It’s that time of year again when shops and households are getting ready for a night of spooky fun; I’m talking about Halloween of course. My daughters are looking forward to going trick-or-treating with their friends next week and who am I to be a spoilsport?

While they’re excited I am feeling a little uncomfortable about the prospect of wandering the neighbourhood amongst scores of people in fancy dress costume. I used to think this was because I didn’t grow up with the Halloween tradition; back in the 70s and 80s Halloween hadn’t yet reached Sweden and by the time it had caught on I’d left the country.

But there’s one thing not to be that interested in Halloween, another to feel actively uncomfortable with it.  It’s not the ghosts that scare me, nor the zombies; it’s the use of facial disfigurement to represent horror that I take issue with. Continue reading →

Perhaps it’s the weather, the stresses of parenting, Brexit, or my steadily expanding waistline, but this autumn I’ve been feeling a little glum. What’s there to look forward to, I moan to myself as I get out of bed in the morning, shouting at my offspring to do the same. When even an episode of The Daily Show with Trevor Noah fails to lift my spirits, something is definitely not right.

Is it a midlife crisis, I wonder and as if the universe has conspired against me in that very moment an email arrives from the Swedish publishing house that pays my meagre salary: they’ve got a book for me to read asap. The topic of the book: midlife!

But rewind a few days: last week I went to see an ear, nose and throat consultant to find out if anything could be done about my poor hearing and breathing difficulties, both issues arising from having been born with a cleft lip and palate. I’ve got my hearing aids of course, which I regularly ‘forget’ to use because they make my ears itch, but I’d read somewhere that surgical intervention might be able to restore some of my lost hearing.

Dr H was a lovely, slightly awkward doctor in his late fifties and though he was most charming to me, the manner in which he spoke about my past cleft-related surgeries made me feel less like a woman and more like an object. Shining a torch into my wide-open mouth, he remarked, “ah, they did a good job repairing your palate I must say. Not bad, not bad at all.” I smiled uncertainly, not sure whether to take his comment as a compliment or as an insult.

Peering into my nostrils he then sighed, “nothing can be done to improve the nasal passage, I’m afraid. Rhinoplasty on cleft patients is a tricky matter and if you’ve done it once you don’t want to try again or your nose could end up looking like this,” he said and pressed his nose down with a finger. “Besides,” he continued in a more upbeat tone, “the shape of your nose matches your face nicely.” Right, I thought, my wonky nose suits my wonky face, what’s not to like?

But seriously, why is it that doctors, whether or not they’re specialist in anything cleft-related, never think twice about how they address appearance-related issues with me? I was born with a cleft, sure, but I am also a 45-year-old woman with feelings, sensitivities, ego (and possibly a midlife crisis). I am not a specimen to be studied, prodded and evaluated, except that’s exactly how I begin to feel in the presence of these kinds of doctors.

I had a similar experience last month when visiting the hospital for an appointment with a gastrointestinal surgeon. I’d been referred to him because of recent problems stemming from an oesophageal birth defect. On meeting me, the elderly doctor’s face lit up like that of a little child who’s just received his dream present at Christmas. The present, of course, was me, a middle-aged woman with a history of oesophageal atresia with long-term complications. A perfect candidate for his research study, in other words. Not that I necessarily mind being part of a larger medical research project if it can be of any benefit to future patients, but please treat me like a human being and not as a thing.

And as for my present state of midlife gloom, I take comfort from the 17^th-century philosopher Thomas Hobbes’ assertion that life is “nasty, brutish and short,” not from any of the positive psychology, self-help, learn-to-be-happy books lining my bookshelf. I own my misery, damn it!

Ps: to prove that I’m not THAT old, here’s a hashtag:

#patientsarealsohumanbeings

With neither of my children expected home before six this evening, and not a single item on my agenda for today I am presented with an entire day all to myself. That kind of luxury doesn’t fall in my lap often so how to spend this glorious day? I could use the time to catch up on my reading (I’ve got a shelf full of books that need to be read by the end of November). I could pop down to the gym and do a much-needed workout, something I’ve not managed for at least six months. Or I could use this time to get cracking on my next writing project. Come to think of it I have enough time on my hands to do all of these things today.

So how have I spent my day thus far? Sleeping of course, as those who know me best will already have guessed. It’s been many years since I could manage on less than six hours of sleep without sacrificing my sanity. Age, a history of ill health, an unfortunate tendency to wake up at 4 am for a loo visit, and two daughters with hot temperaments and clashing wills, leave me feeling depleted before the end of the day. It also means I absolutely must have seven hours of shuteye and a daily nap, or I’ll become intolerably grumpy, if not outright aggressive. Just ask my family. 

Francesca Martinez, my comedic heroine, also likes to sleep a lot. She even suggests that if people had more sleep, there would be less trouble in the world. Just look at Margaret Thatcher who reportedly slept only four hours a night while prime minister. Says Martinez, “Maybe that was why her politics were so inhumane – she was just cranky all the time. Perhaps right-wingers would be more empathetic if they spent more of their lives asleep.” Given that Donald Trump boasts of sleeping as little as 4-5 hours a night since becoming president, I think Martinez is definitely on to something.

Recent studies on sleep also confirm what some of us have suspected for a long time: lack of sleep poses a real threat to our long-term health. It undermines our immune system and leaves us at much higher risk of heart disease, cognitive impairment, depression and anxiety and much more. Not only did Margaret Thatcher’s restrictive sleep routine leave her grumpy and bellicose, according to sleep scientist Matthew Walker lack of sleep has been linked to Alzheimer’s disease, of which Thatcher suffered. “Sleep alone will not be the magic bullet that eradicates dementia,” Walker admits, but “prioritising sleep across the lifespan is clearly becoming a significant factor for lowering Alzheimer’s disease risk.”

Until a few years ago I still managed to push through with my daily obligations in spite of an almost debilitating lack of sleep, but since recovering from acute pulmonary embolism in 2015, I’m just not capable of that. My body will decidedly prevent me from any meaningful physical and mental activity unless I’ve had at least seven hours’ sleep. After decades of ignoring a multitude of warning signals coming my way, I’ve finally learnt to listen to my body. When in need of sleep, I sleep. In doing so, not only am I looking after my health, I’m also contributing to world peace.

Goodnight.

 

A few months ago, I was asked by Smile Train UK if I’d be willing to make a presentation about the charity to a primary school that was planning a fundraiser in the autumn, and I readily accepted. In the intervening months, a lot of other things kept me preoccupied, so I almost forgot about the presentation until last week when I frantically began to put it together.

My talk was scheduled to coincide with the school’s upcoming celebration of World Smile Day (Friday, October 6th), a day devoted to smiles and acts of kindness.

I must admit I’d never heard of World Smile Day before and I assumed it was a Smile Train invention. As I discovered, however, the concept was initially introduced by Harvey Ball, an American commercial artist best known as the creator of the smiley face and has nothing to do with cleft kids per se.

If I wasn’t already nervous, I became very much so when I entered the school hall and was met by an ocean of red school jumpers. On the floor sat at least a hundred, if not more, boys and girls, waiting for me to begin. At that moment, I silently thanked my 7-year old daughter who in the days before had proven a skilled, and unforgiving critic as I practised my presentation at home with her as my only audience.

“‘Vision’ is kind of a tricky word, mummy,” she said, “could you swap it for an easier one?”

“Goal,” I suggested.

“You need more pictures, as well” she advised, “and tell them about your trip Guatemala.”

Since she represented the age group to which I was aiming my presentation, I took her advice.

The pupils turned out to be a curious and empathic lot. When I asked them to imagine what it might be like for a child living with an untreated cleft, they were spot on:

“Lonely”

“Hard to make friends.”

“Bullied at school.”

“Difficult to eat.”

When I showed them pictures from my trip to Guatemala last year and told them a little about my own experience being born with a cleft, their arms shot up, eager to ask me questions.

“Did it hurt?”

“How old were you when you had your first operation?”

“Did you feel sad?”

“Were you scared when you went to the hospital?”

And some of them offered their own stories of broken legs, sprained ankles, and tummy aches.

Throughout my presentation I showed pictures of children with clefts, some treated others not, and I was struck by how accepting the pupils were of the facial differences displayed on the screen in front of them.

They didn’t find it scary, disgusting or weird and their curious yet sensitive and empathic response reinforced my belief that children are naturally accepting of appearance-based differences but unfortunately as they grow up they are taught by society to recognise and discriminate against others who look different.

***

In celebration of World Smile Day, I’ve set up a fundraising page to help children with clefts in the developing world get the help they need. Please consider becoming a smile maker by making a donation. Thank you!