Eva Markvoort’s world measures 15 feet by 22 feet and you can walk across it in about five steps.
It’s her parent’s living room, converted to a bedroom because that way she doesn’t have to climb stairs, and the bathroom and kitchen are just a few feet away. Curtains separate her world from the dining room and block people outside from peering in.
The walls are Eva’s scrapbook—a colourful mosaic of posters, cards and letters, many hand-made, with images like sunsets, kittens and flowers.
They come from people Eva has never met.
But they know her.
They know the 25-year-old with model looks and Kool-Aid red hair has cystic fibrosis, that she lives in this small room because she has just 16 per cent lung capacity, that every time she dresses it’s a lung-draining marathon, that she hates “the fucking tubes” that feed her life-preserving oxygen and that she sees a “bright and shiny new life” in the future with “big, healthy” new lungs.
People from as far away as England and Italy know the New Westminster woman because her world is more than the improvised 330-square-foot bedroom she now inhabits.
Her blog reaches and touches thousands of people, who write her, and send her cards and gifts.
Each piece of mail, she says, brings hope.
“Most of the messages are just amazing. If you were to receive just one of these cards and realize the intent behind it… it’s so wonderful. To have received so many of them is so overwhelming in the best way possible.”
Eva is waiting for her second, double-lung transplant. The lungs from her first transplant are dying inside her chest, what’s called chronic rejection.
Her progress has been charted on her blog, which she started four years ago as a way to reach out to others with cystic fibrosis, learn more about the disease and find out how others coped.
But it went beyond that.
“People want to connect, they want to reach out and touch something, they want to help,” says Eva.
“Going through this has taught me the inherent good in humanity. I just feel so lucky to have (such a response).”
Throughout her blogging, she’s adopted one central rule: be honest.
“I don’t sugarcoat things. I have my good lung days and I have my bad lung days,” says Eva, a former Miss New Westminster.
The blog has become much more than just an outlet for the energetic woman, it’s arguably changing the lives of others.
“I have tons of letters from people saying, ‘I’ve registered to be an organ donor because of you,’” says Eva, a smile peeking from underneath her oxygen tubes.
“That’s huge. I could have saved someone’s life today because of that.”
One of Eva’s favourite letters is from an assistant principal in Los Angeles County. Many of her students are gang members, pregnant, homeless or involved in crime or drugs.
“These are students society has determined are worthless,” the principal writes.
Eva’s blog was introduced to the students in various classes and they were captivated by it. Unmotivated students began to become more empathetic and learn about things like CF and transplants.
“So the next time you start thinking about the impact you have had on the world, know that somewhere in the ’hood—Los Angeles County—a kid is wishing you well,” concludes the letter.
“Isn’t that so cool,” says Eva. “I could never dream of reaching those kids otherwise.”
The letter has an added weight for Eva because it’s been her dream to work with children, something now on hold.
“But by stepping back, without even knowing, I’ve had an even greater impact than I could have imagined. So it makes me have a little bit more faith in the world. And maybe… this isn’t such a bad place to be.”
Eva waited nine months for her first transplant, spending weeks in the hospital as her body gradually weakened. Her new lungs arrived in the fall of 2007, the tragic legacy of a young donor. They lasted two years before her body started to reject them.
In that time she embraced life, as she always does, even competing with a dragon boat team of fellow organ recipients.
But now the arduous wait for a second transplant has begun.
Ask what keeps her going, and she says “hope.”
“Because for me, the transplant is hope. If I get the transplant now or later, it allows me to have hope that I will get better.”