My dear darling, wonderful Paraorchesta.
I love you. Yes, all of you. Every musician, member of staff, production crew, choreographer and dancer. Your collective passion, enthusiasm, talent, endless creativity and boundless commitment to transforming what an orchestra can be, do and who it is for, give me life. If live music is my home then the Paraorchestra are my family.
For me to choose just one word to describe anything is rare. I am verbose. Yet I can find one word to express all the Paraorchestra mean to me; joy. Joy untrammelled, unparalleled, unbound. Just joy. And possibly love. Okay, I can describe Paraorchestra in two words. Joy and love. Both in quantities and depths I’ve never witnessed anywhere else. Love is a radical act and the Paraorchestra are rebellious spirits.
To say they are inclusive is to downplay how open they are in their outlook. Everyone is welcome in the Paraorchestra family. When I am part of a Paraorchestra performance I don’t just feel included, I feel celebrated. There is nowhere else that I, a middle-aged woman who is disabled, working class, neurodivergent and a single parent gets to feel that way. In life or in music.
This love letter covers the multiple times I have seen the Paraorchestra in the two years since I last wrote here, more than are mentioned here. In that time there have been gigs and concerts, surgeries, illnesses, additional disabilities & diagnoses, an almost 2 year fight with the DWP, a pandemic, the growth of my son from boy to man and family deaths that leave me one heartbeat away from being a member of the oldest generation of my family. At 46. My confidence slowly ebbed back in to be stolen again by the trident prongs of epilepsy, cPTSD and a man who treated me badly. Friends who slipped out of sight and ones who reappeared or joined my life to fill it with faith again.
Paraorchestra are one of those friends who reappeared. Whenever I have needed them they just seemed to be there. Like the family I always wanted to belong to. With siblings, niblings and cousins. In whose warm, comforting embrace I can feel safe to be myself. During the really dark days of the pandemic when I felt completely lost and alone they produced Smoosh! which was a carnival of joy. Last June they performed it again, on London’s SouthBank.
June 2023
It was one of the hottest days of the summer, the sort where you sweat from parts of you that you didn’t know existed. The sort of day when pale, former red-headed women who get sunstroke in England really should stay indoors, not be in a tube carriage as hot as the surface of the sun. I was (and remain) wary of travel. Public transport is busy, difficult to use with disabilities and makes me quite anxious. And yet.
I wore a brightly coloured Tatty Devine necklace, emblazoned with the word JOY. People embraced me, drenching me not just with sweat (I was as guilty to be fair) but also love. I was greeted with smiles as bright as the sunshine. There was an air of bemusement from many of the tourists milling along the SouthBank and that sort of London cynicism that I really don’t miss. Knowle had embraced Smoosh!, delighted to have something so colourful, noisy and fun on its doorstep. London is just too knowing I think. And yet.
I danced like no one was watching, knowing everyone was and not caring. I allowed feelings to wash in and out like the tide of the Thames. I cried happy tears. I joined in a little too enthusiastically, forgetting my disabilities for a moment, and fell over. I got up, still smiling, cocooned from the pain by the kindness of strangers (thank you Lloyd Coleman’s Mum) and the music that thundered through every fibre of me. Wind, brass, strings and voices all combining to rework and mash together songs I’ve known and loved for years in a completely bonkers way, with dancers having a pitch battle alongside until music united them. And us. In a carnival of inclusive joy.
In between the two performances of Smoosh! I asked if the SouthBank Centre had a quiet room I could use to escape the crowds and chaos; somewhere to rest. Turns out they didn’t have a dedicated space, but found a solution that allowed for a nap on a sofa in a closed bar. Access is about these things as much as hearing loops and ramps. Rest is as vital as painkillers when you live with chronic pain.
The rest of that summer passed in a seizuretic blur. The epilepsy I’d had a kid came roaring back like a cockroach who refuses to die. It triggered horrendous memories of early childhood; emotions I wasn’t even aware I’d repressed. If I wasn’t waking in the middle of the night with seizures, I was waking with PTSD nightmares. Often times both as one would trigger the other. Then the dissociative seizures kicked in. Mary, Joseph and the wee donkey, they were beyond awful. I was having dozens of episodes of one or another type of seizure or flashback every week. I was too ill to work. Too ill to go out. Too ill to participate in life. It was like being in a personal pandemic. My world shrank and I shrank with it.
I was in an unhealthy relationship which contributed to the shrinking. Just like the boiling frog I couldn’t see or feel what was happening to me. The dissociative seizures began when I was with him, at his, and stopped as soon as he left me. I’ve not had a single one since. Not a one. It’s not as if the epileptic seizures or PTSD went away, those are illnesses I continue to live with. Without behaviours that we could call unkind if we were being charitable, and abusive if we were not, my brain was able to free itself from the dissociative prison it had built. I continue to experience epileptic seizures, mostly at night, mostly when I am tired or unwell, and regularly, but with nowhere near the frequency. I am stable on a dose of medication that is giving me better epilepsy control. Things look and feel brighter than they did. I hadn’t been able to see the tunnel. let alone the light. It may be a long way away, but hope is powerful medicine.
I am thankful for friends and my therapist for helping me begin to heal and move away from the feelings of inadequacy and shame that far too many women (more than you realise) experience. Music has played its part too, of course it has, it was my first love after all.
November 2023
After five years of closure for refurbishment, Bristol Beacon was reopening. I also owe them a love letter, they have enriched and changed my life. Maybe I’ll write that one someday.
Paraorchestra had the honour and commission for the opening night gala. I was invited to be there. To be sat down to see the Paraorchestra perform when so much of what they do is about NOT playing to a room of people all looking in one direction at a stage, it couldn’t help feel strange. Then the music made the floor vibrate and the arms of my chair shake and I thought, bloody yes, if they are to be performing in a conventional way, they will refuse to play conventional music! It was loud. It was bombastic. I loved it.
I felt so showered with love that day. From the Beacon staff as well as the Paraorchestra. None of you knew what I’d been going through, or how ill I was, but you all contributed to building a network of support that helped me feel safe enough to be there. From Sarah’s hug, through Duncan’s tour and Abi’s kindness, to the discovery that I was a little piece of Bristol’s musical history, forever captured in print as one of the images used on the programme notes for that opening night gala. Me. A disabled woman using a mobility aid! It was surreal. Being on billboards around the City had been thrilling enough, then you went and put me on the programme notes and projected me onto the front of the building, along with the dozens of others who took part in the campaign. I mean. I felt really cherished. It was the first time I’d gone out in months. It was an important, if tentative, first step back out into the world.
February 2024
Confidence is a muscle, it can be stretched, overstretched, damaged and even broken. It can also be rescued with the right rehabilitation. You know who appeared as my physio at this point right? Yep, those Paraorchestra scamps again.
Travelling for gigs is something I used to do at the drop of a hat. Very late night coach journeys were not unheard of. Then came a pandemic. Then came progression of disability and illness. Then came epilepsy, PTSD and him. I’d not been further than two miles away from home since August 2023, I’d not been anywhere NEW since December 2022. I had stuck to the familiar and the close. At quiet times, with plenty of support and yet I still experienced panic attacks. It was a big ask of myself then to go to Plymouth, a place I have never been, to see Paraorchestra. And yet.
The Nature of Why was one of the first times I saw the Paraorchestra, it was the night before my birthday, I got to dance onstage at the Bristol Old Vic. I have wonderful memories of that night. And of the following year, when on my birthday eve again I danced, this time at the Millennium Centre in Cardiff.
What do you get when you add an interview with theoretical physicist Richard Feynman to an orchestra who play while moving, a troupe of dancers and then you ask the audience not to stay still? You get The Nature of Why of course! It is the most joyous, interactive, brilliant thing I think I’ve ever been part of. No one is left out, everyone is included. There are all sorts of sounds coming at you in multiple directions. One moment you are stood next to Victoria, soprano supreme, the next Harriet’s percussion is wheeled into the middle of the throng and she is lifted in the air like an arabesque ballerina, whilst she still plays, the next Dom is guitar solo’ing as if he’s on the main stage at Glastonbury, the next the dancers and musicians build a sort of human pyramid around you so that you become part of their living sculpture, the next Guy is dancing plafully in his wheelchair, still playing his horn and on it goes until at the end everyone is invited to dance together in a shared expereince of human connection through music and movement. Immersive doesn’t begin to cover it. There was a beautiful and moving moment that will stay with me forever. One of the dancers crawled underneath Boudica (my walker, named as she is my chariot), looked up at me and beamed a smile more beautific than I’ve ever seen. That dancer made me, made my mobility aid, a part of the performance. She could have moved away from Boudica, that she chose not to, chose to include every part of me, to embrace, with love, the thing that has helped give me freedom of movement, meant everything. I felt not just seen but celebrated for the person I am. All of me included and equal. I couldn’t help but smile back and take hold of her hand. We became united, almost as one, me, the dancer and Boudica. I’m weeping tears of joy remembering it now.
I had so much support and help that weekend, practically and emotionally. Without every person who assisted I would not have been able to be there to experience something so powerful. It takes a village to raise a child and it takes a society to care and include.
Becomming more visibly disabled in an abelist world hasn’t been easy. Knowing the Paraorchestra exist to champion, celebrate and include disabled musicians, dancers, staff and audiences makes it easier to not feel self conscious, embarrassed or ashamed to take up space. Metaphorically and physically. For that alone I love them. And yet. There is the music, always the music. Wonderfully creative music that pushes at the boudaries of what classical music can be.
Thank you, words that have always felt inadequate to descibe gratitude, Paraorchestra for everything. I love you.
All my love, always
Emma
emmachampionsite 