Living with MND

In celebration of International Women’s day on March 8, I’d like to remember my mother Caroline Dare (1954-2004).

Caroline grew up in the UK and migrated to West Cork with her husband Alan in the early 80s to find a new life and raise her young family. 

Caroline loved working with women, focusing on empowerment and personal development. When she first arrived she held birth-preparation classes and later helped to set up the West Cork and Beara Women’s Network and she worked extensively with Traveller women in Clonakilty. 

In 1995 she went to Beijing for International Women’s Day, as part of the Irish NGO delegation for the United Nations 4th World Conference on Women. While she was there she met and was befriended by a group of Tibetan women from the highlands in China. They made a strong connection, and so in 1999, she went back to China to visit them in their homes for an incredible 50th birthday adventure.

Caroline was so full of life, she never seemed to stop – so it was a huge shock when she was diagnosed with a very aggressive form of Motor Neuron Disease (MND) in 2002 when she was 54.

We discovered this piece of writing after she died. At the end of her life, her ability to speak was reduced to typing on a mini writer that had an electronic voice, and she had lost the power to smile, but discovering this writing gave us a connection to how she was feeling that transcended the wheelchair, the electronic voice and the trappings of a very challenging disease. 

Living with MND by Caroline Dare

Movement is the first freedom. It is our first identity. ‘I am here, I am alive’, we say, exploring the lush walls of the womb with our new fingers. Blinded by darkness we swim into being. Even before we breathe we move. Then the instinct energy overtakes us, births us, breathes us, crawls us, walks us, runs and the whole helter-skelter of movement that teaches us what bodies can do.

Soon we become dancers. Everywhere, in all times, people dance. We dance in every language. Joy, sorrow, hope, fear, attraction, we dance all this and we dance for the dance itself.  For what happens to our spirit when we move our bodies.

These days I watch my friends dancing with amazement. One is a cat on hind legs, face up to the moon, playing with the air; another uses her body to dig space, making deep shapes with her limbs; another floats and sways in contentment, contained in the music like water in a pool; others are fiery and flash with electric energy or burn slow holes in the floor as they move. I watch all this in wonder, seeing dancing for the first time. A movement from inside willing our bodies to express itself.

There was always a part of me that copied the dance. I can see myself furtively borrowing gesture and grace, wanting to make them my own. I remember asking myself, will I be 50 and still copying the dance or will I find my own authentic self and move as me? Now that question has even more resonance. I have to learn to move again in a new, softer way. The movement I have left is certainly mine alone, no one around moves quite like me. Clumsy, shaking and unbalanced, my dance is changing. I have heard of people with Motor Neurone Disease whose dance is reduced to the blink of an eye. That could be me. That could be where I am going. If I think of it as a progression towards stillness rather than paralysis it’s an easier image to hold in my mind. Paralysis brings fear beaming out of my eyes like headlamps while stillness allows me to rest in spaciousness.

I have only recently thought of speech as a kind of movement. Language is the second great freedom. Now that my voice is leaving me, talking seems a magic art, but I will still have language even if I cannot talk. I have always loved words, and they will never leave me, I will never be wordless even if speechless. Breath and sound are movements. The throat is a vagina giving birth to voice. Speech is muscular. Our tongue shapes sounds into words, like pastry-cutters making forms out of formless. My tongue is shrinking, tires easily and can no longer cut, chop and arrange sound so easily or so recognisably.

I watch people talking, conversations are hypnotic. Words flow and fly out of mouths as carelessly and unconsciously as breath. Speech happens. Rivers, waterfalls, tidal waves of words flood the space between people wherever they gather together. I marvel at the effortlessness of this exchange. For me talking is slow and full of effort, words are like rosary beads, felt singly and noticed as they come one at a time. Making sounds that sound like words is real work. So the other space I am heading for is silence. These days I am quieter. But the words are always there, caged like birds, flapping my throat, struggling and hoping more than anything to regain the freedom of speech. 

In the early days of this disease I used to play a game with myself. If I could choose only one would I prefer movement or speech, walking or talking. My mind would change daily as I played one off against the other. The freedom of walking in the mountains versus conversations with my children. Now the game is up. I am facing the loss of both. As things stand stillness and silence is where I’m going. A place of contemplation and inwardness, and I am a beginner there. Up to now my skills have belonged to the outer world where I have travelled and adventured beyond my wildest imaginings. If I have one hope now it is that this journey I am on is taking me somewhere more vast, more mysterious and more awesome than anywhere I have yet known.

Hannah Dare

Hannah Dare co-runs Organico, the café, bakery and health shop in Bantry, West Cork.

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