conversations about medicine and life

Let there be light: macular degeneration and me

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Renée

Let there be warriors…

There must be those among whom we can sit down and weep and still be regarded as warriors.” Adrienne Rich.

Renee

I was taught to read before I was five by my mother Rose. I read stories, then long books, then joined the library, changed both Rose’s and my books, read both, went out to work at the woollen mill when I was twelve and read my way around libraries wherever I worked. I worked at all sorts of jobs then, when I was forty, began studying for an extra mural BA degree. I began teaching in my forties and at fifty I began writing plays. Since then I have read and written (worked) every day. Now I am 90. I’ve just finished teaching a course on writing memoir, and The Cuba Press has just published my first crime novel, The Wild Card.

Two years ago I was told I had macular degeneration.

This is a desolate and unhappy place to be. Being labelled ‘vision impaired’ doesn’t go anywhere near describing the impact of it on my life. As a reader and a working writer it is the worst thing that has ever happened to me.

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A book launch – and a re-launch

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Grace Carlyle 

“You have a lot left in you,” said the bartender as I left. “I can tell.”

It was a nice parting gift from someone who’d been a stranger an hour or so before. I’m not in the habit of frequenting bars but, needing to fill in a couple of hours before a book launch and accompanying poetry reading, and also needing to sit down, I’d pushed open the door with some trepidation and asked whether I could get a cup of coffee.

“Sure,” came the friendly response. When I requested only one shot of coffee in the Americano he commented that he hadn’t made a one-shot coffee for a while. My explanation about needing to keep my potassium levels low struck a chord with him and we went on to exchange some medical history. He’d had a bad concussion and caffeine was now contraindicated. Like me he loved coffee, however he could only allow himself one cup a week. I was fortunate in being allowed one cup a day, but rarely had ‘real’ coffee as I believed it to be higher in potassium. My restrictions resulted from kidney impairment.

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Crip the Lit: Here we are, read us

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Sue Wootton

Here we are, read usIn 2016, frustrated by the lack of deaf and disabled writers represented in New Zealand writing, Trish Harris and Robyn Hunt founded ‘Crip the Lit‘. Sassy and bold, Crip the Lit is unashamedly remedial in purpose. “We want,” say Harris and Hunt, “to tell our stories our way”. I first encountered Crip the Lit through their presence at Wellington’s annual Lit Crawl festival. In the 2018 festival, for example, the Crip the Lit panel debated the moot that “there is no such thing as a disabled writer. We are all just writers.”

Crip the Lit’s newest venture is the publication of a ‘pocket book’ (available in multiple formats to suit many kinds of pockets): Here We Are, Read Us: Women, Disability and Writing.

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Trivial pursuits?

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Sue Wootton

Ludwig Wittgenstein
Ludwig Wittgenstein, 1889-1951

The limits of my language mean the limits of my world.” Ludwig Wittgenstein.

Secondary school students in New Zealand have recently finished sitting their end of year external examinations. One of those papers was a Level 3 History exam, in which final year students were asked to respond to this quote from Julius Caesar: “Events of importance are the result of trivial causes”.

After the exam, 1300 students signed a petition asking that markers not downgrade their answers if they hadn’t understood the meaning of the word ‘trivial’. The gist of their argument was that ‘trivial’ is not a word that seventeen and eighteen-year-old English speakers in 2018 can be expected to know, and therefore, for fairness, a definition should have been included in the exam paper.

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“Poetry and Mindfulness”

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Sue Wootton

Poetry and Mindfulness

Whatever the advantages of the internet and the many technologies we use to leverage it, there is growing evidence that we are paying a price in distraction and in neurological changes that are affecting our ability to concentrate, to follow lengthy arguments – and perhaps even to empathize with each other.”  – Bryan Walpert, Poetry and Mindfulness.
We citizens of the so-called developed world are living through a rapidly changing, fast-paced and information-dense time. We can trace the effects of this in our daily language. In a relatively short length of time, the digital age has appropriated certain key words, turning once qualitative terms into quantitative ones, and stretching the former meaning of words like ‘connection’ and ‘friend’ almost to breaking point. (I think also of terms once the province of human anatomy and communication, like ‘digital’, ‘fingerprint’, ‘face recognition’ and ‘voice technology’; and the emotional words ‘like’ and ‘love’.) Ostensibly we are the most connected and informed generations ever, yet loneliness, stress, cynicism, anxiety and depression seem endemic.

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