Guest Voice: Love protects our marriage in the ‘Suffering Wars’ of ALS
By facing this crisis together, we experience a deeper emotional closeness
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My husband crunches on his granola and sips his tea. I watch the rhythmic drip of my liquid “breakfast,” a bag of nutrition tethered to a feeding tube. We share the same couch as always, but the distance between our mornings has grown vast.
I flash back to our wedding. We held hands and easily made the vow to love each other “in sickness and in health.” It was a promise made in the flush of optimism; we hadn’t a clue how we would truly be tested.
When a terminal illness inserts itself into a marriage, that vow — once captured in glossy photos and radiant smiles — transforms from a distant promise into a daily, visceral reality. It is a seismic event, shifting the landscape of a comfortably shared life into foreign territory, fundamentally altering the dynamics of intimacy, identity, and hope.
“But what about all our plans?” I asked my husband right after receiving my ALS diagnosis in 2024. “We’ve got places to go, things to do, and our grandchildren to consider!”
Our future had always been a collaborative project, built on work, beloved family, layers of friends, retirement dreams, and gobs of travel. Now, with the inescapable reality of increasingly impairing symptoms, that imagined timeline has been severed and is dangling dangerously.
One question haunts us both. How do we move forward and cherish the time we have, while navigating anticipatory grief and a future defined by loss? We struggle with this question in different ways.
“Let me do that for you,” my husband frequently offers. As a kind man, he shows his love through action — a way to channel his fear of the future into something productive.
I resist, pushing the scary future away, not wanting to be taken care of just yet. I know that once we fully devolve into “caregiver” and “patient,” the equality we have enjoyed for so long will vanish. He will shoulder the weight of my physical care along with every other aspect of our lives, expected to do so without complaint or fatigue. After all, he is the “healthy one.”
In that future, my role is that of the passive patient: quietly grateful, seeking peace, and wrapping up the loose ends of my life with grace.
But I don’t have a single passive cell in my body. I have lived a life of fierce autonomy. I loved my work, my financial independence, and the power to make big decisions hand in hand with my husband. We were confident we could do anything if we did it together. We just didn’t count on a tectonic power shift — one that leaves me sidelined from the responsibilities I loved, from planning dinner menus to simply chatting with our children.
Sometimes the stress of it flows around us like steaming lava.
United against ALS
“Hey,” my husband asked me recently after a movie. “What did you think? Did it deserve all those awards?”
Before my illness, I would have dived into an analysis of the script and the acting. But with my speech stolen by bulbar ALS, fury filled my body. I jabbed a finger at my impotent mouth, rolled my eyes, and growled at him. I was certainly not at my best that evening.
But he didn’t give up on me, not that night, not ever.
As we negotiate the daily conflict between maintaining hope and facing the reality of ALS, we have found that the disease has stripped away all superficiality and left behind the core of our commitment. ALS may take my body and our “someday,” but our marriage is not defined by just those things alone. It cannot dismantle our history or the rich life that we have built and shared.
In fact, by facing this crisis together, we are experiencing a deeper emotional closeness. Our communication is more honest, even though it happens through a screen now. We talk about our fears and our legacies with a raw necessity we never felt before. It is the two of us against this monster of a disease; we are scared and vulnerable, but we are united.
We are fellow soldiers, marching into the unknown, shoulder-to-shoulder, using our love and shared wisdom as armor in what I’m calling the “Suffering Wars.”
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