Last night I watched the documentary, “Gleason.” A friend had posted on Facebook about it recently, so I thought I’d watch. I’m obsessed with documentaries, in case you didn’t know that about me. I didn’t know what the film was about before I hit play. Had I known, I’m not sure I would’ve watched it because it hit close to home in too many ways.
Here’s the summary: “After he is diagnosed with ALS, former professional football player Steve Gleason begins making a video diary for his unborn son, as he, his wife, and their friends and family work to raise money for ALS patients as his disease progresses.”
My husband did not have ALS, although his disease behaved almost exactly like it. We used to lament about his disease being the under-funded, under-researched orphaned cousin to ALS. It had all of the degenerative crappy parts, minus the resources and awareness.
Anyway, despite my better judgment, I continued to watch the movie. There is a scene around the thirty-minute mark that really struck me. Steve and his father and wife attend a healing service at a local church. Mid service, Steve is full of hope, believes he’s experienced healing and decides he is going to try to run. His disease has already affected his gait and general mobility, but he appears certain God had healed him. He says, “I’m going to run,” and then awkwardly gets in position to run, takes a few crooked and rigid steps and then falls to the floor.
It was heartbreaking and it was familiar. I know first hand the amount of hope he felt, the belief that God would somehow allow him to leap up and run. And I know the devastation of it not happening.
Why do I write about this? Because I’m sure some would say healing and prayers are a bunch of bologna, I mean we’ve all seen pretty ridiculous versions of this back in the boom of the televangelist era, right? A forceful preacher’s palm to the forehead and Bam! Healed! Ugh. I’m addressing the topic of healing, hope and faith because I want you to know how much I understand the faith battle that goes on in the midst of suffering. No matter how much you love God, I think if we’re honest, there are moments when we question His power and love. I know I did.
I remember lying next to my husband after he’d fallen asleep. I placed my hands on him and cried out to God in prayer. I begged the heavens to heal him. I anguished over his deteriorating health and I took it to God. I thanked God for all He had done for us but also petitioned Him with every ounce of faith I had. And then I prayed for more faith so I could pray with even more assurance.
Guys – I prayed my heart out. I prayed with a real and true belief in God’s ability to perform the miracle I was seeking. My husband believed in God’s ability to heal also, so just like the Gleasons, we attended a healing prayer service also. We’d heard stories of people who had been healed. People who had stage 3 and 4 cancers who were healed. We believed in modern day miracles and we wanted it so badly. So we scheduled the day and time and for over an hour we prayed. A room full of loving people gifted in prayer surrounded my husband. They placed their hands on him and we all begged for God’s healing over this disease. He was anointed with oil and we prayed and prayed and prayed. It was beautiful, loving and powerful. (There were no snakes or anything – it was pretty Midwestern and Lutheran in nature – nothing too weird.) Anyway, we left feeling peace and also anticipation for the healing we just knew God would bring.
The healing did not happen. My husband did not get up and walk. He didn’t feel better physically. In fact, he continued to get worse. I spent lots of money on Sacred Frankincense and other oils and the latest vitamin supplements. We went Whole30 with our diet. You name it, we tried it. I was desperate. I trusted that each new thing I tried would be God’s way of healing my husband. But none of them worked.
So did God just not care about us? Is God not who we say He is? Is he not who HE says He is? Were we duped? All of these thoughts entered my mind at one point. We studied the book of Job. We read from James about suffering and perseverance. We threw pity parties in Psalms and sometimes we didn’t read at all and just threw a spiritual hissy fit. But even then, we knew. We knew God was real, that He loved us, and that He was with us and for us. We didn’t understand why God’s plan was unfolding in a very different way than what we wanted. In time we would come to see God’s mercy and love in every alternate-answered prayer.
For anyone doubting God right now, please listen to me. God didn’t ignore us. He didn’t turn His back on us, even though His answer was different than our desperate requests. I’m here to tell you that God was 100% in our story 100% of the time! He was right there with us. He was in Steve Gleason’s story and He’s in millions of other stories of pain and suffering. He isn’t the cause of pain and suffering – He is the comforter in pain and suffering. He’s the empathetic, loving giver of grace and peace. He’s love, not misery. He’s the reason joy can be found in the midst of suffering. It wasn’t all fun and love and praises, for sure, but He used our struggles to change us. And He changed other people with Mark’s illness.
When our basement was being remodeled to accommodate Mark’s needs, we wrote Bible verses and song lyrics on the cement walls. Before the drywall covered it, we could see God’s promises and love surrounding us – literally. Tile guys, drywallers, plumbers, etc…they showed up to do a job, but they too were reading about God’s love and participating in His love story for us. Many service guys also wrote on our walls. One drywaller wrote his Mom’s favorite bible verse on our wall. After spending several days working here, one guy told me he was inspired to work on becoming a better person. God was using Mark’s disease for good. He was drawing others closer to Him.
We had all kinds of people show up to help us paint, lay flooring, carry heavy boxes and more. To us, this was a visual of love. And where there’s love…there’s God.
Guys, God showed up for us. He didn’t ignore us. He loved us through every minute of pain and sorrow in the people He sent to serve, love and care for us. And He absolutely answered our prayers. Did He give us a right-here, right-now healing miracle? No, but He did heal my husband.
Understanding that God heals in many different ways helped me realize that my prayers were not disregarded. They didn’t go unanswered, even though the answer was different than I wanted. God is God and I am not, as the song goes. My plans aren’t usually the same as God’s. I can only see the here and now, while God has a view of it all – the then all the way back to the beginning, the now and all the tomorrows. So I have to trust that God knows so much more than my finite vantage point understands. I can’t tell you why some people get the miracles and some people get the fast pass to eternal life variety of healing. I have no clue. But I trust in His goodness, His power, and His plan.
There were things my husband and I experienced because of his illness that were too beautiful to regret. The generosity of strangers, the comfort of friends, the compassion of doctors and nurses, and the kindness of neighbors were just a few of the examples of God at work in the middle of our storm.
I can’t say I was or am very good at being joyful in suffering, but I do have tremendous gratitude for the way God took a truly terrible, awful, and totally rotten situation and used it to tenderize our hearts.
I’m not going to leave you with Bible verses today. There are many that speak to all of this, and I encourage you to take a look. Read the books of Job, James and Psalms to name just a few. Instead, I want to tell you I’m sorry. I’m so sorry things have been difficult, unfair and heartbreaking. I think about all of you daily. I imagine what your stories are because I know you have one. And I pray for you. I pray if God’s plan is different than the plan you’re praying for, that you’ll still be able to see and feel His love for you. Oh, friends – life is so hard. A friend once said to me “It’s so unfair when life is unfair, isn’t it?” We need the God of angel armies & extra grace with us. And we need each other.
Extra Grace,
Jodi
*photo by Jametlene Reskp Photography
Beautiful!
Thanks for continuing to read, Tammy. And thanks for your kind word.
Your faith and love for the Lord are inspiring. I admire how you are taking all that’s happened in the past and allowing it to be used to glorify God and mold your heart. Hugs my friend…
Thank you for reading, Jodi!! And thanks for the virtual hug =-)
Jodi I can truly sympathize with you and Mark’s disease. My mom died from ALS. We never knew why she was having balance and walking issues. She saw many doctors and no answers. One doctor prescribed different shoes, imagine that shoes were going to fix the problem. After my dad passed I wanted to help mom find answers. We finally took her to see a nerve specialist, the name escapes me oh yes a neurologist. He did testing and told us he was 99% sure it was ALS, my mom was devastated as she no longer had hope. We planned to get a second opinion that same week but the day before this appointment mom was wheeled down to breakfast at the nursing home, as they were pushing her to breakfast her head went down and she was gone. We only found out this diagnosis the week she passed. She always knew something was wrong but they just never got to the bottom of it. I don’t think there would have been anything they could have done. As time progressed things just got worse for mom, she needed a lift to get her up and out of bed etc. Her hands were failing her, her voice was getting raspy, it was effecting her throat, in time her bowels would have shut down, I am so thankful she did not have to go through that humiliation. There’s a book about ALS and a gentlemen that told his story, after reading it I knew more about this dreaded disease. It was called “Tuesdays With Morrey” I think, can’t be sure any more. My memory is not serving me very well today. If you haven’t read it you should, it explains so much. I talked to mom a couple days before she died, she said she had dreampt of my dad and he couldn’t find her since she was in the GU nursing home and no longer in Mandan. He must have found her because the day of her funeral, she looked so at peace and no longer had an expression of pain and struggle. So that did make me feel good. Mom passed in 2006 and my dad in 1999, so she missed dad for seven years and it was so very hard for her. She knew that this disease was going to take her and she told me I will miss you kids. She didn’t want my brother to see her in that condition and she got her wish she died before his plannned visit could happen. I did feel bad that my brother was not able to see her once she entered the nursing home as he lives in TX, he planned a visit but that came in time for the funeral instead.
I miss mom and dad and they both died young as Mark. We can be thankful that God did take them from thier suffering. We don’t understand and yes we wish things could have gone the way we would have liked, but we don’t have all the answers. My dad was only 68 and my mom only 74, neither reachced thier birthday the year of death. Your post has made me think about many things this afternoon, good to remember and share with a friend! Thanks Jodi for sharing with me also. God is watching over you and your family, blessings Jodi! Love, Karen
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