In the fall of 2010, Ben Harris was attending a scientific conference in Barcelona, and he felt weirdly nervous. A medical physicist specializing in radiation treatments for cancer patients, he was scheduled to deliver a lecture titled “Using an Oncology Information System in a Mixed Proton/Photon Environment,” but his nervousness had nothing to do with the complexity of his research. The thought running through his head was, “I hope they don’t think I talk funny.”

A few months earlier, Harris had started feeling reluctant to speak in front of groups of people. He couldn’t pinpoint why. His apprehension gradually took on a physical dimension; he began having actual difficulty speaking. His tongue wouldn’t work right. The condition was subtle enough that it went unnoticed by others, but, according to Harris, “No one realized it was taking a greater and greater effort on my part to sound normal.” By the time he got to the conference in Barcelona, he was more concerned about how he was going to get the words out than what he was going to say.

Harris had Googled “difficulty with speech” a dozen times before, with ambiguous results. Then he noticed his tongue twitching and went back to the computer. “Twitching” led him to the word “fasciculation.” That’s when “the search results lit up like a Christmas tree with ‘ALS,’” he recalled.

ALS is amyotrophic lateral sclerosis, or Lou Gehrig’s disease, named after the New York Yankees first baseman who is thought to have died of the disease in 1941. It affects nerve cells in the brain and spinal cord that control voluntary muscle movement. People with ALS lose strength in their arms, legs, and facial muscles; it becomes increasingly difficult for them to walk, talk, swallow, and, eventually, breathe. Many ALS patients choose to use feeding tubes and ventilators to prolong their lives. Some become paralyzed. Nearly all of them die within two to five years of their diagnosis.

According to the National Institute of Neurological Disorders and Stroke, between 20,000 and 30,000 Americans have ALS right now. Approximately 5,000 people in the U.S. are diagnosed each year—two of every 100,000.

Harris was diagnosed in January 2011, at the age of 44. By the summer of 2012, he could no longer speak. A year later, the smallest movements left him out of breath. He had twice run the New York Marathon, but now he needed help getting up if he fell. He choked easily and swallowing was painful, so everything he ate had to be puréed in a blender. Typing, his chief method of communication — and one he used so prolifically that many people did not realize he was sick — became more challenging as he lost strength in his hands and fingers.

Harris described his experience with ALS during a two-month email correspondence with NMH Magazine last summer. He wrote that it was nothing like cancer, the disease he had fought professionally for most of his career. “You have to be strong to get through the therapies, but even someone with the worst prognosis can beat cancer,” he wrote. “You don’t fight ALS. You can’t. It takes down the strongest, healthiest people with ease.”

Most ALS cases, including Harris’s, occur randomly, without an identifiable cause. There is no known cure or treatment. There is a single drug approved by the U.S. Food and Drug Administration that can help prolong an ALS patient’s life for up to six months, but it does not halt or reverse the progression of the disease.

A handful of other drugs are in clinical trials, but the government approval process is slow, and the window of opportunity for enrolling in the trials is narrow; volunteers typically are turned away if they have had symptoms for more than a year. Harris was lucky. In the summer of 2011, he joined a study for a drug called NP001, manufactured by Neuraltus Pharmaceuticals. “By the time I enrolled, I was having a very difficult time swallowing liquids, and I noticed significant improvements almost immediately after my first dose,” he wrote. Suddenly, he could drink a cup of coffee without gagging and choking, talk more clearly, and grip objects in his hands with more strength.

The study lasted five months. When it ended, Harris lost access to NP001. He calculated that by the time Neuraltus launched its next phase of research on the drug, his ALS would be too advanced for him to enroll in any official study. With no other options for treatment, he did what any frustrated, resourceful scientist might do: He started his own drug trial.

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Harris had long been a person who, when he saw something missing in his life, went and got it. He grew up in Watertown, N.Y., and persuaded his parents to send him to Northfield Mount Hermon because he was itching for “something new and challenging.” On campus, he was a student leader in Overtoun, appeared in a campus production of Shakespeare’s As You Like It, and joined a student theater group that performed political skits on the sidewalks of downtown Greenfield, Massachusetts. NMH was “one of the most wonderful experiences of my life,” Harris wrote. “It shaped the person I am today to a greater extent than anything else during my formative years.”

He studied physics at Columbia in New York, then earned master’s degrees in both philosophy and physics at the University of California at Riverside. He found a job at the Loma Linda University Medical Center and discovered the field of medical physics, which allowed him to use his training in a “meaningful and gratifying way,” he wrote. Meanwhile, he married, and in 2005, his son was born.

Harris and his family left the West Coast for Bloomington, Indiana, in 2006, so Harris could help launch a health care company called ProCure, which builds and manages proton radiation facilities across the country. As the company’s director of medical physics, Harris was a leader in setting up treatment centers at hospitals, spending weeks at a time away from home, training other physicists to design equipment, fix equipment, calculate dosages, and configure software. “A medical physicist is the glue — solving the problems, making sure everything works,” said Niek Schreuder, the ProCure executive who wooed Harris to Bloomington.

Mark Pankuch, a physicist whom Harris worked with in Oklahoma City and Chicago, calls him a “brilliant teacher” and a “soldier.” “Ben would work seven days straight with six hours of sleep a night,” Pankuch said. “He was the kind of leader who, when you’re standing behind a wall and hear that charge, he was the first one out.”

But after the ALS diagnosis, Harris stopped traveling for work. He accepted that he would not grow old with his wife, Rebecca, and mourned the fact that ALS would rob his son, Rawden, of a father. But it had never been his way to fixate on things beyond his control. His approach to ALS was no different. “Wallowing serves no practical use, so I keep focused on the task at hand,” he wrote.

The task he assigned himself was a big one: Help search for a cure for an incurable disease. During the Neuraltus NP001 clinical trial, Harris met several like-minded patients in online ALS discussion forums, and they began trying to determine what was in the drug. It took roughly six months of detective work — researching scientific papers and patent documents connected to Neuraltus scientists — to figure out that one of the ingredients was sodium chlorite, a simple, readily available chemical that often is used to purify water.

“This was where the clinical trial transitioned into a DIY (do-it-your- self) trial,” Harris wrote. He and his collaborators began giving themselves intravenous infusions of sodium chlorite mixed with distilled water. They reported their findings on the website Patients Like Me and in their ALS forums. Harris documented temporary improvements in his swallowing after some of the infusions, but not nearly what he had experienced with NP001.

So he looked elsewhere, experimenting with nearly two dozen chemicals, drugs, and dietary supplements over the next year and a half. He underwent a stem cell procedure by an Alabama physician who had been using adipose (fat)-derived stem cells to treat joint injuries, and it improved his muscle function for a short time. He adopted a vegan diet, which did nothing to slow the degenerative process of ALS, but it made him feel better overall.

“That’s the philosophy Ben had, that everything is fixable,” Schreuder said. “You have to be willing to dig in and work long hours and try different avenues, and that’s just what he did.”

At first, Harris felt strange directing his own care — which included starting his own IV — but when he realized that there were no physicians at his local ALS clinic who were willing to help him try new treatments, he forged ahead. Cathy Collet, an advocate for ALS research whose mother died of the disease 16 years ago, called Ben a “rock star in the world of ALS patients ... a leader in a merry gang of people trying to figure this out.” In the spring of 2012, Harris’s sodium chlorite research drew the attention of The Wall Street Journal, which described his effort and that of his co-experimenters as “one of the most dramatic examples of how far the phenomenon of do-it-yourself science has gone.”

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Plenty of ALS patients experiment with alternative or untested treatments, but what made Harris stand out was his methodical effort to document and share everything he did. When he went online to report on his research, Harris signed each of his posts, “If it is done in secret, it is done in vain.” The stem cell procedure he underwent was performed on 21 people, but he was one of only two who recorded their results online. “Having data from those other 19 people could have resulted in an experiment with real statistical significance,” Harris wrote. “We don’t know if they improved, felt no impact, or, just as important, if they had an adverse reaction.”

The possibility of that adverse reaction is what worries scientists and medical researchers like Dr. Piera Pasinelli, the science director at the Packard Center for ALS Research at Johns Hopkins University and a professor of neuroscience at Jefferson Medical College in Philadelphia. “The main concern is safety,” Pasinelli said. “I understand and share ALS patients’ frustration and urgency, but I believe they and the medical community should work together rather than patients testing drugs — or worse, combinations of drugs — on their own. Each patient is different, and a self-tested drug that is not harmful to one person may be deleterious to others.

“The goal is to have more drugs in the pipeline and more trials lined up,” Pasinelli said. “Every day we find another gene, another pathogenic pathway, another cell type that is involved in the disease, and each of these elements is a potential therapeutic target. Unfortunately, it takes time to develop the right drug for each, or all, of these targets.”

Harris didn’t have time. He continued experimenting, even when he was predicting that he had only a month or two to live. One of his final tests focused on three peptides — small proteins — with the potential to treat ALS symptoms. He hunted down academic articles to determine the drugs’ chemical structures and ordered them from manufacturers, bypassing what he estimated to be 10 to 20 years of government-approved testing. “Two of these peptides have been tested in humans already, so I know they are safe,” Harris wrote in late June. “The other has not had any adverse effects in mice, and it is rare for a drug to harm a human but not a mouse. At this point, though, I am not too concerned about adverse consequences.”

When he was ordering the peptides, Harris could still move around his house using a walker, make his own meals, bathe himself, and use the bathroom on his own. He had decided not to accept a feeding tube or a ventilator. “The day I cannot get myself up and into the kitchen to make myself a meal is the day I stop eating altogether,” he wrote.

That day came on Aug. 6, 2013. “I have decided to stop taking nutrition today,” he wrote.

Harris’s physical decline changed what he called his “novice philosopher” belief in Descartes’s mind-body theory: that the defining characteristic of humans is the mind and the intellect. “I first realized this when I lost the ability to laugh,” Harris wrote. “I had a loud, probably annoying, laugh that came from deep in my gut. I can still see the humor in things, but I cannot experience humor anymore.” Being unable to do other physical activities such as play with his son, exercise, or work with his hands removed Harris, little by little, from the man he used to be.

But it didn’t stop him from pursuing his relentless DIY research, nor did it change his pragmatic way of looking at the world. He kept working as long as he could. His wife worked, and his son went to school and played in chess tournaments. They spent quiet evenings at home, as they always had. “I take life at its face value,” Harris wrote. “I simply ask myself, ‘Am I proud of what I am doing and how I am treating those around me?’”

When Harris began joining online ALS discussion groups soon after his diagnosis, he chose the screen name “HappyPhysicist.” “People often ask me if I take antidepressants, and they are usually surprised when I tell them I am not depressed,” he wrote. “Despite knowing I would live only a few more years, I was still happy. Compared to the innumerable souls who have endured the cruelties of nature or of fellow humans, my life has been one touched only by fortune and compassion. I have nothing to be sad about.”

Throughout his experience with ALS, throughout every experiment that didn’t yield the desired results, Harris understood that any treatment for ALS would come too late for him. His training as a physicist had taught him that all great scientific advances come from getting something wrong many times before someone gets it right. He wrote, “Had Galileo or Kepler not meticulously recorded their observations, Newton never would have deduced the laws of motion.” Harris saw his role not as someone who might find a cure for ALS, but as “one of many who will keep careful records so that someday, someone else will see a pattern.”

Ben Harris died at home in Bloomington, Indiana, on Aug. 15, 2013.

This story was published in NMH Magazine in 2013. Photo by Kevin Foster.