Amy Koplin never thought she’d walk down the aisle after an accident left her with serious injuries. But on Jan. 11, she defied the odds.
“She wanted me and my husband to walk halfway down by ourselves and then wait for her,” said Amy’s mother Charlene. “She wanted a moment for herself. She came down by herself halfway and we took her the rest of the way.”
The way Amy wanted to walk down the aisle was a no-brainer for her. “I knew I wanted that one moment that I walked by myself. … I just thought kind of standing on my own would be something special for me.”
Six years ago, Amy was hit by a bus in Chicago, leaving her feet crushed. It was unclear whether she’d ever be able to walk again. Her bones healed, but Amy remained in excruciating pain months later, her mother said.
She was diagnosed with a condition called Complex Regional Pain Syndrome, or CRPS. This disease causes extreme pain in her feet from the accident along with other issues such as swelling and discoloration. This disease, which is still being studied, means that medical visits and pain are a regular part of Amy’s daily life.
“They say on a scale of 1 to 10 it’s worse than amputation,” Charlene said. “She’s been through ketamine infusions, spinal stimulators. She’s been through the gamut.”
Walking down the aisle was not easy, Amy said. Though she smiled joyously through the wedding and reception, behind the scenes she was struggling. She had to take multiple breaks throughout the night. “This disease is called an invisible illness and also a suicide disease,” Amy said. “No one knows about it. It’s the most painful disease ever but no one will actually believe that, because everyone looks fine.”
This makes it difficult for her to be an advocate for CRPS, she said. She
hoped her wedding would open people’s eyes to how scary CRPS is. “I shouldn’t have even found love,” Amy said. “It’s very rare for someone with my disease to find someone who understands so much.”
That moment when Amy stood and walked down the aisle was poignant for Charlene. “I can’t describe what it was like. So many things had come true,” she said, her voice full of emotion. “It went by too fast. I just kept thinking how beautiful she was and how far she had come. She still has her struggles. People think by looking at her ‘oh, she’s beautiful and there must not be anything wrong with her.’ It’s called an invisible disease. But she suffers.”
Amy even got some backlash for sitting under the chuppah rather than standing from people who don’t understand CRPS, but she didn’t want to collapse in the middle of the ceremony. She said: “I can’t stand for more than 10 or 15 minutes or I’ll fall. And I did not want people to see that.” There were no heels involved in this wedding; instead, Amy wore sneakers all night. She took multiple breaks when she felt she needed to rest, and at some points she had to fan herself because her dress was so heavy. There was a time when she had to lie on the ground and put her feet up on the wall.
One of the other diseases she has, called mast cell activation, causes a response similar to an allergic reaction and her body temperature to run hot. “It’s why I wanted sleeves on my dress because I was so embarrassed if I activated that night how I’d look,” Amy said. She emphasizes the importance of spreading awareness about CRPS, because with this “invisible illness” also comes a stigma and an ignorance around what people with the conditions suffer through. “You can see the pictures, how happy I am, I’m surrounded by my best friends. People did not show up who I thought were my friends and that was really hurtful,” Amy said.
As an advocate for CRPS, Amy has discovered who her true friends are. “There is a community out there of people who do understand. It’s just about finding those people and keeping those people around.”
She met her husband, Tom Miller, at a friend’s engagement party in Chicago. “There he was, like, dancing on a couch, and I’m not in heels and I didn’t look cute,” she said. But the two of them connected and fell in love.
Charlene described Tom as very patient. “I knew from the moment I met him that he was going to be her husband,” she said. CRPS makes it difficult to be in a relationship with the other person, as “it’s a lot for the other person to put up with,” Charlene said. “It’s a lot. He is a good man. He loves her. That’s true love.”
The wedding theme was “a sky full of stars,” inspired by another wedding Amy had seen. “Everything about this wedding was perfect,” she said. “If [my wedding] could be my sky full of stars that would be my dream.”
Amy said she is very artistic, which makes having CRPS even more challenging for her as she can’t physically do all the creative things she would like. Luckily her wedding planner, Amy Ackerman, and her designer, Jim White, understood exactly what she wanted and pulled off her dream. With lights coming down from the ceiling, the wedding was “just magical,” Charlene said.
Of her daughter, Charlene said, “She’s had a lot of ups and downs. We wanted to make her wedding really special, not only because she’s my only daughter but because she’s come a long way. Because I really never thought she’d walk again but she walked down the aisle.”