The Squeaky Wheel

This is Part Two of my two-part series focusing on a recent experience with the American health care system during the time of COVID-19. 

Part one was entitled, “I Stole My Husband” (click here if you missed it.) and might have mentioned how I broke a couple of hospital rules by kidnapping my husband for a couple of hours. Part two expands on this experience and muses about the intimacy involved in caregiving.

Rules provide scaffolding for society. Institutions, like medical facilities, requirethem to keep people and employees safe. I’m grateful for protocols designed toprotect patients. But some of the fine print rules beg to be broken. I also draw a distinction between protocols and obsequious etiquette. Medical personnel bow down and seemingly pay homage to doctors. I like most doctors. Two of my dearest friends who helped me navigate our cancer scare are doctors. But the colorectal surgeon who removed the tumor from Jim’s abdomen during his second hospitalization behaved more like Napoleon than someone who took the Hippocratic oath to do no harm. If we saw him, it was never without his entourage of young, beautiful women. “The surgery was more complicated than I anticipated. There were multiple growths. The pathology report should be back in seven to ten days. I inserted a nasogastric (NG) tube down his nose into his stomach.” And then he left the surgical waiting room and me with my mouthagape. “I need Xanax,” I pleaded in my 911 call to my friend, Ann.

Pre-op Jim

My husband was a mess. He choked and gagged on the nasal tube for two excruciatingly long days. I begged nurses to contact the doctor. A STAT x-ray was performed to determine the placement of the tube. It had never made it down to the stomach, but was tangled in his esophagus. The hospitalist finally ordered its removal. The surgeon did not make an appearance until the following day. I resorted to buying gift cards for the nursing staff, hoping the bribe would keep some of their focus on room 321.

It was an awful experience. Access to medical care during the time of COVID was a nightmare. Our emotions teetered between euphoria at good news and despondency at scary news. And then there were the visits from Anxiety, waking me up every morning at 4:30 murmuring her morose messages.

I do believe in the concept of God. For some reason, however, my lips refused to utter prayerful words. But other people did. There were prayer chains from Southern Illinois to Winter Park, Florida. I question whether outside prayer works. But just knowing they were praying was as comforting as a warm bath. God truly manifested herself through the love and kindness of friends. Cards, cappuccinos, even cough drops were dropped off, as were meals and bushels of fruit. We felt lifted up and cared for. 

There is a caveat to all the caring, however. I got overwhelmed by texts, phone calls,and offers of food. My daughter gave me good advice one morning. “Mom, you don’t have to be so polite.” There was something sublimely simple about that counsel. I’ve spent my entire life being a pleaser. Good manners are a must. But Tracy was right. I did not have the emotional bandwidth to be gracious. I did not have to respond to every text or call. Accepting that fact gave me back some of the strength that kept threatening to evaporate.

What Is Emotional Dependency?

The whole health care experience made me ponder the term dependency. I do believe Lady Boomers prolonged our children’s adolescence by enabling their dependence upon us. But maybe it works both ways. My kids were rocks, allowing me to collapse like a deflated balloon. Their calls, presents, and presence alleviated stress. They even introduced me to Wordle, a game we play together online.

I also realized the inter-dependency between my husband and me. Our partnership has been one of the aspects of our relationship we value the most. I don’t think I quite realized how much Jim does to make our lives function. Suddenly, I was the one making sure the trash and recycling were taken to the curb on the right days. I was the one walking the dog twice a day. Our aging labradoodle decided her failing hips wouldn’t allow her to climb our stairs any longer. So, rather than my strong husband giving her a boost, that job fell to my back. All those little everyday tasks became mine.

The other inter-dependency issue I observed was my propensity to use collective words like, “our”, “us”, and “we”. “Our hospital room is on the third floor.” “We are going to the doctor on Tuesday.” “Thank you for caring about us.” My husband’s plight became mine too. I didn’t know where he ended, and I began. But is this necessarily the negative I anticipated? The daily showering and bandaging fostered intense intimacy. And maybe establishing intimacy is one of the great truths of life. When we love someone, we expose ourselves to vulnerability. And vulnerability is scary! The intimacy extended to the mutual joy we experienced upon receiving encouraging results from the pathology report.

Like most hospital visitors, I spent an inordinate amount of time waiting. Once again, however, creativity came to the rescue. A quilt I’d been working on since the onset of COVID provided much needed focus for my mind and hands. The repetitive motion of hand stitching the binding to the quilt backing was calming. I took the advice of my friend Margie Pabst Steinmetz, "when we use our hands to create, we discover solace and create peaceful moments for ourselves and our care partners.”

Watermelon Quilt

My husband and I went to a favorite restaurant to celebrate his good pathology report. There were open seats at the bar, so we ordered cocktails. My husband’s Manhattan was accompanied by a large ice cube designed to slowly release the flavors of the bourbon. It was fun. We ordered appetizers. We talked and flirted. He was my husband again, not my patient. Striving for a good quality of life should be a lifelong pursuit.

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