Rather than try to give visitors directions to her house in the hills of southwestern Missouri, Phyllis Arnett will gladly meet you at the Mobil station. You can follow her red pickup truck along winding dirt roads, over steep hills, to the “Beware of Dog” sign that marks her property.
There’s not a lot out here, just peace and quiet, and that’s fine with Arnett. The solitude allows her to work long hours without interruptions on her latest creation: a quilt that pays tribute to people afflicted with lupus, an incurable autoimmune disease.
Arnett’s 18-year-old daughter, Theresa, was diagnosed with lupus last year, after almost 10 years of unexplained aches, pains and rashes. As a child, Theresa often looked as if she was “walking on pins and needles,” Arnett said. In high school, Theresa frequently required crutches to get around, her knees would swell so.
Although she felt relief at finally knowing what was causing her daughter so much pain, Arnett, 41, said she felt guilty too, for not recognizing the symptoms sooner.
“When the doctor told us what it was, we just sat and stared at him,” Arnett said. “I knew absolutely nothing about lupus before this. And in a town this small, it’s hard to get much information.”
The Lupus Foundation of America defines lupus as a “chronic, autoimmune disease which causes inflammation of various parts of the body, especially the skin, joints, blood and kidneys.” The disease tends to strike more women than men, although the cause is unknown. When a person has lupus, the body becomes unable to distinguish between healthy and unhealthy tissue and attacks both. According to the foundation’s statistics, more people have lupus than AIDS, multiple sclerosis, cerebral palsy, sickle-cell anemia and cystic fibrosis combined. Although lupus is treatable, there is no cure and it can cause life-threatening illness.
Arnett turned to her computer and discovered a gold mine of information on the Internet. She found the home pages of several lupus-related organizations, medical resources and support groups. Using the pseudonym “Chelsea,” she became a regular on the Lupus Forum, a Web page that allows users to post questions and topics for discussion. She was particularly struck by the accounts of the emotional impact of the disease and began to understand how her family’s life was about to change dramatically. After one on-line session, Arnett drifted into a fitful sleep.
“I went to bed with this feeling in my heart, that people were screaming for someone to listen and that surely, I could do something to help,” she said. “Now I know this will make me sound crazy, but I heard a voice say, `Get off your butt and make a quilt.’ I mulled it over and figured, If they can do it for AIDS, why not for lupus?”
Arnett came up with an idea to make a quilt composed of fabric squares designed by victims of lupus and other autoimmune disorders, to be displayed at state fairs, quilt shows, libraries and other public forums. The quilt, she hoped, would draw attention and provide an opportunity to convey important information about autoimmune diseases.
“Up to that point, my only source of information had been the Internet,” she said. “We’d reach out to friends, but when they heard us talk about this being a blood disorder, they’d pull back. Lupus is a very, very misunderstood disease and I saw this as a way to get the word out, to create some awareness.”
The reply was overwhelming. Arnett received quilt squares from as far away as New Zealand and South Africa. The effect of the finished quilt is kaleidoscopic. The squares are cut from a variety of fabrics of all colors and illustrated with the hopes and dreams of their senders. Some have photos, one is adorned with sequins, another with feathers, still others are embroidered with names, poems, biblical passages, dates of birth and for some, dates of death.
Arnett had anticipated assembling only one quilt, but the squares kept coming. She has completed one 120-block quilt, which is touring the United States, and is at work on two more.
The endeavor has changed Arnett’s life considerably. In addition to the emotional impact a lupus diagnosis has on a family, the quilt project has changed her life in practical ways too.
“I thought I’d just be sewing it and sending it off,” she said. “But it’s turned into a full-time job.”
Now, after long days spent minding 80 acres of land and 40 head of cattle, she spends evenings at her sewing machine. She has enlisted volunteers to take the quilt around the country and to recruit prominent figures who might help focus attention on the disease.
“I’d really like to be able to get the quilt to the White House,” Arnett said. “This is not a silent disease. People with lupus might look fine on the outside, but there’s all sorts of emotional turmoil going on inside.
“It’s so hard to understand if you’re not in that body. The person with lupus just wants to get up one day and feel good, like they could go out and do something. They live for that day.”
Volunteers spread the word and her mother helps with the quilting, but Arnett insists on writing thank you notes herself to those who have sent quilt blocks.
“I want to reassure everyone that their work is beautiful, and it’s appreciated,” she said.
Arnett believes that kind of recognition is critical.
“When I think of the ways this changes people’s lives, it rips me up,” she said. “People have trouble with their insurance, with their relationships. I hear about marriages that fall apart when the partners can’t deal with the changes, about families that fall apart. Sometimes I think, Well, all I can do is sit and make a stupid quilt. But they need to know someone cares.”
She said she had tried to convey that to her daughter, who left home to move in with friends in May. Arnett said she become an “overbearing mother” after Theresa’s diagnosis, constantly checking her for signs of fatigue, “nagging her about taking her medicine.” They began to argue about Theresa’s behavior, and finally, her daughter moved out. The separation has been difficult.
“I miss her,” Arnett said. “I’m trying to give her time and space to sort things out. I write letters to her, but I try not to get really personal or judgmental, just short notes to tell her what’s going on. No matter how angry she is at me, she needs to know that I love her and I just want to protect her.”
Arnett worries about Theresa, worries that she will stop taking her medicine while she is symptom-free, and that the summer will be particularly difficult. In some lupus victims, overexposure to the sun can bring on rashes, inflammation or other severe symptoms.
“The summer’s really tough,” Arnett said. “All the things Teri and her friends love to do — lay outside in the sun, go on float trips, spend the day at Six Flags — she can’t do. The sun is her biggest enemy now.”
So she worries. And while she worries, she sews. Her latest project may be the most difficult, a memorial quilt that pays tribute to people who have died from autoimmune diseases. The parents of one victim, a young boy, plan to come to St. Louis this year to view the quilt and thank Arnett for her work.
“I feel like I’m being given all these stories to tell, and that makes it hard sometimes. You feel like you know these people and what they’re going through,” Arnett said. “But I always said I’d keep sewing as long as the squares keep coming, and so far, they’re still coming.”
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Phyllis “Chelsea” Arnett’s e-mail address is whiskey@fidnet.com; 7-inch by 7-inch quilt squares can be mailed to her at Chelsea Arnett, P.O. Box 447, Bourbon, MO 65441.
