Trusting God in the Midst of a Devastating Diagnosis
By Shelly Powell
As a young girl I remember my grandfather, E.L. Minchin (who was then the General Conference youth director), leading out in songs for camp meetings or even our family reunions. One of his favorites was, "He Lives." Even today I can hear his clear voice, with a strong Australian accent, directing the audience. He would hold out the last "He Lives" in the chorus for an extended length of time, until you were almost out of breath. I am a 4th generation Adventist on my mom's side and 5th generation on my dad's side. My grandmother was even held by Ellen White as a baby. It's a rich legacy. I grew up knowing that He Lives.
In many ways, I had an idyllic childhood where I always felt loved and cherished. My memories of growing up in a conservative home with my two brothers and a sister were happy ones. Even though my dad, Ronald Neall, was a busy pastor he always prioritized time with his family. We embraced and lived out the Adventist lifestyle and message.
After academy, while studying nursing at Southern College (now SAU), I met the man of my dreams, Kevin Powell, a young theology major. We were happily married the day after graduation. Once Kevin finished seminary at Andrews University, we began our ministry in Florida and started our family with a beautiful daughter and later a handsome son. We were so abundantly blessed.
Both my husband and I grew up being "good kids.” When you're a “good kid” it's easy to compare yourself with others and come out looking pretty good. While Kevin was pastoring our first church in Hollywood, Florida we came to realize our sinfulness for the first time, and our desperate need of a Savior. It was such a beautiful time of revival in our hearts and in our church family. Everything seemed new and Jesus truly became our personal Savior.
Soon after this experience we moved to pastor in Virginia. We bought a small home in a picturesque country setting and our family was blessed with another precious daughter and sweet son. We homeschooled our four children, planted a large garden, raised animals including donkeys and birds and enjoyed a fulfilling ministry. Life was good and sweet.
After 14 years in Virginia, God called us to a self-supporting academy and college in Arkansas, Ouachita Hills. It was a step of faith turning away from the security and benefits of being a denominational employee, but it has proved to be a blessed and growing time for our family.
In 2019, while on a mission trip to Jamaica to do some family life meetings, I started experiencing some strange symptoms. We noticed some slight slurring of my speech and difficulty getting my words out. It seemed so random; I'd always been so healthy. However, upon returning home we conferred with several doctors who urged immediate testing and an appointment with a neurologist.
After initial testing in the E.R. to rule out a stroke and MS, I went to the neurologist appointment feeling confident that I was fine, and they wouldn't find anything. However, I could sense the doctor's rising concern when doing a nerve study. My eyes immediately filled with tears when she said, "I think there's a good possibility you have ALS." I didn't know much about ALS except from a few internet searches and some foggy descriptions in nursing school, but I knew it wasn't good.
I was in a daze on the 2-hour drive home from my appointment, but a few questions struggled to the surface of my benumbed thoughts. Could I really have a life threatening illness? Could this really be happening? I'm healthy! I've lived an active Adventist lifestyle. However, my main thought was, "I want to be anointed and surrender this diagnosis and my future to the Lord."
The very next day, a Sabbath and our youngest son's 13th birthday, we invited our pastor, the elders and a few close friends to our home for a touching anointing service. We felt the Holy Spirit and I surrendered my future to Jesus.
Then followed several weeks of scans, blood work and studies which all proved to be negative. A few weeks later, when my devastating diagnosis of ALS was confirmed, my doctor also left the exam room in tears. This was obviously a dreaded diagnosis! Hence began a new unchartered, unwanted, difficult journey.
ALS, or Amyotropic Lateral Sclerosis, also known as Lou Gehrig's disease, affects the motor neurons. They slowly die or stop firing so eventually you can't use your muscles. Most often symptoms start with slight weakness in a hand or foot (limb onset), but in my case the weakness began with my speech (bulbar onset). The weakness progresses, eventually affecting your diaphragm and breathing muscles. It is a rare, multi-faceted and complicated disease with no specific cause or cure, affecting around 5 people in 100,000. Textbooks say that the average life expectancy (without a ventilator) is 3-5 years and is always fatal. It's definitely an exclusive club no one wants to join!
A couple weeks after my diagnosis we attended a Healing ALS conference in Salt Lake City, Utah. It was encouraging to hear the testimony of a handful of people who had actually reversed their ALS symptoms. It became my focus and study to cooperate with God's healing methods and to do everything I could to improve my health and possibly my outcome. I did a multitude of therapies and took numerous supplements and even a couple "miracle cures.” I was doing everything I knew to do, plus some, and often prayed for healing. I knew God was able! Where was my miracle?
One day, probably a year into this journey, I was doing dishes with Kevin, and we were discussing some of my symptoms. I said, "Some of these symptoms aren't classic for ALS, perhaps I have something else! But, if I don't have ALS, what do I have? " Without missing a beat, he stopped washing the dish in his hand, looked at me lovingly and said, "My dear, you have a loving Savior who will see us through whatever it is." He didn't realize he had just created our new definition of ALS: A Loving Savior. I knew whatever lay ahead, my loving Savior was by our side.
Progression of symptoms seemed fairly slow at first mainly affecting my speech and swallowing. Life pretty much continued as usual. I was still able to cook and take care of my family. Then in December 2021, I tripped on our dog's leash and fell straight back, hitting my head on the sidewalk. This incident seemed to greatly speed up my symptoms; the weakness started affecting my limbs and breathing. Five months later (May of 2022) I got a tracheostomy and ventilator.
So, how am I now? My mind is sharp, but I'm basically a prisoner within my own body. I can't swallow saliva, so suctioning drool is a constant battle. At this point I can still move a couple fingers, raise my eyebrows and smile (although my smile is a little lopsided). I write, communicate with my family, share testimonies like this, and interact with the world with my eyes through an “eyegaze” computer, one letter at a time. My dear family does everything for me, from putting me on the bedpan to giving me my meals through a feeding tube and suctioning my trach. I guess from a human perspective, I'm in pretty sad shape.
So where is God in all this? I know He could heal me in an instant with one touch if He chose to. Where is He when we've tried so hard to cooperate with His healing principles and prayed so many prayers for healing? I may never fully understand the answers to these lingering questions. But I do know I serve a God who loves me and means to do me well. His ways are above my ways.
There are times when the burden of living with ALS is overwhelming. Times when I have to ask Him to carry me moment by moment and the tears flow easily. There are so many simple pleasures I miss, such as eating pizza with my family or walking down our graveled road to the river. I get claustrophobic, sore, and uncomfortable, but I'm thankful I'm not in pain.
My life is difficult but not terrible. I am so thankful for the blessings I enjoy and all the support I receive from caring friends and family. I still get a lot of joy and fulfillment in life, like seeing my five month old, first grandbaby smile and coo. Who said you have to walk and talk to have fulfilled life? As it says in 2 Corinthians 4:16-17, "Therefore we do not lose heart. Even though our outward body is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for moment, is working for us a far more exceeding and eternal weight of glory." Praise Him!
I know God still a plan for me. In many ways I feel like a princess given a special assignment. We're told that being called to suffer with Christ is a weighty trust and high calling. I pray I can glorify Him in whatever lies ahead. One of my favorite quotes inspires me that God can still use me even in my affliction.
"Patience as well as courage has its victories. By meekness under trial, no less than by boldness in enterprise, souls may be won to Christ. The Christian who manifests patience and cheerfulness under bereavement and suffering, who meets even death itself with the peace and calmness of an unwavering faith, may accomplish for the gospel more than he could have effected by a long life of faithful labor. Often when the servant of God is withdrawn from active duty, the mysterious providence which our shortsighted vision would lament is designed by God to accomplish a work that otherwise would never have been done. Let not the follower of Christ think, when he is no longer able to labor openly and actively for God and His truth, that he has no service to render, no reward to secure. Christ's true witnesses are never laid aside. In health and sickness, in life and death, God uses them still” (Acts of the Apostles, 465).
My desire is to bless and minister to as many as I can, for as long as I can. I have been blogging many of my experiences since diagnosis and recently my son-in-law started a YouTube channel to share shorts from some videos I took before I lost my voice as well as some recent content.
There's a better day coming soon! I can trust that He hears my prayers and that I will be healed, if not now, at His second coming. I may not be able to communicate easily with others, but my communication with and dependence on my loving Savior has only gotten better. He hears my every prayer! The same God who has faithfully led me in the past is with me now and will guide my future. "But as for me, I trust in you, oh Lord; I say, you are my God. My times are in your hands" (Psalm 31:14).
Just as Grandpa Minchin taught me as a young girl, I can trust Him today and I don't need to worry about tomorrow because I serve a risen Savior. "He Lives!” As the chorus goes, "You ask me how I know He lives, He lives within my heart!"
Shelly Powell writes from her home in Arkansas. This testimony was written one letter at a time through the assistance of her “eye-gaze” device. You can find her blog at https://www.mountingwithwings.com. This also links to her FB page and YouTube channel.
World Church Prayer Requests
March 8 - 14, 2024
- Pray for Global Youth Day that takes place March 16th. Pray that young people all around the world will “show up” and get involved being the hands and feet of Jesus. To learn more, visit: https://www.gcyouthministries.org/events-and-proje...
- Please pray for the children of our church leaders. Pray that these children and youth will come to have a deep and abiding walk with Jesus.
- Pray for Adventist Possibilities Ministries and the many represented who are whole in Christ and serve regardless of their disabilities.
- Pray for the Middle East and North Africa Union (MENA) and for the difficult work in this region. Pray for the Holy Spirit to open doors and hearts.
- Pray for the Bhoi in Nepal. There are no Christians in the Bhoi community. Please pray that this people group of 149,000 come to know of Jesus and His eternal love for them.