images“I am alive, I can think, and no one has the right to deny me these two realities.” (J.-D. Baby)

Happy Easter.

This morning, I woke up to a bright, wonderful day. The sky is blue, the air is crisp and clear, and somewhere a bit further away, there are birds singing, greeting the day.

The nurses had decided that I should sleep and that they would turn Pádraig at the usual times, at around midnight and again 4am. It was very kind of them and it felt good to be able to stay in bed when they came in. When I got up once they had left (just in case:) I noticed this smell of smoke in the room and thought, well, maybe it’s just in my imagination. When I asked them at 4am, when they came back in, they said “Osterfeuer” , Easter bonfires. Half asleep I thought “as long as those fires are outside all will be ok”.

UnknownThis morning, I finished what the Financial Times called “One of the greatest books of the century”, The Diving-Bell and the Butterfly. I was “written” by Jean-Dominique Bauby, editor of Elle magazine, who in 1995 had a stroke and woke up with a locked-in syndrome: he could hear, see and understand everything that was going on around him, but not communicate – except with the blink of one of his eyes: one blink for ‘yes’, two blinks for ‘no’. He wrote the book in Room 119 of the Naval Hospital, Berck-sur-Mer, convalescent home for the disabled, next to the beach.

Jean-Jacques Beineix made a film about Bauby and showed how he used his left eye to go through what he called the “hit parade of letters”, with the most used letters coming first, selecting them one by one: E S A R I N T U L. The director, Julian Schnabel, won the prize for Best Director at the Cannes Film Festival in 2007 for the film.

Bauby also established, in 1996, a year before his death, the Association for Locked-in Syndrome (ALIS): to collect all the present information about the syndrome, to allow sufferers to communicate better with one another, to create means of breaking the solitude and isolation, an to make them true citizens of the 21st century.’

Since last night, Pádraig is on a half-dose of the anti-seizure medication and much more awake. We’ll go on with this until Wednesday, when the antibiotic will be stopped too. He’ll have an x-ray in the morning and ready to go home in the afternoon, hopefully. – We have been here far too long. But I am sure that, in the end, it will be worth it!

Today was the day of the 30km run before the marathon. I managed to finish, just about… Tired and ready to go to sleep.