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.

Psalm 139:9-10

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.

Author: Scott Watkins

My name is Scott Watkins and I'm married to an incredible wife, Johanna. She suffers from a severe form of Mast Cell Activations Syndrome (MCAS). My website is all about our lives, and mine particularly as a caregiver, husband, and follower of Christ.

16 thoughts

  1. 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.

    1. 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!

  2. 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.

    1. 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.

  3. Thank you for your unwavering trust in God. Praying for strength for both of you as you live in the place you find yourselves.

  4. 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.

    1. 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.

  5. 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…

    1. 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

  6. Dear 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!

    1. 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!

  7. 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

  8. Scott

    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.

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