No longer a ‘recovery’ but a ‘reassemblage’

For a few months now, I’ve been contemplating how fitting Recovery is as a title, nearly 4 years on from the project’s initial conception. I always described the project as Recovery: my process of being disassembled and reassembled, slightly askew, particularly for the numerous funding applications I’ve written over the years to secure support for the project.

Similar to the actual artwork, all those years ago none of the artists involved knew what was ahead.  I certainly didn’t know what my process of pulling myself and my life together would be like, nor did the neurosurgeon, nurses, occupational therapist, neuropsychologist, physiotherapists, or my GP.

I now think that Reassembled, Slightly Askew captures main trajectory of the piece more accurately. That titles gives space for the fact that I now have a disability, which I must manage and won’t recover from. ‘Recovery’ is a word that originates from a medical model, and does not acknowledge the reality of disability, particularly a hidden one of an acquired brain injury. There are some aspects of my brain injury I may never ‘recover’ from; this is itself a personal journey that has not been an easy one to acknowledge and own (¡Viva la siesta!). I am, most definitely, reassembled, and most definitely, ‘slightly askew’. The place I was at before Mr. McConnell opened my head is not a place I can ever recover and return to.

This renaming, or clarifying, is timely, as Paul (sonic composer and sound designer) has recently finished the first full draft of the entire piece after months of development and reworking with the artistic team, guidance and feedback from the biomedical advisors, and recording with professional actors in the Sonic Lab at SARC (Queens University). It’s an exciting benchmark which propels us forward towards the 2015 tour.

Neuro-experts in the Sonic Lab (Queens University, Belfast)

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Neuro-experts in the Sonic Lab (Queens University, Belfast)

RS McConnell (Consultant Neurosurgeon) and Colin Williamson (Head Injury Liaison Nurse) from the Royal Victoria Hospital Belfast experience a brief introduction to psychoacoustics (how the brain perceives sound) by Dr Paul Stapleton in the Sonic Lab at Queens. The Sonic Lab has the unique capability of sending sound 360 degrees around the room. Paul led Mr McConnell and Colin through an exercise where they had to pinpoint where the sound was coming from, highlighting the perceptual restrictions we have when locating sound when our eyes are closed.

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Superbowl Sunday, sports & Brain Trauma

Superbowl Sunday was yesterday. The Six Nations Rugby tournament also began this weekend. Micheal Schumacher, former F1 champion race car driver, remains in a coma from a skiing accident in December. Channel 4 is approaching its finale of The Jump, a TV show in honor of the Winter Olympics where celebrities compete in a range of winter sports, including the bobsled which caused one contestant such a bad head injury that she had to pull out of the competition.

Brain injury is everywhere, and not just because I have one. According to brain injury charity, Headway, brain injury is the biggest cause of disability globally.

In her recent NPR article, Sidelined By Brain Injury, Ex-NFL Player Copes With ‘Desperation’, author Melissa Block states, “Hundreds of other NFL players have been diagnosed with far more serious conditions: dementia, ALS, Parkinson’s and severe cognitive decline.” This NY Times article from December 2012, contains images of athletes’ brains and shows how repeated concussions and brain trauma affects the brain tissue.

I had a ‘bad brain day’ the other day. It took me by surprise because I hadn’t had one this bad in a while. It was one of those that cut me and my ambitions back down to size where I woke up nearly more exhausted than when I went to bed the night before, where I couldn’t get started on any activity because I couldn’t figure out (or maintain concentration to figure out) the best way to start, continue, and complete an activity, where I couldn’t find my words and when I did, I couldn’t articulate a train of thought in a linear fashion. The apartment was littered with my half-started, distracted and abandoned good intentions. No amount of scheduling or to-do-listing would pull me out of it. Eventually, I had to surrender my ego  and succumb to the fuzziness. It’s not easy in a world where your worth is silently measured in activity and productivity, and ‘I’m so tired!‘ is proclaimed like a vocational medal rather than the non-negotiable reality of a brain injury survivor’s utter fatigue. Though my initial brain trauma was 5 years ago and I’m tremendously lucky to have made progress, the most exciting of which is the Wellcome Trust Small Arts Award to make a sonic-arts-based artwork that brings audiences inside my head, these bad brain days remind me that I’m not, and may never be, fully ‘recovered’. At best, I am reassembled, slightly askew.

I am far from the only individual living with an acquired brain injury, but in the middle of a fuzzy, bad brain day, looking completely capable from the outside, it certainly doesn’t feel like it.

When a Sonic Artist performs a craniotomy…

…a cabbage is involved.

As the unique quality of binaural microphone technology captures the subtle aspects of sound, a cabbage-as-head can potentially capture the vibrations and internal sounds of the ‘head’ being cut open and operated on (note the health and safety goggles). Paul drilled holes into the sides of the cabbage and placed the binaural microphones into the ‘earholes’:

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Our rudimentary cabbage craniotomy will provide a bank of surgery sounds that Paul can manipulate, based on the script development the team has done to date. This will also be adjusted based on the expert guidance we receive from Mr RS McConnell, my neurosurgeon and member of the biomedical advisory team.

This support and development has been made possible by a Public Engagement Small Arts Award from The Wellcome Trust.

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‘Recovery’ coverage

In chronological order…

 

My soapbox moment at the recent Arts & Disability Forum launch:

“I believe Recovery has tremendous potential in the arts, the health and social care sector, and the opportunities where they overlap. The combination of sonic arts technology, movement, sound and dramatic narrative has resulted in a new genre of performance. Recovery’s story of an individual’s experience of brain injury can be used as a resource for doctors, nurses, and social care professionals to increase their understanding of what their patients may be experiencing. It can also be used as a resource for families and friends of brain injury survivors, as well as those living with brain injuries as a stimulus to discuss their own experiences.

Strategically, Recovery can be linked into the policy and service development work done across Northern Ireland by DHSSPS and its Regional Acquired Brain Injury Group (established June 2010), and the annual Brain Injury Awareness Raising week organized by the individual Health Trusts. It also provides a unique opportunity for assessors on the Disability Living Allowance panels to increase their understanding of brain injury and how a hidden disability affects the individual on a daily basis.

Unfortunately, nearly everyone knows someone (either personally or professionally) who has experienced some sort of brain trauma (stroke, neurological condition affecting the nervous system, brain aneurism, blood clot, brain damage from an accident, brain tumor, etc). No two cases of neurological trauma are exactly the same, some share common symptoms; but all can’t be fully understood by anyone other than the individual experiencing it.

Recovery begins to bridge that gap.”

And the response from Health Minister Poots to my invite to the ADF launch: Image

Not nearly as robust a response as I would like, but a response. A seed planted, perhaps…

‘Recovery’ sells out at Pick N Mix 2012!

What a fantastic weekend of new theatre to be part of! And how fantastic that ‘Recovery’ TOTALLY SOLD OUT! There was a great buzz about it, which leads nicely into its month-long residency around the corner at Arts & Disability Forum‘s Gallery space where it will be from 14 June (launch night 6-8pm) until 11 July (Gallery opening hours: Tues-Fri, 11am-3pm; free admission)

(Behold, biosensory-artist-in-the-role-of-nurse, Jiann who was just amazing!)

Image of nurseAnd some feedback from the 50+ people that came to the show:

“Stunning experience…brilliantly realised.”

“Brilliant. I think every medical/nursing student should listen to something like this so they can really understand what goes on with patients.”

“Unlike anything else I’ve experienced or gone to.”

“I became aware of how many people suffer from brain disease and yet I think of it as rare.”

“Like getting inside, right inside, somebody else’s head.”

“Recovery was a really moving an affecting experience. Great work.”

“My palms were sweating and my heart pumping!”

“I want to know more on her road to recovery.”

“Honest and direct. Hope this show travels!”

“Was that all REAL?”

“A privileged insight into the thoughts and sounds of a ‘very sick girl’.”

“I really liked that this was an individual experience, one person at a time in the hospital room setting.”

“Immersive, troubling, follow-able but challenging, beautifully constructed…”

“Quite relaxing in a strange sort of way…”

“A roller coaster ride of emotions.”

“So well done and I wish you the very best with the show. Curious to know more.”

“Powerful, moving, emotional, informative, funny!”

“It was an intense experience that really immerses you into another world. I loved the fact your senses were heightened further by the fact your eyes are covered and you become totally encompassed in the story. My body definitely responded to what I was hearing.”

“I really liked that I was asked about whether I had experienced anyone close to me having been affected by stroke, etc. It instantly connected me with the piece. Being in the hospital bed and having the nurse really put me in the story instantly.”

“This is a stellar piece of work.”

“Wow…just WOW…”

So what’s next for Recovery? Funding applications.

Pick N Mix was a fantastic opportunity to test out the technology and the dramatic conventions we established in the studio for the first quarter of the story, the ‘being disassembled’ part (courtesy of the ADAI grant). The remaining three-quarters of the story, the ‘reassembled, slightly askew’ part, has been mapped out with the team so we are ready to get back into the studio to explore and produce it.

Another area we’re excited about that we haven’t explored yet with the technology is the paralysis section of my time in the hospital– how can sound and its vibrations be used to re-create my experience of being paralyzed down the left side of my body during those first few weeks post-surgery? We have some ideas….!

ADF logo - no shadow arts council - lotteryAnCE logo 2009