When Steve Fobister came to protest outside the Legislature in 2014, the former fishing guide and chief came with his tent and an ultimatum.

Fobister, who was suffering from a degenerative neurological disorder, wanted a care home for those suffering from mercury poisoning in Grassy Narrows First Nation.

“He said quite calmly: ‘I will stay until I get some action. Or until I die,’ ” recalled former Indigenous affairs minister David Zimmer. “Though he and his community had a lot to be really angry about, he was a gentle person. His goal was to do something about it.”

Fobister’s brief hunger strike got Ontario’s attention and a promise to explore building a home.

He did not live long enough to see the facility built or any of the recent promises by lawmakers come to his community. Fobister died Thursday, not at home close to his relatives and culture, but in a Kenora, Ont., hospital after shuttling between there and a Thunder Bay facility 600 kilometres from Grassy Narrows.

His family buried the 66-year-old on the reserve Tuesday morning, planting a poplar pole in the ground, the wood engraved with a sign of his Sturgeon clan. His spirit name is Pa pii waa nii mo petung.

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Like a lot of the young men at the time, Fobister was a trapper and fishing guide to wealthy tourists who came to Grassy Narrows and the famous Ball Lake Lodge camp. He frequently ate the fish.

During the 1960s, the Dryden pulp and paper mill, operated by Reed Paper, dumped 10 tonnes of mercury into the Wabigoon River that feeds Grassy Narrows downstream. The potent neurotoxin contaminated the fish and poisoned the people who ate it. They developed tremors, slurred speech and tunnel vision, and lost muscle co-ordination. Scientists strongly suspect that old mercury still contaminates the mill site and continues to pollute the river.

What many residents of Grassy Narrows have, according to Japanese scientists, is Minamata disease — also known as methylmercury poisoning. It was first discovered in 1956 in Japan and takes its name from Minamata city.

Leg cramps, a stutter and loss of balance forced Fobister to stop working as a railroad engineer in the early 1970s. He was examined by Japanese researchers and diagnosed with mercury poisoning, he said.

He then became a band councillor, politically active on the reserve. An old photo, published in the Star in 1978, shows Fobister and Grassy Narrows resident Fred Land leaning on an Ontario government sign posted in their community. It says, “Check Before You Eat,” and provides guidelines on the consumption of contaminated fish.

Fobister lived off the land and loved eating game, though in his final days he struggled to keep down duck soup, said his niece Christine Pahpasay.

Around the campfire, telling stories, he made bannock. “Oh, it was nice and thick, and so soft. It was no effort, it came to him naturally,” Pahpasay said.

“I think he was always a leader, even when he didn’t hold a title.”

Fobister was the Grand Chief of Treaty #3, Chief of Grassy Narrows for five terms, a probation officer, environmentalist, hunter, Ball Lake Lodge manager and hockey coach of the “Famous Grassy Narrows Rockies.”

He was fearless but wasn’t loud about it, said Ontario Regional Chief RoseAnne Archibald, who joined Fobister in 2000 to protest clear-cutting of forests. “He was a very measured, calm, gentle, kind person. He loved his community. He was not afraid of anything. That’s the kind of person you want to go into a battle with.”

Fobister, along with government officials, helped set up the Mercury Disability Board in the mid 1980s to compensate those who can demonstrate symptoms consistent with mercury poisoning. The board has long been criticized by Fobister and others as being inadequate. The criteria for payments are too restrictive and the amounts too low, they have said.

In a statement sent to the provincial and federal governments Wednesday, the family said: “We call on you to admit at long last that Steve Fobister Sr. lived with mercury poisoning and died from mercury poisoning. ... (Steve) was forced to fight for four decades for mercury justice in the face of denial, delay, and discrimination.”

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When the Star visited him in 2016, Fobister attributed his hand weakness, slurred speech and difficulty swallowing to mercury poisoning. He said he got $250 per month. “A lot of people felt that I should have got the max” of $800.

“(Doctors) tell me that I have ALS (Lou Gehrig’s disease). I also have mercury poisoning. I’m also a diabetic,” he said. “It’s been hard living.”

Former Grassy Narrows leader Steve Fobister died on October 11, 2018. Fobister suffered from a degenerative neurological disorder likely caused by mercury poisoning on the First Nation.

In the living room of his small house, Fobister, his body stooped and inert, looked out the window.

“You look at the lake. It looks good, it looks clean, the fish look all right. How to believe that something like that could turn against you?”

He seemed weary of fighting.

“Look at me. I’m a sick old man. ... My community is sick. ... We’ve done this for 40 years and nothing has changed. My life is gone. It’s been destroyed. I hope the future generation can have a better life than what I had.”

Fobister never stopped advocating for a better future for his people, though, telling a friend last fall that a healthcare facility on reserve “could be a beginning. ...I think it is time that we should try to look after each other.”

Spurred in part by Fobister’s brief hunger strike, the disability board underwent a sweeping review. This led to the announcement this year that the province will retroactively index payments to inflation.

There have been other developments.

Recent research found eating fish with higher levels of mercury may be linked to a higher risk of amyotrophic lateral sclerosis (ALS), though the ALS Association notes that the same finding has not been made across all studies.

And after the Star and scientists revealed that fish downstream near Grassy Narrows remain the most contaminated in the province and that there is mercury-contaminated soil and river sediment at or near the site of the old mill, the province committed $85 million to clean up the river. Then the federal government pledged to help build the care home that will help some of the sickest residents.

“Steve leaves behind him a legacy of powerful advocacy and courage. He was a testament not only to his community, Treaty 3 and the Anishinabe people of northern Ontario, but he set a standard for leadership for others to follow,” new Ontario Indigenous affairs minister Greg Rickford said.

And on Wednesday federal Indigenous services minister Jane Philpott reaffirmed her government’s commitment to help build the home. She said money has already been provided for planning and design. The facility could include palliative care, physiotherapy, counselling and traditional healing.

About 150 people gathered for Fobister’s funeral service, the room smelling of sage and cedar. Elders closed the ceremony with an Anishinabe version of the Travelling Song played on a hand drum.

Fobister was wrapped in a white blanket and then a black one, each adorned with Indigenous designs, and then buried. Family members were then told to walk to their vehicles and not look back.