Leafing through the bridal magazine, I was so excited. After meeting my partner Tim, 36, online, I’d known instantly that he was the one. Now with only two months to go before our big day, my mum, Judith, was helping me look for a dress.
‘Why are you holding the magazine so close to your face?’ she said.
I hadn’t really noticed, but now she mentioned it, I realised it was the only way I could see the pictures clearly.
‘I’m probably just tired,’ I replied.
I worked as a nanny and had taken an evening job as a kitchen-hand to get some extra cash for the wedding. But over the next few weeks, my eyesight deteriorated further. I couldn’t read the newspaper and struggled to use the computer.
It’s like I’m going blind! I panicked.
Terrified I’d get an awful diagnosis before my special day, I put off having an eye test. By the time Mum and my dad, Bob, walked me down the aisle in October 2010, I couldn’t even see Tim’s face at the altar.
Then in January 2011, my driving licence was due to expire, so I went for the standard eye assessment to renew it. Failing every part, I was advised to see an optician. I was then referred to hospital. After a series of tests, a specialist broke the news that I had dreaded.
‘You have an eye disease that causes vision loss and blindness,’ he said gently. It usually affects people over 60.
‘But I’m only 33,’ I said, breaking down. It felt like my world was crashing down around me as he explained there was no cure. ‘So I’m going to wake up one day and not be able to see my husband’s face?’ I sobbed.
I was given eye drops to try to slow down the disease, but nobody could tell me why I’d been affected. Worse, they couldn’t tell me how long I had before I went completely blind. I had to stop nannying and I dreaded the day I’d have to give up my favourite hobbies of cooking and scrapbooking.
‘I’m going to lose all my independence,’ I cried to Tim.
When my beloved parents both passed away in quick succession, I felt even more lost. ‘I can’t do this,’ I told Tim.
‘Come on love, you can,’ he said.
Not long after, I heard about the Blind Foundation, so I called and asked if they could help me. It was wonderful to speak to people who understood what I was going through. They gave me a white cane, which I hid in the wardrobe because I was so embarrassed.
But I was open to other things. They put raised dots on the dials on my oven so I could still bake, and they taught me techniques so I could keep scrapbooking.
‘Feel for the stencil and write between the lines,’ they told me.
‘I can’t do it,’ I said, feeling frustrated.
‘You can do anything you like,’ they reassured me.
And I did try. I was especially proud that I’d continued to work four days a week as a kitchen-hand. There were low points though, knowing that one day my world would fall into complete darkness.
In 2014, I was officially diagnosed with retinitis pigmentosa (RP), a rare inherited degenerative eye disease that causes blindness. With no option, all I could do was wait.
Holding Tim’s face close to mine, I tried to memorise every part. I also began learning Braille and I had a voiceover put on my computer.
Mum and Dad wouldn’t want you feeling sorry for yourself, I told myself.
I even started using my cane. By counting steps, listening for noises and remembering smells, I was able to go out by myself. Before I knew it, I was shopping without Tim.
‘Just put everything in the right place, so I know where it is,’ I told him.
Sometimes there were mishaps. ‘You put dirty plates back in the cupboard!’ Tim chuckled one time.
And we had a good laugh when I walked into the men’s toilets! But at least I was getting out. So when the foundation asked for a new team leader, I put my hand up.
‘I’ve volunteered us to run the socials,’ I told Tim.
‘Awesome, we love a party!’ he said.
Then, in April this year, I had an appointment with my specialist, Dr Harry Bradshaw. He did an electric test, where he looked at my eyes and brain to try and fully understand my condition. After two hours, there was some unbelievable news.
‘There’s no brain damage to the eyes,’ Dr Bradshaw said. ‘You will lose some more sight over time, but you’re not going to go fully blind.’
For six years, I’d lived in fear, terrified of the moment my vision disappeared.
‘I can’t believe it,’ I cried.
Now, I can see things very close up, but everything else is a blur. I’ve travelled abroad alone and Tim and I have date nights and go on day trips.
‘There’s a rainbow going right across the sky,’ he’ll say, describing whatever is in front of us so I can picture it in my head. I’m so lucky to have such a special, supportive husband.
I wouldn’t be where I am today without the foundation either. On their 125th anniversary, I even made them a scrapbook. It sits at the front desk to show other visually impaired people what they can achieve.
Because of them, I have a life I love – that’s clear to see.
This story was originally published in that's life! Issue 30, 27 July 2017.