For Stella Keast, comfort comes in the form of a dress.
Keast, who is critically ill with auto-immune hepatitis, dons the traditional Ojibway “jingle” costume whenever she can to take part in pow-wows and other cultural events that lift her spirits.
Since her illness, these customs have taken on a heightened meaning.
“I’d heard before that the jingle dress is healing,” Keast said Monday, seated in a wheelchair in La Verendrye General Hospital here, where she is recovering from a broken pelvis that also is a result of the disease.
“I understand that now because I’ve felt it.”
The mother of three grown children has been suffering from the severe genetic disorder since 1999. The illness has weakened her immune system and ravaged her liver. In January, she was placed on a waiting list for a liver transplant.
Unfortunately, that list is roughly three years long.
Keast said she decided to share her story as a way of reaching out to anyone else who is suffering from the same disease, or any other serious illness.
“Maybe somebody else who has this kind of illness wants someone to talk to so that they’re not suffering alone,” she reasoned.
There’s another reason why Keast decided to go public although she’s more hesitant to articulate it. “Maybe because of this, someone will fill out their donor card,” she noted.
Keast’s ordeal began three years ago with what she believed at the time was a minor bacterial infection. She later learned auto-immune hepatitis masks other illnesses, making them difficult for doctors to detect.
It wasn’t until she suddenly collapsed one day that doctors discovered the severity of her condition. Keast said doctors don’t know what causes the illness, which is non-contagious but carries a grim prognosis.
“At the beginning, the doctors told me that I could go at any time,” Keast recalled. “The average length of time that they tell people is 10 years.”
That diagnosis prompted Keast and her husband, Eric, to move from Wawa to Fort Frances, where Keast has family, and where there are reasonable medical facilities close by.
In the meantime, Keast said the illness has altered her life in a profound way. “I have to be so careful. I have to avoid anyone who’s coughing. We can’t really travel anywhere anymore,” she said.
Because the list for a cadaveric donor is so long, Keast’s doctors also are considering using a live donor to donate a part of their liver.
But this alternative is equally problematic, Keast said, because it’s difficult to find someone with matching blood type who also is in perfect health-the only kind of donor doctors consider using for this kind of procedure.
Besides, Keast noted, “It’s a scary thought for people. The person giving the organ is also at risk during the operation, and I wouldn’t want to put anyone at risk.”
Doctors considered using Keast’s husband, Eric, but found he has other health problems that would make the operation too risky for him at the moment. The couple’s children currently are being tested to determine if they’re viable donors.
As she awaits a transplant of one kind or another, Keast said she lives day-to-day and tries to maintain a positive outlook.
“My initial reaction was ‘Why me, Lord, what did I do?’ But now I don’t say that any more. I deal with it,” she said. “I started to accept it and I said well, I’m going to fight this.”
Still, some days are better than others.
“It’s hard on everyone,” she admitted, adding her husband of 32 years has been a tremendous support. “Now we really know the meaning of ‘in sickness and in health.’”
Particularly in the face of some of the painful procedures Keast has been through during her illness. Last winter, doctors elected to remove all of her teeth to prevent the risk of tooth and gum infections in preparation for an eventual transplant.
Because of her weakened immune system, Keast is at an increased risk for such infections.
Currently on steroids to keep the swelling in her liver down, Keast also has had to endure the many horrific side effects of the drug—including the thinning of her bones and skin.
A minor fall is what caused her to break her pelvis last week, landing her in the hospital for another few days.
Still, Keast hopes to be on her feet again soon so she can get back into that jingle dress.
“It’s as if you’re energized from somewhere when you wear it,” she reflected. “It’s amazing. It helps me with my mental well-being.”