When I taught second grade, I had a number of students who struggled with writing. One of these students had a habit of writing down words that made no sense when read by others. When he would read them to us out loud, however, they suddenly made sense. Missing nouns, articles, prepositions, and adjectives were suddenly inserted between the words actually on his paper. Only when I would use a pencil to point to a word would he start seeing what was missing. He wasn’t seeing what he actually wrote, he was seeing what he wanted to have written. He needed others to help him throughout the year to see what was actually there. I must confess that I am much more like this student than I want to be, except I don’t make this mistake with writing, I make it with the reality in front of my very eyes.
When Johanna first became sick many years ago, she started having reactions to many foods. Foods she had previously been able to eat without thinking suddenly caused a myriad of strange symptoms. Some foods would make her nauseous, others would make her asthmatic. Some even caused her to run a fever – a symptom the doctors didn’t believe until she was admitted to the hospital and we demonstrated it in front of them. We never knew what would happen when Johanna ate. With particular foods, however, Johanna and I were slow to accept what was happening. One of our favorite snacks to share together was a banana ice cream, made from ripe, frozen bananas, and sometimes accompanied by peanut butter, chocolate chips, or a homemade blueberry sauce. Johanna had to stop eating peanut butter and chocolate chips earlier in the year, but we still shared our banana ice cream with homemade blueberry sauce. Johanna fell ill on nights we shared this treat, but since it was one of her favorites, we were reticent to admit it was making her sick. For many days, in fact, we continued to share this treat together, blaming her worsening health on other foods she had eaten during the day.
After continuing to eat it, her reactions worsened until, one evening, she had an anaphylactic reaction. I rushed her to the emergency room. After a few days in the hospital, she returned home, no longer anaphylactic, but still very sick. It took an emergency room visit for us to admit and accept how sick this food was making her, and she finally had to stop eating our banana ice cream treat. We should’ve stopped making it much earlier, before Johanna had an anaphylactic reaction, yet neither of us wanted to admit what was happening before our very eyes. Our desires and wishes helped us selectively ignore the reality that one of the few foods Johanna loved, and could still eat, was no longer safe for her. It is easy to let our desires shape reality. It is much simpler to conform what’s happening to what we know and want, rather than admitting we need help to understand or accept it. I was unhappy and unwilling to see Johanna lose the favorite of her few remaining foods. So instead, I let my desires shape a reality where it was not the cause of her reactions.
Facing reality entails loss. Johanna had already lost much of the health, food, and life she loved to her illness. For us to acknowledge banana ice cream as unsafe, then, meant accepting yet another loss. To rightfully face what’s before us, we need to know what grounds us. If we’re going to admit we’re losing what we love, we need to know what we haven’t lost. For me, when Johanna couldn’t eat this food anymore, I needed to believe that joy was still possible, that God could sustain Johanna as she became more and more unable to eat food. Instead, the loss of this simple treat felt like the nail in the coffin of her health and joy. My inability to grieve, lament, and trust that God could carry us through these continual losses made it easier to ignore reality. I found all sorts of creative ways to explain Johanna’s reactions, mentally tiptoeing around what was actually causing them. If I had been able to open my hands and humbly accept reality, instead of letting my desires twist it, we may have been able to avoid much pain, and an emergency room visit.
Moments like this one remind me that, like my second grade student, I need help to see reality. I need God and others around me to point out where I’ve engaged in self-deception or reality distortion. If left to myself, I am prone to imagine things differently than they really are. Again, like my second grader, I don’t need this help once, I need it often. This is one of the reasons why I am so thankful for the Bible. The Bible serves as a constant reality check by being an unchanging source of truth, a place I can always go to learn more about God and listen to His voice through the scriptures. And within these pages of scriptures I hear words encouraging, changing, and challenging me. I hear the Apostle Paul saying, ‘God’s power is made perfect in weakness’. I hear Jesus praying in the garden before his crucifixion, ‘Nevertheless, not my will, but Yours be done’. I hear Jesus exhorting his disciples to heed his words, ‘Let these words sink into your ears’. The Bible is full of truth and promises which circumstances cannot change. It reveals the words of God – the deepest reality life has to offer.
Wow. Thanks for sharing your unique story. I like what you said here: ” I need God and others around me to point out where I’ve engaged in self-deception or reality distortion.” Keep holding on to the promises of God. Blessings!
Hi Chad! Thanks for reading and sharing your thought. I was encouraged by it!
Hey Johanna and Scott:
Jacy has kept us up to date and it seems you both had a bad time in November and December.
Glory and I are so concerned for you both, and we have no words afraid that we’d undercut the situation or make things worse.
Both of you are on our minds daily and we wish G-d’s will for you both.
Gary & Glory Dooley
Gary & Glory, thank you for your continued thoughtfulness and prayers. It has indeed been a difficult past few months. God has brought us through a deep valley, and we have more ahead of us. He is with us and will give us strength each day.
Very good words!
Thank you Betsy!
I seen your story on you tube earlier today and I can’t stop thinking about your family. I hope you know how inspiring you both are. You have so many praying for you.
Is there a Facebook page to follow your story and progress?
Hi Ty! Thanks for asking. We don’t use Facebook much, but I do keep a CaringBridge updated. You can go to http://www.caringbridge.com/visit/JohannaWatkins to see how things are going. Feel free to reply further if you have any questions!
Hi Scott and Johanna. I was on youtube and your interview on 60 min Australia was suggested to me. I watched it and then googled y’all, curious if her condition had improved since the video was from 2017, and it led me to this blog. I was very moved by your words and have been praying for you both just now. I really hope and pray that one day soon researchers will find a medicine that will enable Johanna to resume a normal life. It just doesn’t seem fair but God never puts more on us than we can truly handle. You are such an inspiration of what a loving husband should be. I will continue to pray and check up on y’all. May God continue to give you the strength you need to care for her. Love from NC!
Hi Helen! Glad you stumbled across this blog. Thank you for your encouragement and prayers! In my experience with Johanna’s illness, I would say that God has given us more than we can handle, much more, in fact. I often feel fully beaten down by our daily circumstances. We are learning, however, that God strengthens us when we are weak and stretched further than we can bear. God often gives us more than we can bear so we will rely fully on Him.
Scott–some mutual friends connected me to your sites awhile back, and you and Johanna have been consistently on my heart. This past year, a close 33 year old church friend of ours became severely ill from MCAS and lost her job, her housing, and all foods except two. My husband and I are sharing our home with her and her husband, but this is not a long-term safe situation. Looking ahead to her next step is difficult for all of us–just like you shared in your post, it involves a deep acceptance of the reality of this terrible disease, moving into grief, and continuing to bear the burden of the daily difficulty of life with MCAS. We live in Minneapolis and her doctors are Dorf and Afrin. If you are able to connect we are looking for resources/ideas for disability lawyers, housing realtors/contractors/ideas, etc.
Thank you for sharing your suffering. You are not alone.
Thank you so much for sharing your story. I am truly sorry for your trial and you are both will be in my prayers. I can see how God is working through both of you to be an amazing missionary of Jesus Christ and the power of the Atonement. I’m sure being so honest and vulnerable is scary but you are an amazing blessing to others.
Thank you for your kind comment! Like a commenter posted on one of my posts a while ago, I find the process of writing helpful. It helps me think about how God has used everything we’ve been through to change and shape us. I’m so thankful some of my thoughts can bless or encourage others. Thank you for your prayers!