“Constantly adjusting” – what life is like with Retinitis Pigmentosa (RP)

Mancunian poet Dave Steele, was diagnosed with Retinitis Pigmentosa (RP for short) in 2014, and since then has been sharing his journey and spreading awareness on the eye condition in his book series 'Stand By Me RP'. Dave has also recently joined Henshaws' team of ambassadors, who act as role models for people with a visual impairment. Dave shares with us his personal experience on living with sight loss and his insight into life with RP.

Image of Dave holding a copy of two of his books, smiling at the camera.

“The term ‘constantly adjusting’ is one a lot of us with RP use. But do our loved ones truly understand what it means to us? Do they really get how being in between the blind and sighted world can be both scary and frustrating in equal measure?

Sometimes I feel like I can see like everybody else, I’ll be out with my guide dog or my long cane and I can see the faces of people that pass me by with “that look”. I see the brief look of confusion as I make eye contact and return a smile or a nod of recognition. I sometimes feel a fraud myself, I doubt whether I need my cane or dog and fall in to the common misconception that only someone who can see nothing at all needs a mobility aid.

But all that can change in a blink of an eye, quite literally in a blink. One minute I feel like I can see okay, next I definitely can't.

All it takes is a change in the light, a sudden flash of sunshine that blinds me with painful glare or a mixture of natural and artificial light, which I often get in supermarkets. It causes my vision to suddenly fog over, like viewing the world through a misty window.

The amount going on in my tunnel of vision has a lot to do with how well I see. In the same way that I now struggle to watch a movie where there’s lots of action or special effects, because my eyes can no longer interpret the busy fast movements on the screen. If I’m out and I go from a quiet place to a busy shopping centre, then I can’t see well at all. I trip and bump in to strangers, my tunnel seems that much smaller and my chest gets tighter as my anxiety takes hold. The less I see causes me to stress out and the more I stress out the less I see, as stress can mean my sight declines quicker. This constant adjustment to my ever changing sight can affect my energy levels.

The smaller my tunnel of sight, the more I have to concentrate and that means I get wiped out quickly and often. It’s the same as a driver driving a long distance without a break; doing nothing but holding the wheel and concentrating on the road ahead and all its hazards. It’s this exact reason why I need my cane and why I need my guide dog, Christopher. When using a mobility aid I am safer. I can use my limited vision to look straight ahead and use my cane or my dog to detect and avoid all the obstacles that my failing eyes miss.

I know there are literally thousands of people who are visually impaired still battling with themselves as to whether they are at the stage that they need a cane or a guide dog. I hope reading this and relating to it might sway someone in to taking the first step to realising it’s not too early to need help. I hope that reading this answers some questions for our loved ones that they might have never thought to ask. I hope that when we talk about constantly adjusting in the future the world understands a little better.”

– Dave Steele #StandByMeRP

You can also visit Dave’s ‘Stand By Me RP’ page on Facebook at facebook.com/StandByMeRP.

If you’re trying to come to terms with a sight loss diagnosis, get in touch with Henshaws First Step on 0300 222 5555 or at info@henshaws.org.uk. Our specialist team can provide you with  advice and information, as well as emotional and practical support to help you overcome everyday challenges, and take your next step. 

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