Vol. 25 • Issue 17 • Page 14
"There's something wrong. I don't know what it is."
That was all Erica Van Zuidam could tell her parents when she called from Carle Foundation Hospital in Champaign, IL, in May 2005. She was then a freshman at the University of Illinois (U of I), studying to be a high-school math teacher. Earlier in the day she had thought she had the flu.
"I had a really bad headache. I went home in the afternoon and it was progressively getting worse and led into the middle of the night. I woke up, and I was throwing up. I couldn't stop. I had the chills, then I was hot," Van Zuidam described. "When I saw the purple spots on my skin, my friends took me to the emergency room. [The spots] were everywhere."
Van Zuidam had bacterial meningitis, an illness that will affect her for the rest of her life though it left her body shortly after she contracted it in 2005.
Fighting for Her Life
Bacterial meningitis is considered more severe than the viral form of the disease, according to the Centers for Disease Control and Prevention (CDC). Onset can be sudden or occur over several days and
will at first appear similar to viral meningitis. It is the later symptoms-seizures, coma, etc.-that make bacterial meningitis the more severe form.
While viral meningitis often resolves itself without treatment, bacterial meningitis, if not caught quickly, can lead to brain damage, hearing loss, limb amputation or learning disabilities. Bacterial meningitis can kill, though with proper antibiotic treatment for most types, the risk is less than 15 percent, according to the CDC.
When Van Zuidam arrived at the emergency department, she was already experiencing a petechial rash, which the CDC describes as a symptom of the later stages of one of the more dangerous and deadly strains of meningitis. A petechial rash manifests as small purplish spots caused by minute hemorrhages.
Van Zuidam said the doctors and nurses seemed to know immediately that she had a form of meningitis, or at least a very serious condition, as they saw and admitted her quickly.
"I guess they did the spinal tap in the emergency room, but I honestly don't remember," she said. "I was in a lot of pain. I couldn't stand up straight because my stomach hurt so bad. They took me instantly; I remember calling my mom and dad. They came down as soon as they could, but I don't even remember seeing them, because [the doctors] put me under right away."
Van Zuidam remained in an induced coma for nearly 7 weeks, during which she was transferred to the University of Chicago Medical Center. There she was awakened from her coma and faced with the harsh aftermath of her illness. On July 11, Van Zuidam's right leg and part of her left leg were amputated. On July 18, both of her arms were amputated below the elbow; and on July 29 the remainder of her left leg below the knee was removed.
"It wasn't a surprise; my hands and feet were black. The tissue was dead. It was upsetting, but at the same time, I wanted to move on, and I knew that's what had to be done," Van Zuidam said of the amputations.
Toward the end of July 2005, Van Zuidam was transferred to the Rehabilitation Institute of Chicago (RIC), returning briefly to the University of Chicago hospital for her third amputation.
She stayed at RIC until September for daily doses of physical and occupational therapy. Her therapist Kristi Turner, OTR/L, CKATP, MSCS, program specialist for RIC's 6 Floor general rehabilitation program, said Erica was a first for the staff at RIC.
"Because our floor is general, we get a little bit of everything diagnosis-wise," Turner explained. "But [Van Zuidam] was one of the first multiple-amputees that we've had, at least in the past 6 years."
Working with Van Zuidam who had lost all four limbs was a challenge for the therapy staff. Their first task was helping her to function without prosthetics. They spent several days constructing devices that would help her with basic hygiene-brushing her hair, brushing her teeth, toileting-and other ADLs and IADLs.
"One of the very first things we worked on was setting up a speaker phone so she could make a phone call," Turner said.
"At the beginning her skin was very compromised-there were a lot of open areas-so we had to be careful with what equipment we could put on her to make sure we weren't opening areas up, and obviously pain was a factor as well. We were still working on just balance, endurance and strength too," she added.
It seemed almost as soon as the pair had worked out how Van Zuidam would maneuver without prosthetics, she received her first one: her right leg, which was followed by her left arm, her right arm and her left leg.
With each new prosthetic, Van Zuidam had to relearn the skills she had just mastered, Turner said. "When the prosthetics came, the basic thing first was just learning how to take them on and off. She was only fitted with one extremity at a time, so we had to learn to take that one on and off by itself. And then when the other one was ready she had to learn how to put them both on, because the harness system is different between the two."
Modifying and creating adaptive devices was a large part of Van Zuidam's rehabilitation. Turner lengthened silverware, and modified the wash mitt and the bath aid; she adapted the u-cuff to fit around Van Zuidam's arm and did whatever she could to help Van Zuidam regain control of the skills the amputations had cost her.
"It was really just me kind of problem solving out what might work and trying out and talking to Erica about it: 'Here's what I'm thinking; what do you think about trying this?' I was gluing and taping things constantly to see if it would work before we'd get to make more of a completed version," Turner remembered.
Fortunately, Van Zuidam willingly tried everything Turner presented to her. "I was anxious to do things on my own," she said. "I was 19 years old. I didn't want to have to rely on my mom to bathe and dress me.
"And at first, I couldn't do anything by myself. So everything I did was a huge accomplishment."
On September 8, Van Zuidam returned home, leaving RIC as an inpatient, though she would continue receiving outpatient therapy for several more months. Through the winter, she continued to work with her PT to become stronger and more able at tasks such as walking, she said.
But the spring and upcoming fall were on the horizon, and Van Zuidam's vision for herself included returning to college. "I was still enrolled at U of I," she told ADVANCE. "They had me as kind of a frozen spot. They told me to come back when I was ready."
Ready came in August 2006 when she moved back to Champaign to officially begin her sophomore year of college. But her goal was no longer to become a high-school math teacher; instead, it was to become an occupational therapist.
"Going through my therapy, I realized how I really like what [OTs] do for people," she said. "When I was in rehab there was another girl who was an amputee and we would kind of talk with each other about [our recovery and adaptations]. it made me want to work with people with physical disabilities and show them firsthand you can achieve this and there is a light at the end of the tunnel."
According to Van Zuidam, the return to school was not particularly difficult. The toughest part, she said, was finding a place to live.
"I couldn't have just gone anywhere. In the morning, I'm in a small electric chair before I put my legs on, so I needed room for it to get around. I needed a place that had an elevator, and I needed a place that I could maneuver." She found an apartment-style private dorm that she shared with two other girls. The owners of the building made adjustments to the cabinets, door knobs and faucets so Van Zuidam could use them.
On campus, Van Zuidam encountered few problems. "It was a little tough getting into every building, but it wasn't nearly as bad as I thought it was going to be. U of I was very accommodating for people with disabilities," she described.
Teachers often provided copies of the notes for Van Zuidam, and for the most part, her fellow students treated her as if nothing was different, though there were the occasional disparaging remarks.
"On campus she had a couple of incidents," said Mary Carlton, PhD, professor in the department of kinesiology at U of I.
"For example in her apartment, they had this rule where if you live on the first or second floor you were supposed to take the stairs and not the elevator. She can't manipulate certain kinds of stairs very well, so she always took the elevator. People made ugly comments and during the winter she had long pants on-if you look at her you'd never know she didn't have legs beneath the knees-so she pulled up her pants and said, 'I have a problem manipulating the stairs, thank you very much.'
"She deals with things pretty well," Carlton continued. "But does she get her feelings hurt sometimes? Yeah."
The Road Ahead
Van Zuidam graduated from the University of Illinois this past May and started graduate occupational therapy classes at Rush University in Chicago shortly afterward. She told ADVANCE she is looking forward to her clinicals and determining what area of OT she'd like to be her focus.
"I would love to work with people with prosthetics. but truthfully I'm very open-minded right now," she said. "I would ultimately like to become a teacher still-an OT teacher."
Whichever OT path Van Zuidam chooses, she believes her physical disability will help her connect with patients rather than create obstacles for her. Turner and Carlton, both of whom are still in touch with Van Zuidam, agree.
"She came to observe [at RIC]," Turner said. "And all the patients, they were so impressed with her. She'll be absolutely fine. She'll problem solve to find ways around any barriers she has.
"We talked about her specializing in prosthetics. She has a lot of potential to teach someone how to do some of their ADLs a lot quicker, because she has the same thing they would have."
"It's Erica," Carlton said. "Erica would have done great things in life with or without her limbs. This just gave her a different perspective on life. She has the basic character of being a fighter, a survivor, and that's why she survived it. Erica wants just to be Erica. And in her mind, everybody, all college students, are survivors. She just had one more mountain to climb."
Sue Coyle is ADVANCE assistant editor.