When Camilla Nielsen told her family she was pregnant again, they were worried. Really worried. Nielsen has muscular dystrophy, an inherited disease that progressively weakens her muscles. Her first pregnancy had been physically gruelling and this time she was expecting twins.
Italian photographer Claudia Gori ’s documentary project "My Name is Camilla and I Love My Life" takes us inside 33-year-old Nielsen’s world five months after her daughters Esther and Agnes were born in 2014. “I put a call-out through the Danish Muscular Dystrophy Association. I originally wanted to do something about sexuality but it was hard to find a couple,” Gori told Refinery29.
“When I met Camilla, I knew immediately that hers was the story I wanted to tell.”
In the pictures ahead, we see the everyday struggles of early motherhood, made all the more demanding by Nielsen’s condition. Unable to lift her children on her own, she needs constant support. But despite the challenges, the mood of the photographs is gentle and uplifting. She might be much more exhausted than the average sleep-deprived mum but, as Nielsen feeds, bathes and soothes her children, you can feel the tenderness between them.
Diagnosed with her disability aged three, Nielsen used a wheelchair at primary school but trained herself to manage without it through intensive physiotherapy. After university, she went to work as a nutritionist in a health centre in Randers, Denmark, where she lives with her boyfriend Jesper, their elder daughter Ella, three, and the baby twins. She’d always wanted to be a mother.
“When I show this work to people, most of them are impressed with Camilla’s bravery but some say, I don’t understand why she put her children at risk,” said Gori. Because Muscular Dystrophy is a genetic condition, there’s a chance that it could have passed on to the girls. “Of course she hoped that everything would be alright, that the children would turn out to be healthy. But if not, then they’d have a life like her – and her life is beautiful.”
“For the first six months Camilla had a nanny, paid for with funding from the Danish government, helping her for 12 hours a day until Jesper, her boyfriend, came home from work,” Gori told Refinery29. “When I went back to visit her in January 2016, all three girls were in kindergarten so now she needs help only in the afternoon, when they come home from school.”
Photographed by Claudia Gori.
“When Jesper and I moved in together, we found a 10-year-old diary of mine, where I wrote my concerns about whether I would ever find a boyfriend who would see me as I am, and not worry too much about my handicap,” wrote Nielsen in a personal journal that she put together for Gori.
Photographed by Claudia Gori.
“Camilla’s oldest daughter, Ella, is already so independent,” said Gori. “I told Camilla, ‘Oh my God, she’s like an adult.’ Kids understand everything, even though you don’t explain, they know. She was always helping her mother and she’s also very caring with her younger twin sisters, she helps look after them. I think the children of disabled parents grow up more aware.”
Photographed by Claudia Gori.
Because of her condition, Nielsen can’t pick up her baby girls so when she wants to hug them, she lays down on the floor beside them. “When I took this picture I was really touched,” said Gori. “It must be sad for a mother not to be able to follow your child around. You can’t run or jump with them, you can’t play – it’s physical but it’s also psychological.”
Photographed by Claudia Gori.
“It’s not that often I think about my own future and my dystrophy, or about whether I might end up in a wheelchair again, which I think I will,” wrote Nielsen. “A few years ago a thought like that would have terrified me like hell because it would mean losing my independence but now I think if it gives me more energy to be around my girls and Jesper then I can sit in a wheelchair.”
Photographed by Claudia Gori.
“Camilla’s proud to be a mother, to be a woman, to be a girlfriend,” Gori stressed. “She’s very proud of her life in general. Through the project I think she wanted to say to other disabled women and to society that it’s possible to have a family, to take risks and be happy.”
Photographed by Claudia Gori.
“I spent three weeks in 2014 shooting these pictures with Camilla, sometimes staying over at her apartment. I was like one of the family,” Gori recalled. “This was during her maternity leave so she was at home almost all the time. It was really challenging for me as a photographer because I had just one context to work with. I decided to focus on her body, on her gestures and on the space of the house.”
Photographed by Claudia Gori.
“The only time I think it’s a problem that I don’t know my exact diagnosis is when I think about the future of my girls. I don’t think any of them has a dystrophy like me, but maybe they carry the genes of the disease so their children might get it,” wrote Nielsen.
Photographed by Claudia Gori.
“I have my off days and it’s OK to have days like that if you manage to get up again,” wrote Nielsen. “But I’ve learned to focus on the things I can change and not the things that are impossible to change.”
Photographed by Claudia Gori.
“One time Camilla was going to have a shower. It was the second day I was there so I was a bit shy to ask her whether I could come into the bathroom too,” said Gori. “She just looked at me and said, ‘Come on, I’m having a shower, this is one of the most challenging things for me to do. You should take pictures.'"
Photographed by Claudia Gori.
“During the pregnancy my body was like an enemy who fought against my organs. My pregnancy with Ella was also hard on my body, muscles, liver and kidneys,” wrote Nielsen. “After Ella’s birth, the doctors told us that these things would probably happen if I got pregnant again.”
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