“Oh, I fell up the stairs again.” My wife tags her accidents on the end of her story whenever she wants to brush past them. “It was nothing. I never hit my head falling up the stairs, only down.”
I don’t push the issue when Liv doesn’t use her cane, not even when she’s limping or stumbling. I can’t force her but if I insist, she succumbs to guilt and retrieves it from the trunk. Her doctors want her to sit, in a wheelchair, at home, on a stool in the kitchen — always sit. Sit down for the rest of her life, avoiding concussions and fractures. But they aren’t there to witness the costs or carry the responsibilities.
A caregiver is a person who cares for someone’s specific medical needs. In our case, Liv has auto-immune conditions damaging her brain and organs in unpredictable ways. Some days she can’t walk, others she is partially blind, and some days a cold breeze aggravates her trigeminal neuralgia, completely incapacitating her. But being a caregiver to a spouse is different from caring for child or parent, and being a young caregiver to a young spouse is especially rare. It requires managing our relationship, her long-term health, and its effects on my kids. We are not sipping iced tea in retirement watching the sunset. Liv has aspirations, two school-age children, and plenty of debt. Asking my wife to sit is not inviting her to an early retirement after a life well-spent. It is joining the chorus of outside voices depriving her of a future.
What does that make me? Am I a good husband or a bad caregiver? Who’s to say limiting her mobility is better than risking a concussion? A weekly fall, or never walking again? How can I justify pressuring her into taking measures that limit her life today for only a vague promise that they may improve future days?
I didn’t arrive here through laziness or apathy. Twelve years ago, young and scared, I spent the first years of marriage dissuading her from school and work. I watched the stress cause relapses and damage her body. I saw her push herself beyond her limits and wake up paralyzed or partially blind. I saw how failure ate away at her self-worth. But I didn’t understand. I resented her for subjecting herself to misery and quickening her demise. She desperately explained: “you aren’t asking me to take it easy, you are asking me to give up on life.”
Am I a good husband now? I respect and defend her decisions. I support her in going to school and work even when I wish she wouldn’t. I make dinner and do my work early so I can get the kids to school when she needs extra sleep. I recognize that even though she is a wife and mother, she is a person first. I listen when the stress and pain make her lash out and scream. I ask her what she needs and try to provide it.
Or am I a bad caregiver? I let her take on more than she can handle, knowing it has short and long-term consequences. I can see when stress is causing a breakdown, but I can’t stop it. I can’t keep track of her dozens of medications. I don’t resist for fear of being unsupportive or oppressive. I prioritize our relationship over her health and safety.
Maybe I’m both, teetering on the line and trying to maintain balance. It would be easier to sit with everyone else, those that want her to relax and give up. I could pretend to believe that she’s better off, but I’d be reinforcing the limitations of her disease, chipping away at her spirit as it chips away at her body. So I’ll stand with her. I’ll hold on to lingering guilt and hope it leads to a joyful, fulfilling, and longer life together.
