When this house was rebuilt to make a safe space for Johanna, we completely reinsulated it from the ground up. Though we had more than heating in mind when we did this work, it served us well this past winter. For a few days in January, the frigid, polar air mass that usually resides over the arctic had shifted to the upper Midwest. While its blistering winds dropped windchills below -30 degrees Fahrenheit, our house stayed toasty within. Thankfully, the polar vortex passed after a few days, and by the time April hit, I’d turned our radiator heat off, and the nearby neighbors had pulled out their grill. Suddenly, after we’d enjoyed sixty and even seventy-degree weather for a week, the majority of central Minnesota was smothered in six or more inches of heavy snow. It was a storm that took many by surprise. When I went to get groceries to make Johanna’s food, I dug out my buried hat and gloves again. Despite my attempts to wipe the snow off my car, a pile on the top slid to my windshield as I drove. I saw the neighbor’s newly brought out grill pulled under the house’s awning, and people bundled up as if it were the dead of winter. In the past I imagined the transition between winter and spring to be gradual and fluid, but recent Minnesota winters have had me thinking otherwise.
In the many years Johanna has been ill, I’ve had much to grieve. I’ve lost the gift of sharing physical intimacy with her, the job I love, and the normal, joyful interactions which were once scattered throughout my daily life. For a while now I have viewed these losses as events of the past, thinking that feeling grief over them at the time was sufficient to move on emotionally. I made the mistake of thinking of grief as a brief season, instead of viewing it like a Minnesota winter, lengthy and liable to rise unpredictably. As I’ve been reflecting on the grief Johanna’s illness has brought to my life, I’m beginning to see grief can work in much the same way as Minnesota Winters and April snowstorms. Its acute severity seems to lessen over time, only to suddenly rise when least expected.
For me, grief often pops up, unannounced, after I’ve had a run-in with normalcy. A few weeks ago, I spent time with my sister, her husband, and my young niece and nephew. I enjoyed a meal and talked to them about life, all while enjoying being an uncle. I got to hold my youngest niece and talk sweetly to her. I played imaginative games with my nephew, ones that involved rolling and running and all-around ruckus. Upon returning home, and for the next couple days, I felt restless, discouraged, and anxious. It took me a while to put a finger on these emotions, but I eventually realized that the ‘normal’ time I had spent with my family made the painful realities of my life as a caregiver more poignant. I felt lonely coming home from my sister’s house, walking upstairs to a vacant living room. I felt the pain of having interactions with Johanna be so limited and brief. I felt the loss of normalcy and realized I was walking through the wintery cold of unexpected grief.
A similar experience occurred when I recently returned to my former workplace as a teacher to get an important document. I was glad to learn there wasn’t school this day, because I couldn’t have borne seeing my old students. Later that night, as I reflected on the memories stirred while being back at my old school building, I wrote,
‘My memories of school are happy memories. I do not look back on these times as stressful and strenuous. I look back on them with pleasure and joy. The joy of teaching students fundamental concepts and chasing them around the playground stand unmatched in my assessment of good memories. Teaching was good work. It was hard work. It was rewarding work. I haven’t let myself think about teaching a whole lot because it feels like paging through old photo albums of a better time. It feels like prying the cap off a bottle of past joys, the substance long gone, but the enticing scent still there to remind me of better times. I’m reluctant to draw near to those scents because they are a reminder of things gone.’
These kinds of experiences are not comfortable places for me because my favorite place for grief is in the past. I’d rather not acknowledge it’s come anew, because that means I need to experience its unpleasant emotions again. Many times, I have vented these emotions in anger, or deafened them in distraction. Yet recent unexpected moments of grief have reminded me of the importance of lament. Whether by journaling, writing short prayers or poems, or listening to heartfelt music, lament reminds me that God is not absent in the troubles of my life. Without God’s presence and the comforting promises found in the Bible, my grief would only end in despair. In lament, I can admit my troubles with boldness by telling God these circumstances are too much for me. Unlike anger and distraction, lament helps me open my heart and hands to God and others. It invites God’s healing presence in my weakness.
As I continue to care for Johanna amidst her horrible illness, I will face many other moments and stretches of grief. Like Minnesota Winters, many of them will pop up unexpectedly. Normal moments with family and friends, trips to places I used to visit often, and even reflecting on the past may bring a surprise storm of grief. In these times, I want to remember the power of lament as a way to voice the grief I feel. It invites the Lord’s presence and I can grieve in faith, believing:
He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.” – Psalm 91:1-2
Thank you for your vulnerability. You guys are in my prayers frequently. I’ve been walking through a season of grief as well and it is always helpful to hear other people’s points of view. God is good. That’s all I know.
Hi Nan! Thank you for praying for us. God is good. May he be your comfort as you run to Him in grief.
Thank you Scott. A friend shared this post with me, and it was encouraging for me to read it and share it with my husband. I have been ill for eleven years, with Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and MCAS. I am still surprised by grief, and John, my husband, has struggled to know how to deal with it. He didn’t understand his response to our situation and he didn’t know how to grieve this. I struggle to see him struggle. I sometimes struggled with guilt, because what severed me from life as I knew it had the same effect on John and our life as a couple. Yet God has been faithful in ministering to us. Athough we lost many friends at the beginning, we have found Jesus to be such a close friend. I sometimes mourn for John because so few people understand the burdens a caregiver carries, and I was glad to be able to share this with him as an encouragement that he is not alone in the world of humans.
Hi Rebecca, thanks for sharing about your situation. I am so sorry to hear about your own health struggles, and can imagine your husband has felt many of the things I have while caring for Johanna. Thank you for sharing this with him! Our lives were upheaved when Johanna became ill, as it seems yours was when you became ill, too. May the Lord bring relief to your body and encouragement to your husband, John!
Happened upon your story. How beautifully you discuss your sufferings as you lean on the only One who cure. Your eyes fixed on the Father- how your testimony must bring a smile to his face. I can’t help hope but think of Job. I’m only so happy to begin my prayer journey alongside your precious family….a prayer for miraculous healing so that, in keeping with His ultimate will, He may be glorified. And that your earthly love may be reunited with you once again. Until that time, i can only be inspired and say “well done, fellow brother in Christ.”
Hey Jennifer, thank for praying along with us for healing. We do not understand God’s timing, but we do know He is good!
I have nothing else to say except you are an amazing man.
I hope Johanna finds the answers for illness and is once again able to be with you and her family. X
Thank you for your kind words Lisa! I can assure you that, were you to follow me around throughout the day, you would see that it is not my own efforts that have made me who I am, but only God’s mercy and grace. He has used our circumstances to advance His purposes in us.
Thank you for sharing your honest writing. I found your blog and caring bridge through friends of friends. Joining you in prayer. Wake up God! Move yourself! Your children are sorely pressed!
Hi Elizabeth, glad you found our blog! Thank you for your encouragement and prayers.
Hey Scott- I just wanted to say “thank you”. Thank you for sharing your guy’s story. Because of you- as my husband started to experience more alarming symptoms of MCAS, I knew we had to be drastic before we escalated to him reacting to even our kids and me. He had gotten anaphylactic and could not handle any supplements or drugs. Each item of clothing had to be meticulously smelled to make sure there were no scents. Your story was the fire that pushed me to research relentlessly… and thankfully even though we are living an unconventional life, my husband is not on the getting worse trajectory at the moment. Praying for you both as you come to mind. Praying God sustains you.
Cara, thank you so much for sharing. It’s wonderful you were able to be proactive on your husband’s illness. I pray and hope he can find relief, and that God sustains you all, too! Thanks for reaching out and commenting here!