Almost five years ago, Johanna and I planted a small garden on our apartment’s porch. It was a sunny, drafty, three-season porch – perfect for summer plants. Despite Johanna’s rapidly worsening health, we managed to plant an assortment of herbs in small pots and carrots in a large, handmade planter. Throughout the summer, we had a perpetual problem. Our yellow carrot planter remained empty. The young carrot shoots never got bigger than a few inches before wilting and dying, leaving their decaying stems strewn across the dirt. This wouldn’t have been such a big problem, except that our carrot planter was by far the largest part of our porch garden. Mid-summer, I let the soil dry completely and tried to replant carrot seeds. This attempt failed too, and the soil lay empty for the rest of the season. Each time Johanna and I came home or left the house, we saw the empty planter. It was a glaring blank spot amidst the greenery.
If Johanna’s and my marriage were a summer garden, the most noticeable and painful blank spot would be the loss of being able to physically share life together. As Johanna’s health wilted, we were brought to the unthinkable place where physical intimacy was no longer possible. The closeness we had once hoped for and expected became out of reach. Even from the beginning of our marriage, physical intimacy became more and more destructive to Johanna’s body. Within the first year, we weren’t even able to kiss each other without Johanna coughing and feeling worse. We joked about it then, thinking this disease would pass and that our lives would quickly return to normal, but we could never have imagined where it would lead.
The rapid decline of Johanna’s health heralded a very different kind of physical touch. Instead of our touch being a source of joy and a celebration of our love, it became a risky necessity. Instead of walking hand-in-hand with her, I carried her in my arms to the Emergency Room as her body endured an anaphylactic attack. Instead of embracing her, I put my hands under her shoulders, preparing to support her weight when she lost consciousness. Instead of feeling her head lean casually on my shoulder, I lifted her neck and administered medicines to her frail body. All the while, I had to take care to minimize my interactions with her, as my touch or even presence could trigger an allergic reaction. Even now, as I care for Johanna, these realities permeate and dictate our interactions. Johanna’s illness heralded the physical touch of crisis and survival.
Now I am used to this kind of touch being our reality. It just feels normal. I’m used to walking through an airlock with a mask, donning new clothes, and washing my hands. I’m used to watching everywhere I go and everything I eat to ensure that I am as safe as possible when I help Johanna. It has been this way for so long that I don’t know what it would be like the other way around. Yet, I long to be near Johanna again, enjoying her company on the couch, walking hand in hand and being near to her. I long for the time when I can touch her without fear of hurting her. When I think about all of this, all that we are no longer able to do together, I am crushed. I feel like a limb has been severed, like part of me has disappeared. When I am out shopping for Johanna’s food, I often stop and marvel that there are people who don’t need to worry about physical intimacy harming their loved ones.
This loss in my marriage serves as a giant fissure that breaks open my escapist tendencies to pretend everything is okay. Everything is not okay, not even close. Like the glaringly empty carrot planter that stood at the entry of our old apartment, so the glaring lack of physical intimacy is constantly before me. Touch is an essential part of marriage. It transcends physical boundaries and has its own language. It shows and communicates care. Touch is about presence. Its absence is a constant reminder that things aren’t as they should be.
Thinking about these realities is sobering. Some days I desire to thoroughly distract myself from them, so I can forget how lonely and isolated I feel. Other days I have to fight the wiles of the world around and within me. The dual worlds which tell me my life isn’t complete without the comforts of physical intimacy. That this is an essential need I have the right to seek and fill. In lieu of my painful realities, I have to be more careful about everything. I have to guard what I think about, watch, and listen to.
Looking at my marriage mainly in terms of sexual fulfillment, the world would tell me to find a way to meet my needs. Yet, God keeps pointing Johanna and I to a different way. While the loss of physical intimacy is a deep trial and blank spot we grieve every day, God has helped us see that intimacy is about much more than touch. It’s about being present emotionally and intellectually; about sharing the presence of God through prayer, studying His word, and growing together. It’s about realizing that we weren’t made to fully satisfy the other. The temptation in marriage is to become the source of each other’s strength, comfort, and love. Now we have a physical barrier that tangibly reminds us of our need for God.
Despite this blank spot, God has done what we never could have. I don’t know quite how to describe it, or how to put it into words, but God has brought us closer together over the past four years than when physical intimacy was possible. It wasn’t easy and it didn’t happen overnight. Neither did it depend on either of us, but as Psalms 124 declares, “If it had not been the Lord who was on our side!” The loss has been deeply painful, but meditating on how the Lord is fighting for us has given me tremendous hope. I need not depend on my love or Johanna’s love to sustain either one of us. I need not muster the strength from within to endure physical separation from my wife. I need not run after other things to meet my physical desires. God has taught me that if He takes a good gift away, He will fill the gap that’s left. As He has brought us closer to himself and each other, God hasn’t let the lack of physical intimacy rob the joy of our marriage. Instead, in the aching and longing for what we can’t now share, He has given us His strength to persevere and His love to make us flourish.
Thank you for sharing. God is pulling you into a relationship with Himself that others will never experience.
Hi Terry! Though we would never have chosen this for ourselves, God has been very present indeed. We have truly felt his help during this season. We’ve learned first hand how suffering can serve to draw us near to God. He is not far from any of us.
I can’t leave my home except for doctors appointments and the very rare trip to the beach because of severe allergy asthma. Both of you are in my prayers.
Hi Lydia, I’m so sorry to hear about your own struggles with severe allergies. Allergies are isolating and scary. Thank you for praying for us amidst your own health challenges!
As always, I am deeply honored to read your blog posts about you and Johanna. I deeply appreciate you sharing all of what you two are learning through this fiery trial. I particularly related to this one in terms of loss of physical intimacy. I am there too, but from different circumstances. I am 36 years old and my husband left our marriage 7 1/2 years ago to be with another. I have remained single out of obedience to the Lord. It has been a long, lonely journey. Like you and Johanna, I have learned that when we walk in faithfulness and obedience, although costly, the rewards are eternal. I pray one day my husband will come to repentance and return to our marriage. Until then, I walk through life without a companion. But as you have said, God is enough…more than enough. Prayers and blessings to both you and Johanna.
Wow Nicole, I’m so sorry. What you have been through is terrible.
May God continue to bless your obedience as you follow Him, even in the hard places.
Thank you for this, Scott. It encouraged us.
Hi Betsy, I’m glad it was encouraging! That was one of my hopes for it as I wrote it. Thanks for being an encouragement to Johanna and me, too.
Scott, I feel so grateful to God for you and for Johanna !!!
What He is doing in you is a lesson of love for all of us who read this blog.
Thank you for your vulnerability in sharing your sufferings and thanks for taking us through your blog to turn our eyes to God, Who is Sufficient, always!
I pray for you and for Johanna!
Raquel
Hi Raquel! Thanks again for your encouraging words and prayers for us. I am truly grateful for them.
Once again, your words have encouraged and uplifted my heart! Your gift of heart-felt expression clearly resonates with many of us, but more importantly, we need to have examples of those who respond well (Biblically) to profound adversity and trials. The Lord is using you Scott (and Joanna) mightily to shine as lights in a dark and depraved world, even among wrong-headed Believers. You are laying up treasure in heaven where moth and rust do not destroy. I think of you both often and pray for the Lord’s kindness and mercy in your lives. I pray for this excruciating season to end, yet I know and believe our good and loving heavenly Father does ALL things well. His depth of love for your and your precious wife is beyond the scope of our thinking or knowing. There is SO much we will never be able to fathom until we are united with our Father face to face. Continue to submit to God’s wise and fatherly counsel, guarding your heart against fear, envy, discontent and pride. There is a blessedness in humility and surrender. May the Lord continue to strengthen your heart and enable you to live for the glory that truly matters…….God’s glory alone! In Christ’s love, Aurelia
Hi Aurelia,
Amen! Thank you so much for your encouraging words! We, too, desperately pray for healing and renewal, but we have seen, time and time again, the amazing ways God’s power is made perfect in weakness. Some moments have brought us to tears as we think about the Lord’s faithfulness to us and the way he has met us in our weakness and need. To God be the glory, indeed!
After being sick for many years, I found out about MCAS because of a Yahoo article about your beloved Johanna and her struggles. I emailed Dr Afrin (back when he was still in Minnesota) and he referred me to a doctor in my current home state for treatment. I have good days & bad, and I’m not anywhere near as sick as Johanna, but my husband and I are also struggling with the loss of intimacy. Praise God that I don’t react to my husband or our kids being around me. We have to believe He has a plan for us. He is our strength, and we have grown closer through Him. The Lord has carried us during the bad days. I very much appreciate having someone who has stuck by me during this battle, as I’m sure Johanna is thankful for you. I just wanted you to know that because of you and your wife sharing your story, I have found some quality of life, although I am starting to lose foods more often (right now, most of my reactions stem from only food, so I know how fortunate I am in that respect). I do have a small understanding of what you are going through. You both will remain a permanent part of my prayer list. God bless you and Johanna!
Hey Jenny,
Thanks for sharing your experience with MCAS so far. It is such a scary and unpredictable illness. I’m so glad that you and your family are able to be together as you weather these heavy storms, yet I grieve with you as I know that your family’s dynamics have irrevocably changed. I rejoice, too, that you have grown closer to the Lord as life has taken unwelcome turns. Thank you for praying for us! I pray that the Lord would guide you down these scary roads of navigating food while having MCAS (I remember those days vividly), and that you would have unexpected joy and endurance in the waiting. May the Lord bless you and your family, too!
Hi Jenny my Doctors are thinking I have MCAS as well. I’m really scared. Would you be willing to communicate with me about this?
I would, but I can also recommend joining the Mast Cell (“Activation”) Disorders Forum on Facebook at this link: https://www.facebook.com/groups/1489732487968980/. It has been a place to turn when I needed an answer for something, or if I was able to share something I’ve done that might help others. A lot of times just reading what others are facing has helped, knowing I’m not alone. I will pray for you too, Carolyn.
Found this through your latest caring bridge post. Thank you for the updates… your carefully chosen and honest words are so encouraging to me as a fellow believer. Been a follower of your story for a long time (I think originally from her TGC article) and think of you and your wife often, especially when I myself wade through (comparatively minor) health issues, and look at the world around me thinking of how “good” others seem to have it, and how oblivious they are to the Lord’s common grace! Thank you for helping with my own perspective. Your love for and faithfulness to your wife is evident, as well as your trust in our Lord, in spite of having so many material comforts stripped away, in a very unique circumstance that not many will experience. Praying for you and your family as you navigate these difficult waters, and will pray that the Lord will be near to you both in the midst of loneliness.
Love this quote from Johanna: “He has taken away much from my dream life, but has given infinitely more at a cost I’ll never know in order to give me the best life. …His unfailing love in light of my unfaithfulness testifies that he is a foundation worthy of my trust. His promise to make all things new gives me hope that this isn’t the end.”
I’m glad you found your way here after finding Johanna’s article so long ago. Thank you for thinking and praying for us. What Johanna wrote years ago is more true now than ever.
Hello Scott, your blog post had me in tears. I also have severe MCAS and my husband’s name is Scott as well. My Dr. is presently under advice of Dr. Afrin. We would be so grateful if you might be willing to connect with us. We are 2 years into this battle and I am feeling very tired. Thank you so much. Victoria
Hi just came across a YouTube video where you were sharing what you and Johanna have been through. I cannot imagine what you two have been through, and watch both of you cling to God. I think that most of us will never go through what you two have and are still going through. But to listen to you talk about you emotional intimacy is something that we will never know either. Not to make light of the physical intimacy both of you long for. Because I know that is great. Thank you for sharing your story with us, I pray the her doctors will find something some how to help. I am going through my own sickness and I will not go into it because you have plenty to worry about. But I do want you to know that your strong faith and love for God has helped me to not give up!!! Thank you, the Pslams are such great prays and songs that when I don’t know what to pray I can read.
Hi Tonya, I am so glad you have felt encouraged by our story. God has been holding us the whole time, and both Johanna and I would readily admit that without his presence and help, we would be lost and in despair. May God comfort you as you struggle with your own illness. May the words of the Psalms capture and give words to the trials and joys you experience!
Hello!
I just watched a 2017 YouTube video about Johanna’s disease and google searched her name for an update. I was really hoping to see that Johanna had recovered, but I just want to say how encouraging it is to see you both living your less than desirable life style in good spirits, according to your post. I hope you both find hobbies and different fun things you can do together; I’m sure you already have but I just can’t imagine living in that kind of isolation. Like having a book club, singing, playing music, writing a book (I’d read that!), or maybe a YouTube channel!
I hope you both have a lovely day!
Blessings,
Christie
Hello to the Watkins family. I have followed and seen the story reposted. I have read some of your blogs and researched Johanna illness as well as trying to stay in the loop with the struggles you both face daily. My question, due to the issue I cannot find a solid answer, is she still alive? Is she doing better? How is the house that you built (a castle, a protector, a HOME) doing? I can’t find any updates of her health or anything as informative as the documentary. Please help, inform. Thank you!
P.s. You two have taken the vows in front of the Lord deeper than I have ever witnessed. As well as the constant support and love of the family.