I interviewed Raine Geoghegan about how her writing and stage work have been affected by M.E. and Fibromyalgia. Raine, a former actress, dancer, theatre director and choreographer, worked in the West End and London Fringe. She has now moved into writing prose, poetry and teaching short courses in drama and voice work. Raine has an MA in Creative Writing and has been published in Anima; Poetry & Jazz Magazine; Reflections of the South Downs, Mslexia, and Creating Connections, a disability living magazine. Currently Raine is working on a project with a mentor based on her Romany Heritage. She has had M.E. and Fibromyalgia for twenty years.

Leslie: Bearing in mind your wide range of creative interests and your experience of illness, can you give a brief summary, please, of the journey you’re on as a writer and thinker?

Raine: As I gather all the many threads of my creative life – writing, dancing, acting, directing and teaching – I begin to see that all they have all become instrumental in making my life whole and meaningful. Even living with chronic illness has given me a new perspective on how I function and the way in which I use my personal power. It has taught me how to be still, how to listen to my body and bring balance into everyday life. When I first started to write this post I was ill in bed with bronchitis and a high fever. It reminded me of the time in 1996 when I was first diagnosed with M.E. and of the days that I spent in bed, unable to do even the smallest of tasks. I had been offered an unconditional place on the Masters course in Theatre Practice at Middlesex University. As the days, weeks and months rolled past it became clear that I had to let that plan go, in fact all my work fell by the wayside. I was a single parent to two children trying to cope as best as I could, but even that role was compromised. All I could do was to focus on getting through each day and trying to keep my spirits up.

Having been such an active person I couldn’t believe just how much energy it took to take a shower or prepare breakfast: small tasks, but the equivalent of climbing a steep hill. I also found simple things like watching television or talking with someone extremely exhausting. The late John O’ Donohue wrote about chronic illness as a new territory and one that we need to navigate our way through. This was certainly how it felt to me. Thankfully I had always been aware of my spirituality. I followed a simple spiritual practice and this became more important than ever as it felt like I was dying – which in effect I was, dying to the old but not yet knowing what I was birthing. Day after day I would get up, shower and breakfast with the help of my partner then go back to bed. One day I asked myself – what CAN you do? And the answer was – you can breathe, pray, write. I started to keep a journal. The following notes are taken from it.

‘How do we begin to take steps to heal ourselves when we feel at rock bottom?

 We breathe.
We look at what we can do, not what we can’t.
We take one small step, then another.
We invest in our future by planting seeds of hope and courage.
We do it our way and we keep it simple.
We hold the intention of becoming whole and well in our hearts.
We stop trying to control everything instead we learn how to trust our mind, body and soul.
(November 1996)

I also wrote a series of meditations and evocations on the Divine Mother. In June 2016 three of these pieces were published in Ground, an online journal that explores faith.

Meditation on the Mother

     Sophia
     ‘Never has there been a time when I could not show myself to you                                                          for you are all seeing and your gaze penetrates all things.                                                              Your love blazes into every corner and crack
blissfully washing away all pain.’

Writing helped me to connect with my creative spirit but it also became part of a healing process.

During the Masters in 2012-20I5 I was able to feed my experiences of chronic illness into my work and wrote specifically about pain and disability for my dissertation. The following through lines are taken from this.

     ‘White curtains of infinite fatigue/stretch before me/like sail cloth of a boat becalmed/hanging creased and limp. I long for someone to pull them open/to let the light in.’ White Curtains of Infinite Fatigue 2015

Here in The Body Speaks to the Mind I experimented with form and the idea of allowing an exchange between the mind and the body.

‘Remember the signs?/pain – pins pressed against the back of my eyes/pressure in the neck/the brain fizzing as if a foreign entity had collided with it. Remember how my muscles became taut, like string when it is pulled hard?

(Curlymindblog.com – December 2015)      

      I also explored how concrete and synthetic light affects the M.E. sufferer. There is often an acute sensitivity to light, sounds and smell.

‘Imagine a quiet room … somewhere in Ludgate Shopping Centre. / A place to lie down/where limbs, bones rest inside their skin. / She considers going into the store. / Images of glass doors swinging, bright lights, babies crying and musak, / forcing itself into ears, eyes, head. A deep thirst and a yearning / for soft earth, grass, / the healing tones of green.’ Ludgate Shopping Centre, 2014.

      Illness opened a door. It provided me with quiet, solitude and the space to focus on writing poetry, to go deeper into what it was that I needed to express.

‘Poetry begins in solitude.’  John Agard, poet.

      Writing, particularly poetry, feeds and sustains me. I love the process of coming across a seed of an idea, crafting it, then reworking the whole.

I’ve put my plan for a pamphlet on hold. Writing about chronic illness has been a huge challenge. I hope to return to it at some point but for now I am concentrating on a project based on my Romany Roots. I have acquired so much material that at times it feels like a lifetime’s work. I am noticing that the energy around this work is empowering and strengthening. When I read monologues written for my Granny, I sense the strong dynamic in the dialogue. She was a very strong Romany woman and it’s important that I do her and the other family members justice.

Leslie: What set you off exploring your Romany roots? Can you give specific anecdotes and linguistic examples showing what you’ve learned?

Raine: I have been working with a mentor and it was he who suggested that I write about my Romany roots. We talked about the power of writing something that felt authentic and truthful. I was born in South Wales; my father was Welsh, my grandparents Irish/Welsh and my great grandparents Irish. My mother was true Romany, as were her parents and grandparents. My father died when I was nineteen months old. I was brought up by my mother, granny and grandfather. I remember many things about my childhood, in particular the life and soul in the home, the singing and dancing, colours of the flowers that my granny sold. I began writing monologue for my granny. I found that when I read them aloud I felt a power within that ignited my passion for the Romanies. My mentor has challenged me to go deeper into the Romany spirit which feels a lot like the Spanish duende. Lorca writes:

     “The duende, then, is a power, not a work. It is a struggle, not a thought. I have heard an old maestro of the guitar say, ‘The duende is not in the throat; the duende climbs up inside you, from the soles of the feet.’ Meaning this: it is not a question of ability, but of true, living style, of blood, of the most ancient culture, of spontaneous creation.

Theory & Play of the Duende, (Maura)

     There is a Romani phrase, ‘the phuri dhai’, which means the true source of Romany blood. The Roma have withstood cruelty, racism and oppression. They have been forced to alter their way of life in order to fit in with society. One of my poems explores the transition from being on the road in a vado (wagon) to living in a ken (house).

‘She missed the vardo, cooking on the fire and the open tober’.

The Way of the Gypsy.

     Of course even when they were on the road they were often moved on by police.

‘’We ‘ad to ‘old the men back as the gavvers (policemen) started to wreck the site. One of ‘em kicked the kittle off the yog. He shouted. Pack up and get going, you’re not welcome here.’

Keep Movin’

     I’ve been reading Billy the Kid by Michael Ondaatje. It consists of poems, prose, character sketches and monologues all based on the life of Billy the Kid. It is both factual and fictional; a sort of re-imagining of what that time was like in the Wild West. This book has been inspirational as it has given me a template to work from. I am taking one piece at a time. It may be a character sketch of my Great Aunt Tilda or a short piece of prose about a cousin of mine who was hit around the legs when she was waiting for her lunch time meal at school and called a ‘a dirty little flower girl’. I am also writing songs which my husband is composing music to. I am bringing my family back to life, sharing their stories, their culture, their love of the land. I am evoking the Romany spirit, and who knows where it will take me.

Another aspect of this work has been going back to the Romani language that my family used to speak, not all of the time but I do remember certain words. The Romani language is of Indo-Aryan origin and has many spoken dialects, but the root language is ancient Punjabi, or Hindi, based on sacred Sanskrit. There is no universal written Romani language. I have had to research and use online dictionaries which have helped me to find the language that English Romanies would have used. It is a beautiful language with lots of possibilities for writing. Here are some basic Romani words and their meaning:

Mesci – tea. Jel on – move on. Pirroes – feet. Chokkas – shoes. Dikka kie – look at this. Kushtie – very good. Loolladi – flowers. Rakli – woman.

I’m having a lot of fun with these words.

Leslie: In the light of your experience with illness, what do you think about the current balance in our society between action and reflection, doing and being?

Raine: I am glad that you have asked me this question because I feel very strongly that as a society we do not pay enough attention to being in the present moment, to rest, to take time out for relaxation or healing. The following quote is one that I have come back to as it reflects the way I feel.

“The most valuable thing we can do for the psyche, occasionally, is to let it rest, wander, live in the changing light of a room, not try to be or do anything whatever.”

May Sarton, Journal of a Solitude

We are all driven to keep going, to please others, and as someone who has M.E. I have come to value the importance of deep rest and saying no. We don’t have to do it all. There is a certain kind of toxicity in always working and doing something, it’s highly addictive. I love watching the seasons change and how nature teaches us about balance, the time to work, rest or play. I like to bring ritual into my everyday life, to be attentive to detail, to lay out the cups and saucers for tea and to take time to light a candle, to be gentle with myself. I don’t like the way in which the sick and disabled are treated, often excluded from society in general. Look at what’s happening in relation to Disability Benefits right now. Medical assessments are not being carried out effectively or fairly. The disabled and sick are forced into a life of poverty with many of their options being stifled. I also feel that sensitivity is a quality that is undervalued in our society. Sensitive souls are often catalysts for change because they bring something unique to our way of life. They offer us another way of seeing, doing and believing. We need to foster a more balanced approach to life, where we can come together and support each other, whatever our circumstances.

Raine Geoghegan, BA Hons, MA, Dip RWTA.

In next week’s blog, THE HEALING POWER OF CAKES AND STORIES,  Robbie Cheadle describes how her son’s serious illness led to her children’s books combining stories with cake making.

ABOUT LESLIE TATE’S BOOKS:

1. Love’s Register tells the story of romantic love and climate change over four UK generations. Beginning with ‘climate children’ Joe, Mia and Cass and ending with Hereiti’s night sea journey across Oceania, the book’s voices take us through family conflicts in the 1920s, the pressures of the ‘free-love 60s’, open relationships in the feminist 80s/90s and a contemporary late-life love affair. Love’s Register is a family saga and a modern psychological novel that explores the way we live now.
   • A signed copy of Love’s Register is available in pounds sterling here.
   • The paperback in other currencies is available here.                                                 
   • Ebook for Kindle in £s here and in $s here.                                                           
   • For other ebook reading devices here (all currencies). 
2. Heaven’s Rage is a memoir that explores addiction, cross-dressing, bullying and the hidden sides of families, discovering at their core the transformative power of words to rewire the brain and reconnect with life. “A Robin Red breast in a Cage / Puts all Heaven in a Rage” – William Blake. You can read more about/buy Heaven’s Rage here.
3. The Dream Speaks Back, written by Sue Hampton, Cy Henty and Leslie Tate, is a joint autobiography exploring imagination and the adult search for the inner child. The book looks at gender difference, growing up in unusual families and mental health issues. It’s also a very funny portrait of working in the arts, full of crazy characters, their ups and downs, and their stories. You can buy a signed copy of The Dream Speaks Back here