April 23-29 marks the National Organ and Tissue Donation Awareness week to raise public understanding of the importance of organ donation. We acknowledge the thousands of patients in need of a transplant and those who have died waiting. Canadians are reminded to register their intent to donate and to discuss their wishes with family and friends. Visit organtissuedonation.ca to find out how to become an organ donor where you live.
Gaylene Eagle Speaker’s Story
By Kelsey No Runner
Powwow has been the first love for Gaylene Eagle Speaker for as long as she could remember. She started dancing fancy shawl at three years old, and throughout her life, she has travelled across Canada and the United States to attend powwows with her family.
Throughout her diagnosis with kidney disease, powwow music and drumming has pulled her out of the darkest times in her life.
“When I don’t feel well, if I had a bad run or aches and pains from dialysis, I put on my earphones and I play my powwow music really loud,” says Eagle Speaker. “It brings me back to when I used to dance, travel, and win. And reminds me of all the different friends I made.”
“I start daydreaming about seeing myself dancing again.”
In 2011, Gaylene started to notice differences in her health. Initially, she attributed swelling in her legs and high blood pressure to her busy lifestyle.
On Friday June 29, 2014, she was rushed to Foothills hospital from her job at Siksika High School. Two days later, she received surgery for a hemodialysis access and began dialysis treatment for kidney disease.
According to the Kidney Foundation of Canada, kidney disease encompasses a variety of conditions and disorders that affect the kidneys. Kidney disease attacks the filtering units of the kidneys—the nephrons—and damage their ability to eliminate wastes and excess fluids. Kidney disease can range from mild to severe and in some cases, lead to kidney failure.
“When I was first diagnosed with kidney disease, the doctors told me I only had 15 percent kidney function. We were shocked they couldn’t find the reason why I developed kidney disease, and they told me that my kidneys were too shrunk to test them.”
“Kidney disease is silent. There was no history in my family other than my late uncle Mervin, but he never developed kidney disease till later in life.”
Gaylene says when she first got sick, she went through depression and anger. While kidney disease is an individual diagnosis, it became a collective responsibility for her family.
“As a parent you don’t want your children to be sick and it was hard for my mom and dad. We went through all that emotional part together, but it was my dad who reminded me, that my son, husband and family were all there to help.”
Kidney disease has a significant impact on a person’s lifestyle, and she had to be extra cautious in managing her food and water intake. Luckily, the Eagle Speaker family joined Gaylene in adopting a healthier outlook.
“My whole family started to eat differently because of me, and healthier choices were made as a family,” says Gaylene. “It made all of us look at heart health, blood pressure and sodium intake. Even though it was something not good that hit our family—me especially— it brought out some positive parts: not to take life or each other for granted.”
Since 2014, Gaylene and her family have been travelling back and forth between Siksika Nation and Calgary three times a week for almost nine years for dialysis treatment. She estimates that her and husband Darrin have gone through seven vehicles in the process.
“I start my treatment at 7:00 in the morning and I’m done by 11:00. There are days when you worry about a vehicle and making sure you have gas. Nobody sees that part. There’s a lot of people on this reserve that struggle financially, emotionally, and there’s a lot of elders that are dealing with this. The Edmonton office gives gas vouchers to go, but you still need money for lunch, and little unexpected thing that come along including parking passes.”
If you know Gaylene, you know unconditional humility and kindness. Her outlook on life continues to help her through her battle.
“I could easily be down and out but that’s not going to get me anywhere. I’m going to beat this kidney disease, and I’m going to get a transplant— I’m going to live a better life in the future.”
She and other Siksika Nation members with kidney disease are hoping to plan a Kidney March to raise awareness and donations can go towards funding for dialysis machines on reserve
“Imagine how easier it would be for a lot of people who don’t have to travel to Calgary for treatment— even two or three dialysis machines would help. We need to promote kidney awareness. We need to help because there is still going to be people in the future who are going to get sick with this. Something needs to be in place for them.”
Thanks to the support of her family and friends, Gaylene continues to manage her kidney disease and looks forward to the day she receives a call for a transplant.
“I used to always say it’s been a struggle but I don’t use that word anymore. This is just what the creator has planned for me. In the future I’ll figure out why, but right now I just got to do the work.”
Gaylene would like to thank the following people for supporting her through her journey:
“These individuals have pulled me through my trials with fighting kidney disease and have never hesitated to be there for me.” – Gaylene Eagle Speaker