Christopher May's story

Christopher May from Sussex, England, has talked about his experience of undergoing psychosurgery for Gilles de la Tourette syndrome:

I JUST CAN'T STOP SWEARING
His Own Story By Christopher May

PEOPLE usually cross the road when they see me coming - or they look away and pretend I'm not there.

It's something I've become used to over the years, and my pride has long gone.

Involuntary swearing, screeching, squealing and howling very loudly are just some of the gestures I feel compelled to make, because I suffer from Tourette's syndrome.

It's a neurological disorder that was first reported back in 1825, and then named after a French neurologist Dr George Gilles de la Tourette.

An estimated 29,000 people suffer from it in the UK alone.

It's more common in males and it has no cure.

Tourette's is characterised by tics and these vary in severity - anything from head jerking to more vocal tics like mine.

I also suffer from Obsessive Compulsive Disorder, known as OCD and, as well as the tics, I have compulsions to do things like go in cupboards for a particular length of time, or perhaps stare at the same letter on a page when reading.

At one stage, I had an uncontrollable urge to lift up my eyelid and poke my finger into my eyelid and eventually I damaged my eyesight.

I've also forced my finger up my nose so far, it's ended up bleeding.

Tourette's is hereditary, and I believe I probably inherited it from my grandmother who was diagnosed as having St Vitus Dance, which is similar to Tourette's.

I have to take various drugs to help counteract it's worst effects, ranging from anti-depressants and anti-psychotic tranquillisers, to sleeping pills and a drug to prevent me having fits.

Throughout my childhood, no-one really understood what was wrong with me, and I was just labelled as a disruptive element at school.

My mum didn't know how to handle me, and I left home at the age of 17.

Surgery

It wasn't until I was 19 that my condition was properly diagnosed.

My aunt read an article about Tourette's and posted it to us, as she thought it sounded just like me.

I saw my GP and finally my unusual behaviour was formally recognised.

By now, my condition had worsened to the extent that I needed 24-hour care for over six months to stop me hurting myself as the OCD became stronger.

In 1987, at the age of 21, I was the first person in the UK to undergo brain surgery to try and alleviate the symptoms.

The operation, called a cingulotomy, was performed at the Atkinson Morley Hospital in Wimbledon.

The microsurgery involved destroying a piece of the frontal lobes of my brain.

After a further two months at the National Hospital for Nervous Diseases, I was pleased to discover the surgery had been successful in preventing the urge to poke my eyes at least.

Although the effects of the operation were minimal to begin with, my condition has improved slightly over the years.

I've been married twice, but both were short-lived.

My first marriage to my childhood sweetheart when I was 27, lasted just nine months, although she was very supportive for a while.

Support

The final straw came when she found me in the kitchen in a pool of blood after I had stabbed myself all over with a fork.

I married six months later on the rebound, but the condition led to the break-up of that marriage after six months.

I did hold down a couple of jobs for a short while when I first left school, including an office job with the Inland Revenue.

But my twitching and the strange noises I made caused concern amonst staff and eventually, they contacted my mother because they thought I'd perhaps had been sniffing glue.

It's now impossible for me to work because of the difficulties caused by my condition, and I have to rely on sickness benefit.

I live alone in a flat and spend a great deal of time at a day centre run by the Shoreham and District Mental Health Association.

Indian Head Massage is an alternative therapy that I've found particularly useful to access at the day centre too.

The staff there and my support workers have been fantastic, and are currently helping me to get some sound-proofing for my flat, because I know my constant involuntary screeching and swearing bothers my neighbours.

People don't always understand that it's something I can't control.

I was thrilled to secure a £1600 grant from The Scarman Trust, a charity that helps people bring about a change in their community.

I'm now looking forward to running a local support group helping other sufferers in whatever way I can.

I've learned to live with the unkind remarks and prejudices from those who've so little understanding of the illness.

I hope by telling my story it will increase awareness of this frustrating condition, which really does control my life.

As told to Suzanne Roberts

(From the Weekly News, March 30th 2004)

The interview, with photos, can be seen here and another article can be read here.