Baldelli adjusts to ordeal
Outfielder realistic about rare disease
It became a compulsion. After listening to all the doctors' medical jargon, all those words without meanings, Dan Baldelli just needed to hold on to something. He chose a keypad.
"It feels like I haven't been asleep in a couple of years," Baldelli said. "I would fall asleep and wake up in the middle of the night and look up doctors and Google everything I was hearing from [Rocco] to find some answers."
It was something, at least. With his son Rocco, a former first-round draft choice of the Tampa Bay Rays, grappling with unexplained muscle fatigue, Baldelli spent his nights typing away on his computer, trying to learn more about Rocco's initial diagnosis of mitochondrial disease.
Even that, though, wasn't the final word. Not only did this offseason bring Rocco from Florida to Boston, closer to his Rhode Island roots, as the free agent outfielder signed with the Red Sox, it brought him a new name for the disease that kept him out of baseball for 14 months. It brought him channelopathy.
"We were waiting for the taxi outside of the Cleveland Clinic, waiting to go back to the airport," Dan Baldelli said. "I was jumping for joy. I was slapping high-fives. As a parent, that was the best news I could have got ten, that it wasn't a debilitating, progressive disease.
"From the doom and gloom that I was reading, that [mitochondrial disease] was progressive and could shorten your life span, who knows how many years you have?
"To me it wasn't about the baseball. It wasn't about you can go play again. I was saying, 'Wow, I'm going to get to go to bed tonight and probably sleep past 1 o'clock [a.m.]."
"It was muscle fatigue," Baldelli said. "A lot of people think I'm tired all the time. They think that I'm just tired, that I'm sleepy. That's not necessarily what it is that I've been going through.
"Back when I wasn't feeling as well, it probably felt like I had just run 5 miles and I wasn't doing much, probably doing a normal baseball workout. My legs felt tired."
While Baldelli has shared his diagnosis of channelopathy, that doesn't explain everything. Channelopathy does not describe just one disease. Instead, there are six or seven types of channelopathy in muscles caused by abnormalities in the tiny pores called channels. There are four channels - for sodium, potassium, chloride, and calcium.
"The muscle works because these channels remain closed when they're supposed to or open when they're supposed to," said Dr. Allan Ropper, a neurologist at Brigham and Women's Hospital, who has not examined Baldelli. "When they don't, that's when you get these diseases.
"The nerve produces an electrical impulse, like a wire touching the surface of the muscle, [to] open up these gates to allow, say, sodium to come in."
Almost all of these diseases are congenital, and they are usually diagnosed in the teenage years or in young adulthood. The diseases are similar in that they produce muscle weakness. But while channelopathy is quite different from mitochondrial disease, according to Ropper, neither is easy to diagnose.
Adding to the difficulty of diagnosis is the fact that channelopathy is a rare disease, something Ropper said a general neurologist might see in one or two cases in a career. But because Baldelli has chosen not to be more forthcoming, it's impossible to know the specifics of the disease or how it will affect him this season.
"Rocco and the club are realistic that dealing with his condition will continue to be a process, but we are quite optimistic," Sox general manager Theo Epstein wrote in an e-mail. "He has worked hard with specialists to better understand his condition. He is entering a season, for the first time, with awareness of what works for him and his body, and what is counterproductive."
And while the father will discuss the emotion of the disease, the son would rather not. For Rocco Baldelli, living it was enough.
"I don't really talk about this stuff too much, try not to get into too much detail," he said. "I don't like talking about it. Probably the worst part of it is having to discuss it.
"When you're going through things that are negative, you try to stay positive. For the most part, I just decided that if anything new was going on, I would let everyone know. It got kind of tough to answer these questions when I'm trying to get on the field and play."
To get to that point - he returned in August to the Rays and helped them reach the playoffs for the first time and advance to the World Series - it was about finding the correct combination. A little bit of this, a little bit of that, a lot of concern and late nights and doctors' opinions.
"At the beginning, I didn't know what I was dealing with, which is the part I was worried about the most," Baldelli said. "Once I finally got an understanding of how to deal with it, I finally relaxed. But that took a while for me to get a grip on.
"The trainers and doctors I was working with spent a lot of time and a lot of hours trying to come up with something. It took a while, but eventually we worked with the right people and I got out there.
"I was tinkering with different things that would help me physically, medications and stuff like that. It's something that I found the right mix and I was able to get out there."
Though he wasn't able to play in back-to-back games with the Rays after he came back, there was a relief just being on the field and helping his team. In a short career in which he has already had more than his share of doctor visits, Baldelli would rather not spend his time mired in what-could-have-been.
"You just deal with it," he said. "Obviously, no one's career goes exactly how they planned it. In some ways it has, in other ways, obviously, it hasn't.
"I just deal with it. You can't feel bad for yourself. That's definitely one thing. There's not too many people feeling bad for you. There's no use complaining. As an athlete, you deal with what's been dealt to you. You go out there and do anything to get out there."
Amalie Benjamin can be reached at email@example.com.