NUNAVUT - Family members who are searching for the graves of loved ones taken south for tuberculosis treatment are mostly on their own. Information is picked up here and there, wherever they can find one piece of the puzzle that will lead to the next. It's an emotional ordeal, with the financial cost incurred by mourning family members.
Between 300 and 350 Inuit were sent to the Mountain Sanatorium in Hamilton, Ont. for treatment, including Sheba Pikuyak and Joanasie Akumalik's grandfather Pauloosie Akumalik.
"In 1957, (he) was sent off to Hamilton for TB, and he never returned home," Pikuyak said.
"His children became orphans and the youngest of the siblings, the late Elijah Percy Pikuyak (my father) never saw his dad again. In the 1980s Percy decided to put closure to his late dad's death. He went to Hamilton and visited cemeteries and spoke with funeral directors."
Pikuyak, of Hall Beach, says her father, who had limited English, found the gravesite, though there is very little detail of his search. What is known with certainty is the visit was part of his healing.
"He believed that in order to help others, he must heal first. He later became a counsellor helping with the youth and adults," said Pikuyak.
"This was all on his own expense. He paid for travel and accommodation all on his own."
Then in 2005, his brother Mucktar Akumalik, of Arctic Bay, also wanted to visit the gravesite. Joanasie Akumalik was living in Ottawa at the time, and took his father and uncle to Hamilton. Finding the grave again took some detective work and wrong turns – but they found it.
"My uncle Percy, being a lay minister with the Anglican church, wanted to read burial services from the Bible. So he did. We said prayers," said Akumalik.
Akumalik, and his father and uncle, bore the brunt of the costs of their trip.
"They paid for their own expenses, own airfare, accommodations, family members donated Aeroplan miles, and they used what little savings they had and booked their tickets," said Pikuyak.
"It was only in Iqaluit when the two men were overnighting, and Mucktar was invited over for a Qikiqtani Inuit Association banquet, that they gave him $1000 when they learned that he was going to go to Hamilton to go see his father's grave."
The three, who had brought tea and bannock to the grave, drank and ate in Pauloosie's memory.
"I told them, 'It's there. We found it. Your father's grave.' That's when they started to cry, started talking about who he was, how he was, how they missed him. It was amazing … there were a lot of geese around us. It made the visit more serene, which was beautiful."
Pikuyak says the search continues for her maternal grandmother.
"One among many Inuit who have never been found. Many Inuit don't know where their loved ones are as they never came home," she said.
Where to look?
As a young girl, Quluaq Pilakapsi hoped her mother Emily Epiksaut would return home to Coral Harbour. Then she hoped she would one day find her grave. The last time she saw her mother was through the bubble window of a small plane. She has no photos.
"I remember her telling me she went to Churchill for medical (treatment) and she would look in the cemetery, looking for her mother's name," said daughter Brenda Osmond.
"But she never found anything."
Then, one recent Christmas, a fateful trip took place.
"We took my mum to Brandon for Christmas, to my in-laws, and when we were driving by the old sanatorium my husband said, 'That's the old Brandon sanatorium right there,'" said Osmond.
Pilakapsi said: "I think my mum was there."
But she also mentioned Clearwater Lake and Ninette sanatoriums. And so Osmond's search began, first online, then with a spatter of e-mails to churches and cemetery caretakers in Brandon, The Pas and Ninette.
"I e-mailed everyone. I called the hospitals, the Lung Association in Winnipeg," said Osmond.
The Coral Harbour health centre had no record of Epiksaut, neither did Vital Statistics in Rankin. Finally she tried NWT Vital Statistics. It turns out the authorities of the day spelled her name Eepikshoot.
"They had a list of the E-numbers with the correct (for then) spelling of her name and date of birth. That's how I applied for her death certificate in Manitoba," said Osmond.
In the late '80s and early '90s, the Government of the Northwest Territories (GNWT) ran the short-lived Medical Patient Search Project. The program no longer exists, but the GNWT still accepts requests for help.
"If a request was processed, we would review our records and provide what information was possible under ATIPP (the Access to Information and Protection of Privacy Act)," said manager of communications with the Department of Health Damien Healy, who noted while his government retains all historical records prior to 1999, "most of the deaths of these persons did not occur in the NWT, the NWT would not have death records."
"If we received a request, we would do our best to help," he said.
The Government of Nunavut's Department of Health says it encourages anyone looking for information to contact its office of patient relations.
"The patient relations office will work with the client on a case-by-case basis depending on their case needs. They may inquire with an Inuit organization should it be appropriate or utilize other methods," said acting manager of communications Nadine Purdy.
'Let's find them'
A federal program to help families with their searches has been in the works since 2008. A working group called Nanilavut, or Let's Find Them, was established in 2010.
Indigenous and Northern Affairs Canada (INAC) chairs the group, with membership from Nunavut Tunngavik Inc. (NTI), Makivik Corp., Inuvialuit Regional Corp., the Nunatsiavut Government, Inuit Tapiriit Kanatami (ITK), Pauktuutit, Kivalliq Inuit Association, Kitikmeot Inuit Association, Qikiqtani Inuit Association, Government of Nunavut, Government of Northwest Territories and Health Canada.
"Since 2010, INAC has undertaken a collaborative approach with Inuit partners through the Nanilavut Working Group. INAC is continuing to work with partners on finalizing the database and determining next-steps," stated INAC spokesperson Stephanie Palma via e-mail.
"The Nanilavut Working Group determined the research priorities with the ultimate goal of locating the burial locations of Inuit who passed away while undergoing medical treatment during the tuberculosis epidemic of the 1940s-1960s."
Palma said comprehensive research has been conducted at Library and Archives of Canada, departmental records, provincial archives, religious archives, key informants and publications, as well as outreach to various cemeteries across Canada. Research conducted by working-group members was also included in the findings.
Palma could not say if funding for families would be part of the program.
"As the new Inuit-Crown relationship moves forward, the Government of Canada is committed to take action to address painful memories of the past, including relocations and the treatment of Inuit during the tuberculosis epidemic of the 1940s-60s."
Nunavut Tunngavik Inc. declined to comment on details.
"Negotiations are still happening and NTI would prefer not to comment until things are finalized and proper supports are put in place. This is a difficult subject for many families."
ITK also chose not to participate in this story.
'We picked a grave'
Osmond did receive Epiksaut's death certificate. She learned her grandmother had died at the approximate age of 33, that she'd been treated at the Brandon Sanatorium, and that she was buried at the Oak Indian Reservation Cemetery about 30 minutes from Brandon.
"She was there. She passed away there. They didn't send her body back. They brought it to an Indian reservation," said Osmond.
"We planned to take my mum – I think it was nine months later. My mum wanted to go right away, but we had no money. We needed to save and plan," said Osmond.
Another bit of information came to Osmond.
"One of my friends has a book by a nurse who went to Coral Harbour to work. She talks about the first patient she sent out for TB – which was my grandmother. She had just received news from Brandon Sanatorium that the first person she sent out passed away. She had to go tell my grandpa, with someone from the community, that his wife had passed away," said Osmond.
The words describe Osmond's mother's reaction – she is Koolooah in the nurse's memoir.
Osmond and her mother read the passage, and Pilakapsi said, "Yes – I remember crying a lot because I wanted my mum."
Last year, when Pilakapsi was 72, Osmond and other family members took her to Winnipeg, driving to Brandon, then Griswold.
"We asked at the band office. But they don't have any records of who is in the cemetery," said Osmond.
As Osmond describes it, the cemetery had two sections – the right side was Anglican and the left side was Catholic. The graves of sanatorium patients were separated by a gap, in the front area.
The family was taken aback – most of the graves had no names, only dates.
"We never found it," said Osmond.
"We were walking around looking for the grave, looking at all the graves … I asked, 'What are we going to do now?' My mum said, 'We're going to pick a grave. We're going to put the flowers there.'"
Pilakapsi set the flowers down by a cross and said what she wanted to say to the mother she'd lost so long ago.
"One of my sisters that came with us really believes the grave we picked is her grave. Because … when we got there it was quite windy. It was overcast. When we picked the grave, it got sunny for a few minutes. And the wind died down."