Witty, moving and full of surprises — diary of the woman who says ‘biscuit‘ 16,000 times every day
23:36 GMT, 25 September 2012
08:45 GMT, 26 September 2012
Can you imagine blurting out swear words and nonsensical phrases involuntarily in public, saying the word ‘biscuit’ 16 times a minute, having physical tics and constantly facing the shock and disapproval of strangers Tourette’s sufferer Jessica Thom, 32, has had to deal with all this and more since she was a child.
Her struggle with this much misunderstood condition forms the focus of a moving, year-long diary, which she shares here.
JANUARY: SAVED BY MY KINDLY CABBIE
My friend Ruth texted to ask if I wanted to join her and some friends for a drink. I really wanted to see her, so I set off by Tube for North London from South London, where I live. The journey was going well until the driver announced my station was closed, so I got off at the next stop.
I approached two members of staff who were standing by the ticket barriers and asked one of them for directions. He ignored me, so I asked again, but he turned his back on me.
I explained that I had Tourette’s, that if I was swearing or making unusual movements they were not directed at him and that I just needed information. He looked at me and said: ‘I’m not giving you any f***ing information.’
Shocked, I asked why he had sworn at me, but he just walked away.
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The verbal tics of Jessica Thom's Tourette's means she can say the word 'biscuit' up to 900 times an hou
When I tried to get through the ticket barrier, my pass didn’t work, so I had to go back to the same man and ask him to let me out. He said he would— when I stopped swearing.
I started to cry and said: ‘I can’t stop swearing, I’ve got Tourette’s syndrome.’ But he walked away again and left me in tears, stuck behind the barrier. I felt humiliated. Eventually a woman helped get me out through a side gate. But I didn’t feel like going out any more and couldn’t face getting back on public transport, so decided to take a cab home.
I called Ruth to explain what had happened. She also has Tourette’s, and sadly understood all too well how it felt to be treated this way.
The cab came and as soon as I got in I began to explain my condition to the driver. But he stopped me and said: ‘You’ve got Tourette’s. My best mate of 20 years has Tourette’s, you’re in the right cab.’ And I was. He was brilliant, and by the time I got home I felt much calmer and more cheerful.
There’s not one group or type of person that seems to respond more positively or negatively than any other. All I know is that when I leave my house in the morning, other people will react and their reactions will be mixed.
'I bang my chest with
my fist (it’s as painful as it sounds), jerk my head backwards,
blink and grimace, bend my knees and rise suddenly onto
Tourette’s is a mysterious, genetic
neurological condition. Having it means I make movements and noises I
can’t control — these are called tics and mean I’m rarely quiet or
It’s thought around 300,000 people in Britain have Tourette’s, about four times more men than women. So I really stand out.
well as my many verbal tics — words or phrases that often draw on
things I’m aware of, but not what I’m thinking — there are physical
tics, which can make even simple things difficult, such as turning on a
light switch or trying to withdraw cash from a bank machine with my
Physical tics often make my body contort dramatically. It feels a bit like suddenly being wrenched from the inside or as if someone’s put itching powder in my blood.
I’ve had tics since I was about six. They were much less obvious then, but I used to get upset because I didn’t understand what was happening.
/09/26/article-2208646-12ACF266000005DC-210_634x765.jpg” width=”634″ height=”765″ alt=”Jessica has physical and verbal tics as part of condition, and has struggled with it since she was a child” class=”blkBorder” />
Jessica has physical and verbal tics as part of condition, and has struggled with it since she was a child
FEBRUARY: F-WORD WITH MY NEW BOSS
My new boss heard her first ‘f***’ today. I think she’d had the impression I was one of the 90 per cent of people with Tourette’s who don’t swear. That illusion is now broken.
I’ve just started working for an organisation in South London that runs play projects for children. My role is a mixture of fundraising and development.
I’ve worked with children for years and you might wonder how anyone who swears involuntarily can possibly work with children.
The key issue with all swearing is the intention behind it. When I tic ‘f***’ it has no more meaning than when I tic ‘biscuit’.
(One of my most enduring verbal tics is the word ‘biscuit’. For the record, I’m indifferent to biscuits.)
There are people who would argue that exposing children to bad language is not acceptable. But I reckon children who are old enough to recognise a swear word are also old enough to understand that I’ve not chosen to swear, and that it isn’t OK for them to do it.
MARCH: TEARS ON THE TUBE
Another unpleasant experience on the London Underground.
While I was waiting on a platform — I suppose I must have been talking or ticcing, though I don’t know exactly what I was doing — an elderly woman walked past with some friends.
She looked at me with disgust and said: ‘Eurgh, we have to put up with this, do we’
I said: ‘That’s not very friendly.’
She replied: ‘It wasn’t meant to be.’
I asked why she was being deliberately nasty, but she ignored me and walked away.
I felt desperately alone and sad. I got on the next Tube and fought back tears. I’ve never cried on public transport before, but the woman’s comment really hurt. She could carry on with her day and never be disturbed by my tics again. I don’t have that choice.
APRIL: FINGERS ON BUZZERS PLEASE!
Fed up with my verbal tics, I decided to look back over my favourites. Here are some I’m particularly fond of:
‘Capital letters talk to themselves at night.’
‘Stationary action now.’
‘Fingers on buzzards.’
‘Don’t make me ladder your tights.’
‘Hands up, Action Man.’
‘I’m sorry for crashing my life into yours.’
Tourette’s changes over time, so my tics don’t stay constant. This month I’ve re-entered a head-banging phase.
Not the music-related throwing-your-hair-about type, but the fist-to-head variety. Unfortunately, it doesn’t stop when I’m holding something.
Already today I’ve hit my forehead with a phone, a carton of apple juice, a set of keys, a toilet roll dispenser and a strawberry.
In 1989 John Davidson became a household name from a BBC documentary as people watched his involuntary outbursts and physical tics brought on by Tourette's
MAY: WILL A MAN EVER FIND ME SEXY
Tourette's means I’m not very good at keeping secrets — I blurt things out when I tic — and it’s my sister’s fianc’s birthday soon.
Russell loves Star Wars and I bought him an expensive themed cap about two months ago. But I keep ticcing: ‘I’ve bought you a . . .’ Until now I’ve been able to stop myself saying more.
Today, I completed the sentence with ‘ . . . hat.’ Fortunately I also ticced: ‘I’ve bought you a helicopter.’ ‘I’ve bought you a standing ovation.’ And ‘I’ve bought you an ovarian cyst.’ Hopefully he’ll have no idea which one’s the real gift . . .
More seriously, after a post-wedding party this month, I admitted to a friend that I sometimes feel lonely.
Though I don’t believe I’m single because I have Tourette’s, I do think a man might need considerable vision to find a woman sexy who shouts ‘biscuit’ and thumps herself a lot.
Perhaps I’m just Bridget Jones with swearing and I’ll have a Hollywood ending to look forward to.
Perhaps I won’t. Either way, I’m lucky to have the friends I’ve got.
JUNE: MY 11-YEAR-OLD GOOD SAMARITAN
An increasing number of leg tics mean I’m walking in ways that look increasingly dramatic.
I frequently find myself dropping to the floor. Surprisingly, very few who see this ask if I’m OK. I suspect this is because I don’t look fazed by it or because the screeching noises and jerky movements scare people off.
None of this put off a boy in the supermarket this afternoon, though. About 11, he didn’t think twice about coming to help when I dropped down in the aisle near him. Later I saw him leave with his parents, and told them how kind he’d been.
JULY: DAD REALLY TAKES THE BISCUIT
My dad's obviously used to our conversations being peppered with tics, including lots of swearing, which he never seems to mind.
Our recent phone conversation was no exception, until halfway through I described something as being ‘f***ing awful’. He knew this wasn’t a tic and told me to mind my language.
I laughed. Anyone who thinks having Tourette’s means you can get away with swearing hasn’t met my dad.
However, swearing isn’t my major verbal tic. My sister’s fianc Russell did a little experiment, the conclusion of which is that I’m running at 16 bpm (‘biscuits’ per minute). If this is a consistent rate, it means I tic ‘biscuit’ 960 times an hour, or more than 16,000 times a day while I’m awake. This means that over the past year I’ve said biscuit nearly six million times. That’s a lot of biscuits.
AUGUST: LAUGHING GAS ISN’T FUNNY
I make a long-awaited trip to the special care dentistry team at my local hospital because my tics have become too difficult for my dentist to manage.
The team were lovely, and gave me laughing gas to see if it would subdue my tics. Eventually, I started making the loud squawk I often make when I’m going to sleep. But I was still moving about a lot.
Still, they decided to try examining and cleaning my teeth. ‘Who wants a whiskey’ I ticced. The dentist said: ‘I’ll definitely need a glass of wine this evening.’
Then I felt I was going to pass out. So we did the rest of it the old-fashioned way, without gas, and with a friend and the dental team holding me down. The process lasted about an hour and I was relieved when it was over.
Afterwards, the dentist said: ‘We won’t do it that way again.’ I’m guessing he had two glasses of wine that night.
My walking’s been getting steadily worse over the past few months, so I’ve been wondering if using a wheelchair might be a good idea.
The more I think about it, the more confusing it gets. It might make longer journeys much easier. But I don’t want to give in to the tics or become less active.
Big Brother series 7 winner Pete Bennett brought Tourette's syndrome to the attention of a whole new audience in 2006
SEPTEMBER: HAND UP! THIS IS A TIC
While I was having a shower this morning, I slipped into the bath and started doing my dying fish move, an abrupt backwards and forwards movement of my body when I’m horizontal.
There wasn’t much room, so I kept banging my head, arms and legs on the side of the bath.
The shower hurtling water into one ear didn’t help much, and as the water pooled around my face I thought: ‘Uh oh!’
It was distressing and frightening, but eventually I managed to get out. If I’m going to stop myself dying in the bath I need to find a better solution to having a shower. I’ve already made one change.
I’m moving out of the flat that has been my home for four years. I’ve love living here, but in the past six months it’s become increasingly difficult to manage the six flights of stairs because of my leg tics.
I’m not moving far, though. A good thing, as I recently went into the post office and shouted: ‘Hands up!’ Fortunately, I’m a regular customer, so this didn’t result in any panic buttons being pressed.
Getting to know people in the shops and cafes I visit regularly is very important. Being able to post a letter without fear of arrest feels very good indeed.
OCTOBER: MEDIC WHO CALLED ME ‘IT’
I’m recovering from a series of extreme, explosive ticcing episodes that have completely taken over my body. Each lasted half an hour and left me totally exhausted.
I’ve had episodes like this before, but never as many in one day.
A new development is that I’m also finding it hard to speak. I know exactly what I want to say, but it feels as if my tics block the words from forming and all that comes out is a strange, dinosaur-like screech or a jumble of noises.
And I had another new experience this month. A friend came with me to a hospital appointment.
When we arrived, we sat in the main waiting area and after a few minutes a member of staff came and said to him: ‘Shall we put it in the corridor, so she’s nearer her doctor’ This isn’t the first time that I’ve been encouraged to wait out of the way, but I’ve never been called ‘it’ before.
NOVEMBER: PEOPLE CAN BE SO KIND
People say community is dead, but recently I’ve been moved by the kindness of strangers.
Like millions of others, two friends and I went to a big display to celebrate Guy Fawkes Night.
Because of the ticcing fits, it was with some trepidation.
The crowd was already at least five people deep when we arrived, but when we explained I couldn’t stand very well, people kindly let us through to the front so I could hold a rail. Then, when it finished, a steward let us through the barriers and helped us by asking people to move out of the way.
The cab driver home even refused to accept any money for the fare.
DECEMBER: READY TO FACE NEW YEAR
This time last year I made a resolution to look for ways to acknowledge and celebrate my tics, rather than ignore them and the increasing impact they were having on my life.
I’m proud to say I’ve stuck with it through thick and thin.
Today, some people will see the wheelchair — yes, I picked it up this month — and my fits as signs that things have got worse.
The thing is that they don’t feel worse. Last year, I didn’t have the confidence to talk about Tourette’s without tears as I can now.
There have been plenty of tough times, but with the help of friends, professionals and even strangers, I feel ready for whatever challenges and opportunities the next 12 months may bring.
But it only seems right to give the tics — rude, funny, poetic and surreal, but always a surprise — the last word: ‘The bashing branches of a boring sycamore on a night in December give way to a fairytale universe in January.’
Happy New Year!
Extracted from Welcome To Biscuit Land: A Year In The Life Of Touretteshero by Jessica Thom, to be published by Souvenir Press on October 4 at 12. 2012 Jessica Thom. To order a copy for 10 (including P&P), tel: 0843 382 0000.
VIDEO: Witty Jessica spoke to This Morning in May about her battle with Tourettes