Fall 2008, Volume 5

Memoir by Juliet Widget

The X Factor

When I was born, after the moon landings, and before the advent of disco, in the dying weeks of the 1960s, people who knew my parents murmured subdued congratulations, mumbling politely that at least I could help with the housework. In Lebanese culture, the first-born should always be a male.

What they didn’t know back then was, while I was clearly sans a masculine Y chromosome, I also lacked the customary second female X chromosome. It was 13 or 14 years before this quirk of nature had a name: Turner Syndrome. No, you probably haven’t heard of it. They hadn’t in October 1969, in the Trad clinic in Beirut, either.

Being short and infertile, and having problems with my hearing, vision, heart, thyroid and weight were just some of the things I could look forward to on arrival. Not to mention the potential emotional, psychological and social difficulties, never mind a latent cackhandedness, a gift for sending coffee cups (inevitably full ones) flying, for making mugs and glasses dance in my hands. But then, as most Turner Syndrome babies never make it into the world, 98% of us spontaneously aborting, it is a miracle I am here at all.  Why I got the chance when so many hundreds of thousands didn’t, I’ll never know. I only know that I absolutely must not squander this against-the-odds shot at life I have been granted.

It’s a curious thing all right, this condition with which I have been blessed. Like dyslexia, diabetes or a mental illness, you can’t see it. The only external manifestations—short stature, a distinct lack of a neck and being markedly on the dumpy side—are certainly not exclusive to Turner Syndrome, and I don’t draw stares when I walk down the street. Nor do I garner leering looks or wolf-whistles: if anything, I am blissfully invisible.  Only when I walk or cycle into a lamp-post, or when someone giving me directions has to repeat themselves four times, do people give me  a second glance.

That’s not to say it never makes you stand out. Once, three of us with similar birthdays who lived near each other decided to celebrate. Just three twentysomethings having a quiet birthday meal in a pub one Saturday night.  As we arrived, a man at the bar looked us up and down.

“Oh, ay, ay, I see the striptease act’s arrived. Changing room’s just through there, love.”

My gorgeous friend Caroline, who also happens to have TS, celebrated her fortieth birthday in a pub last winter. I dragged my friends Ruth and Nigel along, and he was bemused at the sight of so many short women all together. He couldn’t stop himself from remarking on it, couldn’t quite work it out. (Without medical intervention, the average height of the TS woman is 4ft 7 inches. I was pumped with pills and have smashed that all-important five foot barrier.) Ruth, herself boasting the full quota of X chromosomes, kicked Nigel in the shin, and hissed between gritted teeth that she would explain later.

It’s true that if a dozen of us are bumbling down the street or sitting in a restaurant, or blocking the road as we dither hopelessly about what to do next, we do look noticeably different.

Perhaps because it is hidden, it sometimes feels like a shameful dirty secret, my very own skeleton in the closet. My brother doesn’t know that I have Turner Syndrome. At least, if he does, we have never discussed it.

People are shocked, unbelieving, when they learn this. So why don’t I tell him? Sometimes, the feeling of guilt that he doesn’t know is overpowering. But I’m reluctant to confront the issue. If I am honest, it’s not a can of worms I much fancy opening. Perhaps it’s a perverse form of sisterly protection, keeping him, and, yes, me too, from the sadness, and maybe anger, that disclosure could mean. Instead, I sometimes wonder if he has ever questioned why I can seem a little different, a bit of an outsider. Does he shake his head as he tells his friends that his sister’s a bit weird sometimes?

Having been at separate boarding institutions, we lack that solid closeness of other brothers and sisters. Sure, we are fond of one another, enjoying each other’s company, exchanging Christmas gifts and birthday cards, and the usual sibling banter. But our togetherness doesn’t go much further.

As to why our parents have never told Simon, I am stumped, and, if I stop to think about it, not a little annoyed they left me with the burden of the decision of disclosure. Though they never discuss Turner’s with me much, either. Maybe I cope so well, or appear to, that they forget the conversation with the consultant who gave them the full story more than two decades ago.

My parents hate anything that shatters the notion that everything is perfect in our idyllic, nuclear family, preferring to steer clear of all things emotional. I seem to have inherited this trait - whenever Mum calls, I always tell her that everything is fine, whether it is or not.

Disclosure is always the thorniest of issues, a minefield fraught with potential pitfalls. Who, and what, how much to tell? I have, before now, got it spectacularly wrong, and blurted out crashingly inappropriate things at completely the wrong time.

People who have known or worked with me for years have no idea that I have it, and I confess I am generally reluctant to discuss it openly. Sometimes I think people will treat or perceive me differently once they know; sometimes it feels like a burden I don’t want to lumber them with. Much easier to keep it neatly tucked away, out of sight, as my parents do.

My boss, an excitable French woman, who, in bleaker moments I call the Breton Bitch, and who with Morose Marie and Pat out of Hell forms the toxic trio who poison my office life, has noted with disapproval this tendency to bottle things up.

My father has never told me he loves me. Yet I have no doubt that he does. When we lived in Switzerland, when I was a teenager (I would say a young slip of a girl but I am not sure the expression ever applied), I was dragged out on a family walk, and struggled to reach the top of some mountain. Dad was watching from the top, looking at me intently, eyes ablaze with tenderness. He said three words—my little girl.

My mother cried when she saw me that first weekend they let us home from boarding school, weeping because I looked so small and unprotected. She, too, loves her me in her way. Yet I have a lingering sense that I have been a disappointment to her. I am not a willowy, hostessy type, entertaining and wafting around with trays of canapés like she was. “So glad you are having cookery lessons,” she wrote to me at school. “You will never catch a good husband if you can’t cook!” Her first concern, on learning that I would have to use hearing aids was to worry about how these devices, admittedly unsightly, would affect my appearance.

Rather than emotionally, parental concern expresses itself in practical ways. They are more worried about my travelling home late at night, more eager to offer lifts, and repair bike punctures and central heating systems than would probably be normal for a daughter hurtling towards 40.

The one thing they will not do is talk to me about what it’s like to have this condition, to feel, as I have done all my life, that I half-belong, that I have one foot in ‘normal’ society, the other out of it.

I say one foot in because I do many of the things that people without TS do—job, friends, own flat, Alleged Boyfriend—and a few they generally don’t—jumping out of an aeroplane, biking across Cuba and going to Central America for three months with a bunch of strangers spring immediately to mind.

One foot out because of course there are some things I will never be able to do. (It seems unlikely that I will ever master Olympic hurdling or dance the lead in Swan Lake for the Royal Ballet.) Oh, and driving a car, one of the few things on which I have had to admit defeat, a rare exception to my golden rule that Turner’s must not stop me from achieving anything I truly want to do.

While arguably the most significant contribution to road safety since Goodyear Tires, my not driving is something many find hard to fathom. People are curious and want to know why. Mostly, I laugh it off. I joke about psychiatric wards populated by my former driving instructors and examiners. What I do not say is that I have something called Turner Syndrome which affects perception of spatial relationships, and motor control. (In more ways than one!) Instead, I cycle everywhere, including into cars, the backs of lorries, railings, concrete bollards and other cyclists. But I have survived. Behind a wheel I may not have.

In another unasked for by-product of the condition, I am hard of hearing, and this can heighten my sense of alienation. It made me a lousy Samaritan, too. I did the training, but left out of kindness to suicidal types everywhere, who probably had enough to cope with without repeating themselves to the deaf stranger at the end of the line: “Sorry, how did you say you were planning to, you know...”

At parties, at benches in pub beer gardens, at restaurant tables, alarmingly often in work meetings, I sit in my own dreamy little universe, smiling or chipping in the odd comment, just enough to give the illusion that I am following. I have spent entire evenings at dinner tables barely uttering a word.

Similarly, at school and university, I hovered on the fringes of clusters of friends. A marked lack of physical prowess made me rarely a first choice for sports teams. The only time I got to represent the school, at diving of all the unlikely things, I became quite delirious with excitement at the prospect, a display of emotion regarded by many as unacceptably uncool.

I was left behind as my classmates started their periods, acquired boyfriends, and it took me a while to catch up. (The boyfriend thing did not happen until my thirties.)

School plays, though, were another matter, and I strutted the stage with embarrassing frequency. For some reason, we TS girls love an audience. Drama helped me feel part of school life, and I found it comforting to hide behind a character on stage. Being Mrs Hardcastle in She Stoops to Conquer, or one of the crude mechanicals in A Midsummer Night’s Dream, offered the perfect chance to take a break from being me.

Each play created its own little cosmos, its own unique bubble, cruelly popped as the final curtain fell, a moment which, for me, was always tinged with an intense sadness that something special had vanished for ever. For I have always been ridiculously sentimental when it comes to things ending, openly blubbing on last days of jobs, homes, summers and houseshares.

The feeling that something new and different lies ahead can fill me with a rising sense of panic, a classic Turner’s trait. For I am a stickler for routine, completing the same activity at exactly the same time each morning, and even a day out of the office to travel somewhere different can fill me with anxiety. 

A tendency to feel fear, to startle easily, is another well-documented trait, and there has been some scientific research into this. When I stayed in Namibia once with a friend who lived there, a friend of hers slipped in after we had retired, and flitted unannounced through the sitting room where I was sleeping on her sofa. He was just larking about, but the sight of this shadowy figure had me screaming fit to blow the roof off. I kept on yelling, even after I had realised nothing was wrong, despite the soothing words and reassuring stroking from my friend.

Not being able to conceive also makes you feel as if you have one foot out of ‘normal’ society. If people ask me about children, I mumble vague responses and change the subject. I was in the car with the school nurse, Angela, after a hospital appointment, reading a leaflet about Turner Syndrome when the reality of my infertility fully hit home. I did not ovulate or have ovaries. I could not have babies. Angela had one arm round me and another on the steering wheel, and glanced at the road as she told me that it wasn’t hopeless, that there were options. We had tea and cake in her vast but cosy kitchen before she dropped me back at school, where I looked at my classmates, heads bent over their schoolwork, and wondered about the families they might have. I did not tell them what I had just learnt. Some time later, Angela invited my parents to her house for tea so that we could have a good open chat about everything. And Mum and Dad were indeed very open—about how nice her garden was.

More than two decades later, I don’t think about my childless state that much. That’s not to say it never hurts. I once saw a woman on a train brushing a small child’s hair, burying her nose in the little girl’s curls as they giggled together, and was surprised to feel a small stab of pain. Another time, in a Masai village, one of the women asked how many children I had. Not whether I had any, but how many.  That small stabbing sensation again.

Andrea, a software consultant from Milan, ended our brief romance soon after discovering I would never be able to give him children. At 34, it was the first time I had been forced to confront my infertility, and it hurt like hell.

When I am dredging Freecycle, the online, cashless way of passing on stuff, among the admittedly tempting offers for out-of-date Pot Noodles, unopened packets of condoms and expired train tickets to Basingstoke, I find myself deleting the ads for high chairs and nappies most quickly.  

I am sure my parents would love grandchildren, though they are too tactful, too full of that deep-seated English fear of causing a scene to say so. They are at least not like the mother of one TS woman I used to know, Melanie, who, over breakfast one morning, sighed and asked her daughter when she would stop being selfish and give her grandchildren.

I met Melanie through one of the various support groups on offer. These can be a mixed blessing, and, in recent years, I have gone to their meetings less and less. Arrogantly, I have even told myself that I have ‘grown out’ of them. The truth is that having lunch with a group of TS women sometimes feels like holding up a mirror, and I don’t always much like the image that is reflected back. These women inspire affection and irritation in equal measure, and, when I am with them, it is easy to see how I do the same.

Yet we understand each other in a way that someone without the condition cannot. I can telephone Jennifer, and tell her about my hospital appointment, or that I have just had to tell my boss about Turner’s, and she will know. She has been there, too. The support is given unconditionally.

You wouldn’t choose to have TS if you were granted three wishes, but, if I had those three wishes now, would one of them be to be cured? Is the condition so closely woven into the fibre of my being, so intrinsically a part of me that I cannot contemplate life without it? I was travelling home once when I saw a newspaper billboard at a station: Miracle cure for genetic disorders. It got me thinking. Living without Turner Syndrome was scarily unknown territory.

For, though I sometimes loathe it, it has made me who I am. Turner Syndrome heightens your emotions, like a mild form of bipolar disorder, making you feel more intensely alive. The bad days are worse, the good days better, than for other people. Would I be where I am or who I am today without it?

But I love that so much of my life has nothing to do with Turner Syndrome, that people don’t know about it. My friends from the Berkshire Walkers don’t, for example—a bewildering array of groups within groups, couples and cliques, a complex web of friends, sworn enemies, those who pretend to be friends, lovers and ex-lovers. People leave, join, fall in and out of love and friendship—we swirl in a constant state of flux.

It has been an ideal place to meet friends, acquaintances and the odd Alleged Boyfriend. It’s a good way of trying people out. You sit next to them in the pub, or walk with them for half a mile. If you don’t like or fancy them, you just give them a wide berth next time.

It was on a walk that I first met Graham. Still reeling from the end of the affair with Andrea., I was in no mood for stilted small talk with some geeky, lanky stranger. I wanted the comfort and company of people I already knew, or at least to walk alone with my thoughts.

It was only weeks later, when someone mentioned that Graham loved books, that I obtained his email address by devious means. I wrote to him, we met up; the evening fizzled to an unpromising conclusion. Not renowned for being the swiftest of workers, he called a year later, on Valentine’s night, just as I had resigned myself to an evening of pleasant solitude. We gave it another shot.

The second date, a film, was followed by a third, a jazz gig, and a fourth, until they were no longer dates but ‘coming over,’ until the Saturday suppers that I spent all day fretting over became hastily thrown together Friday night meals on the sofa, shoes kicked off, TV on.

I told him about TS one summery evening, having made him take my hand across the dining table first. (We were still eating polite meals then.) He listened, taking it all in his imperturbable way, said it changed nothing and asked what was for pudding.

Now, after 12 months of semi-detached coupledom, we are reluctant to leave the certainty of our cosily ordered separate flats for the unchartered waters of joint domesticity, of mingled finances, bookshelves and laundry baskets. I refer to him as my Alleged Boyfriend more frequently than I describe him as my partner, or, in that wonderful Spanish expression, the other half of my orange. Yet I think of not seeing him again, and I know I would be done for.

Sunday morning. I lie in bed next to Graham as he reminds me of the rule—my flat, my turn to make the tea. I beg for five more minutes, just five, as he rolls his eyes and says he knows all about my ‘five minutes.’

I wander dreamily into the kitchen. The kettle bubbles and clicks off. When 98% of people who were fashioned in the same mould as you never made it, when there are others barely capable of riding an escalator on the Tube, you don’t even take being able to make a cup of tea for granted. I have had to wait nearly 38 years to feel I have my place in the world, and I am relishing every second.

I nudge the bedroom door open with my left foot and pad in, a mug in each hand. He is sitting up, flicking through a colour supplement, the weekend paper fanned out over the duvet. No doubt there will be dark times ahead, days when I cry on the train, or feel like throwing things at the kitchen wall, no doubt sometimes the sense of being an outsider will linger, but not today. Today, there is tea. We will drink it together, saying little, my head resting on his shoulder.