Time and again, it seemed like she was looking for that “second wind” that athletes so often talk about, but it never really came.
“I just always thought, ‘Joanne, you have to get yourself in better shape,' ” she said last week.
She did not, however, become a track star.
“I just thought that maybe track wasn't my thing,” she said.
While in college, Steele was struck by an illness that was later diagnosed as pericarditis, an inflammation of the thin layer of tissue that covers the outside of the heart. Although she was hospitalized, she improved and doctors dismissed the illness as a temporary thing.
But it wasn't.
Steele still found herself winded at times, but it wasn't until she was married and giving birth to her second daughter that doctors figured out what was wrong. By that time, she was head coach of the University of Montana's women's golf team.
When Steele had been pregnant with her first daughter, Alexis, she'd gained about 15 pounds during the pregnancy. Once Alexis was born, Steele lost the extra weight quickly.
By the time her second child, Sydnie, came along two months premature, Steele already had put on 40 pounds. And this time, the weight didn't come off.
“I was in the office one day and someone asked when the baby was due,” Steele said. “I told them I'd already had her.”
Because her heart wasn't working correctly, Steele's other organs were starting to misfire, leading her body to retain water weight. And that's when doctors first uttered the words “hypertrophic cardiomyopathy.”
“That's when I realized for the first time in my life that I might die,” Steele said.
The disease is basically a thickening of the heart muscle. Over time, the heart holds less and less blood, and works harder and harder to distribute it. In cases like Steele's, the heart itself is affected.
For many, drug treatments such as beta blockers work to ease the heart's work, while others undergo a procedure that cuts away some of the heart muscle. Some eventually have to have a defibrillator implanted to shock the heart when it goes into the irregular beat of arrhythmia.
Steele has been through the treatments for the past six years, and while matters haven't gotten horribly worse, they haven't improved.
She has still slipped into atrial fibrillation, where the heart quivers instead of beats regularly, on several occasions, some lasting as long as 10 days.
“Last year I just decided that I wasn't getting any better and I was getting tired of wait-and-see,” said Steele, who is 35. “So we went out to the University of Washington and started doing some tests.”
During those visits, Steele learned for sure what she'd long suspected - her heart wasn't responding particularly well to the various therapies that generally help those with hypertrophic cardiomyopathy.
That meant that over the long-term, her best solution was the most radical - a heart transplant.
“It was a little bit of a shock, but on the other hand, it was good to know what I needed to do,” she said. “It's a huge thing, but it's not as mysterious as trying to figure how if your heart is ever going to work right again. The one I have now isn't.”
Joanne Steele is still busy with the details of getting on UW's heart transplant list. Eventually, the doctors there will assign a priority to her case and she'll go on the official waiting list. There's literally no way to know when the heart that will one day be hers will be available.
Steele doesn't really think much about that day, though. She's too busy with today. Right now, this very minute.
If anyone has ever latched on to the “Carpe Diem!” message of Robin Williams' “Dead Poets Society,” it's Joanne Steele. She is seizing each day, all day long.
“It's just the way I go about everything I do now,” she said. “I am just finding that I need to fully invest myself in whatever I'm doing, particularly when it involves my children, my husband and my family.”
She also makes time to be there for the six young women who make up the UM golf team. It's the least she can do, given the way they've been there for her through her medical problems.
“If I had six daughters like them, I'd be a very proud parent,” Steele said. “There's time I need to give to them as a coach, but there's also just time I want to give to them in case there's anything they need to talk about. They're away from home, you know, and sometimes they just need a grown-up to talk to.”
The golf team is hardly Steele's only support. Her family, her neighbors and her colleagues at UM have all stepped in to help. Her husband Cory is a student in UM's sociology department and the frequent trips to Washington have played havoc with his school schedule. But the department keeps finding a way to work around the scheduling problems.
“They've been so good to him and in turn he's been so good to me,” she said. “It's been a very pleasant surprise to see how many people have sort of come to our aid.”
A heart transplant will hardly be the end of Steele's medical mystery tour. The surgery and recovery are challenging - she'll likely spend three to four months in Seattle before she can come home - and patients face the lifelong possibility that their bodies will reject their new heart.
The average heart transplant patient lives 12 years after the surgery; the longest anyone has lived with a transplanted heart is 29 years.
Those facts might diminish the hopes of some, but not Joanne Steele. If there were a picture in the dictionary next to the definition of optimism, Joanne would be that picture.
“I'm probably the biggest optimist in the world, so this can't be an excuse to give up,” she said. “It might slow you down, but it can't make you stop what you need to be doing.”
These days, when the Steele family plays games or takes a walk, Steele takes things pretty easy. But she doesn't quit. If the girls are shooting basketball, Joanne is the rebounder. If they're playing baseball, she's what the girls call the “all-time pitcher.”
“I'm not about to take off running the bases,” she said. “But I'm also not going to sit on the sidelines.”
If anything, she's more involved than ever in the lives of Cory and their girls.
“I find that when I take them to their basketball practices and all the other parents are leaving, I'm staying,” she said. “I just want to watch them as long as I can.”
One day, someone will leave a heart that Steele's body can use. The heart could come soon, but maybe not. She's talked to transplant patients who've waited months, and she's talked to those who've waited years.
In the meantime, Joanne Steele is living life. Right now.
Life is two little girls waking up this Sunday morning and looking to their mother's smile. Life is the husband who drops everything to put his wife's health first. Life is helping another UM golfer become a better player and a better person.
“I'm living in the here and now, but I do have a goal that I'm working towards,” she said with a smile. “I am not going to be the all-time pitcher forever. I am going to run the bases.”
Reporter Michael Moore can be reached at 523-5252 or at mmoore@missoulian.com
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