If you haven’t read Dave Steele’s poetry; you’re missing out. Big Time. Steele’s books, Stand By Me Volumes I and II were written to raise awareness and help those living with his condition, Retinitis Pigmentosa (RP). Over the past two years, Dave has lost the majority of his vision to this hereditary degenerative condition which has no treatment or cure. His poetry has gained worldwide attention with both international blind organizations and RP social media support groups.
The Appearance of RP:
In the early 1980’s, a family member of Dave’s was the first to be diagnosed with RP. Back then, there was very little information relating to the disease other than the fact is was both genetic and incurable. The family member was told they would most likely go blind and doctors strongly advised against having children due to the genetic risk.
While Dave was only 7 years old when RP was first detected within his family, he attempted to put the disease out of his mind. It wasn’t until he became a father in 2007, to daughter Ellie, that his concerns for RP bubbled to the surface. While the bond between this father and daughter was exceptionally strong, the same could not be said for Steele’s relationship with her mother, which eventually ended.
When Ellie was 3, Dave moved home to Manchester, giving up a professional cabaret singing career, so he could regularly visit and co-parent his daughter who was living in Scotland. Steele began to notice it was becoming harder to see in darkened rooms, but his vision was otherwise normal.
In February of 2012, he began a relationship with a single mom named, Amy. Amy had two boys of her own, Harvey and Louie. The two began to build a life together, and Ellie fit seamlessly into the equation. Dave was working as a car salesman while Amy went on maternity leave from her job as a beautician’s assistant. In the summer of 2013, Amy gave birth to the couple’s son, Austin. Their family was complete and Dave proposed to Amy on Christmas Day 2013. The couple set their wedding date for December 31, 2014 – New Year’s Eve.
RP Hits Home:
Dave and Amy’s fairytale romance would not last long. In April 2014, Steele’s lingering fears about RP were finally realized. He was diagnosed with this genetic eye disease and declared “severely sight impaired”, similar to the “legally blind” status used in the United States. Just two weeks after the devastating news, Dave lost his job and was told he could no longer drive. With the loss of Dave’s income, the couple could no longer afford to continue renting the house where they had been living. Amy and Dave embarked on a battle with UK social services in an attempt to get the help their family needed. They became riddled with debt and Dave’s gradual loss of his independence left him feeling both anxious and depressed.
Amy refused to let Dave’s RP diagnosis halt their wedding plans. She continued to prepare for impending nuptials, using her own creativity to make many of the items she needed for their special day. In many ways, Amy believed she was in a race against time. She desperately wanted Dave to “see” her walking down the isle because she knew being diagnosed with RP meant every day with remaining vision was a gift.
On the advice of a family member, Dave turned to social media to help find support with his RP journey. The numerous connections he made with others living with RP greatly inspired him. He was also struck by the numerous misconceptions and stories of injustice being experienced by so many blind/visually impaired people all over the world. When a member in one of these online groups learned of Dave’s cabaret background, they invited him to sing at a meeting for those living with RP and Usher Syndrome that November.
Dave was at his lowest point, struggling financially and barely able to feed his family. His overwhelming sense of guilt compounded his depression, causing further decline in his eyesight. While lying in bed one night, he had the idea for his “Stand By Me RP” song. Using the classic song by Ben E. King, Steele altered the lyrics to relate to how he felt losing his own sight to RP. Dave said, “I knew as soon as I had the idea to use the song to talk about everything I feared, that it was the beginning of something big.”
He performed “Stand By Me RP” at the November 2014 event. Attendees, both of whom had either RP or Usher Syndrome, cried upon hearing Dave’s song and his personal story. Steele had never anticipated how his beloved music could help help him promote so much awareness for such a life-changing disease. A week later, Dave recorded his version. The response went global, even reaching a blind radio station in Sweden. “Songs, like great lyrics or poems,” he said “have the ability to touch the heart like nothing else.” To date, Steele’s video has been played more than 5,000 times on YouTube.
The outpouring of support from the blind community drew a lot of attention for Dave. In December, 2014 he was invited to perform his song at Joanne Milnes’ book launch. Milnes was a YouTube sensation in her own right. Born with Usher Syndrome, she had been profoundly deaf since birth. In her mid-twenties the disease began to claim her vision. At the age of 39, her mother videotaped the life changing moment at Queen Elizabeth Hospital in Birmingham, England, where her cochlear implants allowed her to hear for the first time. Like RP, Usher Syndrome, is a rare genetic mutation.
Dave learned that one of the first songs Milnes had heard after getting her implant was Elbow’s, “One Day Like This.” As with “Stand By Me RP,” Dave rewrote the lyrics to Elbow’s song and sent his version to the band asking for their blessing to perform it.
Weddings, Poetry & Performances:
After a difficult year coping with his RP diagnosis, Dave and Amy, finally had their wedding day. On December 31, 2014, surrounded by family and friends, they said their vows to one another, ringing in the new year – and perhaps a new beginning – as husband and wife.
In January 2015, Dave began writing songs and poetry chronicling his journey through blindness. He had received the band Elbow’s approval and it was during Joanna Milnes’ event in February 2015, that Steele surprised the audience with and his take on “One Day Like This.” Since then Dave has been invited to perform at various charity events throughout the UK, including Merrill Osmond’s, The Hearing Fund UK.
A Poet’s Message:
After all the support he had received from RP groups on social media, in March of 2015, Dave created his own “Stand By Me RP” Facebook page. Since it’s conception, the page has become one of the largest social media RP groups in the world. As his eyesight continued to decline, the words did not stop flowing. Dave began writing two to three poems per day about his struggles and experiences. Part creative genius, part therapy, Dave’s writing became a catalyst for helping others and himself through RP.
Steele’s first book, Stand By Me RP Volume I, was released in February 2016. That same day, he received the call that he had been matched with a guide dog. During it’s first week, Stand By Me RP Volume I, went on to become the #1 poetic release in both America and Australia.
In March of 2016, Dave left his family for 10 days to be trained with his guide dog, Christopher, a yellow Labrador retriever. He released his second book, Stand By Me RP Volume II, in February 2017. It became the #1 poetry release in Europe within it’s first day.
Dave’s legion of followers greatly identifies with his poetic realism. With over 500 poems and songs dealing with the fears and struggles associated with sight loss, Steele’s work is helping to diminish many of the misconceptions associated with blindness. His mission through his poetic verse is “to help those who are being isolated by a condition that strips us of our independence, let them know that they aren’t alone, and help educate loved ones on how we feel.”
Testimonials & Volume III:
Testimonials for Dave’s poetry continue to pour in from all over the world.
“I am the mother of a grown daughter with Retinitis Pigmentosa. As Dave wrote these poems she would share the ones that she liked with me. There have been a lot of them. I bought several copies of both books to share the with family. These poems have been heart breaking at times but they have been windows into my daughter’s mind and heart and soul. I have learned more about her sight and her experiences from these poems than I have from talking directly with her and we have used them to start conversations. Dave has supported her to be a stronger woman, to take on challenges that seem impossible, and become an advocate for visually impaired and blind people.” Laura Patterson Edmonton, Alberta, Canada
“Going blind is thing hardest thing I’ve ever endured. When I first received my diagnosis with RP, I became depressed and angry. However, I had no words to form. As I read through Dave Steele’s poems, I felt my anger, depression, and hopelessness diminish. His poems were written with such passion and harsh reality. When I can’t explain, I share one of Dave’s poems. Not only did Dave’s poems help me heal but it helped others who love me, understand me.” Barb Calhoun, West Virginia, USA
Dave’s last book in this series, “Stand By Me Volume III” will be released in February 2018, during Retinitis Pigmentosa Awareness Month. For more information on Dave Steele, follow him on Facebook, Twitter, Youtube, and Instagram,. To order your copy of Stand By Me RP, Volumes I and II, visit Amazon.
Are you a fane of Dave Steele? Are you currently living with RP or Usher Syndrome? Drop a comment below.