Water has given Cody Unser an awareness of terrifying and wonderful things.
In a moment of stark realization at the age of 12, while sitting in a bathtub, she first felt symptoms of the condition that left her paralyzed from the chest down. But just two years later she experienced an exhilarating freedom from her wheelchair and reclaimed her independence while learning to scuba dive.
Eventually diagnosed with transverse myelitis, Cody — the diminutive granddaughter of race car legend Al Unser and daughter of two-time Indy 500 champion Al Unser Jr. and his wife, Shelley — credits Christopher Reeve with helping her learn how to live life to the fullest and use her voice at an early age to help others.
When she was only 13, she started the Cody Unser First Step Foundation, much of which was self-funded, with help from the Christopher and Dana Reeve Foundation and Newman’s Own. As a junior in high school in 2005, Cody traveled to Washington, D.C., to watch Congress debate the Embryonic Stem Cell Enhancement Act. There, she realized an idea of bridging politics and science, and in 2009 created and received a degree in biopolitics from the Johnston Center of the University of Redlands in California.
In college she allowed cameras to follow her around campus and into her bed and bathroom to film a documentary that premiered last year. Cody: The First Step includes an intimate scene of showering followed by a slippery, “hold your breath” transfer into her chair — while portraying a woman questioning society’s moral obligation and showing the situational ethics of disability.
In 2008 she campaigned for Bill Rich-ardson as his disability ambassador during his run for the Democratic nomination for president. She has lobbied for stem cell research at the federal and state levels, and plans on getting a graduate degree in public health and becoming a lobbyist on Capitol Hill to help scientists understand the political aspects of disability and vice versa.
But first, she wants to take her foundation to the next level and has partnered with Paralyzed Veterans of America to create Operation Deep Down, an arm of her Quality of Life and Cody’s Great Scuba Adventure programs that will offer expense-paid trips to wounded military veterans to get their certification in scuba diving.
Birth of a Foundation
Cody’s dream since age 7 was to scuba dive. Growing up in Albuquerque, N.M., she was very athletic in her early years — practicing gymnastics, cheerleading at sports events, playing basketball.
“My parents and brother, Al, who’s four years older, went diving, but my sister and I couldn’t — you had to be 12 years old,” says Cody, now 23 and living in Houston with her boyfriend of five years. “I vowed I would do it as soon as I turned 12.”
But her dream of diving was dashed when, while playing basketball, she suddenly couldn’t catch her breath and got a powerful migraine. Paramedics rushed her to the hospital, where her legs became numb and began to tingle. She was unable to move them, nor could she urinate; the ER doctors thought she was dehydrated or experiencing pubescent hysteria and sent her home. Unable to walk, Cody was carried by her grandfather to the car and into his home.
The following morning, Shelley flew home and called their primary care physician, who came to their house and put Cody in a bathtub to see if she would urinate.
“I knew something was really wrong because I couldn’t feel the temperature or texture of the water,” Cody recalls. “At that point I was terrified and I broke down.”
Cody returned to the hospital for two weeks of testing. “During those two weeks, there was no answer, no diagnosis, it was beyond a nightmare,” her mother says. “I had two things going over and over in my head: She’s a smart little girl, how do I not show her how scared I am? And, who can help us?”
Help came via Roger Penske, who Cody’s father — who left a televised race to be with his daughter — drove for.
“One of Roger’s sponsors, Phillip Morris, donated a lot of money to Barth Green, who started the Miami Project,” Shelley explains. “In a series of phone calls we got in touch with Dr. Green who got on the phone with our ER docs to get some understanding of what was wrong. He then called a colleague who came and checked her out, ruled out a tumor and diagnosed transverse myelitis.”
Then came rehab at Barrows Neuro-logical Center in Phoenix. “I thought rehab was where they were going to teach me how to walk again,” Cody says. “Nobody told me I was paralyzed, or that I’d be using a wheelchair for however long. I think everybody was too afraid and didn’t want to admit it. I think there was a lot of denial.”
“There was a misunderstanding of what was wrong,” says her brother, Al Unser III. “At first we didn’t know what was happening. Nobody knew how it was going to turn out.”
“Diagnosis is crucial,” Cody urges. “If you’re given steroids and the right treatment in the emergency room, you don’t have to go home paralyzed. At least the outcome is much better if it is diagnosed quickly.”
Cody’s parents were heading for divorce prior to her illness. “I don’t know what a dad is, and I’ve been fine without one. He’s now in my life but not completely. It’s hard to describe … we’re friendly with each other. But it’s definitely shaped me — I’m very stubborn and independent.”
After Cody’s paralysis, the family split up even further: While Shelley stayed in Phoenix with Cody, her three other children — Al, 16, Shannon, 10, and 1-year-old Joey — stayed with their grandparents in New Mexico.
“To say I would be paralyzed forever, nobody knew, nobody had any idea,” Cody says. “I think it was something I had to find out on my own anyway, to deal with on my own. I realized I was paralyzed when they were teaching me to dress myself in the wheelchair.”
After rehab, mom and daughter had long discussions about the problems that misdiagnosis creates and the lack of knowledge about TM. Shelley told her daughter, “You can do something about this.” And with that, the Cody Unser First Step Foundation was born.
“I actually believe the start of her foundation was while she was in the hospital,” her brother Al says. “She could hear babies crying and see all the other kids’ rooms in intensive care. Cody had all of us distribute her stuffed animals and flowers to them. Here she was, 12 years old and she wanted to help other people who were in the same situation.”
Operation Deep Down
At home, now 13, watching her teenage friends do teenage things, Cody realized her life was going to be much different than that of her friends. She wasn’t socializing, so her brother Al pushed her in rehab by removing anti-tip bars from her chair and teaching her how to do wheelies. “She didn’t want to hang out with her friends or let them see her,” he says. “Or maybe it was the difficulty of doing something … she wasn’t going anywhere. If we were going to McDonald’s or Sonic, I’d say, ‘You’re coming with us,’ and just throw her in the car. She was like 60 pounds.”
Then he motivated her to scuba dive.
“Once I learned and got my certification in the ocean, I got my freedom back, my independence,” Cody says. “You’re free in the water, you’re not dependent on your wheelchair to move you around. With scuba diving, I realized that life does go on and I didn’t have to get swallowed up in what was happening to me.”
Cody’s initial goal with her foundation was to raise awareness of early detection of TM and subsequently to fund stem cell research. Later, she also created Cody’s Great Scuba Adventure, to give individuals with disabilities the opportunity to receive their certification in scuba diving.
Having realized what it’s like to suddenly “question the rest of your life,” and watching the young men and women coming back wounded from the war in Iraq, Cody decided to start a scuba diving program for the military, regardless of injury type.
The Unsers created Operation Deep Down and are now partnering with Paralyzed Veterans of America to provide scuba diving certification for wounded veterans. “I’ve had incredible mentors, but I know what scuba diving did for me,” she says. “Our mission is to get these men and women underwater. There are other dive programs out there, but we pay for this trip.”
Though the goal of CGSA and ODD is certification, it’s also a time for divers to hang out at a resort and meet new people.
“It’s about the diving, but you share your stories, your triumphs, your worries … techniques like going to the bathroom … sharing what you go through,” Cody explains. “It’s very therapeutic, both mentally and physically. After people do their first ocean dive, they come up to the boat and it’s a never-ending smile … they’ve accomplished something so huge. It’s a dangerous sport that you have to train for, and after that first dive, everybody feels like they can do anything.”
But scuba diving for people with disabilities takes a lot of support.
“As a C7 quad, I can’t go to a scuba store and get bottles and equipment, then go jump in a boat, take it out to the middle of the water and go dive,” says Al Kovach, national vice president for PVA and past CGSA dive participant. “You really need a support group because there’s so much involved. It’s really labor intensive to get, as we call it in the military, ‘jocked up’ in the wetsuit, scuba tanks and gear. It’s hard enough on a nondisabled person, plus you’ve got to schlep all this equipment around, get it onto a boat and have someone go down with you … It’s always a bad idea to scuba dive by yourself.”
Kovach says it’s not yet to the point where a typical scuba team can take down someone who uses a wheelchair.
“A lot of people would get nervous diving with somebody disabled,” says the ex-Navy SEAL, trained in special scuba diving operations. “But Cody and her foundation have a network of people who are certified in scuba diving with people with disabilities. She’s also teaching others to be instructors and dive buddies.”
Until a dive that Cody sponsored at the Hershey Recreation Center in Hershey, Pa., Kovach hadn’t even thought of diving again, after a parachuting accident left him paralyzed.
“That first time, the ‘sound’ of no sound brought back a lot of memories,” he says. “It was therapeutic in many ways, and it felt good to be underwater again. It also opened my eyes that maybe I could take this to the next step and participate in Cody’s foundation.”
Thanks to Kovach and Jim Hay — a para and board member with PVA who’s training to become an instructor with Operation Deep Down — PVA is now involved with the diving program. Cody and Shelley themselves maintain a strong connection to the racing community, plus the youngest Al is building a racing career, and Cody’s boyfriend, Beaux Barfield (Al’s ex-coach) is a race official with the American LeMans Series.
With these connections they are hoping to find sponsors to fund the first military certification dive trip next summer. To qualify, veterans will have to pay for their own scuba training in their hometown, prior to certification. Operation Deep Down is hoping their racing friends will sponsor individual veterans to help them pay for training.
“We’re in a funding crunch due to the economy,” Cody says. “The other trips we did were paid for through foundation funding. Back then we got airlines donating tickets. Now were doing all we can to make this Operation Deep Down trip happen.
“You’ve got to live your life to the fullest and use your voice for a bigger mission,” Cody summarizes. “After you become paralyzed, you have to dig deep to find happiness. But you should know that life does go on, and just like with scuba diving, you can do this!”
For more information on transverse myelitis, visit www.myelitis.org.
In an excerpt from Cody: The First Step — a documentary aired nationally on PBS, narrated by Glenn Close — Cody explains what it was like to learn how to be intimate as a woman who was paralyzed during her adolescence:
A lot of people don’t really think people who are paralyzed are sexual and let me just clear the air right now. I am definitely sexual … I definitely have a sex drive, I’m definitely horny. But it’s something that I think a lot of people misunderstand. There’s a stigma attached to people — and especially women who are paralyzed — that they’re dependent, they’re incompetent, they’re needy, they’re asexual, they require a lot of attention … I mean, there are so many things that I think are attached to women … who are paralyzed.
That’s definitely one of the things that I want to break, and I think once I started experiencing, experimenting with my sexuality when I was 16, and getting to know my body as something that is sexual, I began to realize that any fears or any doubts that I had about how I was gonna be intimate with a guy were definitely demolished.
Being intimate at that level [having intercourse] with a guy, for me it’s a huge trust factor because I can’t move my legs, I can’t get up and run away … a lot of the interaction during sex … has to be really controlled by him because I … can’t really move my body about his, so the intimacy level is suddenly heightened … I basically have to surrender to him and that in and of itself is really hot and sexy.
I Am Not My Body
For her self-designed college degree, biopolitics, Cody Unser took classes ranging from government to philosophy to world religion to the upper sciences such as neurology, immunology and genetics. In her senior year she prepared and taught a class titled, “I Am Not My Body” to understand the philosophical meaning of words “disability” and “normal” and how it impacts our daily lives.
One nondisabled student, Olivia Crowley-Scranton, whose self-designed major was Communicative Differences, talks to NEW MOBILITY about Cody’s class:
Cody’s candidness on the first day made me feel safe. She is so raw … she didn’t hold anything back. We weren’t afraid to offend each other or express our opinions. We had a code of silence, which set the tone and allowed us to share fears, conceptions, hurts, joys, insecurities, opinions and, frankly, things we wouldn’t share with our best friends. She did not just probe us with questions, she started conversations that led us to collective conclusions, which is very rare in academia.
I found myself opening up in ways I have never done. We talked about relationships a lot and exposed the intimate side of how disability can affect them. I didn’t realize how many different degrees of varying intimacy a person with a disability can have. You get creative and really relate to one another in physical ways that others might not. That opened my eyes — I would never have thought of a person with a disability being intimate. It’s all the preprogramming we get from societal norms.
We discussed the semantics we use to describe somebody, and how it puts them in a box. That a child or person can’t walk or pronounce something isn’t a “disorder” to me any more. I felt that way in the past because I’d only been exposed to the medical model of disability. Cody’s class will stay with me for the rest of my life. I will always be teaching awareness.
Pushing Beyond Limitations
Shelly White, 35, a school teacher from Lebanon, Pa., heard that a scuba diving operation for people with disabilities was going to be at her alma mater, Lebanon Valley College. It had been several years since White, injured at C5, was last in a pool, so she wanted to just observe the event.
There she met Shelley and Cody, who invited her to attend a diving experience the following day at the Hershey Recreation Center in Hershey, Pa. At the Hershey pool she met Jim Elliott and Al Kovach.
“I really had no intentions whatsoever of getting in the pool, I was just watching everything and got talking to Cody,” White explains. “She told me, ‘This is a once-in-a-lifetime thing, you better get in.'”
White decided she’d at least see what it’s like to put on the gear. With two women on the dive team helping, they wiggled her into a wet suit.
“They got it on over my legs, then I leaned into the person in front of me,” White explains. “They pulled it up over my shoulders and stuck my arms through. We realized we had it on backwards … but it worked so we went with it.”
Next thing she knew, White was poolside, getting directions from instructor Elliott, who taught her the quad “OK” sign — holding your hands together at your chest.
“Then he took me down into the pool,” White explains. “I was frozen and experiencing a crazy mix of emotions — adrenaline, excitement and I was scared to death! I put my hands in the OK position and didn’t move another thing except my eyeballs the whole time underwater.”
Elliott took White through baby steps. By the time they surfaced, White says she was so choked up with emotion, she was unable to talk and she was still doing the quad OK.
“I will never forget that experience,” she says. “I learned that I can push beyond what I see as limitations.”