A few days ago, I spent a scholarly hour researching a medicine before going to bed. It was late and I was already tired, but I had a burning passion in my heart. I had been scouring the patent and medical literature on a cancer medicine which has the potential to make Johanna better. This is not the first time I’ve done this. Not even close. I often lie awake before bed, dreaming of a day when Johanna feels better, wishing with all my heart that her body would work again, that her pain would dissipate, that there would be relief. It’s a hope I’ve had since the beginning of her illness. A hope that prompts me to relentlessly search for answers. I’ve yet to find these answers and my research a few days ago fared no better. The specific medicine I looked up had recently become generic, and I had hoped to find a pure form of it, free from inactive ingredients which could seriously endanger Johanna. Alas, the only generic options were pills, just like the name brand variety. It was another dead end. A closed door. A dashed hope.
I’ve had a lot of dashed hopes. I try not to think about them, but memories of them come anyway. They wash up in my consciousness like small, rhythmic waves on a seashore, reminding me of the violently churning waters of my life. I see the marriage I wanted, one without the extreme limitations brought by a nefarious form of Mast Cell Activation Syndrome. I can no longer share many simple, everyday expressions of spousal love with Johanna. I cannot hold her hands, hug, or kiss her. To be close to her is to endanger her. I must wear a mask around my wife, slowing the spreading of germs, so as not to make her feel sick. I cannot put my arms around her when she weeps. I cannot have her lay her head on my shoulder when she is exhausted and tired from her suffering. She sleeps alone at night, as I do upstairs. This is not what I wanted for my marriage.
I see the job I had, teaching at a school I loved, with students I loved, interacting with families I loved. I clung to my job as a source of income, insurance, joy, and vocational fulfillment. I did not see the storm clouds brewing, portending my job’s end, nor did I want to see them. Nevertheless, on a December afternoon, after I learned Johanna’s brothers could no longer care for her, I quit my job. I taught for another week and walked out of my classroom. For months I couldn’t even talk about it. I was a walking nettle, stinging whoever churned my memories of teaching. I wanted to push them out of my mind. I thought, ‘Why linger on memories of it? It will only make things worse.’ I was in denial about my brokenness and anger. Losing my job had thrown me into churning waters and left me washed up, soaked and wounded. I wanted to drag myself up like nothing had happened, but the wounds were obvious to everyone who knew me.
Like a true tidal wave, these dashed hopes are crushing. I grow weary thinking about them. What will the future hold for me? Do more disasters await? Questions swirl in my mind as I reflect on these dashed hopes. It is in these beaten down places, the places where the bottom of life has fallen out, where I cry out to God.
I waited patiently for the Lord;
he inclined to me and heard my cry.
He drew me up from the pit of destruction,
out of the miry bog,
and set my feet upon a rock,
making my steps secure. Psalm 40:1-2
I’m clinging to these verses, reminding myself that my dashed hopes do not have the final word. I will not be waylaid by the churning waters of life. I have hope that God will set my feet on the rock of his unfailing love. I am working on this hope each day, practicing it. I never thought hope could be practiced, but our circumstances have been showing me otherwise. Each day I have a choice to believe that God will strengthen me, filling me with patience and joy as I wait for Him to return and make all things new. Hope is like a muscle. It goes through stress and injury and strengthens with practice. I was reminded of this recently, when I listened to a book about the Apostle Paul by NT Wright. He writes,
The optimist looks at the world and feels good about the way it’s going. Things are looking up. Everything is going to be alright. But hope, at least as conceived within the Jewish and the early Christian world, was quite different. Hope could be, and often was, a dogged and deliberate choice when the world seemed dark. It depended not on a feeling about the way things were or the way they were moving, but on faith. Faith in the One God. This God had made the world. This God had called Israel to be His people. The scriptures, not least the Psalms, had made it clear that this God could be trusted to sort things out in the end, to be true to his promises, to vindicate his people at last-even if it had to be on the other side of terrible suffering. Hope in this sense is not a feeling-it is a virtue. You have to practice it like a difficult piece on a violin or a tricky shot at tennis. You practice the virtue of hope through worship and prayer.
Though I feel like a waterlogged seafarer, tossed and crushed by the waves, thrown barely conscious on the seashore, I have hope. It’s not a perfect hope, but a hope that is being exercised and working itself out. A hope that places the life, death, and resurrection of Jesus at the center. A hope that looks ahead and sees the day when everything is made new. There will be no dashed hopes there.
We are Praying our sweet friends. We may not know the exact suffering you all are experiencing, but we are similar in some ways. I Pray one day we can walk in the beautiful sunshine outside, side by side…no masks! Would love to join you guys in Prayer some time. God Bless you. Happy Thanksgiving.❤️
Leah
Thank you Leah! Just yesterday I told my wife I wished I could whisk her away on a walk outside. We are looking forward to when we can do this again and are grateful for your prayers in the meantime.
This is beautiful, Scott!
I imagine the sadness of having to stop exercising your vocation as a teacher at school … but you are doing it through the writing of this blog! God is good!!!
Thank you for teaching us biblically and for setting an example! 🙂
Thank you also for being vulnerable and sharing what you feel and for giving glory to God who supports and strengthens you, and who is your hope!
I always think of Johanna and you! I pray for you!
May the Lord strengthen you!
Raquel
Thank you so much Raquel! Your comment encouraged me and I’m happy to share things from our life that can encourage others. We are so very grateful for your prayers.
Scott – you write so beautifully. Thank you for sharing your thoughts so well. Much appreciate your candidness. Blessings to you both on this Thanksgiving. All of us despite our various situations, have much to be thankful for and you have stated this so well.
Blessings, Eloise Loeffler
Hello Eloise! I’m glad you’ve found this website and took the time to encourage me with your kind comment. I miss seeing you and Rod at school, and just about everything else that goes on there. Thanks for your encouragement!
Although we have never met, I follow your live’s very closely searching for how I might better pray for you and Johanna. I am thankful to your friend’s who sent the word out of your struggle and those words found me. I am just a Ragamuffin who sins daily, but has Hope and has Faith that my prayers for you both will be heard, then combined with the cries of all the Saints who know of your trials AND your Faith. Be encouraged Scott.
Hi Gary, thanks for taking the time to pray for random strangers like me and my wife! We are encouraged by you and the many others who daily lift our burdens with us to God. He does indeed hear our prayers, and his presence has been near during this long season of trouble. God is good!
Scott,
I just discovered your writing here. Thank you for sharing your story – I’m guessing it’s just as much coping mechanism as it is sharing mechanism, but I still appreciate it. I was particularly struck when I read your “about” page. I’m guessing we’re about the same age, because our weddings were not too far apart – my wife and I were married in 2012. Our marriage took a sharp turn toward unexpected trouble shortly afterward, though ours was a struggle with mental health more than physical. I don’t mean to suggest that I know what you are going through, but I found myself resonating with your words here. I, too, struggled mightily with isolation and loneliness, white-knuckling to hope. Many days, hope felt like all I had left. Thanks be to God, our walk through that valley ended (for the most part) in 2016, and we’ve spent the last two years learning to be a married couple again. I hope and pray that God will do the same work in your story.
I know there’s likely nothing anyone could say, much less a perfect stranger, that would make things any better. So just know that I’m praying for you as I write this, that I have the utmost respect for your tenacity in this trial and for the love you are showing your bride, and that … I guess just that my heart is breaking for you. I don’t know how to say it any other way.
Keep the faith, brother. Keep holding to hope. God is faithful. God is faithful.
Hah! You are right in one sense that my writing is ‘coping’. Indeed, I tend to process more when I write, thinking through how I feel, and what I think God is saying through his word and what that might mean for our current situation. I would be writing even if this website didn’t exist, but I find the fact of having a blog encourages me to write. Thank you for sharing about what you and your wife went through – it sounds very painful and awful. I am glad it seems things are better and that you are relearning to be a married couple. That is some of the most important and hard work you could be doing.
Thanks for praying for us. God is faithful, indeed.
-Scott
The Lord led me last night to spend some time interceding for her healing. I pray this encourages you and Johanna. Romans 15:5,6.
Jeff
Hello Jeff, I’m so glad you took time pray on Johanna’s and my behalf. Thank you! Those verses were encouraging, as we need new endurance each day. Only God can carry us through each day with joy and hope.
Hi Scott! This brought tears to my eyes. Thank you for writing and being open and vulnerable. I know writing isn’t easy and I really respect and appreciate your obedience to the Lord in doing it. I just feel the Lord is and will use your life and writings in many powerful ways, more than you see or know.
Wow, thanks Jacy! I really appreciate the encouragement! There are some days when writing is easier, others when it’s harder, but I’m glad I started doing it more. Having this blog is making me do it more regularly (which is something I need). Johanna and I are so thankful for you!
Hello Scott and Johanna,
I came across your story on the Gospel Coalition and have been following it ever since on CaringBridge. I just want to say thank you for sharing your journey. It is difficult to find the words to truly convey how it has impacted me. All I can say is that Jesus is being greatly glorified through you both and it is a beautiful thing to behold.
Blessings and prayers,
Nicole
Hi Nicole! Thank you so much for your encouragement. I never thought we’d be on this journey, but I am glad sharing the things the Lord is teaching us has been helpful to you.
I don’t know either one of you. But I think of you both often, and pray for you.
Hey Mo,
Thank you for praying for us! I was just sending an email to someone else today, remarking on how important and sustaining people’s prayers are in our life. God gives us strength for each day!
Hi Scott,
Thank you so much for sharing your experiences and journey living wit a spouse with a severe chronic illness. I found your blog after reading the People Magazine article about you and your wife. I, too, have severe MCAS, which developed last winter after being exposed to leaking carbon monoxide from a faulty furnace. Sine then, I have been mainly house-bound and have many of the same restrictions as your wife. It is truly one of the most isolating and terrifying experiences. Every medication I have tried has just caused me to get worse (also due to fillers), and I struggle to remain hopeful. My husband and I had just married about 6 months before all of my MCAS symptoms started so we also never got the married life we dreamed of : ( I am praying that there is a treatment out there that will help Johanna. I would love to connect if possible, or at least if you and my husband could connect, since it can be such a lonely and challenging role to be in. Praying for you both.
Sarah
Hi Sarah!
I am so very sorry to hear that you too are suffering from MCAS. It is a terrible illness. I pray that you would find God as your refuge during this time. Know that God has done a beautiful work in our marriage, despite Johanna’s MCAS. Our marriage didn’t turn out as we dreamed either, but we have hope!
Hey Scott and Johanna,
Lots of love, and I love you both. I came across the 60 minutes video on YouTube, bless your brave hearts, and your sticking with it faith.
Hope and pray for good things for you. This is what true love looks like.
Gretel
If I were you guys I would try eating food grade diatomaceous Earth for at least 30 days. Please let me know if you need any help with this. It’s saved my life at one point.