top of page

ME- PERFECTLY IMPERFECT

In 2015, the story teller faced viral meningoencephalitis and was left with an acquired brain injury. Since then, she has also co-existed with a serious multi-system autoimmune disease, crohns, ulcerative colitis resulting in having an emergency ileostomy, CFS/ME affecting all areas of her body and had a few near death experiences. In spite of all this (or as she puts it, ‘because of all this’), she set up support groups for others with chronic illness to connect, be heard and fell less alone, founded a campaign to raise awareness of invisible disabilities hoping to inform and change perceptions and help service providers and the public consider ways to be more inclusive, designed a co-working space to enable chronically sick and disabled creatives be less isolated, as well as founding a community project with nature in mind to give residents of a council estate the chance to connect with and learn more about nature, plants and wellbeing.

 

Her early experience of having meningitis and encephalitis has featured in the press and on radio, and she regularly speaks at charity member and public events. She holds ecotherapy sessions in hospital whilst an inpatient.

This online collection has been years in the making and marks a significant milestone of achievement for her both practically in terms of limitations brought on by her health and disabilities, as well internal achievements such as letting go of her perception of perfection and expectations of her from society.

 

In offering a snapshot of her experiences and the way she sees the world, she hopes that others facing similar life experiences can feel less alone and 'other', that the public can feel better informed of the realities of what happens when one faces life changing ill health, as well as showing the world the magic that can be revealed when allowing ourselves to breathe in to any given situation, no matter how hard it seems.

 

In her words:

 

"The recent years have shown and taught me so much about myself and the world. I have been trying to work out who I am and much of that is how I can best fit into this world. I have needs as a human: to dream and to achieve, to love and be loved, to laugh and explore, to be a part of something more than the sum of my body, all so vital for our existence. What became very clear to me and has given me the strength to live another day (even though this is a double edged sword as it can also make me feel hopeless when, because of my imitations, I can't be the more inside of me) is that I am MORE, so much more than my disabilities and the practical limitations they and society place on me. 

 

Sure, reality is reality: as a result of the brain injury, crohns and ulcerative colitis and other symptoms, I was barely functioning as a human, let alone as an adult. Achieving anything else for the first 7 years seemed like an impossible dream. I didn't know how to make a cup of tea, let alone articulate my self by creating and curating a collection like this. I couldn't recognise words nor their meaning, let alone write a poem. I wasn't able to hold my body up due to autoimmune fatigue, let alone have the energy to tell my story. And as much as there was much grief and loss involved, there were so many incredible moments of miraculous experiences and beauty. I knew, if I wanted to thrive (in whatever smallest of ways) and not just survive, I would have to embrace that I am perfectly imperfect and be creative in redefining my identity and be my more.

I am more than trying to fit myself into the world. I am more than trying to excuse myself to the world for not being what is expected of me. I am more than being alone and isolated. I am more than not having the same positive life choices others in my demographic do. I am more than not being able to dance til sunrise and hike across mountains. I am more than sitting in a quiet room to ease brain symptoms. I am more than my financial struggles that limit my ability to manage my wellbeing and give myself a healthier living environment. I am more than being judged. I am more than not being considered good enough to date, to be a friend, to be employed. I am more than the fact that I can’t produce the work my heart and mind create. I am more than having to tell my intimate health stories to justify why I need assistance or inclusivity. I am more than being told I ‘don’t look sick’ (even by my doctor a week after I almost died). I am more than being a hospital number and a list of symptoms. More than being identified as a ‘complicated health case’ by medical professionals who don’t have the time to see the human living in the body they are talking at. I am more than tripping over, wearing my gut on the outside (ileostomy) or not able to talk coherently. More than being in physical pain for half the year and in hospital the other half. More than having my body cut, prodded, extracted.

 

I am more than surviving, not thriving.

 

I am more than self expectations of perfection that only served to punish me further in my already punishing circumstances.

I decided early on (in facts a few days after i was released from hospital the first time in 2015) to breathe in to my experience. By doing this I realised I could observe the whole experience, and be curious with the what and the how of what would unfold (even in very traumatic and difficult moments). It felt like an adventure, each time. Sure, a dangerous one many times, but an adventure nonetheless. I was having a hair raising, hold on to the seat of your pants experience just lying in bed or trying to cross the road. I realised that in this mindset, I was able to appreciate every nuanced moment. I felt really human and mortal, whilst at the same time infinite.

 

Over time, I realised I could be more than my disabilities because of (in spite of seems to imply a friction and though a battle has been fought, I'd like to be in harmony with) my disabilities. With continual frustration and what seemed like taking more steps back than forward each time, I found out I couldn’t fit myself into the world - it needed to fit to me. Somehow we had to meet half way.

I found I had questions and needs no one seemed to have answers nor solutions that were accessible (financially and practically), so I came up with these myself. I filled my house with post-it reminders, set myself years long tasks to regain memory, re-learnt to read, cook, dress, even brush my teeth! I sat with the urge (which was a symptom caused by the brain injury) to commit suicide. I braved the world when I couldn't see oncoming traffic coming towards me nor remember the route to my local supermarket. Finding myself alone and isolated, I created a support group for those who faced the same life changing illnesses as me. I was curious with the instinctive methods that I created from some innate knowledge within me that helped me heal and manage crippling pain, how my body knew on a cellular level what to do or make me do to regain functions, as well as fascinated with the impact my experiences had on my identity and idea of purpose as a human (which seems to be my driver) and in the multitude of layers that are in grief and loss.

We are so much more than the limitations we face. I was learning to embrace things as they are without feeling defeated and to not be disabled further by striving for perfection. I finally realised how lucky and successful as a human I was because of how I was facing and embracing the what I was facing. 

I live very in tune with my environment and self. Over the years I started to note the many elements in our environment and self that are invisible and yet are so much more. Things that we ignore. Take for granted. Things of beauty. Things we don’t see because we are too self-involved or too stressed and tired. Things that we diminish to nothingness or grasp at and change for selfish attainment and then discard. Things we judge which aren't even based on our own opinion or known experience of. I began to document them, explore them, study them and engage with them.

As I began to regain some cognitive functioning, I started to write short statements about my experiences that became longer copy and to my surprise, even poetry (it's amazing how being forced by a brain injury to function in minimal ways, new talents develop). The paper bore witness to my experience, the pen became my trusted confidant. In taking photos capturing how I engaged with and felt for my environment, I found a way to have a witness to my feelings and thoughts about my self and the world. In facing long term isolation, I came up with solutions to loneliness caused not by choice and found ways how we can create connection and how we use public spaces as a community.

 

I began to realise that everything I was exploring and experiencing because of the invisible disabilities I was living with, had a common thread: the invisible made visible.

I created this website to share snippets of my work detailing various elements of my experience over the years. My hope is that it will help those facing similar issues and disabilities to feel connected, heard and seen. Perhaps it will help their carers and families understand what they are going through more and maybe help society rethink how it can be more inclusive in the services and products it offers and the attitudes it promotes.

You are more, what is your more?"

 

FEATURED IN

The Express, The Mirror, UK Health Magazine, Camden Magazine, Meningitis Now, UK Health radio and on Radio 2 Somerset.

bottom of page