What It's Like...

Living with Limb Loss

livingwithlimblossLeslie Schneider puts her law degree to good use as the U.S. clinical & regulatory affairs manager at Ottobock, a world leader in orthotics, prosthetics and mobility manufacturing. But Leslie, who lives in Minnesota, has also worked as a nurse, and her interest in medicine may have sprung from an accident she had as a little girl.

Today, Leslie volunteers as a peer mentor to people of all ages living with limb loss. She recently starred in an Ottobock-produced documentary called Limitless. Here, she describes what it’s like…

…To Adjust to Limb Loss

Leslie was just 6 when, on the first day of summer vacation, she was hit by a truck while playing outside her home in New Ulm, Minn.

“When I woke up in intensive care, my mom, my dad, my grandma and grandpa were standing around the bed, and my mom told me about the accident,” Leslie recalls. “I’d lost my leg and she said they amputated, and that means it’s not going to grow back.”

Leslie received that news with surprising calmness.

“I think at that stage of child development, kids say, ‘Oh, OK,’” Leslie notes. “You just accept it.”

Rather than spending her vacation at home, Leslie says, “I spent the entire summer in the hospital, and I was in isolation for about four weeks because I had staph infections and a lot of revisions [additional surgeries]. I had to be NPO [not allowed food or fluids by mouth] because I had to get anesthesia so they could debride my leg.”

Looking back at that time, Leslie now says, “That’s how my interest in medicine probably started.”

Still, being in the hospital was scary, especially decades ago, before more child-centered healthcare became the norm.

“My parents couldn’t stay the night with me,” Leslie says, citing strict hospital adherence to visiting hours. “My parents owned a restaurant, so my dad stayed home with my brother, and my mom got a room at a boarding house a couple of blocks from the hospital so she could be [at the hospital] every day. When I would change rooms, I’d always try to get a room that would face the boarding house so I could look out in the night and at least know that she’s out there.” Leslie says her parents were “honest and forthright all the way through” about what was happening. “They didn’t really hide anything,” she recalls.

Those early childhood experiences, she adds, helped shape her adult personality. “I think it really formed a lot of who I am, my independence.”

And from the start, losing her limb wasn’t going to define who she could become.

“My goal was to get back to second grade,” she says. “I was not going to let this little accident stop me. I was not going to miss any school. And so I got back to school on the first day with my little cane and my prosthesis. I was still Leslie, with my same classmates at the same school. I just happened to have a prosthetic leg. I was back into tap dances, back into Brownies, and back to all my friends.”

…To Mentor Others Who Live with Limb Loss

Leslie writes a blog (onelifeonelimb.com) and mentors others living with limb loss. Many people that Leslie works with are newly injured. But not all.

“In the last year, I’ve mentored a young woman — she’s 16 — who was born without her leg,” Leslie says. “Her experience is a little more similar to mine, being a child and growing up with limb loss. But being a teenager with limb loss is challenging. It wasn’t new for her, but adolescence is new to her. Any time we’re physically different, people tease you.”

One of the first challenges, Leslie notes, is to build trust. livingwithlimbloss2

“Just because we have this commonality doesn’t mean they’re going to instantly put themselves out there,” she says. “Every introduction is a little awkward, and you have to feel it out about how forthright are they going to be, or how forthright I should be. I let them lead.”

Leslie says her skills as a nurse can help her to start by assessing the situation objectively.

“And then once they start talking, I go into ‘Me’ mode,” she explains. “’We’re peers: I have limb loss, you have limb loss.’ It’s not like we instantly become best friends, but I think so many people are so overwhelmed with questions and the unknown that I think there’s a lot of trepidation on their part.”

Leslie adds that she doesn’t give out legal or medical advice. Instead, she listens and then encourages her new friend to check with a medical professional, for instance, if a prosthetic is causing pain.

“I hear a lot of ‘Is it normal to have to wait for my pain medications?’ and ‘I’m getting a lot of phantom pain,’” Leslie says. She then suggests, “Talk to your doctor, talk to your nurse, talk to your prosthetist. If you’re feeling that you’re not getting what you need, talk to somebody.”

Regarding pain issues, Leslie says, “I absolutely say it’s not normal. You do have pain, especially post operatively or post amputation. But it’s manageable, and that’s what I know as a nurse. If it’s out of control, speak up.

“People I meet when they’re getting fit with their prosthesis or when they’ve had a prosthesis and it’s not working or not comfortable, that’s again when I say it is OK to go to somebody else. You have to speak up.”

The possible questions are infinite, Leslie says: “’Do I wear my leg when I sleep? What do I do when I get up in the middle of the night and have to go to the bathroom? What do I do for work?’ It’s very much an open dialogue. Sometimes the family will be there, and family members will have a lot of questions.” And mentoring relationships are ongoing, Leslie says, as people encounter new situations.

“I leave my contact information, because the questions don’t stop,” she says. “Some people I hear from right away, and with some people, nothing. Then six months later, I’ll hear from them. Especially here in Minnesota, maybe it’s summertime when I meet them, and suddenly it’s winter and they’re like, ‘What am I going to do about the snow? How am I going to walk across the ice? Nobody told me about this!’”

In a wider-reaching sort of mentorship, Leslie and her family recently starred in a documentary called Limitless, produced by Ottobock. The film debuted in November 2013 at the ReelAbilities Disabilities Film Festival in Minneapolis.

“It was atypical of me to be willing to put my story out there,” Leslie says. “Like I said in the film, it’s not that I hide the fact [that she uses a prosthesis] by any means. I just don’t think of it as a defining characteristic of mine. And so when I finally came to the decision to go ahead with it, I thought ‘I’ve come full circle, living with limb loss and trying to pay it forward.’

“I can’t help thinking that somebody who is new to it might think, ‘What am I going to do? Is there a future for me or my child or my loved one?’ My story can show them: ‘This is just one person, but there is hope.’ That’s really why I did it.”

…To Love Shoes, Boots, Skirts & Dresses!

In her Limitless film, we see Leslie rocking a collection of above-the-knee skirts and a range of shoes, from ballet flats to sophisticated black boots.

“I wear skirts practically very day,” Leslie says. “I think I have one pair of jeans.” She laughs. “I just hate pants!”

But her fashion preferences also serve a purpose when she’s meeting people living with limb loss.

“When I meet women -- or even men -- I purposely wear a skirt or a dress, and if it’s decent weather, without tights,” she explains. “And black boots in the winter.”

That first impression can be eye opening, especially to newly injured patients accustomed to seeing, for instance, athletes with clearly visible prosthetic limbs.

“The trend in prosthetic wear is you see people without foam covers,” Leslie says. “You see a lot of the hardware exposed.”

In comparison, Leslie’s prosthetic is so realistic that it can be difficult to tell it apart from her other leg.

Appearance is a common concern, Leslie says. She says that when meeting women who are newly living with limb loss, they’ll tell her, “I’m an accountant or a lawyer, I work in an office, and I like to dress professionally. Will I still be able to when I get a prosthesis?”

Leslie says yes, though the process can be lengthy.

“It took so long for me to get a pretty leg,” she says. “It wasn’t until I was 16 that I got a leg that had the foam cover with the socket on the inside and all the hardware on the inside. I could not imagine not having a cover on my leg.”

Having a prosthetic limb she’s happy with is at least partially the result of working well with her prosthetist.

“I tell a lot of women, ‘This is what my leg is like, I have this cover,’ and they’ll say, ‘Your left leg looks exactly like your right leg.’ I demand perfection from my prosthetist. First and foremost, you want a socket that fits and is comfortable because without a good-fitting socket, nothing else matters. If you’re not comfortable when you’re wearing it, you’re not walking. Once you get that and the componentry that works best for you, then it’s okay to say, ‘I want a leg that looks like my other leg.’”

When Leslie met with a survivor of the April 2013 Boston Marathon bombing, “I started telling my story, and she looked at me like, ‘You’re an amputee?’ And I said yes, and she just started crying. She looked at my leg and said, ‘I just had no idea. All I’ve seen is all the hardware. I didn’t know I could have a pretty leg.’ Her mood just changed.”

It’s those vital questions that Leslie hopes to answer when working with people living with limb loss.

“I think a lot of what we see in the media are the Paralympic athletes,” she says. “We see the Wounded Warriors. And I have the utmost respect for athletes and Warriors without a doubt. What we don’t see a lot of are normal people, the people who, like me, just happen to be in an accident as a kid and have grown up with limb loss and try to make the world a better place.”

While Leslie understands why the media is attracted to elite athletes and courageous veterans, she feels concern for “ordinary” people “because they think, ‘What about me? I work in a hospital lab and happened to get hit by a drunk driver, and I still have to work for the next 20 years. What about normal people who happen to have limb loss?’”

The answer that Leslie hopes to convey: “It is kind of a roadblock to a certain extent,” she says, “but then life goes on.

“I’ve always taken an approach — unless it’s in peer meetings – that I never go up to somebody and say, ‘Hi, I’m Leslie, I have a prosthetic leg.’ I don’t say anything unless somebody asks me because I honestly don’t think about it. To somebody who’s new to it, that doesn’t make sense because how can it not be in the forefront of your mind?”

Leslie says she tells people newly living with limb loss, “I’ve had x number of years to live with this and to get used to it. And you will get to that point too, where it’s not the first thing you think about. We’re humans first: we’re females, we’re males, we’re mothers, we’re children, we’re sisters, we’re friends. So we think about those things first — and then maybe we think about what is different later.”