Paula Lyles is a conservative Christian wife and mother who loved her friends, her church and her family’s home in Ohio. But last fall, she packed up and moved to the Promised Land of Colorado Springs.
“God said, ‘It’s time for you to go, and I will be with you,’” says Lyles.
She didn’t come to the city nestled at the foot of Pikes Peak for the mountains and sunshine. She didn’t move across the country to work for Focus on the Family or any of the dozens of major ministries that have inspired some to dub the city “the Vatican of evangelicalism.”
She came for marijuana.
Lyles crossed the country to gain legal access to a unique form of medical marijuana called Charlotte’s Web that has given new life to her 18-year-old daughter Jordan, who suffers from Dravet syndrome, a severe and sometimes fatal form of epilepsy.
She’s not alone. Lyle’s family is just one of more than 100 that have relocated to Colorado to treat their children with Charlotte’s Web. They include Muslims, Buddhists, and “nones” with no religious affiliation.
Most are Christian families, and dozens of these pot pilgrims have settled in the Springs, where they have formed a tight-knit community based around their shared suffering and hope. Some of the moms recently started a weekly Bible study.
“We are a strong group of Christians out here together,” says Lyles. “We are a family of faith, and it is beautiful!”
These parents didn’t head to Colorado to smoke pot themselves, and most oppose legalizing recreational marijuana. And few had given much thought to medical marijuana before hearing stories about Charlotte’s Web.
“[P]eople need to see that God made this plant, just like any other plant, to be used for His glory.”
They’ve changed their tune since seeing for themselves how marijuana dramatically relieved their children’s suffering after years of failed therapies, expensive pharmaceuticals with destructive side effects, and gruesome surgeries that carved up their children’s brains.
Colorado’s Christian marijuana moms are enthusiastic evangelists for the benefits of medical marijuana, which remains illegal in most states. And they are praying that fellow evangelicals join them in overturning outmoded Justice Department regulations that classify marijuana alongside heroin, LSD, ecstasy and other Schedule I drugs that have “no currently accepted medical use and a high potential for abuse.”
“I am one of the most straitlaced people you’ve ever met,” says Lyles. “I dislike the smell of marijuana smoke. But people need to see that God made this plant, just like any other plant, to be used for His glory. It is only humans that turn the good things God created into something bad.”
“Seizurepaloozas” and the new normal
Lyles was serving as the children’s nursery director at Bay Presbyterian Church, a 3,000-member evangelical congregation in Bay Village, Ohio, when her life was suddenly upended.
Jordan was still napping in her crib upstairs. When Lyles heard Jordan cry out and then go silent, she went up to check, expecting to find a peaceful, sleeping baby. Instead, she saw Jordan writhing in the violent throes of her first grand mal seizure.
“Her face was turning blue. She was convulsing. She was foaming at the mouth and gasping for air. I grabbed her out of her crib, yelled to my husband to call 911, and ran to the curb in front of our house, where I held Jordan until the paramedics arrived.”
Seizures, 911 calls, and emergency room visits and hospitalizations became the “the new normal.” Expensive medicines did little to help but unleashed powerful side effects that slowed Jordan’s learning and made normal childhood activities impossible.
Lyles quit her job so she could be with Jordan every second of the day and night — eating, sleeping, bathing, and going to the bathroom with her.
Then there were the “seizurepalooza” episodes, like the night Jordan had more than 70 grand mal seizures in 12-hours.
One day when Jordan was two years old, she packed a few items in her small Pocahontas suitcase and walked toward the front door. When asked where she was going, Jordan said she was going to the driveway to wait for Jesus to come take her to her real home in heaven.
Just drugs, or something good that God has made?
In 2012, Lyles read a conversation thread on a website for Dravet families claiming that medical marijuana could help, but she immediately rejected the idea of giving her daughter the drug.
The medicine has totally changed Jordan’s life. She has 85% fewer seizures, has been gaining weight, talking more, and enjoying life more.
“My dad was a major general in the Army,” she said. “I grew up in a very conservative home. Drugs were bad. Smoking was bad. Drinking was bad. Marijuana was something potheads used.”
But Lyles sensed God moving her to reconsider. “He put it on my heart to look into this.” Friends offered to provide her with illicit marijuana, but Lyles was concerned about consequences.
“The only thing worse than seeing Jordan seize would be not being able to see her at all because I was in prison.”
Last fall, Lyles decided to “trust God” and “step out in faith,” leaving behind her husband of 28 years, her older daughter, her beloved home near Lake Erie, her extended family and friends, and her faithful church community to move to Colorado.
A church friend shared a verse from Matthew 18 that confirmed the decision: “If a man owns a hundred sheep, and one of them wanders away, will he not leave the ninety-nine on the hills and go to look for the one that wandered off?”
Lyles felt she was “stepping off a cliff,” but soon after she arrived in Colorado Springs last October 3, she stepped into a close-knit community of fellow pilgrims gathered here for Charlotte’s Web.
Named after Charlotte Figi, the first epileptic child to experience its benefits, the medicine is a marijuana oil which contains little of the THC that gives recreational marijuana its “buzz” but is rich in Cannabidiol, a chemical compound that has shown promise in a variety of medical applications.
The plants used to make the Charlotte’s Web oil were cultivated by Jesse Stanley, one of six Stanley siblings — all committed Christians — who own and operate businesses that breed, grow, process, and sell medical marijuana. (See OnFaith’s “Marijuana Ministry” companion story on the Stanley family.)
The oil, which looks like motor oil but smells like plants, is made available to patients through the Stanleys’ charitable organization, Realm of Caring, which operates under the same 501(c)3 non-profit designation that many Colorado Springs evangelical ministries use.
Twice a day, Lyles uses a small plastic syringe to squirt a few drops of the oil (less than one milliliter per dose) into Jordan’s mouth. The medicine has totally changed Jordan’s life. She has 85% fewer seizures, has been gaining weight, talking more, and enjoying life more.
For now, Lyles and Jordan consider Colorado her home. Meanwhile, Lyles writes to Ohio’s state representatives and supports the work of Ohio Right Group, which is seeking to place the Ohio Cannabis Rights Act on the 2014 ballot. The act would allow medical, therapeutic and industrial uses of marijuana.
“It is all about educating, talking to people, clearing up misconceptions and allowing people to be informed on what medical cannabis can do,” she says. “I was uninformed on the subject, but now I see the truth for myself. Medical cannabis is saving lives using something good that God made!”
Finding a new home
Dara Lightle’s wild decade of “looking for love in all the wrong places” made her all too familiar with the perils of recreational drugging and drinking. That’s why she “scoffed” when people wanting to help her daughter Madeleine sent her videos about medical marijuana.
“I thought, So you want me to give my child pot? That’s really ridiculous!”
Lightle says she ran away from an abusive home at age 14. When she was 24, her boyfriend Aaron invited her to McLean Bible Church, an evangelical, multi-campus megachurch in Vienna, Virginia. Soon, she invited Jesus into her life and prayed to him to help her go 100% clean from drugs and alcohol.
Dara and Aaron got married. Life was good until her pregnancy got complicated. Madeleine experienced a stroke in utero and was born 11 weeks premature with cerebral palsy. The endless cycle of epileptic seizures and medical procedures came later.
“The focus of my whole life was keeping her well, and when that didn’t work, life was just sad.”
Then a close missionary friend posted a web link to Sanjay Gupta’s “Weed” program on CNN. The show touted the healing properties of Charlotte’s Web.
“I really trusted this woman’s spiritual walk,” says Lightle, “so when I saw she was recommending it, I thought, Wow, I should watch this!”
Last summer, Lightle was weighing her options. Giving Madeleine more pharmaceutical medications didn’t offer much hope. She didn’t want to subject her daughter to additional brain surgery. As for medical marijuana? That was out of the question.
“Because of my past drug use, and I saw things through that lens.”
She prayed an angry prayer to God: ”Fine. You are going to do what you want to do anyway, so what’s the use of me praying? I don’t have any say in this any longer.”
Struggling to discern what would be best for Madeleine, Lightle spiraled downward into a deep depression. She had herself committed to a hospital psychiatric ward so she wouldn’t fall back into drugs and alcohol. When the crisis calmed, she received the divine guidance she had been seeking.
“I was praying about what to do, and I knew God was saying, ‘Go.’ And when God says go, you obey. It was like a fire was lit underneath me. There was no turning back.”
Within three weeks, Lightle and Madeleine were in their new home in Colorado Springs. Lightle also brought along her mother, who volunteers at Focus on the Family.
Lightle believes Colorado Springs is where God wants her, and Aaron is on his way as soon as he sells the family’s home and wraps up affairs.
But finding a church in this city of churches and other ministries was difficult. After Lightle introduced herself and Madeleine to the pastor at one church (a church she prefers not to name), the pastor told “mean stories” about medical marijuana and “stoners” during his next two weekly sermons, eliciting laughter from the congregation.
Thankfully, Lightle found a warmer welcome at Woodmen Valley Chapel, a dual-campus evangelical congregation with weekly attendance of 5,700. A spokesman succinctly summarized the megachurch’s position.
“Woodmen Valley Chapel welcomes all people with disabilities, and Woodmen Valley Chapel does not endorse any type of medical treatment,” said Paul Rude, pastor of the church’s Impact Ministries, which includes ministries for special needs families and community outreach.
Lightle stands 100% behind Charlotte’s Web, which has dramatically improved Madeleine’s quality of life.
“She had so many bad days she wouldn’t even remember having good days. Now her short-term memory is improving and she is reading for the first time and enjoying reading. This is huge.”
But Lightle is understandably worried about recreational marijuana laws like the ones passed by voters in Colorado and Washington state.
“I do not believe marijuana should be legal recreationally. And part of me does not even understand why alcohol and cigarettes are legally available. But if I have to sit there and compare which of the three should be legal, I would pick marijuana.”
“God’s calling…us to speak boldly about medical marijuana”
“Why?” is the question Job repeatedly asked in the Old Testament book about human suffering that bears his name. It’s a question former missionaries Francis and Cristi Bundukamara have been asking for years.
The couple served with Mission to the World, an outreach of the Presbyterian Church on America, ministering to street children in Mexico and serving as medical missionaries in Peru. But their good works didn’t save them from tragedy. As they’ve seen time and time again, bad things happen to devout people.
The couple adopted five children, but one died and another was imprisoned. Their two birth children, Reggie and Miah, are afflicted with dentatorubral-pallidoluysian atrophy, or DRPLA, a progressive brain disorder that causes seizures, involuntary spasms and jerks, falling episodes, and a variety of emotional and mental problems.
Francis passed DRPLA on to his children before he knew he had the disease himself. “I gave that to them,” says Francis. “Why?”
“When I prayed to God, I asked him about this. I said: We were missionaries. We served you. With fed the poor and hungry and gave to those in need. I did anything you asked of me. Now this. Why me, Lord? Why me?”
Last fall, after they heard about Realm of Caring and Charlotte’s Web on CNN, it seemed God might be answering the couple’s prayers.
“Our faith had been shaken so much that we were scared to be hopeful,” said Cristi. But Francis had hope. He quit praying, “Why me?” and started praying a new prayer: “Lord, if we are to go to Colorado, open the door for us to go.”
Doors opened. They received financial gifts from their friends at Pinelands Presbyterian Church, from staff and students at Redland Christian Academy, the Christian school their children attended, and from complete strangers who had heard about their plight. And nearly two-dozen volunteers helped them pack, paint and prepare their Miami house for rental.
Francis didn’t want to send Cristi and the kids to Colorado alone, so he quit his job teaching special education and coaching football at South Dade Senior High School in Miami, Florida. “There were no ifs, ands or buts,” he says. “I’m the head of the family, and I don’t want to see this family split,” he says.
Cristi, a lieutenant in the Naval Reserves, quit her job as a nursing professor at Miami Dade College.
As the family started their driving west, they felt like the Job years were over. Now they felt more like Noah.
“God didn’t just tell Noah to go onto the ark,” says Francis. “He went with him. And we believe God went with us when we got in our car and left behind everything we knew.”
The family arrived in Colorado Springs November 3. Charlotte’s Web has helped Miah decrease her seizure medication, which corrected her hypothyroidism, allowing her to gain weight. Reggie’s seizures have been dramatically reduced.
But that doesn’t mean everything’s perfect. It has been hard to find a church, and Francis says people at one church they were attending kicked them out after Reggie became overly excited during the worship period.
“Reggie loves praise music, and he was worshipping in his own way,” says Francis. “I guess they thought that was a disruption!”
The family misses their friends, their home, their children and their granddaughters, but they can’t go back to Florida as long as they treat their kids with medical marijuana. They hope Floridians will vote this November to allow medical marijuana in the state.
“We are passionate about God’s calling to us to speak boldly about medical marijuana,” says Cristi. “But for now, every day is a step of faith.”
Photos by Lisa Anderson.