Let there be light: macular degeneration and me

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.

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.

Yes, I now have a large screen and large type; yes I now read only ebooks and get all my news online. Technology rules, okay? And I am grateful for it. But it’s the same old grey gauze curtain I’m peering through. Its thickening all the time.

What annoys me, out of all proportion, is that everything I’ve done to help myself has had to be explored/discovered/instigated by … me. A couple of friends have passed on information. Blind and Low Vision NZ (formerly The Blind Foundation) has been helpful but need to drag themselves into 2019. When you join you still have to choose between Māori or Pakeha. My mother was Māori, my father Pakeha, so I want to include both. But I had to choose one, so I chose my mother.

The ophthamologists, the eye doctors/specialists, have done no more than pronounce the verdict: macular degeneration. “You will always be able to find your way round,” one said, as if he was reading the weather forecast. “You will be able to see shapes.”

None of them, not one, has offered any help, suggestions, advice on how to deal with it. No information about possible aids, not even the information that white light is better than yellow. They were happy to accept the large fee though.

I have a white stick and at first I used it all the time. Then I discovered that people treated me differently when I was using a yellow-and-black Viz stick I bought in Dunedin. So I began to use mainly the yellow-and-black stick. When I use the white stick no-one says, “Kia ora Renée”. In fact they edge around me trying to look as though they haven’t seen me. When I use the yellow stick they say, “Kia ora Renée, how’re you doing?”

I sound angry and I am. This is huge for me. I have had cancer twice; the second time I had a bilateral mastectomy. I’ve had heartaches and happiness and I know, because every damn medical person tells me, that I’m old. Like it’s something I might not have noticed? Old age is to blame for everything. But my old age didn’t make the medical profession so uncaring or dismissive – they did that all by themselves. Just because I’m ninety and have macular degeneration does not mean I stop thinking, working, feeling, living, peeling potatoes (with great care), peering at the first spring iris. Just because I’m ninety does not mean I lose the power to feel, to experience, to know when I’m being patronised.

It’s a constant struggle to be recognised as a living breathing intelligent female human being anyway. I still have to correct some of them calling me Mrs. And others have to be stopped ticking the ‘retired’ box without asking me first. Hello? I go to work every day, mate.

The fact that I’m 90 does not change that. And if one more person, often male, tells me that exercise and walking will bring me joy and love, so help me, I’ll do something drastic.

However – I am not alone. There are still people who read books, garden, laugh, sing, smell roses. There are still people who hold out a hand when I’m coming down steps. There are still those amongst whom I can sit down and weep and still be regarded as a warrior.

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Renée is one of New Zealand’s most admired playwrights and novelists, the author of over twenty plays, the memoir These Two Hands and nine novels, the most recent of which is The Wild Card (The Cuba Press, 2019).

• Read more on Corpus about Renée and her work: ‘This place called old age‘
• Read Lynley Hood on becoming visually impaired: On becoming illiterate
• Read Julie Woods on going blind: The joy of blindfulness
• Read Ron Esplin on Braille art and the the power of touch: Vision!

Photo of Renée at Cross Writers event (Dunedin, October 2017) by Doug Lilly.