Robyn King never misses an opportunity to watch the sun rise. Despite the chronic 24/7 pain that her body is in, she wakes up bright and early each and every morning.
“That’s my day,” said King, who first spoke with The Times five years ago when she exhibited her work at the Bucks County Visitor Center. “I want it and don’t want to miss a minute of it.”
In our ever-crazy world, as politics, violence and disease rage on, this Bensalem-based artist fiercely focuses on the positive things in life: adventures with her husband, dancing with her great-grandchild, creating captivating works of art and, most importantly, just being alive.
For the past two decades, King has suffered from CRPS (Complex Regional Pain Syndrome), a rare condition often caused by a severe injury that leads to prolonged pain and inflammation.
Not only is King regularly in a state of discomfort, she also suffers from seizures. Unless it’s a grand mal seizure, she doesn’t bother going to the hospital … the beeps from the medical equipment would only trigger another episode. Plus, there’s a chance that the healthcare staff attempting to help her hasn’t heard of CRPS.
In an effort to spread awareness about this incurable disease, King is participating for the first time in a global initiative. The annual Color The World Orange Day took place on Nov. 7, with the public urged to wear the color orange and show it off on social media to educate others about CRPS. King is taking it a step further with an art fundraiser running throughout November, which is CRPS Awareness Month, and concluding on Dec. 1.
“This is something I’ve always been passionate about. I’ve had other fundraisers for it, but never during the fundraising month,” said King, who organized the online gallery in a week. “I populated it with all of my orange artworks. If they had predominantly orange or a good deal of orange, I put them in there. Everything in there is 20 percent off, so it’s like a Black Friday kind of thing. Anybody who buys something in there is also helping people because the money is going toward CRPS research.”
According to RareDiseases.org, CRPS affects almost 200,000 patients annually in the United States. However, unless an immediate loved one is affected by it, many people don’t know much about it.
“It’s still in darkness, like how MS was years ago. I’ve had it for 21 years. It’s a horrible disease, it really is. It has tried to kill me on numerous occasions. I’ve come very close to dying about three or four times now, where my family was very scared. We did not think I was going to make it,” said King.
Her life changed forever while working as a teacher’s aide in a special needs classroom. As she was honing her art and photography craft, it was the perfect gig. However, there were some pupils who had severe emotional issues and didn’t belong in that learning environment. One boy, who King said was 5 feet 3 and about 150 pounds, started beating up a classmate so badly, King thought he’d be killed.
The attacker was pulled off, but his behavior led King to believe he’d attack other kids. So, she stood in front of her students, shielding them from harm’s way. The boy put his head down, stuck out his arms and ran straight into King, slamming directly into her chest.
“I flew across the room and into the stone wall. That’s how I got hurt so bad,” said King, who sustained a concussion and injuries to her neck and back. “The doctor said if I had fallen on the floor, instead of the wall, I don’t think I’d be here talking to you. I would have cracked my head on the floor and I’d be brain dead.”
King was alive and hurting, but the boy’s actions did more harm than anyone initially realized. She wasn’t healing. It wasn’t until 10 months later, when she met the late Dr. Robert J. Schwartzman, that King finally had an answer — she had CRPS, then referred to as Reflex Sympathetic Dystrophy. Schwartzman couldn’t cure it, but he did all in his power to ease her pain, including the administration of new ketamine treatments.
“This man was amazing,” said King. “He was a specialist in RSD. He would go all over the world to train people so they would know how to do it, too. I was lucky to have him for my doctor. And the treatments did help me. There were a couple times I did have remission. It wasn’t long-lived, but I had no pain. You forget what it feels like not to have pain.”
Through her art fundraiser, which features pieces like “In The Morning Light Everything Is Alright” and “Hope,” King wants people to know that CRPS doesn’t discriminate and can happen to anyone. It can be caused by a car accident, heart attack and even blood work if the phlebotomist goes too deep and hurts the nerve. Kids can also have CRPS, though there’s a higher chance for them to go into remission.
“There are so many unanswered questions. That’s why we need the research,” said King. “That’s why I’m so adamant to try to raise money, whatever it is. But I really just want to get the word out.”
King also wants people to know that CRPS hasn’t taken over her life. Not even close. She often wakes up at 3 a.m. and drives to the beach with her husband to snap photos of the sunrise. She even bounced back from a stroke, which temporarily took away her ability to speak and move, all while planning and launching a brand new website for her art.
“I take each day as it comes. I focus on what I can do each day to make it special, make my life special, my family’s life special,” said King. “Each new day is beautiful. I wake up each new day and I’m happy to be here, no matter what’s happening. If you can just hold onto that and look forward, there’s a magic there.”
Visit robynking-art.com/color-my-world-orange to view available pieces. Visit facebook.com/robyn.king.399/ to keep up with King.
Samantha Bambino can be reached at [email protected]
