Europasionaria

Today is Rare Disease Day. I saved the date months ago and thought I absolutely needed to write a post on that day. A relative of mine suffers from one of these diseases. A blogpost is not much. Just a little message in a bottle thrown into the sea hoping it’ll change things. A little. At my level. My way.

This person who I care so much for suffers from a disease with a rather ugly name: Multiple System Atrophy (MSA). A warning before I start explaining what it is: I am not a doctor hence what I will say about the disease might not be totally accurate. The fact that there is so little information about this disease does not help describing it correctly either. Causes are unknown and so is the cure.

How does one find out about this disease? First doctors diagnose Parkison’s disease since MSA symptoms are quite similar at first sight. Patients can have a number of symptoms but usually not all of them at the same time. This person I care so much for does not have tremor, one of the well known symptoms of Parkinson’s disease. It all started by a frog in the throat, a tendency to write really small characters, and balance problems… after seeing several doctors, the diagnosis was made: PARKINSON. Two years later, since the medicine that usually helps control the symptoms of Parkinson’s disease did not work, the diagnosis was revised. It was MSA.

MSA is a neuro-degenerative disease (another ugly name). It damages certain parts of the brain, which progressively deteriorates the ability to move and to speak, amongst other symptoms. Within 5 years of the diagnosis, half of the patients need to use a wheelchair.

But it is a rare disease. This means there is little information available and not much research is done on it. When facing this disease, you feel powerless. You want to help out but you don’t know how. You discover all the flaws of the system. And you don’t know which one should be tackled first. What can I do? A blogpost? A couple of tweets? How frustrating.

I found out that the UK Multiple System Atrophy Trust is quite active. March will be MSA Awareness Month. You can support the movement by adding a little logo to your Facebook and Twitter profile pictures. It’s simple; take a look. Are you going to help me then? I know that since it is a rare disease you are probably not concerned by it so why would you add a badge on your profile pictures? I understand. Today I’ve already thrown a few messages in a bottle into the sea by posting messages on Facebook and Twitter. Nobody relayed the message. You might not be directly affected by the disease but you have read this post until the end. Just a couple more clicks and you’ll get my ever-lasting gratitude. This way please. Thanks.

Like many expats, Brussels was not a choice of love but one of reason. I came here for work. I had tried first to find a job in which I would combine my passions for Europe and for politics in Amsterdam, a city I fell madly in love with at first sight. But there was no job for me there. I tried in Paris too but it also turned out unsuccessful. I didn’t want to work in the Euro-bubble of Brussels because I thought Europe should be everywhere. Being surrounded by people who live and breathe Europe didn’t seem to be the best way to give a push forward to Europe and be its advocate. I wanted to spread the word to the world. I wanted to share my love for Europe with people who wouldn’t have a clear idea of what it consists in. But I also wanted to live from this passion. That’s how I ended up in Brussels. I’ve been here for six years now.

The mess

© Frederic della Faille

At first, Brussels drove me crazy. Nothing worked. The general mess exasperated me. But little by little, I found those little flaws endearing and funny. I like this chaos now because it’s always surprising. When Parisians visit me in my lovely Brussels and I see them getting upset à la parisienne at the malfunctioning of the city, it makes me smile. I tell them then: “welcome to Brussels”, with a big smile on my face, tell them not to be bothered, to relax, and to cheer and enjoy. Brussels is surreal. It’s part of its charm.

A beauty to discover

© Geert Schneider

After a year and a half, I understood I was here to stay. I had explored the city. Even if it didn’t have the stunning beauty of Paris or the simple beauty of Amsterdam, it was beautiful too. Brussels’s beauty is full of flaws and surprises. For who knows how to look, Brussels contains a flock of hidden treasures. For example, on a sunny day, you look up and notice this gorgeous little art nouveau house, which you’ve passed by every day but never paid attention to.

A capital-village

© Marc Delforge

I like the capital-village aspect of Brussels. Human-sized capital, Brussels has the best of both worlds: big enough so as never to be bored but small enough not to feel dehumanised by the anonymity of big cities. When I go out in Brussels, I always meet people I know, but not too many –that would be smothering- just enough to feel warm.

European laboratory

© David Kenny

During a single night in Brussels, I can use the four languages I speak, a delight for language lovers. And being able to make plans on how to save the world around a beer with Greeks, Brits, Spanish, Italians, Poles, and Germans, is one of the most beautiful adventures one can experience. It happens to me every day.

Brussels and I had been living together for three years when one day it stroke me. It was a beautiful day and I told myself that I liked this city more and more. Since then, I often get this feeling. I look up, notice a lovely little detail that I had so far ignored, I take a deep breath of humid air, and tell her: Brussels, every day that goes by I love you more and more.

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I’ve been a long-time fan of Moo mini cards. I have business cards, which my employer gives me. That’s great in a business context. But when I’m having a chat with someone nice in a non-professional context, I just want to give them my personal contact details, not my work email address. So for about two years now I’ve had Moo mini cards, on which I’ve put my Twitter user name, personal email address and blog URL. They are twice as small as normal business cards, can be customised the way you like, include pictures of yours, etc. All cool stuff.

A couple of days ago I ordered a refill. And then, thanks to Mashable, I found out that you can get Moo cards for free thanks to a partnership with Facebook. You might have heard of the new Facebook timeline. Your front page features one of your favourite pictures with a thumbnail of your profile picture on top of it. Moo offers you 50 free business cards with on one side your Facebook timeline cover picture and on the other side, your favourite quote and other contact details. Pretty cool stuff. I’ve ordered it, just because it’s fun and innovative. Check it out quickly if you want to do the same.

Disclaimer: I was not paid by Moo to write this article

22 July 2011. I’m in Brussels. Tweets of Norwegian friends inform me that a bomb has exploded in the centre of Oslo. Another tweet from them later informs me that there’s also been a shooting at the Norwegian Labour party youth conference.  At this stage, we still don’t know what happened exactly. As I watch the news giving more details about the events, I feel a mix of anger and despair. I know this feeling too well.

25 July 1995. I’m in Paris. I hear there have been bombs in the busiest metro station of Paris. My family and I are aghast. My aunt commutes through this station to go to work. She was fine. Since then, seeing armed soldiers in the Parisian metro’s corridors has become usual. But I never got used to it.

11 September 2001. I’m in a car with my father somewhere between Grenoble and Paris. He’s just helped me find an apartment in Grenoble where I’m about to move. It’s around 2pm. We hear on the radio that a plane has crashed in one of the Twin towers in New York. Analysts say that’s when the 21^st century really started, just as WWI was the real beginning of the 20^th century.

11 March 2004. I’m living in Amsterdam in a shared flat with 12 other people. 8 of them are Spanish. I look at their mortified faces as they watch the Spanish national television relate the bomb attacks in trains close to Madrid.

7 July 2005. I’m still in Amsterdam. It’s early. I get out of bed, turn on the TV and soon realise there’s been bomb attacks in the London Tube. My boyfriend is still asleep. One of my best friends lives in London.

We all remember where we were during these events. I always get the same weird confused sensation: a mix of incomprehension, helplessness and pessimism for the future of humanity. I try to avoid anger. Violence begets violence. And violence is never a solution.

Once in a while, someone will say something that’s so self-evidently true, and so unexpected, that you’ll spend the rest of your life working through its implications.

Read in the Guardian

Some of you may have noticed that my blog was offline for 3 weeks. You didn’t? No worries, me neither… at first. Readers noticed it for me. At first I thought it was a tiny server problem, usually solved by my host in no time. Then I realised it was a little more complicated than that.

I receive dozens of emails a day, mostly from websites I registered for ages ago – I’m an information junkie. Sorting all these subscriptions would take forever. I’ve tried at times but it always ends up the same: I give up as I find it impossible to retrieve a username and password I created centuries ago. Seriously, aren’t you tired of having as many usernames and passwords as websites you have subscribed too?

Anyway… I was being my usual self, scanning through the dozens of (spam) emails I receive daily, trying to spot the personal emails I don’t want to miss… and something bad happened. I didn’t spot the multiple reminders to renew my domain name subscription, which were sent by the service provider. On May 31 my subscription was cancelled without my noticing and my blog was therefore inaccessible.

Offline © Michael Coghlan/Flickr

I panicked. I got angry. I felt deprived. Months of hard blogging work taken down in a minute… It was as if bits of my soul had been stolen. I tried to pay for my domain name subscription again but I didn’t even have the right to! I imagined my domain name being bought by a stranger who would then ask me to pay a lot of money to get it back… alright that would probably not happen to my obscure blog. Yet, I felt helpless.

I sent an email, filling up the online form on the website of the domain name provider -whose name I will not mention as I am not fond of revenge blogging. They replied within 48 hours as advertised on their website. However it took almost 2 weeks to have my blog back online, and several panicked reminders I sent to a robot machine in the meantime, all left unanswered, leaving me questioning the future of part of my identity: my blogger name.

All back to normal then? Not really… it seems all the rankings of my blogposts have been messed up – for the non bloggers of this world: the more a blogpost is quoted and shared, the higher it gets in search engine results. So still, a year of hard work seems to have been lost in this unfortunate event. Was this really worth a slight delay in the renewal of a 20-euro yearly subscription? I was wrong in being late to renew my subscription but the consequences of it seem really inhumane to me.

Success is achieved by developing our strengths, not by eliminating our weaknesses.

Last year on May 9, I wrote about the origins of my passion for Europe. I originated it in the story of my family, partly through that of my grandfather -born during World War I- who fought during World War II. In his last speech to the European Parliament in 1995, François Mitterrand said: “A twist of fate had me born during World War I and fight for World War II.”

A twist of fate had it that today is Europe Day and tomorrow the thirtieth anniversary of François Mitterrand‘s election to the Presidency of the French Republic. This man has always reminded me of my grandfather. Although there was little physical resemblance, they shared a certain intellectual elegance. They both were educated men, close to the rural roots of France, and both witnessed the worst atrocities.

A twist of fate had me born during the first European elections by universal suffrage. Two years later, François Mitterrand became “le Président”. He was still President when I was 15. I grew up with him. So much that it was unconceivable for me that another man could be President. Today I’m more interested in European politics than French politics. Still there’s something I’m missing on both scenes. National discourses and European discourses alike lack vision. Where are the charismatic figures à la Mitterrand? Where are the visionaries able to rouse the masses enthusiasm? Who is able today to shift mindsets with a mere speech?

A twist of fate also had the last WWI veteran die a few days ago. The rejection of war, the quest for peace built the European integration. My generation hasn’t lived during wartime. Reminding that we owe the longest period of peace our continent has known to the European construction is not enough to rouse young adults’ enthusiasm for the European project. We need a new vision and visionaries to lift and carry it along. What will be the European project of the 21^st century? Blog out!

I’ve been quite silent on this blog in the past two months… This is because I’ve moved from one commune of Brussels, Etterbeek, to another commune of Brussels, Ixelles. In Paris the town’s districts have numbers; in Brussels they have names. Where it gets complicated is that there is a Brussels commune called Brussels. It’s Brussels, Brussels, the oldest district of the city. It’s tiny. All around it, the communes have different names. I am now a proud inhabitant of Ixelles, Brussels, where you can find some of the most beautiful Art Nouveau buildings.

9 & 11 rue Vilain XIIII © Fonk/Twitter

Finding a place in Brussels is not that difficult … but a move is a BIG DEAL. You’ve got to find boxes, kind friends to carry them, a moving van, a driver, sign all kinds of paper at the bank, cancel your Internet subscription – which took me half an hour over the phone, find a new Internet provider – it took me a month to get the connection active, terminate your current renting agreement, clean up the mess that’s kept on growing in your old place for years, buy furniture, assemble your furniture, tell the various organisations and institutions that still like to send you post mail that you’ve moved, go register at your new commune, etc, etc, etc… as my favourite online cartoon Hyperbole and a Half put it, you kind of feel like that every day for two months: “I did three things yesterday! Now I’m supposed to keep doing things? It’s like the things never end!”

To make a long story short, I’ve been busy preparing my move for a month, and I’ve been Internet-less since then. Tough for a blogger. The good news is: I should finally get the Internet tomorrow. Hurrayyy!