I was a shy and fearful child. By middle adulthood, though, I’d worked so hard to compensate for these qualities that few people realized I was an introvert, and even fewer knew of a deeper issue that travelled alongside like Pigpen’s dust cloud in Charles Schulz’ Peanuts cartoons. This fear cautioned me against having the voice of a peer with those whom I thought my betters, or who thought themselves so. This fear was undaunted by my longing to have it gone.
My otherwise strong sense of self shriveled in the face an imagined response from store manager, editor, doctor. I worried about offending, boring, disgusting someone. I worried that the person wouldn’t like me.
I’d shunt the potential service professional confrontations – the A/C guy, the piano tuner, the car mechanic – off on my husband, who wondered at my fear. “I’m sure you could really handle it yourself,” he’d say.
“Why should I have to?” I’d respond. “Do I have to be completely competent? Can’t I have one vulnerability that you take care of for me?” It was a convincing argument. Wasn’t I entitled to stop worrying about this one thing that occasionally held me back from parties or networking events that might benefit my life or career?
Yes, I was entitled. But secretly, I knew I was kidding myself. Worse than missing a party or networking event, the fear kept me overly safe. At the edge, perhaps, but afraid to leap.
There were times I did leap, in life and in my writing, screwing up my courage, struggling through a Shelob-sized spider web to deal with a situation or go deeper with my writing. The results impressed me: a realization about how well I could handle something, a profoundly important writing experience. But I’d feel depleted by the effort, could only handle it in small doses. I told myself I was fine with that.
And then on November 15, 2013, my husband’s routine heart surgery went off-the-charts wrong. A hemorrhage after closing, a reopened chest and heart massage, and thirteen hours of anesthesia. He showed up in the Critical Care ICU a different man, wildly agitated and unable to recognize or respond to any of us. The doctors greeted my husband’s mental status with discomfort, dismay, professed ignorance, and there was even laughter from one bizarre nurse.
The next morning I met The Whisperers. That’s what I named the group of six, seven, ten doctors who seemed to move as one across the floor, blowing a dark shadow of worry into the space just outside my husband’s room. I walked to the doorway, waited for them to finish and asked my questions as they examined my husband.
What is this? “We don’t know. Maybe the anesthesia.”
The third morning they slid the glass door closed, and I was up and out in half a minute, planting myself in the raggedy-edged circle of their backs facing me. They didn’t want me there. Their body language left no room. Their facial and eye movements refused to take me in. But I insisted they attend to my questions and comments.
The anesthesia is out of his body. Do you know what the problem is?
Is there someone else who might know?
I’m concerned about his creatinine – it’s creeping up. No, we are not going to wait until it’s up to 3.2 so that he needs dialysis; what are you going to do now?
“Are you in the medical field?” the Director of the ICU questioned in a soft but aggressive voice.
I said I was a sixty-four year old woman, about to be sixty-five, smart and knowledgeable, a clinical social worker in and out of hospitals for over forty years. And I am my husband’s wife, and his power of attorney for health care.
I belonged exactly where I was. I felt steely, energized, and brave.
I’d packed a suitcase to accompany my husband during his planned two week stay, an informed consumer with a loving sister who’d taught me the kinds of attentiveness necessary when a loved one is in the hospital. I assumed there might be an occasional issue that would come up, and I was prepared for that.
I was not prepared for the constant nightmare. Most of the nursing was pretty good, but “pretty good” nursing resulted in serious elbow, buttocks and scrotum wounds that took months to heal; the pinpoint vision of the doctors saw only the problem right in front of them at the moment they saw it – no history or future consequences ever considered.
Multiple times a day issues demanded my attention and action, with the delirium at the forefront. I asked repetitive questions. What is this? “We don’t know.” Is there any research? “No.” Does anyone here know how to deal with it? “No.” And finally a confrontation with the Director of the ICU: With all due respect, is there anyone – anyone – who knows more about this than you do?”
“No.” His lip curled up. “There is no one who knows more about this than I do.”
On the tenth day, the Wednesday before Thanksgiving, my husband’s surgeon stepped in for his daily minute and said, “It’s time to think about sending your husband to a long term care facility.”
“Over my dead body,” I replied. I was frantic. I called a doctor friend who worked at this hospital. She paged the surgeon and suggested strongly that he consult with the critical care neurologists, who dealt with ICU Delirium.
On Thanksgiving Day, one of the attending neurologists examined my husband, told me he was indeed experiencing ICU Delirium, and said: “We are familiar with this; it’s quite common. There is research; and we do know what to try.” He changed my husband’s medications and his daily routine. Within days, Bob’s cognitive function began to improve. Very slowly, he came back to us, to himself.
This did not stop the need to continue to assert myself as advocate, communicator, researcher and protector with doctors who fought or resisted the changes in treatment every step of the way. Except for a handful of nurses, doctors and a physical therapist, most doctors did not see that in the absence of a patient available to discuss his own treatment and care, they had a responsibility to discuss it with me. They didn’t like that we wanted the Critical Care neurologists to be in charge. They didn’t like anyone else telling them what drugs they should and shouldn’t use. They didn’t like my persistent questions, my insistence on looking at the several-times-daily lab results, my requests that nurses reposition him every two hours as they were supposed to, to avoid further skin tears. They didn’t like me reporting almost daily events of poor infection control. And I guessed they didn’t like me.
My husband’s chest wound opened and became infected, so new surgeries were scheduled, with new questions that needed answers. Why was the wound left uncovered? Why did the nurses not adhere to our concerns about sternal precautions? Why are you not wearing gloves when you touch his chest?
It seemed that every time I left the room, to get a drink of water, to pee, I’d return to a surprise. I finally said, “I don’t think you understand what I keep asking for.” I paused and in an instant found a new technique. “Would you discuss these things with my husband if he could understand?”
“Of course,” they said.
“Then call me Bob,” I replied. “Because right now, I am his mind, his voice, his ability to question and express concerns. If you would talk to him, you have to talk to me.”
If this didn’t change them, it changed their hope that I would get tired and go away. And that had to be enough.
Only when my husband was safe and almost ready for rehab after seven and one-half weeks in the critical care ICU did I have time to realize I’d done all this without fear, self-doubt, or inner conflict. No dust cloud. No screwing up my courage and fighting my way through the giant spider web.
I was astonished. Thrilled. How and why had this happened? Had the times I fought to be braver been practice for moving beyond the fear when I really had to? Had this life-and-death situation uncovered or redesigned a strength I’d had all along? Or was it just the adrenaline that took me through this near-two month nightmare?
Whatever it was, I loved that it had happened. And if I ever want to slink backwards, I’ll remember these weeks.
In the final days of the hospitalization a new group of physicians stopped outside my husband’s room. I stepped into the group. I still had questions.
“Are you joining us?” the attending asked. Was he amused? Or annoyed?
I didn’t care. “Yes,” I said, in a clarion voice. “Of course I am.”