“I know I have to eat correctly that morning and throughout the day, and that I have to budget myself for 12 hours of sleep, minimum, to recover,” she says.
Eating correctly means plenty of water and healthy snacks such as grapes, carrots, and cheese. Her advice for others trying to balance a busy job and lupus symptoms is simple: “Take control of what you can control.”
Orla Russell-Conway, independent film maker
A native of Dublin, Ireland, Orla Russell-Conway has always loved movies. In college she decided she wanted to be a cinematographer, the person who directs the lighting and the camera work for films.
After graduation in 2003, Orla was hired as a film trainee, the bottom rung on the Irish film industry’s ladder. She’d been at work barely a month when she was diagnosed with lupus. Three weeks later, she suffered a stroke.
“I was completely paralyzed on one side; I was in a physical therapy hospital for seven months while I learned to walk and use my arm again.”
After she recovered, Orla wanted to resume her job as a trainee, but couldn’t. “This sounds really stupid but because I had a stroke and I couldn’t carry two cups of coffee at the same time I was useless as an assistant.”
Orla realized that her lupus-related fatigue and joint pain, along with the weekly blood tests, would make it impossible for her to work the long days carrying heavy equipment that entry level film jobs required. She knew she wouldn’t be able to become a cinematographer the conventional way, so she came up with another plan.
“The only way I was going to be able to do what I always wanted to was to leap forward a few steps by getting my own equipment and making the films myself.”
In 2008, Orla was awarded a grant from Ireland’s Arts and Disability Forum. She’d requested funds to purchase camera equipment. She wanted to produce her friend, Fergal Rock’s, script ‘Henry and Sunny.’ “It’s about a society where clowns become the marginalized race. I’ve always loved it, because I always felt a bit like one of the clowns.”
The grant allowed Orla to by-pass the difficulties of the industry system, and work directly as a cinematographer. “I can take a less physical role in the production. This way, I still have all the creative input I want, but I delegate the physical work to a camera crew of my own.”
“Henry and Sunny” was well received, and was shown in film festivals around the world. The short film garnered several awards, including one for Orla’s cinematography. “That was amazing.”
Still, Orla found it difficult to be living with lupus symptoms like fatigue, while also managing a busy shooting schedule. “I forced myself to stay in bed on the days off.” She advises other people who want to balance their lupus with demanding jobs to prioritize their goals and stick to them.
This year, Orla was awarded a second grant from the Arts and Disability Forum. She’s used it to purchase new equipment to shoot a documentary she’s producing about invisible diseases, including lupus, migraines, multiple sclerosis, and brain injuries. It’s tentatively titled, “But You Don’t Look Sick.”
“I want to raise awareness of all the illnesses that people wouldn’t necessarily know about,” she explains. “I thought if I made a documentary then it would explain the issue to people so there might be a greater general understanding.”
Ann Utterback, vocal trainer
Ann Utterback, PhD loves her work as a broadcast voice specialist. In 1985 she started working with news professionals to help them improve the quality of their voice, their conversational delivery, and their appearance on air. “I’m so passionate about what I do. I just love working with voice.”
For 15 years, Ann traveled the world giving workshops, sometimes to hundreds of people at a time. She wrote books and articles, and worked one-on-one with major broadcast personalities. Then around 2000, she started feeling constant fatigue.
“I couldn’t get through even a 30-minute workshop. The energy was just not there.”
Doctors told Ann she had hypothyroidism, but medication failed to relieve the fatigue. It would take almost five years before she was diagnosed with lupus.
“I thought there was no hope, I was just going to have to quit everything and be sick, but then I started looking at it creatively and thinking, what are the tasks that I enjoy and how can I reinvent what I do in a way that works in partnership with lupus?”
Ann gave up the workshops and travel, and began offering telephone consultations from her Maryland home.
“That’s turned out to be really rewarding and it works really well with groups. Sometimes I do it with Skype, sometimes just the phone, I’m able then to work with clients one-on-one. Right now I have clients all over the country and I do it all by phone.”
Ann, who has published eight books, has also continued writing. “I decided to do a blog. I figured out a way to write without facing anyone else’s deadlines and it’s really proven to be very successful.”
Now 65, she’s thrilled she found a balance between the work that she loves and her lupus. “My career has been beyond my wildest dreams successful. Everybody should have, towards retirement age, that kind of satisfaction, because I feel like my job just couldn’t have been better.”
Marrian James, US Air Force Master Sergeant
Master Sergeant Marrian James, 43, was diagnosed with lupus in 2005. At the time, she was the Supervisor of Cargo Processing at the Charleston Air Force Base in Charleston, SC, tasked with making sure all the cargo headed to US troops in Iraq and Afghanistan was air-worthy.
Transporting supplies to the troops was an important job, and Marrian was determined not to let her lupus symptoms— which included fatigue, muscle cramps, and headaches—stop her. “You take the bull by the horns and press on. We were in the middle of the Iraqi war so we were working a lot of long hours; dealing with that fatigue was really a challenge for me.”
In order to relieve the stress of the long hours and her lupus symptoms, Marrian refereed high school basketball. “That’s my passion,” she explains. “Lupus-wise having that outlet, it helps me remain physically active. The exercise is important because it keeps me loose, and keeps my muscles from cramping.”
Marrian successfully balanced her lupus symptoms and her job, and later became Flight Chief for Passenger Service, responsible for transporting US troops.
During her military career Marrian had been stationed all over the United States, as well as Guam and Korea. Last year she retired from the Air Force after 22 years of service and she’s decided to call Charleston home, but just because she’s retired doesn’t mean she’s taking it slow. She’s active with the Lupus Listening Learning Group of Charleston, along with several military associations.
Marrian still refs basketball whenever she can, but she’s also embarked on a new career: teaching Junior ROTC at a local high school. “I still put on the uniform every day. I enjoy it. I am definitely leaving my mark, and there’s never a dull moment with teenagers!”