MINAMATA, Kumamoto Prefecture–Jitsuko Tanaka lies silently on the futon bedding in her home with a view of Minamata Bay, where a factory of chemical company Chisso Corp. discharged wastewater containing methyl mercury long ago, poisoning her and her family.

The 59-year-old woman, wearing yellow pajamas with a floral pattern, shifts her eyes occasionally as if seeing something. Then she suffers a sudden attack of cramps and begins shaking.

“She is old enough to have fallen in love, married and had grandchildren,” said Yoshio Shimoda, her 65-year-old brother-in-law who cares for her. “She was deprived of all the prime years of her life.”

On May 1, 57 years ago, the first case of mercury poisoning, later known as Minamata disease, was reported to local authorities here as the “ailment of an unknown cause” afflicting Tanaka.

She developed symptoms of the neurological syndrome, which include numbness, loss of peripheral vision and other symptoms, when she was only 2 years and 11 months. The last words the little girl uttered were: “I cannot put on my shoes.”

The hospital that Tanaka was admitted to reported her case to the local public health-care center on May 1, 1956, which later became known as the day Minamata disease was first officially confirmed.

Her suffering was captured in the early 1970s by W. Eugene Smith (1918-1978), a famed American photojournalist, who documented the human toll caused by the nation’s most heinous case of industrial pollution.

Smith shocked the world with his vivid photo collection of the sufferings of patients in Minamata afflicted with the disease.

A Supreme Court ruling on April 16 this year underscored the continuing trials of the patients who developed the disease by eating contaminated fish and shellfish from Minamata Bay.

The top court questioned the central government’s rigid standards for certifying patients of Minamata disease, paving the way for far more victims to be potentially eligible for redress. Although tens of thousands of people have applied for compensation, only about 3,000 have been certified as suffering from the disease, entitling them to between 15 million and 18 million yen ($153,600 and $184,360) from Chisso.

Shimoda welcomed the recent court decision as a step to ease the plight of patients like his sister-in-law, who has been certified as suffering from Minamata disease.

“The standards should be reviewed,” he said. “But the sufferings of the patients will never be over even if they are awarded official recognition.”

Although Shimoda had declined interview requests on behalf of Tanaka for years, he said he changed his mind after hearing what Masazumi Harada, a well-known doctor and activist on behalf of Minamata patients, said repeatedly before he passed away last year.

Harada, who is widely credited for bringing the disease to public awareness after conducting extensive research of patients, stressed, “Never forget Jitsuko, our starting line.”

“We see a need for many people to know that she is trying very hard to survive,” Shimoda said, explaining why he agreed to be interviewed.

When he asked Tanaka if she had something to say, she just stared back. Unable to speak and move, she is bedridden. When she suffers bouts of severe attacks, she almost stands and shakes violently, so she has to be restrained.

The only time she has left the house in more than 10 years is when she was checked into a hospital for treatment.

Tanaka was born to a family of a ship carpenter.

Her older sister, Shizuko, suddenly became unable to walk in April 1956 when she was 5.

Shortly thereafter, Tanaka also developed symptoms.

Shizuko died in 1959.

After her parents, certified Minamata disease patients, died in 1987, Tanaka’s condition deteriorated sharply and she became confined to her bed.

Ever since, the oldest daughter of the family, 69, and Shimoda have cared for her around the clock.

With a spoon, they give her rice porridge and stewed vegetables at mealtime.

Tanaka has no set daily rhythm: she sleeps only for two to three hours on some days, but at other times, does not sleep at all even for two full days.

The couple gives her tranquilizers three times a day and a sleeping pill after dinner to help her rest.

Looking after Tanaka has taken a hard physical toll on her caregivers.

Tanaka’s sister was stricken with a cerebral hemorrhage after caring for her when she suffered severe attacks for a week in 2009. Today, the sister is partially paralyzed and relies on a wheelchair.

The following year, Shimoda was hospitalized to have surgery for an aneurysm.

After that local officials arranged for a nursing assistant to help ease the burden of the two. But Shimoda needs to be constantly by his sister-in-law’s bedside in case she has a seizure.

“The thought has occurred to me that I should kill myself after killing her,” Shimoda admitted, referring to the enormous care-giving burden imposed on his family.

He complained about their dire straits when an official from the Environment Ministry visited them to check on Tanaka last month.

“We are doing all we can do under the existing system, but we will listen to you more about your needs,” Shimoda quoted the official as saying.

But the official was transferred to a different position this month in a periodic reshuffling of government personnel.

“Although patients will be patients all their lives, public servants are reshuffled very often,” he said.

Shimoda said no representative of Chisso has ever come to see her.

Kimiyo Ito, who has helped Minamata disease patients for more than 40 years as a member of a support group, calls for an overhaul of the support system for caregivers.

“As patients and their families age, we need to improve the support system,” she said.

A memorial service was held for people who died of the disease in Minamata on May 1. Two days later, Tanaka will turn 60.