Bodybuilder Becomes Crohn's, Keratoconus Advocate Because of Machine Gun Kelly

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Bodybuilder Becomes Crohn's, Keratoconus Advocate Because of Machine Gun Kelly
Associated Press

Before hip-hop artist Machine Gun Kelly (MGK) was spending time with Cleveland Cavaliers point guard Kyrie Irving and owner Dan Gilbert at the NBA All-Star Game, he lived a painful childhood.

When MGK was nine years old, his mother cheated on his father and abandoned them, according to the artist's official website. While a broken home brought MGK emotional suffering, bullying brought physical suffering.

“People want to be my friend, but where the f--k were y’all when I was 10, 11 or 12 getting bullied and beat up in the gym?” says MGK on his song “The Return.”

MGK turned to battle rapping as a defense mechanism. And he thrived.

But in 2010, a physical ailment, which he also mentions on “The Return,” jeopardized his hip-hop dreams.

For six months I went through hell and back/right at the height of my success all of the sudden doctors said I couldn’t rap/I had a polyp on my vocal chords/Left with a choice, stop now or possibly lose my voice/But I woke up and recorded every morning till my throat swole shut/Coughed blood after every show because it hurt that much.

“Every night I'd wake up at 4 o'clock in the morning wanting to blow my brains out,” said MGK.

He proved doctors wrong, though. MGK fought through the pain and beat the odds. In 2011, he signed a contract with Bad Boy Records, a label under Universal Music Group owned by Sean “Diddy” Combs.

The month after MGK signed, he performed at a concert in Kent, Ohio, and threw copies of his Lace Up mixtape into the crowd. His fanbase is called the “Lace Up” movement, a cult-like following characterized by a never-quit-no-matter-what mentality and acceptance of everyone, no matter how different. One of the copies that MGK threw landed in the hands of someone this message would change the life of, Ian Barnes.

Photo courtesy of Ian Barnes
Barnes used to be normal. Like 20 million other American kids, he grew up with a ball in his hands. But after a Little League Baseball game 12 years ago, Barnes’ body did something 20 million American kids' bodies don’t experience: it attacked itself.

That night, Barnes vomited for hours, prompting his parents to rush him to Trumbull Memorial Hospital in Warren, Ohio. Doctors assumed he had food poisoning. But after days without relief, Trumbull medevaced him to University Hospitals of Cleveland for further examination.

Tests revealed that Barnes had an E. coli bacteria infection and Crohn’s disease. Untreated, both are deadly. University Hospital doctors told Barnes that had his condition gone undiagnosed for another day, he would’ve died.

The E. coli shut down his intestines. For a week, he ate nothing. He lost 20 pounds as an IV supplied the nutrients and medicine that kept him alive.

Crohn’s, an incurable inflammatory bowel disease which 700,000 Americans suffer from according to the Crohn’s and Colitis Foundation of America (CCFA), is what changed his life forever. When Barnes finally came home, he returned to sports within the month, playing with an IV plug in his arm. He loved sports, but—after missing the last two weeks of fourth grade—a motivation other than playing ball again drove him to play ball again.

“I just wanted to be normal,” said Barnes.

Normal became popping pills every morning, early afternoon, midafternoon and night—18 pills a day for a child who had never swallowed one. He couldn’t escape the fact that things would never be the same.

“No matter how much I tried to distance myself from it,” he said, “I always had daily reminders."

Barnes kept those daily reminders a secret.          

“[Ian] didn’t want people to think he had a disease that would make him unable to play at 100 percent or be the same Ian that he was before,” said his mother, Beth Barnes.

Ian remained unaware of the technicalities of Crohn’s until high school. All he knew was something was wrong with his stomach, and certain foods caused vomiting, diarrhea and cramping sometimes so painful that he needed to be hospitalized for morphine.

He didn’t want to know more. He just followed the directions of his doctors and parents.

And Barnes followed directions well. Doctors told him to stay as active as possible because children with Crohn’s typically develop thinner than most their age. But the 500 pushups and crunches an 11-year-old Barnes started doing daily made any stunting of growth unnoticeable.

Sharon Ellman/Associated Press
Professional athletes such as quarterback David Garrard and offensive tackle Matt Light have overcome Crohn’s to achieve NFL success. But they were diagnosed as adults. With developed bodies, they avoided symptoms related to growth.

Barnes, an aspiring basketball player, only finally Google searched “Crohn’s disease” when, in the middle of his ninth grade season, his body once again attacked itself.

He awoke one winter night shaking uncontrollably. He had never felt colder, but not because of the season. Sweat dripped off of him.

His mother climbed in bed and held him tight. But his shivering still shook the bed. These are symptoms of a severe Crohn’s flare-up.

An ambulance again rushed him to the hospital. Nurses measured his temperature at 105.5 degrees.

Barnes stayed overnight but only missed three practices before returning for the next game. He refused to allow Crohn’s to stop him from accomplishing his dreams like any other teenager.

Determined to earn a basketball scholarship, the weight room became Barnes’ home away from home the summer before his junior year. He worked out three hours a day, seven days a week. In three months, he gained 20 pounds of muscle.

Photo courtesy of Robert Jinks

The formerly slim Barnes stood at 6’0”, 175 pounds entering the season. Then, the week of tryouts, he had another flare-up.

Stabbing stomach pains overwhelmed him. The pain was so excruciating he couldn’t stand up without help. At an urgent care center, he passed out from the pain.

Barnes spent three days in the hospital. Before he left, he had lost every single pound that he trained hundreds of hours to gain.

And he played the first game of the season. Barnes told his coach he had suffered a bad flu.

“I didn’t want to be viewed differently than any other kid on the team,” said Barnes.

His dramatic weight loss limited him to a reserve role that season. When it ended, Barnes returned full time to his religiontraining.

Two hours a day, he lifted. Two more hours a day, he played pickup basketball. Another hour he spent practicing by himself—seven days a week, all summer.

Barnes started his last high school campaign at 6’1”, 180 pounds. In one year, he went from the bench to the focal point of Champion High School’s offense. Finally fully healthy, Barnes averaged 15.0 points, 4.0 assists and 4.0 rebounds per game.

Photo courtesy of Ian Barnes
His performance earned him All-American conference and all-county first-team honors and attracted recruitment from scholarship universities including Northern Kentucky, Pfeiffer and Mount Olive. He also graduated with a 4.0 GPA. Champion head coach Dan Bubon raved about Barnes to a local newspaper during the recruiting process.

"To be cliche', you wish you had 12 of him every year," Bubon told the Tribune Chronicle (subscription needed). "He's an extremely hard worker, is extremely intelligent and very selfless. He could have easily been very, very, very greedy this year because he's one of the best players I've had.”

To play close to home, Barnes committed to Geneva College, a Division III school in Beaver Falls, Pennsylvania. But Geneva was his last choice. After his list of colleges began to shrink due to location, it shrunk even more when he struggled in recruiting workouts.

Barnes’ jump shot, which he admits was never a strength, declined. This led Geneva head coach Jeff Santarsiero to move Barnes, who had always played point guard, to forward. Barnes struggled.

Shooting free throws after practice became challenging. He shot air balls sporadically.

Barnes quit the team after a frustrating freshman season. Other than playing in a new system out of position, something he couldn’t identify felt wrong about his game. He instead chose to focus on school, as well as another athletic pursuit he thought he actually could go pro in, bodybuilding.

Few outside of Barnes’ family still knew he had Crohn’s, though. And he wanted to keep it that way. He feared being treated differently and, as a result, rejected.

However, the summer before his sophomore year, Barnes' favorite music artist, MGK, inspired him to face his fear. After Barnes caught Lace Up, it instantly became Barnes’ workout playlist. And MGK’s transparency in his music, despite his painful past, inspired Barnes.

Listening to track No. 3, “End of the Road,” the following lines convinced Barnes to share his story.

“‘Cause the one that fear change be the one that don’t care/Look at themselves and see somebody else in the mirror.”

Photo courtesy of Robert Jinks

At this point, Barnes was 19 years old, 195 pounds and could bench press 300 pounds in spite of Crohn’s. When he looked in the mirror, he saw someone with a disease that typically caused weight loss, stunted growth and weakened bones who wasn’t supposed to be so healthy.

"People with Crohn’s disease have difficulty in absorbing all the nutrients that their bodies need and may need to maintain a modified diet in order to manage their symptoms,” said Dr. Steven Czinn, chief of pediatrics at the University of Maryland Medical Center. “Luckily for bodybuilders, some of the same eating habits that are recommended for such athletes are also a plus for those with Crohn’s … Exercise is also a great stress reducer, and eliminating stress is one key component of managing the symptoms of Crohn’s disease."

Barnes thought his story might help others with Crohn’s but had kept quiet out of fear of being defined by his disease.

But no more.

“I yearned to share my story because internalizing it ate me emotionally,” said Barnes. “After hearing MGK open up about his struggles through his music and seeing how he inspired people to overcome adversity, it made me want to share mine.”

Barnes began sending weekly emails to dozens of magazines asking if they’d share his story. Eventually, one showed interest: Muscle & Body.

The magazine featured him in its achiever section that December. Geneva students now knew why he needed to live off campus and eat the strictest diet they’d ever seen. But his embarrassment over having a bowel disease paled in comparison to the joy he received from helping the hundreds of people with Crohn’s who emailed him for advice.

Barnes never imagined he could make such an impact. And he conquered his fear in the process. Just weeks later, though, Barnes found out what felt wrong about basketball his freshman year.

Barnes always had 20/20 vision. When he couldn’t read the advertisement billboards in the gym his freshman year, he thought nothing of it. But after he no longer could read without glasses, and his mother found him with his face six inches from a computer screen over his sophomore winter break, he took an eye exam at JCPenney.

The eye doctor gave Barnes the routine “Which looks better, one or two?” test.

“Neither,” Barnes repeatedly answered, cueing the doctor to run a series of more advanced tests on Barnes’ eyes.

Barnes had been able to control Crohn’s by religiously following protocol and strengthening his body. But when the doctor told Barnes he had keratoconus, an incurable degenerative eye disease, for the first time, Barnes’ health was out of his hands.

He felt powerless.

“Both Crohn’s and keratoconus, separately, can be debilitating,” said Czinn, the MD who saved Barnes’ life, “and in the rare instance that someone has both disorders, the outcome can significantly affect the health, wellness and quality of life of the patient.”

The inspiration to the Crohn’s community and anchor of his family cried the whole way home. A study conducted in 2010 by researchers in Israel identified an association between Crohn’s and keratoconus. All the physical setbacks Barnes had conquered seemed in vain after being met with yet another, less controllable one.

But Barnes refused to let his family see his pain.

“This is something that takes the breath away from everyone in your family,” he said. “Obviously it’s hard for me to hear, but I want to put on a strong façade for my family because if they see me strong during it, maybe they can be strong too.”

MGK fueled that strength. And Lace Up became the soundtrack to Barnes' survival.

Photo courtesy of Robert Jinks

“It felt like [MGK] was speaking to me personally,” said Barnes. “He had his struggles, and I just drew upon how he overcame his struggles to overcome mine.”

Barnes initially overcame keratoconus by laughing it off.

Earlier that month before his diagnosis, another outlet, I.G. Living!, had picked up his story about conquering Crohn’s. In a blog post headlined “Rise above the Negativity,” it used Barnes as an example alongside Helen Keller and Beethoven.

On January 3, just a week after learning of his keratoconus, Barnes’ family gathered to celebrate his birthday. The party was somber, until his grandfather tenderly asked Ian how he felt about his latest grim diagnosis.

“S--t papi,” Ian laughed. “Damn people from I.G. Living! were right. Helen Keller and Beethoven were blind. I’m going blind.”

While Beethoven went deaf, not blind, Barnes’ ability to joke about the irony lifted his family’s spirits.

To overcome keratoconus long term, Barnes either needed surgery or a cornea transplant. He didn’t want a cornea transplant.

"[Transplants] carry significant risk,” said Dr. Brian Boxer Wachler, a keratoconus treatment pioneer. “One thing doctors very seldom talk to patients about: after someone has a cornea transplant, their eye is never as strong as it was in the natural state ... If someone gets hit in the eye, it’s much more likely to rip open the transplant and even have the contents of the eye come out. That can cause blindness, and even the loss of the eye itself.

Boxer Wachler invented a less invasive procedure to treat keratoconus in 2002 called C3-R, later renamed Holcomb C3-R after United States Olympic bobsledder Steve Holcomb. Keratoconus had blurred Holcomb’s vision to the point he nearly quit bobsledding in 2007. He wouldn’t have recovered from a cornea transplant in time to compete in the upcoming Olympics.

Shaun Botterill/Getty Images
Then his coaches found Boxer Wachler. Holcomb underwent the surgery and won gold in the men’s four-man bobsleigh at the 2010 Winter Olympics and, in 2014, bronze in the four-man and two-man.

But Barnes’ insurance didn’t cover Holcomb C3-R, which would’ve cost him $30,000 without it—$30,000 his family didn’t have. This left him with two options: Find some way to get the surgery or go legally blind before getting a cornea transplant.

Barnes returned to college in January. He tried to cope by sitting in the front of every classroom and reading with a magnifying glass. But the challenge to see remained so difficult that the possibility of dropping out became a reality.

Then, in February as he exited class, his mother called.

“You won’t believe this,” she said. “Dr. Brian’s office called me. You’re getting the surgery done. We’re leaving tonight.”

Ian’s heart skipped a beat.

His mother had contacted Boxer Wachler about the surgery—that much Ian knew. What he didn’t know is that shortly after, CBS’s Emmy Award-winning television show The Doctors had asked Boxer Wachler to perform some surgery for a segment on night blindness.

Barnes was the perfect candidate. In exchange of appearing on the show, his fee for surgery would be waived. Hours after the fateful phone call, he joined his mother on a plane to Los Angeles.

The surgery was successful, as was his post-surgery workout at the local LA Fitness the following day. He needed to “look buff” for the filming, which he also prepared for by walking three more miles to Marshalls that night to complete his outfit.

Barnes has dedicated his life to inspiring others to overcome their obstacles, just like MGK inspired him. He identified with the never-quit-no-matter-what and accept-everyone-no-matter-how-different attitudes of MGK’s Lace Up movement.

"I’m easy to judge based off how I look and what my reputation is, but it’s a lot deeper than rap,” said MGK. “I would die before I ever lost the meaning of what we started [the Lace Up movement] for. Even if only 500 people in my whole career really understood it, that’s enough for me. One person’s enough for me. Ian’s enough for me."

Barnes spent his final semester at Geneva student teaching at Highland Middle School in Beaver Falls, Pennsylvania. He plans on becoming a teacher to change the lives of students who were just like him—not necessarily kids with Crohn’s, but ones afraid of being different. Several of his students actually reached out to express how much Barnes meant to them this spring.

“My life has changed drastically since the day I met Ian,” said Taylor Lambright. “When I heard his story and how he has dealt with the hardships in his life, I knew I could get through the hardships in mine.”

“Ian has made me a way better person by only being my teacher for a few months,” said Trent Michael. “He was always doing something to help someone besides himself.”

“Now I know that dreams really do come true,” said Morgan Mine. “He made me realize that if you work hard, the outcome will be worth it in the end.”

Photo courtesy of Robert Jinks

This spring, Barnes signed endorsement deals with BarnDad Nutrition and SmartShake. He’s no longer with BarnDad, but he plans on using the bodybuilding platform that he has to advocate for keratoconus and Crohn's, partly as a spokesman for the CCFA. And his mission even inspires the man who inspired him.

"If all of this falls down tomorrow, all this rap s--t goes away, I’m OK knowing that I can make a difference in people’s lives even on a small scale,” said MGK. “Ian had aspirations of being this athlete, and that was all taken away from him. But is he going to sit there, cry and think about what he was about to have? Or is he going to find another way to get it, which was him student teaching … That’s why I look up to Ian. His mind didn’t stay on the [court]. If you can move on and make an even bigger difference, then do it … Ultimately, all we have left in this life is the impressions that we leave on people who are going to continue living it."

The night Barnes returned from the hospital and his battle with E. coli 12 years ago, his mother rushed into her room to find him screaming on her bed. Panicky, she asked him what was wrong.

“Mom, there was an angel here taking me away,” cried Ian. “I told her I wanted to stay.”

Ian credited his angelic vision to the massive amount of painkillers he was still on. His mother isn’t sure what to believe.

“I just think,” she paused, “Ian has a bigger purpose for being here.”

Fittingly, a tattoo of an angel sits in the center of MGK's chest.

 

*All quotes obtained firsthand unless otherwise noted. 

*All photos of Barnes provided by RobertJinksPhotography.com unless otherwise noted.

David Daniels is a columnist at Bleacher Report. He tweets, too.

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