As the ArtPrize competition in Grand Rapids wraps up this weekend, there's a particular exhibit in the halls of Boardwalk Condominiums that some may have missed. The exhibit looks like a classic photo montage -- pictures of flowers, animals, trees, all stacked in rows, one after another. But inside these photos is the stressful, yet hopeful journey of an 18-year-old Galesburg photographer named Madelaine Martin.
From the day she was born, Martin hasn’t had it easy. She was born with autism, which made it hard to even simply take in the world around her.
When I meet Madelaine, things seem to be even harder for her. She sits in a big chair. By her side hang several IV packets, sending nutrients through tubes into her body. Madelaine’s cells can’t absorb food, so these IV’s are her breakfast, lunch and dinner.
Despite all of this, though, she’s cheery. Witty, too, and a little sarcastic.
"I call my IV stuff my ball and chain," Martin says, laughing. "Cause it goes everywhere."
Madelaine needs all this to treat a disorder called mitochondrial disease – “mito,” for short. She and her brother were both diagnosed a few months apart in 2004.
Mito is a truly awful disease. Mitochondria are basically your cell’s factories, transforming food into the energy you need to do anything – eat, breathe, walk around. When you have mitochondrial disease, though, the mitochondria fail. Your body suddenly can’t get that energy. And now, instead of going to school, or even just going outside most days, Madelaine is stuck in her house.
"Mito is a very nasty horrible disease," Martin says. "It's something that no one should have to live with. Especially kids. I know that mito has made my brother and my life very hard. But we also just try to ignore it. We just, we live our life."
But a kind of amazing thing happened in the years after Martin was diagnosed. She started heading to the Cheff Therapeutic Riding Center in Augusta. While there, surrounded by neighing horses, Martin found out that animals seemed to want to get close to her.
"I started riding and just animals were something that I could do," Martin says. "Like I could get close. And I have always liked them. And been good with them."
Martin wasn’t just content with looking at them, though. When she turned 13, she picked up a camera and turned the lens at the animals and nature scenes around her.
Martin even headed to equestrian events and snapped thousands and thousands of photos of horses, seemingly flying through the air as they jumped hurdles. Her camera, she says, was her very own “animal magnet.”
"Animals, horses, especially, just trust me, I guess? I can go out in a field and the horse will, I don't even know it, and the horses don't go away," she says. "I think my autism is what makes it so I can. Like, analyzing things. Analyzing their body language."
More importantly for Martin, though, photography became the one place where her IV’s and her sore joints didn’t matter.
"I just forget about all the stuff that I'm attached to -- all my I.V. lines and my I.V. backpack -- when I'm out," she says. "But when I'm taking pictures of something I love and am happy, I can forget about it, and I feel like I have more energy than I really do."
Back inside, Martin pulls up a few of her favorite photos on her computer. They’re nature photos, but not the kind you expect, with mountains and rivers. They’re intimate. They focus on just one, tiny detail. A splash of a single raindrop, or the weathered wrinkles on an elephant’s face.
"And, you know, we see life as the big picture and the world around us as one big picture," says Madelaine's mom, Tammy. "She sees the individual pieces of that picture."
Tammy says when she first looked at Madelaine’s photos, they touched her in a way that few things had. She saw the viewpoint of a daughter who she had struggled to really understand for years.
"I think, as her mom, when we started seeing her photography for the first time, I was like, I understand why she gets overwhelmed by the world. Because if I saw every little fleck of leaf or moss, I don't think I could function either," Tammy says. "And yet she functions, just very differently from us. So it gave us a window into her view of the world around her."
She continues. "I, all of the sudden, understood why life was hard. Why it was difficult for her to be in a crowd or in a really wild or loud environment. All of the sudden, it was like, oh my word, if I had to process every little piece of information that I saw, it would make life really hard!"
By the end of last year, Madelaine had compiled thousands and thousands of photographs. She was already selling a few as postcards, but she and her family wanted to use the photos to introduce the world to mitochondrial disease. ArtPrize, they thought, was the place to do it.
However, Madelaine can't really talk about planning for ArtPrize. That’s because for her, much of late last year is one long, blurred memory.
It all started one night last November. The Martins were in Milwaukee for a checkup. Everything seemed fine. But as the family returned to their room, something was off with Madelaine.
"And she laid down and started chatting and stuff," Tammy begins. "And [she] just started saying, 'I'm just so cold I can't get warm.' I knew that was a warning sign that we were having a problem. And so we checked her temperature. She was truly cold."
They covered her in layers of clothes, but nothing worked.
"Within two hours, we were in the I.C.U., fighting to save her," Tammy says. "That's why there's not really a typical day. Just because a day starts okay, doesn't mean it'll end okay."
Madelaine was okay. But she suffered another setback a few months later. She had more surgery. She survived, but her memories of planning for ArtPrize were a hazy afterthought in the midst of a violent year. This year, though, her family brought the idea up again.
"But when I'm taking pictures of something I love and am happy, I can forget about it, and I feel like I have more energy than I really do."
"We knew what her vision was. We started to pick through all of these photos that had been put on cards and sold over the years and made them into the piece that was her vision," Tammy says. "It was really exciting to see her vision brought to reality."
They applied to the festival. Madelaine got in. It all came together in her exhibit: La Vie En Couleur.
The photos, from left to right, tell Madelaine’s story through her photography. It starts with green photos, representing the mitochondrial disease. Then it flows to black and white, representing the diagnosis, and the struggles of everyday. But the last piece is colorful, representing hope and life continuing on, despite her devastating disease.
Late last month, the Martin family took a trip to see Madelaine’s piece. For the whole family, it was the culmination of one of their toughest years.
"That was one thing we talked about," Tammy says. "It was like, this year has been so hard."
"But walking in, just seeing it in person, thinking this is all created by my daughter with a camera that started at an early age, and look where we are," says Martin's father, Doug. "And in sharp contrast to where we were last November and December, sitting in a hospital in Milwaukee, almost missing Christmas. Really not knowing what the future held. But standing there yesterday, sometimes, your blessings come in batallions. And it was really overwhelming."
"I went. And I looked at them," Madelaine says. "And it's like, oh! It really did happen. This -- it's real. And I didn't realize it was until I saw it hanging up."
The disease will always be a battle. The days still start at 5:30 a.m. with one IV and end at 11 p.m. with another. But through all of that, Madelaine’s photographs keep her going.
Besides ArtPrize, she now has another exhibit up, too, at the Van Singel Fine Arts Center in Byron Center. It’s something the family could never have dreamed of even just five months ago, but they say it’s given new hope.
"I think what mitochondrial disease has taken in so many different areas, photography has given her some life back," Tammy says. "And she is dependent on all of the IV's and IV meds and a ventilators and different things like that, but through her photography, she is still able to give back to the world she lives in. So it's given her back some quality of life that mitochondrial disease was stealing."
Both exhibits will be up through the middle of October. You can learn more about her ArtPrize exhibit here and her Van Singel exhibit here.
