The following testament is to share the experience of God’s Faithfulness throughout my husband’s life and death struggle with ALS disease, commonly known as Lou Gehrig’ s disease. It’s a journey God took our family through for 16 years, but more specifically how He brought us through as a couple united in Faith.
I gave my life to Christ at 21 yrs, and was married at 23 yrs to an man of faith, Scott Brodie. He and I met while we both worked at a health club. Two years after we were married, my husband started his own small business of mobile upholstery. By the time I was 31yrs, we were a family of six. Both of us were teaching Bible studies, attending Bible College and fully involved in Ministry Leadership. In addition to children’s school and sports activities, our family-life revolved around our Church community. We were a happy, active young family.
Four years later, in 1997, my husband and I learned of the most devastating news to affect us. Scott was given the terminal diagnosis of A.L.S.; a slow nerve degenerative disease which causes the nerves throughout the body to stop signaling the muscles, causing them to atrophy so they can’t be used. The progression causes people to lose the ability to use their hands, walk, swallow, speak and continues until the person eventually loses their ability to respirate or die of lung infection. We were in disbelief how this could have even happened to us! Apart from a slight complaint of a weakness in Scott’s ability to press a pen while writing, he now learns this disease is going to quickly take his life in 2-5 years and there is no cure or way to stop it.
Upon hearing the shocking news of Scott’s diagnosis, we were so thankful to know Who to turn to. God numbers our days is the only One who really knew what was going on with Scott’s health. My husband asked the Doctor what treatments there were for this health condition and he answered there were none. Scott then asked him what alternative therapies might prove helpful, again the neurologist had no suggestions and seemed to discourage any attempt for us to take any action nor did he give us any hope. We were frustrated listening to this professional who’s manner was cold and clinical. From our view, the Doctor did not relate any compassion delivering this life defying diagnosis. Scott ardently blurted out that God could heal him, in belief of God’s miracle working power doing the impossible when men say there is no way. Then the Doc visibly moved his chair and body direction away from Scott to talk to me to impress the gravity of the situation.
From that point on, Scott and I had very different roles which God entrusted each of us to carry out in approach to this ominous medical condition. Initially, I was gripped with feelings of fear and insecurity within in my mind; giving me an anxiousness in my spirit. Scott was immediately thrust into total reliance and utter dependence upon God. His battle was not only a fight in his mind and spirit but was beginning and projecting to be extremely physically reducing. I praise God that He trusted Scott with a particular gift of faith to confront every limitation he would face in the succeeding years.
Together from God’s Word, we knew through prayer we could enter the Throne Room of Heaven and this is where we received grace and confidence to remain hopeful. By having an assurance that God is for us and loves us as His cherished children, we were able to trust that He would not cause meaningless suffering. Everything He permitted had a purpose, and still does. Specifically, that God will confound the logic and reasoning’s of this world through vessels of faith and display it for His Glory.
God took our family through many mountains and valleys. In the valleys we experienced natural insufficiencies, fears, demonic opposition and dry, wildernesses places, but God was always there. In mountaintop experiences, we watched how God answered specific prayers by making a way, no matter our need and opened new doors of faith to us. We sensed the nearness of His Presence surrounding and equipping us.
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Throughout the succeeding years, we set out on countless alternative treatment protocols. I instrumentally helped all therapies and we tried many hopeful alternatives; homeopathic, nutritional, invasive; even disputed treatments. We were optimistic that God might work through any of them or instead, He could supernaturally bestow a miraculous gift of healing.
In all our undertakings and research, we considered whether our treatment endeavors and monitoring could be used as a case study for other sufferers with this disease. We hoped that even if as a test subject, Scott might help to find a cure or beneficial treatment for ALS. I documented each avenue we took and retained copious records of Scott’s medical management.
The two-to-five year life expectancy markers past and it appeared God may have a different course for Scott; seemingly he was “holding his own”. However, eight years into his diagnosis, his speech, swallowing and facial muscles were being so affected that he was not able to eat enough calories to sustain his already decreased weight. He went from an original weight at ALS onset of 195 lbs and declined to 120 lbs. In 2005, Scott underwent surgery to get a feeding tube; this became his source of nutrition for the next 7 years.
As the years continued to progress, Scott’s nerve and muscles slowly weakened. By this time we were less able to socialize and were more confined to our house. The Holy Spirit was our constant companion, enlarging our capacities and increasing our endurance to adapt to the continual losses of Scott’s disabilities. He became more and more dependent on me for his physical care. I was effectively his hands, feet, and his voice facilitating the majority of his ambitions. God gave me an inner strength to live out Scott’s daily life, as well as my own. I was his 24 hour soul-mate, help-mate and care-giver. We both relied on the Truth of the Scripture, that our Hope is found in Christ. He would not give us more that we could handle but was the way of escape through the supply of the Spirit and God did supply practically, emotionally, and spiritually! Our part was to acknowledge the way He was providing with grateful hearts. Scott and I were growing in understanding that sometimes God allows a cup of suffering in our lives for us to share in the sufferings of His Son (Col 1:24). Christ’s sufferings do remain on this earth and have great purpose for the Church. He can use them as a way to transform our hearts and minds into Christ likeness.
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Constant accusations and projections from the adversary into Scott’s mind were never completely silenced although they did lose their dominating influence. The Word of God became the Refuge he confessed and believed. We held to the promise in 2 Corinthians 4:15 that if all things are for our sakes, then we can trust that God will use everything we go through for our benefit; even if we can’t see or understand it now.
There were many sleepless nights, life threatening infections and encroaching losses in Scott’s lung capacity. He continued to have the will to live out God’s purpose for his isolated assignment. Throughout the day, through online sermons, internet studies, devotions, fellowship and conversations with others; Scott came to comprehend a significance and application for his life through Scripture. The metaphor of Christ as the Bread of Life, became a vivid depiction to me as I witnessed my tube fed husband truly satisfied and nourished spiritually; Scott was feasting at God’s Banquet table!
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As Scott’s breathing became gradually more labored, we were made aware of his options for having a tracheotomy to improve his respirations and were advised to consider the serious consequences that could result as well. Here is what we were told: 1) The surgery itself could be life threatening, 2) and if he survived the surgery, it still would not stop the progression of the illness 3) Scott would be vent dependent and no longer able to attempt to speak or smell and 4) it would create a financial burden, requiring 24 hour care registered nursing care. For a year we vacillated as we weighed out this decision, we prayed for God’s guidance and confirming peace to evidence to us whether Scott should undergo this life changing surgery.
In March of 2009, Scott contracted a viral infection and fever and was taken by ambulance to the local hospital. As he was there recovering; the question of the tracheotomy came up again. Scott let the doctor know he would have an answer for him in two days, we set our hearts again to keenly listen to the Holy Spirit. By Friday we had a settled peace and I, myself, had a simple unction that seemed to hit me on the head “he can’t breathe, get him some air”. We finally had the release and the permission we had been waiting for, we scheduled the surgery for the following Wednesday.
Recovery from surgery meant additional time for both of us in the hospital and also several weeks together in a Nursing Home, I didn’t dare leave him alone. Myself, my daughters and another care-giver were all instructed for the settings on the ventilator, accompanying machines, supplies, prescriptions and care protocol.
The following months were unimaginably difficult and there were many adjustments to our entire family’s lifestyle. In time, Scott recovered from surgery and his acute infection. Color came back to his face and his skin no longer looked sallow from lack of oxygen. His energy improved because of the ventilation and he could finally sleep better. We were thrilled as he was able to get off life support for increasing amounts of time and eventually only need the ventilator breathing support at night.
The life sustaining measures of Scott’s feeding tube and tracheostomy helped to extend his life until he passed away three and a half years later in November, 2012. Those last years were very intense but especially precious to our family. The fellowship we shared was sweeter and each day was lived as if it might be Scott’s last. We gave everything we had, and then God gave us even more of His Grace for our endurance; just as He has promised in His Word to supply.
Scott’s main reason for living was to please the Father; knowing he would one day stand before Him and give an account of his life. His aim was to have no regrets when that Day came before the Holy Presence of God. As best as he understood the Will of God, Scott wanted a clear conscience. He pressed toward the High Calling of Christ with everything within him and determined not to limit God’s power to do the impossible in or through his life. I also ran this race, and neither of us gave up. Personally, have no regret or misgivings for believing God had more available, if we could only believe. This had given us all the reason in the world not to hold back. God multiplied Scott’s allotted years and instead of giving him only the 2-5 years the neurologist had grant, The Lord multiplied it and prolonged his life 16 years. Significant benefits were made possible from the added amount of time. Scott purposely advanced the Kingdom of God, as heaven will one day reveal.
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To those who suffer through varied, harrowing circumstances; hold tightly to God’s Word and keep your eyes steadfast on the Hope of Christ. His Holy Spirit will perfect you and develop His Character within you. Throw yourselves on His Grace and live a life of Faith pleasing to God.
“And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.” Romans 5:3-4
