There’s no way to know if Mike Livings, who now looks 30 years older than his age, has accepted the cruel twist of fate that has robbed him of so many of his life’s joys – or if he’s still determined to fight a diabolical disease to what could be a very bitter end.
Because he’s not saying.
Not to me. Not to family members or friends. Not even to his high school sweetheart and wife of 34 years, Cindy, despite her repeated attempts.
“I’ve tried to have serious conversations with him, but he doesn’t say much,” she said. “I don’t think he’s ready to die, but when I ask him about it, most of the time I just get a vacant look.
“Does he want to go in peace or continue fighting it? I don’t know,” she added. “He doesn’t seem to want to talk about it.”
It’s entirely possible Livings doesn’t know what to say – because there’s no way to know if, somewhere in the world, some doctor is on the verge of discovering a new medicine that will change everything.
It’s also possible the 57-year-old father of three knows exactly what to say but can’t bring himself to utter the words.
“It’s a bad disease,” said Livings, a former assistant principal at Gifford Middle School and 14-year assistant football coach at Vero Beach High, where his father, Billy, led the Fighting Indians to their only state championship in 1981.
“It’s no fun at all,” he added. “It’s been real hard, especially the last year or so. It’s not getting any better.”
And, barring a medical miracle, it won’t.
There is no cure for Erdheim-Chester Disease – an affliction so rare and so often misdiagnosed that, since the first case was discovered in 1930, only about 500 cases have been reported worldwide. Nor is there a consensus as to what causes it.
Though EDC remains difficult to diagnose because it attacks different organs in different people, there has been an increased interest in researching the disease since 2009, when the National Institutes of Health and Mayo Clinic joined the ECD Global Alliance in the fight.
Currently, roughly 200 people in the U.S. have been diagnosed with EDC, which involves the excessive production of a certain type of white blood cells but is not categorized as a cancer, immune disorder or infection and isn’t believed to be contagious or hereditary.
When Livings was diagnosed in 2009, he became only the 309th confirmed case of ECD.
“When a doctor first mentioned Erdheim-Chester, I went to the internet and Googled it,” said Livings’ wife, a longtime registered nurse who teaches health science at Vero Beach High. “I found one paragraph. That’s how little was known about it.”
Little could anyone have imagined the physical devastation that awaited Livings, a wonderfully gifted athlete who played football at Southern Mississippi on a scholarship and excelled at every sport he tried.
It was in February 2007 that Livings – then a fit and active 48-year-old school administrator who enjoyed running, golf and tennis – began to feel lethargic, as if the energy had been drained from his body.
“I thought it was something that would just pass,” Livings said.
It didn’t.
So Livings went to a doctor, whose initial examination turned up nothing. But after he passed out at a Toby Keith concert in West Palm Beach and was rushed to a hospital with what his wife and family members thought was a heart attack, he underwent further tests in May.
Those tests revealed that Livings’ urethra was too narrow, a problem doctors believed could easily be corrected by inserting stents.
That summer, Livings still wasn’t feeling well, so he went to Shands hospital at the University of Florida in Gainesville. But it wasn’t until specialists there performed exploratory surgery that they discovered his kidneys were failing.
“The doctors told us they had never seen anything like it,” said Livings’ mother, Rosie. “They had never seen kidneys so obliterated, but they didn’t know what caused it. All they knew is that the kidneys had to come out.”
Livings’ kidneys were removed in June 2008 at the UAB Medical Center in Birmingham, Ala., where he had hoped to undergo a transplant. His sister, Libby, was supposed to be the donor, but problems arose in the matching process only days before the operation.
Four months later, after experiencing some medical difficulties during dialysis, the transplant was performed with his niece – Libby’s daughter, Mary Katherine – as the donor.
Everyone believed the problem was solved.
“I wasn’t worried,” his wife said. “Other than having his appendix removed in the late ’80s, there was nothing in his history to indicate any other medical condition. So when the kidney problem came up, I figured it was just something we needed to fix. And we did.”
Their relief didn’t last long: While Livings seemed to be doing well in the weeks leading to Christmas, his condition suddenly changed over the New Year’s weekend.
“He was fine at Christmas,” his wife said. “A week later, he couldn’t move, and he got worse every day.”
As Livings and his family would eventually learn, a disease they didn’t know existed – the disease that destroyed his kidneys – had spread to his spinal column and behind his eye.
After conducting a scan of Living’s spine on a Sunday, doctors said he needed to get to the UAB Medical Center the next morning for an emergency procedure. But it was a holiday weekend and no flights were available.
Fortunately, a close family friend, who wants to remain anonymous, arranged to have Livings flown from Vero Beach to Birmingham on a private jet Monday morning.
“There’s no way we can ever repay him,” Livings’ mother said.
It was while Livings was at the UAB hospital that the doctors discovered the sticky, yellow, gooey substance associated with ECD.
Consulting with ECD specialists in Italy and France through the global alliance, doctors at UAB began treating Livings with different medications, including at least one that was experimental.
“The treatment is kind of a crapshoot,” Livings’ wife said. “Some are cancer meds. Some are anti-inflammmatories. Some are anti-rejection drugs. We just don’t know enough about the disease to know exactly what works.”
Doctors finally settled on a treatment that effectively slowed the growth of the ECD cells and noticeably reduced the sometimes-agonizing pain in Livings’ back. And until a year ago, he seemed to be feeling better.
Then, starting last March, Livings was hit by a flurry of urinary tract infections – nine of them through the end of 2015. Each infection required stays of at least one and up to two weeks in the hospital. Each stay costs him 5 to 6 percent of his muscle mass per day.
He also has undergone four major abdominal surgeries.
It was no surprise, then, that his condition has worsened with each bout with infection, leaving him so weak he is no longer able to walk, even with a walker, and now spends most of his waking hours sitting in a recliner and watching sports on TV in his living room.
Not only has he dropped 40 pounds from his pre-illness athletic frame, but he also has lost almost all muscle tone and has aged at a frightened rate.
“To see him now, knowing what a great athlete he was, it’s humbling and heartbreaking,” said local chiropractor Matt Parris, who played football at Vero Beach High from 1987-89 when Livings was an assistant coach.
“As a coach, as a teacher, as an administrator and as an athlete, he had a passion for everything he did,” he added. “And for something like this to happen … There’s just no way to comprehend it.”
John’s Island resident Mark Morein has known Livings for 16 years – since their daughters went to middle school together – and their families are so close they might as well be relatives. He said he visited his friend three weeks ago and Livings was, for the most part, alert and able to converse.
“But I was told I caught him on a good day,” Morein said, adding, “This is just so sad for Mike and the family. Cindy has done a good job of handling everything, but there’s only so much you can do.
“You can’t say you just have to find the right doctor or find the right medication and everything will be fine. With something like this, you’re always playing defense.”
Livings has nursing assistants who care for him while his wife is at work, but his condition deteriorated so much in recent months that she considered placing him in hospice care.
To do so, however, she would’ve been required to discontinue giving him the anti-rejection medication for his transplanted kidney. She refused.
“Without that medication, his kidney would fail, and that would be causing his death,” Livings’ wife said. “It’s one thing to allow someone to die. It’s another thing to make it happen. To me, that’s wrong. I couldn’t do it.
“Besides,” she added, “it would also be disrespectful to his niece who donated her kidney.”
Certainly, having a nurse for a wife has helped Livings cope with his now-limited physical abilities. But being a nurse has also helped his wife deal with a very difficult hand.
When her husband is experiencing a particularly tough time, she’s able to temporarily detach, put on her nurse’s hat and treat him as a patient.
“The stars lined up, didn’t they?” Livings’ wife said of her career choice. “It definitely helps that I’m a nurse.”
She’s also a wife and mother whose youngest daughter, Laurie, is getting married on April 30 in Savannah, Ga. And she plans to be there – with her husband.
Indeed, Livings said he, too, is looking forward to the wedding, though he conceded, “I can’t really take part in it.”
Actually, his wife said she plans to push him in his wheelchair as he “walks” the bride down the aisle.
“The big reason Laurie decided to do it this year is because she wanted to make sure her daddy could be there,” Livings’ wife said. “So even though we don’t really plan ahead anymore, we’re planning for this.
“I have a house rented in Savannah and I’ve already bought a dress,” she added. “If something happens and we can’t make it, our family and friends will understand.”
Attending the wedding would be a rare social outing for the Livings these days. It’s simply too difficult for Livings to travel and be away from home.
Which is too bad: People like him and miss him.
“Back when he was still able to get around, I used to take him to lunch, and wherever we went, people would come up and thank him,” said Boo Graves, who met Livings on the tennis court and built a friendship that has lasted 20 years.
“Some would have tears in their eyes, because of what Mike did for their kids,” he added. “He hasn’t been around much because of this disease, but he’s connected to this community way more than people think.
“A lot of people don’t realize how much he has done for kids and the impact he has had here, but the people who knew him haven’t forgotten him.”
Livings no longer resembles – physically anyway – the man they knew a decade ago. Even his wife admits, “There’s almost nothing about him that was who he was before.”
Yet she refuses to ask, “Why me?”
“What I’ve learned is that everybody, at some point in life, has to deal with something,” Livings’ wife said. “Mike and I were extremely blessed the first 50 years of our lives. Life was so smooth. I guess we were due.
“This was a lot more than most people get hit with,” she added. “Our bags weren’t packed for a journey this long. But all you can do is keep waking up and putting one foot in front of the other.”
Somehow, through it all, as worn and weary as she often feels, she hasn’t yet lost hope.
Although she said her husband is now too weak to return to the UAB hospital, Livings’ wife has found and contacted an Orlando cancer specialist who has treated several ECD patients.
“Is there really a chance? Probably not, but I’m an optimist by nature,” she said. “It’s worth having Mike’s case looked at by a fresh set of eyes.”
In the meantime, Livings will continue his once-a-week sessions with the Rev. Bob Baggott, the Community Church of Vero Beach’s senior minister, who he said comes to his home and “talks to me about life and death.”
Unlike some cancers, or even Lou Gehrig’s disease, there’s no way to know how long a person will survive after being diagnosed with ECD. In many cases, ECD patients succumb to infections or complications connected to the treatment for the disease.
“Mike’s heart and lungs are strong, and his kidney and liver are functioning,” Livings wife said. “I know anything is possible, but I don’t think he’s going anywhere yet. I just don’t want it to be a slow, horrible decline.”
Livings probably agrees.
But he’s not saying.