"Some women are lost in the fire. Some women are built from it."
—Michelle K.
The Fire Within Blog
Through the Looking Glass

I recently received the bittersweet gift of seeing myself 30+ years ago, but in a world that understood CRPS – offering boundless opportunities.

Last weekend I visited my favorite clothes store Anthropologie with my annual birthday gift card in hand. Never fails, at Anthro I always find something fun and pretty to wear and I leave beaming.

I quickly spotted an adorable pink poodle skirt with grey leather poka-dots. Unfortunately the sweet sweater hanging with it did just that – hung there on my body, limp and formless. The dressing room woman offered alternative tops, but nothing worked.

Out of luck and low on spirit, John wheeled me for the store’s exit. That’s when I caught a young saleswoman out of the corner of my eye. I told John to stop. Not knowing why, I had to stare. I just had to meet her. I forced an embarrassed John to wheel me in her direction – and basically yelped out, “Excuse me, ma’am, can you help me please?”

Kiera and I immediately hit it off as she loved the skirt and quickly rounded up some creative tops and belts. Everything she chose and wore hinted ballerina. Excited by her taste, I mentioned being a former ballerina. Kiera’s eyes lit up.

Ends up she’d danced professionally with the Cleveland Ballet. But at age 21, she went on to explain, she’d suffered a serious ballet injury that – and here’s the kicker – triggered CRPS! I blurted out, “I’ve had CRPS for 33 years!” Both of our jaws dropped.

When Kiera and I came to, we spoke a mile a minute. As her hands trembled, my fingernails dug into my palm drawing blood. Our stories were exactly alike (21 years old, ballet injury in the right leg, triggering CRPS.) And it got curiouser and curiouser.

Not only were we both athletes, but like so many of us women in pain, Kiera had been deeply traumatized early in life. So much so that she became the family’s “parentified child.” Also classic was Kiera’s over-achieving triple-A personality, her anxiety disorder and former battle with Anorexia. All that and she sustained the injury (one of many) that sparked CRPS at an extremely stressful time in her life.

This meeting solidified for me the thinking that we women who contract auto-immune diseases have extremely similar personalities and early life experiences – and somehow this combination alters and sets up our chemistry for chronic pain and fatigue disorders later in life. I’m excited that researchers are studying this correlation – and perhaps one day we’ll learn that certain personality profiles are indeed high-risk. As such, doctors will be on their toes for early signs and symptoms… and ultimately a cure.

Speaking of, due to For Grace’s awareness-generating media outreach, Kiera’s doctors caught and treated her CRPS early and aggressively. As a result, she’s been in full remission for four years. That’s what really floored me. This woman literally walked away from full-blown CRPS!

When I got out of my wheelchair to embrace Kiera, I didn’t think she was going to let me go. I felt the thank you in her hug. I felt her gratitude for being one of the lucky ones.

My dream is that someday with research and awareness tucked into a bit of grace, each short term sister in pain will skip away – and even fly…

XO Cynthia