'There's something bigger in store for me'
Erica Van Zuidam sat in her hospital bed and stared at her hands and feet. The hands that used to hit a volleyball and the feet that used to fly around a track were now black and hard and shriveled. On the last full day that Erica remembered, nearly two months before, she was soaking up the sun at the pool.
Now she was at the University of Chicago hospital, where she was taken June 26 by helicopter from Carle Foundation Hospital in Urbana.
When she awoke there, she couldn't talk because of her tracheotomy, and she didn't remember anything after being taken to the emergency room from her University of Illinois dorm on May 11. The bacterial meningitis she had contracted had caused massive organ failure and clotting of the small blood vessels in her extremities, shutting off the blood flow to them. She was kept sedated and on pain medication while doctors tried to keep her alive.
Dr. James Gregory, medical director of critical care services at Carle, had known from the first days of treating Erica that she would lose her hands and feet. Now that she was awake, she needed to know, too.
The doctors talked to her about her feet, mentioning prosthetics, saying they might be able to save part of her left foot. But they said nothing about her hands. She would ask, they are probably going to be amputated, aren't they?
Her father, Tim, tried to break it to her gradually, maintaining a hopeful tone. They're going to see what they can do, he said, but there is a strong possibility this is the way it's going to go.
Erica Van Zuidam holds one of the 15 pairs of shoes she wears on her prostetic feet. Erica, who admits to a lifelong shoe fetish, laughs as she explains, "My mom jokes that I have more shoes than other people that have feet!" By John Dixon
After a while, Erica knew her hands couldn't be saved.
"I could not wait for that surgery, to get them gone, because I didn't like looking at them anymore," Erica said. "I couldn't stand them.
"I probably always knew in the back of my mind that was what was going to happen. It was scary. I felt trapped in my own body. I was so helpless. I couldn't do anything. I had my hands, but they couldn't move. What was the point of them being there?"
On July 11, surgeons amputated her right foot at midshin, and half of her left foot, including the heel, leaving her with an open wound.
"It was so painful. It hurt worse than the surgery," she said.
One week later, her hands were amputated – her left hand just below the wrist bone and her right hand above it.
Although the doctors tried to save part of her left foot, they told her it would take longer to heal and it would take longer for her to walk on it. Erica agreed it should be removed as well. On July 30, it was amputated at midshin.
"I want to get out of here. Just get this done," Erica told them. "I want to move on. I want to get home."
Erica would sometimes think about running and playing volleyball and all the things she used to do.
"Why am I the only girl out of 40,000 kids to get sick? Why am I the one to have to lose my extremities?" she wondered.
"I'll run and everything again. It will be fine," she said.
The doctors also put a cap on her tracheotomy so she could talk.
"She said 'Hi Mom' for the first time in six, seven weeks. She was sitting up and I couldn't believe what I saw," said Erica's mother, Janice, with tears in her eyes.
"Because I'm a chatterbox," Erica said.
"Then we'd take it away," Tim joked.
"One time I laughed, and it shot out at a nurse. That was kind of funny," Erica said.
That sense of humor helped the whole family deal with Erica's illness and its consequences. They always found things to laugh at, like the man in the next hospital room in Chicago, whom Erica never saw but often heard complaining loudly about every little thing.
After the amputations, Erica could feel what her missing limb should be doing, and she would sometimes tell a family member, "I'm shaking a fist at you."
Later, when she began using a wheelchair, her brother Nathan would threaten to "unplug" her, then switch off the electric wheelchair.
The family's faith also helped.
"I'd pray at night to get through this and not be bitter," Erica said.
She was transferred to the Rehabilitation Institute of Chicago shortly after her surgeries, where she began physical and occupational therapy. She did therapy five to six days a week, alongside many elderly patients who had suffered strokes.
Occupational therapist Kristi Turner began by helping Erica's skin – extremely sensitive after her surgeries – adjust to being touched, first with a cotton ball, then a washcloth and progressively rougher fabrics.
When her skin was ready, Erica began to wear "shrinker" socks, which put consistent pressure on her extremities and help make the limb smaller so it can fit into a prosthetic. She also had to build up tolerance to wearing the liners that would go underneath her prosthetics. They act both as a cushion between her skin and the prosthetics and a compressor to help her arms fit into them.
In occupational therapy, she learned how to shower, get dressed, eat, brush her teeth and do other daily activities. She first used a device that attached to her arm with a band and had a slot to hold an item.
"The day I met Erica was when I stopped sleeping at night," Turner said. "I would wake up in the middle of the night and think, 'Oh, we can try that.' It was a lot of problem-solving and trial and error, and just what she likes, because she has to like it."
Once her scars healed, she was fitted for prosthetics. The learning started all over again. Erica got her left prosthesis first because that arm healed more quickly. It did not bend at the wrist, making eating difficult. Switches on her right prosthetic can make the wrist rotate so it can move up and down or flex toward her for eating or brushing her teeth.
When she first tried to brush her teeth, she couldn't hold the toothbrush at the right angle and she kept dropping it. Finally, she figured out she could bite down on the toothbrush, then grip it again and turn it in her mouth.
The prosthetics have a harness that fits over Erica's shoulders, and she uses her shoulder blades and the position of her arms to control them. When she brings her shoulder blades apart and her arm forward, it exerts pressure that goes through her forearm to open her hook. She brings her arm back closer to her body to close it.
It took a few weeks to get used to the tension and pressure needed. Too little pressure and Erica would drop what she was holding. Too much and she would crush it.
When Erica got her first prosthetic arms, she hated them with a passion. They had big, ugly hands. They were hot and uncomfortable.
She traded them for arms with smaller hooks, but she had a hard time using them. Then she got her current ones, with pointed hooks that could pick up more. But she thought they looked like they hadn't changed in 100 years, and she had trouble getting the harness on properly, so she just didn't wear them.
I thought technology would be more advanced than this, she thought. These are useless to me.
Eventually, though, her arms healed more and the prosthetics weren't so uncomfortable. She had a hole cut for her left wristbone so it wouldn't hurt when she had her prosthetic arm on.
And she got tired of having other people do everything for her.
This is ridiculous, she thought. I'm 19 years old. It's like I'm a baby. I don't want everything being done for me.
She was also impatient to get home, to sleep in her own bed and eat her own food.
"I just needed to get out of there," Erica said. "I was sick of that scene."
As someone who had been very active, she was also impatient to walk.
In physical therapy, she learned to use her prosthetic legs. She also had to learn how to get in and out of bed by herself, on and off the toilet, and in and out of the bathtub.
Her physical therapist, Beth Holland, helped Erica build up her strength with exercises, and regain control of her trunk muscles and her balance. Erica practiced reaching and leaning, first from the edge of her bed and later with her new legs. She practiced standing up from a sitting position – and getting up from a fall.
Then she started walking again, at first with a walker. She started just taking steps forward or backward, using the walker and with Holland holding onto her hips.
Her right leg was stronger because she had the surgery on it three weeks earlier than on her left, and she started walking on it sooner. When she started walking on two legs, she had to learn to keep her hips level and not favor the weaker leg.
"Walking was the hardest," Erica said. "When I first started walking, I'd be pouring with sweat because it took so much out of me. And the balance – oh my gosh, the balance goes, and my hip strength. There's a lot to think about."
But because Erica was strong and healthy before her hospitalization – and because she was determined – she learned quickly, Holland said.
"She pushed herself as hard or harder than I did," Holland said.
"Erica knew from the time she came in that she had a set of goals and wanted to be independent again. There were daily frustrations that she had, but she did not lose sight of the goal that she really wanted to be functioning like she was before. That helped her recover pretty quickly. She had a very positive outlook."
Turner agreed.
"I think she dealt with everything remarkably, better than I could expect," Turner said. "I was really shocked at how well she did and how well she adapted."
Erica and Turner went on outings to practice her skills – for example, ordering a meal and eating at McDonald's. Going out in the community is often very difficult for her patients, Turner said, but not for Erica.
"She didn't care if people stopped and looked at her," Turner said. "She'd answer anybody's questions."
Children were the most likely to ask Erica about her arms and legs.
"I think people wonder why I have prosthetics," Erica said. "I'd rather they just ask."
Erica went home Sept. 8, a week before her 20th birthday. Two days after she got home, she went back to her church for the first time. Word had spread she would be there, and when she walked in using her walker, the congregation stood and applauded, as her family cried.
It was at home that Erica perfected using her new arms.
"You figure things out, and it's all like second nature now to do things how I do them," Erica said.
"Now everything is much less frustrating. When I started therapy, I got annoyed with things because I couldn't do them right away. I couldn't figure out how to brush my teeth for the life of me, and now it's so stinkin' easy."
There are still some things she can't do herself, though. She can't put on the liner that goes underneath her prosthetic legs. She can't open twist-top jars, screw-on lids or doorknobs.
"I miss my hands more than my legs," Erica said. "It's the little things. Putting my hair up in a ponytail or when I want to write faster."
Some engineering students at Northwestern University are trying to figure out a tool that can help her get her hair in a ponytail.
"I'm not going to cut my hair – I'm just not going to – so they're going to have to figure something out," Erica said. "Other than that, I'm very independent.
"I drive, I shower, I get dressed, I put on my makeup, all on my own."
She uses pump bottles for soap and shampoo, a higher toilet seat and a hand-held showerhead. She's made adjustments in how she dresses. She wears a belt with her jeans rather than button them. She often wears tank tops with built-in bras, and she pulls them up over her legs to keep them from bunching up as she puts them on.
She has a smaller steering wheel on her Hyundai Santa Fe so it is easier to turn, and it has a ring for the hook on her prosthetic arm. She has a lever on her key to help her turn it.
Her left leg sometimes gets sore if she walks for a long time, so she'll take breaks or use her wheelchair.
Although Erica has the smallest wheelchair she could find, it has still put gouges in the bathroom door frame in her family's house. Tim and Janice are building a new house that is completely accessible.
Erica is hoping for insurance approval to get a set of myoelectric hands, which look like hands rather than hooks and are operated by electrical impulses from her muscles. They have a better grip than the hooks and would allow her to do some of the things she can't do now.
She is also waiting for approval for new legs, which will look nicer and have a suction-type attachment that will keep a better fit as her legs change – for instance, if they swell.
She is keeping an eye on improvements in prosthetics and developments in hand transplants, and she says she'll run a marathon someday.
A confessed shoe addict, Erica has a closet full of shoes that she can wear with her prosthetic legs. The heels can't be too high or the soles too flat, or the shoes will put her body at an awkward angle. She was excited recently to find a pair of flip-flops that worked with her legs.
"My mom jokes that I have more shoes than other people who have feet," she said.
Erica is taking an online social psychology class from the UI now, and she'll be back on campus this fall. She is changing her major from math to kinesiology, and she plans to be an occupational therapist.
Erica enjoyed working with Turner, who became a friend, but she thinks patients could relate better to someone who has been through what they are experiencing.
"There were times when I got frustrated, (and told Turner), 'You don't understand. You have hands,' " she said. "She understood that, too. She was really great, but I think (patients) would take to me. Maybe it would help them be patient."
When she returns to campus, Erica will live in an accessible room at Illini Tower. The UI's Division of Disability Resources and Educational Services will put her textbooks on computer and give her carbon paper so she can easily get copies of classmates' notes.
Nathan graduates from the UI next weekend with a degree in architecture, and he'll also be back in the fall for graduate school.
"I'll be the one to help her out whenever she needs it," he said, adding that being close to his sister was a big factor in deciding to continue his education at the UI.
Erica was back at Carle in October to see the people who cared for her, even though she doesn't remember them.
"I felt really bad," she said. "People are sick and here we are, hanging out, reuniting, having some cookies. It's like I'm famous."
It was the first chance for her doctors and nurses to see her conscious and moving around, to hear her talk and get to know her personality.
Gregory was amazed to see her walk into the intensive care unit, moving easily with her artificial limbs and happy to be alive. He felt as though he and his colleagues had given Erica her life back.
One of Erica's nurses, Beth Grammer, had mixed feelings about seeing her again.
"I really wanted to see her, but I thought, if I look in her eyes and she's not happy, I would feel like I was part of that," Grammer said. "But she wasn't. She was just a bright ray of sunshine and laughing and smiling. Her attitude was amazing. She just blew me away.
"There are certain people you never forget. She was one of these people. You try not to take it home with you, but I cried about Erica. I'd go home and think, are we doing the right thing? She kept me up a few nights."
Erica's family is also amazed at how she dealt with her disease and its consequences.
Pink scars are still visible on her arms and legs, but they are fading with time. Other changes in her life, and that of her family, are deeper than her scars.
Erica's illness caused a lot of stress, as her family worried about how she would recover and watched the medical bills pile up. But Janice could see the deep love Nathan and Erica's younger sister, Jamie, had for Erica.
Jamie said she and Erica bickered often before her illness, mostly when Jamie took Erica's makeup. But what might have happened is always in the back of Jamie's mind now, and sometimes her throat will tighten up as she thinks about it.
"If I ever get down, I just think how Erica's life was spared and she's still with us," she said.
Jamie was eager to help her sister when she came home, often doing her hair. Now, as Erica has become more independent, Jamie said she treats Erica "like a normal person."
Tim tries to put a protective bubble around his family and not let anyone get in the way of their time together.
"Just try it," he said.
Janice feels she has been tested as a Christian, and she's learned to trust and have faith that things will work out.
The family has been amazed by the support of their friends and their church. They were supplied with meals all last summer for Nathan and Jamie, and more than once they found anonymous donations of money in their mailbox. A youth group at their church raised $1,000 for medical expenses by selling peanut brittle.
"If you're having a really bad day and you're really low, they come to the door with this gift, and it's like, 'Wow,' " Janice said.
Erica's illness left Nathan with many unanswered questions.
"It makes you question everything you believe in," he said. "You come back to 'why,' and there's no answer. Why could this happen? How could this happen? Is there a reason for this? I just go back and forth and get nowhere.
"I question myself a lot more, but I still believe."
But he said Erica's illness has changed his priorities and he now puts his relationships, especially with his sisters, above everything else.
"(Erica) could have been gone, so I try to make the most of every moment," Nathan said. "I love the time I'm with her. It seems like it's so much more meaningful now."
Erica said her faith is stronger than ever.
"Now that this happened to me, it's nothing short of a miracle that I'm walking and breathing and there is nothing wrong with me internally," she said.
"A big part of my getting better is being a Christian, and the power of prayer," Erica said. "That's a huge part of me still being alive.
"Maybe it's why I got it. There's something bigger in store for me."
Sometimes she asks herself, Why would (God) want this for me? Why should I have to go through this pain and suffering?
"But at the same time, He feels I can overcome this and surpass it," Erica said. "I feel kind of special and chosen."
One of her favorite passages of scripture is Philippians 4:13: "I can do all things through Christ which strengthens me."
"That's why I'm able to be content with what I have and how I am, and I'm looking forward to things down the road," she said. "I see things in a different perspective. You don't want to take life for granted."
