Penetrating the Darkness of a Brutal Diagnosis

 

Imagine you’re a robust 65-year-old, recently retired from 34 years as an elementary teacher. Four days a week at the YMCA, you lift weights and work out on the elliptical. Despite your age, you’re thinking you’re in the best shape of your life!

A little over a year later, though you’re still exercising, you visit a neurologist who, after three tests, abruptly says these life-altering words: “You have ALS.”

Those were the words spoken to Lala Seagle, and heard by her husband, Jerry. They live in Marion, North Carolina. She’s now 69 (March 2019).

 

Lala’s Diagnosis

Despite exceptional energy and strength for her age, more than a year before the diagnosis, Lala began having a slight wheeze when she exhaled. More than one physician attributed it to asthma, which she had as a child, but which had been dormant through adulthood. She took prescribed meds for it. Symptoms were off and on, so Lala didn’t think much of it.

Then a second symptom surfaced: hoarseness that made talking more difficult. An ear, nose, and throat specialist blamed it on “muscle tension dysphonia,” a type of damage to the vocal chords. For over a year, Lala went to speech therapy. The hoarseness diminished, but within two weeks of her release from speech therapy, she started slurring some words. An initial MRI on her brain, and a CT scan of her neck, didn’t reveal any problem. Yet as a precaution, her physician sent her to a neurological specialist in Winston-Salem, North Carolina, who gave her the tests that resulted in the sobering diagnosis.

ALS (Amyotrophic Lateral Sclerosis), better known as “Lou Gerhig’s disease” after a Hall of Fame baseball player who died of it in 1941, is a degenerative disease affecting nerve cells in the brain or spinal chord that fuel muscle tissue. The term “amyotrophic” literally means “no muscle nourishment.” Muscles gradually waste away.

Lala’s  “Bulbar” form of ALS initially affects muscles controlling one’s voice and throat, ultimately resulting in the incapacity to talk or to chew and swallow food. (Currently, Lala cannot speak or eat, but she’s still active in other ways. For example, she still types without difficulty.) Eventually, limbs may lose their movement, and muscles that regulate breathing deteriorate, leading to death. The average life span after an ALS diagnosis is 3-5 years. A small percentage of people (5-10%) live more than a decade. At any given time, about 20,000 persons in the United States have ALS.

 

Lala’s Reaction to the Diagnosis

“Initially, I was convinced the diagnosis was wrong!” Lala says. “I was still in great shape, working out regularly. ‘Ridiculous!’ I concluded. I had  just had a Medicare checkup and was pronounced in excellent condition. In denial, I went for a second opinion in Charlotte. But two days of testing confirmed ALS. That evening in a motel room was my lowest point. I lost it, and emotions spilled out. My life story wasn’t supposed to end like this. It was a bad dream from which I needed to wake up!”

Lala, a Christian from an early age, also describes the effect on her faith, and the hard questions that roiled around inside her. Being a committed Christ-follower, and known as a prayer warrior, didn’t make her immune to the tough test it posed for her relationship with Him.

“How could God allow this to happen?” she wondered. “I wasn’t just someone who believed in God and attended church. I sought to practice my faith and live right. Is this how the Lord was rewarding me? Did I deserve this because I had failed Him in some way?”

Before the second opinion which confirmed ALS, her two grown daughters, grandchildren, and close friends were praying that the initial diagnosis was wrong. Before she communicated the confirmation to them, she thought, “How could I tell my family members and others that their prayers didn’t work? Would the bleak confirmation dash their hopes, and maybe their faith?”

Lala already knew Romans 8:28: “We know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.” But she thought, “Is ALS what the Lord considers good? How can this disease cause anything good to happen?” She knew her faith was at a crossroads. “Was I going to believe all that I had read in the Bible, or not? How could I possibly trust God for this?”

Through the emotional struggle, God’s Spirit used specific means to sustain her and to deepen her faith.

 

Means of Sustenance for Lala

How did Lala navigate the winding, hilly road that led her to acceptance, peace, and an even more intimate walk with the Lord?

 

Rekindling Memories

Though previous trials and tests of faith didn’t match the import of her ALS diagnosis, Lala began reflecting on God’s enablement for past difficulties. “I looked back over my life and the different hard times I had gone through,” Lala says. “Some of the past situations also seemed impossible at the time. Although those circumstances didn’t always turn out the way I thought, God had come up with better solutions, better answers. His responses weren’t always immediate either, but He did answer. Back to my present affliction, I also asked myself, ‘Was I going to abandon my faith now? Had I forgotten all those times I had seen God’s goodness, His power in my life?'”

Allow me (Terry) to expand on Lala’s strategy of looking into her past.  She tapped into a vital biblical principle. Faith for present difficulties stems from cultivating memories of God’s past deeds. Remembering how He sustained us through painful experiences, or how He intervened and answered prayer, fuels trust in God even when the current trial still has us in its grip.

Often in the Old Testament, God reviews His past faithfulness to His chosen people. On a number of occasions, the text says, “I am the God who….,” then He reminds them of a particular miracle or provision. In Psalm 106, God laments Israel’s forgetfulness and cites it as a reason for their rebelliousness. Three times in the chapter the author reiterates, “They did not remember…” or “They quickly forgot His work” (Ps. 106:7, 13, 21). In Psalm 78:1-7 and 145:3-12, Asaph and David encourage adults to tell stories of God’s past faithfulness to the younger generation, using words such as these: “That the generation to come might know….that they should put their confidence in God, and not forget the works of God” (78:6-7), and “One generation shall praise Thy works to another, and shall declare Thy mighty acts” (145:4).

While Jesus and His disciples were crossing the Sea of Galilee, His followers were discussing the fact that they had no bread with them in the boat. Immediately, Jesus reviewed two recent miracles of feeding large multitudes with a few loaves of bread and fish (Mark 8:14-21). They correctly answered His questions about how many loaves and fish remained after everyone had been fed, then He chided them by asking, “Do you not yet see or understand?” During His review lesson, He asked them, “Do you remember when…” before recounting details of the miracles.

Remembering did not erase Lala’s affliction, but it boosted her faith in the One who governed her life. Her strategy of “looking back” reminds me of all the times God’s Spirit has whispered to me, “Terry, do you remember when I….?”

 

Feeding on God’s Word

Meditating on God’s Word also strengthened Lala. A text that kept coming to her mind is Proverbs 3:5-6: “Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.”

Lala pondered: “Do I really trust the Lord, or just say that I do? Even when I don’t understand why, can I trust Him? Could He have a purpose for ALS that my finite mind cannot grasp?” A seed of faith was being incubated inside Lala, one hinging not on circumstances but on the unchangeable attributes of God.

Another meaningful Bible verse for Lala was Jeremiah 29:11. Jeremiah wrote this to the dispersed people of God, during the Babylonian captivity, after the fall of Jerusalem. He wanted to comfort them with a long-range perspective: “I know the plans I have for you,” says the Lord, “plans to prosper you and not to harm you, to give you a future and a hope.” Lala realized that her ultimate hope was not in this life, and despite the horrifying symptoms that might surface in the next few years, nothing could eradicate God’s wonderful long-term plans for her.

Psalm 46:1-2 also offered Lala a vital promise: “God is my refuge and strength, a very present help in trouble. Therefore, we will not fear, though the earth should change, and the mountains slip into the heart of the sea.” ALS was dramatically changing Lala’s landscape, but she knew she would have the comforting presence of the Lord through it all.

 

Relying on Heartfelt Prayer

Lala knew she needed to voice her fears, doubts, and questions during one-on-one conversations with the Lord. Though the intercession of her family and friends had inestimable value for her, she knew she had to grow and strengthen what she called her “trust muscles” in private. Though heartfelt prayer doesn’t require an audible voice, when she could still talk some, verses such as Psalm 40:1-3 prompted her to literally cry out to the Lord: “I waited patiently for the Lord, and He inclined to me, and heard my cry. He brought me up out of the pit of destruction, out of the miry clay; and He set my feet on a rock making my footsteps firm. And He put a new song in my mouth.”

“I turned our downstairs bathroom into a war room,” Lala explains. “That was a quiet, safe place to meet God on my knees every day. I talked things out with Him, acknowledged Him as my Creator, Redeemer, and Father. At first I pleaded for and tried to bargain with Him for healing. But as days rolled by and I kept venting, without a conscious intention in advance, the cries of my heart subtly shifted. I began asking Him for a purpose for my ALS beyond the deepening of my own faith. I started asking Him to use me. I would ask, ‘What can I learn from this? How can I bring You glory through my ALS?'”

I (Terry) believe that, during a crisis, our initial questioning of God and honest venting is a necessary step in His changing the desires of our heart, in shuttling us from complaint and pleas for healing to heartfelt appeals to use the affliction for His sake. We may still plead for His intervention, but an evidence of growth is seen when we also ask Him for a redemptive outcome to the pain.

 

Reading Others’ Perspectives on Suffering

Books or podcasts by Christian leaders complemented the heart-massaging effects of reading God’s Word. Lala applied John Piper’s Don’t Waste Your Cancer to her ALS. Of special significance to Lala has been Joni Eareckson Tada’s A Place of Healing: Wrestling with the Mysteries of Suffering, Pain, and God’s Sovereignty. Other books the Spirit used to minister to her included Sarah Young’s Jesus Calling: Enjoying Peace in His Presence, W. Glyn Evans’ Daily with the King, and Frances Roberts’ Come Away My Beloved.

Lala also obtained audios of the late pastor Ron Dunn’s sermon series, titled “Strange Ministers,” offering biblical perspectives on spiritual formation that aren’t the typical means of grace.* Back in the 1970s, in cassette form, several messages from this series also ministered to me (Terry) through difficult personal and vocational situations.

The most faith-sustaining message in that series for Lala is “The Minister of Circumstances.” Lala reflects on that message by Dunn: “He emphasized that we must go through ‘mountains’ of difficulty to shape us into the image of Christ. It would never happen otherwise. So the ‘mountains’ have a good purpose.  ALS is my mountain! That purpose of Christlikeness doesn’t make things less painful or difficult, but it’s still helpful to know there’s a purpose.”

I (Terry) have often thought it ironic that a verse citing God’s goal of our becoming conformed to the image of His Son (Romans 8:29) is preceded by a verse that says “God causes all things to work together for good to those who love God”(Romans 8:28). During times when I’m hurting, God’s Spirit reminds me that a prerequisite for the Christlikeness of verse 29 may be the “all things” of verse 28.

 

Positive Outcomes from Lala’s ALS

“I admit, there are days when I still complain. Such as when I want to say something to my grandkids: a word to correct a behavior, to explain a thought, to express my love–but I can no longer speak to them with my voice. And there are days when I long to eat slices of juicy, garden-ripened tomatoes on a sandwich with a lot of Duke’s mayonnaise, but I can’t swallow it. But when I am at my lowest, the Holy Spirit whispers, ‘I am enough!‘

“I believe Jesus is just as capable of healing today as He was when He was on earth,” Lala continues. “One way we see the miracles today is through the work of doctors, medicine, and medical research. But just as He did not heal everybody during His time on earth, He does not heal everyone today. I believe that healing comes, but sometimes it is when we go ‘home’ to heaven.

“How does knowing that keep me from being discouraged? Paul wrote that the Holy Spirit ‘renews our minds.’ My thinking is renewed by learning that there are rewards here on earth that are only attainable through suffering. These rewards far outweigh what I have lost. What are these rewards?

“A personal relationship with the Lord that is closer and more satisfying than I have ever experienced before. A reliance on Him instead of my own resources. A security that goes beyond anything here on earth could provide. A desire to share God’s plan of salvation with others, and how a life lived for Him is the most satisfying of all. A heart full of gratitude for His saving grace and His promise of eternal life. An appreciation for each day and special ‘little surprises’ the Lord places there for me. All these things are being opened up for me that I am not sure I would have experienced without my ALS.”

Lala also cites several opportunities the Lord has given for sharing her story and His sustenance of her. “It is ironic that now, with no voice with which to speak, my written words of what Jesus is doing in my life have spread to countless people through the use of technology. My pastor, with my permission, has  used several of my emails to him in his sermons. Due to my posts on Facebook, several other pastors have asked to use elements of my story in their messages. I find that people are interested in what I have to say because I have ALS. I think they are surprised that I have strong faith even in the midst of the struggling. It surprises me sometimes, too. But I know I can handle it only because Jesus is carrying it for me.

“So does all this mean ALS is a blessing for me? It certainly seems like it when I look at the list I just mentioned. Do I still pray for healing? Absolutely–every day! But if it only comes when I get to heaven, I will still have lived a blessed life, a life that gives God all the glory and honor that He deserves.”

 

Pray for Lala and Jerry, and for her two daughters and eight grandchildren. 

 

What part of Lala’s story resonates most with you?  Why?

If you are currently facing some sort of affliction, which means of grace or sustenance from Lala’s story do you most need to apply?

 

*For a reasonable cost, you can obtain CDs of Ron Dunn’s “Strange Ministers” series online (12 sermons). The titles are available as a set or individually. Other titles include, but aren’t limited to, “The Minister of Depression,” “The Minister of Weakness,” and “The Minister of Failure.” If you “google” his name and the title of this sermon series, you’ll find this order information.