Jim Rhodes was taking a shower.
It was a Saturday in June 2014. The 49-year-old was at home, unwinding from a long week at work maintaining the physical facilities of Miami University’s Bell Tower Place.
He was just washing up. It was just a normal shower.
Until he looked down.
Jim’s calves were so large that his older sister, Sue, called them “steaks.” He woke up early each day to exercise, wanting to maintain that athletic physique and pump his body with endorphins so he’d begin his work day on a positive note.
Looking down on that Saturday morning, Jim saw that his right calf was there, in all of its beefy glory.
But his left was not.
It seemed like it happened overnight. His left calf muscle was half its normal size. Jim rushed through his shower, climbed out and tried to flex his left calf. But it didn’t move.
The doctor’s offices wouldn’t open until Monday.
“I couldn’t wait to call my doctor,” he says now, “but I had to wait.”
After consulting the doctors, amyotrophic lateral sclerosis (ALS) was ruled out. The doctors found that Jim’s spine was pinched and performed a posterior anterior spinal fusion. The surgery inserted cadaver bone, Jim’s own bone and surgical steel into his spine, freeing the pinched nerves.
The insert boosted Jim’s height from 6’1” to 6’1½”.
“If I knew they were going to put a lift kick in me, I would’ve asked for the four-incher,” he laughs.
But six months later, his height was the only thing that had improved.
So Jim’s doctors decided to run another test, this time to search his blood for a small enzyme, creatine kinase. Referred to as CK, this enzyme is produced by the liver to repair tissue damage in the heart, muscle or brain. The normal CK count for the average person sits around 80-100 total units.
Jim’s was almost 10,000.
His liver was working overtime to repair something that was seriously wrong.
After meeting with several neurologists and finding no answers, Jim was told to seek a specialist at The Cleveland Clinic. He began doing his research, sizing up doctors and recommendations before making an appointment.
After extensive blood testing, brain imaging and full-body electromyographies to assess his muscles, Jim was diagnosed.
He wasn’t worried about being sick when he went in — he thought that had been ruled out in Cincinnati before his back surgery; all of those tests had been run. His biggest worry was seeing all of the esteemed, fancy credentials on his doctors’ name tags.
“I kept thinking they were going to speak to me in languages way, way over my head,” he said.
Jim’s doctor sat him down and diagnosed him with ALS.
ALS is commonly referred to as Lou Gehrig’s disease, named for the Yankees player who delivered a famous farewell speech about his own struggle with the disease. The progressive neurodegenerative disease attacks motor neurons in the brain and spine that spread to every muscle in the body. When these motor neurons die, the body can no longer initiate or control its muscle movements.
There are generally two timelines given to people diagnosed with ALS: a three-to-five year progression or a five-to-eight year progression.
In the early stages, sometimes even before diagnosis, patients have stiffness in their muscles or spasms. They can also experience fatigue or lose muscle mass, as Jim did in his calf.
As more motor neurons are attacked, moving becomes difficult. Voluntary movements — such as holding things, walking and swallowing — are the first to become affected.
Paralysis is guaranteed with ALS. It happens gradually, starting with the small muscles and eventually progressing to full-body paralysis. In the final stages of the disease, patients require around-the-clock attention, and are often fed through a tube due to throat paralysis.
Towards the end, ALS victims can no longer communicate.
The prognosis is death, with 90 percent of victims dying within five years of being diagnosed. There is no cure to pause, end or reverse symptoms. There are only a few drugs and therapies that may slow the disease’s progression.
After breaking the news to Jim, the doctor launched into explaining all of these progressions, and explaining what Jim’s tests and images looked like. Jim was there, he was listening, but it was all a blur, really. Now, he specifically remembers one piece of information the doctor told him that day: that his disease was not hereditary, meaning that it wouldn’t physically affect his family.
That was a relief to Jim, a single dad whose daughters Courtney, 21, and Taylor, 23, were his first thought.
How would he explain this to them? How do you tell your daughters you’re dying?
Until that appointment, all of Jim’s thoughts were about the possibility of being sick, the maybes and the maybe-nots. Now the conversation was concrete. Jim was really sick.
“There’s just no way to dodge a subject like that,” he says.
After the appointment, he had a four-hour ride home to think about it. Now, he recalls it as the fastest car ride of his life. Jim just kept running through it all in his head, what would happen, what he could say. Soon enough, he was pulling into his driveway; his daughters were already home. They asked him how everything went, how his visit was.
And Jim broke down.
“I’m going to do everything within my power [to fight this],” he told Courtney and Taylor.
They cried. They hugged. They were clingy for a while.
That November 2014 day was the beginning of a string of emotional ones for the Rhodes family. After his daughters, Jim had to tell his parents. As one of four kids, he kept thinking about how heart-wrenching it would be to lose one of his own daughters during his lifetime.
While his family came to terms with what was about to happen, Jim did too.
“All the tears got cried out,” he explains. “I couldn’t cry anymore.”
Jim was faced with a lot of questions that were hard to ask and harder to answer. A football player at Hillsdale College, he had remained devoted to staying in shape and maintaining his ox-like strength. This made it hard for doctors to predict how long he had left, or how his disease would progress.
Immediately following his diagnosis, Jim started taking Rilutek, a drug that can help slow symptom progression of ALS by protecting nerves in the brain and spinal cord from glutamate, a substance that contributes to the nerve damage. He also began taking anti-depressants, but no narcotic pain medicine.
That was three years ago.
Today, Jim is the Armstrong Building Service Coordinator. He comes in every morning by 7:30 and checks all of Armstrong’s systems through his computer program. Then he looks for alarms to know what isn’t operating properly or what’s low. He keeps up to date on the freezer temperatures. He walks through all of the mechanical rooms to search for leaks and breaks.
He talks to all of the Building Service Associates, who maintain the dish machines and make sure each level of Armstrong is stocked full of everything it might need. He does almost everything he used to, except climbing up on the roof. It’s not really his job to do all of the little things, but he says the first shift is hard, so he makes sure he gets done with his checks with enough time to jump in and help out.
Jim used to log about 25,000 steps in a day’s work, but with the opening of the Armstrong East Wing, that number has increased to about 40,000.
He is in pain, every day, almost all of the time. In the morning, particularly, he has joint pain due to his abnormal gait. A “giddy-up in my hitch,” he calls it.
The telltale limp is improved by special shoes and a carbon fiber plate that runs under his foot and around his ankles.
“Without them, I’d walk like a duck,” he says.
Jim was so determined to not allow his diagnosis to impact his life that he kept it a secret when he returned to work. But when his abnormal gait “reared its ugly head,” he was outed. People started asking about his knee or hip problems, and he decided it was time to fill everyone in.
At the start of the 2015-16 school year, a year and a half after his official diagnosis, Jim sat all of his coworkers down together and told them about the illness he had been hiding. He made a point of asking for no special treatment.
Sue posted her brother’s diagnosis on Facebook. It was the first time Jim had gone public with his diagnosis. His Facebook notifications multiplied; his extended family and friends were finding out for the first time.
Some of these people, and some strangers, took their response a step further, sending Jim letters, cards and notes.
“It’s uplifting; they always come with a positive message,” he says. “I still told people, ‘I don’t want sympathy. I just want to live as normal a life as possible, while I can.’”
Of the dozen or so ALS patients who were diagnosed at the Cleveland Clinic in 2014, Jim is the only one that still holds a job.
In fact, he’s the only one that can walk into his appointments under his own power.
When Jim tells people this, he pauses, he takes a deep breath, and sighs, “Yeah.”
He sits back in his chair and exhales. “Well, I’d be a liar if I said it wasn’t hard.”
In an effort to help find a cure, or at least to find treatments that slow or halt progression, Jim has opened himself up to help doctors with their research. By looking at his genes, researchers think they have found the biomarker for ALS, and hope to be able to reconfigure and re-insert the gene to help slow its growth.
Experimental treatments like that are too expensive for most people fighting the illness.
Jim signed up for a national ALS registry so that other researchers can contact him, because, he says, “There’s nothing left to lose.”
From the time of his diagnosis, Jim was never content to sit back and let death be the end of the conversation. That’s his explanation for the almost unheard-of slow progression of his ALS, for his refusal to give up or seclude himself.
“I chose my faith, my family and my work over myself,” he says.
Today, at 53, Jim still has not filed for disability benefits. He thinks that if he keeps working, keeps improving other aspects of his health, then the ALS will stop.
Jim doesn’t look sick. His muscles bulge under his cardinal-red polo shirt. His nails always have a hard day of work’s worth of dirt under them. His hands have grown calloused and capable. His thick build and confident attitude do nothing to clue anyone in on his secret.
If you saw him at the gym, you wouldn’t know, either. Jim listens to music on his iPod during his morning workouts at the YMCA. He used to run, but as his legs stiffen, he has started working out on a stationary bike. Stretching his muscles and lifting weights with his arms, Jim makes sure that his body is healthy as possible.
Other than that hitch in his step and a breathing machine he’s recently started using at night to improve his pulmonary function, Jim hasn’t experienced any physical decline.
“Hopefully [I’ll] prove them wrong, hopefully show them that I don’t have [ALS],” he explains. “So I haven’t stopped since then.”
He also hasn’t stopped turning to his faith in light of his diagnosis. Before, Jim didn’t ever think he needed other people’s prayers; he had it handled all on his own.
But after being diagnosed, Jim found that people of his faith just had a better idea of what to say. And what to not say.
One of these people is Cindy Amerine, who was diagnosed with ALS in 2014. Jim met Cindy through his sister, Sue. Though Cindy lives in Naples, Florida, the two used to talk about their journeys, before Cindy’s disease prohibited her from speaking.
Cindy gave Jim a small silver coin — the kind that you see in baskets by the register in stores, with a raised angel on one side of it.
“Protect me” curls across the other side in cursive handwriting.
When Cindy could still talk, she wrote a song for ALS patients everywhere. It’s sung by her friends, Mary Jo and Moose. The “ALS Odyssey Anthem” sums everything up for Jim perfectly.
He opens his browser, quickly navigating to the song, and presses play. The lyrics began to fall softly across the screen.
“I thank God she had the talent to write that,” he says, tears quietly gathering at the bottom of his eyes.
Jim’s blurry eyes follow the words as he threads the coin through his fingers, rubbing his thumb over its engraving, flipping it over and over.