In my early 20s I began to struggle moving from light to dark places. Even though I knew I had retinitis pigmentosa (RP) in my family, I wasn’t officially diagnosed with it at that stage. I was probably in denial about my vision loss.
Five years ago, I went into an appointment at my local opticians and they told me that I should stop driving immediately and they would refer me to a retinal specialist. I was working in car sales at the time. Due to not being able to drive anymore, they let me go. I lost my job and then a week later I was diagnosed as being severely sight impaired. In the first year, we lost our house, I fell into a depression and struggled with anxiety. I went through the first 12 months not leaving the house without my wife.
It was through speaking to people online and making some friendships that I was asked to go and attend a meeting in Newcastle for people with RP and Usher Syndrome. The night before I was due to go and sing at this event I was in bed with my wife choosing what to sing. I chose Stand by me by Ben E King. I rewrote sections to reflect my journey with RP and performed it the following day. People cried when they heard what I had written. It was from that moment that I started writing the poetry.
“I didn’t know what I was going to do next. Writing poems and using them in a way that could help people gave me back that purpose again”
To this day, I have written over 700 poems in five years, published three books and established a Facebook support group. The poems cover all aspects of vision loss and help people understand they aren’t alone. Later this year I am going to America to do a book tour for six weeks. I will be going into visually impaired schools and taking poetry workshops where I will be teaching them how to write their own poetry.
I always say to people, when I first started to lose my sight, I went through all of the things that most people go through – losing independence, my confidence, my pride – but the biggest thing it took from me was my purpose. I didn’t know what I was going to do next. Writing poems and using them in a way that could help people gave me back that purpose again.
One of the most difficult things for people living with visual impairment is that you are constantly adjusting to the decline in sight loss. Any little change in vision when you have limited sight is very noticeable. I’m at the stage now where I have got a couple of years before it completely goes.
You never stop being scared, but it is about learning to cope with that fear and still getting out there. Although it never truly goes you learn to breathe through it. Vision loss is like anything in life – any challenge that people face – you find a way to adjust.
I do the bedside stories every night with my son Austin. My wife says, ‘While you can still read to him, you should because it is about making memories.’ I read poetry books because they are easier to memorise. If I am having a bad eye day I don’t necessarily need to see every one of the pages.
I’m a better father, a better husband and a better friend because of RP. I look at life in a different way now. I cherish the moments in each day. It’s not something that I regret because of what it has taught me as a person. Touch wood, I hope there is going to be a cure or some kind of treatment for my children if they have the condition when they are older, but, for the lessons it has taught me, I wouldn’t change it for the world.
- As told to Selina Powell.
Image credit: Paul Fawley