"OK, God, What's Next?": A High School Football Coach Faces ALS
High-school football coach Jeremy Williams was diagnosed with ALS in 2007. It wasn’t the first time that his family’s resiliency had been tested, and it wouldn’t be the last.
Courtesy Jennifer Williams
Three long blows of the whistle sent Greenville High School's football team rushing to Jeremy Williams. It was a Wednesday afternoon in September 2007. The Patriots were 2-0, but the team's players knew something was off.
Jeremy had missed practice the day before—a first for the head coach. He had been about 90 minutes east of Greenville's field, at a doctor's office in Macon, Georgia, with his wife and their young son. After two years of questions and tests, Williams finally got an answer. What was taking over his body finally had a name.
Now it was time to tell his players, who had gathered around their 35-year-old coach and taken a knee.
"When I [said] 'terminal illness,' that had half of them drop their heads," Jeremy says. "Then I tell them we are not going to let this distract us and now let's get ready to work."
For Jeremy, the time for tears had come and gone in less than 24 hours. He knew his life was in God's hands. It wasn't the first time that his family's resiliency had been tested, and it wouldn't be the last.
Jeremy Williams grew up about two hours southwest of Atlanta in Columbus, where he was a two-sport athlete at Kendrick High School. The only freshman to dress on the varsity football team, Jeremy soon made a name for himself, and went on to play free safety for Memphis State University (now known as the University of Memphis). In Tennessee, he realized things were a little different than they were in high school.
"I was smaller than the kickers," says Jeremy, who was 5'9" and around 170 pounds at the time. "My mom threatened to take me back home the first day we had to report when she just saw the other freshmen, and she was dead serious."
Jeremy was determined to prove that he belonged, though, and he wound up playing for the Memphis Tigers all four years. By the time he graduated, teammates were calling him "The Georgia Assassin."
In 1993, before the start of senior year, Jeremy married Jennifer Bolles. The two had gone to the same middle school back in Columbus, but didn't start dating until years later. After finishing college, they returned to Georgia, and Jeremy started coaching high school football. His first stop as an assistant coach was Manchester High School, where he helped guide the team to its first and only state championship in 1997. That same year, he and Jennifer bought a house in the small town of Pine Valley Mountain. In 2001, he accepted the head-coaching job in nearby Greenville. Their daughter, Josie, was born that Fourth of July.
"We had the perfect life," Jennifer says. "Just like how the movies picture a romance and newlyweds—that was us, honey."
The first major test of the Williams' faith came less than two years later, while Jennifer was pregnant with their second child. Twenty weeks into the pregnancy, a routine ultrasound picked up abnormalities, which subsequent tests confirmed were serious: a spinal defect called spina bifida as well as hydrocephalus, an accumulation of fluid in the skull. The baby would be paralyzed, doctors told Jennifer, and could be mentally impaired. An ob-gyn told her that she didn't have to go through with the pregnancy. Jennifer, a devout Christian, said that wasn't an option.
Jacob Williams was born in April 2003. He was paralyzed from the waist-down at birth. Jacob went into surgery the following day, and would undergo six or seven operations by the time he was two. For Jennifer, driving to Atlanta with Jacob for one doctor's appointment after another quickly became the new normal.
Jeremy Williams kept coaching at Greenville. A couple months after Jacob's second birthday, he was getting the Patriots ready for the upcoming football season. It was summertime and two-a-days.
A fight broke out during the second practice, and Jeremy helped break it up, dragging away an offensive lineman by the facemask. By the end of practice, the coach's left thumb had ballooned. Just a jam, a souvenir from breaking up the scuffle, he thought. But even after the swelling went down, Jeremy's thumb still wasn't functional. Must be a torn ligament, he told Jennifer.
Jeremy put off seeing a doctor. By the spring, his thumb had atrophied. Still, he thought it was just a torn ligament. A hand specialist didn't find any structural damage, so Jeremy and Jennifer kept searching for an answer. His nerves were tested. His shoulder was tested. His neck was tested. There were CT scans and MRIs. As time went on, the atrophy spread from Jeremy's left thumb to his left pinky finger. Then his right thumb stopped working. More tests followed, still nothing. By the 2007 season, the atrophy had crept up his left forearm.
Jeremy and Jennifer's answer finally came that Tuesday in September, in a doctor's office in Macon. Jeremy had amyotrophic lateral sclerosis, or ALS. Lou Gehrig's disease.
"We knew at that point it was a death sentence," Jeremy says.
ALS is a progressive, neurodegenerative disease that attacks the nerve cells responsible for voluntary muscle movements. As the motor neurons die, the body's muscles become unable to function; they weaken and eventually wither away, making it increasingly difficult to move, swallow, speak, and even breathe. For the most part, ALS leaves people's mental capacity unscathed, essentially trapping them inside their own bodies. There is no known cure for the disease, and while life expectancy for people with ALS can vary, it is inescapably fatal.
Around 6,000 Americans are diagnosed with ALS every year, according to the ALS Association; most of them are between the ages of 40 and 70. Jeremy was 35 years old. About five to ten percent of patients have inherited the disease, but for the vast majority, the exact cause is unknown. Research into environmental risk factors for the disease has yet to come up with any conclusive answers; studies have shown, for example, that serving in the military is a risk factor, though nobody knows why.
Scientists have also explored the connection between ALS and football, a sport whose brain-injury risks have come under increasing scrutiny the past decade. While a direct link between the sport and the disease is currently tenuous, one suggestive study, published in Neurology in 2012, looked at neurodegenerative causes of death among NFL players who had played at least five seasons from 1959 to 1988. It found that the mortality rate for ALS was four times higher than that of the general population. ALS is also among the neurological diseases covered by the NFL's concussion settlement, and eligible former players can receive up to $5 million, the highest amount available. (Former NFL player Kevin Turner, a named plaintiff in the class action concussion lawsuit against the league, was diagnosed with ALS but posthumously found to have chronic traumatic encephalopathy (CTE), a neurodegenerative disease found in many former football players and linked to repeated brain trauma).
Jeremy says that he and his wife have never asked his doctors directly about whether his own football career could have anything to do with his ALS.
When Jeremy received his diagnosis in 2007, he allowed himself about ten minutes of crying. "Then I went into 'OK, God, what's next?' mode," he says. "Any great coach worth his or her salt is always looking forward to the next play. That is how I am wired. Always thinking of the next play. So I told Jennifer that I needed some new shoes."
Jennifer was in shock. New shoes? But he got what he wanted. With his new pair picked out from a Bass Pro Shop, he began driving the 90 or so minutes to Greenville. He'd never missed a day of football practice, and an ALS diagnosis wasn't going to change that. Halfway there, he pulled over at a scenic lookout on Pine Mountain. He talked with God, he says, and then, instead of continuing to the practice field and football, Jeremy went home in order to take care of his wife. The couple had one day to cry, he told her, and then life would go back to normal. God had everything under control.
Back at practice the next day, the Patriots' coach told his team.
Jeremy's ALS slowly spread throughout his body. As the muscles in his legs grew weaker, he started coaching at practice from a golf cart in 2008. In 2009, he had a chair on the sideline at games just in case. Breathing and talking became increasingly difficult.
Greenville went undefeated that regular season—a first since 1992—and finished the year 11-1 after losing in the playoffs. The following spring, Jeremy won National High School Football Coach of the Year, an annual award from the National High School Coaches Association. He had been nominated for the honor by Andy Robinson, a complete stranger from Columbus, Georgia. Robinson had read an Atlanta Journal-Constitution article about the coach and decided to head about an hour north to Greenville to watch him in action. After the game, Andy went down to the field and waited to meet Jeremy as the coach praised God and both teams to a reporter, his ALS by now slurring his words.
"In listening to all that and having seen what I had seen, I just knew that this was a very special individual," Robinson says. "Anybody that saw him, anybody that saw what he was doing, and then when you heard him speak, you could just tell he was—he deserved it. I mean, I'm sure there were many other teams that won state championships and went 12-0 throughout the country, but there would be no one that could do a more inspiring job of coaching his players."
By 2010, Jeremy coached games from a motorized wheelchair, and would get so worn out that after the final whistle he'd need to lie down on the couch in his office, sometimes for several hours. His assistant coaches had no idea—Jeremy told them he was going over game tape.
"It was scary because he just started slurring his words—we couldn't really understand what he was saying sometimes—and the way it just took over his body," says Kentavious Caldwell-Pope, who was a wide receiver and cornerback for Jeremy at Greenville before playing basketball at the University of Georgia and, eventually, for the Detroit Pistons in the NBA. "He got worse and worse every day."
Jeremy retired from coaching on June 30, 2011. That fall, he was no longer able to breathe and speak on his own.
The Williamses have met their insurance deductible and out-of-pocket maximum every year for the past 13 years, ever since Jacob was born. He has had 13 surgeries in that time.
Jeremy's ventilator costs $1,500 a month. The medicine he takes every day to fight neuropathy costs about $100 a month, and isn't covered by insurance. Nor was the $1,200 chair that makes it easier for him to take a shower.
"There's almost not a day that goes by that we're not either getting a bill or an explanation of benefits," Jennifer says. "I mean, our house is the house of piles of paperwork."
Jennifer doesn't talk about the family's finances that much with people, including her husband. She doesn't want him feeling like he's a burden.
That doesn't stop people in Pine Mountain Valley from helping out, though.
After the Williamses learned about Jacob's spina bifida, someone at the family's church anonymously started a fund for the soon-to-be newborn; it's still active. After Jeremy was diagnosed with ALS, a letter-writing campaign petitioned Extreme Makeover: Home Edition for help on behalf of the family. About 1,000 letters were sent. In 2010, the show knocked on the Williamses' door and let them know they were about to get a new home.
"Jacob almost never was in his wheelchair in our house because he couldn't go into a lot of spaces," Jennifer says about the family's old home. "So, he actually pulled himself on the floor—like arm-over-arm, like commando crawling, but with his legs just kind of dragging behind him—and that's how he would get from one spot in the house to another spot."
The new wheelchair-friendly, ranch-style house wasn't the only thing the family received. The show got the local university to award both Williams children college scholarships. CVS Pharmacy paid off the medical bills the Williamses had at the time. Greenville High School's field house was renovated, too.
The family still gets help, including from funds and grants; occasionally, they find a random check in the mail from someone who wants to offer a helping hand. Dinners out get paid for from time to time by someone else. One local restaurant flat out refuses their money.
"That's one of those precious things about the situation that we're in is that our family really gets loved on a lot," Jennifer says. "So many people just could go their whole life and never be loved on the way people will love on our family."
It has been nearly ten years since Jeremy was diagnosed with ALS, and that alone means he has beaten the odds. According to the ALS Association, the average person survives about three years after the onset of the disease; ten percent of patients will survive ten years or more. But without a cure or a way to halt its progression, there is only one inevitable way that this ends.
For Jennifer, it's hard to watch her husband slowly lose his battle. She has had to be strong through it all, for Jeremy, for their children, and for herself.
In 2010, she went back to work after staying at home nine years to raise Josie and Jacob. Family members helped out at home to take care of the kids and Jeremy as he continued to grow weaker. In 2013, when she was 40, Jennifer received another piece of devastating news: she had breast cancer. She resolved to handle her treatment confidently, and didn't miss work as an assistive technology specialist for special-needs students. After a mastectomy and additional treatment, Jennifer is now healthy again and living cancer-free.
Jeremy's condition continues to worsen. He has been on life support since 2012. It has been about two years since he's been able to drive his silver-and-black motorized wheelchair on his own. Someone has to be with Jeremy at all times in case something happens with his life support equipment. Jennifer's mother fills that role during the day two or three times a week. A sitter stays with him a couple days each week as well. A registered nurse volunteers to stay with Jeremy a bit each month, too.
Despite all of this, Jennifer is quick to say she isn't the one running the household. That's Jeremy's job. As father and husband, he has final say on things.
"In many respects, he parents more now than he ever has because he's here," she says. Before, Jeremy was tied up for three or four months out of the year coaching football. "This is just where God can take something that is terrible, and turn it for good because although you would never want somebody to have Lou Gehrig's, on the flip side of that we come home every day to a daddy who is here and who is active in our lives and who is present."
Jeremy still remains active in his community, too. He gives his testimony at local churches, men's conferences and Fellowship of Christian Athletes groups about once a month. He co-leads a Bible study on Wednesday nights at his family's house. He loves turkey hunting—he does it roughly once a week with a friend during the spring. And if the weather is good, you can find him out on a Friday night watching high school football.
Coaching is still a big part of who he is and what he does, too. Jeremy uses eye-tracking technology to text with coaches, offering advice and tips. He breaks down film that coaches email him. He even added volleyball to his resume. Last school year, he helped with Josie's club and high school teams, using a computerized speech generator to assist with jump training, footwork drills, and weightlifting.
"Now, our life is so different," Jennifer says. "It's more about just like being, being in the moment. Cherishing every moment."
Balls zipped through the air one Saturday morning last September, as girls were warming up in Carrolton High School's gym. Over in a corner, the Williamses were settling in to watch Josie's high school volleyball team compete in a tournament.
Decked out in a Harris County High School shirt, Jacob bellowed encouragement. Jeremy and Jennifer watched, the latter splitting time being a fan with protecting her husband from the threat of a stray ball.
Josie and the rest of the Tigers racked up win after win, eventually taking the tournament's title. As a gaggle of girls gathered around the trophy, Jacob wheeled over to take pictures.
"It was wonderful," Jennifer says. For many, the day could've been seen as just another family obligation, just another Saturday, but for the Williamses it was another chance to make a memory and relish living in the moment. "Although we have adverse circumstances in our life, I think it's important not to focus on the bad, because we truly do live victorious lives."
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