- Steve Hummer The Atlanta Journal-Constitution
The words of a man who cannot speak come slowly.
Each complete thought, like scrimshaw carved from silence, is meticulous work.
I first met Jeremy Williams and his family while working on a series of stories on him in the fall of 2009. He was the head football coach at tiny Greenville High School — 60 miles southwest of Atlanta — working the sidelines, exhorting his team as he was dealing with the onset of Lou Gehrig’s disease.
My last vision of him then was of a coach consoling his team after a playoff loss, still able to stand in the middle of a huddle and tell a group of beaten teens, in a soft, slurred voice, to be proud of themselves.
Amyotrophic lateral sclerosis (ALS) has since stolen his voice as well as most of his muscular control. Williams today can coax slight, stiff movement from his right arm and thumb. Too soon he will awaken unable to manage even that. He is only 41, just 20 years removed from days on the college football field when he threw his body around with such careless disregard that his teammates called him “The Georgia Assassin.”
Now he wills that last working digit across the screen of his phone, slowly punching letters, freeing trapped ideas.
Just give him a little time — some responses may take as much as an hour to compose — and he will reveal himself from behind the cinder-block wall of ALS as a man who continues to battle an unbeatable disease on his terms.
When asked about his decision to prolong life as long as possible by going on a ventilator, Williams responds in an email:
The words of a man who cannot speak, just as the life of a man who will not quit, have unique power to them.
Back in 2009, the Williams family — wife Jennifer, daughter Josie, now 11, son Jacob, now 9 — became an inspirational beacon to a team and a community of less than 1,000 souls. It wasn’t just that Williams was leading a team that went undefeated in the regular season despite the growing physical obstacles of his disease. Here was a family, too, coping with the ever-present medical challenges of Jacob, born with spina bifida, paralyzed from the waist down.
The story of their strength and unshakeable faith quickly outgrew the piney backwoods and lightly traveled two-lanes of small-town Georgia.
By 2010, documentary filmmaker Rick Cohen was chronicling what would be Williams’ last season of coaching in a film called “Season of a Lifetime.” The network program “Extreme Home Makeover” had swooped in and refitted their Pine Mountain Valley home to accommodate the needs of Jeremy and Jacob. The National High School Coaches Association named Jeremy coach of the year.
Then time passed. The ALS progressed without remorse. Initially, the world had seen him as a man dealing with the prospects of a dread, fatal disease. From there, like a slowly rising tide, the reality of ALS crept over him and his family. The harsh realities compounded.
Jeremy’s body shut down in stages. ALS progressively attacks the nerve cells in the brain and spinal cord that control muscular movement. Against his doctor’s urgings, Williams postponed serious medical procedures so he could finish coaching the 2010 season. By the end, he had to retreat to the press box during games to escape the cold that ripsawed through his bony frame.
Out of the public gaze, the family began paying the disease its increasingly burdensome dues, doing the difficult things with nobody watching.
“My fear after ‘Home Makeover’ and the initial stream of articles was that people would forget him,” said family friend Keith Myers.
Never fear. The unforgettable part of Jeremy Williams’ story resides in the days of quiet resolve.
“I look at the blessing that he’s still here with us,” his wife said. “We don’t live our life as if he’s dying. He’s not. He’s living. He’s still here with us. We really focus on the blessings. What happens in our life is that every little moment is that much more special.”
That was Jeremy writing on the enduring lessons of the game that defined so much of his life before ALS changed the script.
Taking inventory of the parts that still work: Jeremy has minimal use of his right leg, enough that he can bang it against his chair for attention or occasionally boot the chair of his son when he needs to focus on a task. The muscles of his face still work well enough to form a brilliant smile, which he unsheathes with surprising frequency. With his thumb, he can steer his motorized wheelchair until late in the day when fatigue robs him of even that small bit of control.
His mind is the last completely sound part of him. There resides the garden from which grows the will to wake up every morning and face whatever the latest insult the disease has in store.
Just like the high school defensive back who left Columbus and earned his way onto the field at Memphis by the ferocity of his play, like the coach who would accept no excuses from his players, Jeremy has navigated the stages of his disease as if they were the quarters of a close game.
That meant that every concession to ALS would have to be wrung from him. He would stubbornly hold out against each incremental loss of independence.
The physical frustrations that Jeremy describes are formidable:
He would not allow the loss of control to spread to his attitude.
From cane to wheelchair to powered wheelchair, to, one day soon, a chair he will control with head movements — each step he has fought to the absolute last possible moment. Jeremy has a computer system that would allow him to type out messages by eye movement, but he refuses to even practice with it so long as his thumb still can get the job done.
That has been his approach for the last eight years, since the first symptom appeared. Shrugging it off as the aftereffects of his playing days, Jeremy noticed some weakening and atrophy in his left hand. The problem spread so slowly that it set off no immediate alarms.
In fact, it wasn’t until late 2007 that a doctor in Macon made the first definitive diagnosis of ALS and referred Jeremy to specialists at Emory.
Given that Jeremy evokes the hardened stoicism of an Old West sheriff, it can be difficult to read the subtle shades of his emotions.
Leaving the doctor’s office in Macon, “I’m bawling in the parking lot,” Jennifer said. “He holds me while I cry and he goes, ‘Honey, I still need to go shopping for shoes.’
“So we left there and went to Bass Pro Shop and picked out a pair of shoes like it was another normal kind of day.”
During preseason practice in Greenville, Jeremy called the team together and informed it of the diagnosis. He sugar-coated none of it, passing the same message to his players as he had to his family.
“He told us we had one day to cry, and then we go on with our lives,” said Kenarious Gates, the former Greenville lineman now at UGA.
“You’re human, you get depressed. Jeremy keeps a lot of his feelings inside of him, especially the ones that aren’t good,” said John Bolles, Jennifer’s father. “He looks to the Lord for the strength to get through it, and at every phase the Lord has brought him through it.”
That held true through the most wrenching decision of them all.
Come February 2011, there was no more delaying it. Williams and his family had arrived at that critical crossroads facing every ALS patient. Get a tracheotomy through which the ventilator tube can pass and live on in ever-increasing dependency, or accept the inevitable and choose death, probably by respiratory failure. Only about 10 percent of the people Jeremy’s doctor Jonathan Glass treats opt to continue on with the ventilator.
“I definitely was pushing him (to the ventilator),” Jennifer said. “I want him around as long as I can have him around. We’re not the couple who has the big, big discussions. We kind of just go, ‘What do you think?’ We just pray about it. And if we feel God’s confirmation, we are obedient.”
They agreed on the path less taken.
Once on the ventilator, it was imperative that someone always be with Jeremy because a machine keeps him alive, and machines can fail.
He has the advantage of a large family who lives nearby, one willing to do whatever it takes to care for Jeremy. His parents, his in-laws and his sister attended classes at Emory to qualify as care-givers who could suction his lungs when they filled with mucous and maintain the breathing and feeding tubes. They marshal their forces with military precision, working on a set schedule to stay with Jeremy while Jennifer, a technology specialist for Meriwether County school system, is at work.
The job of Jeremy is all-consuming, requiring a love to match. “It’s the bathing, the toileting, the feeding, it’s everything necessary that you and I do and don’t even think about it,” said Glass. When Jeremy has an itch, someone else must scratch it. With a wench system and a track that leads from the bedroom to the bathroom, Jennifer is able to raise and lower her husband as needed.
This family struck a hard, firm bargain. It would do whatever was necessary to keep Jeremy alive. “It is an honor to take care of my brother,” said Kimberly Williams.
And Jeremy, in turn, would not be satisfied with mere existence. He lives life as fully as possible as a tribute to determination and trust in God.
For when you have chosen to live on as an example of faith in the face of Old Testament-style affliction, every day is a message and not a single one can be squandered.
As the disease progresses, it challenges Jeremy and all those in orbit around him. It is not his style to shrink away and live out his days in his room with the shades drawn. Last fall, several times on a whim, he asked to go to a nearby high school football game. Jennifer loaded the family into the van and off they went. They still make church every Sunday and have begun hosting weekly Bible study classes at their home. Every Tuesday, his father-in-law and a friend take Jeremy out for a barbecue lunch. So long as he can still swallow a little Brunswick stew and a few bites of cream pie — no meat anymore — Jeremy will continue the tradition.
Living the fullest possible life has come to mean being cared for without being pitied. Out of respect to Jeremy, his family has had to learn the delicate balance between helping and hovering.
“Jeremy would never want to be fussed over,” Jennifer said. “He wants his needs met but beyond that, he’s a man. He’s not a baby. He’s not a child. So we try to meet his needs.
“He’s still the daddy; he’s still my husband; he’s still the one in charge of this house.”
Living the fullest possible life means helping your boy with his homework as long as you can. A recent scene could have been played out in a million homes. As Jacob read aloud about the port city of Savannah, he stumbled over a word. His father stepped in to help. Only Jeremy had to type out the word, and a phone app gave it a flat, mechanical reading: “Major.”
Those are the moments that confirm the decisions of Jeremy and his family to keep the lamp of life lit.
“He takes care of me,” said Jacob. “I take care of him sometimes when he gets in trouble.”
When Jeremy so reluctantly left coaching and came home for good, he returned to a place where long-ago love notes he wrote to Jennifer are fanned out on stands above the couple’s bed.
They were married 19 years ago, when Jennifer left home to join Jeremy for his senior year in college. They had begun dating when she was at Shaw High in Columbus and Jeremy was at nearby Kendrick. When they began seeing each other, Jennifer’s mother sought out one of Jeremy’s former coaches for a scouting report. “He told me, ‘If I had a daughter I’d be honored if Jeremy Williams would date her,’” said Jennifer’s mother, Kathy Bolles.
A common theme of those yellowing notes above the headboard is the unbreakable nature of the marriage vow, that, “If we marry each other it’s for always,” Jennifer said. This Christmas she shopped for her husband and bought for herself in his name a decorative letter “A” to go on her key chain. “A” as in always.
Among the other Christmas gifts was a ceramic figurine of a mother wrapping her daughter in an embrace. Jennifer gave that to her girl Josie, along with a note about how much she loved and appreciated her. It would be too easy, when your father has ALS and your little brother has spina bifida, to grow up before almost anyone notices how much you put your own needs on hold.
Their victory is in how they all have rallied and rewritten the turmoil of their lives into a revised version of normalcy.
Keith Myers has known Jeremy and Jennifer since they were teenagers in Sunday school class. Joking how Jeremy was only in that class to be close to the girl he’d one day wed, Myers now marvels at how both of them have bonded into such a resilient human alloy.
“This family has never gotten down — there may have been times, but I haven’t witnessed it,” he said. “It’s their faith, their strong belief that God is going to take care of them no matter what. I call myself a Christian, but I don’t know if my faith is strong like that.”
Chip Medders, who coached with Jeremy and is now principal at Manchester County High, sees a mightier man in a weaker body when he looks at his former colleague. “Mentally and emotionally, he’s stronger now than the person I knew as a coach. And Jennifer has taken on the same personality,” he said.
Jennifer simply binds the family’s struggles and strengths in a single sentence: “This is God’s story for the Williamses.”
Question to Jeremy: What do you want people to take from that story?
Every step the Williams family has taken has been in the company of faith. Each counterpunch they throw at ALS is delivered in the name of God and Christ.
They have become committed to framing their story as an allegory from which all can draw. There is a religious/inspirational book — tentative title, “Tenacious” — on track to be released later this year.
To a growing list of followers, now numbering around 200, Jeremy texts inspirational messages a couple times a week.
He continues to preach the gospel of football, too. “He’s still coaching me, no matter where I’m at,” said UGA’s Gates. “After every game, he’ll send me a message. Some of it will be encouragement: Great game. Some of it is to help me get better: Work on your footwork; you’re lagging behind the play; drive with your feet.”
Their story has a way of drawing people to it. Jennifer has stopped keeping a running total of the endless medical expenses. She has come to the peace that what is not covered by insurance will somehow be met.
There is no exact timetable for how long Jeremy might live.
“It’s hard to because it’s a very variable disease,” said his doctor, Jonathan Glass.
“For him now technically he’s not going to die of this disease,” the doctor said. “He may become unable to tolerate the course of the disease. He doesn’t move much now. I can tell you that will go away, too. The only thing that probably is not going to go away is eye movement.
“Anybody who lives in a wheelchair like that for any period of time, they can get kidney failure, get pneumonia, all kinds of things from not moving too much.”
During appearances at churches, whether it was when he could speak or when he could only type out his messages, Jeremy told people up front he knew he was dying. But, he always cautioned them, he might outlive them.
“I do feel in my heart that a lot of people might look at Jeremy and think that his time is limited. I don’t feel that,” Jennifer said. “I feel that he will be here as long as it takes to fulfill God’s promise. I have a lot of comfort in that.”
When it comes to mortality, faith, trial and pain, the man who cannot speak can streamline his views to a spear tip.
Just two words, nine letters, that Jeremy types often into his phone when someone asks how he deals with it all.
Steve Hummer, one of the AJC’s most experienced sports reporters, does what a good reporter should do: He writes a story and makes a note to himself to come back to it. Hummer first met Jeremy Williams in 2009, when he heard about a brave high school football coach staying true to his players while fighting a serious disease. Hummer followed Williams’ last season at Greenville High. He went back to him late last year to find out how Lou Gehrig’s Disease had changed his life. It’s an inspiring story, told with compassion and insight. You’ll see from our photos inside that the illness has ravaged Williams’ body. But it has not broken his spirit. Tell us your personal journey at email@example.com.
For 23 years, Steve Hummer has covered sports for The Atlanta Journal-Constitution. He has another 10 years of experience writing sports for newspapers in Florida. He has covered events from the Olympic Games (five summer, four winter) to the Masters (25) and currently focuses much of his work on personality profiles. Born in Clearwater, Fla., schooled at the University of Florida, he lives in Kennesaw with his wife, Rae. Their son, Grant, serves in the U.S. Army. Read more: Steve Hummer's story about Jeremy Williams from 2009: Players, coach feed Greenville’s dreams
Curtis Compton has been a staff photographer at The Atlanta Journal-Constitution since 1993. He has worked for United Press International and the Gwinnett Daily News. In 1984, he won a World Hunger Award for covering the famine in Sudan. “The most rewarding work we do is having a positive impact on people’s lives,” says Compton. View a Gallery of photos from this story