Locked-In-Syndrome Man Writes With A Light Beam

Drasko Regul of Croatia is battling with a condition known as Locked-in-syndrome. His wife takes care of him and their four children.

ZAGREB, CROATIA – Once you meet Drasko Regul, you no longer have any right of complaining every day about your life, regardless of the credit crunch. He has it much tougher than you do, yet he is aware that his every day in filled with love, laughter and optimism. This 48-year-old Zagreb man, happily married father of four, survived a brain stroke nine years ago, which left him immobile. His physical state is called the Locked-in-syndrome (LIS). His environment sees the condition as “does not move, does not talk”, Drasko wrote.

Master of the virtual world

I feel neglected at times, this is how important his contacts are and I often find strange men and women in our apartment, introducing themselves as his friends, visiting.

Wife Lidija Regul

After the stroke, he could no longer inhale deeply, could not swallow, he only consumes grind food, he is entirely immobile, cannot talk, cannot control his fluids, which is why his wife has to change him. His body may be defeated, but his mind is sharp.

He launched his website on April 1. You will find it at www.rnda-drnda.org, which includes his haiku poems, photographs, biography, a ling to the “Negovor” association, which he co-founded and chairs, while he acquires new friends over the Internet every day, some of whom often visit him. According to his wife Lidija, a defectologist, he has quite a fan club.

- At first, while he could have only moved his eyes left and right for “yes” and “no”, I was his spokesperson and caretaker, the most important person in his world. He waited for me to come home from work and dedicate myself to him. And then he immerged into the virtual world. How, when I get home, he writes: `I haven`t got the time!`. I feel neglected at times, this is how important his contacts are and I often find strange men and women in our apartment, introducing themselves as his friends, visiting – Lidija complained.

While we were talking, she was holding Drasko`s hand; he smiled and occasionally “said” something gliding a beam of light which is attached to his head across letters on a transparent foil. The same device is connected with a cursor on a screen. Drasko calls his writing “forehead-writing”.

Spirit locked inside his body

- I remembered a photo of Stephen Hawking typing on his keyboard with a rod attached to his forehead and this is how I mastered my PC once again, with the help and incentive of a friend. The culmination was when a friend from USA sent me a gadget which moves the cursor on the screen with head movements. After nine months, I wrote him an e-mail on my virtual keyboard – Drasko wrote.

Three years after his condition, he began writing haiku poetry and became a pen pal with a group of people who had also survived a brain stroke.

- I tried explaining to them what it felt like, being struck by LIS. Seeing how I could not type a lot at the time, especially in a foreign language (the group was from the USA), I needed to be brief and summarise – this is what I strived towards in my communication and is looked like haiku! Given that I`m a passionate amateur photographer, I perceive the world around me in scenes. Since I could not express these scenes in photography, paintings or drawings, I had to envision my world with words. I continued describing my mental images, in English at first and turned it into a bilingual trip later on – Drasko wrote.

Life, whatever it looks like

He is preparing to write a book, the title in progress being “Rehabilitation Guide For The Paralysed”, but this will have to wait, because:

- Living life is more important than describing it, whatever it looks like! –

Drasko`s wife Lidija is also planning on writing a book, but only when she manages to find the time along with taking care of four school children – the youngest Gregor was two and a half years old when his father became bed-ridden; twins Juraj and Jan were four years old, while Vedra was a fourth grade pupil. Lidija also works at the Stancic Centre, which is 70 kilometres away from her home. Her book will be called “So Much Spirit In So Little Body”.

She never complains about having it hard and she does not even think about it. She just does what she has to and has no time for depression. You can recognise her is a woman who pauses and watches a father tie his son`s shoelaces, with tears in he eyes. This is something simple and every-day, but clearly something that their youngest son has never had from his dad.

Then again, their children have more of their father than other children, because their father listens to them carefully, corrects their homework and lavishes them in messages of love.