BY SARAH FERGUSON | Artist Theresa Byrnes has never been one to shy away from a challenge. After being diagnosed at age 17 with a rare degenerative disease called Friedreich’s ataxia, she traveled to the Australian Outback and Brazilian rainforest, determined to explore the world on her own while her limbs could still carry her.
When the disease, which causes progressive damage to the nervous system, forced her to begin using a wheelchair, she took on bodybuilding, Kundalini yoga and other disciplines to keep her muscles and spirit toned.
Such drive earned Byrnes a Young Australian of the Year award in 1996 for her work in establishing a foundation to seek a cure for F.A. In 1999, she published her autobiography, “The Divine Mistake,” which chronicles her fearless path as an artist coming to terms with her disease. She’s mounted more than 25 solo shows and staged provocative performances — smearing herself with paint and oil, or mounting her near naked body on a giant spinning wheel in the dead of winter — in works that explore the limits of her body and the fragility of life on the planet.
Since moving to the East Village in 2000, her work has attracted patrons like Saatchi & Saatchi and Hollywood director M. Night Shyamalan. Yet at age 45, Byrnes says she is now confronting the biggest challenge of her life: being a mom.
“When I first found out I was pregnant, I had no idea if I could carry a baby to full term, so the first thing I wanted to know, can I do this?” she recalled. She booked an appointment with her neurologist, Debra Shabas, at Beth Israel, who “was so overjoyed, I had to tell her to calm down,” Byrnes laughed. “She was like, of course you can do this!”
Friedreich’s Ataxia is caused by a mutation of the gene for the protein frataxin (which regulates iron levels inside the mitochondria), but it can only be passed on if both parents are carriers of the abnormal gene. Since the baby’s father isn’t a carrier, there was no chance of Byrnes’s child developing F.A. Although the disease affects muscle control and coordination, studies show women with F.A. can deliver naturally and are no more likely to suffer complications during pregnancy than women without the disease.
But other questions loomed. Beyond the physical demands of giving birth and raising a child, Byrnes also had to confront how she would cope as a single mother, since the child’s father was not ready to commit to being a full-time dad.
“I went down to the East River on a hot sunny day and just sat there for hours — really soul-searching and thinking about how I was going to do it, and how my whole life was going to change. I really had to think it through and take responsibility for my decision.”
For more than 25 years, making art had been her driving force — and sole means of support. How would being a mom change that? And how would she take care of a growing child, given the increasing limits on her mobility? To attend to an infant, she would need someone there 24/7.
“I don’t like getting a lot of help. So that was a really big issue for me — how much am I willing to let go of my own private space? As an artist, writer and a thinker, I need so much quiet time to percolate ideas. It felt like the death of my old self and rebirth of a new. It felt like letting go of my whole being. I was aware of all these things, but still this new life in me was undeniable.
“Finally, I realized I am willing to make changes and put myself second,” Byrnes explained. “I thought, this is my last opportunity. It’s too special, too miraculous to deny,” she added, her eyes burning with excitement.
As if on cue, as she was speaking, her newborn son, Sparrow Joe Louis Byrnes, gave a small gurgle and extended a tiny hand from beneath his blankets, nestled inside his white wicker bassinet. He was born at Beth Israel Hospital on Feb. 13 at 6:20 p.m., after 15 hours of momentous labor.
Giving birth when you’re past the age of 40 tends to freak hospital staff out. As your due date nears, they start sonogramming like crazy and feeding you stats about the higher risk of stillbirth for older moms — regardless of your own health history. So it was surprising to hear that Byrnes’s midwife and her supervising physician both assured her early on that she could have a vaginal birth.
“They didn’t want to give me a C-section because of the problems healing,” Byrnes revealed. “I use my core so much, so it would be really hard to cope with an incision there.”
Byrnes says her pregnancy was relatively easy. But at 39 weeks, her doctors began pushing for her to be “induced” rather than wait for her body to go into labor.
“They felt it was better for me to go to hospital and have a team in place and ready,” she said. But Byrnes was afraid if she went in too soon, she could wind up with a C-section. Finally, she agreed to be admitted at 40 weeks and a day.
“But I really wanted to steer clear of Pitocin,” the drug used to induce labor, Byrnes explained. “I had read studies showing the benefits to the mother and child of oxytocin,” the hormone released during labor that causes a woman’s body to initiate contractions.
Pitocin is a synthetic form of oxytocin. Recent studies have shown it may have more adverse effects than previously believed — one study last year suggested children whose births were induced may have a higher risk of autism.
“So I said, O.K., I’ll come in, but let me try to do the birth naturally first,” Byrnes said. To help bring on labor, her midwife inserted a small balloon to help expand her cervix. Then Byrnes asked the baby’s father to suck on her nipples to stimulate the natural release of oxytocin, which helped dilate her cervix further.
“That got me to 10 centimeters, but my contractions were still very far apart. They broke my water to speed the contractions up, but it didn’t, it just made them unbearable. I was shitting and projectile vomiting from the pain, so they gave me an epidural, and then all the doctors wanted to give me a very low dose of Pitocin.
“And I said no, just give me 20 minutes my way, and if it doesn’t work, we can do it your way,” Byrnes recalled. “They agreed, but they were all still bickering, so finally, I yelled, ‘O.K, shut up!’ I grabbed [the baby’s father] and said, ‘Let’s do this, stimulate my nipples.’ So he was holding my right leg up and tweaking my nipple, and my best friend Kevin was holding my left leg, and the contractions were coming.
“Everyone was cheering as the baby was crowning. I was listening to Hindu chants to the goddess Durga playing over on my iPod. She is the goddess who gave birth to the universe,” Byrnes explained. “I thought if Durga can do that, then I can give birth to a child.
“My body is very strong down there,” added Byrnes, who practiced Tantra yoga for many years. “I have a really strong connection to my core and control of my internal muscles.
“And I did it. I pushed him out in 20 minutes!” Byrnes said triumphantly. Considering her son was 8.5 pounds at birth, that’s quite a feat. “At the breastfeeding class in the hospital, there were two younger women there, and they both had had C-sections. It made me so proud of myself,” she said.
Now Byrnes has embarked on a new journey — being a full-time mom.
“He’s totally what I felt from the beginning,” she said as she positioned her tiny boy on her breast to nurse. “Now I’m meeting him and he’s exactly what I felt: really strong, very determined, very calm and totally present.”
With his shock of black hair, caramel skin and alert brown eyes, he is a startlingly beautiful baby — “my greatest creation ever,” Byrnes laughed.
She decided on the unusual first name of Sparrow because of her special affinity for birds.
“Sparrows have trained me for motherhood,” she explained.
“Since 2007, I have found or received sick sparrows to look after till they’re well. The last one fell from the nest and my friend brought him over. I was really being his mummy bird — he consumed my whole life. Then one day he just died.
“I was devastated,” Byrnes continued. “I did portraits of him, and then I had a whole exhibition of [abstract] paintings I made with with my hair and feathers, called ‘Sparrow Heart.’ It was about how connected I am to the birds. I wrote an essay about it for my blog (theresabyrnes.com/studiodiary), and then later that night I conceived. So I really feel that my baby is a gift from the sparrows.
“His second name is for Joe, my father, who is my favorite male human being on the whole planet,” Byrnes continued. “The boxer Joe Louis was a great man as well, and a distant relative of Sparrow’s father, so that’s how I decided upon Sparrow Joe Louis.”
But as any mother knows, giving birth is a piece of cake compared to the real labor of caring for a newborn. Theresa’s mother flew in from Sydney to see her through the final weeks of pregnancy and is now staying with them. Theresa also has a home attendant who comes every day for several hours to help with the baby.
But making room for Sparrow was another dilemma. Bynes customized her tiny studio on E. Ninth St. to live independently in a wheelchair. But the place is simply too small to accommodate a baby and all the gear that comes with him — especially with her mom moving in. After Byrnes hired a friend to create a nursery by winterizing what was essentially a greenhouse attached to her storefront’s back porch, the landlord sent an eviction notice, accusing her of erecting an illegal structure.
“Initially, I thought I would have to go back to Australia and live with my parents,” Byrnes revealed. But now, thanks to a Lower East Side group, People’s Mutual Housing, she has been approved to move in to a two-bedroom apartment — big enough for her mom to stay on if she wishes, or for a live-in nanny.
“I have a great life in Australia, but I really want to stay here,” Byrnes said of the East Village. “I have my whole life here, it’s my neighborhood.”
In fact Byrnes’s family has roots in the East Village: Her great grandfather was bricklayer on the Lower East Side in the 1800s, and her great grandma a New York Jew.
Byrnes herself first visited the East Village in 1998.
“I met [performance artist] Penny Arcade, got a studio, and had an exhibition at the Angel Orensanz Center,” on Norfolk St. “After that, I knew the Lower East Side was my home. But I went back to Sydney to finish my book and then returned in 2000.”
She first moved into a basement space on Rivington St. — not exactly wheelchair accessible.
“I would paint in there for three days straight,” she recalled. “The art store would deliver my materials. And every three days, a friend of mine would carry me out. I’d go to the gym, the cafe, buy food — then I went back down again. It was hard-core!” she laughed.
In 2003, she got a storefront on E. Fourth St. Every Sunday she opened her front door and turned her home into a salon. When a Chinese restaurant wanted to take over her space, her landlord offered her a lease on E. Ninth St.
For a time, she rented a large painting studio in Chelsea. Then in 2010, she opened her E. Ninth St. gallery, Suffer — where she has hosted jam-packed openings, performances and film screenings.
When asked how she thinks being a mom will affect her career, she rolled her eyes.
“No idea. Obviously, I am going to paint portraits of my son all my life,” she said. “But I’m not driven by my work right now.”
She’s holding a fire sale of her works to raise money for Sparrow from March 15 to April 6 (theresabyrnes.tumblr.com), then subletting her gallery for a year to devote herself to mommydom. A Los Angeles film company is making a movie about her life based on “The Divine Mistake.” And her literary agent is clamoring for her to finish her second autobiography. She’s returning to her homeland in May for a solo show in Sydney.
So, even if this latest chapter in her life was very much unplanned, it seems like everything is falling into place. Still, doesn’t she worry that as the disease progresses, her son could be left someday without a mom? Studies show most people with F.A. survive 30 to 40 years after diagnosis.
“There’s no point worrying, ‘what if? what if?’ ” Byrnes responded. “People die all the time. I could be hit by a train tomorrow. I’m all right now, and I think I’m going to be around for a long time.
“If I only have 10 years left, in 10 years things will work out — they always do,” she added, displaying her unflagging optimism. “I have amazing friends and family here and in Australia, so the right people will come forward if they need to.
“I’ve never lived my life I fear,” Byrnes explained. “I trust that the universe will look after everything — it always has in my life. Look at my life and what I have achieved. Look at the birth.
“People say, wow, you’re a force of nature. But it’s not me. Nature is amazing. I’ve embraced nature, and that’s what I’m going to teach Sparrow: To embrace nature and not live in fear.”
