Reflections on Loss and Guilt

For the last seven years, my wife Maggie battled neurosarcoidosis, a chronic autoimmune condition where the immune system mistakenly attacks the central nervous system. Each flare-up crippled her ability to live independently. The treatments aimed at managing her condition led to Type 2 diabetes, weight gain, water retention, and other complications. These medications compromised her immune system, as well as her kidney and liver functions, prompting her doctors to prescribe even more medication to address these side effects.

Maggie faced additional challenges such as cardiovascular disease—having suffered four strokes within a year—and pulmonary hypertension, in turn necessitating more prescriptions. Neurosarcoidosis stripped away her memory, speech, and even her grasp on reality at times. The strokes further exacerbated her difficulties, robbing her of strength and balance. By the end of her life, her medication list was staggering: three drugs for her autoimmunity, two for blood pressure, three anticoagulants, and others for diabetes, acid reflux, cholesterol, and water retention.

Yet, amid all the medical struggles and indignities—constant poking and prodding, numerous scans—what gravely upset Maggie was the erosion of her independence. It wasn’t just about being unable to take a spontaneous drive to meet friends; it felt much deeper than that.

Maggie had always been vibrant and caring—an activist, an ASL interpreter, and a social worker who dedicated her life to helping others. As her independence dwindled, my sense was that the world around her felt increasingly constraining. She spent long hours in her recliner, which essentially became the center of her universe.

Honestly, it frustrated me that she didn’t seem to resist the narrowing scope of her life. I confronted her about avoiding her medications, finding pills hidden behind cushions or tucked away in clothing. There were moments when she’d come home intoxicated, and I couldn’t understand why she wouldn’t take care of herself. The questions spiraled in my mind—why didn’t you understand the gravity of your situation? I made myself a victim in those instances, sometimes turning her love for our grandchildren into guilt. Wouldn’t you want to see them grow up?

During my rants, Maggie often stayed silent, responding only when I was done venting. She would say, “I love you too,” but her quietness felt heavy. What does fighting back mean when you’re grappling with an unrelenting illness? The reality was that Maggie wouldn’t improve; at best, she could maintain her state. Should I demand that she keep fighting? Was it right for me, healthy and unburdened, to project my expectations onto her? Maybe her refusal to take medication was a way of asserting the little independence she had left. Hiding sweets might have offered her tiny moments of joy in an increasingly controlled life.

I rationalized my insistence by telling myself she couldn’t think straight due to her condition. But was that entirely accurate? There were plenty of choices she made that seemed sound—getting out to a dollar store or enjoying her morning café con leche. Was my justification merely a convenient excuse for my own frustrations?

I grappled with where to draw the line, trying not to hover excessively. The truth is, you can’t help someone who isn’t ready to seek help. Yet that notion seemed cruel because Maggie was not just anyone; she was my partner for 36 years. Nothing could change that bond.

Then came a pivotal moment on Saturday, August 24, 2019, when Maggie had another stroke. I was in the living room when I noticed her unusual silence. Walking into the bedroom, I found her in the recliner, trapped in a state that made it clear what had happened. Her eyes were wide, her speech slurred—a last glimpse of the person I loved. The paramedics arrived, and though she was still conscious at that moment, she slipped into unconsciousness before reaching the hospital.

That May, we had been in a lawyer’s office, preparing our estate. We were prudent about our living wills—no machines to keep us alive artificially, we had said. The stark contrast between that day and the following events in ICU, watching her vitality fade organ by organ, was profound. Initially, Maggie was able to breathe independently, but hope dwindled as doctors warned of the severe damage from her stroke.

By September 2, her body began to shut down. Despite medication aimed at stabilizing her heart and increasing oxygen absorption, she developed pneumonia, exacerbated by her immunosuppressed state. The struggle was relentless, and soon, she was no longer able to breathe on her own.

Early on September 3, overwhelmed, I whispered, “Stop.” A nurse brought in the DNR paperwork. At that moment, the shift from theoretical discussions we’d had about being each other’s health care surrogates collided with cold reality. I affirmed what I believed was her wish. I was awake for over 24 hours, witnessing the persistent yet futile attempts by the medical staff to prolong her life. Signing that form felt strikingly mundane.

Three years later, I still find it hard to speak about that moment. After her passing, I called my daughters and sisters-in-law, delivering the news with a sense of disconnection. My emotions felt strangely muted, even while those around me wept. Why couldn’t I grasp my own feelings?

Afterward, guilt enveloped me. I should have supported her better, perhaps by indulging her in small joys rather than pressing her to conform to my expectations. Reflecting on a text from Maggie expressing her loneliness struck a deep chord. In moments of frustration, I’d distanced myself by sleeping on the couch, prioritizing my discomfort over hers.

As we held a memorial for Maggie two weeks after her death, I delivered the eulogy, fatigued but more focused on her life than my inner turmoil. Still, the weight of guilt loomed over me.

Our family traveled to Puerto Rico soon after for another memorial. I wasn’t ready for the social interaction and instead laid alone, succumbing to tears. In that solitude, I wrote a poem grappling with my loss, filled with an emptiness that only her absence had carved out.

Years have passed since Maggie left, and while I work on moving through my guilt, reminders of her still sting. But they no longer paralyze me. That feeling of guilt reminds me of the time I potentially added to her sadness. Can I forgive myself? Can one love without causing pain, especially when the loved one is already suffering? Perhaps love isn’t the only thing we need, but it’s all I have right now—and that realization is daunting.

I often think back to my childhood, when my father encouraged me to warm up the car on cold winter mornings, a mechanical struggle that finally yielded when the engine roared to life. I’m trying to reignite that old flame within myself as I navigate this new chapter of life.