About a year ago, between dialysis treatments, Tanya Denis stood in an airplane hurtling thousands of feet above St. Jerome. Her nephew was nervous, talking a mile a minute. But not Tanya.
“I didn’t get nervous until they opened up the plane door,” she said. The spring air the plane broke felt cool. She asked what she’d gotten herself into. But she figured she had nothing to lose.
People are surprised when she tells them she went skydiving, considering how sick she was. Some told her she must have a death wish, but she doesn’t see it that way – it was life-affirming.
“That’s just who I am, a thrill seeker,” she said. “Adrenaline junkie.”
It was breathtaking, she said, an experience she can’t explain.
But it couldn’t have been easy. She was receiving dialysis treatments three times a week, tethered to a machine that would cycle her blood for four hours, sifting out waste because her kidneys could no longer do the job.
The gruelling regimen left the Kanehsata’kehró:non with little energy, her off days mostly used to rest. She found it hard to keep up with her beloved grandchildren, young and full of energy.
She searched for a donor ever since being rushed to the hospital on Christmas Day in 2019, her kidneys failing her. “They put a catheter in so I could do dialysis right away,” she said.
“After that I had no life, meaning I couldn’t go anywhere. Everything was taken from me.”
Tanya, now 54, has had Type 1 diabetes all her life, having been diagnosed at only four years old. She was keenly aware of the potential complications, not only as a patient but as a diabetes prevention worker – a role she had to give up when her kidneys stopped working.
“I lost my job and then I lost the ability to work out because I had no energy because I was sick all the time,” she said. “These are the things that people just take for granted. You’re stuck to a machine for four hours knowing if you didn’t come in, that’s it for you.”
Her hopes were stoked from time to time, but the few people who got tested to be her organ donor either weren’t a match or were rejected for health reasons. Her experience reflects what research shows – that while Onkwehón:we are in disproportionate need of kidney transplants, they receive the organs from live donors at a lower rate.
Then in the first week of December, she got a call from the Royal Victoria Hospital. “Come in right away,” they said. “Don’t waste any time.” She was so happy, she said, that she felt high. But the hospital discovered an issue with the kidney – in Tanya’s words, it was sick – and the doctors were worried that, compounded with her diabetes, it was too risky.
“That was a big disappointment,” she said.
Even though the hospital assured her she was still at the top of the list for a kidney, when they called her again a couple weeks later, she didn’t get her hopes up. “I wasn’t excited,” she said. “I wasn’t thinking negatively, but I wasn’t going to go through that disappointment again.”
* * *
For much of the past two years, Kahnawa’kehró:non Tammy Whitebean was doing all she could to give her kidney to Tanya, a woman she has never met in person. She spent a year-and-a-half doing tests while Tanya languished.
“The simple things we take for granted, she was longing for,” said Whitebean. She had been inspired by news reports about Tanya, who had been reaching out to the media in an effort to connect with a donor who might want to help her. The story reminded Whitebean of her father, who died in his 50s because of diabetes.
She couldn’t believe it when a doctor told her she wouldn’t be able to help, that she had been rejected out of concern for her own health.
“The tissue, everything matched,” said Whitebean. “He said, ‘well, we’re a little concerned with your age,’ because I was 53, and I was a smoker. And I said yeah, but there’s nothing wrong with my kidneys.”
She felt angry, robbed of her autonomy, that medical professionals were making the decision on her behalf.
“I was really, really upset. I didn’t want it to be like a racist term or anything, but I did say that to him,” she said. “‘Oh, is it because she’s Native?’ That’s how mad I was. Every test they’ve done, I passed it. No problems. No infections. No high blood pressure. I have nothing.”
She had been messaging with Tanya all along, updating her on the results of her tests as time went on. Now she had to tell her that she wouldn’t be able to give her the kidney she desperately needed.
“I cannot imagine how she felt when I had to message her to tell her that,” said Whitebean.
“I felt like shit. I was angry. I could not believe going through all that and then to be told no. That was a big letdown. That was horrible.”
* * *
Tanya’s niece, Naomi Denis, believes some community members were afraid to give up a kidney because of a fear they could be in the same situation one day.
“The likelihood of somebody becoming diabetic and eventually losing kidney function is a real f*cking reality for a lot of us,” she said.
“You’re lucky if you can borrow 20 bucks nowadays, let alone give me a kidney. It’s a lot. It’s a hard ask.”
It was difficult for Naomi to watch as her vivacious aunt Tanya struggled through an endless cycle of dialysis treatments. Tanya is her father’s sister, and Naomi’s mother’s sister went through something similar, so the struggle was already familiar to her.
“When I finally heard that she got the call to prepare a bag, I was really ecstatic,” said Naomi. “I was choked up. It brought tears to my eyes because I knew it would only be a matter of time now before she got a kidney.”
Just last year, Naomi and Tanya went on a helicopter together. But Naomi’s free-spirited aunt could not go on a trip, let alone do her usual activities. “To see her not be able to barely walk, let alone ride a bike, it’s gut-wrenching,” Naomi said.
“We used to bike ride from here to fricking LaSalle and back. Now she’s lucky if she bikes around town and back home. To go from one extreme to the other, it’s like a normal person losing their sense or losing a limb, almost, to the point where it’s life altering.”
* * *
At Royal Victoria Hospital, someone asked Tanya if she was nervous. “No, I’m not nervous,” she said. They prepped her for surgery. Then they told her she was going to the operating room. But nothing was sinking in.
It didn’t hit her until she looked up from the operating table and saw the surgeon. “I was like, ‘Oh my god. Here we go.’” That’s the last thing she remembers.
Four hours later, her surgery was over. She had a kidney; she was told it came from a young person, but she doesn’t know anything more than that.
She felt tender, but not sore. She didn’t take any pain medication. She got out of bed the next day – it was New Year’s Day.
“I could finally urinate after five years,” Tanya said. “A lot of people take that for granted. I was telling my brother I can’t wait to go to the bathroom again.”
Tanya’s biggest wish has been to enjoy her grandchildren, Kashdyn and Carter, without the burden of dialysis.
“I’m going to be able to play with them, do things with them, go out with them, whereas I couldn’t do that,” Tanya said.
“I didn’t take my life for granted and I still don’t. I couldn’t say thank you enough to the team. I think even the surgeon got sick of me saying thank you so much.
“I’m happy, but I think when I get home, it’s going to really, really sink in. My life now is going to be totally different.”
This article was originally published in print on January 12, in issue 33.02 of The Eastern Door.
Marcus is managing editor of The Eastern Door, where he has been reporting since 2021 on issues that matter to Kahnawake and Kanesatake. He was previously editor-in-chief of The Link and a contributing editor at Our Canada magazine.