Making a new life after diagnosis, he inspires.
In 2008, after a record-breaking career as a pitcher for the University of Hawaii Hilo, and after being offered a contract to pitch professionally in Belgium, 23-year-old Emil DeAndreis was overcome with pain and swelling in his joints. He was diagnosed with rheumatoid arthritis/rheumatoid disease (RA/RD) one month after his last college pitch.
His dream of being a professional baseball player smashed, Emil could have lost hope for a fulfilling life. Instead he became a teacher, a coach, and today—eight years later—a renowned author.
A Brief Flirtation With Symptoms
In high school, Emil had bouts of random swelling throughout his body, which felt different from how his RA/RD expresses itself today. Back then, the pain was much more potent, he says, and much more phantom—the swelling would pass just as quickly and unpredictably as it came. Some mornings, he would awaken to pain in his shoulder (not his pitching shoulder) that was so bad he needed help putting on his shirt. Some days, his collarbone would swell up so much that it hurt to breathe, laugh, or move.
The weird thing was, it was gone so quickly that I didn’t think much of it. And then it vanished altogether, and I was offered a college scholarship so I just moved on.
He also didn’t want to give his parents anything to worry about, so he mostly kept it to himself.
A few years later, the pain and swelling were back with consistency, and Emil had a diagnosis—and had to make a decision about the course of his life.
Exercising Mind and Body
Emil had always loved writing, so he shifted his focus to that pursuit. He started work on a master’s degree in fine arts at San Francisco State University and honed his craft. Near the end of his graduate studies, he learned his degree qualified him to work as a writing professor and he jumped at the chance. He now teaches at College of San Mateo near his home in San Francisco.
Post-diagnosis, says Emil, writing gave him fresh opportunities. “Professional baseball was gone for good. But in an odd way, the diagnosis opened up doors for me as well,” he says. He has written two books, most recently Hard to Grip: A Memoir of Youth, Baseball, and Chronic Illness. He used writing to tell his story in a way that evokes humor, empathy, and a deeper understanding of what it’s like to be young, sick, and challenged to find a new path.
As part of his treatment plan, Emil exercises in a variety of ways: “Whatever my body is up for,” he says, which includes swimming, jogging, weightlifting, and more.
“And writing is a great exerciser, and occupier, of the mind,” says Emil. “It is cerebral, and challenges me in the ways pitching once did.” He’s currently working on a third book.
“The mind is more important to tend to,” he says. “If left to dwell and speculate as to what could have been, the mind can find itself in a dark place. It’s very important to find something to occupy it, to challenge it. RA doesn’t limit the brain—as far as I know—and this is the best tool against the stronghold of the disease.”
Preserving a Relationship
Now 31, Emil says the disease also made it possible for him to sustain a relationship with wife Kendall, who was his girlfriend at the time of diagnosis. “Had I gone off to play pro ball, I’m fairly confident the relationship would have been lost.” (Emil says she’s also his best editor.)
“We were recently married, but have been together almost 10 years—she knows who I am deep inside,” says Emil. He explains that he is averse to sympathy and doesn’t want a lot of attention day-to-day to his illness, and she gets it. “She asks me about once a month, ‘What’s going on in your body?’ and that’s all I need, to have that brief discussion.”
While they may not talk about Emil’s symptoms often, he says Kendall does lots of little things to take care of him. For example, if they’re taking a road trip and she notices he’s gripping the steering wheel with his left hand, she’ll take his right hand in hers and massage his hand, wrist, and forearm—giving him relief from the pain that often focuses there.
Overwhelming, Angering, Embarrassing
The symptoms of RA/RD are difficult to endure. Emil says it makes the ordinary excruciating: “Think of all the things you do on a daily basis that involve your body and movement. I mean everything: tying your shoes, turning on the water, pressing the brakes of your car. Imagine these things causing great pain. It’s truly embarrassing and at times overwhelmingly angering, to cringe when tying my shoes. I think that is the essence of what RA can be.”
“I’ve learned life humbles everyone, and in different ways,” Emil says. “Everyone’s got their battles they’re fighting, and in knowing this, I’ve learned compassion and empathy.”
Disparity in Treatment
One thing Emil is passionate about is the massive disparity in health care for people with RA/RD and other serious chronic conditions.
“The meds I take—biologics—can have truly absurd price fluctuations,” says Emil. “For the same one month supply of Orencia, I’ve paid $20 and I’ve paid $1,200, depending on my insurance at that time. That something can vary so greatly in cost, when it is the same product, and be so completely unaffordable to someone who desperately needs it, suggests that the ethics of medicine need a reevaluation.”
Emil says the situation is outrageous: “I depend on these drugs. I take a weekly biologic, and I receive a month’s worth at a time. But sometimes my symptoms ease up enough that I can stretch a month of meds to last me a few months. But there are people who need these drugs much more desperately than me—people who are waiting for that box to arrive in the mail on the dot, or they’re going to suffer. For them to possibly have to skip treatment because of price is criminal.”
And because of disparities in insurance coverage, he adds, the patients who need the medications most urgently are often the ones who have the most trouble affording them.
Emil says one common misconception is that because he was an athlete, his pain is caused by years of playing baseball.
“I’ve been on radio shows and they ask ‘Do you ever think maybe if you didn’t pitch so much in college, you would have avoided the disease?’ and I simply say no, and that gives me the chance to explain the nature of an autoimmune condition.”
Patients don’t cause themselves to have autoimmune diseases. But Emil says the compassion he’s learned from his own disease experience also makes him a calmer, kinder person when responding to people who harbor these kinds of misconceptions.
“People have so many things going on in their lives that they have to focus on,” he explains. “I can’t expect every person to understand every nuance of all chronic diseases. It’s not most people’s job to know all this stuff.
“And in 2017, when science is so strong and there are so many new diagnoses, it’s hard even for me to keep up. So when people are wrong, I’m very gentle with them. It’s always an opportunity to educate.”
Back to Baseball
You might think Emil would have a hard time participating in the sport he once pursued as a career, but in fact, he’s a baseball coach.
“The trajectory wasn’t conscious,” he explains. “It definitely was not like ‘Oh, I can’t play professionally, so I’ll go coach.’ In fact, I avoided baseball for a while, and was really resentful. So initially when I was offered the opportunity to coach, I took it but I thought it was kind of a drag.”
But a few years in, as he saw players develop and he built deeper relationships with them, Emil got invested in their success. “You see them struggle and persevere, and you end up rooting for them, wanting to see them succeed—and it’s now the best part of my day,” he says. He has helped mentor three pitchers who’ve gone on to play Division 1 baseball. He’s now coached for eight years at his old high school, and coaches on a volunteer basis at College of San Mateo.
“When I was a player, I focused solely on competition, so this is different,” says Emil. “It’s brought me closer to baseball, added depth and complexity and romance and nostalgia. It’s spiritual.”