The Gift of an Everyday Task
After giving birth to her second daughter, on August 9, 2007, Monica Jorge began experiencing severe abdominal pain and a fever. She didn’t know it at the time, but a flesh-eating bacteria was attacking her body.
Doctors call the terrifying condition necrotizing fasciitis. It is caused by a rare and severe strain of group A streptococcus, which ordinarily causes strep throat. Jorge was airlifted to Massachusetts General Hospital, where they found the deadly infection. (Her newborn daughter, Sofia Maria, turned out to be fine.)
The diagnosis is a swift death sentence for 80 percent of victims. At Mass General, surgeons labored heroically over Jorge for days and had to remove her uterus and ovaries, her gall bladder, and a portion of her colon. At last they prevailed, cutting away all the bacteria and saving the 35-year-old’s life.
But there was more surgery ahead. The tissue-killing disease had exacted a nightmarish toll: all four of Jorge’s limbs were dead below the joints, where they would have to be amputated.
By the time Jorge reached Spaulding Rehabilitation Hospital—a short distance from Mass General—she had been away from her baby for nearly three months, except for a few too-short visits, at a time when most mothers expect to be nursing or otherwise caring for their infants. Monica Jorge wanted nothing more than to get home to her husband and her two girls. But first, she had to learn how to care for herself.
In large part, that job fell to Marissa Zona Osborne ’06. Barely a year out of Ithaca College, Osborne was the occupational therapist at Spaulding tasked with teaching Jorge to use her upper arms.
Being a Mother Again
The chance to solve rehabilitation challenges drew Osborne to occupational therapy—and to Ithaca’s widely respected bachelor’s/master’s program in OT. She finished in August 2006 and was quickly hired on Spaulding’s orthopedic trauma floor, where she works with patients with musculoskeletal problems—such as those recovering from fractures or joint replacements—as well as burn victims and amputees—though most have lost “only” one limb.
Although there is a lot of overlap and collaboration, broadly speaking, physical therapists help patients regain movement, such as walking, while occupational therapists help them relearn everyday tasks—getting in and out of bed, bathing, dressing, cooking, eating. The goal is for patients to regain independence in the real world.
For Jorge, that meant being a mother again. “Marissa knew that was something I wanted more than anything,” Jorge says. “To find some way to bond with my baby. Because she watched me with my older daughter [Madalyn, then 9] and knew how I was with her—and she knew I wanted that kind of bond with my baby.”
So in addition to tirelessly coaching her in showering, brushing her teeth, and other tasks to prepare her “to return to life as normally as I could possibly get,” Jorge says, Osborne also had her practice diapering and carrying a Cabbage Patch doll they called Baby Ruben.
For many tasks, Jorge was more comfortable using her extant arms rather than the prostheses. She especially disliked the thought of operating cold metal hooks near her squirming baby, such as while trying to feed her. So Osborne rigged up a unique device using two orthotic straps, called universal cuffs, attaching one to Jorge’s arm and another to a bottle.
On a weekend in early December, Monica’s husband, Tony Jorge, brought Madalyn and four-month-old Sofia for a visit. He placed the baby on her mother’s lap. And mother fed baby a bottle.
Two defining moments stand out for Monica Jorge from her two and a half months at Spaulding. One was when she stood on her prosthetic legs for the first time. The other was feeding her daughter for the first time. “That was a moment I never thought I’d see,” she says, “and Marissa made that happen.”
When Jorge told Osborne the news the following Monday, “We both cried!” Osborne recalls. “It’s so rewarding to see anyone achieve their goals, and especially someone like Monica, who has so much to overcome.”
Determined to Prove Him Wrong
This winter, Osborne worked with Will Lautzenheiser, another quadruple amputee, also a survivor of necrotizing fasciitis. The 37-year-old went into the hospital with severe pain the day after he started a teaching job in the film department at Montana State University in September 2011. Seven months later, he arrived at Spaulding Rehab. His right limbs were gone below the joints, while his left arm and leg had been taken above the elbow and knee.
In addition to training him in functional tasks such as safely transferring from a bed to a wheelchair and from a wheelchair to a shower bench or commode seat, Osborne put Lautzenheiser through a series of coordination exercises with his arm prostheses, such as tying a knot and threading a lace through rings. “It’s a challenge,” he recalls, “but those fine motor skills translate into more use and more confidence in the real world.”
Every patient has different goals, different motivations. Two of the things Lautzenheiser missed most were reading and cooking. “Will loves to read,” Osborne says. “It’s a huge passion. He has millions of books, and he was frustrated because he thought he wouldn’t be able to [turn the pages of] a book. And I was determined to prove him wrong. I got a whole pile of books—thick ones, thin ones, a catalog, a phone book—and we sat at a table for an hour and he just thumbed through these books with his prostheses.”
Osborne also took Lautzenheiser to Spaulding’s practice kitchen, where he made brownies. “I cracked the eggs and mixed up the oil and eggs and the butter,” he recalls. “Normally I wouldn’t make brownies from a mix, but this was a real beginning step just to see if I could do anything in the kitchen. And it was heartening to find out that with some help I more or less made the brownies.”
The film professor was also concerned about his beard looking too scraggly, so Osborne built him a prototype of a handle that would allow him to use his beard trimmer. “She is really creative and inventive,” Lautzenheiser says. “The job is not a onesize- fits-all. You don’t feel you’re on a treadmill with her; it’s not perfunctory. She really thinks about every patient individually.”
Another quality patients appreciate in Osborne is her ready laugh, her friendly nature.
“Even when something spectacularly didn’t work due to my disabilities, we could laugh about it, and there was no judgment,” says Lautzenheiser. “Some things just took time, and maybe on the third try I’d get it. Her sense of humor was good because there are a lot of ways in which people can be made to feel self-conscious about what they can’t do, and I never felt that with her. She was extremely supportive. She might say, ‘That’s okay, we’re going to focus on what you are able to do, and we’re going to build on that.’ She wasn’t out to prove what couldn’t be done. Her positive approach was extremely helpful.”
That’s key when a patient’s been in hospital settings for months on end, Lautzenheiser says. “It’s critical to be working with somebody who’s really a pleasure to work with and, in a way, becomes a friend. She became someone I could rely on and really talk to, which was great because it’s a big institution, and my friends and family couldn’t just hang out at Spaulding Rehab all the time. So it was an important connection.”
“Rehabilitation therapy seems to me like one of those things that might only be appreciated, if at all, in retrospect,” says Lautzenheiser. “While going through it, most patients seem merely to tolerate—if not be begrudging or even hostile toward—their therapists, who seemingly force them through sometimes painful routines. One way that Marissa is good is that her warmth and concern make one appreciative in the moment, not just after rehab’s done.”
“She knows how to push you,” agrees Jorge, “to get you to do what you need to do without being mean about it. She knows how to motivate you.”
Bringing It Home
Osborne’s people skills are evident even in her sessions with shorter-term patients. When, for example, a single-leg amputee first comes to the OT floor, the therapist’s goal is to get him functioning independently in a wheelchair within a few days with the hope that once his wound heals completely, he will begin to train with the prosthesis.
When ICView visited Osborne at Spaulding in November 2012, she was working with such a patient, a wisecracking old salt named Jimmy, who wore a T-shirt reading “TEAMWORK means a lot of people doing what I say.” As he steered a wheelchair around a slalom course of rubber cones, Jimmy joked about earning his driver’s license and claimed that one of the cones had moved on its own. Osborne indulged the banter while gently keeping her patient focused, but she had to get serious when the time came for a crucial lecture on regularly self-inspecting the stump—something amputees may not really want to do. “It’s tough, but it should be part of your daily routine,” she insisted as the older man frowned but nodded. “You’re looking for new redness, black, any changes in color [which could indicate infection]. Call the hospital if anything is wrong with it.”
Does working with amputees, burn victims, and other people who are suffering and striving to return to ordinary life affect Osborne when she’s away from Spaulding? Without a doubt.
“I have a girlfriend who works in advertising, and she’s constantly working until one in the morning,” Osborne relates. “And she’s said to me so many times, ‘Well, at least you don’t have to bring your work home with you.’ And yeah, I don’t have to bring paperwork home with me; I don’t have to treat patients at home. But, especially when you have an involved case, you’re constantly thinking, ‘How can I get this person to feed himself? How can I get this person to clean herself after she’s gone to the bathroom? How am I going to get this person home?’ That’s always weighing on your mind, all those things.” And when working with the same patient for days, weeks, or months, she says, “You grow attached— you definitely do.”
Nevertheless, Osborne is happy with her career choice, and she gives much of the credit to her Ithaca experience. “I can’t say enough about my education and, really, how it gave me the foundation to succeed,” she says. “Not to be conceited and say I’m successful, but I enjoy my career. I’m doing what I love, and I had the confidence to jump into this because of the education that I received.”
– Patrick Kennedy