The Super-Sticky Shoes: Living With Retinitis Pigmentosa When the World Can’t See the Glue

By Patti Brite Taylor

 

Invisible disabilities rarely announce themselves. They don’t arrive with crutches or casts or the kinds of signals people instantly understand. They hide in plain sight, quietly reshaping everyday life while the world keeps assuming you’re walking around in normal shoes.

But invisible disability is nothing like walking in normal shoes.

If I could explain what living with retinitis pigmentosa (RP) feels like… the narrowing world, the fatigue, the extra effort packed into every simple moment, I would describe it this way:

Imagine that everyone around you is wearing regular sneakers. They walk, skip, turn corners, chase after life without thinking twice. Their feet move without resistance.

Now imagine your shoes look exactly the same… but the soles are coated in invisible super-sticky glue.

Every step takes effort nobody else can see. Every change in direction steals energy no one realizes you spent. You appear to be walking normally, but inside, you’re pulling, lifting, pushing, working far harder than anyone knows. And when you need to slow down or stop, people don’t understand why.

To me, the sticky shoes are RP. They appear as the unseen battles, the effortful navigation, and the fatigue that doesn’t match what the outside world sees.

The shoes stick hardest in the dark. Distance becomes a guess. Depth disappears. Faces fade. Hallways I walked a hundred times suddenly feel like unfamiliar terrain. Yet to everyone else, I “look fine.” My eyes are open. I’m moving forward. How could they know that each step is an internal negotiation?

And then there is the other layer, Charles Bonnet Syndrome, a quiet companion that sometimes adds hallucinations when my brain tries to fill in the blanks my vision can no longer supply. Picture the sticky shoes again, but now imagine the floor beneath you occasionally sprouting shapes or shadows that no one else can see. Not frightening, necessarily… just confusing enough to make you stop mid-step and recalibrate.

RP is not dramatic to the outside world. It’s subtle. Slow. Quiet. And that quietness often becomes its own kind of loneliness.

For decades, I tried to tuck that loneliness into a pocket and keep moving. I loved reading. I loved stories. I loved the escape of a good mystery- the twists, the clues, the courage of heroines who leaped into the unknown. But as my vision narrowed, so did the stories I found that reflected someone like me. Characters with low vision were almost always reduced to their disability: fragile, tragic, dependent.

That was never the story I wanted to tell.

Why I Wrote Lila Jameson Mystery Series

When I decided to write The Vanishing Cactus, I knew two things:

1. I wanted a heroine with vision loss… but not a victim.
2. I wanted young readers with RP or low vision to see themselves as capable, clever, and courageous.

Lila Jameson, my teenage detective, doesn’t just happen to have RP, she lives with it. She adapts. She struggles. She figures things out in her own uniquely brilliant ways. And when Charles Bonnet Syndrome throws her a curveball in the form of a hallucination? She doesn’t crumble. She questions it, navigates it, learns from it, and keeps solving the mystery.

Lila lives in sticky shoes, too.

But she keeps walking forward.

And that is the heart of the series - not inspiration in a grand, sweeping sense, but empowerment in the simple truth that people with low vision and invisible disabilities are already doing hard things every day, often without applause or acknowledgment. Lila is a mirror for kids who rarely get to see themselves as the hero.

She is also the role model I wish younger-me had known existed.

The Weight of Invisible Effort

Some days my sticky shoes barely budge. Some days I glide more easily. But no matter the day, the constant effort of living with RP remains, not in a tragic way, but in a real way. The reality is that invisible disabilities carry invisible exhaustion, invisible adaptation, invisible triumphs.

People may never see the glue on your shoes.

They may not notice the subtle head turns you use to catch a sliver of peripheral vision, or the moments you pause to adjust to light, or the hesitations in dim spaces, or the internal work of sorting hallucination from reality.

But your invisible effort is still effort. Your invisible struggles are still struggles. And your invisible victories are absolutely victories.

What I Hope My Readers Take Away

Through Lila, I want young people, whether they have RP, another disability, or simply feel “different”, to understand:

• Your challenges do not diminish your capability.
• Your adaptations do not diminish your intelligence.
• Your fatigue does not diminish your strength.
• Your disability does not diminish your worth.

And most importantly:

Walking in sticky shoes does not mean you aren't strong.
It means you are strong in ways most people will never understand.

That is what invisible disabilities are: not limitations, but realities. Not weaknesses, but different kinds of endurance. Not the end of a story, but the beginning of a new kind of hero’s journey.

Lila’s adventures continue through the series, and with each mystery she solves, she becomes a fuller representation of what so many of us experience quietly every day: the truth that even when the world cannot see the glue on your shoes, you can still move forward with courage, humor, creativity, and grit.

That is the story I want to give to readers.
And that is the story I want to share with the Foundation Fighting Blindness community, because no one should have to walk in sticky shoes alone.

 

Read more from Patti's The Vanishing Cactus, Book One of the Lila Jameson Mystery Series.