My story began three years ago when, at the age of 38, I was diagnosed with Retinitis Pigmentosa.
My life changed forever that day and it was the start of the biggest challenge my family had ever faced. Within the first week of my diagnosis I was declared severely sight impaired (legally blind) and lost my job after being told I’d never drive again.
We were plunged in to debt and I fell in to a spiral of anxiety, depression and isolation as my sight began to decline rapidly. We applied for support in the form of benefits, but – due to application times – we couldn’t afford our rent and even had to take food parcels in order to feed our children.
My partner Amy and I felt like we’d been hit by a sledgehammer. We were preparing to get married on New Years Eve and we had just had our son Austin, who was 8 months old. As my sight closed in on me, I really lost my way. My independence vanished and I became reliant on Amy for everything. I couldn’t deal with the debt and became depressed as I was consumed by guilt.
Our situation was even more difficult because, prior to my diagnosis, I was the sole provider as my wife was battling post-natal depression and post-traumatic stress due to a horrendous labour with Austin.
We tried everywhere to get the help but we were failed by the system and organisations who were meant to be there.
Then one night, everything changed. In a bid for support, I reached out to the RP Facebook groups – and, in doing so, connected with a group of people with RP and Usher Syndrome.
After a couple of meetings, I was asked to be the entertainment for a gathering in Newcastle that November. I had been a professional singer for many years, performing all over the world.
One night in bed I was preparing for my spot at the RP/Usher meeting by trying to decide what songs to perform and I came up with an idea I knew instantly would be the start of something big. I decided to take a song that everybody knew and change the words so that everyone in the room could connect to the song: I chose the song Stand by Me by Ben E King.
Ten minutes later, I had written what was to be entitled Stand By Me RP. A week later, I recorded the song on my mobile phone and uploaded it to YouTube. I couldn’t have predicted everything that would follow. After posting the video on the various sight loss Facebook groups, I began to receive messages from people all over the world telling me how I’d managed to say the things that they had wanted to say but could never find the words regarding their sight loss.
The emotional messages continued to pour in from people all over the world regarding Stand By Me RP. Suddenly I began to feel like I’d found my purpose.
With every day that passed, I began to write poetry of every experience I had losing my sight. I found a purpose in sharing every hope, fear and tear with the world. I created the Stand By Me RP awareness page, which has now become one of the largest online RP support groups in the world.
To this day, I have written nearly 400 poems covering every aspect of vision loss. I’ve had my poetry published and both Stand By Me RP and Stand By Me RP volume 2 became #1 releases in America on Amazon. My poetry continues to help and support those affected by all forms of sight loss and their loved ones – and I have found me again.
RP can still get me down some days. I now only have 5% vision remaining. But I see the world in a way I never could have imagined before I started to lose my sight.
Dave Steele, from Manchester UK, is a former singer turned blind poet when he began to lose his sight due to Retinitis Pigmentosa. Despite never writing a poem before he was diagnosed, he has now written two best-selling books and his Facebook page, Stand By Me RP, is now one of the largest RP support groups in the world. For more information, listen to Stand By Me RP on YouTube and follow Dave on Twitter at @Steele75.