It’s a strange place to be, to not be able to find words when words are what you making your living from. But I’ve been trying for over a month now to find the words to describe what I’m feeling, or how it feels to be raising a child with a rare and fatal condition. But the words won’t come and I feel like a minnow in a very big, very black sea, opening and closing my mouth in the darkness and unable to get a single sound out.
It was my wedding anniversary the day we were in hospital for Hermes’ six month follow up with his consultant in the UK, because Duchenne has no sense of timing. As the appointment started, the physiotherapist asked us if we’d noticed any decline in our child. No, my husband and I both answered. “He’s been doing great!”
But when the assessment started, sitting in the frame of the physiotherapist’s room, I could tell that this time around it was a lot harder for him. I became quiet. We both did. When it was over, I dreaded what was coming as the physiotherapist tallied up his score. Still, I don’t know what it is about hope that lets you fool yourself the way I do sometimes. I had seen with my own eyes that my son hadn’t done as well as the last time, yet I kept thinking “It’ll be fine, this is just a blip!”
Then the verdict. Six points down from the previous visit. I was stunned into a cold, creeping silence. We nodded. We left. I kept thinking “But it’s my wedding anniversary today…” as if that would make any difference. Because I know full well that it doesn’t.
He’s only six. My child is six, and at six he has reached and passed the strongest he’ll ever be in his life, and now he’s slowly rolling downhill. Piece by piece, he will lose more of his mobility. My child is six, and I will not get to sit in that doctor’s office and be told that he is doing better, getting stronger, jumping, running, riding a bicycle. Better and better each time, the way it’s meant to be. Because it just won’t happen.
My child is six, and at six he has two files full of medical documents and I hate the sight of them sometimes.
So far, I’ve done as well as anyone can with dealing with each part of the challenge that is life with Duchenne. But realising that the reality of this condition is now setting in, that our trips to the park are numbered, that when he says “Let’s play catch!” I better get up and do it no matter how tired I am because that too will eventually go, all of this has been a hurdle I just can’t seem to get past.
And that’s when I realised that there are two types of panic. There’s the type while explodes inside you and has an immediate effect. Then there’s the other type that I became acquainted with just over a month ago. The slow, horrible, sticky, stringy panic which wraps its cold tendrils around you and builds in tiny, thin layers. It wheedles its way into your brain and catches you up short, so that when you’re laughing with friends, the unwelcome thought flashes across your brain that your child’s body is falling apart.
This new type of panic settled itself like a spiky little ball in the pit of my stomach and stayed there, so that for around ten days I struggled to eat. For two of those, I lived on just tea and toast, because anything else hurt too much. Weight dropped off me, and I thought of those stupid banner ads that promise the one weird trick that makes your fat melt away. I think I found it, guys! It’s having a sick child that you can’t make better.
I stopped sleeping because my brain decided it didn’t need it any more. When I slept, I saw strange, convoluted dreams of car crashes, sea demons and my children falling like dolls from roller coasters while I watched, screaming.
The theme was always the same: I watched as my children were hurt or frightened, and I couldn’t do anything but see it all unfold.
So why am I writing this? Because when the spiky ball of slow-burning panic settled in my stomach, I felt the need to talk. I wanted to tell everyone, random people on the street, and I wanted to be angry. I wanted to say “Don’t tell me this will be fine, because I know already that it won’t.”
But the words refused to come. And so I smiled and nodded and said that everything was fine even though it wasn’t.
The timing was so bad it was almost poetic. My youngest sister got married a day after the hospital appointment. Why spoil the big day? Why spoil the post-marriage joy? Then summer rolled in. Why spoil everyone’s summer break? Did I really want to message a friend sitting on a beach and say I need to talk, I don’t know what to do right now?
And so I sat on it and let it burn me slowly. I wrote this post to see if I could find the words, because I know words, I love words, and for them to evade me like this in every way makes me feel like I lost a piece of myself.
I feel scared, because until now I thought I was doing well with a positive attitude, but now I don’t know where the line between staying positive or kidding myself lies. Or, even worse, kidding my child. “My life is terrible!” he said during a recent tantrum, and I felt my insides crumble a little. I know it’s not to do with this disease, but one day, it might be. I know that the future is paved with bad appointments like the one we just had. From here onwards comes a slow dismantling of my child’s beautiful little body, and I hate this disease for doing that. I hate it for taking so much from him.
The rows and rows of brightly coloured treats that he can’t have because he’s on steroids and can’t have sugar any more – when did childhood become so full of sugar? And as a lifelong sugar addict, I abruptly lost interest in sweet treats since my child couldn’t have them any more.
I remembered myself on the highway in the back of a friend’s car on a trip to France, eating three cream cakes in a row because I wanted them immediately and couldn’t wait, or pace myself. It was well before I got married or had children, another lifetime. I remember the eclair, the pain au chocolat, some other tart with strawberries and cream.
The passion with which I ate them and the pleasure they gave me feel as if they are a scene from a movie I once watched and not a memory from my own life, a time when sweet treats were so normal. Now I scan the pastel rectangles of ice cream flavours looking for sugar-free options and all I see in the swirls of caramel and chocolate chips are the dirty trick that life played on me. It just doesn’t taste good any more.
And I panic, because I wish I had someone to blame, something to shake on sleepless nights and say “You’re not taking him! He’s mine! I knew his soul before he even came to me, I saw him in my dreams before he even existed! I heard his heart before anyone else did. Stay away from my child, he is mine!”
I know that Duchenne isn’t the end of the world. I know someone somewhere wishes desperately that they were in my shoes. And six weeks on, I am starting to feel better. I’m eating more, though sleep sometimes still won’t come. But I know that that will eventually get better as well and build me up until I’m ready for the next hurdle.
I won’t stop, because I can’t stop. I will keep on being positive, because the fear that my positivity is denial is just a fear. And perhaps a little bit of denial about the long term is what keeps me from losing it altogether.
Tomorrow is World Duchenne Awareness day. Around the world, we’ll be marking this day to celebrate our children and show them that they are not alone. The road is a long one, and I don’t know where it leads. But I know that this disease is not taking away words from me. I will find a way to not let it. I will find a way to talk.
And it is not getting my child without a fight.
With thanks to Google this year for donating their time to create this 3D mini documentary, which features my son and a snapshot of our daily life. If you’ve always wondered what my pyjamas look like, take a look here.
What Americans in Athens Think About These Elections
American elections are always a global event, but this year, more so than ever. In the birthplace of democracy, elections are nothing new. But there’s one group of residents who will be watching these elections with particular interest. These are the Americans living in Athens, a long-established and vibrant community from across the Atlantic.
Americans have been arriving on these shores in a steady stream for decades, engaging in elaborate word of mouth games to root each other out in the days before social media, and dealing with the consequences of American policies which sometimes breed anti-American sentiments in Greece. They’ve learned to love loukoumades as much as donuts and eat their pumpkin pie savory instead of sweet.
And they’ve left their mark. There’s the private American Community School established in 1946, which currently occupies a sprawling space in Aghia Paraskevi and makes you feel like you’re looking at a school in California rather than Athens. Election fever saw them host their own mock presidential debates among students. Head to Kolonaki, and you’ll find the Hellenic American Union, established in 1957 while in Pagrati, there’s the Athens Centre, running since 1969, where you can enjoy culture, Greek lessons and more.
And there’s also IKEA. Yes, IKEA. I know it’s Swedish, but several Americans I spoke to said they go there when feeling a little homesick, because “IKEA looks the same everywhere!”
The Americans in Athens have been talking, debating, encouraging friends to vote and arranging election parties as they wait for November 8. Now when I speak to them, they find themselves in a quiet period, the eye of the storm so speak, as they prepare for what comes next.
“I feel like I won the lottery!”
Marty Eisenstein is a guitar teacher from Boston who has been living in Athens since 1993 after following his wife here. He’s been teaching music lessons at one of the city’s private schools, Campion, for 23 years now, and has a daughter who just started state university.
Marty is a rare breed because he’s also Jewish and a guy! “There aren’t that many American guys here!” he says with a laugh. He’s hoping Hillary Clinton wins, but “I don’t want to jinx it.”
The difference between how Greeks and Americans view these elections is pretty distinct, according to him. He was in the US a few weeks ago, and says that while in America, people might call Hillary Clinton dishonest, in Greece they call her “a monster, a warmonger. That’s the first thing many Greeks say.”
He doesn’t think much will change to his day to day life, since he’s not had much hostility anyway. He does remember one moment of anti American sentiment so sudden and so strong that it made him cry. “The lowest moment in my 23 years was during the bombing of Serbia. My local bakery owner turned to me and said ‘We’re not the same, Greeks and Americans.’”
Whatever happens, he’ll still be here, teaching guitar the next day. “I lived in Israel for a few years and I think Greece appeals to that Mediterranean gene I have. In that sense I like it here, that’s what’s kept me here I think. I love the place in a lot of ways.
“If you think what Greeks have been through economically and politically, anywhere else, people would have taken guns on the streets already. It doesn’t happen in Greece. To me that’s an amazing thing. and now that my daughter is going to university for free, as an American I feel I won the lottery!”
“Trump? He’s a faflatas!”
Stacey Harris-Papagioanou moved from Chicago to Greece in 1985 and divides her time between the glamorous island of Mykonos and Athens. Both sides of her family as Mykonian, which is why she can still afford to live on an island the rest of us can only dream about.
“The summer romance with my ex was the catalyst for moving here, but my real love was Greece.” she says.
She has two children, and has always cast her vote as an absentee. The moment she realized how important this was was during the Gore-Bush elections of 2000. “That election was so close. So not only did I make sure I was always registered to vote, but I made sure all my friends were too.”
Stacey is a very active member of Democrats Abroad, and when we speak, she’s just spent the week calling everyone to make sure they are ready to vote.
There is a big buzz around this particular election. “Everyone is saying vote, whatever you do, go and vote, and a huge percentage have already taken part in early voting and absentee voting.”
She’s only ever experienced anti-American sentiment twice, once during 9/11 when she heard people saying that America had it coming, and now when Greeks ask her “What’s wrong with the people in that country? How can anyone vote for Trump?”
“Trump, there’s a Greek word that describes him perfectly. He’s faflatas (someone who talks a lot but does little)! The difference between the candidates is night and day, and what that means for the rest of us will be night and day.” she says.
In stark contrast to the Greek way of doing things, Stacey says Americans have gone quiet and avoid political discussion as the election nears. “People don’t talk too much so as not to fight, unlike the Greeks that are very passionate and don’t mind telling their opinion to anyone. Americans a bit more reticent in that respect.”
And when she wants to get a flavor of America in Athens, she goes to the usual places one might suspect – the Hard Rock Cafe in Monastiraki, TGI Friday’s in Kolonaki and Applebee’s when it was still open. “Or a coffee with members of the American Women of Greece, of which I’m a member. We can talk about home, or where to find ingredients. We used to make tacos from scratch when I first came here, now you can just buy them in the supermarket! It’s so much easier for the new girls!”
“I was called a spy!”
Christine Jackson has been here since 1972 after coming to Greece with her husband and arrived right in the middle of the Junta. “I was working at Deree college when the polytechneio events took place. I wasn’t there that day but colleagues heard the tanks go in.”
Christine is one of the longest established members of the American community in Athens. “Once I was called a spy! That was during the Cyprus crisis. It was totally unprovoked, I was on the street and my accent must have been wrong and a man called me an American spy.” She has one daughter, who played a caryatid in the Athens 2004 opening ceremony.
After working at the Deree college – “which I discovered wasn’t actually American,” she worked for the next few decades at the Fulbright Commission, advising Greek students who didn’t have scholarships but wanted to study abroad. “It’s an addictive job. I still do it.”
When she wants to get her American fix, she heads to the Athens Centre in Pagrati for cultural events and poetry readings. It’s a place where she’s met and become friends with other Americans in Athens over the years.
A fellow American who she very much admires is the former ambassador to Greece, Brady Kiesling, who resigned after America’s invasion of Iraq in 2003, becoming the first of three US foreign service officers to resign in protest. “That’s such a rare thing for a person to be that principled.” she says.
Christine says she’s very concerned about the outcome of these elections. “I think it will be a tipping point if Trump wins.”
“You can love your country and see that it needs improvements. Greeks certainly do that with their country. Patriotism is hollow if it doesn’t embrace the fact that you want the country that you love to be its best self not its worst self.” she says.
“If you can’t beat them, join them”
Anna Goritsa came to Athens nearly 20 years ago to marry her Greek husband. She has two sons who are going through the Greek public education system. As an event travel consultant, she works with US companies based in Greece, so she’s around other Americans frequently, along with charity work and embassy events which keep her in touch with the community.
This for her is an election that’s turned the status quo on its head. “We are living in trying times and I believe that many of us who live in Greece are insecure on what the outcome will be. I’m very concerned. I believe that many US citizens will not exercise their right to vote during these elections.”
“When I am able to watch the elections with my fellow US citizens here in Greece, regardless of their affiliations, it’s more fun because we know why we are arguing. And yes we try to avoid prickly topics because we respect each other’s opinions. When watching with my Greek friends who have never lived or stepped foot in the US we argue for the sake of arguing.” she says.
As for anti-American sentiment, she’s experienced it a few times, but that changed with Greece’s economic crisis. “Greeks are experiencing anti-Greek sentiments all over Europe and have realized that the citizens of a country should not be judged for the policies of one’s government.”
Despite the downs, there have been some funny moments too. Back in 1997, Anna says she couldn’t find good-quality deodorant in Greece and so would have family and visitors bring stocks of American deodorant for years!
The American community in Athens has been a vibrant and well-established one. They’ve been through a lot together. But, Anna says, it’s very different for the new generation. “They’re not surviving because their potential and options are very limited and many are moving elsewhere. The same challenges exist today as 20 years ago for the newcomers. The number one survival quote when you move ANYWHERE in the world is “if you can’t beat them, join them.”
“I can’t wait till it’s over”
Nick Barnets, a freelance journalist, has been coming to Greece all his life. He spent his summers in a village in Halkidiki but moved to Athens full time in 2014 to strengthen his career as a journalist.
For him, the elections are not just a political event. As a journalist, they affect his livelihood too. His job involves covering international affairs, and that will be affected by whoever is the next president. “Since I cover Greece, and occasionally Cyprus and other parts of Europe, the way the next president’s policies affect these areas will definitely affect what I’ll be reporting on and where for sure.”
Like everyone I spoke too, he’s anxious about these elections and the way they have polarized politics in the US. “I fear regardless of the outcome, there will be now more than ever in recent history, lots of hate and anger. If Donald Trump wins, there will be fear and anger among those who did not vote for him. If Hillary Clinton wins there will be fear and anger among those who did not vote for her.”
He’s finding watching these elections less intense that the last ones, because the last time around he was working as an election researcher for CBS News. This time, he can take a back seat and observe.
“This is the first time I’ve watched a presidential election from across the Atlantic, but it’s not as distant an observance as I thought it would be. Of course I’m also a political junkie, so I’m keeping up with it vigorously despite how upsetting this election has been.”
Anti-American sentiment is not something he’s experienced, especially not since Obama’s presidency and Greece’s recent turmoils which have meant that Germany has taken the place of America for disgruntled Greek sentiment.
Nick says his Greek friends are terrified of Donald Trump becoming president and are disappointed that Hillary Clinton is his main opponent in these elections. “She’s never really been popular here herself. They just can’t believe that we could end up in a world with Donald Trump as President of the world’s most powerful country.”
Perhaps it’s because of his job, perhaps because of the relentless, vitriolic and divisive nature of these elections, but Nick has had his fill. The sooner it’s all over, the better, as far as he’s concerned. “I can’t wait till it’s over, November 8th can’t get here soon enough for me because on the one hand I am always excited for watching the election results but also want this particular election to just be over with so we can move on.”
As one of the new generation of Americans in Athens, Nick doesn’t feel the same pull as the previous generation for getting a piece of America in the city when he’s homesick. That’s partly thanks to social media which keeps him well-connected with Americans friends and family. “But I do feel like I’m right back in the US whenever I’m at The Mall, because despite the stores being different and everybody speaking Greek, it really feels more America than Greece there.”
“I haven’t voted in a while”
I’d easily call Rhea my favourite American in Athens, since she’s the first one I ever met. It was in her bohemian dance studio, festooned with belly dance costumes and off-the wall souvenirs she’d picked up over the decades that I learned two important things: how to dance first with my heart and then with my body, and how to stop taking life so seriously. It was there that I made my first Greek friends with my patchy, faltering Greek. She’s been somewhat of a mother to me, having seen me grow from a new student shrinking into the back of the room, through motherhood, miserable life events and the crisis which meant I couldn’t afford dance classes any more, and she lost nearly all of her students.
She then did something which I felt at the time was the equivalent of a cancer patient cutting all their hair off before it falls out. She stripped her studio bare. Today, all the costumes have been given away, the zebra-skin wall hanging is gone, the swords and coin belts have disappeared. My heart sank the first time I visited her after she carried out this purge.
Rhea arrived in Athens in 1975, and of all the Americans I spoke to, she is the only one who had absolutely no connection to Greece. As a professional belly dancer in California, she had a dream that she was dancing under the Acropolis. So she upped and left, and has been here ever since. Her tales of life in Athens, including the time she chased down an aggressive driver and attacked his car with her dance sword are endless, hilarious and sometimes sad.
Is she voting? “No. I haven’t voted in a while. I’m not going to go to the American Embassy and lose an entire morning or afternoon. I hate to say it… but no actually I don’t hate to say it. I never talk about politics. I’m telling you because you asked me. We’re not going to hell in a hand basket. The world will go on as it is.”
Athens’ 12-foot American
My final American is tall and stoic, clutching a scroll in one hand and staring quietly at the traffic and offices opposite him.
He doesn’t say a word to me, but I don’t mind. You see, he’s a statue. The statue of President Truman to be precise. This rendition of the 33rd American president, a known philhellene, is a lightening rod for anti-American sentiment. Since it was erected in 1963, it’s been rammed with a car, bombed, toppled over and splashed with paint.
On the day I meet him, with hours to go until polls open, Mr Truman is looking pretty good, but a closer inspection reveals little specks of red paint clinging to the bronze and larger splashes generously flecked on the surrounding ground.
In an election campaign where both sides paraded childish statues of each other, at least this statue of an American leader retains some dignity, even when he’s brightly decorated with pink and red paint. It could be worse. He could be a statue of Donald Trump.
A condensed version if this article appears in Greece Is.
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