The 116 Life – Deborah Davis

  Written by: David Daniels Last year, The 116 Life interviewed Deborah Davis, then a 19-year-old Lyme disease patient from Jacksonville, Florida. Readers donated $23,061 to fund her treatment. The 116 Life  wanted to update them on Davis’ life. Deborah Davis, Pt. 2: Completely Helpless, Nearly Hopeless and Astonishingly Unashamed Almost three months have passed since the […]

Tuesday May 19 2015

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Written by: David Daniels

Last year, The 116 Life interviewed Deborah Davis, then a 19-year-old Lyme disease patient from Jacksonville, Florida. Readers donated $23,061 to fund her treatment. The 116 Life  wanted to update them on Davis’ life.

Deborah Davis, Pt. 2: Completely Helpless, Nearly Hopeless and Astonishingly Unashamed

Almost three months have passed since the last day that Deborah Davis walked without help, but this is low on her list of concerns.

“Pretty much every day for me, one of the only goals is to survive,” she said, “whether it be because of the pain or confusion.”

Davis has Lyme disease, as well as three other tick-borne infections that have rendered her bedridden with a lengthy list of overwhelming symptoms. Last August and September, though, Davis grew healthier than she had been since high school. Her dream to earn a medical degree and give back to the Lyme community had once again become a reality.

However, by winter, these aspirations were shelved by a severe relapse. Treatment for Lyme is often at great out-of-pocket expense for the patient. 

Davis’ mother and two siblings also need Lyme treatment, which according to Deborah’s doctor, Shirley Hartman, MD, said is not shocking for a family that camped for weeks each summer in Kentucky. As if this wasn’t burdensome enough, Davis’s father has abandoned them.

Thinking about Davis’s nightmare moved multiple interviewees for this story to tears. The root of those tears, though, was far deeper than sorrow.

Seven years ago, a 13-year-old Davis’s perspective on life changed.

“I saw the contrast between the way I acted in front of people at church and the way I acted at home,” Davis said, “and I saw that it was just a huge façade. I said that I was a Christian. But I realized later that in my heart I hated God. I did not want to obey him.”

That summer, Davis learned that Christians are not defined by their actions.

“Oh, salvation is a heart change,” she said. “I think that’s when the Lord got the wheels turning in my brain: ‘Well, what does my heart look like?’ … I realized that my heart was so dark, and there was no way I could change my heart. Jesus needed to do that.”

Davis entered autumn with a heart change and grew heavily involved in homeless ministry. She enjoyed helping others so much that she aspired to join the medical field.

However, the rest of her body also felt different. A tick had bitten her at a campground that summer. Doctors credited her ensuing fever, headache and fatigue to a minor virus.

Over the next four years, Davis’ symptoms never ceased. Her ability to serve was hindered on another camping trip the summer before her senior year.

She suffered a second tick bite. By September, fatigue had forced her to quit cross country and start taking four-hour naps after school. Doctor’s visits became so common that a nurse joked about re-naming the office after the Davis’.

By December, her attentiveness had declined to the point that she got lost in parking lots. Aching joints had Davis limping from class to class all winter — until sensitivity to light and noise compelled her to quit school in February, when a doctor finally diagnosed her with Lyme. But not all was solved.

“Lyme disease is just as much of a political disease and an economic disease as it is an infectious disease,” Davis said.

If discovered in the first month, antibiotics are proven to cure Lyme disease in a few weeks, according to the Infectious Diseases Society of America (IDSA). Davis’ infection was not treated for over 10 months, which landed her case in uncertain waters with healthcare providers who follow the IDSA party line. Doctors who treat patients for “chronic Lyme disease” can be hauled in front of a medical review board to have their medical licenses revoked.

This has made securing treatment difficult for Davis. She estimated that 90 percent of her doctors have denied that chronic Lyme disease exists, and some of the few who believed Davis still refused to help because they feared her insurance company.

“It was hopelessness,” she said. “After seeing 40, 50, 60 doctors and still not getting the help that I needed, it was just an uphill battle, like am I ever really going to find someone who will help me?”

As Davis searched, her sensitivity to light and sound grew so severe that she needed to wear two pairs of sunglasses, earplugs and headphones in her room.

Finally in Jan. 2014, she found a Lyme literate doctor who would help her, Dr. Michael Chicon, MD. Just as hope began to grow, though, Davis’s father walked out on the family for the second time in her life. Funds shrunk further. 

But in June, Chicon prescribed her a different antibiotic, Vancomycin. Within a week — the first time in over a year — Davis walked and could remove her sunglasses, headphones and earplugs. However, the same month, emergency open-heart surgery forced Chicon into retirement.

While Davis quickly found a new doctor in July, they altered her medication.

Over the next several months, Davis felt healthy enough to serve at Vacation Bible School. She also took classes at Daytona State College to finish her high school degree. Her rapid return to normality, though, was met that fall with a steady decline back to her previous state.

Eventually, Deborah was put back on Vancomycin, but its affect was not the same.

In November, Davis’s new doctor refused to see her any longer because they feared her insurance company. By the time that she found Dr. Shirley Hartman, Davis needed a wheelchair. The day they met, Davis wore the expression that those close to her have come to expect in these grim circumstances.

“When [Deborah] first came in, she had a smile like an angel,” Hartman said. “Most of the people that have the degree of illness that she has are nowhere near as uplifted.” 

With Davis’s father unwilling to support the family, her mother bears all of the financial burden with part-time jobs teaching physical education at an elementary school and cleaning houses.

Deborah, her mother and the two other Davis children all receive Lyme treatment, which in total cost $2,378 out of pocket last month and fluctuates.

They do not receive ideal treatment. Her mother weighs how much they can afford each month and still survive the next. In the past, she has considered selling their house for more medicinal flexibility.

Deborah admitted that her condition has at times driven her close to depression. When her pastor Michael Harsch and others have visited her, though, she would always — as enthusiastically as her fatigue allowed — point them toward what keeps her going.

“I have listened to that kid talk about God’s … Oh man,” Harsch said. 

Choked up, he took four seconds to compose himself. 

“I’ve listened to her accept God’s sovereign will for her life,” Harsch said. “She has stunned me in just her willingness to receive God’s hard hand because it’s certainly been a heavy one. She’s not only been without her health for a couple years — she’s been without her father.

“That’s a lot for any kid. Take either one of these things, and it’d be a huge measure of weight on any kid. She’s enduring both of those at the same time. I’ve listened to her trust in the Lord, and I’ve listened to her trust that God’s will is good and right, even when it’s hard. It’s among the most unique and beautiful examples of trusting the hand of God that I’ve ever been around. She’s got beautiful heart for God.”

“Through all of this, she has never seemed to be afraid of death,” Davis’s best friend, Susanna, said. “She trusted God in all of it. I would come to her, wanting to encourage her and she would turn it around completely and end up encouraging me to trust the Lord in different areas of my life.”

Without a light at the end of the tunnel in sight, the source of fortitude that Davis points toward has not changed.

“The one thing I always go back to whenever things get rough is the gospel and that no matter how far I go into suffering, no matter what happens, that salvation is something that I will always have,” Davis said, “and also that remembering how the Lord didn’t leave me in that sinful state — how he was my hero in that moment and saved my soul, and knowing that he definitely will not leave me in this state while I’m sick as his child — knowing that no matter what happens, that there is always hope because of Christ.”

Davis has reminded herself of this over the past couple of year by reading the Bible, as well as a poem. The first time Davis’s father had left, a friend gave her a book of poems by Martha Snell Nicholson, and Davis identified with one titled “The Thorn” so much that she memorized it.

Wearing two pairs of sunglasses, earplugs and headphones in her unlit room, she recited the poem several times on Harsch’s visits, and he thought it exemplified her circumstances so much that he asked her to share it from the pulpit in Nov. 2014.

“There were times when I came and visited you,” Harsch told Davis in front of the congregation, “and the only source of light in that room was you.”

As Davis fights each day to survive — no matter how helpless or hopeless she feels — she remains unashamed.

“Some people might view these circumstances and this physical burden as a hindrance toward your life to share the gospel,” Harsch said, “and I would say it’s the opposite with Deborah. I think that she’s used it as her platform. This is what she’s in, this is what she has to deal with and she’s using it as a means to describe her confidence, love and trust in the Lord.”

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To support Deborah and her family financially in this time, please visit their YouCaring page.

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