Stepping back into the light.
After 71 years of perfect vision, a rare genetic condition left Jenny devastated. And she would still be living in the shadows if it weren’t for wonderfully generous people who support Blind Low Vision NZ (Formerly Blind Foundation).
“When the Blind Foundation [now known as Blind Low Vision NZ] came into my life, it was like a door opening and light shining in. It was wonderful.”
All her life Jenny has been a determined, independent and a fundamentally positive person. A mother of four and a grandmother of seven, she has degrees in both mathematics and Japanese, as well as a refined skill for fine needlework and quilting.
Jenny was diagnosed with Vitelliform Macular Dystrophy, a rare genetic condition that left her mother and grandfather blind, and has also affected her two brothers and sister, in one eye each. Unfortunately for Jenny, she drew the genetic short straw. Her condition was dormant for 71 years, but when it did appear, it hit particularly hard – she developed the condition in both eyes.
“Initially I didn’t believe it, but then the realisation dawned. I think at first I was numb. I was shocked. I was the one in my family with good eyes.”
For such an active, involved and intellectual woman like Jenny, the thought of never being able to see clearly again was almost too much to accept.
Jenny had always seen herself as the one who everyone relied on. She was always the person her family turned to. Now life had turned upside down, and Jenny had no choice but to push through the darkness:
“Life was an absolute struggle because I couldn’t read or use a computer. I had a phone, but I couldn’t ring anyone. I had to hand it to strangers and say, ‘Can you ring this person?’ In the supermarket, I couldn’t read the prices. I had to ask people to help me. It was so hard.”
Then, before Jenny could even begin to come to terms with her devastating condition, fate dealt a second cruel blow:
“My husband was raced to hospital with a Triple A. That’s an abdominal aortic aneurysm. Suddenly he can no longer provide support, and that made it very hard. It was extremely frustrating because people just didn’t understand. With my husband in hospital they would say, ‘Look, we’ll send you this information out.’ And I’d say to them, ‘But I can’t read it.’
You feel so isolated. You feel cut off, like you’re not really part of the human race. It’s all going on around you.”
For Jenny, the mental adjustment to a life without vision was very difficult. But she remembers how grateful she was to have the comfort and guidance of professional counsellors.
“When my eyes went, I thought: ‘I’m absolutely useless now. What’s the point of living?’ But this has passed. The Blind Foundation [now known as Blind Low Vision NZ] Counsellors helped me with that.
When you think it’s all closed down and it’s all over, and you’ve got nothing to look forward to, they open that door.”
Blind Low Vision NZ was at Jenny’s side to help in very practical ways too. From learning to use the microwave again, to telling the time and using a white cane, accessing emails and getting on the internet
But perhaps one of the biggest comforts to Jenny was rediscovering the world of literature. An avid reader all her life, Jenny would easily devour a book a night when she had her vision.
With help from Blind Low Vision NZ and the latest technology, Jenny now has access to a whole world of books that was closed to her
“I can actually read books again now, but my eyes get very tired. So I can’t read for a long time. But I can read, which is like stepping through into the sunlight.”
Jenny’s sunlight metaphor is particularly apt and inspirational. Bringing light to people’s lives – that’s our purpose every day here at Blind Low Vision NZ.
“It’s a new life, it’s a new way of living. But it’s still good. And the Blind Low Vision NZ made it so. I have nothing but praise for them and their wonderful supporters. They really have given me back my life.”
If you would like to help many more New Zealanders like Jenny, consider donating to Blind Low Vision NZ today.