Monthly Archives: September 2016

My second first day at school

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Mean Girls, basically a documentary about my first day at English school. Though I never got popular.

My very first day of school, I was excited. I couldn’t wait. I proudly put on my school uniform – white dress, white socks, white shoes , school badge – and went off. My mother hovered around the door waiting to see if I would join the chorus of sobs around me.

“Go home, no need to stand by the door. I’m alright Mum. Go home!” I said, and sent her on her way. I was five years old.

My second first day of school was a little different. I was 14 years old, wearing a tie and blazer for the first time in my life, my hair neatly tied back into a tight braid, like I always did at school in Pakistan. I sat outside the principal’s office, waiting. My mother asked if I wanted her to stay with me, and I said no, I would be alright. The truth is I desperately wanted my mother to stay.

But I knew that it wouldn’t make my life any easier if she did. I’d still have to go to a new school on my own tomorrow, so I cut to the chase and decided I might as well jump in the deep end. I remember thinking how cold it was for May. Just a week ago, I’d been in the blistering heat of a Pakistani May. The school uniform I was wearing now was a world away from my white cotton shalwar kameez. I liked it, though. I felt very smart in it.

The principal came and escorted me to my new class. I smiled expectantly at my new classmates. I was met with a sea of bored faces. No one smiled back. I was sent to shadow one of the other girls in my class until my own class schedule could be prepared. My teacher, Mr Yates, found me a free seat and sent me to sit down. Next to a boy. More details of my horrified reaction here.

Even though I spoke the language, I found that first day of school incredibly hard. I tried desperately to act like everything was fine. I asked a few times when school finished. “Twenty to.” came the reply. I’d never heard time told like that. Twenty to what? I felt I should know that, so I didn’t ask.

I was used to classes that began at 7:30 and finished at 12:30, with 40 minute lessons crammed in back to back and one 15 minute break. I couldn’t believe how long the school day was in England. It just went on and on. And you had to change classes. We didn’t do that in Pakistan either – there, the teacher came to us. It felt like a madhouse. So much noise, so much talking, such a big school, so many corridors. Just pure confusion.

And the kids – my peers were so rude, both to each other and to the teachers. I stared in shock as they answered back. They chewed gum in class. At my old school, we were not allowed to have our hair loose. Here, the girls wore it any way they liked, and in all sorts of colours – had my tight, frizzy braid been a mistake?

I spent most of my day with my cheeks burning red – the language! The profanity! And I didn’t know 14 year English boys were so burly. They were not kind or polite at all. They were crass, and rude, and HUGE! They stomped around like giants. Some of the meaner girls wanted to take a detailed history of my love life, and when I had absolutely nothing to report – no first kiss, no first anything – they looked at me like I had just arrived from the moon.

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Which boy do I like? How about none of the above?

My brain was going into overdrive, trying to take notes for things that might be useful for me to settle in and find a place in the social order of the school. But by the afternoon, I’d given up. There was simply too much ‘new’ for my brain to register and file away.

I came home with a pounding migraine after that first day of school and burst into tears. I insisted my parents had made a mistake. This was all too much, we should go back to Pakistan. But after I calmed down, I got up the next day and went back to school again.

And eventually, it wasn’t so bad. Whereas under the Pakistani school system I was an average student, under the British system, where you were encouraged to think a little more freely and not just memorise texts, I was considered above average smart. This was a huge confidence boost for me, and I flourished academically.

I’m thinking of all this today because today refugees around Greece will start going to school. This will be a combination of special schools just for them and integrations into the Greek schooling system. I’m remembering my panicked, blushing, horrified, exhausted and tearful 14 year self, who could at least speak the language, and hadn’t come from the incredibly difficult backgrounds they do. I’m wishing them all good luck and this little message from me:

Stick at it. I hope it’ll get easier.

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More good advice from Mean Girls

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With a little help from my friends (and pills)

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I try to avoid writing these posts. Mostly because they scare my mother, who thinks I am utterly miserable, to which I wave my boxes of Xanax in her face and say “I’m okay, Mum!”

No, really, I’m okay, most of the time. Sometimes, I’m not though. Sometimes I just don’t know what to do with myself. My life feels like an impossible mountain I’ve been sent to climb with a spool of string instead of rope helpfully tucked into my pocket by the Universe. And as wonderful as it is to mark World Duchenne Awareness day each year because it brings us one step closer to the cure, it’s also involves me coming face to face with the fact that all is not right in my world. I’m not always up to that task.

Remember the movie Run Lola Run? Whenever the scenario doesn’t play out the way Lola wants, she goes back to the start of it to try again. This is the feeling I had the moment I was given Hermes’ diagnosis.

My brain just couldn’t process what I was hearing. My son has what? No, you’ve got it all wrong. That’s not what you were supposed to say. I came here today for you to tell me that the genetic test was normal, my husband isn’t even with me, that’s how ordinary this conversation was meant to be. You’re not supposed to be telling me my son has Duchenne. Go back to the start and tell me something different, tell me what you were meant to say, which is that everything is fine.

I think of that moment still, though not as often as I used to, because it represents the moment my life was cleanly cut from the path it was following and set on another one. For the first year or so after Hermes’ diagnosis, I obsessed over that moment. It played out in my head again and again, as if I was trying to retrace a terrible mistake I’d made and trying to work out all the various things I could have done to make it right. It was if my brain felt it was missing something, some small clue or detail.

Where was it? Where was the one thing I had missed that would unravel all of this mistake and put it right? Was it how the doctor’s assistant didn’t look me in the eye when she came into the room? Was it the two spots she pointed to on the paper in her hand she showed him, saying quietly “Here, and here”? What did that mean? What did “here and here” mean? Where was the clue? Was it in the way the geneticist clasped his hands in the seconds before he changed my life? Where was the clue?

If I could just find it, I’d unlock what had gone wrong and be able to set it right. That would be my Eureka moment. But even my frantic brain knew somewhere that that wouldn’t happen.

In my weak moments, I’m resentful of being reminded of Duchenne in my lives. Hermes is starting to struggle a bit more, and when I hear the impatient kids on the stairs of the slide behind him stomping their feet and yelling at him to move faster, I really want to let rip at them. Very, very rarely, I am angry with everyone else for being able to walk away from my life, when I have to shut the door behind them and go back to living it every day.

I don’t mind telling people about Hermes, but there are times when I’ve got so used to this reality that I forget the impact it might have. I’ll flippantly mention life expectancy, and the next thing I know the person I’m talking to is sobbing. Whoops! “It’s okay!” I say cheerfully “It’s not so bad!” Cue more sobs.

The truth is that often, life is okay. It’s fine. It really, truly is not so bad. We’re happier than a lot of people. Having such a shadow cast over our lives has made us appreciate the light much more. Eating a delicious slice of melon turns into this year’s landmark event – “remember the summer of 2016 when we ate that really delicious melon? Those were the days!” We save the seeds for planting later, knowing exactly that we’re much too neglectful of our plants for them to ever bear fruit. We’ll ignore that, and plant them anyway.

Our joy is in our life as a family and the friends who rally around us – even a small gesture like changing your profile picture to a Duchenne balloon means so much. So, despite it all, somehow we do find a way to be happy in our new reality, and for everything else, there’s Xanax.

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A year since Aylan Kurdi’s death, Europe has gone back to not caring

web-refugee-crisis-7-twitterIt was one year ago today when an image raced around the globe, an image which broke hearts and enraged sentiments. It was an image that made us question ourselves as human beings and wonder with how much shame we’d look back on 2015 and the way in which we failed the child in the picture, and so many like him.

A picture of a little boy whose name meant ‘exalted’, lying face down and lifeless on a Turkish beach. In the early hours of 2 September 2015, three year old Aylan Kurdi lost his life. His picture shook many of us to the core, and like so many mothers, I saw my children in him. I saw the curve of my younger son’s cheek, the way he sleeps with his bottom raised in the air. I saw his little shirt, his shorts and his shoes, and I thought about the mother who had dressed him before they got onto that boat.

Were the clothes warm enough? Should he wear open or closed shoes? Would he need socks? Maybe not. But what if the wind picked up? Finally she must have decided no socks, it was a warm night. How do you even decide what to dress your child in for a journey like that, I kept wondering as I looked at the little shoes that were supposed to have stepped onto the shores of Greece, but never did.

I saw in my mind’s eye the sleepy child protesting against being lifted from his rest by his frightened parents, nestling in his mother’s arms and starting to fret as water splashed against him. And then the rest. The screams, the shock of the cold water, the eyes squeezed shut, the little mouth calling for his mother in complete terror and answered only with the salty water of the Aegean.

By early morning, it was all over. By an act of pure luck, a photographer at the right place at the right time, Aylan Kurdi escaped the anonymous fate of so many thousands like him, people whose names and stories we’ll never know. The name his parents had thoughtfully picked for him, smiling joyfully at their younger son as they held him for the first time, was now on everyone’s lips.

For those of us who had been following the refugee crisis in Greece, our timelines and inboxes filled with such stories and images of countless small children washed up dead on beaches, their nappies swollen with sea water, the wave of outrage that Aylan Kurdi’s death brought a tiny glimmer at hope that maybe now the rest of the world would feel the sense of urgency we did. Something had to change, didn’t it? For a little while, this did happen. But it didn’t last. It rarely does.

After a brief period of hand-wringing, Europe went right back to business as usual. They built fences and continued their swing to the right. They shut their doors and hearts. When Greece’s northern border shut, tens of thousands became trapped in Greece, and the flow stopped. In Greece, people who had been through indignity after indignity found themselves squelching through the mud and filth of Idomeni, wondering why Europe was working so hard to keep them out.

Keeping refugees out (or benefit-scrounging migrants, as some have labelled all of them) became such a political flash point that the UK decided to leave the European Union altogether thanks in part to this one point. If those voters only knew the full horror of what these people go through before they even get on those boats, they would change their minds in an instant.

A completely fractured European Union was unable to find a solution to the refugee crisis (helpful hint: safe passage would be a good start, as would reasonably speedy relocation) involved Turkey in their deal and as borders closed and numbers fell, everyone congratulated themselves on a job well done.

I think it’s time we can stop pretending the Europe has achieved anything meaningful when it comes to this crisis. The relocation programme is so slow it might as well not exist. The asylum process has been split into two steps, which rather than streamlining the process, has confused a lot of people who think the first step is the only one they need to complete.

“You’re a journalist? Do you know how long it will take? Is there any news from Europe?” are questions I get asked all the time from the women stuck in Greece trying to reach husbands, fathers and brothers who made the journey to Europe ahead of them. And I have nothing to tell them.

A year on from Aylan Kurdi’s death, people are still coming and they are dying in record numbers. Last week, the Italian coastguard reported its busiest day in years off the Libyan coast when they rescued 6,500 people.

In Greece, mayors on the front line islands have spent the summer making increasingly desperate pleas to the Greek government and Europe to speed up the asylum and relocation processes as their islands continue to see refugee flows, especially after the failed Turkish coup in July.

For the time being, we seem content with doing nothing in the face of a situation that is in my mind one of the most shameful in Europe’s history. The shame we should be feeling is something that doesn’t seem to bother us any more. We’ve grown immune to it. In 20 years’ time, when the pain from the refugee crisis has begun to fade, I don’t know how I will answer my children when they ask me “What did you do about it?”. Few of us do, and even fewer of us are bothered by this fact.

A fickle media and a public suffering from compassion fatigue went in search of the next story. They found Omran Daqneesh and once more hands were wrung. How awful! We must stop all this!

But be honest, we won’t. We’ll click a few links, share a few posts and think that’s enough, just like we did with Aylan Kurdi, and just like we’ll carry on doing, until we decide once and for all that the thousands risking the Mediterranean this year are human beings like you and me, with the same dreams and ambitions, and that they deserve a bit of dignity. Right now, I really don’t know what can make that happen.

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