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Wednesday, August 13, 2014

Word Wonder

"When we tell a story we exercise control, but in such a way as to leave a gap, an opening. It is a version, but never the final one. And perhaps we hope that the silences will be heard by someone else, and the story can continue, can be retold."
Jeannette Winterson, 'Why Be Happy When You Can Be Normal."

I recently listened to a Podcast discussion about' 'Finding Your Voice After Trauma' with Dr Phillips, a psychologist in the United States, where she talked about the power of writing down our stories of trauma and thereby transforming the experience. Trauma defies language because often we have no words for that which is frightening. Our fight or flight system kicks into overdrive and the left hemisphere of the brain is suppressed, leaving us genuinely without the capacity to formulate a narrative for what we are experiencing. Instead, what we are left with are images, flashes of memory and body sensations that become triggers for the flight and fight response even after we are no longer in danger/crisis.

Her remedy for this was to seek out a way to use the nightmares/flashbacks as an opportunity to find the language for the experience. She even suggests going back to that moment that triggers the strong memory and to ask yourself some key questions - like, what do you wish you had said/done at the time. If you can find a way to create a narrative of what occurred you can allow your body to drop the state of hyper arousal. She also suggested that by sharing your story, even if you are only writing it on the page of a journal no one else sees, you are allowing a space to open where someone else is holding the story with you.

On the same Podcasts Tracy Ross, the author of 'The Source of All Things', also states that the telling of the story can help you find a new compassion for yourself as well as providing your self esteem with encouragement because the mere act of writing down our experiences indirectly tells us that we deserve to tell it. That is to say, by becoming the author of our stories we shift from being the victim to being an active voice of experience.

For those of you who have followed this blog through all the ups and downs that are the cancer journey you know that this has been a real obsession of mine. When I stumbled upon Jeannette Wintersons brilliantly articulated story of her traumatic childhood in 'Why Be Happy When You Can Be Normal' I found a key to the door I had been struggling to open. It was the door to the words that had kept me feeling extremely isolated by the traumatic experience I was having as the mother/nurse/carer of little Oscar on his journey to health. And that door and those words were this blog.

This blog has been my opening, my way of finding a narrative for the indescribable experience I was having and a way for you to hold that space for me and to help me find some compassion for myself. All of these things were what I most needed on this journey. They are what held me up. So, by reading these words on this blog it is you who has held me up. Thank you (and again, I arrive at a place where words are not enough to describe my gratitude). I can imagine that it was not always easy to read and definitely not enjoyable at times but you still showed up and shared this space with me. I want you to know that I do not underestimate the power of this and how much I appreciate you taking the time to do so. In the absence of being able to articulate myself as well as I wish I could about how much this has helped me I keep searching in the books of great writers.

Finding compassion for myself is hard for me. I have always been hard on myself. Aren't we all? And no more so than as a mother. No matter how illogical it may sound I always strongly felt at a deep, untouchable level, that Oscar's suffering was my responsibility - and that includes everything (his diagnoses, his treatment, his ongoing well being). He was only 18 months when he was diagnosed so who else was going to be responsible other than me, his mum? As parents there is no greater time of responsibility than those years before our children can speak up for themselves and when they are most dependent on us to help them negotiate an understanding of every little thing that life entails -eating, sleeping, crawling, walking and eventually talking. And that does not even scratch the surface of the emotions they have to navigate and the complexities that come with being a human being and doing in a complex world. Its a tough gig and we all struggle with it and do the best we can.

Throw in a life threatening disease, a horrendous medical protocol of procedures and a horrific number of medicines to administer and the responsibility is incomprehensible. I  got through it in s state of hyped up sensations and instincts. People tell you how brave you are but it doesn't register because you aren't brave, you just have no choice, and because you are so far removed from your own brain that the concept does not have a register in your system anymore. Brave? What is brave? Words start to mean nothing because you can't reach them, they have been shut down by the brain that functions at that primal level where really the only thing you can hear is the sound of your own scream.

When you do find words, you find the way back to yourself and the world. You exist again. And you can change the story.

I had the great fortune to hear Jeannette Winterson talk about this live at the Opera House the other night and I just want to say thank you to her for her deep diving the words for me and to all of you for reading my words in whatever form I could find them here on this blog.

Never underestimate words - read them, write them, seek them out when you need them and celebrate them in whatever way you can - they connect us, they help us walk in each others shoes and they allow us to become the author of our own lives.

Oscar is doing well and he is never lost for words. Such is the joyous confidence of his 5 year old self. On 22 June it was the 4th anniversary of his diagnosis. We had a nice family dinner and let the date slip by in the ordinariness of our daily life. If we try to explain it to Oscar he really doesn't understand. He can't imagine a world where he is sick and in hospital, it makes no sense to him. He has no memory of it at all and shrugs it off as ridiculous.

Auden is also doing well. He remembers more but still has very few words to describe it. He needs me in ways that are unique to his experience and I continue to try to deep dive the words for him when he needs it and in the ways that he needs it. To be honest, he is still working on trusting words I think. He is rightly cautious about everything to do with words and stories. He only wants the truth I think but I have to wait for him to tell me.

I can't speak for Pete and he doesn't use a whole lot of words. Never has. He thinks I use way too many (LOL).

Take care beautiful people. Use kind words when you talk to yourself and each other, hold each others stories with a loving hand, be silent and wait for the right opening, xx