My Journey - Betheney Cody

My name is Beth, I’m an Adelaide-based writer of short stories and poetry. In 2018 I was diagnosed with Retinitis Pigmentosa. I’m the only person in our family who has RP that we know of. In March I’ll be requesting a genetic test to hopefully see if I’m likely to pass this on to my children andto get a rough idea of when my sight will be severely impacted. For the last four years I’ve been fortunate to have a relatively steady level of sight, although I’m no longer driving or trying for my license, as night driving would be really dangerous, for myself and others.

February is RP awareness month, or low vision awareness month, so I took the plunge and started to share my journey and experiences with living with RP across my social media.Initially, I was scared to share something so personal, to open up about a part of my life that I’m still coming to terms withand some days still struggle to understand, but so far it’s been really rewarding. I’ve discovered this fantastic, diverse, positive and honest community of people living with visual impairment as well as other disabilities, visible and non-visible.

I recently had the opportunity to speak with Stella Glorie, Senior Communications Advisor of Vision Australia, about my experiences living with RP on the Talking Vision segment of Vision Australia Radio. I was incredibly nervous as public speaking has never been my strong point but it was worth the racing heart, sweaty, cold palms and my awkward ‘ums’ and ‘ahs’. I’m so thankful that Stella reached out to me becauseit’s been almost cathartic speaking about my journey so far. I hope that in even some small way, the discussions we have around living with blindness can and do help people who are struggling or who are worried about their eye health and aren’t sure what to do. It can be daunting to admit that something might be wrong and difficult to seek help, but I think it’s worth knowing for your own peace of mind and for your safety, as well.

I’m really lucky to have such supportive people around me, my partner and my family, friends, as well as my retinal specialist. On the day of my diagnosis, they didn’t sugar-coat it, they told me straight out what to expect and although it was overwhelming in the beginning, I’m glad to know what I know now, rather than to be left in the dark – if you’ll excuse the pun. So for now, I take each day as it comes and recentlyI’ve started to explore my experiences with vision loss through poetry and fiction. It wasn’t easy at first, being so close to the subject, but slowly the words have started tocome. I hope that with my writing I can bring more awareness to some of the plights and aspects of the VI community, as well as representation within the literary world.


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