by Jessica Long
My mom says that the night before my surgery was really hard for her. My family loved every part of me, including my little half-formed feet that were going to be amputated, but they knew it was necessary. My mom cried. She and my dad prayed that I wouldn’t experience much pain, that the doctors would be precise and alert, and that my eighteen-month-old self wouldn’t feel a loss because of no longer having my feet. The following morning, we drove to Saint Agnes Hospital, where Dr. Robert Bright would perform the surgery. My mom was fighting tears, so my dad held me a lot of the time while we waited.
My grandparents were struggling with emotions too, but I’m told I was happy until the nurses came to take me for the surgery. By then I was starting to get hungry and fussy, but my mom wasn’t allowed to go in with me. Still, my parents made sure to send my little doll with me. They had cut off her feet and bandaged her legs so she would look just like me afterward.
My baby doll with missing feet just like me.
When I woke up in the recovery room, the doll was lying by my side. I could see red poles coming out of the casts wrapped around my legs. They were my first pair of prosthetics, my pole legs. Within twenty-four hours of waking from my amputation, I stood up on that first pair of legs, balancing there in the middle of the children’s playroom in the hospital. My parents had made an appointment with a physical therapist, but I was walking around on my prosthetic legs so soon that they canceled it.
My baby doll and my dad—what more could a little girl want while getting ready for surgery?
Learning to walk, balancing on my prosthetic legs.
Even at such a young age, I knew I could do what everyone else was doing. That determination, along with a fiercely competitive spirit, made everything a race between my siblings and me. Oh, you think you’re going to finish your ice cream before me? Guess again. Walking through the door? I will push you out of the way to get inside first. Don’t even get me started on board games. If I wasn’t good at the game, I didn’t want to play it. I was determined to dominate at everything I did.
As I grew, I would have to go back for several revision surgeries to remove the bony overgrowth so my bones wouldn’t puncture through the skin. Afterward I would use crutches or occasionally a wheelchair to help me get around while I healed.
Climbing on top of the refrigerator was a favorite pastime of mine. I would scramble from the countertops to the fridge and hide behind the cleaning products. I was unbeatable at hide-and-seek. My siblings quickly caught on to my strategy, but it was years before my mom found out that I used to hide up there. It was a daily goal of mine to see how much I could sneak past my mom and how much I could get away with. I’m not sure how she homeschooled six vastly different children while still maintaining a semblance of sanity, but my mom is incredibly kindhearted and strong, and she always encouraged me to try new things and be the best I could be.
I’m going to assume my dad is the one who let roller skating in the house take place while my mother took care of new baby Hannah, circa 1996.
I made the daily choice to not let anything hold me back, especially my legs. Now, even when I am too tired or too sore to put on my prosthetics, I still make that choice. I choose to rely on my competitive nature and determination to be as tough as I was after that first surgery. I refuse to let that little girl down by giving in.
4
The moment I discovered water
More than anything, I love being surrounded by water. Fully immersed in that relentless, translucent, beautiful element, I feel at home. I’m alive there. It gives me a sense of freedom—the freedom of not feeling disabled or limited. I used to say that swimming was my escape, but that’s not accurate. Swimming forced me to deal with the things I wanted to escape. It helped me work through a lot of feelings and frustrations, because I had hours under water just to swim laps and think. I had the freedom to be alone with myself, completely unlimited by my circumstances or my body while doing what I loved. I think that’s why I took to swimming with such ease. All my life I have had to fight to catch up with people. But not in the water. That’s the one place where everyone else is trying to keep up with me!
Poolside kisses with Momma Long.
I’ve always been an observer. I watch people interact with one another and see how they move through life. When I was younger, I would observe the differences between them and me. Sometimes, when I saw how people had things easier than I did, I envied them. It’s hard to describe, but when I look back now, I can see how some people in my situation might have given up. It’s easy to get carried away by negative thoughts—that comparison game. But when I found swimming, it was This is what I’ve been waiting for. All those times in recovery from infections or surgeries, wondering why this was my life. I had so many things built up inside of me that I wasn’t sure what to do with, and swimming was the key. I found the thing I was made for, and it was a relief.
When my prosthetic legs are off, I do everything on my knees. I walk, run, jump, bounce, and play. My parents got me involved in gymnastics when I was four years old as a way to channel my energy into movement. I loved the uneven bars, the trampoline, and flying into the foam pit. I thought doing cartwheels and flips was the coolest.
I wore tights in the gym to help protect my knees from bacteria. My legs can easily become infected if I get a cut.
Working on my balance beam skills as an eight-year-old.
Unfortunately, my parents worried about the constant pressure on my knees each time I landed. They were afraid I was putting too much pressure on my joints. I still remember the day they sat me down and issued an ultimatum. They told me I could continue with gymnastics if I would try it while wearing my prosthetics, or I could find a new sport that would be gentler to my knees. At the time, my legs were not as advanced as they are now and I relied on a suction system to hold each prosthesis in place. If someone stepped on my foot, I would pop right out of my leg. Imagine trying to do gymnastics while balancing on stilts—constantly afraid that someone will step on your foot and you’ll end up on the floor, or worried that a leg might shoot across the room into someone’s face while you are doing a flip. I didn’t really have much of a choice. I had done gymnastics for six years, and it was hard to say goodbye, but I refused to wear my legs in the gym. So off to the next sport! I tried basketball, cheerleading, ice-skating, skiing, running, and rock climbing. But the thing that stuck was swimming.
I had always loved being in a pool. My family had lunch at my grandparents’ house every Sunday after church, and as soon as the weather was warm enough, they opened their pool. I love my grandparents, and visits to their house were always the best. They had cable TV and provided an endless supply of Popsicles and watermelon.
I did gymnastics for six years before making the switch to swimming.
FAVORITE TV SHOWS:
GOSSIP GIRL AND GILMORE GIRLS.
But the best part was my grandparents’ peanut-shaped pool. Rain or shine, I was always in that pool. It’s where my love for swimming started. For hours upon hours I played mermaid. Alone or with my sisters, I would tie my little legs together and pretend I was lost at sea and had to befriend the dolphins to help me get back home. Or I would throw my necklace into the water and then dive around the pool until I found it. Since mermaids can see underwater, I rarely bothered with goggles. I would stay in the pool until my eyes were bloodshot and my fingers wrinkled. I was always the first one in and the last one out of the water.
Getting some new bling at the USA Swimming Disability Championships in 2003.
My first swim coach, Miss Stephanie.
Looking to the scoreboard after my swim at the 2004 Paralympic Trials.
When my grandmother read about a local swim team in the newspaper and mentioned it to me, I figured, Why not? It was a sport I could do without my prosthetics, and I already knew I loved the water. I joined Dundalk-Eastfield Swim Club (DESC) when I was ten, knowing only two of the four strokes—freestyle and backstroke. On the day of my
first practice I was very nervous. I was the only girl without legs, but that wasn’t new to me. I jumped into the cold water and did the best I could. The butterfly stroke was explained to me on my first day of practice, but it took me a few days to learn how to pull my body up out of the water without getting a mouthful of chlorine. The first time I did a full lap of butterfly all the way across the pool, I thought I would drown. Thankfully, I’m a fast learner and I pay attention to details, so I picked it up quickly and continued to get stronger and faster. I couldn’t help but fall in love with the sport. During practice I felt as if I were on autopilot, as if my mind were a thousand miles away, but my arms kept moving, stroke after stroke. I kept going back to swim practice because I loved the feeling of racing, continuously trying to beat my previous time. I enjoyed swimming against the girls with legs, and I thought it was pretty awesome when I could beat them. I technically had a disadvantage with my legs, but I had strong arms, and I was fast.
I thrived on the competition and on being surrounded by other swimmers who encouraged me. I also fell in love with the team and admired how the girls treated me as an equal competitor. They didn’t seem to notice that I was missing my legs. In fact, most people didn’t realize they were missing until I got out of the pool.
I’m happiest in the water.
5
The moment I was surrounded by people like me
A little over a year after I started swimming, Linda Sue Lottes, the adaptive swim chairperson for Maryland Swimming, approached my dad and said that I might be fast enough for the Paralympics. At that time, we had never heard of the Paralympics, only the Olympics and Special Olympics. After doing research, we found that the Paralympic Games is the second-largest multi-sporting event in the world—a major international competition for athletes who have a range of physical disabilities. There are twenty-two Summer Paralympic sports, ranging from sitting volleyball to judo to wheelchair basketball . . . to swimming.
The first Paralympic Games was held in Rome in 1960. It was called the Paralympics because it is parallel to the Olympic Games. Paralympians compete two weeks after the Olympics and use all the same venues. Gold, silver, and bronze medals are awarded for first, second, and third place in each event.
Once I learned about the Paralympic Games, I became obsessed with the idea of racing others who were like me. I started training harder than ever in practice. Even at eleven years old, a year out from the 2004 Paralympic Games in Athens, Greece, I set a goal to make that Paralympic Team. When I was eight, after an afternoon of playing mermaid in my grandparents’ pool, I took a break and found the rest of my family gathered around the TV. I was curious to know what everyone was watching, so I asked. They told me it was the Olympics, where “the best athletes in the world come together and compete for a gold medal.” I knew right then and there that I wanted to become an Olympian. Now I knew I could live that dream through the Paralympic Games, and there was nothing I wanted more.
Haven Shepherd is a bilateral amputee like me. I love being her mentor.
The Long sisters (Amanda, me, Hannah, and Grace) in Athens, Greece. I’m not sure what I would do without my crazy sisters and their constant support.
Coming up for a breath in my favorite swim stroke, butterfly.
Qualifying for Athens and winning three gold medals in 2004 fulfilled that dream, but there was something about the experience that had even more of an impact on me. As a little girl, I had never seen another double amputee my age. Imagine what that was like for me—never seeing another young girl who was missing her legs. Suddenly I was thrust into a world of passionate, inspirational athletes with disabilities. There is nothing quite like being on a pool deck surrounded by other amputees. I didn’t have to worry about acceptance or feeling different. It’s an exclusive club—you have to be missing an arm or leg to be part of it.
With my swim coach, Andrew Barranco, who has coached me on and off for my entire career.
Tiny but determined . . . to earn a place on the U.S. Paralympic Swim Team.
Once I entered the Paralympic world, I was constantly meeting people with paralysis, dwarfism, cerebral palsy, and multiple sclerosis. I met blind athletes, paraplegics, and military vets who had lost limbs overseas. At a Paralympic swim meet you’ll find wheelchairs and prosthetic arms and legs all around the pool deck. It looks like a war zone. Some prosthetics have fake skin and are painted to look real (I always liked mine to look real), and others are just exposed poles and mechanical parts. It’s hard to put into words how incredible it felt to discover that I wasn’t alone. It all just felt right.
One of my early idols was Erin “Po” Popovich. She was a competitive swimmer in the S7 classification and the nicest girl I had ever met. She had confidence that was contagious. She was constantly smiling in and out of the pool and was a friend to everyone. I had the opportunity to race her in the SB7 hundred-meter breaststroke. I drop down a class for breaststroke (I’m an S8 in every other stroke), as that one relies more on leg power. Throughout the years we constantly fought each other for the fastest time, always touching the wall in first and second place. I never minded losing to her, though of course I swam my hardest to win. She retired in 2010 after the World Championships.
Every little girl needs a hero, and that’s what Erin was for me. In 2012, during the Paralympic Games in London, after she had retired, I won gold in the hundredmeter breaststroke, the event she had won four years earlier in the Beijing Games. We received flowers on the podium, and I knew right away who I wanted to give my flowers to. Po was working as a classifier at the meet, so I left the bouquet and a note on her bed. If she couldn’t be on that podium with me, I was determined to share part of it with her.
The Paralympics gave me newfound confidence in my prosthetics when I went back home. I started wearing shorts and showing my knees, no longer caring if everyone knew I didn’t have legs. I still found myself getting annoyed when people would stare, but I was more willing to answer kids’ questions and explain that I was born this way and it wasn’t a big deal. If I’d had legs, I wouldn’t be in the Paralympics and wouldn’t have met the amazing athletes and made the friends that I had. I felt as if my life had meaning; my “disability” had meaning. I still had hard days, where I was angry and in pain, and I just wanted things to be easier, but now I had people I could call, people who would listen to me vent, who were dealing with the same thing. I had found a second family—a family of intense, beautiful, determined daily warriors . . . just like me.
Competing for a place on the U.S. Swim Team at the 2004 Paralympic Trials.
6
The moment I became a professional athlete
Freestyle event in the 2016 Paralympic Games at the Olympic Aquatics Stadium in Rio De Janeiro, Brazil. Swimming my way to gold in my favorite Arena cap and goggles.
It’s April 2007, and I’m dressed in a beautiful bright red dress and seated in a fancy auditorium. Suddenly I look around and realize that everyone is looking at me. It takes a second for my brain to process what was just announced. Oh my gosh, they called my name! My hands had already lifted to start clapping for the winner, so instead I put them back down awkwardly and pushed myself up out of my seat. I walked to the podium to receive the award I had just won over Michael Phelps, Sasha Cohen, Apolo Ohno, and a bunch of other amazing athletes who had been nominated. The James E. Sullivan Award is presented by the Amateur Athletic Union and is awarded annually to “the most outstanding amateur athlete in the United States.” I really went to the dinner in New York City only to meet some of these athletes I so much admired. My dad and sister were my dates for the evening.
WHOM I LOOK UP TO:
STEVE LONG, A.K.A. MY DAD. I ADMIRE HIM FOR HIS LOVE FOR OUR FAMILY AND EVERYTHING HE HAS DONE FOR ME.
Being honored as the recipient of the seventy-seventh Amateur Athletic Union Sullivan Award, presented to the USA’s top amateur athlete. I was the first Paralympic athlete to win the award.
I had my dad and si
ster Hannah there to experience the event and meet the other athletes with me. You can kind of see my smudged makeup from crying after I won.
I remember my dad trying to prep me in case I won, wanting me to be prepared with something to say. I brushed him off as most sassy fifteen-year-olds do, assuming I knew how things would play out.
I wasn’t going to win this one. But there I was, walking toward the podium with tears in my eyes (and wishing I had a speech prepared!). I thanked them for honoring me as the first Paralympian to ever win the Sullivan Award, and I stumbled through something about how I just loved to swim. I was so proud to be recognized for my hard work and dedication to the sport.