By Carey Gillam
Updated: November 21, 2018 5:18 PM ET

Dewayne Anthony Lee Johnson has always just gone by Lee. He lived a modest life for 42 years, and was devastated when he was diagnosed with terminal cancer in 2014. Now 46, as he struggles with his advancing illness, Johnson has found sudden celebrity with a historic victory over one of the world’s most powerful and controversial corporations – Monsanto Co.

Johnson sued Monsanto alleging that he developed a deadly form of non-Hodgkin lymphoma after being drenched with the company’s herbicides, which he sprayed as part of his job as school groundskeeper. In Aug. 2018, a jury in San Francisco unanimously found that Monsanto had failed to warn of the carcinogenic dangers of its popular Roundup herbicide and related products, which Johnson sprayed regularly. Thousands of other cancer victims are also suing Monsanto and awaiting their own day in court, but Johnson was the first to take the company to trial. The jury awarded Johnson a jaw-dropping $289 million, which a judge slashed to $78 million on Oct. 22. Evidence revealed in the trial included internal Monsanto records that included discussions of “ghostwriting” scientific papers that asserted the safety of its products and plans to discredit an international agency that declared the main ingredient in Roundup, a chemical called glyphosate, to be a probable human carcinogen.

Monsanto, now a unit of Bayer AG, maintains that its products do not cause cancer. On Nov. 20, the company further appealed, seeking to overturn even Johnson’s reduced award and the trial court judge’s refusal to grant Monsanto’s request for a new trial. But the initial verdict already put Johnson’s life on a very different trajectory, bringing him international attention and heartbreak. He spoke with TIME about the aftermath of his case.

Before I got sick life was pretty good. I had a good job. We were renting this nice house; we found it through some friends. It was almost in foreclosure so we were able to rent it for a good price. Three bedrooms and a nice big backyard. I didn’t have a car so my wife Araceli would drop me off at work or I would ride my bike to the bus stop and take the bus to work. My job title at the school district was integrated pest manager, IPM. I did everything – caught skunks, mice, and raccoons, patched holes in walls, worked on irrigation issues. And I sprayed the pesticides, the “juice.” I had to be at work by sun up to make sure we had time to spray before the kids got to school. One of the guys I worked with didn’t want to wear protective gear but I told him he had to. You got to be careful with this stuff. On a typical day I would fill up my little container with raw pesticide liquid and then put that in the back of my truck and then mix a load before I would leave the yard. I’d mix it all in a tank and take that on the back of my truck and then head out to start spraying. I did not like using the chemicals but I loved that job. I would have been making $80,000 a year now if I was still there.

That day of the accident, the day the sprayer broke and I got drenched in the juice, I didn’t think that much about it. I washed up in the sink as best I could and changed my clothes. Later I went home and took a good long shower but I didn’t think, “Oh my god, I’m going to die from this stuff.” Then I got a little rash. Then it got worse and worse and worse. At one point I had lesions on my face, on my lips, all over my arms and legs.

When I first saw a doctor he was totally confused and didn’t know what was happening on my skin. He sent me to see a dermatologist who did a biopsy of a lesion on my knee. They sent me to UCSF (University of California San Francisco) and then to Stanford. A bunch of doctors came and checked me out. Then one day I got a call. They told me it was urgent, I had to come in to discuss my test results. When the doctor said I had cancer, my wife was sitting there with me. She started crying. I didn’t take it in right away. I don’t think I have still taken it in.

People want to say it’s Johnson v. Monsanto. They want me to talk about the company. I don’t want to do that. I don’t even want to say the company name. I just say ‘the big company.’ I don’t want to be slanderous. I’ve seen reports that I want an apology but that’s not true. I’m not a person who would think an apology would make me feel better – it certainly would not heal my cancer. This isn’t about me and that big company. It is important for people to know this stuff, to know about what they’re being exposed to. If people have the information they can make choices, they can be informed and protect themselves. I’m just a regular guy from a small town called Vallejo in the California Bay Area who happened to seek the truth about my failing health and found answers.

It’s not to say that I didn’t get mad. Plenty of things upset me as the evidence came out in court. I had called the big company early on when I was sick trying to get some answers and at the time the woman I talked to on the phone was real nice. But you see in the emails that came out that there was really no concern for me. They never called me back, that made me mad. I think not getting a call back is what made me pursue legal action. And then when I was in court and heard about the ghostwriting of the science and you see in the emails that everybody is just on a script; they program everybody to stick to the script about safety even if the science says different. [Editor’s Note: Internal Monsanto emails presented at trial showed that Johnson called the company in November 2014 reporting his concerns that his cancer was triggered by being “soaked to the skin” in a Monsanto herbicide during a work accident. “He’s looking for answers,” a Monsanto product support specialist wrote to Monsanto Dan Goldstein, the company’s medical sciences and outreach executive. Goldstein replied that the “story is not making any sense to me at all,” and said he would call Johnson back. But Johnson said he never received a call and Goldstein testified he could not remember whether or not he called Johnson.]

It seemed like the whole world was watching when the judge read that verdict, line by line, and then they announced a quarter billion dollar settlement, $289 million dollars. I think I immediately was paranoid; I literally asked the young bailiff if he could roll out of court with me because I knew the attention this would get and I’ve never really been a fan of attention or fanfare. And now it seems like that’s taken over my life. I get requests for media interviews from all over the world, and people ask me to come to their events and speak, and I’ve had people telling me they want to buy my “life rights” to try to get movie deals. I’ve had strangers try to suddenly become my best friend on Facebook, and then there was this kind of voo-doo priestess who somehow got my number, calling and calling and texting nonstop, promising she could heal me. When I shunned her, she said I would remember her on my death bed, wishing I had let her help me. It’s crazy. My kids are handling it well but they don’t dig the attention — we’re a small family and we’ve just been trying to deal with becoming nationally known.

Sometimes it really gets overwhelming with so many calls and requests for interviews or speaking events. At the same time, though, I see myself now as a major contributor for a conversation that’s been brewing for years, but since the verdict the conversation is a lot louder. I try to give each request my attention but just can’t due to my health and trying to help take care of my kids. But I am trying to make this a priority. I want to see all these schools stop using glyphosate, first California, then the rest of the country. That is my small mission. And as overwhelming as it is, I do feel a lot of support and positive energy from many people who’ve reached out to me. I have felt the love and support of people all across the world and that gives me a whole new sense of drive and responsibility. Some people send small gifts, trinkets. They write to me about their own cancers. One woman wrote about her husband and how he had died. I would say I’ve received thousands of letters. It helps.

A lot of people ask me what I want to do with my life now. I don’t think I’m superman. I go through those little moments when my head is down and my elbows are on my knees and asking myself what am I going to do? But if I can get healthy, not give in to what my doctors say is a terminal situation, if I can get treatments and get closer to a cure then I see myself doing good things. I would love to start a foundation. And I want to do more with my music and art. I paint with oil or acrylic and I do some charcoal drawings. I also like to write; I’ve self-published two books – “My Opinion” and “The Perfect Front.”

Some people think I’m a rich man, they speak to me as if I’ve been paid already, which is far from reality. The truth is the appeals could go on well past my life expectancy. We can’t really celebrate or make plans or go on vacation because we don’t have that money. I get a social security check now every month. It doesn’t even cover the cost of the rent. People are trying to help me out, but I’m basically broke. It’s exciting sometimes to think that we may get millions of dollars, but right now we know we’re not. We’re living the ghost money life.

I’m not even sure I would know how to be a rich man. I would like to buy a house, something close to my kids’ schools, something to give them security. But there are only so many things you can buy. I don’t think there is very much you can or should do with millions of dollars other than try to help people. As for the judge cutting the $289 million down to $78 million, I never thought of that $289 million as anything that would go in my pockets. I knew there would be legal limits striking it and so I never really thought of it as mine. I don’t know if I’ll ever see the jury award in my lifetime. Hopefully my boys will though.

Mostly what I want is for my sons, all three of them, to feel like they have a solid security blanket and to know that they are taken care of. I want to show them the good path and give them the quality of life that allows them to get educated, to understand life and culture and people. I hope that one day they will look back and say, “My dad made history and stood up for himself and for us.”

My chemo has stopped because I am supposed to have more surgery for this thing they biopsied on my arm. Apparently, it’s some new melanoma. And I’ve got this pain that I call “hot spots” on my foot and my arm, burning my wrist. Sometimes I call them “burners.” But it is what it is. I used to be all shiny and a handsome guy – now I’m all messed up. I feel like if you’re sick, you shouldn’t hide it though. Share it with the world and maybe you can help someone.

So much is going on, but the most important thing to me is my boys. I’m so proud of my boys. I hate to think about dying. Even when I feel like I’m dying, I just make myself move past it. I feel like you can’t give in to it, the diagnosis, the disease, because then you really are dead. I don’t mess around with the death cloud, the dark thoughts, the fears. I’m planning for a good life.

Carey Gillam is a journalist and author of Whitewash: The Story of a Weed Killer, Cancer and the Corruption of Science. She’s also a researcher for US Right to Know, a nonprofit food industry research group.

Contact us at editors@time.com.

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