• Tourettes Hero and the secret super power

    As 2015 draws to an end Tourettes Hero (you would think) would be on a slow down. Jess Thom has had a non stop year.

    We had an awesome time going to Soho theatre to see Jess and Jess, just one of many shows of BIBL in 2015. Highlights and information can be seen Here. This is well worth a look.

    BIBL

    I’m not sure slow down is in Jess’s vocabulary as 2016 is all set to kick off in epic proportions.

    It is our pleasure to let you know that Jess Thom aka Tourettes Hero will be touring in 2016 with her amazing show Backstage in biscuitland. Here is a link to further information #BIBL TOUR

    In the last month alone Jess has appeared on the Russell Howard Show

    Jess was part of an amazing piece of LIVE TV on BB4 She puts us all to shame with her amazing and regular BLOGS and she has had some conversations with Siri that put my “hey Siri what does the fox say” to shame.

    In amongst all of Jess’s work and extremely busy life she has a unique gift. Jess has been known to say her Tics are her super power, as well as saying biscuit, hedgehog, lamppost, Alan, disco… true as her super power is, I think Jess has another super power that she keeps quiet. I want to out this hidden super power that I hope Jess is aware she has…..

    Violins at the ready……………..

    There have been times on our Tourette journey I have personally struggled. Yes I’m not the one with diagnosed Tourettes and yes I am always absolutely there for my children (sometimes without putting myself first and ending up very poorly with a house full of paramedics and suspected heart attacks and months on steroid’s and a nebuliser) quite often pretending I am fine because my children deserve everything to be perfect all the time.

    Sometimes (OK all the time) I hide the fact that I have PTSD and can’t even fill my car up with petrol, I hide the fact I go into PTSD overload when I even smell smoke or go anywhere near an open fire. Sometimes I hide that I can’t sit still. I have to move pretty much all the time and there is nothing I can do about it. Sometimes I get asked over and over if I have a cold because I sniff and cough a lot….. last week a man turned to me and said “for the love of GOD Hayley will you just go and blow your nose or something”, that is not the first time I have driven a co-worker around the bend. Sometimes people think I go quiet and they have done something to offend me……. Those sometimes are because I stutter and sometimes I can’t talk. At the time I got diagnosed with PTSD I was also told I had selective mutism and a stutter. I don’t like these conditions and I don’t like how it makes me feel being able to see a clear link between what happens to me and the conditions my children have.

    The first rule of PTSD is people with PTSD don’t talk about PTSD. With that in mind my PTSD brain doesn’t like to talk about it’s own brain matters. I have only ever talked about or admitted my (all be it very subtle) tic’s to a select few, it has taken me years to even get to that stage. I can’t stand the thought that I unknowingly afflicted this syndrome on my children. Every time I see them struggle it is like another knife going into me and when I can’t get them the professional help they need it tortures me all the more. This has been the case over the last few months. Any help for them seems to have dried up completely.

    I have used facebook as a springboard for raising awareness and I always ask Spencer if he minds when I put a tic quote on there. I suppose it is a way of being able to spread awareness locally with a hidden aim to finding acceptance for my children as they grow. I don’t want them to feel unable to go out into the world and achieve all they are capable of. My updates backfired on me last week and things became complicated with my family. Tensions that had been bubbling surrounding Tourette Syndrome came to a head and They admitted they were embarrassed and could not understand it or it’s vulgarity. The last few months I have needed support from my family and last week I got the ultimate rejection.

    My stutter has got incredibly bad and to be honest I have felt absolutely done. I have withdrawn socially and have spent an incredible amount of time with headphones in my ears lost in my own little word of music. Then, this morning I have a message from a hero, I have a message from a lady that always seems to pop up when I need someone to pop up, it is like Jess has a built in radar detecting, pinpointing and saying something on the money. Jess had seen a post to a private support group I had made and along with a few other people posting similar themes it had prompted Jess to write THIS an open letter.

    Although I don’t know if things can be repaired with my extended family, I find comfort and peace in the fact that my little family, my tribe is part of a bigger family, a tourettes family. The type of family that knows exactly what you are going through and when you are going through it. The type of family that will give you a hug regardless of how they are feeling or how busy they are. A family that are willing to go above and beyond just to say HI, I CARE!. A family I hope we will always be a part of. A family we all truly fit in to.

    Thank you Jess….. Thank you

     

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