Disability Pride: Through the Kaleidoscope
Stepping Into the Frame
A few months ago, I received a unique invitation: would Cadey and I like to participate in a Disability Pride project?
We said yes, with the blessing of PADS and a borrowed vest for the day. And just like that, we stepped into a beautiful little world crafted by Tilly Nelson—a world filled with colour, light, and quiet understanding.
Yes, there was a makeup artist and wardrobe stylist. Yes, Cadey absolutely was given colour coordinated accessories. Yes, the camera part was a little out of my comfort zone.
But what struck me most was the kaleidoscope of humanity that unfolded in that studio. Seven strangers, all carrying their own fragments of struggle, came together to reflect something whole. Something luminous.
We weren’t there to be pitied or perfected. We were there to be seen.
Photo Credit: Tilly Nelson
Cadey, My Mirror
Photo Credit: Tilly Nelson
Cadey took it all in stride, raising a questioning eyebrow when I pulled out a PADS vest.provided for the day. A cascade of colour and memories washed over me... and in turn her. She tolerated a bath the night before, posed like the supermodel she is, and basked in attention the rest of the time. Tilly even sacrificed her banana to keep the “retired princess” engaged. Cadey is the girl who just shows up and says "YES":
She’s my anchor, my compass, and my most honest reflection.
The Shattering Years
Doctors couldn’t find a name for what was happening. Eventually, they labeled it fibromyalgia—delivered with clinical indifference:
“It won’t kill you. There’s no cure. It’ll probably get worse.”
The diagnosis felt like a dead end. But I refused to let it define the shape of my life. I refused to accept the prognosis of quitting the job I loved. My complex disease specialist told me she wanted to bottle my grit for her other patients.
Because I chose hope, in whatever form it took.
That said, I resisted the idea of using a wheelchair for years. But the day I rolled down a forest path in Pete with Cadey beside me, I broke into tears. It was freedom. A new pattern in the glass.
As an ambulatory wheelchair user, I gained independence but lost invisibility. People heckled me in parking lots - saying I was faking because I got out of the chair to load it into the SUV. Friends made choices on my behalf, my autonomy felt shattered... and needed to be pieced back together - with love on both sides.
I learned how easily the world flattens complexity into something it thinks it understands.
Retiring Gold: When the Brightest Piece Left the Frame
In November of 2023, Matthew had to wheel me into the ER because I couldn’t breathe without pain searing through every fibre of my being. Morphine didn’t even touch it. The doctors were baffled.
But my complex disease specialist? She was thrilled.
Because finally, we had a clue.
The way my body responded (or didn’t) helped her crack the code. After nearly a decade, fibromyalgia was tossed aside, and a new, more accurate diagnosis took it's place.
A diagnosis with a treatment. With treatment and proper care, everything changed. I could walk Costco aisles. I could hike. I could dance. I could walk down the hall to my own bed at night instead of often being stranded in a living room chair.
It was like the lens had shifted again—and suddenly the pattern held endless shimmers of light.
The Most Frightening Piece: Hope
Because recovery invites hope—and hope is one of the most vulnerable, terrifying emotions we have.
To hope is to imagine scuba diving again. To travel solo. To visit the Machu Pichu. To plan an afternoon hike with your family and not worry that your body will give out or that you'll be housebound for a week.
Hope is fragile. But it’s also where the light gets in.
The Kaleidoscope Turns Again
This spring, my health took another turn. A few cranks of the tumbler later and here I am -- back in the waiting—back in the not-knowing. But I’ve learned something over these past ten years:
Disability isn’t a before-and-after story. It’s not a broken-to-healed narrative.
It’s a kaleidoscope—always shifting. Always surprising. Sometimes it makes you dizzy. But when you stop and look closely, it’s still so beautiful. It still holds light and optimism, even in the darkness.
Why Disability Pride Matters
It’s about being seen as whole—even when the pieces don’t fit the way they used to. It’s about challenging the hecklers who think pain only counts if it’s visible. It's about standing up and saying enough when people around you invent harmful narratives.
A fellow “spoony” once said: “I’m not faking being sick. I’m just really good at faking being well.”
That stuck with me. Because invisible disability is a masterclass in performance (and usually it shows up without a makeup artist and stylist!).
Photo Credit: Tilly Nelson
What I Know Now
I am strong.
I am worthy of love.
I am worthy of respect.
I am gritty.
I am frustrated.
I am hopeful.
I can ask for and accept help.
I am still turning toward the light.
And thanks to Tilly and her team, I am reminded: I am not alone.
We are not broken.
We are kaleidoscopes—fractured and brilliant and endlessly resilient.
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