No Diagnosis? Tell Linda Where It Hurts

In 1975, Linda Lee Harry, then a microbiologist at a Portland, Ore., hospital, began experiencing double vision, chronic headaches, skin rashes and exhaustion, which gradually escalated to tremors and blackouts.

It took 18 months and consultations with numerous doctors to arrive at a diagnosis: Her immune system had been destroyed as a result of chemical poisoning caused by continuing exposure to her workplace disinfectant. The disinfectant had been contaminated with dioxin, the same neurotoxin used in Agent Orange. Harry spent most of the next five years in a sterilized “bubble” in Dallas, finally becoming well enough to live in her parents’ Hermosa Beach home. In 1984 she settled in Solvang.

In that small Santa Ynez Valley town, Harry, frustrated by her experience, founded an enterprise created to ensure that no other family would have to endure such torturous uncertainty awaiting a diagnosis. Located in a converted garage behind her house, Direct Link for the disABLED has for the past 12 years disseminated information about health conditions, rare disorders and disabilities to anyone in need of such knowledge.

Using a computer database connected to 15,000 agencies throughout the United States, Direct Link provides the latest medical information on 7,000 diagnoses, along with lists of relevant organizations, medical glossaries, financial and other resources and medical journal articles to be shared with physicians. The nation’s only such source, its volunteer staff receives about 50 calls a day from throughout the country, as well as from Canada and overseas. The program can also be reached via fax, e-mail and an Internet home page.

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Harry, now 45, conceived Direct Link after helping quadriplegic artist Joni Eareckson Tada with her mail. “I thought, ‘We’re giving these people a lot of kindness and help and understanding, but we’re not giving them information,’ ” she recalls. “At a time when your energy, time and finances are at an all-time low, you’re tossed in a world where you don’t know what they’re saying, you don’t know how to get answers.”

Most requests are fulfilled within one hour. Information is culled from packets that line the main office and customized for the recipient. Though statistics show that the national standard for resource referral calls is 3 1/2 minutes, an average telephone call to Direct Link takes 37 minutes.

“We don’t just give people three resources,” says Harry, who handles unpaid administrative, grant writing and software programming duties on days she feels up to it. “We want to be educators, teach you how to help yourself. We will tell you what to expect from the organizations we refer you to, what questions to ask. You need to be your own best advocate, and you can’t be if you don’t know.”

Direct Link also provides information about housing, transportation, financial issues, nursing care and legal and recreational concerns. Referrals and phone time are free. Two years ago, to offset the organization’s dire financial situation, Harry began charging $32 for mailed packets.

Sometimes, Direct Link’s greatest contribution is simply to lend a supportive ear. “I listened to a father cry this morning,” Harry says. “His 16-month-old baby is dying of a brain tumor. I referred him to a group of families, primarily fathers, whose babies are dying. He was really glad--he said, ‘You can talk to a man about some things you can’t talk to your wife about.’ ”

The enterprise’s name is designed to convey a message. Harry chose to spell it “disABLED” because, she says, “I don’t view myself as disabled. We have different abilities.” In the past six years the program has trained 22 volunteers with such conditions as spina bifida and learning disabilities and helped them enter or return to the paying workplace.

Chris Beebe, so grateful for Direct Link’s help that she became a board member, has a daughter, now 12, with a rare form of autism. “Direct Link sent me in one day what it had taken me eight years to gather,” says Beebe, a researcher for a Los Angeles think tank before she moved to Solvang, where she discovered the program.

“Every week, people call with symptoms so bizarre they’ve been told by doctors it’s all in their heads,” Beebe says. “Linda has all the information. She’s never made a diagnosis, but she gets it right.”

Adds Karen Vroman, information specialist for the National Easter Seals Society in Chicago, “I appreciate the excellent services Linda and her staff have provided to us and our affiliates across the country, researching requests that we’re unable to respond to.”

Harry hopes to afford a larger home for Direct Link, to be even more effective. “I feel very clearly that God allowed this in my life so I could help other people,” she says. “This sounds callous, but when I worked with sick people every day, I didn’t care. Now I have one of the more limiting diseases, and God has opened the world to me.”

(Direct Link’s number is [805] 688-1603.)