Johanna’s illness forced me to learn a whole new game. It dropped me in the middle of an all-encompassing battle which pitted me against disease, mystery, and suffering. In the beginning, I didn’t know the basics of this game, and I struggled to stay upright, often staggering under the heavy burden of our circumstances. While the daily demands of chronic disease were crushing, I learned there was more to this battle than the knowledge, safety, and constant work required to keep Johanna alive. This was a game which pitted me against myself. The relentless realities of Johanna’s illness tested my own fortitude. It’s a wartime-like action and unwanted battle to plod on in the midst of extreme unknowns. Early on, I slid into a routine of attempting to fix things while distracting myself from fear and worry. If I let myself be still, roars of doubts would overwhelm me. Quietness revealed weaknesses which were uncomfortable and hard to admit. I was in need of inner strength training, and the Lord began to compel me towards actions which at first felt extremely unpleasant. He encouraged me to begin new habits which initially felt like heavy inner weights.
Weights are familiar territory. Throughout my high school years, I played a lot of soccer. I never considered myself very good, but I tried hard. One summer, I was interested in building leg strength and bought some wrap-around ankle weights. I started with three pounds on each foot and felt the difference right away. When I dribbled, I moved clumsily, not expecting the extra weight to feel like maneuvering through molasses. When I passed, I motioned awkwardly, like my foot had become a wrecking ball. Eventually, I worked myself up to ten pounds on each foot, adjusting more quickly to the increasing weights. Although hard at first, the weights slowly changed the way I performed the fundamentals of soccer, forcing me to rethink passing and shooting. Their challenge enticed me because I wanted to become a better, stronger player. I wanted to win.
The challenges of chronic illness and caregiving make it feel like there’s no way to win. Unlike my experience in soccer where I had the clear aim of improvement, I’ve often felt clueless as to what my goal is in the midst of caregiving. Is it finding a cure for Johanna’s terrible disease? Is it becoming a better, stronger person? It often feels like I barely have time to stop and catch my breath, but between the repetitive tasks of caregiving, there are small chunks of time to use as I want. In the past, I have often filled these times with using phone apps or reading articles and news. I’d reach for what was directly in front of me, what required little effort. Distracted by the pixels in front of me, I didn’t have to think about my realities. Rather than sit with my own thoughts, I sought release from them. Every painful moment became an opportunity to look forward to the next distraction. As I’ve written elsewhere, these habits of delay tactics erupted, and I was left utterly disoriented as to how to cope with the tyranny of suffering.
There’s wisdom to not focusing on our trials and to purposefully resting, but what I was filling the quiet with wasn’t helping me endure. I felt the emptiness acutely. Nevertheless, the thought of trying to change felt like another heavy burden, adding to the ones I was already struggling to bear. The inclination to replace mindless activities with intentional, focused effort was daunting, and I resisted it for some time. Yet my down time distractions kept leaving me dry. In these moments, God prompted me to go to Him, having His word be what I looked to first. So, over the course of a few weeks, I decided to do a trial run of memorizing Bible verses. I began with low expectations, strapping on this spiritual discipline as an inner ankle weight I didn’t want. It was a small change to my daily routine, but I soon began to see this new weight affecting me.
God slowly used memorizing His word to minister to my spirit, helping me prioritize something which made the rest of my day more meaningful and purposeful. Over the past year, I’ve been working on certain sections of the Gospel of Luke. Pondering Jesus’ teachings has helped clear the fog around my heart, helping me daily see my need for God’s help and grace. Regardless of how mindful I am of it, there’s always something I’m relying on to help me endure and get through to the next day. It’s easy for that thing to become my own ability or the feeble strength of distractions, but God’s Word points me a different way. There’s a part at the beginning of Luke where John the Baptist declares,
“Prepare the way of the Lord, Make his paths straight. Every valley shall be filled, and every mountain and hill shall be made low, and the crooked shall become straight, and the rough places shall become level ways, and all flesh shall see the salvation of God.” – Luke 3:4-6
This promise reminds me of the goal I’m aiming and fighting for. It’s not my glory at stake. Meditating on scripture is interacting with Jesus Himself, the Word of God, and Jesus’s words comfort and compel me to remember the promises He gives to His children. Just as the ankle weights in soccer caused me to rethink the fundamentals of playing, so this inner ankle weight has caused me to change what I’m dwelling on. Now, in between the painful realities of caregiving, I carry words spoken by Jesus Himself. I carry the knowledge of His salvation. This discipline exposes my weakness and failure to trust God as my source of all strength. Yet, it also positions my heart to seek God’s help and gives me a strong foundation of truth. It makes me eager to grow in other habits that will help me depend more fully on Christ. This weight has turned out to be a huge grace in my life, and I thank God for disciplines like these. He knows I need them.
Thank you Scott, I have made feeble attempts at memorizing through my life but it is always good when I do. I wonder why I stop. It is not easy but I think it would be easier the more I did it. I now understand how you are getting through each day. You and Jo are in our prayers through this time of suffering.
Thank you Jane, for your prayers and comment. I’m not sure if it’s easier to memorize scripture, having done it for a while now, but it does feel more normal. I think the most exciting part is seeing how smaller bits fit in to the whole. The books of the Bible have the most important stories to tell, and having them with me fills my mind with wonder and awe.
Scott, thank you for sharing. I think of you and Johanna often. Prayers.
Thank you Karen, for your continued prayers!
Scott, I sent you an email to your gmail account on 4-9-19. Just wondering if you saw it.
I thank God for you, brother.
And I thank God for you, Cor. Thanks for walking with me through these times.
Hi Scot, its been awhile.
I am reminded of recurring dreams I once had as a teen. There was a monster chasing me. The harder I tried to run the hard it was to run (ankle weights), the monster would catch me! Somehow, I learned that I must face the monster… turn to meet it. Somehow, in my dream I did turn and the monster disappeared (poof), gone. Your monster is trying destroy both you and your wonderful wife… are you pissed? Are you mad at what evil has tired to do, to both of you, remember this is not G-d? You need a sword to fight evil, looks like you found one. Blessings.. GDD
Hey Gary, I’m glad you left a comment. Sometimes I am angry. The Lord has been helping me with this, however, as he’s been teaching me the importance of grief and lament. I am trying to break my habit of being angry at our circumstances and am instead trying to truly recognize the difficult situation I’m in, bringing my grief and trouble to God. The Bible is a wonderful place to find people lamenting well, and I am happy to use it as my ‘sword’. Blessings to you. – Scott
I really do appreciate your honesty. You find great strength from G-d’s word, I am humbled. As you know we lost our 45 y/o son to suicide in April 2016. My wife and him were very close from birth onward. Her grief took her to great depths and for a very long time she was far from herself. I began to see my wife again in the fall of 2018. Before that, I was at my end. I didn’t know what to do for her or how care for her; my patience was all but gone. But G-d brought her around when I was at my weakest. G-d is great…
Stay strong brother…
Johanna and you are still in my prayers everyday! It’s impossible to forget.
I wish I was better at memorizing bible verses. I had given up but your writing is very inspiring
and it makes me want to try. Thank you!
Thanks for keeping us in your prayers Lydia! Some days I want to give myself a ‘break’ from memorizing or practicing verses, but the Lord often reminds me that while I am in the unique place of needing to be at home, there is no better time to commit verses to memory. Your circumstances may not allow much, but there is always something powerful in knowing more of the Bible. God will honor your efforts!
Thank you so much for your inspirational writing. We not only share a first a name but a life journey as well. I am a Christ follower, husband and caregiver to a wonderful women who has debilitating symptoms from MCAS. Your stories are amazingly similar to the journey we have been on. Thank you for putting these life lessens into words we can relate to. I myself draw strength and focus from your heartfelt teachings and experiences. God Bless!
Hi Scott. Thanks for your comment! It’s encouraging to hear you’ve been encouraged by these posts. May the Lord give you strength as you continue to care for your wife in difficult circumstances.
What an amazing person you are!
Hi Melissa! Sorry it’s taken a few days for me to reply. Thank you for your compliment! When the story is all told, it will be crystal clear that God did a great work, in spite of my weaknesses and failures.
Hi Scott & Johanna! I found your story in my search for patient videos for my new channel on YT and wanted to know how she’s doing today so I found your blog and wanted to reach out. I was so blown away by the love and compassion you all have for Johanna. If only all of us has such an amazing support system as well as a good doctor (Dr. Afrin is my hero). Anyway, please know that all of us in the mast cell community are rooting for you both. God bless. xo
Hi Michelle, we certainly wouldn’t be where we are without the support of hundreds of people, some even strangers! God has been so faithful to us. I wish you favor in your efforts to educate and support people with MCAS!