Countless known diseases exist within our society, and we try desperately to cure each one. Hope fades as the lives of those infected are cut short and progress seems crawling at best. To a healthy person, it is hard to keep up with the different forms of disease, and it’s even harder to imagine what it must be like having one.
Imagine this: You are at Everest base camp, 17,000 feet above sea level. Climbers train a lifetime to be able to acclimatize to the 60 per cent reduction in oxygen. As you make your way to the starting point, you struggle for breath.
At 31, Nicki Perkins lives with 40 per cent lung capacity and struggles daily to breathe. She has cystic fibrosis, a fatal disease attacking the respiratory and digestive systems, eating away at the lungs while blocking the production of enzymes essential for normal digestion. She takes over 45 pills a day and cannot conquer a flight of stairs.
"You feel like you’re drowning," explains Nicki, who is finishing her second degree, is happily married and has recently retired after five years experience as University of Calgary Varsity Events Coordinator–all in spite of her illness.
When she was diagnosed with cystic fibrosis at the age of four, her doctors said not to bother signing her up for kindergarten. In the early stages of CF research in the 1960s, very little was known about the genetic disease, and the median age of survival was four. Since then, it has risen to 35.6.
From your oxygen-depleted position at base camp, imagine being allowed to climb Everest but knowing that you will not make it past a certain fatal passage that claims every life that crosses the line. Imagine having no choice but to climb the ill-fated summit.
As those infected struggle to come to terms with the disease, researchers struggle to decipher it. The Canadian Cystic Fibrosis Foundation was established in 1960. A charity program, instituted by volunteers, CCFF scientists were the first to crack the genetic code. Naturally then, any high-caliber research has implications for the whole scientific community.
When Nicki was first diagnosed in 1976, there were very few CF clinics available. Now there are 37 specific centres in Canada. With time, CF research has been able to specify enzymes blocked by mucus in the pancreas, and have in turn developed antibiotics to help digest food.
Imagine having to get up at least an hour earlier than anyone else, just to prepare your body for the struggle of maintaining its daily inner functioning–from regimented exercises to pill intake to mucus excretion. Imagine not being able to enjoy the savory food cooked up on a festive holiday.
"I’ve lost my sense of smell," says Perkins. "I’m not hungry."
When you need a feeding tube to ensure your body gets 4000 calories daily, it is no wonder eating loses its appeal.
In spite of new technology and scientific advancements, those infected still have to face the power of biology, disease and the inevitability of premature death.
"There isn’t going to be a cure," she says frankly. "It’s just too beautiful of a thing to be true."
In the meantime, Nicki lives life with eyes wide open, putting one foot firmly in front of the other.
"I’m not a quitter," she affirms.
Until the age of 20, Perkins’ symptoms were unrecognizable. As long as she took her enzymes daily, she was a normal kid. She excelled at everything she did, from team captain to academic to socialite. Nicki didn’t feel so different from other kids her age.
"I needed to prove myself," she confessed, like all teenagers who are trying to find their place.
It’s funny how most of us at that age never thought twice that our survival could be at stake.
When Nicki left her hometown in Saskatchewan to come to the U of C, she went from Queen Bee to a student ID. Eager to become more than just a number, she wanted to live, to dive into the prime of her life and into the full college experience—the same experience that can easily wipe out the toughest of eager youth.
Like so many students, Nicki worked a full-time job on top of her course load. True to form, university life wore her out.
"I was making bad choices, but I didn’t have enough energy to make good ones," she admits.
Nicki wasn’t fortunate enough to be able to cope physically with the youthful wear and tear. Her body exhausted, she crashed on a fast downward spiral. Like a dormant being shaken from sleep, cystic fibrosis finally caught up with her.
"Cognitively, [the disease] never really sunk in until I got sick," she confessed of the illness that spanned her life from birth.
As the effects of CF began to show, Nicki’s path began to steer sharply away from the norm. She started to stand out, and feel completely alienated.
"I would do anything I could to suppress the cough," she recalls.
For her friends, it wasn’t until it was visibly obvious Nicki was fatally ill that they even learned of her disease. The coughing fits became unbearable, and Nicki was losing weight at an alarming rate.
"It was really hard for me to accept help," she admitted. "To have someone caring for you at 23–it’s devastating."
Cystic fibrosis isn’t a disease that goes away, it can only get worse. Within a few years of her crash, Nicki had lost 60 per cent of her lung capacity, and there was talk of a lung transplant, something Nicki is adamantly against.
"I was 76 pounds six weeks before my wedding," she says, recalling the rough time. "A treat size candy would fill me up."
That was in 1998.
Science and research persist, and a new pill is claiming to replenish up to 10 per cent of lung capacity for those with CF.
In the meantime, Nicki is monitoring her body for the effects of the new drug, hoping it may offer relief.
In the meantime, she remains happily married and involved with teaching others about the disease, and learning herself.
Research continues at the CCFA.
In the meantime, the future looks that much brighter for those born with CF.
In the meantime, we know just that much more of the human condition.
Mon., Sept. 26 is Shinerama Day, an annual student event to raise money for the Canadian Cystic Fibrosis Foundation.