Facing lupus with spiritual life supports

National Catholic Reporter, Nov 19, 2004 by Arthur Jones

Maureen Pratt faces a debilitating illness with two spiritual life supports: the lingering effects of dedicated parish ministry, and a new wrinkle on gardening.

Parish ministry is rarely described or prescribed as a medical benefit. But the connection between a spiritually fulfilling commitment and the capacity to deal realistically with serious illness is something Pratt cheerfully addresses.

Pratt lives the music of her 13 years as a Gospel choir director; it emboldens her as she copes with the debilitating effects of lupus. Hers is a life that requires she be sheltered from sunlight, try new medicines, and work at her exercise machine to try to forestall the disease's ravages.

The ministerial experience freed her up. "I still keep in touch with people in the church, still play my Gospel records. I still feel very much I'm part of that community. I can still sing," she said.

The connection between health and the garden is better known--though not the way Pratt does it. Because she can't risk prolonged exposure to sunlight, she has adapted gardening to lupus by using shade-loving plants while working in low light conditions. California Gardener magazine just awarded her first prize for innovation.

These are difficult times for the former hard-charging Notre Dame-educated super achiever, the highly paid on-the-road recruiter and manager for a consulting arm of Deloitte & Touche, now living on disability. Hers was a high stress job. And when Pratt initially consulted doctors about her increasing health problems--rapid hair loss, extreme limb numbing, hands that couldn't hold things, constant rashes, brain fog and memory loss--they invariably pointed to stress as the cause.

But Pratt knew her body. It was more than stress.

"Looking back," she said, "I think I've actually had lupus all my life. Before I was 18 years old I'd had pneumonia 13 times, received extreme unction many times, and was hospitalized with other health problems as a young adult."

In the mid-1990s, Pratt, by then in her mid-30s, was in a dermatologist's office listening to the usual litany of medical diagnoses when--"and I attribute this voice to God coming through me--I heard myself saying, 'Please take some blood work, I feel there's something else going on.'

"The dermatologist said, 'No, no, no, no. No need to do that.'

"'Humor me,' I said."

At that time Pratt was on a short-term leave of absence. She returned to her job while the blood work was being processed. Back in the doctor's office a month later, "she said everything looked fine except I had a rather high ANA, antinuclear antibody test. She said I probably sometime might want to see a rheumatologist.

"'Sometime? This week,' I said."

Pratt, who has written a book on lupus (Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life, New American Library, 2002), said there are only 3,000 rheumatologists in United States to treat the millions of people with rheumatological disorders. "Their schedules are packed," she said. "I called one right near where I lived and she had an opening for next day, and concluded I probably had lupus or cousin of lupus." More tests.

The rheumatologist told Pratt that her lupus "was severe and it was trying to kill me, and if I didn't do something about it, it would. My reaction--I didn't know what lupus was--was, 'OK, you'll give me a pill and I'll be fme.'"

Only then did Pratt begin to learn that lupus is not like that.

Lupus is an autoimmune disease where the body turns on itself and begins to destroy its own organs (see box, Page 6).

Pratt at that time had been director St. Eugene's Gospel choir in South Central Los Angeles for 13 years. Now hit with the diagnosis, "I certainly relied on God and faith--not so much in terms of asking for this cup to pass, but asking for clarity, 'Please show me what I'm supposed to do.'"

She has never, she said, asked God, "Why me?" Rather, she worked toward a mindset of "OK, this is something I have to deal with. How do I deal with it?"

Told there was no cure, the question became how to cope.

She learned that until five to 10 years earlier the prognosis was 50 percent of lupus patients were dead within 10 years. The study of lupus has advanced somewhat. Drugs developed for other diseases showed positive benefits--but the side effects were severe. "Basically," Pratt said, "treating lupus is treating the symptoms.

"I sort of said, 'OK, God, I know you have sometimes a wacky sense of humor--but my prayers were for guidance: Help me to see what best I can do."

To cope with her sensitivity to sunlight, "living in Southern California I revamped the wardrobe. Hats." Her hair fell out; she wore wigs for five years. She felt unattractive to others. With lupus came loss of friends--"people close to me. I was so fatigued my ability to carry on a conversation was severely compromised." She couldn't go to a crowded movie theater because the immuno-supressive drugs she was taking lowered her resistance to communicable disease.