“High school sweethearts.” It was a practical shorthand for explaining how we’d met. But as our marriage accrued years and then decades, the label took on the weight of cumulative approval, often provoking surprised admiration or requests to divulge the secret of our success.
Satisfying as it was to be on the receiving end of the “gold star for commitment,” as the relationship wore on, I wondered about the line between loyalty and low standards, constancy and fear of change. Early on, I believed our frequent, heated arguments reflected a healthy, open dialogue. But after years of repeatedly picking the same scabs, our fearless engagement seemed more like tedious carping. I found myself a psychotherapist.
I knew that Brian would not appreciate my delving; loyal to a fault, he had little tolerance for anything short of unquestioning devotion. I often remarked (and he did not disagree) that he would love me just the same if I gained 400 pounds and became a neo-Nazi. This lack of conditions sometimes made me question my relevance—was he devoted to me, or to some idealized concept of love?
I also came to view the romantic concepts he was fond of—“destiny” and “soul mates” —as a smokescreen disguising his refusal to negotiate practical matters. I appreciated that he never forgot our anniversary, but eventually longed to be able to approach the nuts-and-bolts – cleaning the toilet, refinancing the mortgage, making dentist appointments – as partners. His silly nicknames for the two of us summed up the dynamic perfectly: “I’m Idea Guy,” he would say, “and you’re Action Girl!” As much as I valued my “get-‘er-done” practicality, I worried that my inability to match his lofty devotion reflected a fundamental personal deficiency.
Eventually, I asked for a separation. Our two teenagers remained in the apartment with their dad. A dear friend welcomed me to crash on her couch, and I eventually upgraded to a one-bedroom railroad in the neighborhood. My relief at not having to feign a certainty I did not feel was immediate and unambiguous. But our day-to-day remained entangled: I would rendezvous with the kids at “dad’s apartment” after school, often cooking them dinner and (to my friends’ endless frustration) tidying up before I departed. When Brian and I met occasionally for dinner or drinks, he focused on our eventual reunion, while I waited uneasily to feel some glimmer of enthusiasm about that possibility.
Reconciliation was attractive for many reasons: divorce seemed complicated and costly, I missed his parents and siblings who had become my family over our 30 years together, and I worried about the effects on our children. And I could not discard the idea that the breakup was my personal failure. Maybe I was superficial, and monogamy made me feel boring. Maybe my expectations of marriage were wildly unrealistic. Maybe, if I looked hard enough, I would find the source of the problem within myself -- and then I could fix it.
During our time apart, Brian lost a shocking amount of weight and began to struggle with activities like skiing and surfing which he had mastered in his teens. Most people, his doctors included, attributed this to our breakup – but after a year of seeking solutions, a few weeks before his 45th birthday, he was diagnosed with ALS.
By September, I had moved back in. I recall some of the underpinnings of that decision: How could I prioritize my comfortable, emotional distance, while leaving the kids to face their dad’s deterioration alone? How could we justify two rents when he would soon be unable to work? I was an experienced hospice nurse – surely, this was a sign. But underscoring all of these rational considerations, I felt an almost palpable clarity: “This must be done.”
We spent much of the fraught and teetering early months lying entwined, wallowing in our made-for-TV drama: estranged lovers reunited by crisis only to be forever torn asunder. But our conflicting concepts of love and partnership fed divergent fantasies about the future. He hoped the crisis would illuminate a spiritual connection that had been subsumed by the day-to-day, that living together would be a stepping-stone toward a deeper reconnection. I hoped the emotional crucible might reveal the root of our discord so I could start working on the solution. Both of us clung to the belief that the future could include an “us.”
In some version of this story, that bit of overlap in our fantasies might have been enough. But time was not on our side. As the days became months and then years, his idealism and my pragmatic determination were equally strained by his disease. His trajectory seemed uniquely maddening, robbing his function in unpredictable increments that required constant and increasingly-complex adaptations. It was Sisyphus, but with a crueler twist: as we rolled the boulder up the mountain, we knew that next time, the boulder would be larger and the incline steeper.
Not surprisingly, Action Girl—with her clinical experience and high tolerance for tedium -- headed up the response effort. When it became hard for him to walk, I found a cane that unfolded to provide a temporary perch. Eventually, that was replaced by a motorized scooter, then by a portable electric wheelchair called a “Zinger,” and finally by the 375 lb. high-backed power chair that did everything but the vacuuming. Each step was a tortuous slog: How much does it cost? Will insurance cover it? What billing code do we use, and where do I have the doctor fax the prescription? Is it light enough to carry up and down the stairs? When he became fully wheelchair dependent, and even slept in his chair, I added wheelchair repair to my skillset: the maintenance plan did not include emergency service when the chair got stuck in the forward-tilted position at 6 pm Friday.
My hopes for positive change eroded. I came to resent his inability to recognize that my caregiving efforts were motivated by love, the angry reminders that they were a pathetic substitute for the passionate connection he craved. “I don’t want a NURSE,” he would seethe, “I want a WIFE!” In the end, our post-ALS partnership collapsed from the same issues that had plagued us before. We hunkered down and adjusted as best we could: learned to live with the hiss-and-slurp of the suction machine with its canister of blood-tinged phlegm that I always forgot to cover when friends came; to the stinky, acrobatic maneuvers required to get him to the toilet using a mechanical lift; to the feeding pump which would randomly disconnect overnight, drizzling the whole liter of sticky Ensure into his lap. We had to call 911 twice--once for pneumonia, once when his vent battery died and I slept through the alarm. And each time, with aggressive medical intervention, he pulled through.
I tried sometimes to broach “goals of care” – if he were unable to communicate, what life-prolonging efforts would he want? Would he ever not choose “everything possible”? These conversations usually ended with him accusing me of wanting him dead. And I had to wonder. I certainly longed to stop hearing him say “I hate my life!”; to escape his resentful comments when our family enjoyed pleasures (a hot cup of coffee, homemade cookies) that he could no longer share; to watch a movie without having to suction him every ten minutes. No, I did not want him to die, exactly – but I did want a different kind of life, which seemed elusive as long as he was alive. I was painfully aware of the conflict of interest, and as his speech deteriorated, I worried more and more about having to make critical decisions on his behalf without knowing what he would have chosen.
So when we had to call 911 for the third time, I was relieved that Brian was still able to communicate. Initially, he chose the medical full Monty: intubation and then a tracheostomy. But his recovery was agonizing and prolonged; at some point, it was clear he was considering ending his life by turning off the ventilator. Half of these “discussions” were hard-fought: I would call out each letter of the alphabet until he nodded assent, allowing him to communicate letter by painstaking letter. He talked with family, friends, and the hospital staff, and eventually decided to “withdraw care.”
His final day was a Saturday in October. The timing was lucky – with Delta waning and Omicron still waiting in the wings, the hospital allowed our family and some close friends to gather. Brian was not easy to sedate, which gave us some special hours there at his bedside: we played music, shared stories, laughed, cried, and even danced. He joked and smiled more in those few hours than he had in many years. Eventually, he lapsed into sleep and the respiratory therapist began to turn down the ventilator settings. The atmosphere in the room was somber and unsure and expectant. In his final minutes, Brian became suddenly restless; his eyes flew open, his gaze darted from person to person, he looked frantic and frightened.
I rushed to the nursing station to demand more sedation, and as our nurse was administering the morphine, I climbed onto the undercarriage of the bed behind Brian and leaned over the raised mattress. I held his head in my hands and put my mouth next to his ear, whispering an improvised comfort mantra “You’re OK, there’s nothing to be afraid of, this is the very end of the journey, we’re with you till you step over, you’re going to see Audrey and Mom-mom again, shhhhhhh…” And, finally, “You are loved, you are loved, you are loved...”
In the days after his death, I worried some about my final words. Why “You are loved” and not “I love you”? I wondered if my reserve had caused him pain when he most needed comfort. But I eventually found peace in the fact that those final words somehow felt channeled rather than chosen, and “you are loved” expressed a larger interconnectedness that transcended our twosome. In the end, I think we both understood that love was the only word for our deep, if deeply imperfect, connection.
Julia Faidley is a midwife and former hospice nurse who loves the written word in almost any form: novels, memoirs, poetry, seed catalogs, recipes. As a reader, she is delighted when words reveal a not-yet-considered perspective. Her goal as a writer is to delight and move others by offering a fresh perspective on the familiar.