Time to Be

On 4th June 2015, I posted my first ever blog post, Faces, and anxiously – petrified, more like it – awaited the consequences; would I self-combust in a cloud of shame and humiliation? Would anyone, other than my parents, even bother reading my blog?

Three years on, I’ve got more than 150 blog posts under my belt, and according to WordPress statistics and, more importantly, the response I’ve received, more and more people are reading my blog, which is fantastic.

When I first began blogging, I mainly wrote personal stories about how being born with a cleft lip and palate came to affect my life, but gradually other stories made their way into the blog, stories about motherhood, stories about other people, ruminations on disability and disfigurement in general and specifically how society today still discriminates against those who don’t conform to what’s considered ‘normal.’ With Brexit, the election of Donald Trump in the US, and growing xenophobia at home and abroad, I also felt compelled to address some political issues in my blog.

Whatever I wrote, I’d made a vow to myself to post a blog every Thursday without fail, and it’s a vow I’ve kept until today. For the first time in three years, I am giving myself a break from blog writing. Next week, my daughters and I leave the busy-ness of London behind for a much-needed summer holiday in Sweden, where I plan to eat lots of strawberries, read good books, go for long walks in the countryside, hug a few trees and absolve myself of any duties beyond ensuring that my kids are fed (yes, ice cream counts as food) and don’t drown in the Baltic Sea.

In general, I am aiming to do as little as possible during my summer holiday and to simply be in the moment as much as I possibly can.

I always think of the year as running from September to August rather than from January to December, and this year, which is soon coming to an end has been an extremely busy year, not just for me, but for my children and my husband as well. It’s been a year with a heavy emphasis on doing and achieving as if these were the most important aspects of human life. But they’re not. Being is just as important, if not more.

Nonetheless, I am steeped in the religion of hard work and ‘simply’ being does not come naturally to me, so much so that it took a serious medical emergency for me to wake up to the importance of being in the present. An unexpected pulmonary embolism a few years ago left me physically incapable of doing much at all since I struggled to breathe every time I got on my feet, leaving me with no choice but to be in the moment, rather than always be heading somewhere.

Although I am fully recovered, I retain the lesson learned from my illness; that doing without being is bad for you. So, that’s why I am taking a break from everything, including my blog, until the end of August. Until then, have a great summer everyone, and remember to take time out for yourselves to enjoy the moment.

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Tribute

Growing up with a medical condition that required repeated surgery and having to withstand spiteful comments about my appearance from bullies, I had no choice but to develop a thick skin. I didn’t cry, I refused to give my bullies the satisfaction of seeing me cowed and humiliated, so I always fought back. I was my own fiercest ally and the only person I could fully trust.

But my stoic persona can’t withstand the acute pain of watching my child have her spirit crushed because she doesn’t quite fit the bill. She’s a beautiful girl, with a heart of gold who dreams of making her mark on the world. She also has dyslexia, which means she’s had to work twice as hard as her friends to get to where she is today. Her road is never going to be straight and smooth, but with determination, passion and a healthy belief in herself, she will make her dreams come true. There will be people along the way to support her, who will appreciate her for who she is, just as there will be those who sadly aren’t able to see beyond the dyslexic label, dismissing her as sweet and pretty, when the truth is she’s infinitely more than that.

Unlike me, she wears her heart on her sleeve, and I know I can’t shield her from the pain that life inevitably brings. But, I hope she will always feel safe enough to share her pain – and joy – with me, and that she’ll never grow a skin so thick she no longer feels anything.

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Spring Cleaning

retro-1291608_640I’m an obsessive cleaner. If I spot a few bread crumbs on the kitchen floor, I immediately grab my cordless Dyson and zap them. For serious hoovering, nothing beats my Miele.

Wet towels on the bed, dirty clothes on the floor, and jam stains on the kitchen counter make my skin crawl, and I can’t go on with my daily business until everything is clean and tidy.

Given my obsession with cleaning, you’d think our house is spotless, but alas that’s not the case. My daughters share none of my passion for tidiness, and on a bad day, their rooms look like a disaster zone. And as I write this, I notice that my desk is cluttered and disorganised, and there are coffee stains on my tax return form. For someone so obsessed with cleaning, I am remarkably messy.

Lately, my compulsion to clean has extended to the digital sphere as well. The other day I spent much of the afternoon decluttering my mobile phone, deleting apps that I’ve never used and never will.

In a bid to cure my phone addiction, I made the radical decision to ban my phone, including charger, from the bedroom.

Having removed every bit of digital technology from my bedside table, I fetched a simple analogue alarm clock from storage and set it to wake me up this morning. I must admit I checked the clock several times before turning off the light, to make sure it was all set. Putting my faith in something as old-fashioned and unreliable as an ordinary alarm clock caused me a fair bit of anxiety; would the alarm go off as intended, and would I hear it? Or would I oversleep, making the girls late for school?alarm-clock-2175342_640

You might think me completely neurotic, but I’ve got a reason to mistrust alarm clocks. Years ago (in the olden days, as my eight-year-old calls the 1990s), I once overslept the morning of my final exams in college. I’d set my alarm, but exhausted from a night of studying, I slept through the alarm and only woke up an hour after I was supposed to have been commencing my first exam. Panicking, I threw on some clothes and ran for my life. Minutes later I was standing in the door of the classroom, looking like a madwoman, but the compassion of my professor saved me.

‘Go and get some breakfast, and come back and sit the exam,’ he said.

As soon as I’d finished writing the exam, I went to the nearest shop and bought two new alarm clocks, and for the rest of my time at university, I used all three to ensure I never overslept again.

I didn’t oversleep this morning, although I only had one alarm clock. In fact, I felt oddly liberated, as if I’d already cured my phone addiction, which of course I haven’t. But, not having my phone next to me at night-time meant I wasn’t tempted to check if for emails, text messages or news before going to sleep or when waking up in the middle of the night, as I often do. Instead, I just rolled over and went straight back to sleep.

It’s early days of course, and since waking up, I have looked at my phone a number of times, but it now sits, not on my desk or bedside table, but on a shelf, hidden from view. And it feels good, really good.

 

Humanity Betrayed

I was four weeks old when my mother held me for the first time and three months old when I was finally discharged from hospital and allowed to join her and my 3-year old brother at home.

It was the early 1970s and parents were not allowed to stay with their children in hospital; visitations were strictly regulated, and at the Red Cross Hospital where I spent my first few months, the head nurse actively discouraged mothers from visiting their offspring. Therefore, my primary caregivers those first crucial months of my life were nurses, rather than my mother, although she visited as often as she was allowed.

shutterstock_794968318My earliest childhood memories all share a common theme: separation from my mother as she had to leave me, a toddler and a young child, in a hospital ward.

Although the separation was always temporary, I was too young to understand that, and more than forty years later I still vividly recall the image of me sitting in a hospital bed, crying with fear and anger at having been left there by my mother.

Child psychologists today widely recognise that mother-infant attachment in the first few months of a baby’s life is crucial to children’s long-term emotional wellbeing, and sure enough, I have had my share of attachment issues in life, owing at least partially to the fact that I was separated from my mother for a prolonged period shortly after my birth. Years of therapy have helped me come to terms with much of the pain I experienced as a child, although there are moments when that acute existential pain I once felt makes itself known again, such as when I visited cleft-affected babies in a hospital in Guatemala, and this week, taking in the news of migrant children being forcibly separated from their parents at the US-Mexican border.

Following public outrage in the US and abroad, Donald Trump signed an executive order yesterday to end the policy of separating children from their parents at the border – a policy that his administration callously employed in order to deter further people from trying to cross the border – but more than 2000 children have already been taken away from their parents, and there is no system in place for securing their reunification. Child psychologists have already spoken out about the life-long psychological scarring that may result from prolonged separation and detention. Others have pointed out that amongst the children currently in US custody, some have special needs, including Down’s Syndrome, and for these children enforced separation will be particularly cruel.

Comparisons to Nazi Germany, the Pinochet regime in Chile, where hundreds of children born to parents who were either detained or ‘disappeared’ were given to regime-friendly families, and the stolen generation of Aboriginal children in Australia, to name but a few examples, are not exaggerated. We would like to believe that the past won’t repeat itself, that the words ‘never again,’ mean something, but the reality on the ground tells a different story. Progress aside, we still live in a world where the truth of our common humanity continues to be sacrificed at the altar of xenophobia, racism and greed.

Ghosted

shutterstock_1084780622I’ve been ghosted. [1]

By my gardener. Well, he wasn’t mine, to begin with, I suppose, but for me, it was love at first sight. Platonic love, of course, but still.

I had high hopes for the garden. Three years after we moved into our house in North West London, and following several false starts, it seemed my husband, and I had finally met someone who understood what we wanted to do with the small plot of land we call a garden.

Mr Gardener swept into our lives and dazzled us with his impressive knowledge of all things horticultural and a dreamlike vision of what our garden could become. My husband was finally going to get his herbal garden, and I would have my roses. It didn’t hurt that Mr Gardener was a tall, handsome man with a delicate manner and a voice that seemed to sing rather than speak. I was completely seduced, and in fairness, so was my husband.

It started out well. Having paid a 60% deposit, Mr Gardener came as planned to clear up the green area in front of the house, rearranging plants and inserting some much-needed colour. My husband and I loved it and couldn’t wait for him to tackle the main garden at the back of the house. Confidently, we paid another deposit into Mr Gardener’s bank account and looked forward to the day he was scheduled to come again.

Except, he never came.

My husband called him, no answer. He left a message.

‘Where are you? We thought it was today you were coming.’

We heard nothing back, so my husband called again and left a new message.

‘What’s happened, are you alright? Please be in touch.’

Still no reply.

We kept calling him for a week, but all we got was his voice mail.

‘Something must have happened to him,’ I said. ‘There must be an explanation.’

Two weeks of no contact and my husband started leaving threatening messages on Mr Gardener’s voice mail.

‘If you don’t call us back, we will have to go to the police.’

Still no response.

‘We’ve been had’ my husband said three weeks later. Although my head agreed with him, my heart kept coming up with excuses for Mr Gardener’s absence.

‘Maybe he’s been in an accident?’, ‘or Home Office has deported him,’ ‘or he’s been attacked and is lying injured and incapacitated in hospital.’

‘No, Jenny, we’ve been conned.’

‘But he knew all things about gardening,’ I protested. ‘He wasn’t a fraud.’

A month and a half later, I’ve finally resigned myself to the fact that we’ve been ghosted. But even though we’ve found a new, honest, gardener who seems to know what he’s doing, I can’t help wishing that Mr Gardener would come back. All would be forgiven.

 

[1] [Ghosting: when a person cuts off all communication…with zero warning or notice beforehand. Source: urbandictionary.com]

 

Writing The World As I See It

In the last week, I’ve learned a lesson about blogging: the title matters more than I thought. While I might agonise about the contents of my blog, I rarely think much about the title for each post. So last week when I wrote about racism and white privilege, I lazily titled my post, White Privilege. In hindsight, I should have given it a more appealing title if I wanted to get my readers’ attention, because this blog post, as important and as heartfelt as it was, turned out to be one of the least read posts I’ve written since I started blogging nearly three years ago.

In contrast, any blog I’ve written on the travails of motherhood has consistently attracted at least twice as many readers as my post on racism did. The only topic less attractive than racism, it appears, is disfigurement and disability, which after all were the focus of my blog when I first started out. Continue reading

White Privilege

One of the many reasons I love living in London is the city’s diversity. Take the street I live on, for example. I have neighbours from India, Nigeria, Japan, Jewish neighbours and Polish neighbours. And English neighbours too of course. When I recently blogged about self-identifying as a Londoner, I came in for some criticism from a commentator who insisted that only those who are born and bred in London could rightfully call themselves Londoners. I beg to differ. For I don’t believe that identity and belonging are set in stone or determined by bloodline or place of birth. Rather, as my own history tells me, identity is fluid. Continue reading

No, it’s not ‘just entertainment’

A couple of weeks ago I found myself having dinner out with a bunch of middle-aged parents (myself included), something my husband and I enjoy now and then.

Now, what do you talk about when you don’t want to talk about your kids (you’ve got the night off after all), and any topic surrounding the aches and pains of being middle-aged has already been exhausted?

Movies of course! Everyone loves movies, don’t they?

“What’s the one film you’d see over and over again?” someone at the table asks, prompting the eruption of a cacophony of voices. Everyone has a film, it seems, that they love above all else.

“I just love Wonder Woman,” someone says, and several mums nod enthusiastically.

“It’s a fabulous film.”

“It’s so empowering.”

“I watched it with my daughters, and we all loved it.”

Now I don’t particularly enjoy being the lone contrarian in a conversation, especially when I am stone-cold sober, which is my permanent state these days as I no longer drink alcohol. But sometimes I just can’t shut up.

“Actually, I have a problem with Wonder Woman,” I say, and at once the mood at my end of the table drops markedly.

“Why?” someone asks, looking at me incredulously.

“Well, if you have a scar across your face or any kind of facial ‘disfigurement’, you may not feel at all empowered by Wonder Woman,” I say.

I’m referring to one of the main villains of the film, Dr Poison, who wears a prosthetic mask to conceal her visibly scarred face. Like so many of Hollywood’s famous villains – Darth Vader, Freddie Kruger, countless James Bond baddies, etc. – Dr Poison’s evil character is directly linked to her facial disfigurement. As in so many films, the implicit message here is that beauty = good and ugly/disfigured = evil.

These villains, including the actress portraying Dr Poison, are almost exclusively played by actors who do not have any disfigurement but are made to look the part with the help of makeup and prosthetics.

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“Come on, Jenny,” someone at the dinner party says, “it’s just entertainment. It’s only a film.”

No, it isn’t. It isn’t ‘just’ a piece of entertainment for people – and in this case young girls and women in particular – living with a condition that affects their appearance, many of whom struggle daily with bullying and discrimination because of the way they look.

How disfigurement (as well as race, gender, sexual orientation etc.) is represented on the movie screen matters a great deal. We may be oblivious of the subliminal messages conveyed on the movie screen or dismiss them as ‘just a bit of fun’ but the reality is that what we – and our sons and daughters – watch on the screen influences the way we interpret the world around us.

I for one love my scars, and there’s nothing scary or evil about them. And the fact that I may sometimes be a bitch has absolutely nothing to do with my disfigurement.

Break the Silence

I am a boring mum.

That’s my eight-year old’s verdict.

My crime? I don’t play with my children often enough.

“Play netball in the garden with me, mum.”

“Not now, darling, it’s too late.”

“Play Top Trumps with me.”

“Not now, sweetheart, I am reading the papers.”

“Play Monopoly with me.”

“Not now.”

Frankly, I’ve never been much for playing board games. I’d rather read a good book.

When my daughter recently celebrated her birthday, one of the many gifts she received from friends and family was a game called Hearing Things: the lip-reading challenge and, in an attempt to pick up some house points, I agreed to play. Continue reading

Cleft Truth

When I was little, 1st of May was the day I’d climb onto my stepfather’s shoulders as he marched through the streets of Stockholm in support of workers’ rights. Perhaps that’s how I acquired my activist streak, although I’m ashamed to admit I’m a little lazy these days and prefer to conduct any activist activities from the comfort of my home.

The problem with being an armchair activist, however, as I detailed in a blog last year, is that for the lesser disciplined, like myself, the temptations of Netflix sometimes proves too much. That’s why this year too, I nearly missed Cleft Lip and Palate Awareness Week (5-13 May).

But although I’m a few days late to the party, I want to do my bit for raising awareness about cleft. As a proud cleftie, I want to begin by stating loudly and clearly, that being born with a cleft lip and/or palate is NO TRAGEDY. There’s no need to feel sorry for me or the millions of clefties out there in the world. The tiny scars on our upper lips aside, we are no different from the rest of you.

Why do we need a special awareness week for people born with cleft, you might ask? Because ignorance and prejudice around cleft lip and palate are still more widespread than they ought to be. Because we live in an appearance-obsessed society where the definition of what is normal and beautiful is exceedingly narrow. Because, as a recent study by Changing Faces reveals, two-thirds of people hold a negative bias to those with a visible difference, such as a scar.

Here are a few useful facts about cleft, courtesy of the Cleft Lip and Palate Association:

  • A cleft may mean a baby looks different, but it doesn’t hurt.
  • Cleft is a physical issue which, by itself, has no effect on a baby’s cognitive development. It’s not linked with learning difficulties.
  • It’s not a disability, though some children need extra help with their speech and hearing as they grow up.
  • A cleft can usually be closed in one or two surgeries before a child’s first birthday, but the treatment pathway is 20 years long. It’s not a quick fix.
  • Just like every child, every cleft is unique, and every family will face unique challenges.
  • Hospital appointments and operations aren’t fun for anyone, but for many people, the most difficult part of being born with a cleft is dealing with public ignorance and the reactions of others.

That last point is particularly important to highlight, I believe, and resonates strongly with my own experience of having been born with a cleft. As a young girl, it wasn’t the cleft itself that was the biggest issue for me, but the way in which adults and children around me reacted to my cleft. I didn’t need anyone’s pity, all I wanted was to be treated as the full human being I was and not be defined by my cleft. However well-meaning, people’s pity left me feeling patronised, humiliated and dehumanised. And absolutely furious. It was as if these people didn’t really see me, the person beyond the cleft.

Surgery to close a cleft is necessary for the sake of long-term health and well-being, of course, but that doesn’t mean that a baby born with a cleft isn’t just as whole and perfect as any baby that comes into the world.

Admittedly I’m biased, but in my world, there’s nothing more beautiful and life-affirming than a cleft baby’s broad smile.

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