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These Boston Marathon Bombing Survivors (And Their Dog) Wrote A Book To Teach Kids About Disability

Inspired by the four-legged friend who helped turn their life around, amputees Jessica Kensky and Patrick Downes are sparking a conversation about disability.

Collaborating on a book under the best of circumstances is not always easy. Now imagine that you are Jessica Kensky and Patrick Downes, first-time authors and husband-and-wife survivors of the 2013 Boston Marathon bombing, and you’re drawing on your own experiences to write a picture book for children about a girl who has her legs amputated but finds solace from a specially trained service dog named Rescue.

Kensky, 37, and Downes, 35, don’t have to imagine it. They lived through that apocalyptic ordeal, lost limbs, endured tortuous therapy, and managed to write Rescue & Jessica: A Life-Changing Friendship (Candlewick Press), a truthful but sensitive story that offers hope and, more importantly, gives kids a way to talk about what it’s like to be “disabled.” Kensky and Downes spoke to us from their home in Cambridge, Massachusetts, along with Rescue, their six-year-old black Labrador and the real star of their in-person book signings and readings.

Jessica Kensky, Patrick Downes, and their service dog, Rescue.

You didn’t set out to write a book until a friend and children’s book agent suggested it. What convinced you?

PD: We noticed early on that when we started going out in public in wheelchairs, with crutches and with our prosthetics—

JK: —and without our prosthetics.

“We realized that by engaging kids in this conversation, we were demystifying
what it means to be a person with a disability.”

PD: —and without our prosthetics and with Rescue, kids would see us and work really hard to figure out what they were seeing. We’d invite them to come over and investigate our wheelchair and our prosthetics. They’d start asking questions about how our legs work and how we got around and what Rescue could do for us. Once they started to touch our different medical equipment and pet Rescue, they became more fascinated. We realized that by engaging kids in this conversation, we were demystifying what it means to be a person with a disability.

What was it like collaborating on this project?

JK: It was really fun. If it wasn’t, we never would have worked on it because we did the bulk of the work while we were at Walter Reed and I was having a lot of surgeries. I ended up losing another limb. I was so sad and so depressed and so hopeless that I wasn’t able to do normal life things, but this was always a fun, therapeutic thing to work on. I think our marriage works in a way that the book works in that we bring very different things to the table. I’m very literal and want to be very accurate and educational, and Patrick was going to be a little more playful.

Rescue being “interviewed” about the book he inspired.

Can you give me an example?

JK: We decided not to use the word “amputate” because we thought that was not going to be a word that a lot of kids might understand. Patrick’s training helped in how to be honest and age-appropriate, so we landed on something like: “In order to be healthy again, Jessica’s leg had to be removed.” I wrote a line about myself that I was so nice and so pretty, which kids always laugh at.

What was the hardest part to write?

JK: Deciding what was accurate and what was not necessary for the story. It was hard to narrow the scope about what parts should be included and also where to start the story. I think the book ended up being a lot better by having the character lose her second leg the way that she did because it’s this huge setback in the book. I think a lot of times in life as a child and an adult, you think you’ve made it through something and then you realize you have to go all the way back to the beginning. It’s an extreme example, but it’s something that a lot of people and children can relate to.

Did anything surprise you during the writing process?

JK: The process was really organic and really natural. Even though it was kind of about what happened to us, it felt lighter and it was a departure from the everyday grind of our recovery. I think that’s what was so surprising about it: how fun and therapeutic it was.

PD: Reminding ourselves that we could use our professional, educational training to tell a complicated story for the greater good, to really highlight certain scenes that we’ve encountered but use it in a way that could be educational and empowering to others. It brought us to tears regularly to see how young kids have taken to it.

“For me, kids have never once asked me something that made me sad or upset me in any way. Adults ask questions that can be piercingly painful.”

Is there a question you get tired of answering?

JK: For me, kids have never once asked me something that made me sad or upset me in any way. Adults ask questions that can be piercingly painful, [such as]: if we’re having children—which is a personal question in general. It always amazes me that people feel entitled to ask me that. Or they’ll also ask in an elevator, riding two flights up with them: what happened to your leg? Maybe I’m having one minute that day when I’m not thinking about it and I don’t really want to share with a stranger the worst day of my life. But I could be in that same elevator ride and in that same mood and have a kid ask me if I was part robot and it always makes me laugh.

PD: Because our story of injury and recovery has been so public, people feel in some cases entitled to ask questions well beyond what you would normally ask someone, that social norms don’t apply.

It’s been almost a year since you returned home from Walter Reed. What can you tell me about your recovery?   

JK: I think we recently hit a new phase of recovery that eluded us for a long time. Patrick and I find ourselves struggling and working on this idea of reintegration. Both of us thought it was going to be easier and quicker. It’s this weird time when you’re in the thick of it. You’re daydreaming about the time when you’re healthy enough to move back home and do things again like school and work and travel, yet you’re in it and it’s really hard. Life looks very different than we ever imagined. That gets kind of confusing.

And health wise?

JK: We’re what’s called community ambulators. Most days, we both wear our prosthetics for most of the day. We still use wheelchairs at night and in the morning and whenever one of us is having a bad day or an issue with a prosthetic. For the most part, we’re able to stand, walk in the grocery store, run errands, go to schools and things. Again, it’s a relatively new phase. I’ve only been walking consistently with two prosthetics for about a year. We’re in this kind of—I don’t know—recalibration. It’s hard to describe.

What role does Rescue play?  

JK: When I got him, I was very focused that he’s going to help me navigate this new life. He can turn off lights, open certain doors, bring me my phone, pick things up off the floor. What I didn’t think about was how he brought lightness and laughter back in. Pets have a way of being in the moment and keeping you in the moment.

The cover of “Rescue & Jessica.”

Give me an example.

JK: Patrick and I will be having a really intense or serious conversation and he’ll start snoring and it makes us laugh. I bring him to class with me and we’ll be having a really boring lecture and you’ll hear him let out this big huge sigh. There were times when Patrick and I were so distraught and so exhausted, we had no words left to say to each other, but we would always go out and throw a ball for Rescue. I think it was our way to meditate and to watch this beautiful animal be so coordinated and athletic and effortless at a time when we were in so much pain and couldn’t get around and really felt the opposite of all those things.

“I think a lot of times in life as a child and an adult, you think you’ve made it
through something and then you realize you have to go all the way back to the beginning.”

Any thoughts for someone who might be coping with a similar life-changing event?

PD: The most important ingredient of any recovery, of resiliency, is having some kind of companionship and community. You can tell people to suck it up or be tenacious, never give up—but you need good people surrounding you to encourage you, to pick you up, to just be sad with you, to distract you. That is really the key to moving on and moving through and still finding meaning in life.

JK: When I lost one leg, I literally said to my dad at the time: over my dead body will they take my other leg. Then years later, there I was advocating for myself to have a second amputation. So, just not to overestimate yourself and what you can overcome, what you can get used to, what you can adapt to. These cliched things are so true. The one about: You don’t know how strong you are until you have to be. If someone told me: could you get through this situation?  I’d say absolutely never. I loved my legs, I loved running—all these things either I can’t do now or they’re different or they’re very challenging. I never thought I could have some love and life and quality of life like this.

Health & Fitness

The Aztec Warriors of Amputee Soccer

This up-and-coming team of soccer superstars is showing that you can still bend it like Beckham when you're disabled.

Julian Luna still remembers the day a neighbor told him about an amputee soccer team in Mexico City called the Guerreros Aztecas and asked him if he´d be interested in coming to practice.

Luna, who lost his leg due to a soccer-related injury in his home country of Colombia, had a somewhat predictable answer.

“It was eternal waiting for the day that I could go back to playing,” says Luna, who is now a forward for Guerreros Aztecas, a soccer team that forms part of the Amputee Football Association of Mexico.

Amputee soccer was first played competitively in the U.S. in the 1980s and later adopted by countries around the world, including Mexico.

Team photo of the Guerreros Aztecas.

The rules, which closely resemble those of the standard game, have a few key differences: Outfielders can have two hands but only one foot, while goalies can have two legs but only one hand. According to the World Amputee Football Federation, metal crutches are also not allowed to be used to advance or direct the ball.

The rules dictate play around the world, and n the Mexico league, which is comprised of roughly 200 players and 13 teams— including the Guerreros Aztecas.

Omar Espinosa saw a local newscast about the team after it was founded in 2013 and wanted to help. Espinosa and his brother, Carlos, eventually found themselves volunteering as the goalkeeper and midfield coaches, and have since recruited players and designed drills for the team by watching videos on YouTube. One of the key things they train new players to do is gain the confidence to sprint across a field on their crutches. 

“It´s about overcoming your fear,” Espinosa explains.

Thanks largely to efforts like theirs, there are now 17 players on the team up from six only four years ago. And the Aztecas are getting better. When the team played their first match against a northern Mexico-based team known as Tigres, they lost in a 10-0 blowout. This season, the Guerreros Aztecas finished third in final standings, losing just 2-0 to the Tigres in the semifinal match.

“We want to be champions,” says Espinosa.

“We want to be champions.”

The team’s standings have put it in a strong position for the Amputee Football World Cup qualification round in March, when up to four players from each Mexican team will be chosen to form the national selection that competes in Jalisco, Mexico in August 2018.

An estimated 28 teams from around the world are expected to participate in the tournament, up from about 20 when the last World Cup was held in 2014.

At a recent practice, the Guerreros Aztecas prepared for the qualification round with aerobics, drills, and a 12-man scrimmage. Dressed in multi-colored jerseys, they fanned across the field, raising themselves up0n their crutches before flinging themselves counter-gravitationally into the air to kick the ball.

One player received a pass with his chest and stumbled backward from the ball’s force. Then, he found his balance and continued running on the pitch.

Victor Hugo, a defensive player who was one of the two Guerrero Azteca players chosen to be part of Mexico´s World Cup team in 2014, gulped down water in between a play.

“Coming here after an amputation is like being able to live again,” he says, wearing a pink jersey with a large number “2” on the back.

The players on Guerreros Aztecas all have their own stories. One player known as Toro had an amputation after he was thrown off a bull and was gored by its horn. Then there’s Rey David Angeles, the goalie, who liked to give his cat leftovers from his uncle’s butcher shop and had his arm amputated after it got caught in the meat slicer.

But what ultimately unites them all isn’t the fact that they are missing limbs. It’s their love of the game.

“I like soccer. I like to watch it, play it. It’s not just my passion, it calms me,” says Hugo, who earns his living by performing soccer tricks at traffic intersections in Mexico City during the day.

“A lot of people who join the team say, ‘I played for years, but even though this happened to me, I want to keep playing,” says Espinosa.

The Guerreros’ biggest difficulties, Espinosa explains, are those common to many sports teams: gathering finances and finding fields.

The rules of amputee soccer say that you can’t use your crutches to hit the ball.

For now, local congressman Raul Flores has helped sponsor the team, while others have loaned it fields to practice on and even donated uniforms..

As for Espinosa, the Guerreros Aztecas are a passion project for him. 

“Finding this team has been a lesson about life,” he said. “Disability is all in your mind.” 

Health & Fitness

That One-Leg Monster

How K.C. Mitchell, a combat-wounded Army veteran, became the strongest amputee powerlifter in the world.

Powerlifting is a strength sport consisting of three different lifts: the squat, the bench press, and the deadlift. But being a successful powerlifter takes a lot more than just being physically strong enough to lift a loaded bar off the ground or push it away from your chest. It takes dedication and commitment. It takes hours of hard work and planning, both inside and outside of the gym. And it takes the willingness to move past your comfort zone.

Nobody knows this better than K.C. Mitchell. With a 611-lb. deadlift, 441-lb. bench press and 505-lb. Squat, the Army veteran–known colloquially in the powerlifting community as “that one-leg monster”–rocks some pretty impressive numbers already, but he has his sights set higher.

His goal is to be the strongest amputee of all time. He points out that he may well be that now.

K.C. Mitchell is capable of  a 611-lb. deadlift.

Mitchell’s goal is to be the strongest amputee of all time. He points out that he may well be that now.

Mitchell had planned to join the military in junior high, but stuck around after high school for a while to work at a dairy farm and spend time with his then-girlfriend.After about six or seven months of this, he was ready to move on. “The [Iraq] war was going on, and it was just time,” he explained. The career station recommended the infantry, and offered to pay him extra to jump out of planes. He agreed. Then they asked him when he wanted to leave. He said, “Actually, just as soon as I can go.”

A week and a half later, Mitchell went to Fort Benning, Georgia for basic training, followed by Airborne School at Fort Bragg. He deployed to Baghdad, Iraq in 2005/2006. Then he was promoted to Sergeant, re-enlisted, and moved to Fort Lewis, Washington. He was there for about three years, and deployed to Afghanistan in 2009/2010. Before leaving, Mitchell got engaged, and learned that his wife was expecting a baby. While he was deployed, In February, Mitchell was able to get a short leave to visit his daughter, Skyree, before he had to get back to Afghanistan to finish out his tour.

Mitchell was wounded in the Kandahar province in April 2010 at the end of his tour when an improvised explosive device blew up under his Humvee while he was on night patrol, severely injuring his left leg. “I woke up after I got blown up, so I knew immediately what had happened,” Mitchell says, “but I didn’t know how severe my injuries were until probably about a month after I got injured.”

Mitchell attempting a squat. His record is 511 pounds.

His injuries included second and third-degree burns, shrapnel wounds, a broken right forearm, a lower back fracture, and injuries to both his right and left leg. He was in ICU in a sedated coma for about a month before moving into a different ward, and doesn’t remember anything about that month. He was bedridden for four months and was at Walter Reed National Military Medical Center in Bethesda, Maryland for almost a year.

About seven months after Mitchell was wounded, he decided to have his leg amputated below the knee. “It was really painful, there just wasn’t a very good outlook on my future with it, and more than likely I would’ve had to amputate it anyway when I got older. Me being younger, I could recover a little bit better, so I figured that would probably be the best thing to do rather than to sit there and deal with the pain and everything else,” he explained. After transferring out of Walter Reed, Mitchell transferred to the Balboa Navy Medical Center in San Diego, where he’d go through two more years of rehab trying to fix his right leg.

What kept him going while in recovery was some of what he saw around him at Walter Reed. “I saw a lot of guys that were missing all four limbs. The only way they could move was people moving them from one bed to another, or from the bed to the wheelchair. That’s how they got around. In my head, I realized, it could always be worse.  That’s how I’ve always been. It could be worse than what it is now.”

“I saw a lot of guys that were missing all four limbs… In my head, I realized, it could always be worse.”

That’s not to say that Mitchell walked straight from the hospital into the powerlifting gym. He instead struggled with depression and found himself reliant on the narcotics his doctor had given him. “Luckily, I had a reckoning that kind of sparked me out of that whole little funk,” he explains. He went to Disneyworld with his wife and daughter to celebrate her third birthday, but found himself stopping after walking less than a block to take some pills. He realized that he wasn’t even able to walk around with her and enjoy it. “That was my whole turning point, realizing that I wanted to basically become better and get better for her.”

Doctors often recommend against quitting narcotics cold turkey, but that’s what Mitchell felt he had to do. He went home and threw out all of the pills in his cabinet, withdrawal symptoms be damned. He also swore off drinking that day. Soon thereafter, he started working out at a 24-Hour Fitness near his home.

Mitchell credits powerlifting for restoring his health and his confidence after losing his leg.

At first, he felt really insecure going into the gym. Although he’s 6’ tall, he only weighed around 170 lbs., and he wore sweatpants because wasn’t confident with his leg and didn’t want people staring at him. But as he continued to train, he started feeling better, and soon he noticed that he was moving around better, too. He began to regain his energy. He noticed he was starting to get a lot stronger, too—and his confidence came with it. And he feels more comfortable with his prosthetic leg as well. “I just rock it. No need to put a fake one on to make it look real. It is what it is.”

“I just rock it. No need to put a fake one on to make it look real. It is what it is.”

After a year of working out at the box gym, he went to a powerlifting competition in Las Vegas to see some of his friends compete. After watching it for the first time, he knew that was what he had to do. So he switched to a powerlifting gym and started training. Now, after two and a half years of training, he’s 240 pounds of muscle.

Despite his prosthesis and injuries to his other leg, Mitchell doesn’t compete in the Paralympics, or in single-lift bench press competitions where other athletes with missing limbs compete. “I can do what able-bodied athletes can do, so there’s no point in competing against disabled athletes. I can challenge myself more when I compete against able-bodied athletes,” he says. And though his range of motion and mobility cause his form to look a little different than other athletes, he’s definitely giving them a run for their money.

You can follow K.C. Mitchell on Twitter and Instagram.

The Good Fight

Giving Mexico New Wheels and Limbs

In Arizona, a group of paraplegics and amputees work to provide affordable wheelchairs and prosthetic limbs to those south of the border.

It’s a sad but true fact that incidents of disability and chronic illness are higher amongst those who can least afford to not be healthy. This is as true in Mexico as it is in the United States, where as many as 2% of the population – or over 2 million people – live with a disability, most of them well below the poverty line. And how much help does the government of the 11th most populated country on Earth provide?

To answer that question, William Neubauer, a retired surgeon living in an old cowboy ranch near the Arizona-Mexico border, likes to tell a gruesome story. Running up the waist of Central America from Venezuela, there is an ad hoc network of trains used by migrants to cheaply and quickly reach the U.S. where work is more plentiful. But it’s not a safe trip. Colloquially, this network is known as El tren de la muerte, or The Death Train, and travelers don’t buy tickets. They ride on top, where they often fall off, plummeting beneath the wheels of the train.

Recently, Neubauer met a man who had lost his legs on the Death Train, 30 years prior. Yet in these three decades, this man had never once been helped by the Mexican government. “Here’s this guy, sitting there in this terrible rickety wheelchair,” remembers Neubauer. “He’s unable to work, Mexico didn’t provide him with anything.”

A worker in ARSOBO's wheelchair workchops creates the frame for a new chair.

A worker in ARSOBO’s wheelchair workchops creates the frame for a new chair.

So Neubauer did what he’s done dozens of times before. He gave the man new legs. Prosthetic legs, to be more precise. Along with wheelchairs and hearing aids, Neubauer distributes affordable prosthetics as part of ARSOBO, an American non-profit that crosses the Arizona-Sonora border to help underprivileged Mexicans living with disabilities.

The problem is huge. According to ARSOBO, while 2% of all Mexicans are disabled, a full half of that number – or 11 million people – are in need of a wheelchair. An additional 786,100 amputees need costly prosthetics, and 630,000 more live with serious hearing loss. But getting impoverished Mexicans the devices they need is Herculean.

Take wheelchairs, for example. In America, an entry-level wheelchair costs around $2,000. For those living on the bottom rung of Mexican society, that might as well be $200,000, and even if they could afford it, the wheelchair design is completely unsuited for the realities of day-to-day life. Their tiny front wheels get stuck in the cracks and drainage grates that are ubiquitous through Mexican cities. The wheels, meanwhile, can not easily traverse Mexico’s ubiquitous unpaved roads.

Another ARSOBO worker helps craft a colorful prosthetic leg.

Another ARSOBO worker helps craft a colorful prosthetic leg.

ARSOBO’s answer to this problem? Design a better wheelchair. Instead of distributing off-the-shelf wheelchairs, they pair those in need with a specially designed wheelchair created by Ralf Hotchkiss. A wheelchair-rider himself, Hotchkiss’s design is called the RoughRider, a super-durable chair with a 2mm steel frame that uses mountain biking wheels and extra-wide front wheels to allow riders to easily traverse rugged conditions. “They’re basically unbreakable,” Neubauer brags, but if they do break? They use simple bicycle wheels, meaning they can be repaired in any small town bike shop for cheap.

Instead of costing $2,000 to make, ARSOBO can produce a RoughRider wheelchair for less than $300. Even that, though, is subsidized by ARSOBO’s state-side donors. The end cost to the rider-in-need, Neubauer says, is whatever they can afford to pay, even if it’s as little as a few dollars. (“My job is to make this very bad business plan work,” laughs Neubauer.) But they have to pay something. “Buy-in is important. If you just give someone something, they don’t value it as much. They can’t take pride in it the same way.”

This concept of buy-in is one that’s important to ARSOBO all around. Like their wheelchairs, ARSOBO expects the people who need their prosthetics (which are even more expensive to manufacture and custom-fit) and hearing aids to pay what they can. But ARSOBO itself also buys into the community of paraplegics and amputees it supports. All ARSOBO chairs and prosthetics are manufactured by native Mexicans who are in wheelchairs or amputees themselves. Asked why ARSOBO makes a point of hiring these employees, Neubauer says that it’s only in part because the best person to mod a wheelchair or a prosthetic limb is someone with the experience of living one. It’s also a simple issue of humanitarianism. “In Mexico, if you have a disability, it’s incredibly hard to find employment,” he says. “If we didn’t employ our workers, they just wouldn’t be employed.”

One of the many people ARSOBO has helped.

One of the many people ARSOBO has helped.

Asked if he finds being surrounded by such poverty and disability depressing, Neubauer sounds like he thinks I must be crazy. “Are you kidding?” he scoffs. “Before I did this, I was a surgeon. I did over 25,000 operations, and I was proud of everyone, but right now, on a one-by-one basis, this is easily the best thing I’ve ever done.” The chance to make a positive impact on a beautiful but disenfranchised person, to help them reclaim their life, is simply without parallel.

Listening to Neubauer’s stories about the people he’s helped, it’s easy to see what he means. He talks about a little girl who was put into an orphanage because of her debilitating cerebral palsy; it was only after ARSOBO provided her with a wheelchair that she was able to be adopted, and now lives in a loving household with her grandparents, who couldn’t previously care for her because of her extreme mobility issues. He talks about a little boy born without arms and legs, whose biggest complaint about his ARSOBO-provided prosthetics was that he wasn’t growing along with his friends… until ARSOBO made that happen too. And he speaks about a gorgeous young 20-year-old woman who, after being bitten by a tick, lost both arms and legs to sepsis. Today, she walks around on computer-controlled prosthetics worth a quarter-million dollars, thanks to ARSOBO.

“Who would be depressed to take part in that?”