From the Archives: Spring 2006 Lupus Now magazine
Forging New Paths -- Three Women Triumph as Authors after Lupus Sidelined Their First Careers
by Resa Nelson
What happens to your career if you're diagnosed with lupus? How do you continue to work when the symptoms become too difficult to manage? Some people negotiate to reduce their office hours or work from home. Others, however, are forced to give up their careers and face the challenge of "what do I do now?"
Meet three women with lupus who refused to let the "what next?" question slow their momentum to make a difference. These women all rose to the occasion and found new careers and success in the literary world -- reaching their audiences one page at a time.
Reveling in Red
Amy Butler Greenfield was on a path to becoming a history professor when she was diagnosed with lupus at age 26. Recalling how her hands had ballooned, Greenfield says, "I was in excruciating pain most of the time and it felt like my body was falling apart."
Greenfield suspects she experienced lupus symptoms as young as age 17. "I occasionally get laryngitis, which is one of the more bizarre symptoms that people get."
While working toward earning a Ph.D., she found it painful to type, her joints were aching, and being in the sun was difficult. "I thought it was just stress. I was going through oral exams for my Ph.D., and I was getting married and moving abroad."
Greenfield, now 37, says on one hand, she was grateful for what she'd already experienced in life. She had lived in England, traveled to Spain, earned two college degrees, and married "a wonderful man." On the other hand, she wondered, what now?
Newly married, she took a leave of absence from her Ph.D. program to manage her health. The goal of living an academic life lost its appeal, and Greenfield asked herself what she really wanted to accomplish. The answer soon became clear. "I wanted to write a book that somehow told a story that spoke to people."
"It was less than a month from the time I decided not to go back [to the Ph.D. program] that the idea for A Perfect Red came to me," Greenfield says. "I don't think that's a coincidence. I've always heard that a clenched fist can't accept anything. You have to have an open hand. You have to let go for it to be filled. So this book was the gift I got that I would not have gotten any other way. It stretched me as a historian more than a dissertation would have done. It was the kind of book I wanted to write."
Before her diagnosis, Greenfield earned her master's degree at Oxford as a Marshall Scholar. Her thesis detailed the introduction of chocolate to Europe, which required her to spend several weeks in Spain for research. While there, she happened upon a surprising discovery: she found evidence that cochineal -- a traditional red dye of pre-Hispanic Mexico that comes from an insect -- was shipped from the Americas to Spain during the Renaissance. Years after her lupus diagnosis, she recalled this discovery -- which sparked the idea to write a compelling and true story about secrets, espionage, and piracy -- all for the sake of the color red. The result was her popular history book, A Perfect Red: Empire, Espionage, and the Quest for the Color of Desire.
Nearly a decade after her diagnosis, Greenfield has found success with her writing. To avoid the additional pains in her hands caused by typing, she uses voice-recognition software to dictate her stories. She's also published a children's novel -- under the pen name Amy Butler -- called Virginia Bound, about a 17th-century London orphan who was kidnapped, sold as an indentured servant, and shipped to colonial Virginia.
Greenfield often gives talks about her life and explains how having lupus has shaped her as a writer. "I've found that raising awareness about the disease, and providing encouragement to others with lupus, are two of the most rewarding things I do."
From Toys to "Chick Lit"
Eugénie Seifer Olson, 36, enjoyed studying graphic design at Boston University but soon realized she didn't want to make it her full-time career once she entered the workforce. After jobs at a children's museum, a lingerie store, and a toy company, Olson decided to make writing her niche. It was 1995 when she moved to Philadelphia to launch her career as a medical writer.
However, after four years, Olson was ready for a change. "I was missing my friends," she says. "I always liked Boston and had hoped to return."
During a routine doctor's visit back in Boston, Olson marked "joint pain" on the medical history questionnaire as a symptom she experienced regularly. Because she was only 28 at the time, it caught her doctor's attention who immediately ordered a rheumatology workup. A lupus diagnosis followed.
"It was pretty hard to accept at the time," Olson says. "It didn't sink in. But, I have a great aunt who has lupus, so I'd heard of it before."
In addition to joint pain in her hands and feet, Olson has suffered with low-grade fevers, chest pain, a facial rash, mouth sores, confusion, and depression.
"I've been able to work through it. I have an excellent doctor and I think that plays a big part in it. He's really reassuring and listens to me. Right now, my lupus is really well controlled."
At the time of her diagnosis, Olson had two part-time jobs and when one required her to travel, she quit. Working as an editor for Dana-Farber Cancer Institute, she asked to go from part-time to full-time and have the flexibility to work at home.
It was around this time that she began writing. She'd always been a popular guest at parties and social gatherings, thanks to the many funny stories she told about her job at the toy company.
"I realized that I was starting to forget all of the memories and scenarios that made the toy industry unusual and wacky, so I started committing my stories to paper," says Olson. "My first book grew out of that." When she realized she had a good book on her hands, she landed an agent and later published her first novel in 2004, Babe in Toyland.
When asked to describe her books, Olson says, "They're entertaining and engaging for a 'chick lit' audience, but they have more depth and the characters are more given to introspection. If anyone with lupus is interested in reading one of my books, they should pick up The Pajama Game, because it has to do with my experience, especially around the issues of being diagnosed and not being taken seriously. I read a review of The Pajama Game online that said the book almost veers into the political and that the character is critical of women not being taken seriously by doctors. I didn't intend that when I wrote it, but looking back on it, it's really true."
Adding Some Color to Romance
Linda Hudson-Smith, 55, began her career in public relations and marketing. Working at a large hospital, she was an editor who also organized programs for senior citizens. Her first symptoms of lupus began after the birth of her second child in 1978, but an official diagnosis wouldn't come until eight years later.
While reading an article about lupus in Essence magazine in 1986, Hudson-Smith realized she experienced six of 12 symptoms listed: among them, nose and mouth sores, joint pain, fatigue, and a butterfly rash across her nose and cheeks. She contacted the Lupus Foundation of America for more information as well as a list of doctors. She was diagnosed soon after.
Because Hudson-Smith worked at a hospital, her colleagues were sympathetic. "My boss would say, 'You do more in four hours than most people do all week. Why don't you go part-time and see how that works?'"
Hudson-Smith tried it all. She worked part-time, then full-time again, feeling guilty when she was away because she knew a temporary worker had to be hired to fill her shoes. After a 90-day disability leave didn't go well, Hudson-Smith decided to quit all together.
She recalls how she reached her lowest point about seven years after her diagnosis. "It was really a dark, dark time. First, you're so happy to find out you actually have something, and that you're not crazy. Then when you learn your illness has no cure, the fear sets in. I let it throw me. I got scared. I just didn't have a coping mechanism."
Hudson-Smith found some relief in prayer. "I was on my knees crying and praying. I said, 'Take me out of here or give me something to do at home. I need something to help me keep my sanity.'"
An avid reader of romance novels since the age of 12, Hudson-Smith happened upon a television movie adapted from a Jackie Collins book. When the movie ended, she thought, "I can do that!"
At that time, at age 43, Hudson-Smith had never written anything other than an occasional poem. But, nonetheless, she took a romance novel off her bookshelf, studied it, and dove headfirst into writing. From 1993 to 1999, she wrote 12 novels. When she sold one, the publisher soon discovered Hudson-Smith had a stack of unpublished novels and bought most of them. Today, 17 of her novels are in print.
Hudson-Smith has won several awards and honors, including an invitation from Black Entertainment Television (BET) to launch a new line of romance/inspirational books. As a reader, Hudson-Smith saw no African-American women on the covers of romance novels. As a writer, her work has put women of color front and center in the world of romantic fiction.
Hudson-Smith credits being a novelist as the path she needed to take. "It allowed me to focus on something other than lupus. I told myself I have to learn how to make lupus my ally rather than my enemy."
In the early days after diagnosis, Hudson-Smith thought she could fight her disease by ignoring her symptoms. She's since learned to pace herself and rest when she needs.
Pacing herself is key since she's also a dedicated lupus advocate who works to increase awareness through her numerous book signings and public speeches. She takes every opportunity to spread the word about lupus.
"It's been a long journey. I used to say, 'Why me?' Now I say, 'Why not me, if it's going to help somebody else.'"