Skating Through Fire: Living Creatively with CRPS

Hi, I’m Kerry — a stubbornly creative girl living with CRPS.
Unfamiliar with CRPS? Let me pull you into my world, share my experiences, and — fingers crossed — inspire you to believe that anything is possible; it just hasn’t been discovered yet.

CRPS, or Complex Regional Pain Syndrome, is anything but sunshine and rainbows.
Often called the “suicide disease,” CRPS is linked to extremely high rates of suicidal thoughts and attempts. The intense, chronic pain and psychological toll can devastate mental health. Studies show nearly 50% of CRPS patients experience suicidal thoughts, and over 15% have attempted suicide.

How did I end up with this condition? Sadly, it doesn’t take much — a minor injury, stroke, heart attack, or surgery can set it off. In my case, nearly 20 surgical procedures caused nerve damage, opening the door to a life I didn’t see coming.

Everyone’s CRPS experience is different, but here’s mine.

Over the years, I’ve had surgeries on both feet and ankles, both arms, a wrist, my face, and two spinal fusions. I wasn’t in a car accident; things started gradually. My body gave me hints: spasticity, rigidity, involuntary upper body movements (known as cervical dystonia), and foot drop — imagine your foot twisting outward and dragging along, like a zombie in Thriller. That was me: awkward, limping, barely moving.

The surgeries helped restore some function, but CRPS brought waves of pain, frustration, and mental health struggles. About every week or so, I experience flare-ups lasting 4–6 days. During these, I can’t stand, walk, or even wear shoes or socks because of the extreme swelling. The pain is so severe I’ve screamed, “Just cut off my legs!” Even the lightest touch feels like fire. My skin changes color and texture, and alongside the physical pain comes crushing guilt — feeling like I can’t be the productive, contributing person I want to be.

My hands are also affected; the fourth and fifth fingers curl inward, making it impossible to fully open my hands. Atrophy sets in fast when muscles go unused. Simple tasks become battles: turning door knobs, holding a spoon, brushing my teeth — things most people do without thinking. Sometimes I can’t even hold a toothbrush without looking like I’m foaming at the mouth.

CRPS affects more than just comfort; it hijacks my body’s temperature control. I can have a burning red face and ice-cold fingers at the same time. I try to laugh where I can — I’ll press my cold fingers to my hot face for some makeshift relief.

For years, I was told what I’d never do again. I felt completely alone. Despite being married, I had no one to help me navigate the emotional weight of it all. I’m too stubborn to ask for help — I felt like a burden, dependent on others, losing my sense of independence and confidence.

But deep down, I couldn’t accept defeat. I wasn’t going to let my love of music, art, and life fade away while I wasted on the couch watching daytime TV.

Step by step, I pushed myself. I learned that when I listen to music, I walk better; when I sing, I don’t stutter. I focused on alternative therapies that might help, even if others didn’t share my exact condition — because shared struggles connect us.

Now, let’s fast forward to the surprising hero of my story: roller skates.

Growing up, I did it all — soccer, softball, ballet, tap, acrobatics, gymnastics, cheerleading, kickboxing. I lived in a town where the skating rink was the place to hang out. I had birthday parties there, even went on my first middle school date there. I remember the year my dad bought me purple-and-white skates — I used to skate up and down the hallways of his high-rise apartment.

Fast forward to my 30s: epilepsy, dystonia, fused ankles, difficulty walking, running no longer an option. One day, I stumbled on Instagram videos of a friend jam skating. Her skills were amazing, but what grabbed me was her skates: a pair of teal Moxi Lollys — my favorite color.

Excitedly, I told my mom and husband I wanted to try skating again. Their response? “That’s a terrible idea for someone in your condition, with all your surgeries, movement disorder, and seizures.”

My mindset? Don’t tell me what I can’t do. My husband knows the look I get — the one that says, Just watch me.

No, I wasn’t instantly graceful. I held onto my husband the first couple of days. But within a week, my mom saw me skate down the road and spin around. Tears filled her eyes — she saw the freedom I felt.

I can’t bend my ankles. I can’t walk without pain or exhaustion, especially during flare-ups. But on skates, I’m free. I call them my “wheelchairs for my feet.”

What I’ve gained is priceless. I rebuilt muscle that had atrophied after years in a wheelchair. I lost 85 pounds gained from immobility. Most importantly, I reclaimed joy, peace, and a sense of freedom.

Sure, like Cinderella, when the skates come off, I’m back to limping and pain. But skating has been my saving grace, keeping me mentally grounded.

For you, it might not be skating — maybe it’s painting, writing, music, anything that sparks joy.

If not now, then when?