Location: St. Paul, Minnesota
John Van Hecke grew up on a farm in southwestern Minnesota, where, he says, “guys like me generally don’t stay.” It was a physically demanding lifestyle and John was much more suited to building relationships than building fences. He had a wonderful childhood and still has a great fondness for his hometown of Walnut Grove (where the Little House on the Prairie books are set), graduating with just 30 classmates before heading off to Macalester College in St. Paul. But he had “no desire to farm,” and, he says, “a lot of desire to see Walnut Grove in my rearview mirror.”
It was not just the heavy labor on the farm that was a problem for John. Sports were not his thing either. In gym class, he remembers being last at any races or running events, despite his best efforts. (A gym teacher once told him, “I can see that you are trying really hard, but you are not getting anything for your efforts.”) In graduate school, he found he was exceedingly tired, more than could be explained by burning the candle at both ends. The answer (although he now realizes it was not the complete answer) came when he was twenty-nine years old. “I started coughing up blood,” John says, which led to a diagnosis of heart failure. “It was a head scratcher,” he says, since there was no history of heart disease in his family. He was prescribed the “standard cocktail of heart drugs” and learned how to manage his condition. “It didn’t really get in my way,” he says.
He was able to put his long-standing passion for politics (he traces the launch of his political career to knocking on doors for a Member of Congress when he was 11 years old) and his small town experience of working with people and building relationships into a career in Minnesota politics. He ran campaigns, worked as an aide to elected officials, including serving as district director to Congressman Bruce Vento. John took a break from politics in 2001 when he and his wife Betsy (whom he married in 1991) and their two young children moved to Hong Kong for two years for her job as an attorney for Dorsey and Whitney.
It was in Hong Kong that John first realized something was once again wrong. He couldn’t pick up his kids, who were two and four years old at the time. When they returned to the U.S., John consulted an orthopedist, thinking his difficulty lifting was perhaps due to an old knee injury from sledding. The orthopedist told him his knee was totally fine and, after performing a range of motion test, referred him to a neurologist. The diagnosis was swift and devastating. John had a fairly uncommon form of Muscular Dystrophy called Limb-Girdle MD. (It was actually the better of the two likely culprits for his symptoms because the other possible diagnosis was ALS.) Muscular Dystrophy is a hereditary genetic mutation that gets in the way of healthy muscle fiber production. It explained John’s heart issues since the heart is a muscle.
The diagnosis was an aha moment for John. “I get it now,” he remembers thinking. “This explains all of my weakness.” Looking back, he realizes that his disease impacted every day of his life, even though he wasn’t diagnosed until he had lived four decades of it. He now knows that he was always able to “adapt slowly and surely to my circumstances.”
“From the elbows and knees down,” John says, “I was fine.” So his handshake has always been strong and firm, belying the weakness he struggles with elsewhere. At first he simply walked with a “funny limp,” but each year his symptoms have progressed. He began using a cane (which served as a good visual indicator to people of his fragility) and then, eight years ago, he had to switch to a wheelchair. His limited mobility presented another problem, one neither John nor his medical team anticipated. It masked a growing and severe degeneration of his heart. “I have not been climbing stairs,” John says, “so I wasn’t able to see that I would have been winded doing so.” He had a cardiac defibrilator implanted fifteen years ago and he is now considering either an artificial heart pump or a new round of drugs to manage his arythmia that are so toxic your life expectancy is not long once you start on them. “I have reached the stage with my heart where the toolkit is much smaller,” John says. “The side effects of the next steps are risky and dramatic with likely terminal outcomes.”
His equanimity in the face of his health struggles and prognosis is remarkable. When I was sick, and people marveled at my positive attitude, I always noted that it is much easier to be courageous and positive when you are not given a terminal prognosis. I could withstand getting beat up because that meant beating the cancer. It is an entirely different matter, a far more inspiring kind of grit and emotional strength, when you can muster John’s kind of fortitude in the wake of degenerative and progressive disease. Reflecting on all of the change and loss he has had to endure, from not being able to lift his kids to being unable to play catch with them, to giving up playing the guitar and no longer being able to drive his specially rigged van to having to stop work, John says, “I realize I have lived with change my whole life. And I have gotten pretty good at adjusting to it.”
To be sure, he says, “there have been plenty of dark moments.” He notes that it would be easy to slip into a deep depression. But he makes a conscious decision to turn his thoughts around. “You can live your life to the best of your ability or you can be really angry,” John says. “ There aren’t a lot of good outcomes to being angry.” Instead of being frustrated at how poorly people shovel their walks (no small gripe when you aren’t ambulatory and you live in a state that has snow seven months out of the year), he chooses to focus on “the extraordinary kindness and compassion” he sees displayed every day. Friends calling to warn him about a broken elevator or a blocked entryway or strangers holding the door for him. “You can let it take you to a dark place or you can make a concerted effort to see the good in life,” John says.
I see the things that unite us as people – everyone doing the best they can under difficult circumstances, like his rural community who doesn’t see things the way he does, but underlying core values are the same.
Instead of dwelling on his misfortune, John focuses on the silver linings. His cardiac defibrillator has twice saved his life, jolting his heart back into a normal rhythm. “Without it,” John says, “I would have died.” He sees every day since as a gift, and one he is determined to live and enjoy as much as he can. “It is all frosting on the cake at this point,” John says.
What is hardest on him is the impact this all has on his wife, children and father. “My dad will outlive me,” John says. “And I know that is really hard on him.” But he is grateful that his children are grown (they are both in college) and, as hard as his health challenges have been on his marriage, he also appreciates that they have brought him and Betsy closer. “It has been a
an extraordinary reinforcing experience with my wife,” he says. “We both feel that we had a good relationship to begin with but has brought us even closer together.”
Another positive for John has been the outpouring of support and love he has received, from friends and colleagues across the world, in response to a recent update he sent out about his latest health setback. “I am trying to do a better job of living in the moment,” he says. He jokingly says that he has reached the stage where he is “the hero of his own narrative.” In fact, he says, we all should be. Agreed and thanks, John, for leading the way.