Even to this day, she’ll be standing in a store and someone will approach her, eyes fixed on an indentation circling her arm.
“People will say get the rubber band off your arm,” says the vibrant young woman, now 35, who lives in Newcastle, TN, near the Kentucky border. “I’ve always hated that so bad.”
Until her 20s, the worst thing about her unnamed condition was the embarrassment she felt from probing eyes. In kindergarten, she was shy and cautious about how kids would treat her, “so I stayed back in the shadows and let the other children play.”
Over the years, she learned to fly under the radar by keeping her hands in her pockets and avoided sleeveless shirts and open-toe shoes. Though she had a hard time writing, carrying her books and other activities that required using her hands, she carried on as if nothing was amiss, so she wouldn’t be placed in special classes.
But at 26, trying to pretend everything was okay became unmanageable.
“My hands were hurting me a lot and they were swelling,” she recalls. “I had to find out what was wrong with them.” The pain sent her on a quest to get a diagnosis for the condition that had, in many ways, shaped her life and how she’d lived it.
After years of seeking answers, “a doctor mentioned the idea to me that I might have amniotic band syndrome.” When she read up on it, the disparate pieces began to snap into place.
Amniotic band syndrome (ABS) is a congenital disorder that occurs when fetal parts, including the face, limbs, fingers or toes, get caught in the fibrous amniotic bands of the mother’s womb as the baby develops. It affects about 1 in 1,200 births and its complications are believed to cause about 2 percent of all miscarriages.
Constriction rings around a growing fetus’ limb are not uncommon and in some babies the bands even amputate the limb. When Sullivan learned that she was lucky to have her arm, indentation and all, her paradigm shifted.
“Now I look at that scar and I’m thankful for it; I see myself as a survivor.”
When she was born, her mother’s obstetrician had newborn Candida whisked away. The doctor initially didn’t know how her parents would receive the baby, who didn’t have 10 perfectly formed fingers and toes. The physician later delicately explained to the couple that their little one was born with some challenges and was uncertain how the child would ultimately fare. But their baby girl came through it fine and has lived to tell the tale.
“I never saw it in their eyes that they looked at me differently,” Sullivan recalls of those early years, “nor did they treat me any differently. They never said, ‘You can’t do this or that because of your hands.’ They said, ‘You find your own way to do this or that.’”
When she was about five months old, a surgeon evaluated her for surgery to improve hand function, but decided against it because the prospects for a good outcome were doubtful. There are too many nerves in the hand, he told her parents and their baby girl stood a chance of coming out of the operation worse off than when she went in.
For the next two decades, Sullivan put the matter out of her mind as much as possible, until the pain flared up in her hands and the clues finally led to a diagnosis. Sullivan took to the internet to learn more and discovered a large community of people affected by the condition. Now she’s made friends with others who have it and belongs to organizations of people connected by their common condition.
Sullivan finds some relief at her chiropractor’s office, where he uses ultrasound to combat the swelling and ache in her hands. But that only offers a day or two of relief.
“I’m never really out of pain,” she says, “and it’s gotten worse over time.”
That’s especially challenging because Sullivan works with her hands: Her day job is medical billing and her creative outlet is writing books and blogging.
Her books, Underneath the Scars, Zippy and the Stripes of Courage and Zippy’s Big Difference, all deal with her condition in a meaningful way.
“I knew there was a story in me,” Sullivan says. When she discovered that others had a similar tale to tell, her writing became a form of group therapy. “I found acceptance through writing, especially Zippy’s Big Difference, a children’s book.”
That fear of being shunned on the playground reared its head again as she became a young woman, eager to attract a mate, be married and start a family. She was terrified that she would never find anybody who wouldn’t see her as damaged. Her parents had a great marriage and she hoped to duplicate what they had created except for having a child who had to contend with the challenges of ABS.
When Sullivan met future husband, Shannon, she had a clue that he might be the one because he never stared at her imperfections. He didn’t even mention them and totally won her over the day he kissed her hand.
“He married me without asking me about it, as if he couldn’t see my hands were scarred and we didn’t talk about the ABS until after we were married.”
When Sullivan was pregnant with their first son, Cayden, she was terrified the child would be born with her condition, but her husband didn’t seem the least bit concerned.
He told her not to worry, suggesting that their child would be fine, with or without ABS. His unconditional love helped Sullivan relax.
Though doctors suggested additional testing for the condition, which occurs randomly, the Sullivans declined.
“I didn’t want to know and we figured whatever we’re facing, we’ll face it as a family. I remember very well the day when my son, Cayden (now 13), was born and I saw his hands and his toes and everything was just wonderful.”
Their son, Jordon, now 9, was born without his mother’s condition, as well.
“Underneath the Scars [See below] is the story of my struggles, and everything I went through,” says Sullivan. “I wrote it and Zippy and the Stripes of Courage about a zebra with no stripes—at the same time.” She began both shortly after she was diagnosed.
Initially, she unsuccessfully sought out a publisher and figured she might just have to give her work away to family and friends.
“My books had been rejected so much and I was over it. I put them aside and decided to share my story through a blog, in an attempt to help others. One day I got a message
by Pamela K. Johnson
An excerpt from Underneath the Scars
I didn’t give him enough credit. With every date I figured: This is it. This will be the date he discovers my imperfections and cuts a trail. And then one day, unexpectedly, he picked up my hand, looked at it as if it were beautiful, and kissed it. From that moment on, I wasn’t afraid anymore. He had slain my demons by offering me unconditional love.
I will never forget when he slipped the little velvet box out of his pocket. That night, underneath the stars, he took my hand in his and asked me to be his forever. As he put the diamond ring on my finger, my breath caught in my throat and my eyes filled with tears. Of all the people in the world to love, he chose me. So many times he could have walked away, but he stayed. His love was real; I could see it in his eyes and feel it in his touch.
While I was thankful, in the back of my mind I thought he could do better. He deserved a woman without scars and an unknown diagnosis. The day I took his last name before God, our family and friends, I knew he would enter the ugliness of my life. People would stare at him and wonder what possessed him to marry a woman with scars. I loved him enough to spare him the heartache, but too much to walk away. I tried to convince myself that he would be better off without me, but he wasn’t willing to let me go without a fight.
A year after he asked me to marry him, we took our vows—without him ever asking me about my hands. We had a simple ceremony at my parent’s home with only immediate family. I had dreamed of a big church wedding, but I was so afraid that he would change his mind that I didn’t dare chance it. I couldn’t bear to suffer the humiliation of being left at the altar.
The morning of our wedding, I was so nervous that I paced back and forth, glancing at the clock, counting the minutes until his scheduled arrival. When he walked through the door, wearing the grin that I loved so much, I knew it would all work out.
It’s amazing to me now, 15 years and two beautiful children later, that I ever could have assumed that he would be better off without me. At the time, I felt he had given me everything, and that I had nothing significant to offer him in return.
Over the years, he usually reserves telling me the words in his heart for anniversaries, often giving me a sappy card that confesses his undying love, and I treasure each and every one. However, one year he showed me exactly what was in his heart. If I live to be a hundred, I don’t think he could ever top the Love Plant.
That year, like most, we were really poor. So when he asked me what I wanted, I knew not to ask for anything extravagant. Still, he was determined to get me something. So, I suggested a houseplant.
He worked the nightshift at the time, and that morning when he came home, I walked into the living room to see my gift. He stood there next to it, grinning like he had done something great, while I sighed and tried to fight back tears.
The plant was dying! It was three feet tall with brown leaves lying on the floor around it, and more leaves threatening to fall. I tried to appear grateful, but I was mad. I figured he went into the store, grabbed the plant next to the exit, not bothering to notice that it was hideous.
Then, I felt bad. Maybe he was thinking of our budget, and bought it on clearance. But when I saw the receipt on the counter, I knew he’d paid full price.
“I thought you wanted a plant,” he said, clearly frustrated.
“I wanted one with green, shiny leaves. This one is dead.”
He sat down on the couch and pulled me into his lap.
“All of the other plants were beautiful, and I knew someone would buy them, but this one was dying,” he said. “That’s how I felt before I met you; your love saved me. I thought maybe you could save the plant, too.”
It was one of the sweetest things anyone had ever said to me.
The next day I bought a new pot, transplanted the plant, and gave it time to heal. Soon, bright and shiny leaves began to sprout, and the plant transformed into a thing of beauty, reaching the ceiling—only to be trimmed back several times.
Our plant continues to grow just like our love—strong and beautiful.
courtesy of ShadeTree Publishing
Articles in the Andy Madadian Issue; Senator Harkin — The Deaf President Movemen; Ashley Fiolek — From Pigging Out to Nutrition Classes; Humor — Part II of the “Greek Geek” Adventure; Candida — The Hands She Was Dealt; Derek Paravicini — He’s Got the Keys to the World; Geri Jewell — Next Exit, Joy; Seizure Dog — She Nose When; Long Haul Paul — What the Farkle?; China — Wang Kun Overcoming Obstacles for Art; Sharjah’s — Sheikha Jameela bint Mohammed Al Qasimi; Accountability — Employing People with Disabilities; ANDY — Music + Charity = Millions of Fans; QJMC — Team Quincy Jones Spreading Music’s Roots; Morgan’s Wonderland — An Accessible Fun-der-land; DRLC — The Blame Game in Gun Control ; ABILITY’s Crossword Puzzle; Events and Conferences…