Lesley's Story

“Look straight ahead over my shoulder”, she said as she shone the bright light into my eye.
I can see an orange orb with red squiggly lines. Is that the back of my eye? I think. It’s very pretty. Like a distant planet. She looks down at the instrument and then at me.

“You do have glaucoma.”

The words I had been dreading. Four words and I feel as if my feet have been swept out from under me. Even though I’m sitting down, I feel winded and totally devastated.

What does this mean? What is my life going to look like now? I cannot go blind. I cannot. I just can’t. Hot tears fall and Dr T hands me tissues as she speaks. She has a kind, soothing voice. She is matter of fact but empathetic. I try to take in what she is saying.

Two weeks ago my optometrist found the culprit that led to this place. I was there for my annual check up and we’d done the usual tests concluding with the hated visual fields test. She brought up results on another machine, one I hadn’t seen before and she was studying them very carefully. She told me to come and look. There were pictures and graphs and words. Lots of words with funny symbols. She explained that this was a picture of my optic nerve and it showed that it was thinner in part.

“Well it’s the only part of me getting thinner these days.”
She didn’t look amused.
“It means you may have glaucoma.”

Oh shit! Well that wiped the smile off my face. All I know of glaucoma is that it causes blindness. Oh shit!

Paula made a phone call for an appointment for me to see a specialist ophthalmologist. Two weeks time is the earliest. She wrote down the details and I walked out of the room. Out of the door into bright sunlight on my enlarged pupils. Ouch!

I sat in my car for a bit trying to get my head around what I had just been told. Oh God! Well it might not be, so there’s no use worrying and I can either spend the next two weeks in hell or I can choose to be hopeful and face whatever… once I know for sure. Only two weeks. I was too scared to think of what might be.

So, here I am two weeks later, diagnosis conclusive. Shattered.
I’m the carer, I’m the driver, I’m the see-er for my husband who has significant sight loss due to illness. Of all the things I could have …the irony is not lost on me. I imagine us older, sitting in our lounge room, both of us in the dark. Hard too is the fact I have to tell my first degree relatives; my children, my sisters and my brother. It’s genetic and it runs in families. Where did it come from? Who passed the baton to me?

My daughter is coming to pick me up and I try to look normal.
“How did you go mum?”
I begin to tell her and the tears fall again. I talk through huge gulps.

I spend the rest of the day in a grief filled daze. I don’t want to be alone but I don”t want to talk. I stay close to Cait. It’s somehow comforting. I try to keep busy and think of other things but with little success. I’m so frightened. Is this the rest of my life? I can’t do blind. What if my kids have it? What if I’ve passed it on?

Later, not sure of time frame but I’m all cried out, Dr T’s words come back into my consciousness and I listen to them.
“We’ve got it early. That’s good and offers the best outcomes. You will not go blind in your lifetime.”

There it is. There’s hope. I choose hope and hold onto it with all my might.

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