Mick and Elizabeth Lyon share a diagnosis and a love story.
Nov. 28, 2011
As the couple walked through the downtown square in Bloomington, Mick Lyon put his arm around his wife’s small frame.
It was a nice change, Elizabeth thought.
The IU women’s soccer coach was not a very publicly demonstrative man. The couple rarely held hands or showed any affection in public.
Looking back, it should have been a red flag.
It wasn’t the only change in his behavior, but each one was hard to notice and easy to excuse.
Mick had started slurring some words, but Elizabeth thought he might have just been tired or had a couple beers.
He didn’t drink much, but he did have an exhausting job as a Big Ten soccer coach.
Elizabeth should’ve recognized the symptoms — she knew them firsthand.
She had been diagnosed with multiple sclerosis two years before. He, too, would be diagnosed in a couple of months. His arm around her was for support as his left side grew weaker.
Their love had taken a turn after her diagnosis. They wouldn’t have time to brace themselves for the next turn either.
But that day, Elizabeth didn’t recognize the symptoms she knew well.
She only thought of how comforting it was to have her husband’s arm around her.
Before Mick started slurring his speech or supporting himself on other people, before he and Elizabeth helped each other inject medicine to control the flare-ups and symptoms of their disease, before they made the vow to stay together in sickness and in health, Mick stood shirtless in the door to Elizabeth’s office. A red rose dangled from his teeth.
“I was dead meat,” Elizabeth says, looking back on their first meeting. “It was sort of love at first sight, or for me it was anyway.”
She was the associate director of admissions at the University of Evansville. He was about to start his junior year of college as a three-time All-American soccer player.
She was from Nashville, Ind. and spoke with a hint of a Hoosier twang. He was from Lancashire, England and spoke with a British accent.
“Actually it was love before first sight,” Elizabeth recalls. “When we talked on the phone and I heard his British accent I thought to myself, ‘Boy, I hope he is nice and good-looking because I want to marry that voice.’”
Elizabeth knew she would go on to marry that man who first stood shirtless in her doorway.
She had first called Mick ten days before to ask him on a blind date to a Huey Lewis and the News concert. Mick was a poor student from England so he thought he might as well take the offer of a free concert.
“We met and I was immediately smitten. It was just instant fireworks,” Mick says. “We just got on straightaway from there and stayed on ever since.”
That was May 18, 1987. Two years later, Mick graduated, accepted a coaching job, and married Elizabeth within a month.
They were married in a small informal wedding, officiated by Elizabeth’s childhood pastor from Nashville and with the some of the traditions from the Church of England in which Mick grew up. The couple invited friends over to their house for a party, which was actually their wedding reception.
“For a few years, we forgot our anniversary,” Mick says. “We celebrated the 25th and it’s the 21st.”
“We didn’t know what it was so one day we got our marriage license out and realized it was the 24th,” Elizabeth says.
“Oh, is it the 24th?”
“Oh that’s right,” Mick says, laughing at his mistake. “We remember when we get there. I normally get plenty of hints that it is in June.”
After the wedding, Mick took a job coaching in Kentucky before returning to the University of Evansville in 1993 to start their women’s soccer program. Nearly ten years later in 2002, the Indiana University position opened.
Elizabeth stayed on in Evansville while Mick moved to Bloomington. They were both wedded to their jobs and to each other.
“It was going to take something pretty powerful to pull me away,” Elizabeth says.
Elizabeth first knew something was wrong when she kept tripping over things and losing races. A marathon runner, she normally placed in the top three of her age class. Then her times started slowing down and she slid into the middle of the pack.
“Who doesn’t stub their toe? Who doesn’t have pins and needles? Who doesn’t have an off day and lose their balance?” she says. “But you don’t think you have a chronic debilitating disease.”
Mick had noticed the changes in her running times, but he didn’t think anything of it.
He didn’t realize it could be that bad until he went with her to a doctor’s appointment and watched a piece of paper shake from the tremors in Elizabeth’s hands.
Two weeks after Mick moved to Bloomington, Elizabeth was diagnosed with multiple sclerosis.
She had an idea what could be going on once the sports trainer sent her to the neurologist. She had studied pharmacology, so she pulled out her old textbooks to figure out what was wrong.
“What a sock in the gut that was,” Elizabeth says. “And what do we do now? And how do we do it? And what does that even mean?”
Multiple sclerosis is a brain disease where the body’s autoimmune system starts attacking the brain, causing multiple lesions and scars, or sclerosis, says Dr. David Mattson, director of the multiple sclerosis program at the IU School of Medicine’s Department of Neurology.
When it attacks, the nerve impulses to the brain are altered or destroyed causing a variety of symptoms, ranging from muscle weakness to vision loss. It depends on which part of the brain is being attacked.
MS isn’t a death sentence or a fatal disease, but it can diminish the overall quality of life.
About half of MS sufferers will have to use a cane about 10-15 years after diagnosis. A smaller percentage will end up in a wheelchair, Mattson says. However, many symptoms like blind spots, tremors, and walking problems are irreversible.
Mick says the couple immediately looked at the worst possible outcomes — paralysis, wheelchairs, blindness. But he knew he’d do whatever he needed to for her.
“For me, I just felt ‘well that it means I’ll need to take care of you … whatever it is, I’ll be there to push you in a wheelchair,’” Mick says.
The diagnosis pushed them to make the move faster and Elizabeth joined him in Bloomington 18 months later.
“Then I thought I’d trump her,” Mick says, jokingly. “I’ve always been competitive.”
Whereas Elizabeth noticed a slowdown on her running times, Mick just woke up one morning unable to run.
He’d been recruiting in Nottingham, England and staying at his brother’s house when he woke up and realized his left leg wasn’t working properly. The day before, he had gone on a four mile run through the hills of Nottingham. The next morning, he only had numbness and a tingling sensation.
“I couldn’t pick my foot up properly,” Mick says. “I could walk, but I couldn’t run and I didn’t know what was wrong.”
Mick tried to hide the symptoms for two months before finally speaking to a doctor who sent him immediately to get an MRI scan. He was diagnosed that night with multiple sclerosis.
“Nobody can believe that a husband and wife who have been together for so long were then diagnosed. Nobody knows of any other husband and wife like us,” Mick says. “There are other husbands and wives who met through programs or support groups. But nobody knows of any others who have been together for so long and were both diagnosed.”
MS isn’t a contagious or genetic disease, as many people think when they meet Mick and Elizabeth. MS is more common in women and Caucasians with northern European ancestry, according to the National Multiple Sclerosis Society.
Those with family members with MS are more likely to develop it, but neither Mick nor Elizabeth knew anyone who had been diagnosed.
“We had two extremely different families,” Elizabeth says. “Different countries. Different continents. What are those odds?”
For Elizabeth to have been diagnosed, the odds would have been one in one thousand, says Mattson. For Mick to be too, the odds are one in one million.
Mick sat on the bench and watched his players sprint up and down the field. If he stood, he might have wobbled. His left side is now weaker than his right.
He supports himself putting his hand on his players’ shoulders or around his wife. Both actions would appear normal, but it’s getting harder to mask the disease’s effect on their lives.
For two years, the diagnosis remained between Mick, Elizabeth, and two doctors. But as it progressed, he couldn’t hide it any more — every six months there was something new.
When Mick could no longer climb stairs without hanging onto somebody if there wasn’t a railing, people started getting suspicious so he finally went public with the disease in 2006. Now, he doesn’t even have to tell most freshmen.
“They just accept it as ‘that’s coach,’” Mick says. “Sometimes his legs give way, sometimes he’s wobbling, and he sits down a lot. But that’s who he is.”
For the former semi-pro soccer player, it can still be a hard thing to sit on the sidelines. The saddest thing, he says, is that he can’t run.
The couple has two different types of MS, Mick’s being the worse of the two.
Elizabeth’s is relapsing-remitting, meaning the flare-ups come and go over time. Mattson says the average is about one per year, but it depends on the person. It is the most common type of MS, making up 90 percent of all diagnoses, but 50 percent of those cases will become the secondary-progressive type, like Mick’s.
Rather than staying even in between exacerbations of the disease, the MS slowly progresses downhill over time in the secondary-progressive type. It’s not a straight line downhill, but one with a couple plateaus and periods of staying even rather than worsening.
A competitive marathon runner who was used to finishing at top of the pack, Elizabeth had previously qualified for the Boston Marathon twice and completed 16 marathons. She ran her last one in 2009, at age 48, bringing up the rear of the race after training an IU student.
“But I’m okay with that,” Elizabeth says. “I’m forever grateful that I’ve reached that pinnacle. I’ll never be able to qualify for Boston again, but it doesn’t mean something new isn’t on the horizon.”
While the disease may have changed their relationships with their respective sports, they credit being athletes for their strength to both take on the disease.
They both now face a new opponent in a game of give and take.
“Twenty-two years ago, we were just in love and happy and ready to take on the world. If anybody had said, this is what you’ll encounter, I would’ve said ‘oh man, I’m not sure if we can deal with that or how will we deal with that,’” she says. “Twenty-two years later, I’m nothing short of amazed of the strength and perseverance that we’ve had.”
Being able to understand the effects of the disease on each other has helped their marriage.
While many couples might fight over doing dishes, the Lyons know that there might be days when it just might be too physically exhausting to do so. If one of them needs to go to bed early, the other one will do the dishes. It’s a silent understanding between them.
“If Mick’s doing something and I sense that he’s struggling or he can’t do something then I pick it up and take it on myself,” Elizabeth says. “Stuff that? other couples don’t see, we see in each other.”
There’s no cure for MS, only some medications that can reduce the disease activity or exacerbations.
Elizabeth takes hers through injections. Mick has tried that and medications through IV infusion, but none of them worked well. Three months ago, he started taking the first-ever oral medication for MS.
He says it’s too soon to tell if it’s working or not.
“I get frustrated sometimes ‘cause I can’t win. That’s what I was made of. I wanted to win everything,” Mick says. “And it’s just not possible. It’s taken me awhile to figure out, and she reminds me that I’m not going to win.”
Standing in front of the soccer goal in Armstrong Stadium, Mick and Elizabeth smile with their arms around each other as the camera clicks away.
Elizabeth had just gotten off work from her job as an academic advisor at Ivy Tech. Mick’s season is over. His Hoosiers finished 6-12-1.
“Do you want to switch sides or anything?” Mick says, his left arm around her.
Elizabeth laughs and shakes her head.
“No,” she says. “This is the side you need me on.”
The Lyons’ story goes deeper than the love found inside greeting cards or heard in a country song.
Love has become disposable to many people, something that can easily be signed away by divorce papers. The Lyons have made it for twenty-two years, for better or for worse, in sickness and in health.
It is a resilient love, a resilient couple. One that knows how to dig deep and give it their all, whether its for their health, their relationship, or their Hoosiers.
She helps him string up the soccer goal before they walk back to their cars.
No canes. No wheelchairs. Only, if you look closely, a slight limp on Mick’s left side.