Many years ago, during one of Johanna’s first hospital stays, I slept on the windowsill of her hospital room. It wasn’t a very wide sill and was more a strip of wood than a bed. There was a thin cushion over it and the adjacent window was cold. It was nearing the start of winter, and I had to be careful not to turn or lean my body on the window, lest I contact the frigid glass pane. I also had to avoid leaning the other direction, risking a fall onto the cold laminate floor. The sill would’ve been a better fit for a domino than a person. Though far from a comfortable bed, I didn’t hesitate to sleep there. I was exhausted and needed rest of any kind. Later, I discovered that a rollaway bed could be brought in for me so I could sleep near Johanna’s hospital bed. Some nights, however, there wasn’t time for a bed or sleep.
One such night was after Johanna’s second round of experimental chemotherapy. I had brought Johanna into the emergency room after a delayed anaphylactic reaction and by dawn she’d been admitted to the hospital again. Although the room number was different from her past stays, the windowsill was familiar. As I lay on the cushion, I could see the entirety of the hospital room. I could see Johanna, tucked under thin hospital sheets, with IV tubes and a white mask starkly contrasted against her sickly yellow-green pallor. I could see monitors blinking against the sepia-toned walls of the room, furnished with medical instruments and fluorescent lights. A faint, diluted smell of antiseptic filled the silence of waiting. Johanna was too sick to sleep, and though I had the option to go home and sleep in a real bed, that didn’t feel right. I had no desire to leave. There was no normal home to return to. We had lost the stability of a home that felt safe and secure. The closest thing we had to that sense of being home was being near each other.
When Johanna and I first got married, we spent hours unpacking wedding gifts and setting up things in our apartment. We had many empty frames to fill up with pictures of our favorite memories. Even though we didn’t own the place, it began to feel like home. I could never have imagined that, years later, I’d feel like I belonged in a hospital room. I know it wasn’t the room itself that made it feel like home, but rather that doctors, disease, and pain had become our world, our normal. Johanna’s body had become too unstable for our old apartment or any normal house. Like a crumbling foundation of a home, disease had a way of robbing peace and comfort from all my surroundings. In the ongoing suffering, rest had become constantly elusive and a sense of belonging gradually absent.
The house that we live in now is a gift from God through extremely generous friends, family, and strangers. It’s been a safe space for Johanna to live in and has brought fewer environmental triggers and fewer hospital stays. I’m glad I don’t see that hospital windowsill as often. Nevertheless, it doesn’t feel like home. Johanna lives on the main level, and I live in the upstairs. We have completely separate living spaces by necessity. The majority of my time is spent in the upstairs or kitchen of our house, outside Johanna’s space, where I am alone. The walls around me, floor beneath me, and ceiling above me are all amazing, but they feel like more of a waiting room than a home. If Johanna weren’t here, I would feel entirely out of place. Our home was heavily renovated to accommodate disease and disability and while it’s an enormous blessing, it’s also a picture of what’s broken. I am surrounded by reminders of loss.
I feel the absence of the belonging I felt when disease hadn’t altered my life – when my daily normal looked more like an average normal and I didn’t have to think about survival. Now my daily routines are normal only by necessity and comfortable only because of familiarity. Though I’m most comfortable here with Johanna, it feels far from the kind of safe, pleasant, and rooted feeling I’ve known in the past. I feel like a misshapen Lego piece, not quite able to snap into the world I inhabit. Even when I partake in small moments of life that used to feel normal, like grocery shopping, seeing family, or watching a movie with friends, I feel out of place. Caring for Johanna happens out of sight, yet I seem to carry this heavy burden of loss with me wherever I go. Some days my search for belonging looks more like clawing, and I reach for the easy rest of entertainment. Other days I seem to go no further than whispering a desperate prayer. Despite my attempts, I can’t avoid the painful realities that make me feel out of place everywhere.
Though I often lament and grieve this feeling, it does open my eyes to the fleeting nature of belonging. Disease has had a way of stirring and troubling what I once thoughtlessly accepted. Now it’s not uncommon for me to feel like I have my feet between two worlds. In one world I see my role as Johanna’s caregiver as a gift from God, a chance to love her as my wife and do what is good. In the other I see how very painful our life has become, how her suffering is not the way things are supposed to be, and how I don’t feel at home in it. It is a daily battle to figure out how to live between these seemingly paradoxical worlds. I recently finished reading The Hiding Place, by Corrie Ten Boom, and feel like one of the quotes from the book captures this sentiment well. After having just been saved from from a Nazi air raid during World War II, Betsie said to her sister Corrie, “There are no ‘ifs’ in God’s world. And no places that are safer than other places. The center of His will is our only safety—Oh Corrie, let us pray that we may always know it!” Though I’m not facing the horrendous danger these two women faced, I feel the same need to feel hidden in the center of God’s will – to know that today I am right where God wants me, despite feeling out of place. Though everything in my life has changed since the days of decorating our apartment with pictures, God has not. He has been the solid ground when I feel adrift.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
Thank you for sharing, Scott. Though we don’t know one another, the Lord often brings you and Joanna to my mind as I pray. My husband and I also live in intense isolation due to CIRS, though not to the degree you and Joanna face. I know the grief we often feel over the immense loss of community, belonging (people and place), and I pray often for the Lord’s grace to not only sustain you, but in His kind mercy to show his power through lifting the burden of illness, and all the loss it brings. Know that the Lord is fighting for you by placing you on the hearts of many. We are interceding.
Thank you so much Darla. It is comforting to know people like you and your husband are thinking and praying for us even as you go through your own chronic stretch of suffering. May the Lord continue to sustain you and your husband!
Hi Scott, your writing is very powerful. Have you been able to get in touch with Dr. Afrin? He is the best MCAS doctor around, and I wonder if he’d have any new ideas for Johanna to get better.
Hello! Yes, my wife and I were treated by Dr. Afrin for many years, until he moved to New York. He continues to be in touch with our current doctor. Dr. Afrin was the doctor who made Johanna’s diagnosis while she was in the hospital years ago. Though we’ve yet to find a definitive treatment, we hope with time to find more things that can help Johanna. I’m always researching and looking for more. Thank you for your kind words.
Thank you for your unwavering trust in God. Praying for strength for both of you as you live in the place you find yourselves.
Thanks again Jane, for your continued prayers. God has used them to encourage and sustain us.
I just saw your story on 60 Minutes Australia. I hope they can find some help for Johanna soon. Until now, I did not know such a thing ever existed. Random question, a bit personal. You do not have to answer. [Edited for propriety’s sake – Scott Watkins].
Best of luck to you all.
Blessings over you Scott! Bring healing Lord.
Thank you Julie!
Thanks for your continued blogging, Scott. I am always blessed and deeply moved when I read about what you and Johanna are facing. I can truly identify with what you said about struggling to have a sense of belonging. It’s a painful reality to live in.
The Hiding Place is one of my all-time favorite books.
Prayers for you and Johanna as you press on in the midsts of great suffering.
Hi Nicole. I spent a long time thinking and writing about this topic. I nearly gave up a few times because finding the words that seemed to fit our situation came so slowly. That being said, I am so glad you were able to identify with some of what I wrote! Thank goodness for books like the Hiding Place, which remind us that God’s presence and help are never out of reach. Thank you for your prayers.
Thank you for your writing. I felt the same way with my husband when he was ill.
Now I am caring for my uncle who is 93.
The difference is that he has no faith which makes it so much harder to do…
Hi Vicky. Caregiving is already so hard, to not see any expression of faith in God in the one you’re caring for would be devastating. May God comfort you in your painful obedience to Him as you caregive, may he bring you unexpected hope and peace amidst the grief. Blessings to you, too. – Scott
Thank you so much for sharing and being so deeply honest. What you share is very heavy but very important to share and bring people into. I really appreciate that you share how you are doing (as well as Johanna). I think it’s really important for me and many others to think more deeply about the impact this suffering has on you and also to draw from the wisdom and insight God has given you. I know writing and processing through things can be a grueling process but I just want you to know I really appreciate reading what you have to say and respect you deeply for how and what you share. I know Johanna appreciates so very deeply the many many ways you serve and love her and come alongside her and share in the suffering as her husband. I see Christ reflected so strongly in your marriage. John and I continue to pray for you both and care for you both very much!
Hi Jacy. Thanks for your kind words :). I do wish writing like this came easy, but as with most things worth doing, it doesn’t. Nevertheless, I am so glad you feel benefited by reading what I’ve written. It encourages me to keep thinking deeply about all that I’m going through while Johanna suffers. Thanks for your prayers, Johanna and I are so thankful for you and John and Heinrich!
Your writing is some of the most beautiful I’ve ever read. I think of you and your sweet wife often, though I’ve never met you guys. Your faith and your perspective on suffering are more encouraging than you probably realize to the watching world. Your genuine and raw way of writing what your thinking and feeling are a gift. I pray and hope that you and Johanna do get to see the day where you can fill those frames with memories and look back on this affliction.. at the same time i praise God that if all else fails you know and have eternal hope, and healing. Thank you for sharing your heart. Thinking of you both
Thank you Faith! Your kind words are encouraging. And you’re right, no matter what happens, God is our Rock. Hardships have helped us need and feel this more than ever before.
You and I have never met…but reading your blogs makes me feel like I know you and witnessing your devotion to my dear friend Johanna is truly uplifting.
Johanna and I were in high school together and though it has been so many years, and we weren’t great at keeping in touch, I think of her often. It is so painful to read how you both are struggling, it is an unimaginable life for the average person. Good thing you both are anything but!
Your strength and belief in God through it all is incredibly inspiring. It’s amazing now that I remember how Johanna and I (at age 16!) would connect over our belief in God, despite not sharing the same faith. We always had such amazing conversations – she is such a kind and beautiful person.
I pray for you and Johanna both – and I look forward to reading an update in which our prayers are accepted and there is ease. Do keep telling us about your journey and how Johanna is coping – is there a way to get in touch with her?
With much love and prayers for you both (and your families)…please also send Bekah my love and regards, she appears to be a real source of strength for you both.
Hi Ammina! It’s so good to hear from you! Sorry for my slow reply (I also sent you an email). Johanna has told me about you many times, and the friendship you shared. I shared with Johanna that you left this comment, and she was surprised and happy to hear about it. Blessings to you Ammina.
John and I are moved, challenged, stirred, shriven by your accounts of your encounters with Grace through so much suffering. We are awed into silence and stretched far beyond our capacity for understanding. Thank you for your testaments to being held by Grace while hidden by pain. God rescues you, God sees you and is with you and your precious wife. May God continue to give you strength, courage and his outpouring of love and power.
Hi Erin, it’s taken me much longer than normal to respond to your comment. Sorry for that! It was so good to see you recently. A real treat. Thank you for your gracious words, I am encouraged so much by them. Though each post takes longer than I’d ever expect to write, I’m thankful something useful can be gained by reading them.
So blessed by your words, praying for you and Johanna!
Thank you Kim! We are sustained in many ways by your prayers and I am grateful for them.
Thank you so much for your raw honesty and transparency through this trial. My wife has shared many of your posts with me and each one has contained parallel struggles to ours and transformative truths we needed. You are trully gifted with an ability to communicate through the written word. I thank you for using that gift, though you certainly could have chosen to clam up and suffer silently and no one could have blamed you. Yet you are allowing God to fulfill His promise in you – that you will be able go comfort others with the same comfort you have been comforted with. This is a severely broken world filled with severely broken people and sadly not everyone gets a miraculous interruption in the middle of or a happy ending to their specific situation. But it is through children desperate to see His face in the midst of it all that He works and reveals Himself to countless others. You are one such desperate child and I thank you again for letting Him use you as you share. You will never know how much you have helped so many.
You are so right, not many get the miraculous intervention they are hoping and praying for. It always leads to change, though. Desperate circumstances always change people, for better or for worse. Thank you for letting me know how my writing has helped you. It motivates me to keep at it, even when I can’t find words to write (which seems often these days). May God bless and comfort you as you journey through your own suffering.
I came across your 60 Minutes video only recently, because the title caught my attention.
“Allergic to Life? I bet it’s MCAS.”
I’m sorry I was correct. I thank God I have never known that level of reaction, and that only certain food triggers, and recently apparently spider bites, are my worst reactions. I will be praying for you and Johanna, that more answers and more relief can be found. I haven’t gone through all your posts at this time, but something I’ve recently learned about is Hereditary Alpha Tryptasemia (Syndrome). It is still being studied extensively, including ties to MCAS or not, but in case that’s not a route you’ve been down yet, I wanted to share. Blessings to you both.
Hi Danielle, thanks for your thoughts. As far as we know, Johanna does not have HAT because her tryptase levels are within normal levels. When she was first tested for elevated Mast Cell metabolites over a 24-hour period, she had elevated Leukotriene E4 and N-Methylhistamine, and a slightly elevated Chromogranin A (controversial marker, not always an accepted value).
I’m 19, and a biomedical student. I’ve heard about MCAS before but not so much learned about it. I stumbled across the video “ALLERGIC to LIFE” on youtube while searching for medical documentary to watch and i am so glad that i clicked on this and managed to learn so much from it. I was curious as to what happened after the documentary, like if there was any updates and went to google for your wife, Johanna. It brought me to your blog and i’ve read at least 5 of your posts and each time i read the more my heart ached, i could never know how you would feel but i believe it must have been very difficult. Johanna is very blessed to have you. Your posts also taught me that despite having thousands, millions of medical practitioners, be it nurses, doctors or researchers out there, the best care giver is still the one who understands the patient the best and the one that loves the patient the most.
I’m studying to become a doctor/researcher one day, and though my interest isn’t with MCAS, i believe that a researcher out there with better capabilities will soon come out with a solution to all of these problems or at least something to help relieve your wife off her pain and that both of you will be able to embrace each other again soon.
I apologise if anything i said here was not right due to the lack of research and understanding or was upright offensive to you.
May god bless you and your beloved wife Johanna.
Scott, I am sure You get overloaded with well intentioned advice. A comment on the Caringbridge site caught my eye about phenergan suppositories. Both phenergan and compazine come in suppositories. I wonder if a trio of rectal Valium, (or another benzodiazepine) ,rectal Benadryl, then phenergan or compazine could bring some relief. I have had IV propofol three times for surgery, and two episodes of afib (zapped), and felt like I got a few hours of vacation from MCAD. When Dr. Afrin heard that Ativan was very helpful as an adjunct to severe uncontrolled pain after surgery, he added it to my MCAD cocktail and it does help. A good side effect of benzodiazepines would be to make Johanna’s suffering more tolerable. Praying for you always.