There are days I linger at my desk. Around me, silence steals in; colleagues offer well-wishes for an enjoyable evening and, as I watch them leave, I linger.
I did not intend to be the breadwinner in our little family of two. Between infertility and the onset of my husband’s physical pain and challenges, the monotony of the nine-to-five carved its way into my soul. Infertility left behind the dream of being a stay-at-home mom; witnessing my spouse suffer, unable to physically meet the demands of daily work carried me into full-time work away from the home. Each morning, as I leave him behind to manage his pain, I stumble my way into a life I did not choose.
And yet, there are days I linger at my desk.
Where is grace when the suffering is chronic?
A cursory internet search for spousal care-giving provides little results. Self-care, they chant, waving placards against exhaustion and lethargy. There are few words to support the spouse watching their beloved suffer. How do we carry on when our own helplessness scrapes us thin and raw, and we have so little to offer the one we love most? What is faithfulness when your spouse suffers? Where is grace when the suffering is chronic? Where, in the storm that does not end, do we find shelter?
We married on a hot August day, full of joy and anticipation. I blistered to a brilliant lobster red during our photos, but I felt like a princess in my white dress. We declared our vows before God, family and friends: to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health. We spoke the words without knowing what the future held. Though that’s how it ought to be on a wedding, I found myself wishing someone would have warned me that ‘sickness’ wasn’t just the occasional flu, and that when the negatives of the wedding vows arise, they come not one by one, but in a painful, overwhelming onslaught.
Len’s pain began about two years into our marriage—manageable but inexplicable. For two years we wandered through doctor’s offices with no answers or solutions, until they finally ordered an MRI. That night in October 2007, I held myself still in the waiting room, alternating my gaze between the slow moving hands of the clock and the frantic patient beside me, trying to calm herself for her own scan. When the frazzled radiation tech appeared and beckoned me back to the MRI suite, a quake trembled through my bones. There was Len, on the phone with someone, and I stood helpless trying to grasp the situation.
Tumors. C1/C2. Surgery.
For the first time we heard a diagnosis that left us baffled: neurofibromatosis. Despite waiting four months for his first MRI, within the following three days Len had several more MRIs to confirm the diagnosis and determine the extent of the progress. We sat through phone calls, neurosurgeon appointments, gathering what information we could, grappling with the diagnosis. Len had been born with neurofibromatosis (NF1), a genetic mutation of the tumor suppressing gene we’re all born with, causing tumors to grow wherever he had nerve endings. MRIs had confirmed multiple tumors along the length of his spine, two in his neck, and none (thank God) in his brain. Surgery to remove the C1/C2 tumors was hugely successful, though it did nothing to address the pain that caused us to seek the MRI in the first place.
The confessions tumbled.
The diagnosis and chronic pain have lingered. The pain has robbed him of many of the things he longs to do: canoe, golf, play tennis, camp, roller blade, and, worst of all, work. Worse than not being able to find effective pain management was the damaging grief of not being able to work. While I wrestled with being the breadwinner and caregiver, he flogged himself for the inadequacy of providing. I did my best to reassure and he did his best to believe me, but in the days that followed, we descended into a dark, lonely space.
I launched into warrior mode: brave, stalwart, defiant. It was a strategy with limited sustainability, and I started catching cat naps in my car on my lunch break. Friends noticed my increasing state of anxiety and exhaustion. My doctor threatened to make me take a leave of absence. I begged her not to do that, and in the face of her reluctance, I began canceling my appointments. The experts could say what they wished about self-care: I knew if I paused for too long, the friable threads of this life I was barely holding together would snap. She insisted I find therapy, and I balked: who was qualified to hear my thoughts, fears, and anger and not condemn me?
Eventually, through the brave persistence of loved ones speaking into my darkness, I found myself on a therapist’s couch biting back panic. I chewed on my lip as the counsellor assured me nothing spoken would leave the room. I could speak my mind and find safety and freedom. I stood on a precipice, gulping the courage to open my mouth and share and, without permission, the tears started. The confessions tumbled:
I want to run away.
I can’t do this.
I love him, but this is too much.
I didn’t sign up for this.
What if he dies?
I’m so tired. I just want to leave so I can sleep.
I feel guilty all the time.
I can barely leave the house.
I don’t want to be home.
Where the hell is God?
Therapy was no magic pill. I was stripped raw, bleeding and wounded. The words I spoke into existence had only ever festered in my heart, and each admission felt like a deep stab of betrayal. I showed up, week after week, pouring out anger, frustration and fear. It seemed that the cauldron of resentment I had been stirring was bottomless. Resentment over my inadequacy to help. Fury over God’s refusal to heal. Bitterness over loneliness, responsibility, misunderstanding, exhaustion and jealousy. All of these simmered within me, noxious and destructive.
My counsellor sent me to the Psalms to find God. For months the only words I could pray were directly from Psalm 25:16-18:
Turn to me and have mercy, for I am alone and in deep distress;
My problems go from bad to worse. Oh, save me from them all
Feel my pain and see my trouble. Forgive all my sins.
As I stumbled painfully through the Psalms, I found myself lingering in those composed in a minor key. More than a third of scripture’s songbook includes songs of lament, and I wrapped them about me like a cadence of comfort. The rise and fall of honest emotion resonated within me, a tympani sounding the depths. As Walter Breuggeman writes, the psalms of lament are “Israel’s foremost word on pain and Israel’s most daring theological act . . . Israel articulates its pain publicly not simply as a cathartic activity, but in order to make the pain into public business with God.”
Voicing those words became a step toward freedom. Lament will do that: force you to acknowledge your limitations and the overwhelming inadequacy of your love. My beloved was breaking before my eyes, and in my urgency to hold all things together, I ceased quietly naming the broken things as broken. Rediscovering lament shifted the axis within me, tipping me gently back towards God.
I have no mind-blowing takeaway from therapy, although the coping skills I acquired settle me time and again. If I would sum up some vague lesson I took away, it would likely be this: “It’s okay.”
It’s okay when it hurts.
It’s okay that I don’t understand all the mysteries of God.
It’s okay to lower my self-expectations.
It’s okay for things to fall apart a bit.
It’s okay for burdens to be shared.
It’s okay to voice the hidden and the ugly.
As I continue with my dual role of wife and spousal caregiver, I can sit quietly without having all the answers. I would still choose to have him healed and whole. I would prefer not to be the breadwinner while managing a household and caring for a chronically ill spouse. I would also choose to remain, to be present, to cherish moments of laughter, and quiet exchanges of physical touch as we lean into sleep. Therapy made nothing about spousal caregiving easy, but that’s okay. My daily posture of lament is no alchemist’s brew of trouble-free living. I don’t imagine it’s meant to be easy. Should I ever reach the point where I am unfazed by my beloved’s suffering, it will be time to leave.
And so, sometimes as the work day draws to a close, I linger at my desk. I pause, offer myself a few extra moments. I know what awaits me at home, after all—the man I love and his life of pain. I hesitate, breathe low, soft prayers to the God I don’t fully understand but who quietly proves himself to be good, near, and faithful in the difficulty of this spousal caregiving life. I square my shoulders, slip into my jacket, and head home.
It’s not the life I would have chosen, and it’s okay.
Cover image by Jude Beck.