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You Don’t Need Hands Or Feet To Be A Great Mom

Changing diapers, driving carpool... just a year after a near-death experience left her a quadruple amputee, Elizabeth Zweigel is already back doing what she loves most.

In her suburban Atlanta home, Elizabeth Zweigel sits down at the kitchen table. She watches as her four-year-old son Carson walks over, carefully carrying one of his favorite games: Hungry Hippos. He places it on the table, opens the box and sets it up, carefully locking each hippo into place and pouring all 20 marbles into the middle. They both begin to slam on the launchers, hoping that their hippo will win, having chomped more marbles and consuming the prized golden ball. When the game is over, Carson beams, and Elizabeth smiles back, thankful that she is able to share this moment with her son.

It’s a moment that many mothers might take for granted. But for quadruple amputee Elizabeth, who lacks hands and feet due to complications from septic shock, playing a game of Hungry Hippos with her son represents triumph on multiple fronts–even if he wins.

Elizabeth Zweigel and her son Carson (4) and daughter Mia (1)

Last year in March, at 33-years-old, Elizabeth fell ill with what she believed was the flu. A stay-at-home mom, she pushed through the day, taking care of her children as best she could. But by Sunday evening, her lips and legs were blue, she had trouble breathing, and couldn’t even walk down the stairs. Her husband Scott took her to the ER, where she assumed she’d receive some fluids and return home shortly.

Instead, by the next morning, Elizabeth’s doctors had placed her in a medically-induced coma. She was diagnosed with sepsis from a pneumococcal infection, which is what normally causes pneumonia as it enters the lungs. However, in Elizabeth’s case, the infection entered her blood, inflaming her body. The resulting septic shock led to multiple organ failure.  She was placed on 24-hour dialysis and a ventilator; at one point, after she was paddle-shocked back to life for the second time, her friends began planning her funeral.

“I awoke about three days later to find out that not only had my hands been amputated, but that my legs would also have to be amputated soon,” Elizabeth recalls. “I spent the next few weeks healing and trying to grasp what my near-perfect life would now be. How would I take care of my family? Was it really possible that I’d have to be taken care of?”

I awoke about three days later to find out that not only had my hands been amputated, but that my legs would also have to be amputated soon…. How would I take care of my family?

In late April, Elizabeth had bilateral amputations on her legs, approximately four inches below the knee, becoming a quadruple amputee. After almost two months in the hospital, she was transferred to a rehabilitation center for the next three months. Scott’s parents temporarily moved in to their house to help with the children. (In addition to Carson, Elizabeth also has a one-year old daughter, Mia.) While grateful for the support, it was also emotionally challenging.

Elizabeth recovering in the hospital.

“My in-laws brought the kids to the hospital many times, and they came to visit me almost everyday once I got to rehab,” Elizabeth remembers. “That was the best, but it was also very hard. They were the ones taking care of my kids full time. I knew I needed to focus on getting better, but it was hard to watch someone else take over.”

After the amputations, Elizabeth’s son, who was three at the time did not want to get too close to his mom. Seeing her lying in a hospital bed with no arms, a catheter and a feeding tube in her nose was overwhelming. Over time, as Elizabeth’s tubes were removed and she became more mobile, Carson became more comfortable with his mom’s new appearance. Mia was only four months old when Elizabeth was rushed to the hospital; she was too young to understand.

Motivated by her family, Elizabeth tried to get out of bed, using an electric wheelchair and beginning the long road of physical therapy. During this time, she met a small group of women in Atlanta who were fellow quadruple amputees. They took turns visiting her in rehab, sharing pictures, telling stories and answering questions. Most of these women are mothers, and several brought their children to meet Elizabeth.

“When I was in the hospital, I wondered how I was going manage. But then a quadruple amputee walks in with her kids and I realized I would make this work.”

“The main takeaway from meeting them was that I’m going to be okay,” she recalls. “When I was in the hospital, I wondered how I was going manage. But then a quadruple amputee walks in with her kids and I realized I would make this work. They also taught me that if something was important to me, I’d figure out a way to do it. One woman, a recent amputee, told me that she’d just learn to zip up her pants so she could wear jeans. Another had learned to kayak.”

Elizabeth takes her daughter Mia for a ride.

In early August, Elizabeth finally returned home, readyo get back to what she loved most – being a mother to her children. But it wasn’t easy. “The worst part about coming home was figuring out how to take care of my kids,Elizabeth explains. “I went into the hospital when Mia was only four months old, and during that time she bonded with the caretakers. She would go to them instead of me. I never wanted to change a diaper so bad! It’s not easy without hands, and she’s squirmy. It was so hard. I couldn’t even pick her up when she cried.”

Since then, Elizabeth has learned to change a diaper, but it’s a process. Step one is to hand Mia her iPhone so she doesn’t wiggle. Then she opens the clean diaper, using a combination of her arms and teeth to undo the straps. Next, Elizabeth lays Mia on top of the clean diaper and removes the dirty diaper, again using her arms and teeth; for hygienic purposes she will only change a wet diaper.  Taking out a wipe is the easiest part, but closing the diaper involves using her arms, chin and teeth. It’s not easy, but she will do it when necessary.

These accomplishments–insignificant for most parents–are big victories for Elizabeth. She relishes the little things.

For example, after several weeks of occupational therapy and adjustments to her car, Elizabeth hit a major milestone: she got back behind the wheel. Most moms aren’t psyched to do carpool, but Elizabeth had never been happier. “The first time I did carpool for Carson, I was the happiest mom to ever do carpool,” Elizabeth laughed. “Driving has been the biggest thing for my independence: a total game changer. While driving may not seem like a big deal to most people, to me it’s one-on-one time with Carson. When he’s in the car, he’s stuck with me. At home, he wants to play. Now I can take Carson to school, and we go to the grocery store together.”

“While the physical things are a challenge for me, I am able to do the emotional part of parenting.”

Last December, Elizabeth received her prosthetics. Explaining to Carson that his mom would soon be half-robot, her son thinks Elizabeth’s arms and legs are “cool”. But months later, these prosthetics are still a challenge, and she does not use them regularly. They are more difficult to maneuver, so her occupational therapist suggested she begin by learning do things she enjoys. Her first thought immediately went to her children: what can she do with her new arms and hands that will make day-to-day life easier and more fun for them?

“Necessity is the mother of invention,” says Elizabeth. “Sometimes I’m hesitant to try something new, but I know now that I can figure out most things. If I can’t, I will wait for help or do something else, and I try not to let it get to me. I do have a moment here or there where I think ‘this is so awful,’ and then I see my kids smile or laugh. I know that missing this would be way worse, and, it would be even worse for them. It would be terrible for them and my whole family if I wasn’t here. I’d rather be here without hands and feet than not be here at all.”

Although she wants to put her children first, it’s a balance. Elizabeth still receives regular therapy to gain strength and better use her prosthetics, and she has to spend time caring for her body. But she’s making parenting work as a quadruple amputee. “While the physical things are a challenge for me, I am able to do the emotional part of parenting,” Elizabeth says proudly. “I can still teach empathy, honesty and compassion. And maybe I can teach them better than others.”

Profiles

Meet Mexico City’s Amputee Grammar Queen

After losing her leg to cancer, Paulina Chavira turned to her passion for grammar to make sense of the world.

Paulina Chavira, Mexico City’s grammar queen, is sitting in her office, having another fight on Twitter.

“People often get angry with me, saying things like ‘how can you correct me?’” she says. But Paulina feels driven. It’s just one of many interactions she’ll have online on a regular day. But not all are negative – Paulina gets comments and questions from educators, writers and the media, calling on her to advise them on issues of punctuation usage, accents, structure and more.

Being grammar queen is something of a new gig for Chavira. But she’s always had a passion for words.

Chavira checks Twitter.

In July 2013, when Paulina was 33 and had her first son began kindergarten, she read a tweet revealing that Mexico’s education ministry was going to accept public school textbooks into the country’s classrooms even though they were riddled with errors – 117 errors, to be exact. She took to Twitter to express her outrage, thinking, “How can this happen?” So she tweeted to her 400 followers.

The following day, major Mexican media outlets picked up on the issue, harshly criticizing the ministry for allowing a textbook with so many mistakes into public schools. But Paulina’s ire towards grammar mistakes isn’t just aimed one way. The day after, Paulina identified another issue, tweeting back to media sources: “Media outraged with 117 spelling errors in the textbooks of the SEP, but indifferent to those they commit daily.”

The sudden attention got Paulina thinking. In Mexico, as elsewhere, Twitter is a big way that people get their news and information. She asked herself how she could use Twitter to promote proper grammar, and came up with the idea of a Twitter database where Spanish speakers could check spelling and grammar. Armed with the @117errores handle, the result was NoMás117errores, or “No more 117 errors”, a direct reference to the 117 grammar errors found in the schoolbooks.

The grammar bug got Paulina in high school. That was also the year she was diagnosed with a cancerous tumor in her right knee. When Paulina started her chemotherapy in May 1997, she was having a hard time thinking of the future at all. Paulina thought it was bad enough that she might lose her hair, but soon, there was talk of amputating leg… talk that became a fearful reality after she woke up from her final leg surgery on September 29th, 1997 to just one foot and the indescribable experience of phantom limb pain.

“More painful than all of the surgeries was trying to stand again for the first time,” Paulina remembers. With the help of a few dedicated teachers, Paulina stayed on top of her schoolwork. Her parents, meanwhile, were an incredible support system. “You are more than just your leg,” they repeated, a constant refrain. “You are an entire human being.”

Paulina Chavira in Japan while working for Marlo and his team.

“You are more than just your leg,” they repeated, a constant refrain. “You are an entire human being.”

Over the next few years, Paulina ran the gamut of fears regarding her transition. “How will people look at me? Will I ever get married and have kids? Will I ever dance again?” Making matters worse was her prosthetic leg, a model unchanged since World War II.

When she went to college, she chose journalism as a major, and it was there that her love of writing and grammar became a passion. “Writing was a way I found to pour out all the pain and anger I had after my leg was amputated,” she remembers.

While studying at Tecnológico de Monterrey, Paulina’s antediluvian prosthetic was still causing her problems doing simple things like walking long distances and wearing her normal clothes.

Her father heard about a prosthetic engineer, Marlo Ortiz, over the radio. A man who was revolutionizing the anatomical socket, the interface where the residual limb goes into the prosthetic. The Marlo Anatomical Socket (MAS), was developed with the engineer mindset to provide more skeletal support and be aesthetically more human-like in the gluteal region. Paulina worked closely with his team, testing the new technology, and eventually getting her own advanced prosthetic.

“There was life before Marlo, and life after Marlo,” says Paulina. Not only did he supply her with an advanced prosthetic, but he taught her to use it for the first time. It renewed her confidence. “For the first time I thought, maybe I should try this, while before, I automatically thought: No, I can’t,” she remembers.

This confidence encouraged her to study abroad in Spain, there she finally felt like she really accepted her metamorphosis. “Up until that point, I had never really faced that I had lost a leg.” But abroad, it was was impossible to skirt around the issue. Her new friends asked about it, and as they asked about her missing leg, Paulina stopped being ashamed.

“For the first time I thought, maybe I should try this, while before, I automatically thought: No, I can’t.”

She returned from Spain with newfound independence, and she was asked to join Marlo and his team as a full-time Media Coordinator and Patient Model. Full of unique opportunities, she put her journalism career on hold and she traveled to the Czech Republic, South Africa, Japan and more: visiting the factories where they made the prosthetics, using her journalistic skills to do public relations and talk about her experience. While the experience was extraordinary, after more than a year she felt like she was living inside of her experience losing her leg, and felt like it was time to move forward and reconnect with journalism.

Paulina also found love, something she had previously feared when she first lost her leg.

Paulina and her husband Hector dancing at their wedding.

She married Hector, in November of 2006, and they “danced all night.” As for their two young boys, she tries to make the prosthetic leg as normal as possible. “I think the more normal we can be about it the better.” Once her son Mateo even asked, “does everyone’s mom have a prosthetic?”.

Once her son Mateo even asked, “does everyone’s mom have a prosthetic?”

Her influence on Twitter landed her an editorial position with The New York Times en Español and her career goals have grown. She now hopes to finish a Spanish style-guide for news.

Over the years, and despite the trauma experienced during her formative years, Paulina followed her love of language, starting with writing, finding the accessible opportunity of editing in journalism, and ultimately as a grammar force in her editorial position and on Twitter.

Her ultimate pet peeve on Twitter is “when people say ‘it’s not well written but you understand me.’ And I can’t understand why they don’t see the importance that it’s written correctly.” Paulina believes in the power of language and grammar. She says: “I love my language, I love to write it correctly. It’s a weapon. A peaceful weapon.”

Profiles

Queen Of The Real-Life Furiosas

Angel Giuffria was the world's first bionic baby. Now she wants to be Hollywood's first bionic leading lady.

Angel Giuffria was the world’s first bionic baby. Now she wants to be Hollywood’s first bionic leading lady.

Amongst the colorful cosplay clans of this year’s Wizard World Comic Con, there was a new tribe, jostling steampunk elbows with the Stormtroopers, the Deadpools, the Jokers, and the Wolverines: The Furiosas.

Dozens in number, these post-apocalyptic Amazons boast tunics made of linen, shaved heads, blackened faces, steel prosthetic arms, and skull tattoos on the nape of their necks… details borrowed from the Imperator Furiosa, Charlize Theron’s breakout character in the 2015 blockbuster, Mad Max: Fury Road.

If you haven’t seen Fury Road (and what’s stopping you?) Imperator Furiosa is many things: an orphan, a former sex slave, and a warrior with a kick-ass bionic arm. But one thing she isn’t is a victim, which is what has made her inspiring to both women and men alike.

That’s why, in the year since her debut, Furiosa has become one of the most popular characters for fans to dress up as when they go to sci-fi conventions and Comic Cons.

But of all the Furiosas, there’s no one who does the Imperator better than Angel Giuffria. This twenty-something actress living in southeastern Louisiana is the Queen of Cosplay Furiosas. Because she has something that no other Furiosa has: a real-life bionic arm.

“You know what I really like about Furiosa?” Angel says to me by phone as she drives down the highway, gripping the wheel with her myoelectric (or muscle controlled) prosthetic. “In Fury Road, no one ever asks Furiosa what happened to her arm. No one asks if Furiosa’s okay, or if she needs help. She’s just herself. No one needs an explanation about why she only has one arm. Because the filmmakers had respect enough for their audience to just say, hey, this is just her.”

That’s an idea that resonates with Angel, a congenital amputee. She’s just her, whole unto herself. For her whole life, though, she’s been asked what happened to her arm. “When you’re a kid, it’s just so hard to explain why you’re different,” she says. None of her friends got it until 2003. That was the year Pixar’s Finding Nemo came out, whose title character has a congenitally underdeveloped right fin. Suddenly, Angel had a pop culture reference that made her condition understandable to her friends. It opened her eyes to the power of film to broaden perspective on what was (and “wasn’t”) normal.

There’s just as much Nemo as Furiosa in Angel. Like Nemo, Angel was born with one fin a little less formed than the other. Like Furiosa, she soon got a bionic arm to supplement it.

“When I was born, my mom had no idea I was only going to have one hand,” says Angel. “Ultrasound wasn’t as advanced then, so it was a big surprise to her.” But a few months before, Angel’s mother had happened to catch a television program. It was a news report on the debut of the first ever electric prosthetic hand for kids to be released in the United States. “Mom says she cried through the whole program,” Angel laughs. So when her daughter was born without a left forearm, Mrs. Giuffria was undeterred. “She kept screaming to the doctors in the maternity ward: I know where to get Angel a hand!”

Six weeks later, Angel had one. “Because of how proactive my Mom was, I was the youngest person in the world to be fit with a myoelectric prosthesis, and as far as I know, I still am,” Angel says.

Angel was the world’s first bionic baby.

Over the years, Angel’s prosthetic has only got more advanced. When she was a kid, it could only open and close. When Angel was 11, she got an upgrade to a hand which could pinch at varying pressures. Then, in 2007, the first multi-articulating bionic hands came out. These prosthetics allow for many grip patterns, like wiggling your fingers, or delicately holding a plate in a buffet line between your thumb and forefinger. Angel had to have one. The first models she tried were huge, like robot boxing gloves. By 2015, though,  Steeper, developer of the bebionic hand, was the first company to put out a small size hand that could fit those of smaller stature like females and young adults. It’s a super svelte multi-articulating hand Angel has worn ever since.

As a bebionic product representative, Angel tours the globe all the time, trying to raise awareness of prosthetics. She also has an entertaining Twitter feed, in which she talks about day-to-day life as a bionic woman, right down to what to do when people stare at you at the airport when you’re charging your bionic arm from a wall socket.

My hand can rotate 360 degrees on my wrist! How can I not be bionic enough?

Angel’s true passion is acting, though. That’s where she sees her ability to change the world’s perception of amputees. True, there’s not a lot of Furiosa roles out there, and even Furiosa wasn’t played by a real amputee. Still, Angel – who has worked with Jennifer Lawrence in the Hunger Games movies, as well as Ben Affleck and Jon Lithgow in the forthcoming movie, The Accountant – says that the roles she loves most are the ones that don’t have anything to do with her arm, or lack thereof.

That’s something that isn’t happening quite yet. As a bionic actress, Giuffria says she has been turned down for roles where she is told she “isn’t bionic enough” compared to CGI superimposed above another actress wearing a green screen glove. (“My hand can rotate 360 degrees on my wrist!” Angel laughs. “How can I not be bionic enough?”) She also finds herself getting turned down for amputee roles in horror movies because she’s “too cute” and the director wants to “scare people, not make them sad”… a type of professional rejection Angel rightly considers pretty insulting.

In Angel’s best roles, though, being an amputee isn’t a consideration at all.

Angel’s current prosthetic is provided by bebionic.

Angel remembers her first professional acting role, a bit extra part in 2011’s Green Lantern. Green Lantern wasn’t a great film, as Angel will be the first to admit. As the one girl in 100 personally chosen by director Martin Campbell as a featured background player – an extra with no one else in the scene with her, “not just a blob in the background” – it was still important to her. It gave her a glimpse of how Hollywood, and the rest of the world, should be.

In Green Lantern, Angel’s role was small. In a scene early in the film, she had to run down a college hallway, because her character was late for a class taught by “professor” Peter Sarsgaard. But after being cast, Angel started getting cold feet. She hadn’t mentioned her prosthetic; what if they hadn’t noticed it?

So with trepidation, Angel asked if she could speak to the director. Eventually, he came, at which point, Angel told Campbell that she only had one arm. “I told him it would be cool if he picked someone else,” she remembers. “An extra, even a featured background player, isn’t supposed to be the big question mark on the screen.”

But Martin didn’t react the way Angel expected when she told him about her prosthetic. “He looked at me, and asked: ‘Have you ever been late for class?’ Well, yeah. So he said, ”Then I don’t see any reason why you can’t do this.”

So she did. Because while sometimes she dresses up as Furiosa, the rest of the time, she’s just herself. She goes to school, she does Yoga, she avoids gluten, she has drinks with friends, and she tries to get acting roles that don’t have anything to do with her arm. Because Martin was right. Anyone can be late for class. Even Furiosas.