, for example, of her husband's 35-year-long career in newspapers, nor any visible trophy from his current media empire. A former editor of the News of the World, and Today (which closed), David Montgomery was chief executive of the Mirror Group for seven years (earning a reputation for fierce cost-cutting and a chilly style of management), and now owns a number of European papers, including the Berliner Zeitung.
But on every wall there is art - much from Sophie's collection of contemporary British painting; and some from her own current series of abstract squares and circles, in subtle greys, dirty whites and olives, inspired by paving stones. Blindness, of course, will end her artistic career completely - and it's this that she finds most terrifying.
"That's the big, big thing. The thing that spooks me the most," she says. "I've always been very visually oriented; I love looking at art and I love creating it. I just don't know how I'm going to sustain myself without it. It's not that I'm sentimental about my own work; I'm not at all. But I do worry about what will happen to my desire to create when I don't have any sight. Where does that go?"
She has started piano lessons and is "hoping that my ears might be able to take over", but isn't particularly optimistic about her musical ability. Indeed, she finds that temporary, partial hearing loss - if she has a bad cold or an ear infection, for example - makes her "extremely tense and very jumpy".
"I have felt the need to paint more and more. I think I'm quite a driven person anyway, but that drive has become much more accentuated because I just don't know how much productive time I've got left."
Her work is likely to change, she says, before she has to stop entirely. Sophie talks about this in a surprisingly detached, theoretical way, as though working out how to solve an artistic glitch or improve a difficult painting. She studied at Cambridge University under the distinguished art historian Frank Whitford, but worked briefly for advertising agency Saatchi & Saatchi before deciding to paint full-time.
"I do find this interesting," she says. "You lose your definition with RP - so, for example, if I leave a dark jumper on a dark blanket, I can't see it. That obviously translates into my work, and I suspect it will end up having more contrast in it, which isn't necessarily a bad thing.
"Similarly my perception of colour will be different to other people's, which again may work perfectly well. I just don't know. The thing is, you can do a fair amount with limited vision. It's losing the lot that ends the art. That's when life really does change, and that's what I really do dread."
In fact retinitis pigmentosa is not a single condition but a term used to cover a group of genetically determined disorders, all of which cause light sensitive cells in the retina to degenerate and die. In the UK, 25,000 families have an RP disorder, and in some, children begin to go blind as early as seven or eight. A related condition called Usher's syndrome is even more devastating, causing deafness as well as blindness. Scientists have identified most of the genes causing RP, and current research is focusing on gene replacement therapy, stem cell biology and retinal cell transplantation (there is even a prototype "artificial retina"), but there is no prospect of immediate treatment.
"All the research is reliant on money, of course," says Sophie. "The British RP Society does voluntary fundraising, but it's always a bit short. On a couple of occasions people have submitted really good research applications to us, but we've had to turn them down - and I find that heartbreaking."
When I tell her that a lot of people thought she was very brave to marry David Montgomery, she laughs and agrees that he's not a "people-pleaser". "He's not a smarmy PR guy, no. He says what he thinks and he's always completely straight. But he's been fantastically supportive with this. I know it's completely contrary to what's always said about him, but Dave is actually quite a selfless person, and I rely on him a lot.
"He's basically very upbeat about it - not daunted or fazed by the prospect of essentially looking after someone who's going to be increasingly dependent on him. He sees my parents, obviously, and how my father has to do an enormous amount for my mother, and it doesn't seem to bother him. If you've got a partner who's frightened by it, or unsupportive, it makes the whole thing pretty nightmarish."
As she sees me out, through a grand hall hung floor to ceiling with paintings, Sophie flicks on the bright overhead spotlights. Of course, life with RP would be considerably worse if she lived halfway up a tower block, instead of in this gorgeous house that she has, in effect, curated.
"Oh God, yes, yes," she agrees. She points to each painting to tell me the name of the artist - and for the first time I notice a very visible squint. "Like I say," she adds with a certain amount of defiance, "I'm definitely one of the lucky ones."
FOR MORE INFO on retinitis pigmentosa, or to make a donation: www.brps.org.uk
