We Are Family

When I last wrote I was just about to lock up the castle and head off to spend a weekend camping in a field at the first Tourettes Family Friendship Festival. I was bursting with excitement and I haven’t been disappointed. In this post I’ll share as many of the magical moments as I can, but it won’t be everything because the weekend was packed with excellence.

I’ll start where I left off yesterday….

The journey was a logistical challenge. Leftwing Idiot, Poppy, Claire, Ruth and I travelled up to Northumberland together by train. Between the five of us we had three tents, seven large bags, and a wheelchair. At times this made things a little tricky, particularly getting off the train at Newcastle. It was full of people heading north for the Bank Holiday weekend and the aisles were packed with bags, buggies and bodies. When we arrived we had a nerve-wracking race against time getting everything off safely before the train continued on its way to Aberdeen.

Mission accomplished we bundled into an extra-large taxi and headed to our rendezvous point – a nearby motel. We sat on the grass outside and relaxed in the sun while we waited to be picked up and driven to the campsite.

Very soon we were on the final leg of our journey. We stopped at a local shop to pick up some essential provisions and some chips for lunch. And then, as the camp came into view, I was overwhelmed with happiness.

The field couldn’t have been in a more gorgeous setting. It was big, sloping and enclosed by a neat hedge. On one side stood an impressive castle, its walls stretching out along the field’s edge. Beyond the walls and encircling the field was a mass of amazing trees including a particularly tall one that seemed almost to defy gravity.

In the centre of the field was the Big Tent, with a constellation of smaller refreshment and activity tents clustered around it. Campers’ tents of every shape, size and colour nestled along the edge of the field.

We chose a spot to set up camp from which we could see across the field to the castle and quickly get to the accessible toilet. While we sat looking across the field it quickly became clear that the castle walls created more than just a picturesque view – our tics bounced off them and reverberated back across the field, Ruth’s in particular sounded like they were echoing for ages.

Before we put up the tents we ate our chips. We were bathed in sun, surrounded by friends and enjoying the sound of tics echoing gently off the old stone. As we set up, lots of people came to help and say hello. It was lovely to see old friends and to meet new people.

People had come to the Festival from all over the country and from as far afield as Essex and Glasgow. Everyone there either had Tourettes or was close to someone who has it. It was an event for all ages – there were babes-in-arms and people who’d been alive and ticcing for many decades. This mix of generations and experiences is lovely and adds to the sense of community.

The programme had been sent out the week before the Festival. The activities on offer were diverse – talks, walks, art, music, a nail bar, a teen tent and lots of space to relax and chat. The whole Festival had been meticulously planned and the thought that had gone into everything was very evident.

There was plenty of hot water for hot drinks and hot water bottles. There was electricity in the Big Tent, floodlights at night, a pristine accessible toilet and even an arrangement with a local leisure centre to use their showers if anyone needed to.

The Big Party took place on Saturday night. At 6pm a coach pulled up and we all climbed aboard. We were taken to a nearby town for a party complete with DJ, buffet, bar, karaoke, raffle and mobile petting zoo!

After a great night out we all bundled back onto the coach. I felt completely content listening lazily to all the tics as we chugged down dark country lanes towards the campsite.

I was tired but happy when we arrived in the field. We headed to our tents and snuggled into our sleeping bags.

The Morning light crept into the tent. I woke early and went to lie outside so as not to disturb Poppy and Ruth who were still both asleep. I sprawled out in the morning sun and watched as the field slowly came to life again. Once everyone was awake we enjoyed a cereal bar and fruit-based breakfast, allowing ourselves to settle slowly into the day. Then, just as we were finishing our tea we heard a blast of sirens as the local fire brigade arrived for the first of the day’s activities.

The Brigade were wonderful, friendly and very happy to let both the kids and adults explore the fire engine, the rescue boat and other equipment they’d brought with them. Ruth wasted no time in donning a uniform while at the same time quizzing the fire fighters on the practical implications of joining the Brigade – would she have to lose her long nails? And would she be able to customise the uniform?

To the delight of all the kids and many of the adults the visit culminated in a demonstration of the hose. You could have a go using the hose yourself or dart around under the spray.

After the collective shower we sat in the sun to dry off and have lunch. Just as we were finishing we heard the microphone crackle into life and someone announcing a walk to a local waterfall. After checking it would be manageable for me in my wheelchair, or more accurately manageable for Leftwing Idiot who’d be doing the pushing, we decided to go along.

The Waterfall wasn’t far. Surprisingly, it was tranquil, even with thirty or so people ticcing merrily away around it. I abandoned my wheelchair and with the help of friends scrambled and wobbled along beside it. The kids found sticks and stones to throw in and the dogs threw themselves in the stream. One of the children showed me how to stretch a reed in between my thumbs to make a sort of whistling noise, something I’d never been able to master before.

I got back in my chair and we moved off in convoy to another beautiful spot nearby. Here there were stepping-stones across a wide part of the stream. I decided to give them a go too so I could have the satisfaction of having made it across. I slid down the bank on my bum and Leftwing Idiot and Claire helped me across. Guess what? I made it without falling in! The same can’t be said for Ruth’s phone, although remarkably it was unscathed by its dip.

Soon after the epic crossing I had a ‘ticcing fit’. Had it started a few minutes earlier I’d probably have got very wet but as it was I was safe on the bank and well supported, and I knew everybody else would understand and be unfazed.

Back at the campsite we sat outside our tent and had some tea. While the others had a quick nap in the afternoon sun I headed off to explore on my own, something I don’t think I could’ve done anywhere else. The soft dry grass meant it didn’t matter if I fell hundreds of times while I walked about. Everybody knew me so my unusual walking wouldn’t alarm them and if I got into trouble and started to fit there were lots of people around who could help. This blissful combination meant I experienced a level of freedom that’s not been possible for a number of years.

After a good wander about I went back to our tent to get ready for the afternoon arts workshop I was to lead in the Big Tent.

The Workshop was brilliant and I enjoyed myself immensely. I donned my costume and along with Poppy, Leftwing Idiot and Claire, helped the children transform themselves into superheroes.

Once everyone had a costume we headed into the field to play games and prepare for our mission. The workshop ended with a superhero parade around the whole field finishing on the stage in the Big Tent. The kids created excellent outfits and as we sat and relaxed outside our tents afterwards it was lovely to look down the field and watch them playing in their brightly coloured clothes.

Photos: Matthew Pountney

After a little break at our tent we headed back down to where everyone else was sitting. We sat in a circle and chatted with lots of other families. The circle kept moving further and further down the field as we chased the last of the evening sun. Soon after it ducked below the horizon the Indian takeaway we’d ordered for dinner arrived.

We sat at one of the many brightly decorated tables in the Big Tent and ate a lot of delicious food, so much so that afterwards all we could manage to do was sprawl outside our tents and chat. After a lovely spell hanging out with the family in the neighbouring tent we headed to bed.

As Ruth and I settled down to sleep our tics sang Gary Barlow’s name at top volume to ‘I’m Gonna Be’ – a well known tune by the Proclaimers. The song had been played over the PA earlier in the evening and that night Gary Barlow’s name bounced of the castle walls thousands of times.

Garry Barlow’ wasn’t the only tic shouted into the night as we fell asleep. Ruth kept calling out ‘Make us a brew, love’ in a strong Rotherham accent to the girl in the next tent. I can’t think of a better sound to go to sleep to, except perhaps the gentle laughter of our friends in nearby tents.

2 responses to We Are Family

  1. Joe Wallace says:

    Best thing I’ve read in a while, it was an amazing weekend and you’ve put it perfectly! Made me smile thinking back, glad I had the chance to meet you and talk about things, get on about certain subjects and nerdy things. It really was one big family. 🙂

  2. catherine says:

    I had a lovely time too, nice to catch up and to see you, I also enjoyed your workshop and I took home with me my "Gerbil Woman" outfit.

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