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Hope found after ALS diagnosis

EDITOR’S NOTE: Mary and John Harper* served in Central Asia as Southern Baptist representatives through gifts to the Lottie Moon Christmas Offering for International Missions and Cooperative Program, which fund the presence and missions outreach of nearly 5,000 Southern Baptist personnel internationally. Gifts to the Lottie Moon offering are received through local Southern Baptist churches or online at imb.org/offering, where there are resources to promote the offering. This year’s goal is $175 million.(*Name changed)

SPRINGFIELD, Mo. (BP) — Mary Harper’s* eyes well with tears as she plucks rocks from the garden of her family’s home near Springfield, Mo.

The 42-year-old slowly makes her way down a row marked “Spinach,” using her left hand to toss dozens of stones into a trailer made from the bed of an old pickup. Her right arm hangs at her side, emaciated, its fingers slightly contorted — the first victim of a disease that will likely take her life.

Three to five years, she said. That’s the average doctors give most people with amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’s disease.

She fights back tears as she recalls the moment that she and her husband, John*, broke the news to their daughters and turned their family’s world upside down.

“Mom, I don’t want you to die,” Mary remembers her older daughter, Lindsey*, now 15, crying in her arms. Her younger daughter, Jessica*, now 13, also was in tears. John wondered how he’d raise two girls without his best friend.   

It wasn’t supposed to be like this. More than a year ago, the Harpers were living half a world away, sharing Jesus in a spiritually dark corner of Central Asia. They’d spent the past seven years there serving as Southern Baptist representatives. It was an epic journey the small-town couple never imagined they’d take; especially for John, a self-described “hillbilly” whose happy place is either perched in a deer stand or waist deep in a river holding a fishing rod.

Called to missions at 15, John said he surrendered to just about every missions field on the planet, “bawling his eyes out” whenever a missionary spoke in church. He met Mary after high school and they started dating, until John’s calling almost ended their relationship.

“God told me to go, and you can either come with me or not,” he remembers telling Mary one night. “And then I turned around to walk away because it didn’t seem like she was responding.”

Irritated but otherwise unfazed by John’s pig-headed ultimatum, Mary grabbed his arm, spun him around and revealed something she’d never told anyone — at 16, God also had spoken to her about missions. Listening to a missionary from China preach in church one Sunday morning, Mary clearly felt the Lord asking if she would be willing to go overseas one day. She was.

“I gave her a little bitty, thin gold ring with a little grain of sand in there for a diamond,” John said. “I was poor. I ate all my money.” He proposed at Lambert’s restaurant in Sikeston, Mo., home of the famous “throwed rolls.” (Yes, it’s exactly what it sounds like; waiters literally throw hot yeast rolls at customers.) It wasn’t the most romantic gesture, but Mary was too down-to-earth to care about such things — she simply wanted to obey God and follow wherever He led her husband-to-be.

John was prepared to go just about anywhere, except to work with Muslims. He’d heard missionaries speaking about Muslim work and could “summarize all of their testimonies like this: We served for 30 years in such-and-such country, we were about to retire, and the day before we got on the plane somebody finally gave their heart to Christ.” Incredulous, he added, “Dude, I’m not working 30 years to see one person come to faith.”

But the Harpers wouldn’t have to. Within a year of arriving in Central Asia they had already seen their first new believer. Despite God’s graciousness in granting that early victory, the darkness among their people group was deeper than they’d imagined.

There are only a handful of known Christians in the city where the Harpers lived, and two of those are men John personally led to Jesus. Signs of lostness are everywhere, from the minarets towering above the city’s skyline to the shiny prayer beads that swing from the hands of nearly every man who walks the streets. But only people who have invested their lives in a place like this, gone deep in language and culture, can catch glimpses of the true darkness that lurks behind closed doors.

Mary said that darkness holds particular sway over the city’s women. Trapped in their homes by religious and cultural mores, many are uneducated, isolated and abused, viewed as little more than property. Suicide is a common way out. “The preferred method is to pour kerosene on themselves and then light it with a match,” she said. “Many survive for days before they die. I guess they feel they have no other option. They don’t have the hope of Christ.”

But the Harpers know sharing that hope comes at a price.

Masud* was a taxi driver and a fearless evangelist, sharing the Gospel openly in the city’s market. “Angry crowds would gather around him just like Jesus, but nobody laid a hand on him because it wasn’t his time,” John said. Until the day a man shouting “Allahu Akbar!” (God is greatest) emptied an AK-47 into Masud’s body in broad daylight.

“According to the Quran, if a Muslim leaves Islam it’s a death sentence, and anybody who kills them is guaranteed heaven,” John said. “An Islamist group bought the shooter’s family the biggest house in the city and gave them cars, money — he was a hero.”

Masud’s death left a gaping hole in the city’s tiny Christian community. Believers were so afraid to reveal their faith in Christ that many kept it secret, even from their spouse. But there was one believer with the courage to boldly obey the Great Commission — Masud’s ministry partner, Ahsan*.

Though he was targeted by the same men who murdered Masud, Ahsan wouldn’t stop sharing the Gospel. He began to pray that God would send him a new partner, someone who could stand with him as Masud had. The answer came the day he met John Harper.

Introduced by a mutual friend, Ahsan’s family became fast friends with the Harpers, bonded by their deep love of Jesus and determination to share that love with others. They ate meals together, worshipped together, their children played together — and they shared Christ together. John and Ahsan would often go “circuit riding,” hopping from village to village outside the city to visit small pockets of believers, encouraging and discipling them while sharing truth with anyone who would listen.

“Ahsan has a voice like a bullhorn,” John said. He remembers sharing the Gospel in a village where a group of more than 25 men had packed into a home, curious to meet the tall American visitor. Ahsan preached. “I felt like Paul and Silas; I was ready to get saved,” John said, laughing. “The power of the Holy Spirit was there. We saw two or three people from that village come to faith.”

While John and Ahsan shared Christ with the men, Mary and Ahsan’s wife, Iman*, would share with the women. Late-afternoon visits were common and involved lots of hot tea and deep conversation. 

Sometimes their children opened doors to new relationships. One day Jessica came running to the house in tears because a neighborhood boy had thrown a rock at her. She wasn’t hurt, but Mary wanted to make sure the boy’s mother knew what had happened. They ended up becoming friends.

“We would go to her house quite often, have tea and watch her make bread,” Mary said. She used the opportunity to share what the Bible says about Jesus being the “Bread of life.” On another occasion, Mary’s friend was in intense pain following a hysterectomy and hadn’t slept for two days. Laying her hand gently over the incision on her friend’s belly, Mary prayed for healing.

“While I prayed she became very calm, her whole body relaxed and she fell asleep. I slipped my hand from underneath hers and left her to rest,” Mary said. When she went the next afternoon to check on her friend, God had worked a small miracle. “She told me, ‘I actually slept last night for the first time, and I slept well. I told all my friends it’s because you prayed for me,'” Mary recalled. Though her friend hasn’t yet accepted Christ, Mary knows the seeds of the Gospel have been planted.

But spreading the Gospel also meant sacrifice — especially for local believers. About a year after Ahsan and John began sharing Christ together, Ahsan was arrested and thrown in jail. During the week he spent in prison, the Harpers visited Ahsan’s family daily, taking them meals, praying with them and offering encouragement. When he was released, police told Ahsan he should return to Islam. Ahsan told them he had lived in darkness long enough. He also told John it wouldn’t be his last time behind bars.

In July 2011, Ahsan was arrested again. But this was different. He was tortured, nearly to death. For the first three weeks, no one even knew where Ahsan was being held. John finally tracked him to a large prison in the country’s capital. 

“I made him a promise that I will stand with him, I will defend him, I will take care of his family while he is in prison,” John said. “And I meant it.”

But John had no way of knowing he wouldn’t be able to keep that promise.

About a year later, while Ahsan was still in prison, Mary began to notice twitching in her right arm and chest. Doctors first thought she might have a vitamin deficiency and ordered supplements. But things continued to get worse. Mary noticed her arm was not only twitching, it was losing muscle. Everyday tasks like lifting a pot from the stove were becoming difficult.

Eventually, she was sent to a neurologist. It was the first time that she and John heard the letters A-L-S. There was still a glimmer of hope, however — the doctor’s diagnosis wasn’t conclusive. Just in case, he put Mary on a drug that is sometimes used to treat ALS patients. That’s when things started to fall apart.

Within a few weeks Mary’s condition deteriorated rapidly. “I’d get up and make breakfast, and by 10:30, I was ready to take a nap,” Mary said. “I had no energy. My knees felt like Jell-O.” By now the twitching had spread to her legs. John was terrified. “The drug was making her worse. I thought she was going to be dead in a month,” he said.

Then one afternoon John came home to find Jessica in tears. “Daddy, we’re going back to America,” she cried. “Mom is on the phone with the doctor.” Alarmed by the news of Mary’s sudden decline, the International Mission Board’s medical department had ordered the Harpers to return to the United States immediately.

John and Mary shared the news with their team that night. Jill Foster*, a short-term Christian worker from Oklahoma, was with them. “We spent time worshiping and praying,” Jill said. “Eventually John went over into the corner and curled up in a fetal position and started crying. He’s a big man, like 6 foot 3; his nickname in the local language is ‘Mountain.’ And he was just crying out to the Lord, saying things like ‘How am I supposed to raise two girls without their mom?'” A surrogate big sister to the Harpers’ girls, Jill held Lindsey and Jessica as they cried.

With their team’s help, the Harpers managed to pack up seven years’ worth of accumulation in just seven days. They sold what they could and gave away the rest. Jill said nearly half their house went to a refugee camp outside the city.

Throughout the week a constant stream of friends filtered through the Harpers’ home, saying goodbye.

“They were capable of sharing the Good News in the local language better than any other expat in town, and when they left their house, half the city knew them by name,” Jill said. “It was clear that they’d impacted many, many people. They were always with people. They didn’t seek to make some American bubble; they lived like the people — they wore the nationals’ clothes, they ate the nationals’ food, they lived and slept in the nationals’ homes.

“Even at the end I remember John, every time someone came over, he was looking for an opportunity to share truth just one last time.”

On the drive to the airport John wept bitterly, burning through the remaining minutes on his cellphone’s SIM card to make final goodbyes to friends that the family simply hadn’t had time to see. He thought of Ahsan, still in prison, and of the promise he had made to stand by him and watch over his family. He felt as if he were abandoning his friend.

John and Mary didn’t know whether they would ever see their friends — or Central Asia — again. Most of all, they worried about who would take their place. So many had yet to hear the Good News, and with Ahsan in jail and the Harpers gone, their city was losing two of its brightest witnesses. Their hearts broke at the thought that no one was left to carry on their work.

A warm breeze blows across the front porch of the Harpers’ century-old farmhouse in the Missouri countryside. John sits quietly, sipping a glass of ice water. He ponders the “Why did this happen?” question he’s just been asked.

“It didn’t make sense. We were in the beginning of the prime of our ministry,” John says. “We knew the language. We knew the culture. I told Mary it’s not supposed to end this way…. But I know it’s not the end. The Lord has other plans for us.

“He’s not sitting up in heaven saying, ‘Oh no. I didn’t see this coming. What am I going to do now? Where’s plan B?’ God foreordained Mary’s ALS.”

John said he’s never asked why — and he’s never doubted God’s love.

“The very first morning I woke up after we knew that Mary had ALS, I was reading Romans 5:8 and it says, ‘But God proves His own love for us in that while we were still sinners, Christ died for us.’ And God just screamed in my heart, ‘Don’t you ever doubt my love for you….

“I’ve never asked God, ‘Why did you do this?’ because He is going to give me the same answer that He gave Job. He’s going to say, ‘Where were you when I created the heavens and the earth?’ I don’t have an answer for that. So I’m just going to try to live by faith.”

“I’m not going to say it’s easy…. I wish it was me instead of her.”

Doctors confirmed Mary’s ALS diagnosis in January 2013. There is no cure or treatment. Most patients live three to five years, though some have survived for 10 or more.

“Absolutely I pray and ask God to heal her. I need her,” John said. “When you’ve been married for 20 years, you kind of become each other. She’s a little bit of me and I’m a little bit of her. I don’t just love my wife, I like her; I like doing stuff with her.”

But if healing doesn’t happen, the Harpers are planning for the future. They’ve already remodeled their bathroom to make it wheelchair accessible. Mary is teaching Lindsey and Jessica to cook, do laundry and help run the house. Mary can still do most things for herself. The girls do help braid and brush her hair, and John rubs coconut oil into her back and arms. It’s part of a supplement regimen called the “Deanna Protocol” that has helped some ALS patients slow the disease’s progression.

Mary said there are days when the potential eventualities of ALS hit her hard, like things she might miss doing with her daughters. In those moments, Mary leans on John’s faith.

“Faith is one of his giftings,” she said. “Whatever it is — financial situations, ministry problems — God is going to see us through. He just knows it, believes it.”

“I don’t know what the end is going to be,” Mary said. “Right now I need to focus on teaching my girls and making the most of the time that I have with them…. My hope is in Christ. I know whatever the end is, I’ll be in heaven.” 
*Names have been changed for security reasons.
Don Graham is a senior writer for the International Mission Board. Get Baptist Press headlines and breaking news on Twitter (@BaptistPress), Facebook (Facebook.com/BaptistPress) and in your email (baptistpress.com/SubscribeBP.asp).

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  • Don Graham