Spotlight on Dave Steele
What a treat you’re in for today!
Meet Dave Steele and his family. Dave’s the big guy with the grin on his face. But he wasn’t always smiling. It’s not easy when you’re going blind. But now Dave has found a new “focus,” and that’s getting the word out about Retinitis Pigmentosa (RP). Read on to learn more about Dave!
Our guest is a husband and a father, a world traveler, a talented poet and a professional singer on a mission. He’s here to get the word out about RP (Retinitis Pigmentosa), which he, too, suffers from. As an entertainer, songwriting (or adapting songs) is a natural vehicle for him.
Dave, born and raised in the UK, has been profoundly affected by his RP. Although he had known it was in the family since he was a kid, it didn’t affect his life until he was thirty-nine, when he ebxperienced a huge drop in vision. Make sure to read Dave’s story, in which he shares the dramatic highs and lows he experienced, especially at the hands of this inherited disease. It also explains how this performer came to write his theme song, “Stand Be Me RP,”which he’s using to get he word out about RP and Usher’s Syndrome, a related disease. In his version, spun off from the original Stand by Me, the lyrics express the fears many suffer from losing vision.
You can see Dave performing his theme song in this video.
This song is impacting listeners! Dave says, “Music is a simple way of getting the message out there so everyone can understand,” and adds that it’s been played on the radio in Spain, Hungary, Japan, Canada and even Sweden. He’s even had feedback from New Zealand and Australia. He’s amazed that a simple idea can spread so far. Do we have readers from other countries? Where ever you live, please share this song. People all over the world who suffer from this want change.
Dave and I both have RP. We represent the 1 in 100,000 that inherit this eye disease and will go blind. In addition, I have Usher’s Syndrome (which, as you just read, includes progressive hearing loss). Help us get the word out about these diseases. We want others to know and understand. So like, Share, Tweet, Google+, and whatever else you can do to pass the word on in your communities.
I mentioned earlier that not only does Dave sing, he also writes poetry. This is a sample of one of his poems. Does it help you understand what he feels? What I feel? I sure hope so!
Come hold my hand as we stumble in to the darkness,
walk by my side as the world disappears.
Help me see what’s left can still be cherished,
take my mind off all that’s to be feared.
Let my voice be the light to help to guide you,
hear my song when the fog fills your eyes.
Feel my words on the days you need to feel them,
be my strength on the days I can’t be yours.
Get me out in to the world I don’t feel part of,
say I’m wrong to feel that I’m alone.
Close your eyes and imagine they’ll never open,
learn to walk in a new way from before.
Know there’s strength in us all we need reminding,
Call me friend when there’s laughter when there’s tears.
© Dave Steele