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'Blind Poet' turned the loss of his vision into an opportunity to build a community on Facebook

At his most vulnerable moment, he found the gift of self-expression.

blind poet, retinitis pigmentosa, dave steele

via Meta Community Voices

Dave Steele aka "The Blind Poet."

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Dave Steele was diagnosed with retinitis pigmentosa (RP) in 2014 and told that he would slowly lose his vision until he was completely blind. Imagine the pain and stress of knowing that every day your sense of sight will slowly diminish until you fall into darkness.

Steele was not only losing his sight, but after his diagnosis, he felt he lost his purpose.

The diagnosis came with an added gut punch: His children also have a 50% chance of having RP. Steele lost his job, his family couldn’t afford the rent on their home and the waiting list for government benefits was nine months. "I was feeling more guilty about the pressure I was putting on my family and that, in turn, was affecting my vision loss as well and I became more anxious and more isolated because of it,” he told Henshaws InSights.

As his troubles mounted, Steele found solace in talking to others coping with sight loss through Facebook community groups. “That was a real massive, massive help to me,” he told Henshaws InSights.

Steele told his new friends in the RP community that he had worked as a singer, and they invited him to perform at a support group meeting. The night before his performance, he had a moment of pure inspiration. He decided to change the lyrics to Ben E. King’s hit, “Stand By Me” to reflect what life was like living with RP.

Dave Steele Stand by me RP awarenesswww.youtube.com

This opened the door for his sense of purpose in life to return. "People were coming up to me saying that the words I had written were able to describe how they had always thought about their journey with sight loss when they were unable to find the words themselves,” he said.

In coping with his disability, Steele discovered a talent he never knew he had.

“I never considered myself a poet before I started to lose my sight. I worked as a singer since the age of 18 and had written a couple of poems and songs about things like previous girlfriends. But it wasn’t until I started going blind that I found the ability to write these words that have helped so many people,” he told Upworthy.

This realization led him to create a community for people dealing with RP. Every day he wrote about everything he was going through in poetry and posted them on Facebook RP groups. The experience was cathartic for Steele and his followers.

His poetry gave people words to describe their journey they wouldn’t have had otherwise, and helped countless people feel they weren’t alone. That’s when Dave Steele truly became The Blind Poet. Steele has created a community on Facebook where thousands come to read his poems, share their stories, connect and support one another. He has written more than 1800 poems, published four books of poetry and written a book for children with low vision, “Austin’s Adventures.”

In 2019, Steele, who lives in Manchester, England, was able to do his first speaking tour of the U.S.

Steele uses his persona as The Blind Poet to clear up misconceptions about people with low vision.

“Being blind doesn't mean that we can’t see anything. Ninety-three percent of people affected by vision loss have some kind of remaining vision. This misconception isn’t anybody’s fault but the lack of education surrounding blindness can cause people like me to become isolated,” he told Upworthy.

Steele believes this misconception makes visually impaired people less likely to use their mobility aids such as a seeing-eye dog or cane in public.

“I’ve been accused of faking my blindness many times by strangers when I’m out and most people living with vision loss have been told ‘you don’t look blind,’ but what does blindness look like?” he added.

Steele wants people to know that “blindness is a spectrum, that there are many different shades and ways to lose sight.”

The Blind Poet’s writing has a big effect on people regardless of their ability to see. “Those affected relate to the words I write and those who aren’t, close their eyes and put themselves in our shoes,” he told Upworthy. “I talk about themes that everyone can relate to whether living with a disability or not."

The poem that’s had the biggest reaction is “The Secret,” dedicated to Steele’s daughter who lives in Scotland. “It’s about the internal struggle with when is the right time to tell your child that they have a one in two chance of going blind when they’re older due to the condition I have,” he said.

“The Secret” By Dave “The Blind Poet” Steele

It took me years to come to terms with how my eyes declined

Through stages of acceptance of slowly going blind

But nothing I could ever do would allow me to prepare To tell my little girl the thing I still don’t want to share

It’s tortured me through sleepless nights consumed my mind with guilt

This secret I have kept from her could break the trust I’ve built

I pray that she will understand the things I tried to do and why I never told her that she could be 1 in 2

For she is still a child and far too young to burden with

a fate that I might pass to her for now’s her time to live

But soon will come a moment when I know she must be told

When all the battles I have won I’ll pass for her to hold

But for every unheard question there's an answer I’ve prepared

They’re written in each line each verse each poem that I’ve shared

For every page I’ve filled I’ve emptied out my heart and soul

So one day she would know the way

That’s always been my goal

So Ellie I hope years from now you’ll be there reading this

Know you can do amazing things whether RP hit or miss

My inheritance to you won’t be a passed down faulty gene

But knowing all life’s beauty that this VIP has seen

The Blind Poet Dave Steel standing in winter clothes in a copse in fall with his seeing eye labrador retriever sitting by his side. Dave Steele

His words also helped a 7-year-old girl named Jackie stand up to bullies in Amarillo, Texas. Her mother taught her one of Steele's poems and she recited it to speak up for herself. The Blind Poet met the family at an event where he spoke and wrote a poem for her. Here's an excerpt:

I may be only 7 but it's getting hard to see

They notice first the cane I hold but "Hi I'm still Jackie"

For I am just a little girl who loves to swim and dance

Will do it every single day if my eyes give me the chance

The classroom lights can sting my eyes

Some days I just black out

I try to do the best I can

Despite the ones who doubt

Don't treat me like a baby

I am small but I am strong

No matter how my vision fades

It's my world and I belong

Steele hopes that everyone who is struggling with RP can find community like he has. “Losing sight can feel very isolating and often it’s easy to feel like we are the only ones going through it,” he told Upworthy. “But through the words in my poetry and the many amazing support groups on social media, realizing we aren’t alone can be the first step in acceptance and taking our lives back.”

Facebook has been a life-changing tool for bringing visually impaired people together. “There are so many incredible support groups and pages that are created by people who are going through the same things,” he told Upworthy. “Just being able to connect with someone like that is so important and it’s been integral to my story.”

Facebook has also given him a voice.

“Without Meta/Facebook I wouldn’t be where I am today or known as The Blind Poet,” he said. “To be able to write a piece of poetry and upload it by clicking a button and sending it around the world and to someone who needs to hear its message is truly an incredible thing.”

Steele finds that Facebook’s accessibility features have improved over the years and helped the visually impaired get the most out of the platform.

“Things like dark mode, allowing users to invert the colors on the display to reduce glare on the eyes,” he said. “Also larger text options and, of course, VoiceOver make sure that we can connect with people just the same as anyone else.”

After facing adversity, Steele has turned it into an opportunity to uplift countless people who are facing a devastating diagnosis. Even though his sight may be fading, his dedication to helping others is only growing stronger.

“Being known around the world as The Blind Poet is something I never take for granted,” he told Upworthy. “Every day, I try to reach more people and replicate the impact my poetry has already had with others. I want the opportunity to speak at more events around the world and ultimately to continue to be a voice for those who are comforted by my words.”

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Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

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It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horse Gina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowing Nathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great dane Helga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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