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.