“Uncle Scott, where are you going?” my young niece asked me as I was going downstairs. 

“I’m going to take care of my wife, Johanna.  She’s very sick.” I replied.

In earnest she responded, “I can come help, too! Please!”

For my niece, this was the endearing cry of missing out, a response to watching someone leave for somewhere you cannot go.  For me, this moment was a jarring reminder of the disjointed realities of my life.  What my niece had asked me was perfectly natural and simple.  Why wouldn’t she be able to come with me and care for my wife, her aunt? Her sensible request heightened the sense that I lead a double life.  A life split between the not quite normal – seeing friends and family and generally being out and about without my wife – and the tragically strange – spending time with, caring for, and loving my wife forced into isolation due to an extreme illness.  This double life creates a constant tension, almost a guilt.  In every situation Johanna would ostensibly be with me, were she healthy, I often experience a deep discomfort, a mix of grief and guilt.  I have one foot in the outside world where my niece comes to my house to play.  I have the other in the world of exile, where Johanna remains isolated and trapped by the realities of her tragic illness.

Exile is not a word I would have used in the past to describe Johanna’s reality.  In ancient Greece and Rome, being convicted of a serious crime (for citizens of a city-state or nation) sometimes included a choice to be exiled instead of being executed.  For me, this used to feel like a false choice.  Who wouldn’t choose exile?  To leave with one’s life seems much greater than to have no life at all.  The punishments seemed wildly incommensurate.  Yet, my experience over these past years has me rethinking this sentiment.  Johanna’s continued isolation and suffering have made me consider the things that make life meaningful.  The anguish of her separation from so many aspects of normal life have shown me that there are kinds of living which can feel like a continuous dying.  I felt I was surprisingly and unexpectedly given new words to express this sentiment after reading the book ‘After Virtue’ by Alasdair Macintyre.  In one section he considers ancient views on what constitutes a meaningful human life, views that are less plain to us in the modern world today than in the ancient past,

“In the Philoctetes it is essential to the action that Philoctetes by being left on a desert island for ten years has not been merely exiled from the company of mankind, but also from the status of a human being: ‘You left me friendless, solitary, without a city, a corpse among the living.’ This is not mere rhetoric. For us the notion that friendship, company, and a city state’ are essential components of humanity is alien; and between us and this concept lies a great historical divide.”

Understanding Johanna’s suffering as a kind of exile has heightened my sense of her predicament.  Johanna has felt, and I have felt to a lesser degree through her, the great loss and burden of so much of life passing by around her, while her own life seems stuck in a stasis of suffering.  Her suffering continues to be grievous.

One of the most unexpected aspects of Johanna’s ‘exile’ has been the change in our experience of the passage of time.  In the past I never realized how the rhythms of the seasons and the celebrations of life make sense of time.  There is purpose and progression in the tangible experience of the seasons.  So too, with the celebration of a niece’s or nephew’s birthday.  To miss these events is not just to miss the joy of being with family, or to miss the wonders of leaves in the Fall, but to miss a sense of time ‘going somewhere’.  When Johanna saw pictures and heard about her nephew’s recent birthday, we both remarked how it seems that time has frozen for us, while it passes by all around us.  This was more than just an acknowledgement of the grief that she had missed out on something beautiful and meaningful, it was the admission that the very experience of life and time have seemed to cease.  To empty life of its rites, its experiences of celebration, its experiences of shared grief, is to be more than missing out – it is to feel removed from it entirely.

My experience of this exile is obviously different than Johanna’s.  Unlike her, I stand between these worlds and try to navigate between them.  The loneliness and separation Johanna experiences changes what would otherwise be normal, my everyday interactions with friends and family, into something which feels alien.  Conversely, the joys I experience in the outside world heighten the jarring ‘wrongness’ of Johanna’s continuing isolation and illness.  I sometimes feel like my life has been sliced in half, that there are two ‘Scotts’, that neither the world of Johanna’s exile, nor the world outside feel like places of stability.  Nowhere does this become more apparent than when my niece comes over and asks why she can’t come with me to see her aunt.  To be unable to visit and see a family member who is trapped in a room downstairs makes little sense to her, and in these moments it doesn’t make sense to me either.

Though exile is a new way for me to understand Johanna’s suffering, it is not a new concept in antiquity.  Exile is a constant theme throughout the Old and New Testament.  From Adam and Eve’s initial expulsion from the garden to the early church’s call to be brought in to the family of God, the Bible is filled with the promises of restoration, for the broken to be mended, for the far off to be brought near.  As in the book of Isaiah, chapter 49,

Thus says the Lord:

“In a time of favor I have answered you;

    in a day of salvation I have helped you;

I will keep you and give you

    as a covenant to the people,

to establish the land,

    to apportion the desolate heritages,

saying to the prisoners, ‘Come out,’

    to those who are in darkness, ‘Appear.’

They shall feed along the ways;

    on all bare heights shall be their pasture;

Sing for joy, O heavens, and exult, O earth;

    break forth, O mountains, into singing!

For the Lord has comforted his people

    and will have compassion on his afflicted.

More than ever I share these longings which fill the Old Testament.  In the meantime I wait for Johanna’s exile to end, and continue to find our own story more and more embodied in the stories of the Bible.  We endure, knowing the Lord will ultimately have compassion on his afflicted.   

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.

17 thoughts

  1. Thank you, Scott, for sharing a glimpse into what it is like walking in and going between these two worlds. Exile in this way makes a lot of sense as it relates to your journey. I think I’ve tasted that a little in life, but it is a constant for you guys. Thank you for sharing your insight and struggle. You and Johanna continue to be in my prayers. The Lord hears. May He act on your behalf soon.

    1. Hi Nancy,
      Thank you for your prayers and kind comment. I love your phrase, ‘The Lord hears’. It’s easy to feel otherwise in the midst of waiting.

      1. You’re welcome, Scott. I hope the truth is a comfort in the midst of it all. Keep holding on to the Lord. Thank you so much for sharing, it helps me know better how to pray.


  2. Thank you, Scott, for sharing your precious gift. Love, hugs and prayers for both of you always.

  3. Nick and I continue to think of you both and pray. How are your symptoms doing Scott? I saw you were struggling after your vax.

  4. Praying for you and Johanna, for your different paths in this and for the faithful companions, who along with Jesus step into the experience with you.

  5. Hey Sir,

    You two popped into my thoughts and wanted to reach out to see how things were. Please feel free to reach out if you’d like, as I’d would love to catch up and also offer help if possible with winter approaching. If not that’s fine too and I’ll continue to send my best your way.

    Best Regards,

    Jon Swenson

    1. Hey Jon,

      Great to hear from you. It’s obviously been a while since I’ve updated this blog, but I’m glad you commented here!

      I sent you a separate email!
      – Scott

  6. Scott, it’s been so many years since I heard your story. And tonight before I went to sleep I was asking me how you are. I know it’s difficult to answer that question, I just want to tell you that I send you a sincere hug.

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