“Everyone wants to be special, but medically special is the one kind of special no one wants to be”

Posted: Monday 31 October 2022
Jessica Smiling

"At first it was just things like not being able to read the TV guide, or struggling with text messages on my phone. I couldn’t see the bus numbers until the bus was almost on top of me. I would look at people walking down the street and think they were strange looking, until the next person looked the same. I’m a working mum and thought I was probably just tired.

"But I was also getting quite embarrassed as I wasn’t recognising people in the street. They would say they were waving at me but I didn’t see them. I went for an eye test, thinking I just needed a stronger prescription.

"Instead, I was told I needed an urgent appointment at the hospital. I went to the eye clinic the next day. The doctor asked if I would mind if a junior doctor came in to take a look too, and when she came into the room, the doctor asked her, “Have you ever seen a full thickness, stage four macular hole?

"It was as though everything in the room stopped.

"All I heard was ‘stage four’ and all I equated that to was cancer. I didn’t know what I was going to do. And, I also had a hole in my eye. I thought ‘I’m going blind.’ My head was swimming.

"When they explained what it was and that it wasn’t cancer, I burst into tears. I was relieved. But I still had a hole in my eye. I walked out of there like a zombie, having been told to ‘go away and enjoy Christmas’. I had a couple of near misses crossing the road that day.

"I just couldn’t process what I had been told. I knew the clock was ticking, that I had to start treatment as soon as possible. I was scared, and I didn’t have anyone to talk to. I didn’t know how to explain it all to my family. I didn’t want to be a burden. And I felt like a failure.

“Everyone wants to be special, but medically special is the one kind of special no one wants to be.

"Then I began to panic. I’m someone who really loves my job. I love working with kids. But how can you have a teaching assistant that can’t read? I was so worried I’d lose my job. I couldn’t find any information about being able to work when you’re losing your eyesight.

"I phoned the Macular Society and the support was there just like that. It was they who told me that my employer had to make reasonable adjustments so I could keep working. And that gave me hope. I wasn’t going to give up my job without a fight. There are ways around things. I do a lot of social skills work at school these days. They slot me into the bits I can do. There are a lot of years left in me yet, and the kids at school are phenomenal. Kids just make everything so normal.

"I’d love it if research meant that this couldn’t happen to my children or grandchildren. I have a granddaughter now. She’s 19 months old. She picks up my magnifying glasses and she holds them straight up to her eyes, because she’s seen me do it.

"I’m learning to adapt and live with the sight I have, and who knows, by the time I’m in my 60s or 70s, they might be able give me my eyesight back and the glasses will just live in a drawer.

"I am hopeful. I just don’t want to lose any more vision. Because, for now, I can see my kids, I can see my grandchildren, I can do my job to a degree and that’s good enough for me. And I’ve discovered I like gardening a lot. You can get out in the garden, and you don’t have to have perfect vision. I just sprinkle the seeds anywhere and hope for the best." 

Jessica has shared her story as part of the Macular Society's 2022 Christmas Appeal. You can donate to the appeal. 

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