As I’ve sat down to write and reflect over the past few weeks, most of what I’ve mustered has been deep sighs and hollow complaints – ‘I don’t even want to be thinking about this’ has been a common refrain. Such is the current state of reflecting on the disappointing realities of Johanna’s health, and my life as her primary caregiver. To place myself in front of my computer and to prayerfully reflect is to face the disappointing realities of my life over and over again. Like a prisoner’s ball and chain, the deeply troubling problems of my life go with me everywhere, and I’m getting tired of even thinking about them. A family member recently asked me, ‘Do you miss teaching?’ ‘Of course I miss teaching,’ I replied, but in my head I was thinking, ‘I don’t even think about teaching anymore. Why revisit one of the painful losses of Johanna’s illness – having to leave a job I enjoyed and loved? I try not to dwell there anymore because I’ve already grieved this loss. Why revisit it?’ It was the discouraged thinking of one truly resigned to disappointment.
I like to think I have good reasons to be disappointed. A simple perusal of my day would find it filled with difficult routines. I deeply long for Johanna’s healing, to end the night without having to help lift my wife into bed. I wish the work of the day, the medicines, the caregiving, the morning until night vigilance, was leading towards progress, instead of barely maintaining a sliver of health. I long for a semblance of normalcy in our marriage, for Johanna to lay her head on my chest, to open the front door of our house and go on a walk with her. Amidst these discouraging days, I have felt so burdened. Each day feels so similarly painful, so bleak. Even in joyful moments, such as spending time with my nieces or nephews, or reading a story to Johanna, I feel the heavy burden of Johanna’s suffering, her isolation, and untreated illness. My days are chronically disappointing.
A few weeks ago I had been reading The Return of the King, by J.R.R Tolkien, to Johanna, and came to this passage, where the protagonists, Sam and Frodo, were on a perilous mission in a faraway enemy territory.
“The land seemed full of … noises, but there was no sound of voice or of foot. Far above the Mountains in the West the night-sky was still dim…. There, peeping among the cloud-wrack above a dark tor high up in the mountains, Sam saw a white star twinkle for a while. The beauty of it smote his heart, as he looked up out of the forsaken land, and hope returned to him. For like a shaft, clear and cold, the thought pierced him that in the end the Shadow was only a small and passing thing: there was light and high beauty forever beyond its reach. His song in the Tower had been defiance rather than hope; for then he was thinking of himself. Now, for a moment, his own fate, and even his master’s, ceased to trouble him. He crawled back into the brambles and laid himself by Frodo’s side, and putting away all fear he cast himself into a deep untroubled sleep.“
When I finished reading this section, both Johanna and I began to cry. Johanna’s disease so often feels like a terrible fate, and to hear the hope of Sam, even in this made up story, reminded us of the longing for healing each of us feels each day. This passage has been on my mind ever since, and recently I’ve been thinking about it more, in light of Advent this year. Like Sam, I long for my own moments of relief, relief from fears about Johanna and the future. I yearn for the ‘ceasing of trouble’ that Sam felt as he cast himself into an untroubled sleep. In light of Advent, I’ve felt the dissonance between my desires of momentary forgetfulness and escape from troubles, and Christ’s willingness and vulnerability to enter into these very troubles.
Yes, as I have thought about what the coming of Christ means for me this Advent, I have felt a somber admonishment. Though I have little power and seek momentary relief from my daily struggles, Jesus had supreme power, yet made Himself present in the greatest troubles. The beauty of Advent is not in the momentary forgetfulness of life’s greatest disappointments, but the profound realization that it was the magnificent entrance of God into these very disappointments. The beauty of Advent is not in an abstract ‘light and high beauty’ like the one Sam saw, but rather in the light that came down as a helpless child. As I long, like Sam, to put away all fear and sleep untroubled, I need Advent to remind me that Jesus came into my troubles, not to take them all away, but to make a way through them. I need Advent to remind me I can enter my own deep discouragements and disappointments with hope and expectation. In doing so, I will be following the footsteps of the Great Light who came down, so many years ago.
Happy Advent
As always, thank you for sharing honestly and deeply Scott. I know it isn’t easy but appreciate your doing it and sharing it. Love you and Johanna both so much and I think of you both and pray for you both often.
Thank you, Jacy. It’s true. I wrote, rewrote, and scrapped much more than is reflected here, but God keeps me coming back and eventually I have something I feel I can share. Thank you for your persistent prayers. We love and think of you, too!
You are a very gifted writer.
Your devotion to your wife is a beautiful thing.
I think of you two often, though we are strangers, we are brothers and sisters in Christ..
Praying for you both as you continue to walk through the valley, Christ is with you.
Faith
Thank you, Faith, for the encouraging words. They spur me on to keep writing and reflecting, especially when I find it hard! Thank you, too, for your prayers. Merry Christmas to you this season!
Hey Scott, as you know, I also have MCAS, but not nearly as severe as Johanna. A few weeks ago I woke up with a migraine and everything hurt-even my skin. I have had ten surgeries on my knees and ankle due to the hyperlaxity that can come with MCAS. There are nights that my knees hurt so badly that I don’t know what to do with myself. I was telling Abba that I really did not want this to continue without end in sight, and I was discouraged. I had been meditating on Lamentations 3, but that morning the Holy Spirit called my attention to a specifice verse. Jeremiah had put to words how truly difficult his life was as a prophet of Yahweh:
My soul continually remembers it
and is bowed down within me.
**But this I call to mind,
and therefore I have hope:**
The steadfast love of the LORD never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
“The LORD is my portion,” says my soul,
“therefore I will hope in him.”
Abba reminded me that I have the power to be hopeful (and joyful) again by calling to mind who Yahweh really is.
My prayer for you is that your Abba will be palpably close to you and Johanna, and send reminders each day that his love never end, his mercies are new every morning, and his faithfulness is great. And that through these kisses from your Abba, you and Johanna will find the strength to face another day.
Many blessings, and may the God who came into our suffering at Christmas, makes his love, mercies, and faithfulness fully known to you.
Mary Ann
Mary Ann,
Thank you for these beautiful reflections, and for sharing them here. So many of the things you shared connect with us, as we too feel the weight of suffering when the end seems nowhere in sight. Your words were an encouragement to us, and your prayers capture the desire of our hearts. Thank you for this heartfelt prayer!
May God’s presence and comfort be continually felt for you this Christmas, too!
Look for the art of Kintsugi: As a philosophy, it treats breakage and repair as part of the history of an object, rather than something to disguise.
Japanese people have this tradition. A vase is broken and then put together glued with gold.
I was a shattered soul. And now a soul again.
Hugs from Puerto Rico.
Hi Mariana,
I’ve actually seen this kind of pottery before, and it is indeed beautiful. When it comes to my own ‘breakage and repair’, I think of the Bible’s language of being an entirely new creation – I was dead in my sins, but am alive in Christ! I wonder how the philosophy of Kintsugi would both differ and intersect with this idea?
Scott, how is it possible that in the midst of so much pain you can write so beautifully to bring comfort to other suffering souls? I see in this a sample of what 2 Cor. 1: 3-7.
I read this post while suffering an occasional somatic pain crisis accompanied by my permanent neuropathic pain and I couldn’t help crying while reading the quote from Tolkien’s book … it’s beautiful, and it reminded me of Rom. 8:18.
I am very grateful to God for you, for your vulnerable and sincere writing that leads us to recognize the reality of this broken world (denial or escapism is not an option) and then forces us to look up to see the Light that descended from heaven, to see the One who loved us (Rev. 1: 5)
Thank God for using you to help us regain a correct and biblical perspective of this Advent in the midst of our suffering.
I look forward to the day when we are with Our Beloved Father, when He will wipe away all our tears and we will enjoy the delights of His presence forever.
My love and prayers always with you and your beautiful wife Johanna!
Raquel
Hi Raquel,
Thank you for these beautiful words! They were a great encouragement to me – spurring me on to keep writing and reflecting! I am so sorry to hear of your pain and suffering… I’m praying for the Lord’s healing and his comforting presence while you wait. Merry Christmas to you!
The greatest Christlike sacrifice we will ever make in this world is to die (to self) for another. You wrestle with this profoundly, yet continue to die to self again and again, day after day. This is the greatest love of all and you are an unwavering role model, just as our Savior was. You are building great treasures in heaven dear one. I could only hope to merely “think” as boldly as you live. Yah bless you and keep you and Johanna. I send prayers from my heart for both of you, to our Father.
Hi Lauren,
Thank you for the kind words, though I’m reticent to accept them all! May we all continue to hear Jesus’ words to take up our cross and come after Him. Blessings to you today!
Hello Scott,
I was at NWC at the same time as Johanna though we didn’t really know each other (though I think we had a mutual friend in Tasha/Natasha). I have POTS, mcas, with EDS- joint hypermobility. I’m embarrassed to share that here because I experience only the very tiniest fraction of your pain as my life contains an abundance of normals despite the scariness. But I wanted to write that to say that your journey in suffering has helped me make sense of my own. Every year yields a new hardship to bear and another memory of an activity my body no longer will tolerate. I’ve watched my husband become sick in front of me in his grief and helplessness during ambulance rides for another ER trip brought on by an allergy we may not be able to place. My husband faithfully prays over my body every morning and begs God for healing. I know He will- it just may be on the other side.
My soul feels trapped and abused by its body, but, like you, He’s persevered me to look past survival as my goal to Him as my goal. I’m blessed for every chance to serve Him with whatever I’ve got in the moment.
I’ve followed you guys for several years now, but never wrote. Your posts minister to me, so thank you so much. They remind me of Job- his hurt and hope. Johanna’s gospel coalition article was powerful and touched me deeply. Some of the people that seem weakest in this world are the strongest because of God- Johanna is a mighty warrior with our Father! I know God is providing so many prayer warriors for you and I pray for you as you’re brought to mind. God bless you guys.
Scott and Johanna, I miss you my friends. I often think about how to try and talk to someone going through intense hardship. Often I fall short of what I meant to say or do. Scottl remember how we used to chat about the latest situation you were in, and then I would see you in the hallway having to give up your own time to update someone on the current situation. I thought about how it seemed to unfair to have to spend so much emotional energy doing that. Someone commented recently that when you have a hard situation you feel like you often have to carry to the listener’s burden, too. How crazy! But I assume it often happens where you, as the one in a tough spot, have to uphold and comfort
someone who is trying to comfort you. I enjoyed when you would turn up to my class and just say “Dom! Your kids in particular don’t do story mapping very well!” And we would problem solve it as professionals. I enjoyed finding a moment to share with you that was simply like hanging with a buddy.
As Christian brothers and sisters it’s possible we have sometimes probably burdened you with our questions and heavy hearts, but know that however imperfectly we serve you well are joyfully burdened by your lives and we can’t wait to read your book when you finish it, and when Johanna is healthy, whole and healed. Also, I keep a photo of Johanna and I teaching the Daily 5 lesson in my class ( the one where we switched shoes) in order to remind myself of how to serve you in prayer. We love you both, and miss you! You both shaped the hearts and minds of the kids at Hope, and it was an eternal work.
Dom!
Good to hear from you :). Thanks for continuing to pray for us over all these years. I smiled at the memories which were recalled upon reading your comment. We both hope to see you in person soon, and for the picture on your desk to no longer be necessary. Thank you for joining us in our prayer for healing!
Rachel,
Thank you for sharing and sorry for my tardy reply! I shared your comment with Johanna, and our hearts and prayers go out to you as you struggle with chronic illness. May you continue to find comfort from the Spirit and in the promises of God. He is able to sustain us through every trouble.
Hello Scott, thank you for opening my eyes and my heart to understanding the scope of what my husband, also a Scott, has been through since my MCAS journey dx in 2017. I’m in MN too and we’ve directed many nurses and Doctors to your tv appearances to learn how severe this disease is. My case is also very severe. I almost died from Covid in November being intubated for 30 days. My recovery and decline of physical abilities has us shaken. Your blog is soul touching and I would like to know if you would be interested in connecting with my husband.He doesn’t have any one to talk to or confide in.
Many prayers, Victoria and Scott Doyel
Victoria,
Thank you for your kind words. I am grieved to hear you are journeying through some of the same things.
I sent you an email. I hope you got it!
Hi Scott! I was writing in my prayer journal this morning about my husband actually and the Lord brought you to mind. I believe the Holy Spirit said you are an excellent husband and depressed now. I prayed for you then checked your blog to see how you are doing. I will pray for you as you are on my mind! I had a vision recently of numerous young women waiting in line to be healed of digestive diseases. I know it is on the Lord’s mind. I will continue to pray for Johanna now that God brought you to mind.
Scott, my heart breaks for you because I am in your shoes. There are many times that I have stopped to reflect on life only to find that you have gone through those struggles before me or still have them and I find your reflections encouraging.
Thank you, Alex. May the Lord continue to meet you in your disappointments.
The Lord has brought you guys into my mind. Prayed for you guys and trusting that God, the great I am, will help you guys. He is the I am that heals; He is the I am that protects; He is the I am the provides; He is the great I am who loves you so very much. In Jesus Name. Amen