Vancouver’s Eva Markvoort fearlessly exposes her life with cystic fibrosis and her quest for a double lung transplant.
65_REDROSES (Philip Lyall, Nimisha Mukerji, Canada). 71 minutes. May 7, 7:30 pm, Royal Cinema; repeats May 9, 2 pm, Royal Cinema and May 10, 9:15 pm, Bloor Cinema. Rating: NNNNN
Eva Markvoort is breathless, but that's a good thing.
"I'm in the middle of San Diego," she says excitedly over her cellphone, "sitting on the top bunk in a hostel. I haven't been able to take a vacation for a very, very long time, being so sick. When you're on the transplant list, you can't leave the city. And then there's the recovery process."
Markvoort's medical ordeal is documented - often in excruciating detail - in 65_RedRoses. Vancouver-based directors Philip Lyall and Nimisha Mukerji spent more than a year tracking her path to a life-saving double lung transplant.
What distinguishes this documentary from every other medical study is its wrenching intimacy. Lyall and Markvoort have known each other for years, and as a result the filmmakers were allowed to be present at moments when anyone else would have surely been pushed out of the room.
"Once she gives herself, she'll give everything," Lyall says from his Vancouver home. "She let us be anywhere, watch her anywhere. She knew that making this film, we'd have to shoot the hard moments in her life - if we censor it, if we don't get those really dark moments, then, you know, I don't think you get that payoff. You won't show the viewers what she's really going through. She understood that."
Isolated in her hospital room - cystic fibrosis patients aren't allowed to spend time together, for fear of sharing infections - Markvoort found distraction and comfort online, chatting with other young women living with the condition. (The film takes its title from Markvoort's screen name, a play on her childhood inability to pronounce "cystic fibrosis.")
"I was never an Internet person until I got really sick," she says. "When it came to the point of having to make decisions about my care that my doctors couldn't really answer, that's what led me to finding all these people online. My 55-year-old doctor can sit there and go, ‘You need a feeding tube.' Well, that's great, but how's the feeding tube going to look in a bikini? They may not think about that, but I do. I'm still 22 years old, I'm still interested in how the world sees me, as a young person, and that's integral to who I am as a person.
"You can call it shallow, or you can call it realistic, but I had these questions that my doctors couldn't answer: What does it feel like to have these procedures done? What long-term effects do they have on your friendships, your family, your relationships, deciding to get a double lung transplant? That's when I turned online and found these people, and started reading their histories and their blogs. It opened up an entirely new world of communication and people and experience. I'm just so glad for it. And now it's an important part of my life."
Lyall and Mukerji wound up including two of her online friends, Meg Moore and Kina Boyce, in their documentary.
"These girls are very intelligent," Lyall says, "and they wanted to tell their stories. It was harder with Meg, because of her drug problems and her family situation and all that, but literally we just showed up at their door and started shooting, and they let us follow them."
Markvoort was only 23 when they started filming, and her lungs were so badly damaged by CF that there was some question whether she'd survive the procedure - if she even lived long enough for suitable lungs to become available. The waiting weighed on everyone, including the filmmakers.
Eva Markvoort says all the tubes stuck in her body were weighing her down.
"As soon as we started filming," Mukerji says, "it dawned on me that we were waiting with her. You can't leave, you can't travel, you can't go anywhere. So day by day, as we talked to her about the growing fear of what would happen if it didn't go off, it became a growing fear for us as well. As filmmakers, and then just also on a personal level, we were watching someone we know deteriorate over a period of time."
Obviously, things worked out. The camera even follows Eva into the operating room for the transplant, and stays with her through the harrowing post-surgical period.
I have to ask Markvoort how it feels to be talking about a project that leaves her so exposed - literally.
"That's so crazy!" she laughs - a big, barking laugh that would have left her winded two years ago. "But you know, the physical part of it has never bothered me. It's just my body. The part that's hard is knowing that people will see me at my weakest moments, or see me when I wasn't sure of myself, or see my family being upset about me. The emotional vulnerability, that's seeing my insides. That's the tougher part."
A year and a half after her transplant, Markvoort is fully recovered and living something very close to a normal life.
"I take about 65 pills a day," she says. "I see my doctor about once every two months. I am constantly monitoring my blood pressure, temperature, body weight - it's trading one disease for another. Now I'm someone who's gone through a major transplant, and that comes with its own risks. The medications are tough on your system; they have a lot of complications and issues. But compared to before? Sixty-five pills is nothing."
"Before, I was on tube feed, on oxygen, on home IV, you know - all those tubes, there were so many tubes I could feel them holding me down. The best day ever was when I came home from the hospital and actually got to go through my room and remove two full garbage bags of medical equipment, just take them out of my room. And I felt normal.
"There are small restrictions," she says. "I can't travel to Third World countries or swim in public pools. But God, the alternative? Okay! Great! Sure, no public pools. Awesome!"
Philip Lyall on how the project took shape:
Eva Markvoort on getting her family involved with the documentary:
Nimisha Mukerji on access:
Eva Markvoort on what she's feeling now: