Her is me: a tale of two Trac(e)ys by Julia Jones

In June and July this year I met Tracy and then Tracey.  Both of them are former nurses, both are using art to combat serious illness and both of them – even on the briefest acquaintance -- are life enhancers. I feel better for knowing them.

I met Tracy Brown beside Brightlingsea Hard in Essex as we waited in weak sunshine to witness the re-launch of an oyster smack. The Countess of Wessex (patron of the Sail Training Associations) was expected  so we’d all been moved around to accommodate Media and Security, then were moved once again from behind the receiving line of Dignitaries. Very dignified they are too, in Brightlingsea. They haven’t had a royal visitor to the Hard since Queen Mary in 1932 but as Brightlingsea is the only Cinque Port north of the Thames (to be precise it’s a Limb of Sandwich) it appeared to have experienced no difficulty dusting off the cocked hats, swords and black silk stockings.

The Countess is the one
 not in fancy dress 
Tracy and I had become neighbours through these reshuffles. We were both keen to retain a good view of the proceedings: Tracy because she’d recently passed her City and Guilds photography and wanted to carry on building her portfolio, and I because I’d brought my notebook and was hoping Yachting Monthly might like a few words for its news pages. Those were surface reasons: essentially both of us were determined to respond to the event in the ways that made us happy. We were hungry though and the Countess was delayed. Other people were heading for the fish and chip shop but neither of us wanted to lose our good position, perched on the edge of the slipway, directly facing the receiving line.  It’s a measure of the friendliness of the day that Tracy’s other neighbour, Michelle, who had been bolder in her quest for chips, unhesitatingly shared her portion with us. If you ever read this Michelle, thank you. Tracy and I didn’t talk much: she was snapping, I was scribbling but we arranged to keep in touch afterwards via Facebook. 

I’m so glad that we have. Tracy’s photos of that day were outstanding (in my eyes) and, by reading her posts from many other occasions since, I can sense some of the energy and the joie de vivre with which she is battling breast cancer.  And if you consider that the “battling” word has become somewhat overused, I can only insist that’s the right one for Tracy.  She’s a former hospice nurse, determinedly living the message “I am not what happened to me: I am what I choose to become.” She also advises "Live for the moments you can't put into words" -- which her photographs achieve wonderfully.

I haven’t met Tracey Shorthouse in person – only via twitter, email and her volume of poetry I Am Still Me.  Tracey too is a former nurse; her enemy is not cancer but dementia. "Life is being positive. I live with dementia and love my life. I write, walk, take photos, give talks." Two years ago, aged 45, she was diagnosed with early onset Alzheimer’s and a rarer form of dementia called posterior cortical atrophy. This almost came as a relief: it had been so hard knowing there was something wrong in her head but not knowing what it was and sometimes finding it impossible to persuade people, even doctors, to take her seriously. Now Tracey, like Tracy, is determined to make the most of every day. “You have to grab opportunities with both hands as they might not come again.” She wonders whether she feels like this because of her previous experience. “During my nursing career, I used to see patients give up so easily and it really stuck in my mind. When I was diagnosed I didn’t want to be like that.” (The Elder Interview)

Clearly both Trac(e)ys are realists and both are brave and positive women but this blogsite is about words and writing which is why I’m going to commend Tracy Brown’s photos to you, thank her for her companionship on a particularly pleasant day then focus a little longer on Tracey Shorthouse’s poetry. 

In human terms I Am Still Me is an achievement. By the time Tracey was diagnosed she’d forgotten how to use a computer but she’s re-learned that skill and convinced herself that she can re-learn other skills “if I push myself”. Physiologically she may be right: the brain is a marvellous place and even when shrinking under the stifling attack from the tangles of the tau and amyloid (which I imagine as similar to “devil’s snare” from JK Rowling’s Harry Potter and the Philosopher's Stone) I believe it may have the ability to forge new neural pathways where possible. Dementia activists – people like Tracey who “push” themselves -- are often so articulate that cynics accuse them of not having the illness "really".

Initially Tracey tried to write short stories to keep her brain stimulated but that didn’t work. On my tiny research sample of one (reading to Mum) I can see why – the writer (or listener) of a story almost always needs to retain some factual information, which may be a difficulty. In poetry or song, however, precise recall may be less essential and the patterns of rhyme and rhythm provide a supportive structure. Tracey found that she could express her emotions through poetry. 

Many of Tracey's poems in I Am Still Me address her dementia directly and, for me, these are her best.  You could argue (okay I won’t, but one day there’ll be a psycho-linguist who does) that dementia is an illness that very often attacks sequentially, decimating Proper Nouns, nouns (collective, abstract and concrete nouns) until it reaches the pronouns that seem to be the very heart of our identity.  Tracey’s poem “Prison of Thoughts”  is not always rhythmically secure, its rhyme choices are occasionally odd but it deserves to be remembered for ever for a single, defiant half line “Her is me”. The speaker is betrayed, angry, demanding to be released: 

“You promised and made a vow 
But all you have done is imprison her.

Her is me, don’t you hear?
It’s so unfair, this prison of walls 
When you are there and I am here. 
You say it is to prevent my falls. 

That’s why my mother hates me sometimes when I say goodnight and leave her, though I undertake faithfully to return next day and I promise there will be someone there all night to look after her.  It's not good enough. “Her is ME!” she wants to say. How can you leave ME here? “It’s so unfair.”  It is. As her dementia advances into its later stages that desperate battle for ME may represent the self’s battle for survival. One her bad days Mum often loses "I" (the pronoun that is a subject so may have agency) and only the suffering object "me" remains: "me frikened, me no understand". 

Do you remember  those heart-rending, hate-filled monologues in The Hobbit when Smeagol / Gollum realises that the Thief, Bilbo Baggins has stolen his ring, “my precioussssss”, the single thing he treasures, that makes his life both possible and worthwhile, that constitutes his identity. When my mother is at her worst, full of grief and loss and hatred, she is Smeagol, that almost-lost soul in mental darkness, no longer able to conceive of the autonomy of others, only their unfairness, cruelty and trickery. “Her is ME, don’t you hear?”  I sit out of sight, at this point as she often becomes extraordinarily eloquent – all word-finding, pronoun-difficulties gone – and acts out a completely fluent melodrama – which is a phenomenon I confess I cannot understand at all. Perhaps drama, not poetry or even music is her final frontier? I have no thesis to offer.

But Tracey Shorthouse is not like my mum. There’s a saying to cling to in dementia studies “If you’ve met one person with dementia, you’ve met one person with dementia.” It is surely the most various of all illnesses, enmeshed as it is with the intricate patterns of synapses and neural pathways which every individual, even if they are as comparatively youthful as Tracey, have taken a lifetime to develop. Tracey is determined that her poems should not be all about dementia. In the Elder interview she said “The poems aren’t just about dementia though – dementia doesn’t define me, it’s just part of who I am.” Tracey (like Tracy) seems to be constantly reaching out, she gives talks, even when her speech is slurry, she supports the newly diagnosed, she attends meetings, she tweets, she advocates.

Yet there is a sense in which Tracey's dementia (the alien in her brain) may affect the way she writes her poetry, whatever the subject matter. A friend who is a care-worker described people with dementia as "real" and when I asked her what she meant she explained "whether they tell you that you are the best or the worst person they are telling you the truth as they feel it in that moment". Explaining her writing via a tweet Tracey said: “At first my poems were on dementia and then it changed to whatever was in my head. If words were there then I used to write down. No control.” 
I think I can see this sometimes in her rhymes – a word is seized with real zest, rather as if it might otherwise vanish:
“Don’t say sorry or look uncomfortable
I know that I’m full of peace.
There is no way that I am vulnerable
Cause one day I might go to Greece.”

In this poem “Acceptance” the word "Greece" comes with a moment of thrill: the word / the idea is there in Tracey's head, she grabs it and writes it down before can escape. How this would play in the intensely rational, analytical Leavisite lit.crit. sessions of my university past I’d prefer not to think but, once recognised, I found that it gives the poems their true individuality and charm, their reality. 

Nicci Gerrard wrote a lovely article recently about the medicinal effects of art. Both Trac(e)ys are living witnesses to the truth of this -- and that's good for the rest of us as well. 


Bill Kirton said…
I know this isn't your intention, Julia, but your posts are building a valuable addition to resources on the realities of dementia, from the awful pain of both sufferers and carers to the admirable positivity embraced by your Trac(e)ys. It's the apparent simplicity of their responses that's so powerful: 'Her is me' is worth paragraphs of explication. And your anticipation of the psycho-linguist's argument on the progressive loss of Proper Nouns, then the all-important personal pronouns is inspired. The co-existence of a 'Her' and a 'Me' is frustrating enough; take away the possibility of articulating it and the prospect is hellish. Thanks for teaching me yet more, not only about dementia but also about being and/or becoming who we are.
julia jones said…
Thank you Bill. Yes it is, isn't it -- "Her is ME", I mean. I'm still silently seething after reading a letter from a son in Wales who observed a nurse walk up to his mother with dementia (and sepsis) in hospital, pull up her nightie, without a word of introduction or explanation and give her one of those nasty little daily jabs in the stomach that hospitals give anti-thrombosis. His mother screamed. The nurse walked away. That's such an awful example of seeing the body and not the person at all.

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