C. R. Reardon

The Edification of Paul Baker

Paul Baker was a collegiate All-American baseball player.  For all intents and purposes, he was the All-American.  Paul grew up in Gloucester, Massachusetts, playing tag or hide-and-seek with the neighborhood kids on summer nights, and, as a teenager, spending free time at the mall or batting cages.  Baseball doesn’t require a superb physique, but Paul lifted weights in the morning, ran five miles at night, and weighed in at one hundred-and-sixty pounds. With his mother’s big, green Irish eyes and his father’s lush, brown Italian hair, Paul had no problem attracting females.  He had had a girlfriend of four years named April, but their relationship ended when she left to go to college in California. After his freshman year, Paul finished playing summer baseball for the Hyannis Redhawks in the Cape Cod League where his parents, Mary and John, rented a house in Chatham to attend their son’s games.

One bright autumn day back at college, Paul noticed that he could not throw the baseball with the same rocket-like pace he was known for, so he saw the trainer.  The trainer told him to see a doctor, and the doctor, suspicious of the neurological symptoms, sent him to a specialist in Boston. On September 25th, 2010 Paul Baker was diagnosed with a severe form of muscular dystrophy.  He was nineteen years old.

Over the next year, Paul would leave school, and those around him would have to go through the torturous ordeal of watching his body wither like a diseased tree.  Paul came to the conclusion that there was nothing he could do but accept the pain.

By November Paul had lost the strength in his legs and had to purchase an electric wheelchair.  The holiday get-togethers were heartbreaking that year, especially for his extended family that was not able to witness his day-to-day decline.   By February, Paul couldn’t lift the spoon in his cereal. His arms were noodles, making it impossible to utilize his saving grace—the computer—so Easter Seals had to come to the house and supply him with a technology that allowed him to click and type with a red sensor-dot on his forehead.  By May, his once booming voice had become a barely audible slur amplified by weakened vocal chords. Over the summer, Paul and his dad (who had a bad back from years of working as a building engineer) developed a routine: at nine o’clock every night before his fifty-six-year-old father went to bed, Paul’s dad would place a plastic container beneath his son’s slack-jawed mouth, hold him upside-down by his ankles, dizzying Paul and spinning the room’s furniture like a carousel, and shake him repetitiously to get the mucus out of Paul’s lungs because he was too weak to cough it up on his own.  

But this is not a sad story.  After accepting the depression that would surround him like a Tallahassee heat, Paul enrolled in a six-week clinical trial that had positive results and would provide him with a few more years on this Earth.  It was then that Paul decided to use the hand he had been dealt to raise money for his disease and make individuals more aware about the tribulations of life in a wheelchair. Awareness is the door to empathy, and this world has a dearth of it—or at least Paul thought so.  

Paul sent a request to family and friends to donate fifty dollars to research the diseases of muscular dystrophy, and to borrow a wheelchair from someone or somewhere and spend an entire day in it.  “This,” he claimed, “will improve your resourcefulness.” Having built up so much good will and popularity as a star baseball player, Paul’s friends gladly participated. When they entered their university classrooms in wheelchairs, they told the professor ‘they were conducting a social experiment’—though Paul didn’t like his life being categorized as an  ‘experiment’, as though it was something scary like the unknown of his medical trials. Nonetheless, some of Paul’s friends posted videos from the perspective of someone in a wheelchair, or just gave their negative or positive reflections on their experiences. That’s when everything changed.

The videos went viral, and more and more people started donating to muscular dystrophy, and giving the ‘day-in-a-wheelchair’ challenge a try.  Even groups called ‘wheeling parties’ that consisted of friends in various workplaces participated, and eventually people in the New York television studios took up the challenge.  It wasn’t long before big-time celebrities donated large sums of money to muscular dystrophy, and posting videos of themselves in wheelchairs and their epiphanies—in part for notoriety, in part because they had the money to do so, and in part because some celebrities were good people and this challenge presented an opportunity to disregard the cynicism of the media and perform an act of kindness.

The phrase ‘fifteen minutes of fame’ has never been more apt—actually, that duration of time might be too long.  It might be nice to see your video go viral or have your name trend on Twitter, but if you want your cause to spread or have staying power you need a celebrity supporting it.  Once the American celebrities got involved, celebrities from other countries donated money and posted videos, and even American and international politicians followed suit. Paul and his cause had become a global phenomenon.  He got, with the help of his father, to throw out the first pitch of the Red Sox 2012 season opener at his beloved Fenway Park, and to travel the world—health permitting—by lecturing at international universities. The opportunity to travel opened Paul’s eyes (which were the only lively part of his person): as a Millennial who had been lied to about the Iraq War and watched the subsequent atrocities his country would commit, Paul often felt politically conflicted, living in a conservative household. But now he noticed how advanced America was in terms of handicapped accessibility.  He didn’t know if this was because America was richer than other countries, or because, being a relatively young country, America’s architecture was more modern and conducive for accessibility than in other antiquated places, but he came to appreciated the stars and stripes more than most.

Paul was also starting to realize that despite the misfortune that had come his way, he was lucky: he was here, breathing, with the ones he loved, making a difference.  And he had flipped the script on people’s views and discussions of the disabled—while raising more money than he could fathom for muscular dystrophy—by getting people to focus on accessibility and disability as social issues instead of as media pieces on the nightly news—and that was something.

By August, though, Paul had grown tired of his challenge, of his creation.  The luster had worn off, and like any capitalist enterprise, the boom period was over, his creation was growing stale and would peter out. He was worried that the arduous nature of his ability to communicate his increasing lack of passion for the project was not coming across to those around him.  Paul’s concern stemmed from the belief that the whole thing had grown too fast, out of his control, and that others were the marionette—not him. He didn’t want to watch something that meant so much in his life atrophy. Paul’s best-case scenario saw him raising a few thousand dollars (maybe), and some of his close friends learning to see things from his perspective, so they could relate better to each other and share in a darker humor that would make others uncomfortable.  But Paul’s cause had become a craze, a fad, and no longer had the ingredient of righteousness to it. He wasn’t inspiring individuals to give donations anymore, he was shaming people into giving away their money, and the more superfluous the awareness, the more the voices of those suffering from the disease became muddled. This inauthentic feeling did not rest well in Paul’s stomach, so he decided that he had to get out of Boston, had to do something different that gave him a more dynamic identity.   

So, Paul decided to secure an internship with a Massachusetts senator in Washington D.C.  He believed that if a person wanted to change things, they had to do it from the inside (even though the success of his fundraising campaign and the fact that it had permeated the culture’s psyche would prove otherwise).  

When looking to flee Boston, Paul wanted to avoid the hassle of New England winters in someplace like the Caribbean or South America, but he knew, no matter how many benevolent platitudes he received, that some medical complication or tragic accident was just around the corner.   This urgency, that he would always feel, resulted in Paul settling for a slight improvement in weather in the nation’s capital where he thought he could have his greatest impact. It was a meticulous process to find Paul a place to live. He had been in the wheelchair for a year and a half, so he and his parents weren’t experts at travel planning, but they had done enough with Paul’s speaking engagements that they found a licensed caretaker to come in the morning and help him get dressed and then again at night to bathe him, make him a meal, and give him his medicine.  The tricky part was finding a modest apartment that Paul could not only get in, but also use the bathroom and maneuver his electric wheelchair around. The internship was for three months, so Paul’s parents visited every weekend to ‘immerse themselves’ in a city they had never visited—really to watch Paul, though.

He thought a lot about April on those lonely D.C. weekdays, her prairie-like hair, her chestnut-colored skin, her warmth—although most of Paul’s senses were gone, memory made April’s warmth tangible.  Every morning a paid-for van would pick Paul up to go to work; every day a different driver would strap his wheelchair to the floor; every day Paul would watch the city blur into a passage of time and wonder what April was doing, how she was.  He often thought about how much easier his life would be with April around, how she could remedy the burdens in his life: someone buttoning his shirt in the morning who was familiar with the contours of his body, someone who knew the right temperature to cook his meals so they didn’t burn his mouth, someone to watch the clouds drift with, someone he knew to wash the soapy bathwater over his pale skin instead of the awkward circumstance of a stranger doing so—as long as April talked to Paul in an adult tone, about real, adult matters, he didn’t mind her controlling his limbs like a puppet, being her object.  He just wanted to smile.

And he would, like all of us do, eventually.  Paul would leech his mind to something else, anxious for the next day of work to come.  He couldn’t stop the drool from collecting on his keyboard while he did his favorite thing on the Internet, look at pictures of international super models (he had worn himself out on porn in high school); he would watch videos of songs or live performances he had heard and seen a thousand times on YouTube; and he would have his Kindle read John Grisham novels to him—anything to pass the time.  

No, this is not a sad story—just a real one.  During the day of December 4th, the last Tuesday of his internship, Paul would observe a senate hearing on a U.N. treaty to stop discrimination against the disabled and hold other countries to the same standards as The Americans with Disabilities Act.  The treaty (which had already been passed but needed to be ratified) was voted down 61-38. Opponents claimed the treaty would liberalize abortion laws, alter home schooling laws, and impinge on the sovereignty of the nation.  Paul ended his internship three days early and took a train back to Boston that night.

Disappointed by his fellow man, Paul became misty-eyed on the train ride home.  He wanted his disabled brothers and sisters to know that they didn’t have to start a global fundraising phenomena or be a member of government to impact daily life.  And from this experience he understood the long road the disabled must travel for change, and he realized that it would, in fact, take a sustained myriad of small acts of defiance to better the quality of life for the disabled.  He just hoped he had contributed in some way.

On July 2nd, 2013 Paul Baker died in a Boston hospital when the phlegm from a case of pneumonia drowned his lungs.  As of this date, eighty-four-point-two million dollars has been raised in his name for the diseases of muscular dystrophy.  Thousands attended his funeral.

Paul’s jerseys still hang in local bars.

[Image Description: A handicapped white man with brown hair and tinted glasses in jeans and a  green T-shirt sits in front of a brick staircase, flanked by gray picket-fence on either side of him.]

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