KATHLEEN “KAYE” FLEMING: Life With Progress and Hope
by Jan Grice
At age 77, Kathleen “Kaye” Fleming knows a lot about life with lupus. Diagnosed over 40 years ago, Kaye has walked a long journey with lupus and has much to share about her personal journey. A past Board Member and Recording Secretary from the very early days of the Lupus Foundation, she has seen first-hand the effects of patient advocacy on the increase in lupus services and public awareness. And, she can attest to the encouraging changes in the medical community – significant medical advances that have positively affected diagnosis, care, and prognosis for patients with this troubling disease. Her long view gives an insightful perspective into life with a chronic illness. While the disease will never “go away,” Kaye’s outlook shows that there is still much room for hope. Having experienced the difficulty of diagnosis and the lack of information in the 1960s, she knows well the value of integrated, comprehensive health care today. Kaye’s story parallels the story of lupus research, patient education, and public awareness over the last half century. Both are stories of progress and of hope.
Lupus is a long-term guest at the Fleming household, accompanying the family through decades of child-rearing, moves, retirement – all of life’s joys and sorrows. The uninvited guest arrived when Kaye was in her thirties. Shortly after the birth of her fourth child, Kaye began to feel extremely fatigued. She noticed occasional unusual rashes and some lesions on her scalp. She saw a general practitioner, who told her, “No wonder you’re tired! You’re chasing after four young children. Get some rest.” The symptoms persisted, and Kaye continued to seek medical help. In 1964, she saw a rheumatologist. “The test results were negative, but he told me that I had lupus Erythematosus. I immediately forgot the word! He told me to buy a hat and wear it when I was outside with the children. That was the only information he gave me.” This lack of detail and explanation was typical of the doctor/patient relationship at the time. Kaye followed his orders, without knowing the reasoning behind them. Having a very light complexion, she had always been somewhat sun-sensitive. She bought a hat and wore long-sleeves.
Her new accessory was put to good use the following year when her husband Patrick was transferred to Venezuela. The family made the move to the tropical country, with the four children in tow. Even with her hat, Kaye admits, “It was very sunny!” Before long, she had a flare-up, with pain, fever, chills, malaise, and the typical rash on her cheeks. She saw a doctor there who, though her lab tests were still negative, was sure she had lupus, and prescribed a steroid. Kaye quickly recovered. In the summer of 1967, during a visit home to Pittsburgh, she was sick again. After a hospitalization at Presbyterian Hospital, she was “diagnosed” yet again. “My sister was a nurse, so I looked up lupus in her books. I remember what it said: Lupus Erythematosus is a disease of connective tissue that is fatal in attacks of the heart, lung, and kidneys. I was very scared.”
After five years in Venezuela, the Fleming family’s next move was to Hudson, New York, south of Albany. Over the course of the family’s seven-year stay there, Kaye struggled with poor health and multiple hospitalizations, while managing her household and raising her children. “My children and husband have always been so supportive. I am so grateful that they always recognized that I had a problem and were willing to accept my limitations and help with chores.” Kaye’s sun sensitivity made it impossible for her to do outdoor activities with the children, and oftentimes she would be too ill to participate in school events. She shares the frustration of many lupus patients in trying to explain to friends, when often her outward appearance gave no indication of how she was feeling at the time. “I’d have to explain to people why I was wearing a big hat, pants, and long sleeves on a hot summer day!”
Kaye sought the expertise of lupus specialists at the University of Connecticut Medical Center in Hartford, where she underwent more testing. Her disease activity increased, with worsening arthritis. “It was to the point where I could not walk.” She was treated with high dose steroids, Plaquenil, and an aspirin regimen. She recalls, “Of course I had significant weight gain and the moon face.” By 1975, she had developed cataracts, and underwent two surgeries that left her wearing what she referred to as “Coke-bottle glasses.” The long-term effects of steroid treatment were evident again in 1987, when she had a hip replacement for aseptic necrosis. As she looks back on her medical history, she says, “It was very different then. Today, I probably would not have been hospitalized all those times.” Recently, hand stiffness and pain sent her to the new Lupus Center at Magee Women’s Hospital. “What a wonderful thing for us to have in Pittsburgh,” she marvels. “They treat the whole person.” The availability of coordinated care gave her immediate answers and treatment – a considerable contrast to her early experiences with the medical system. Her symptoms were identified as Raynaud’s phenomenon, and a change in medication alleviated the symptoms.
The year 1977 marked the family’s permanent return to Pittsburgh. She sought out local medical care, and once again underwent the diagnosis process. This time, her condition was called “Mixed Connective Tissue Disease.” Kaye was ready for more information and recalled seeing a news article about a lupus organization while she was still living in New York. So, she looked up “lupus” in the phone book and found the fledgling Western Pennsylvania Chapter of the Lupus Foundation of America. Her first contact was with Pat Porch, a fellow lupus patient and one of the founders. She attended a Lupus Luncheon and became involved. Kaye recalls the early meetings, and fondly ticks off the names of the original group: Barbara Vandergrift, Elaine Feith, Gretchen Klindworth, Clara Mulhern, Pat Stewart, and Pat Porch. “We met in the living room of the President’s house. Eventually I became the Recording Secretary for a couple of years.” The patient education and support component at that time was limited to semi-annual “Education Meetings,” where the membership was invited to hear professional speakers on various aspects of lupus. Kaye says, “The meetings were useful. It was good to see others who were doing well. Yet, it was very startling and scary to see those who weren’t, to see what could happen.” The early work of these lupus pioneers has evolved into today’s Lupus Foundation of Pennsylvania. Kaye marvels at the astounding growth and the degree of expertise among the staff and volunteers. Nowadays, ongoing support groups are widely available throughout the state, and at any given time a lupus patient can find information, support, and care.
At about this same time, with her children growing older and more self-sufficient, Kaye looked for part-time work. Though she worked as a high school teacher in California and Montana before her children were born, she did not consider returning to her profession to work full-time. “I signed up to be what they called at the time a Kelly Girl – a temporary administrative worker. I could do a one- or two-week job. I felt more productive and it was good to be paid a few dollars. Once I held a position for two months and ended up with pneumonia.” Volunteering for the lupus foundation was a suitable substitute for paid work. While much has changed over the years, perhaps the issue of lupus and work remains a dilemma. Finding the balance between self-care and productivity continues to be a challenge for every lupus patient, regardless of age. As the lupus foundation grew, Kaye found it harder to get to board meetings and saw that many young, skilled persons were stepping in. Though she acknowledges, “I was not totally dependable,” her skills were valued and appreciated. Again, we see a common struggle. The frustration of knowing that one’s potential is held back by physical limitations can make the lupus patient her own worst critic.
Today, Kaye spends her time, “doing what I want to do.” She jokes, “I say that I’m retired – that is, I’m ‘real-tired!’” Kaye enjoys sewing and quilting and donates much of her work for charitable causes. She is also involved in the Philanthropic Education Organization (PEO) which is an international group devoted to encouraging higher education for girls and women. Education is still part of Kaye’s life too, with computer classes at the local library and seminars sponsored by Duquesne University for seniors. She is currently enrolled in a class designed to help people become their own health care case managers – a worthwhile pursuit for anyone with a chronic illness.
In her role as “lupus sage,” Kaye offers the following advice to new lupus patients: “Continue seeing your doctor; take whatever medication you need; learn and accept your limitations; don’t accept pressure from anyone.” While Kaye endured the hardship of living with lupus in a time when relatively little was known about the disease, she stands as a hopeful testament to the possibility of good living with lupus, especially for those who are now benefiting from decades of positive change and progress.
VERNA McGINLEY Gramma Can’t Polka Anymore
By Jan Grice
In 1972, Verna McGinley was an excited mom-to-be. An avid runner, she felt healthy and strong. As her pregnancy progressed, Verna did not gain much weight. Her son Robert was born early, at less than eight months gestation, and Verna had only gained 10 pounds. There were problems with the delivery, and afterwards, Verna had a rash on her face, neck, and arms. Concerned about infection, the hospital staff refused to let her hold her newborn. No one could offer an explanation for the rash. Three years later, her second son was born prematurely, at six months, and weighed only 3 pounds. Verna had gained only 5 pounds during that pregnancy. Baby Michael came home after several months. As he grew healthier, Verna grew sicker. She was tired and achy, and seemed to grow sick in the sun.
It was not until five or six years later, years filled with ongoing health problems, that Verna was diagnosed with lupus. She had never heard of the disease and did not tell friends that she had it for quite some time. She took many precautions to prevent a flare, avoiding going out during the day, to evade the sun. Even so, she continued to have rashes, hair loss, weight loss, fatigue, and joint pain. She was very “wobbly,” and would find herself swaying and stumbling. One day, a neighbor came to her house and told her that she needed to get help with her drinking problem. Only then did Verna offer an explanation. She says, “It is hard for me to talk about having it. I don’t tell people if I’m not feeling well. I think people don’t want to hear about it. Negative talk just brings you down.”
Although Verna is still reluctant to talk about her personal health, she has become quite an advocate for lupus education. As a young woman, Verna worked as an elementary teacher. She continued to teach on a volunteer basis throughout her married life. She has developed a creative, educational program for children designed to integrate an appreciation of nature with self-esteem issues. She utilizes puppets and costumes, and even dresses like a tree! She is currently working with the Lupus Foundation to adapt her program to include lupus education for children. She has created a coloring book for children affected by lupus, which is available through the foundation. She also does programs for nursing homes, special needs facilities, and for Easter Seals. She tries to show children that everyone and everything is special in some way and that limitations and disabilities are just part of peoples’ special-ness.
Verna’s creative nature has served as a vehicle for her healing. She acknowledges that the most frustrating aspect of lupus is loosing the ability to do things. “You have to mourn each loss, but then you have to learn to adapt,” she says. In raising her sons, Verna had a matter-of-fact approach to her illness. There were many things she could not do, but her sons knew when she was “sleepy” and had to lie down. Over the years, she has learned not to turn away from the emotional pain of losing her functional abilities. She has learned to take time to mourn and then to look for imaginative ways to adjust. Recently, she was giving a presentation to a group of sixth graders and mistakenly used the wrong word – an increasingly prevalent new symptom that her doctors are looking into. “The class began to laugh, and I just laughed along with them. Humor helps,” she says. Her focus on children and those with special needs is a creative way to channel her experiences of years of ill health. “The people I visit at the nursing home always sense when I don’t feel well. I put on a ‘costume’ to face the world, but they know. I only share my experience with others who are having their own problems. I can empathize and share their frustration.”
Verna credits her family with making her life with lupus a little easier. “My sons and husband are very compassionate and understanding.” She is very proud of her sons and credits them with giving her the energy to persevere when the pain and fatigue of lupus interfered with family life. Now, there are new young children in Verna’s life. Her role as “Gramma” has caused her to reflect on her worsening symptoms and how the support of even the littlest family members can help overcome limitations. She composed this reflection, about how:
Gramma Can’t Polka Anymore
Me, a grandmother? Nah, I am too young. I remember Kaitlynn sitting on the floor with me, at age one. I remember me picking her up, and standing. At three, Gramma took Kaitlynn for a walk. We picked up stones, pinecones, and bugs. What a great time. On the way back, I showed her how to skip. She was excited and so was I. At four, Kaitlyn loved music. I put on some old polkas and we danced all over the living room. She stood on my feet and we just flew around the room. When she was five, my lupus got worse. “Gramma can’t lift you; Gramma can’t sit on the floor.” I had to use a little bench to play on the floor with now two grandchildren. I couldn’t even lift one-year old Cameron. A few years later, Gramma had a cane. When I saw that it bothered the children, I got a carved one, with a squirrel on the top and gave it the name, “Nutsy.” I made it talk to them. We took a walk around the block with Nutsy. Kaitlynn exclaimed, “Grams, let’s skip and show Cameron how!” I tried. “Oh, I can’t do it. Gramma’s legs are not listening today.” Kaitlynn was so sad, but Nutsy skipped instead! At seven, Kaitlynn went to Zoo camp. “My Gramma always wears a hat. I want a hat for the zoo, too,” said Kaitlynn. Now we walk and take time to look and listen. We sit and whisper. We show each other nature things. Kaitlynn doesn’t know that I am resting, but I do. Another grandchild, and now I cannot trust myself to carry her. I put Samantha in her stroller to move her from room to room. She will not get to play on the floor with me, to skip, or climb big hills. But I will figure out some way to show her wonderful things. Last week, Kaitlynn wanted me to play records and dance with her. She wanted to polka. I put on the record and she grabbed my hands and began to bounce about. I just could not do it. I couldn’t polka. My eyes teared up as I sat on my rocker. Kaitlynn looked at me and cooed, “Don’t cry, Gramma Verna. We’ll figure out another way to dance.”
The creativity that Verna brings to her classroom presentations shines forth in this lovely story, which captures the spirit of Verna’s approach to life. By looking outward, she activates a flow of support that sustains not only others, but herself as well. It is no wonder her sons are compassionate, a compassion that is already bearing fruit in the next generation – in Kaitlynn, in Cameron, in Samantha, and in soon-to-be-born Colleen!