By The Balls

These past couple of weeks have been a bit of a gamechanger for me. First up, I went to an incredible music festival out in deepest darkest Dorset. It's hard to put into words how much music means to me- it's my emotional escape. The place I go when I can't afford to lose my shit realtime, but need to vent and reset before cracking on with business as usual. It probably comes as no surprise that I'm a bit of an oldskool punk girl. Anarchic fuck-the-shitty-system type stuff holds a big chunk of therapeutic value for me, what with being stuck in such a system. Fighting every step of the way for my boy to be afforded the same value and rights as every other person in society. Check out Hard Skin-hands down one of my favourite sets at End of the Road- big swears and even bigger attitude. I'm not just into the shouty shit though- the hippie heart of me resonates with the ethereal, folky, ambient melodies. I'm currently girl-crushing on the inspiration of Laura Gibson- 'Louie' and 'Empire Builder' get me right in the feels every time. Music like that takes me to a different place just for a while- somewhere dancing naked in the forest with flowers in my hair and no cares in the world. Again, massively cathartic in the continual chaos. So yeah, the festival was epic. Every beer you could possibly imagine, and a fair amount of sweet smelling smoke drifting about the place too... 

Secondly, I went to Milan. Yep. You read that right. I came home from End of the Road, pitched my tent in the garden to dry since we packed down in the pissing rain, washed my stuff (muddy as you like due to previously mentioned pissing rain), slept in an actual bed for a night, kissed my kids, and fucked off again. A Swiss friend of mine who has a little girl with the same condition as B messaged a couple of months back to let me know about a European conference that was happening in early September. I googled flights and managed to get an EasyJet bargain, arranged carers to help out while I was away, and I was suddenly off to Italy. Given the opportunity, and the fact the kids had gone back to school by this point, I decided to grab it by the balls and booked a couple of nights in an Airbnb place in central Milano. For those of you unfamiliar with Airbnb, it's sheer genius. It's a website facilitating people with spare beds/rooms/houses to rent them out cheaply for a night or few. A good friend of mine recommended it, and even went as far as to say it would change my life. I had slight reservations about being murdered in some grisly fashion in a country I had culturally and linguistically fuck all idea about, but I have to hand it to him- he was absolutely right. The place I booked was super cheap -  the loft room of a house that had a sort of international hostel feel to it. During my brief time there I met people from Tunisia, Indonesia and other areas of Italy. Dinnering with this melting pot of culture was just incredible, and, if you ever get the chance, I'd thoroughly recommend preparing a meal with someone who speaks an entirely different language. It's a- hilarious (and takes three times as long - holding up veg to ask its name in Italian and charades-ing kitchen activities to make sure you're all on the same cooking page) and b-amazing what you pick up both language wise and culturally. 

On arrival I knew approximately three words in Italian, including pizza, cappuccino and gelato. I managed to follow the masses and get myself from the airport to Milan Central Station, but came a bit unstuck about what to do next. From what I could gather there was a magical place called 'Uscita' which was accessible via every doorway. It took me about five minutes (much to the amusement of my annoyingly intelligent mate- thanks Jase) to figure out that actually meant exit, and there was no mythical omnipresent land of Uscita. A little disappointing, if I'm honest. I also noticed pretty much every single Italian guy, and a fair few women too, staring at me like I'd just stepped off Planet Mars. I was an actual ethnic minority in my own right. Ginger skills level ninja. Pasty, red-haired and blue-eyed I was the polar opposite of the dark-haired bronzed beauties everywhere I looked. And there are some seriously beautiful people in that city. I felt quite the raggedy scruff.  To be fair, it was stupidly sunny so they may have been dazzled by snow blindness from undoubtedly the whitest legs in Milano. Legs that were not, by the way, welcome inside the cathedral- God apparently doesn't like naked knees or shoulders and mine were both on display, it being 34 degrees and all. Wandering the streets of such a different place was inexplicably liberating - I had no agenda, and found cool arts places, castles, and tucked away gelaterias serving the most delicious ice cream you've ever tasted. Stopping in the park to write I got completely soaked by the stealth sprinkler that turned on periodically to keep the grass nice and green. Obviously having no clue about this I was the comedy highlight of the afternoon for the locals looking on. And it's not exactly a problem, getting soaked to the skin in a place whose weather means you're dry in four minutes flat. I also managed to fulfil a bucketlist item- going to a random live music gig in a random city I don't speak the language of. You know, the proper underground local stuff. Finding such a gig in Milan on Thursday night (my one night free) was a pretty difficult task- I'm not sure their live music scene is quite as abundant as our British muso landscape. I did find one though, and after a crazy hour long journey I rocked up at the most hardcore prog-metal gig I've ever been to. Like I said before, the shouty stuff has its place in my preferred music menu, but this was thrash metal on acid and then some. Everyone was wearing black, and not one other person I found spoke a word of English. Trying to have any sort of conversation over the noise was difficult enough; throw in the language/culture barrier and I was royally screwed. But what an experience! 

And then the conference. I got the train out to a town just outside Milan to meet my Swiss friends, who kindly picked me up on their way through. It's almost impossible to explain to people the bond forged by common experience of parenting children with such a rare condition; seeing Nine and David, and then subsequently all the European families, was like coming home. Family, in the truest sense of the word. You breathe a little easier, knowing people around you get it. You see other kids doing the same weird things your kid does and no one bats an eyelid. I sometimes wish we could all live in a dup15q commune somewhere- shut ourselves away from the battleground of typical society and stay safe and understood. My warm fuzzies were somewhat interrupted by the weird vibes of the place we were staying in though. It was an old 16th century monastery, still functioning as such, with rooms for hire and meeting spaces. I explored a little en route to my room and my already-active imagination went into overdrive. I weaved in and out of insanely ornate chapel rooms past multiple bleeding Jesus and weeping Mary statues, and I'll be honest here, it gave me the absolute willies. Every time I heard a noise I jumped out of my skin, and when I turned the lights on they flicked on one-by-one in sequence down the hallway (complete with creepy buzzing noise) like something out of the fucking Conjuring. I genuinely prepared myself for bumping into a soul-tortured 16th century monk on the stairs and planned my exit strategy accordingly. Seriously. The place was literally the next American Horror Story set. Watch out for series six: American Horror Story: Monastery. I was meant to stay there an extra night as my flight left early Monday morning, and the conference finished on Sunday, but there was no chance. I'd already used up my knicker allowance and didn't fancy shitty skidmark pants from staying there alone an extra night. So I rang the airbnb guy and asked nicely for a free bit of floor, which he willingly offered. Phew. 

But all this got me thinking. The conference itself was taxing- emotionally, intellectually and actually I was physically exhausted from the automatic knackeredness which comes when you're immersed in a different culture and language for a while. I picked up some Italian, and depending on who was round the table at dinner, often ended up speaking French as a common ground. It's also weighty knowing that the info you gather then needs to be translated into action back home. Unfortunately for us we're stuck in a system where professionals rarely communicate with each other, and don't hold the opinion of parents in high regard. I'm the centrifugal force that keeps our world together and spinning. That's a big responsibility, and one I didn't ask for. Every day there are clinical decisions to be made, medical procedures to follow, communication to be had.... the list is fairly endless. The psychologist who spoke at the conference talked about our shit being chronic. Acute shit is more easily dealt with- it has a start and an end point. When you live with chronic trauma, it's less defined and much trickier to navigate. Relentless is a good word. The pressure is relentless. 

So how, in the face of continual chaos, do you survive? When you're giving everything, all the time, how do you keep pulling that superhuman strength out of the bag. I think over these past few weeks I may have gone some way to cracking that question. You want to know the secret? Grabbing life by the bollocks. That's my answer. Literally sucking the marrow out of every good moment, however small, and using that to propel you through the crap. If our focus remains solely on the trouble, we drown. No doubt about it. No human is cut out for this. But life, however hard, and however mad, always has shiny bits to offer. Music. Ice-cream. People connections. The smell of fresh-cut grass. Sea swimming. Laughing til your belly hurts. Those are some of mine. And the shiny bits, when we focus on them, remind us that in whatever messy format, life is always beautiful. Now please hear me - I'm not downplaying the crap stuff and offering a glib platitude of 'always look on the bright side.' I know pain. I've wrestled with those deep dark soul wrenching questions; the ones that turn life on its head to try and shake out the sense. I've experienced shit I wouldn't wish on my worst enemy. Bright side living isn't about denying that stuff, not at all. You can't avoid crap- it comes to all of us in one format or other. But you can embrace the good bits, however slight and however few and far between, sucking them dry and bottling them up as a rescue remedy for later. Seizing those life moments by the bollocks and making them count. Living extraordinarily in the daily grind which so often threatens to crush us to powder. Off beat, soul stretching life. Do something that scares you- I guarantee you'll remember it. Do something nice for someone just because. Say what you think. Be authentic. This is all we have. Being bogged down by what other people think, or living reservedly, or spotlighting the shit- they're all recipes for treading water. But living adventurously on every level? Unapologetically gripping life by the bollocks and making it count? That right there is bright side living-remembering that even in the shit there is magic, and life is precious. You might still feel like you're treading water, but those shiny moments are the unexpected cruise ship sailing by and hauling you on board for the last night party. 

Life by the bollocks. Do it. 



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