Is joy possible when facing a terminal disease?
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In 2022, I went back to college ready to fulfill my lifelong dream of becoming a nurse. We’d home schooled our four children, and the last child had completed high school. I was enjoying the new freedom.
I excelled in my nursing studies. However, I began tripping frequently and struggled to carry my backpack of textbooks around with me. The diagnosis arrived at the end of the second semester. ALS! How could it be? I was 49 years old at the time.
ALS—also known as Lou Gehrig’s Disease—is a progressive neurodegenerative disease that leads to paralysis and death.
I became numb, scared to let my emotions erupt to the surface.
When I was studying, I would set a timer for 25 minutes of work and then would take a five-minute break. I knew I needed to allow myself to express the darkest of my thoughts and emotions to God. I set the timer for five minutes. For those minutes, I would cry all the heart-wrenching sobs that would come. When the timer sounded, I would gradually choke back the tears and let my breathing return to normal.
It was during one of these sessions of crying to God that the Holy Spirit brought a picture to my mind’s eye.
I saw a wide-eyed little girl with blonde curls at the doctor’s office. I saw the girl sit on her daddy’s lap, clinging to him in terror as the doctor started a painful but critical procedure. The girl couldn’t believe that her daddy wouldn’t protect her from the terrible doctor!
The Lord showed me the father’s eyes brimming with tears as he firmly holds his little girl so the doctor can do the procedure. The father had her best, long-term interests in mind. He stayed with her, tenderly and compassionately, and held her the whole time.
This has been a comfort to me ever since. I believe when we give the Holy Spirit space, he will give us similar forms of consolation.
Is joy possible when facing a terminal disease? If I am to live with indescribable suffering for the rest of my days on earth, is there any joy left for me? I believe the answer is a resounding “Yes!”
The promise of suffering
In John 16:33, Jesus says, “In this world you will have trouble. But take heart! I have overcome the world.”
Jesus suffered while he was here on this earth, enduring the pain of the cross for our benefit!
Paul is another example of great suffering, yet he was joyful! He was beaten, stoned and shipwrecked, according to 2 Corinthians 11:24–25. Yet he said, “We rejoice in our sufferings, knowing that suffering produces endurance,” Romans 5:3 (ESV).
How do we rejoice in our suffering and experience joy despite pain and loss?
Lament
Let’s look at Jesus in the garden of Gethsemane, about to face the cross. He takes three of his closest disciples and asks them to keep watch. Then he prays, “If it is possible, may this cup be taken from me. Yet not as I will, but as you will” (Matthew 26:39).
“An angel from heaven appeared to him and strengthened him. And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground” (Luke 22:43–44).
Jesus lamented, crying out before the Father, allowing himself to fully express his immense anguish. In the book Dark Clouds, Deep Mercy, author Mark Vroegop describes lament as “[giving] a person permission to wrestle with sorrow instead of rushing to end it.”
Jesus lamented, crying out before the Father, allowing himself to fully express his immense anguish.
This is what Jesus did. Instead of rushing to end his sorrow, Jesus broke down before the Father and poured out his sorrows, experiencing them deeply.
When Jesus grieved in Gethsemane, God comforted him, sending an angel to strengthen him. When we acknowledge and grieve our suffering and then surrender it into God’s hands, it leaves room for him to comfort our hearts.
It is helpful to grieve, but it is not helpful to camp out in sorrow and lament forever. Jesus didn’t stay in the garden of Gethsemane; he continued to the cross. He surrendered to God’s will and received his Father’s strength.
Surrender
As we approach Christmas, Mary, Jesus’ mother, presents a wonderful example of a heart of surrender. I’ve pondered Mary’s story a lot through the years—even before my ALS diagnosis—and I see some parallels in my own story.
One of the burdens to bear with ALS is that I don’t have anyone else in my life with the disease. Mary also faced a lonely calling as the mother of God’s Son. Granted, she probably had no inkling that surrendering to God would mean watching her son die a few decades later. I just can’t fathom her watching her firstborn son die that awful, awful death on the cross.
Yet, when the angel came, she wasn’t married. She must have known what could happen to an unwed mother yet she still surrendered to this difficult calling. Even so, she says “I belong to the Lord, body and soul” (Luke 1:38 JB Phillips, emphasis added).
That level of surrender speaks to me. I’m glad that Mary stepped into obedience despite the personal cost.
The Bible says Mary treasured up things in her heart and pondered them: the things the angel said, the visit from the shepherds and—I imagine—the many little details God orchestrated to bring his Son into the world.
I liken this to how we can treasure and ponder God’s words to us—whether his personalized words of comfort, or his word in the Scriptures.
One of the burdens to bear with ALS is that I don’t have anyone else in my life with the disease. Mary also faced a lonely calling as the mother of God’s Son.
Meditate on the Word
Psalm 1 teaches us that the one who meditates on the Word is blessed! Scripture is full of promises, truth and encouragement that God can use as “salve” for our wounded souls.
We need to collect these comforts, truths, and encouragements every day to have the strength to endure. We need to speak Scripture to our fears and doubts. When we are immersed in the Word, we allow God more opportunities to offer his comfort.
It’s like oxygen for our bodies. We may not be able to control our physical health, but we can be fully saturated with the Word of God and be as healthy spiritually as possible—for our own endurance and strength and to be an encouragement to others.
An audio Bible is helpful for listening to Scripture throughout my day. I also have a peaceful scripture app that allows me to meditate on passages in calming ways. Scripture Typer is another helpful tool. It’s a memory app that allows me to hide away God’s promises in my heart, so that when I need them, they are nearby to renew my strength.
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I like to call these my “truth pills” or even sometimes my “lie busters.” Lies often manipulate our emotions. We need to speak truth to them! So, I’ve memorized verses like, “When I am afraid, I will trust in you” (Psalm 56:3 CSB). If it were possible to wear out a verse by reciting it over and over, this one would be!
Thanksgiving and an attitude of gratitude
Thankfulness is a helpful practice, one which God commands us to do. “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God” (Philippians 4:6).
Being thankful is a choice. Not feeling like giving thanks is no excuse not to do so! Just like we teach young children to say thank you, we adults can learn to give thanks even when it’s hard. Practice, practice, practice! We can grow muscles in this area if we do not give up.
Some ways I practice is with little thankfulness exercises or games—like listing the things I am thankful for from A to Z. Another is being thankful for things in the room from the top to the bottom—like the ceiling fan that keeps me cool, to the rug on the floor which keeps my feet warm.
I find it’s important to say why you are thankful for something. This makes your gratefulness deeper than surface level words and closer to the heart of what they mean to you. It can be as simple as, “I’m thankful for the windows, because they let in light and give me a view!” Doing this causes you to count the blessings you still have and take your eyes off what you don’t.
Another exercise is to challenge oneself to give three expressions of gratitude to your partner or caregiver each day. I appreciate receiving these expressions and I know that those around me do too!
Singing and listening to music
Well-chosen songs are useful in several ways. One is to bring scriptures to mind or even help us to memorize them. Another is to remind us of God’s character. A worship song which focuses on God’s character, such as God’s sovereignty or his love, can elevate our thoughts and take our eyes off ourselves and our troubles.
Colossians 3:16 says, “Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts.”
Look to the hope of eternity
There is hope in our present suffering when we look to our eternal future.
“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal” (2 Corinthians 4:17–18).
Paul does not minimize our troubles when he writes this verse, and neither will I. ALS is a horrific disease. However, the eternal glory in store for us far outweighs this present suffering.
One day my body will be restored, and I will spend every day in the presence of my Saviour.
My husband Tony and I like to recall Francis Chan’s illustration of this point: Chan stretched out a long white rope. At the end of the rope was a red piece of tape. The rope represented all of eternity, and the tape represents our time here on earth. In the same way, the days of suffering which seem endless today will be but a blip of time in light of eternity!
We can live our lives in a way that looks to eternity instead of the present. One day my body will be restored, and I will spend every day in the presence of my Saviour. What joy that will be!
I don’t think fixing our eyes on the future is escapism if we balance it with the knowledge that God still has a purpose for us here on earth. Peter says: “Those who suffer according to God’s will should commit themselves to their faithful Creator and continue to do good” (1 Peter 4:19).
I don’t know the plans that God is fulfilling in my life, but I do know that he is shaping me into the person that will dwell with him for all of eternity. I can endure this present suffering and even find meaning while looking to the hope of heaven.
We have this one lifetime to suffer for Jesus, to walk in faith, to lay down our lives as a sacrifice, and to serve the Lord. I want to hear “well done, good and faithful servant” when I reach my eternal home.
James writes “Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him” (James 1:12). Did you hear that? The crown of life is given to those who love the Lord and persevere under trial.
I encourage you to spend time thinking about heaven and reading the many Bible references to heaven. Whet your imagination on how amazing it will be to live in the presence of God—the source of all light and the One who calls the stars by name. To live in a place where no tears or sorrows will be present. Remember that “when we’ve been there ten thousand years ... we’ve no less days to sing God’s praise, than when we first begun!”
This piece was written with assistance from Geralyn Wichers.
