Editor’s note: This interview has been edited for length and clarity.

The Flint water crisis began in 2014. My daughter was five and about to start kindergarten. I was the district manager for a retail chain. I started losing weight—I lost close to 50 pounds. My skin color changed. My hair was coming out. My bones ached. I felt like I was 95 years old. In July 2015, I collapsed at work.

I was watching the news, and they’re saying that there’s something wrong with the water. The state hotline was telling us all types of things, like they’re flushing the pipes; it will clear up. The water did clear up, but it smelled so bad. It would be clear, but it would smell like sewage.

I started going to meetings and asking what the hell was going on. I met other people like me. That’s how the Water Warriors got formed. We were all just talking on the phone and in each other’s living room at night about the things we were hearing and seeing around the city. We knew that what state officials were telling us had to be a lie. There was no way that the water was safe. I still have samples of the water that was coming out of my facet.

So we got together and everyone went down to City Hall and demanded that the emergency manager resign, and he did. From that point on, we saw that if we banded together we could start to move forward.

I lived right on the border of the city, in an apartment complex with over 500 people. It was not considered Flint proper, but I still had Flint pipes. “Your water is fine,” they were saying. “You don't have Flint water.” Actually I did. I had the hair and the teeth and all of the medical records to show lead poisoning.

That was the fire under me to be an advocate for the forgotten folk, not only in the building where I live but for the undocumented immigrants. Nothing was in Spanish, so we started knocking on doors. They were telling us that their family and friends in their country of origin were calling and sending letters saying that the water is poisoned. They were right here and had no idea. This was all the way up until 2016.

Flint Rising was formed in February of 2016 because we decided there has to be a group that is out canvasing the city for the people who don't have social media or don't speak English. They need to know that they should be using filters and not drinking the water and definitely not boiling water. The state just wasn’t doing their job and getting the word out on how to handle this. We got some grant money to basically canvas the city of Flint and inform people of what to do, what not to do.

People didn’t know you couldn’t run the hot water through the water filters because the city was just handing the filters out without really giving any instructions. So people were thinking, “Yeah, I have access to clean hot water now.” No you don’t, because once you run that hot water through that filter, it’s ruined. We had people who didn't know they were supposed to change their filter. They had their same filter on for six months.

Before I got sick, I was able to support my daughter. She went to a Catholic school. We took vacations. Then I got so sick that I lost my job and we had to go on welfare. My daughter had to change schools. In the midst of that I started noticing her behavior change.

I can't blame it all on lead poisoning. She was also suffering from PTSD. Here her mom has a good job and then suddenly we’re on welfare and she’s in a different school. But if you look up what lead does to a kid, you can see her picture right there. Her grades declined. Her attitude changed. She didn’t want to go outside anymore or ride her bike.  

Eventually the record for our pipes was found at the water plant. It was handwritten. Then they said, “Oh yeah, you do have Flint water.” For at least 18 months, I had been poisoning myself and my daughter and trying to figure out why we were so sick.

The illnesses have not stopped. I have had five surgeries. There are lesions that grow on me, and they have to be removed. I had to have a full hysterectomy. I have lost teeth, and my vision is terrible now. I'm only 44. I had my last surgery in November. My daughter is also still having problems. Last week she missed four days of school because of an upper respiratory infection.

So many people talk about lead, but bacteria has been a problem in the water, too. People have died of Legionnaires' disease. Then there are the people who already had compromised immune systems whether it was MS or Lupus, or people that used the water for dialysis. The cancer rate has spiked since the crisis. People die of cancer and respiratory issues and heart disease that they can’t fight. The exposure and the damage are still taking a toll.

When people say the crisis in Flint is over, I say it’s fake news. This is a city of a hundred thousand people that got poisoned, and we’ve only got 6,000 new pipes in place. Every home in Flint still has not been tested. Every kid still has not been lead tested. The state says that the water that’s been tested is coming back at a safe level, but that there are still contaminants and lead in the water. Either the water is safe or it’s not. 

At the state level, both sides of the aisle have failed us. The federal government has forgotten about us. We haven’t seen Trump in Flint. All these promises that he was going to fix infrastructure? We're still waiting. It’s just ridiculous that the only folks that are really keeping the Flint water crisis out there are TV personalities like Jimmy Kimmel.

We fought to get free bottled water, and now that’s been taken away. They only tested 100 homes to make that decision to stop providing water bottles. Even the state says we should still be using filters. You’ve got a city that is at 43 percent poverty. We can't afford our water bills, and we have to go out and buy water.

Until every pipe has been replaced—not just the service lines, but inside folks homes, too, because your hot water heater has to be replaced, your inside plumbing has to be replaced—until all of those things are done and we can turn our taps on again and not have to worry about catching Legionnaires' or a bacterial infection or getting lead poisoning, the water is not safe, and free bottled water should continue.

I want to say Flint is still in the same position that it was in four years ago and when I say that, I mean that people are still sick. People are still dying. The water is still not safe. The pipes still haven't been replaced, and we're still fighting the governor who poisoned us and his administration. Until Flint can be self-sufficient again, and we are on our feet and have our own water distribution plant here so that the Flint folks can trust the water, I don't think we can really move forward. 

More: Watch Gina Luster talk about the lead poisoning she and her daughter experienced.