My brain had swollen up and crushed itself

 

MY HEALTH EXPERIENCE: After encephalitis, I had difficulty with walking, talking, reading and writing says MICHELLE GALLEN

IN NOVEMBER 1998, I was 23 years old. Thanks to a photographic memory, I’d sailed through school and college to win my dream job as a copywriter. I was working on Regent Street in London. Our company was doing well – we were about to jet off to Barcelona to celebrate recent profits.

In December, I collapsed at work and was hospitalised. A doctor asked me my name. I only knew my first name. He asked me to count backwards. I couldn’t. He asked me to name the prime minister. I answered Tony Ahern.

The diagnosis was encephalitis – an acute inflammation of the brain. My brain had swollen up and crushed itself, leaving me with diffuse brain damage. In December 1998, I flew home for Christmas. My father collected me at the airport in a wheelchair.

After encephalitis, I had difficulty with walking, talking, reading and writing. I couldn’t understand music. My memory was shot to pieces. I veered between emotional outbursts, daily seizures and exhaustion. I couldn’t make a cup of tea. I had uncontrollable mood swings – from infectious giggles to uncontrollable rages. I hallucinated constantly.

I couldn’t perceive depth – everything looked to me as though it was a shiny poster that I would bump into if I tried to walk forward. Groups of five people or more were a nightmare. I just couldn’t compute the complexity of so many people together. I would literally not be able to recognise family and friends in a crowd.

Encephalitis is a rare illness – there are about 60 cases a year in the UK – one in a million. Nowadays, the internet is full of information on the illness, support, recovery. But in 1999 there was no Wikipedia, YouTube, Twitter or Facebook. It was difficult to find information on encephalitis, and hard to stay in touch with friends using a 56k modem and a dial-up connection.

But even in those early days, I knew the internet could help my damaged brain. It held facts and figures I had lost, stored information I could no longer remember. Without my laptop, I felt damaged and vulnerable. With it, I could scrabble for normalcy. And so my huge debt to technology began.

In January 2000, I moved to Dublin and joined a rehabilitation programme. Independence was not easy. The short walk to work exhausted me so much that I’d crawl under the desk to sleep, then wake up later to do two hours’ work before going home.

But the move to Dublin was a turning point because it was here, for the first time, I got referred for a neuropsychological assessment. This is a series of tests that assess how your brain functions. For the first time I learned where my deficits were: my memory, maths and communication skills. Miraculously, my cognitive skills were untouched. This meant that given the right input – facts, figures – my brain would still make good decisions.

Once I knew where the problems were, I focused on getting better. To improve my memory, I taught myself HTML ( HyperText Markup Language, the predominant markup language for web pages) and Javascript. I coded a series of appalling personal websites (which I hope Google has buried). I used my extremely basic mobile phone to store information I needed – my address, notes on seizures, colleagues’ names.

In January 2001, I made the leap back to “real” work as a technical writer in an office where the boss wasn’t okay with employees taking naps under the desk. I expected to be fired when they found me out. But after a few weeks I realised my memory issues weren’t noticeable in a modern company, with always-on internet access.

Now that I had a career, I worked like a demon to make up for lost time. I set up my own freelance business. There was no holiday pay, no sick pay, and the boss was a bitch. But I loved it.

With things back on track I examined a last barrier – language learning. Frustrated by the lack of online materials for the Irish language, I set up talkirish.com, a social learning network. It’s proved really successful, with more than 9,000 members accessing free and paid-for resources. We’ve won a lot of awards from best education website in Ireland, and the Talk Talk Digital Hero award 2010, to the Hero Innovator Award at Learning Without Frontiers.

Last year, I co-founded shhmooze.com, a speed networking service for professionals who are attending an event or conference. Shhmooze uses location-based services to help people find and connect with useful or interesting strangers. Secretly, it’s a godsend for someone with a brain injury, who struggles to remember faces and names and can’t deal with large crowds. Shhmooze has just launched and was a finalist for a major award at the Mobile World Congress in Barcelona in February this year.

Twelve years on from encephalitis, I still use technology to compensate for my brain injury and to compete and contribute not just locally or nationally but globally every day of my life. I look back on the primitive technologies that I leveraged in 1999 to kick-start my journey back to normality. And I look at what we use today. The pace of change is phenomenal.

Technology saved and changed my life. I believe we can all use it to change and save our country, our world. If we’re hungry enough, if we’re desperate enough, we’ll grab what’s there, and we’ll use it to make things better, to fix things, to help not just ourselves, but the people around us.