Chronic Illness

Because Sickness Doesn’t Mean The End Of Sexuality

Tonia Sina's extremely rare blood disorder has helped her teach others that having a chronic condition doesn't mean you're chronically unsexy.

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On stage, portraying love and sex can be perilous for actors. Performers take physical and emotional risks to enact a crush, a kiss, a caress. Add in the tension that simmers when a scene includes violence, or the uncertainty that looms when poor direction leaves major choreography decisions up to the stars, and the results can prove harmful: hands rove where they’re not supposed to, closed-mouth pecks get a dose of unwanted tongue, and on-stage relationships seep into actors’ personal lives in unhealthy ways. In the worst cases, people get hurt… all in front of a live audience.

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Photo: Ryan West Photography

Tonia Sina felt specialized coaching was needed to help actors navigate challenging material. Like stage combat or dance, she realized, intimacy could be choreographed and taught. That’s the aim of her pioneering workshop, Intimacy for the Stage, which Sina created to keep actors comfortable and safe when they’re at their most vulnerable.

The Oklahoma City-based actress and theater director might be uniquely equipped for this role. Sina, 35, has received two kidney transplants – from her mother and her husband – as part of her struggle with chronic kidney failure caused by Atypical Hemolytic Uremic Syndrome (aHUS), a rare blood disease. Vulnerability is nothing new to her.

“What happened to me health-wise has made teaching intimacy easier,” Sina says. “I try to put my students at ease by being vulnerable and I learned that by being sick. They definitely inform each other.”

Long before aHUS, acting was in Sina’s blood. She began performing in community theater as a teenager, then majored in drama at Niagara University. But at age 18, her kidneys started to fail. Continuously sick through the rest of college, Sina realized the hectic, unpredictable life of an actress would be too hard on her health. So she went to grad school so she could teach her craft instead.

Sina’s mother became her first kidney donor in 2005. The transplant went well. In 2009, she got married – but three months after the wedding, her health began to decline. Not only was her kidney failing, but her blood count was also mysteriously low. By 2011, she was on dialysis and barely able to walk.

Doctors eventually discovered Sina had aHUS. Tiny blood clots were coursing through her veins and clogging her kidneys, which couldn’t keep up.

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Photo: Ryan West Photography

After 14 years of illness, it was a “huge relief” to finally have a diagnosis, Sina says. But at the same time, the news was scary. “Suddenly I find out I have this ultra-rare blood disease that only about 300 people have, and the only way to treat it is with the most expensive drug in the world,” she recalls. That’s no exaggeration: Soliris, by drug maker Alexion, costs more than $600,000 per year for most patients. Sina requires an infusion of the drug every two weeks for the rest of her life.

At first Sina hoped her kidney would regain function on the life-saving drug, but it was too scarred. So in 2013, she underwent her second kidney transplant, this time from her husband Matthew.

“It’s overwhelming to go through it twice,” Sina says. “It’s an emotional process. It’s not just a surgical procedure; you’re literally taking an organ from somebody who is risking their life for you. It’s a very intense feeling to experience – a relationship that I can’t even describe.”

Sina’s whole outlook has shifted since then. She doesn’t know how long her husband’s kidney will last, or when she’ll be hospitalized again for a long stretch. When she’s feeling well, she makes the most of it. And when she’s not, she finds solace in a familiar place: her love of performing.

Soliris has kept the aHUS under control, but spending so much time in the hospital hooked up to an IV had an insidious side-effect: poor body-image and self-esteem. To lift her mood, and to reassure worried relatives she was in good spirits, she began dressing up for her medical treatments and using her hospital visits to take stylized, themed pictures of herself. She even started a blog to document her work: Kidneys and Pinups.

At first, the photos were just an outlet for Sina to entertain herself: posing with a bottle of Jameson for St. Patrick’s Day, faking a pregnancy for April Fool’s Day. But her funny, racy entries quickly became a platform where Sina could advocate for body acceptance and the idea that sickness doesn’t mean the end of sexuality.

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Photo: Ryan West Photography

“When you’re extremely sick and at your lowest, and you have tubes coming out of your chest, you start feeling like a patient and not like a person,” she says. “Once I started doing these photo shoots they really boosted my self-esteem. It’s a kind of therapy, a survival method for myself.”

The day of a treatment, Sina picks a theme and does her hair and makeup. She shows up at the medical center with a bag of props. (“They’re used to me,” she says with a laugh.) She sets up her iPad as she’s being hooked up, and once the treatment starts, so does the photo shoot.

Kidneys and Pinups has won Sina fans – and detractors. “There’s always someone who thinks I’m vain, or a narcissist,” she says. “But for me, the photos aren’t inappropriate – they’re beautiful and uplifting. It’s shocking to some people that you can express your sexuality and be attached to a medical device at the same time. But in my life, there’s no separation between the two. I’m a sexual being who also has a chronic illness. Those things aren’t separate for me, so I’m not going to separate them for anyone else either. Part of my advocacy is saying, ‘You have the right to survive the way you need to survive.’ No one can tell you how to survive.”

Much of Sina’s theater work focuses on giving other actors survival tools when portraying love and sexuality.

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Photo: Ryan West Photography

Often, performers arrive at her intimacy workshops saddled with horror stories of personal boundaries violated on stage. “There are so many instances of actors being harassed on stage and they don’t speak up because they’re young and don’t feel like they have a choice,” Sina says, echoing a chilling recent Chicago Reader investigation of a local theater. “The goal is to give actors basic rights. It’s a very emotional job; it’s dangerous to go into a role without protection.”

Sina’s own bad experience fueled her interest in this work. During grad school she was cast in a show, but she and her co-star lacked chemistry. The director told the pair to practice kissing in the lobby, unsupervised. “That’s not acting and not rehearsing. That’s just called making out. I knew it was unprofessional – something was going on that was wrong,” she recalls. The two actors broke up with their significant others to date, but the mismatched “showmance” only lasted until the end of the run. “This is the way things are often done: it’s up to the actors to figure it out,” she says.

Intimacy for the Stage, which Sina developed a decade ago and has taught in Chicago, Toronto, New York City and elsewhere, teaches actors to build chemistry in a controlled environment through eye contact, body language and finally touch. By coaching their movements and giving performers the chance to discuss their comfort zones, Sina helps establish trust and safety so the actors can concentrate on the work.

That sense of safety is important in the kinds of intimate, feminist pieces Sina favors (her directorial debut with Reduxion Theatre Company in Oklahoma City, where she came on as artistic director in May, was In the Next Room, or the Vibrator Play, a story about sexual discovery and, yes, vibrators).

Photo: Adoralee Photography

Everything Sina does nowadays — theater, pinup pictures and rare disease advocacy (she always gives speeches in a pair of zebra print heels, the colors of the rare disease ribbon) — is something she wants to do. Her aim, she says, is to live a “should-less” life.

“I don’t like wasting my time. When you are living off of someone else’s kidney, I feel like it’s my responsibility to make my mom’s and my husband’s commitment worth it. I want to be able to tell them, ‘You gave me years of health, and with those years, I did these things.’”

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