Wednesday, 12 February 2014

Tourettes friends and family weekend

Family & Friends weekend 2013

May 2013 -  The whole family are all helping to put together a holiday weekend for people and families affected by Tourettes.


Back then having only showed or talked about the inner workings of my world with a handful of people. Back then it was to much of a risk, not only was it probable that there would be a melting internally but I was scared and covered in shame. Still at what seemed like the mercy of my physical self and unsure / unaware of why my body reacted the way it did.

As our fellow campers arrived, we watched from our camp. The dodge (our beloved converted camper-van) was placed away from the majority in the corner of the field. This placing of distance was a standard for me and Zippy as partly it meant a place for me to retreat to. A place I could complete my rituals to calm down and not being seen by others but there was a huge surprise to this normality!


The first thing to take note was all the different types of issues faced by people. The second that all these issues had all been thought about as a matter of fact. From how the toilets were cleaned for the obsessive types to how people were given jobs that fitted their behavioural issues.

Everyone was included and thought about, not because they were in the minority but because it was normal in the  overall majority. All accepted with Tourettes, mental health, carer / family member / sibling / father / mother / friend of a person with Tourettes.

The thing that balled me over was the freedom that was there. You had to appreciate it was an odd set up but the freedom to express and be who you are was unrestricted in knowing it was acceptable.

I started to learn and often think back to those few days with great fondness. You could never image how much was learned in those precious few days. Hope no one is offended here as I'm new to this writing blog business but that's  another blog for another time.

So here goes:

You learn that the Tourettes tics are not the person and they come and go. If you were having a conversation with someone who was ticking then you would let the tic go and carry on where you were before the tic. The tics did not take over and get all the focus. The person and the moment kept the focus, so clarity was never lost and the person remained. You also learned that a clean thread of thought could remain and the persons identity was never lost because of the tic distraction.

This thought developed over time with the relationship between a person and their voices, tics or behaviours. It seemed that people with Tourettes or OCD for example had this ability to separate  thier identity from the condition and they would say things like "oh that's my Tourette's , that's the OCD" as if they were two things (a person and a condition sharing a body). Because of this practice it meant less damage to the persons core identity.

 Even more encouraging was the thought that these people were not going to be judged on their conditions or the resulting behaviours by those who new them best. They were never going to be hidden and told the lie that they were purposely, destructive, naughty, outrageous and rude. This struck especially true almost the younger campers. Watching in awe, it was so incredible and encouraging  to see kids growing up with such (although at times frustrating) understanding of themselves and the acceptance of their conditions. Still able to see a future because of the tolerant worlds they were being brought up in.

In contrast I thought of the complications of having the voices inside your brain. Unheard within your head. How this means that only the person experiencing the problem can be the only one able to explain what's being said or sift through what is suggestion, what is lies, what is real, what is appropriate, what is really your true identity  trying to get to the surface and what's going to get you into bother. When something is external for people to see then people are able to help stay in relationship, filter, define, and teach you what to trust and what to label, what to battle through with and what to let go. (Please understand I'm not trying to compare or contrast levels of suffering, I'm just trying to document a journey of thought).

It also started to dawn in me that to be seen was OK. No one ran off or hid themselves when they felt stuff they just generally worked it through around others, publicly. This expression put no shame or embarrassment on anyone as those around never left the person effected. I started to see what acceptance was, even if it was only in this little bubble of a few days, but I learnt it was a goal defiantly worth fighting for.

I learnt as we went on a trip to the local fire station that it was  completely fine for me to not go into certain rooms (claustrophobia) or experience a ride in the fire truck. No one made me feel I had failed because I couldn't do everything. In short at no point did I find myself isolated or left out by my issues from the group. Even if I had been physically left behind by personal choice, somehow everyone just had a knack of keeping that togetherness.

One evening I sat outside in a circle of people. Relaxed, having a glass of wine and listening to the noises and voices of the tics they sounded like an overlapping orchestra of instruments working together  which reacted with pronouncing against each other to produce a symphony. I watched the physical movements and felt for the first time in a long time at home. I remember not even hearing the banging ringing and voices in my own  head (tinnitus) as they seemed to just blend in, as if they joined the outside orchestra complimenting the overall sound.

Later that night someone got the tic of shouting 'Gary Barlow'  which went on for a few hours. I stood in the dark out side listening and (if I may be so bold) knew what that was like (only internally). It was at if someone had a record of one of the episodes in my head and played it out loud. I knew when my voices looped internally and how to have a line of a song stuck  (as if it was  felt  inside just as she sounded outside) repetitive, ongoing, exhausting and everlasting.

The next day was so emotional and at one point started to have a good cry. The camp was coming to an end but I had felt so at home and accepted, even though as back then I still could not vocalise my issues but knew I had been really helped.

The encouragement of hearing externally what I often fight internally was like begin given hope. Seeing people who struggled openly with there physical body's movement but who carried on regardless made me more determined to find my own answers.

If I had not had that encounter with those amazing people and not seen their struggles worked out in family units, public places, and social settings;  I would not have been able to come so far in my own journey.

If you did not hear their grim determination to fight for the acceptance of  Tourettes and other issues in everyday life then you would never have thought it possible to ask the world to be more tolerant. Instead  I would have still thought I must keep changing and hiding myself to be compliant and would still have thought that silence and stiff physical control were the answer. 

 So to all I met that weekend. You are a massive inspiration, you helped change my life for the better. THANK YOU for fighting for the right to be who you are.