“A Little Better Every Day”: The Power of Story

It was one more waiting room. One more procedure. This one, to examine a curious-looking growth on her pancreas, Marlene swore would be the last. “It’s nothing,” she said. “We’re done with this.”

She felt certain. Me? Not so much.

My hesitancy wasn’t based merely on the doctor’s reluctance to define the situation. Before and after the procedure, he reiterated the need to await lab results. “Up to five business days” had just been added to the five months of tests, imaging, surgery and hospitalizations we had experienced since Marlene was diagnosed with endometrial cancer.

“That’s just doctoring 101: CYA,” Marlene said after he left. “They never want to tell you anything until they have evidence.” She raised her fingers in air quotes on that last word. “But I’m telling you: This is nothing. Anyone who gets to our age is going to have spots on the outside and spots on the inside. The cancer has been treated. We can let this go now and get on with our lives.”

Her faith, her optimism, never fails to amaze and encourage me. Hopeful, forward-looking, adventurous, determined, kind: These are just a few of the traits that drew me into a loving relationship with this dear woman I call my partner in life and dance. But her clear convictions, the deep sense of certainty she has about life at times, can be a bit muddling — because I don’t share it.

I don’t believe in: Certain outcomes. Done deals. Guarantees.

In the recovery room after the procedure, and under the influence of its happy sedatives, she shared her own version of events with Michael, her best friend of more than 50 years: “The doctor says it’s nothing to be concerned about. I’m fine. I’m done with this hospital.”

I winced. A lingering superstition reared up, and an inner voice quietly rebuked her: “Don’t jinx it!” Outwardly, I offered Michael a more pragmatic reply: “The doctor says we won’t know until the lab results are back next week.”

Though Marlene had a front-row seat to her mother’s death from glioblastoma, a nasty form of brain cancer, she would say I’m the more savvy of us two when it comes to healthcare and that my experience with cancer and a host of protracted or terminal health conditions is unfortunately broad. Even so, she waved away my cautionary statement like it was a fly hovering over sliced watermelon at a picnic, telling Michael, “I know what I know. She’s just not ready to accept it yet.”

GRATE-70Indeed, I must admit to a battle-hardened approach to major healthcare issues. With five close relatives and more than a few friends dead of it, I’ve already had my fill of cancer. And having watched my youngest brother linger for four years in a coma only to be followed in short order by the death of a dear friend from congestive heart failure misdiagnosed as asthma, I know too well how oversights in medical testing and diagnosis can result in nothing short of tragedy. Anymore, I never speak of the future with certainty.

Instead, I have learned wait, watch and be loving. Holding “outcome” as an ever-evolving trip into the Unknown, I stay focused on the present moment, the current conditions, and offer meaningful support where I can. In my heart, there is always the wished-for future, and I envision my loved ones in their optimal wellness, making the best of whatever life brings. But I don’t usually weave fantastical stories of happy endings. The facts of humanity’s lived experience are undeniable: Every single one of us will die. Some of us will go miserably.

And as a student of this grim reality, I have learned another crucial lesson: Leave the coping stories of others alone — unless they become a source of harm unto their own. (And even then, remember that the perception of a story as “harmful” is highly subjective.)

When called in my psychotherapy practice to work with someone facing a health crisis, I often reflect on the influence narrative has played in the numerous health dramas I’ve witnessed first-hand, as well as the powerful experiences related to me by clients. I have learned to respect, with true reverence, the way in which stories help us cope with extreme, even “unbearable,” circumstances.

Perspective, expectations and faith each play an important role in a crisis, not just for people who are injured or ill, but for loved ones and caregivers, as well. Without these, death anxieties and depression can be overwhelming. Sometimes, a useful, hope-filled story, no matter how improbable it may seem, is the only thing that keeps a person going. Sometimes, the least helpful thing we can do is force someone else to “look at the truth of the matter.”

But because one’s perspective tends to affect treatment decisions — whether to have treatment at all and if so, how far to take it — conflicting stories often create an emotionally charged environment among loved ones and caregivers and can make it difficult to find clarity or reach agreement peacefully.

In such cases, I often think of my father, himself now dead of cancer, and the stories he told me when my brother Jason was in the coma. A car wreck outside of Houston had set a tragedy of errors in motion. Tests not done, which should have been, and poor medical judgment in the weeks immediately following the crash resulted in my brother suffering, and surviving, a massive brain injury. It left my entire family reeling with anger, confusion, fear and sorrow as we waited to see if Jason would recover.

After a month in the ICU, Jason was transferred to a specialty care facility at Baylor Medical Center in Dallas, where Dad assumed the role of primary caregiver. In emails and phone conversations, he told me stories of Jason’s incremental-but-steady improvement. “He gets a little better every day,” he would insist.

Though I had seen Jason in the ICU and understood the dire nature of his situation, I was living out West and had no other reliable source of information about Jason’s condition. I took Dad at his word, and five months later, when I returned to Texas for a visit, the effect was one of a sucker punch. Not only had Jason not been improving “a little every day,” he was considerably worse. Contracture and muscle atrophy had set in, and Jason was gradually returning to the fetal position from which he originated.

Surprise, sadness and distress at seeing my brother’s condition met hurt-filled anger at my father’s deception — as I saw it — and the result was emotionally cataclysmic. I had to fight off the urge to vomit, and then call upon every bit my acting talent to emit the tender energy that a loved one in the hospital deserves to receive. Outside the hospital room, I confronted Dad. “How could you tell me he’s getting a little better every day?” I demanded.

To my surprise, Dad smiled and shook his head at me. “But he IS getting better! Just look a little closer. Look past your expectations.” He walked back into Jason’s room and began setting up for the evening’s hygiene routine.

Brushing his teeth with a mouthwash-soaked swab, Dad stroked my brother’s cheek with greater tenderness than I’d ever seen him treat another human being. “Wake up, Jay!” he called. My brother’s face twisted and stretched with a yawn; his sticky white tongue lamely soaked up the mouthwash. Dad followed up with a water swab, and Jason’s mouth widened, his parched lips spreading to receive it. “There! Did you see that?!” Dad called out to me. “He just smiled!”

I wanted nothing more than to believe my brother was healing and had the willful intention to smile still in him somewhere, but wouldn’t call what I witnessed there a smile and said so. “Don’t you think maybe it’s just a natural reflex, that the sensation of water might provoke his mouth to open?” I replied. “Even cells on a slide under a microscope plump up with water.”

Dad laughed, bearing an incredulous expression. “Cells under a microscope?! It was a SMILE! Watch. He really loves this.” He turned on a rotating electric razor and ran it along Jason’s throat and face. After a minute, Jason yawned again. “See what I mean?” Dad said, excitedly.

“That was a yawn,” I replied.

“Exactly! He finds this relaxing!”

“People in comas need to relax?” I asked.

“Of course they do!” There was not a hint of humor in his tone. “Comas are a lot of hard work.”

A few weeks later, having been declared unresponsive to treatment, Jason was transferred to a nursing home in Plano, near where my dad and stepmother, Beth, lived. For most of the next three years, Dad would be full of stories about his recovery. He continued to report, “He gets a little better every day.”

Beth would affirm my father’s reports when he put her on the spot. And she cared for my brother in the devoted fashion of a mother, making daily trips to check on him in the nursing home after work. Later, she would admit she often ended those evenings sitting in her car, feeling the heavy weight of sadness. “I would ask God, ‘When are you going to come get this poor boy and put an end to all this suffering?'” she said. “It seemed impossibly cruel to let a human continue living in that condition.”

Despite Dad’s recovery story, I would not be sucker-punched on subsequent visits. I was prepared, instead, for a conflict between realities: how Jason appeared to Dad versus how Jason appeared to most others. Where Dad saw interaction, others saw instinctive reactions. Where Dad saw improvement, others saw decay. As I saw it, Jason was minimally conscious, if not persistently vegetative, and had no control over his body; he was vanishing like a glacier, his body curling up as relentlessly as retreating ice — and seemingly just as slow.

The differences in realities were dramatic, and Dad would sometimes report on them himself: “The doctors say Jay doesn’t know the difference between the sound of a human voice and the sound of a vacuum,” he told me angrily one day. “They are completely full of shit. Beth and I are the ones who see him every day, not those doctors. They aren’t paying close enough attention. But we are. We see the changes.”

It took a year or two, but somewhere along the way, I finally understood the logic behind what I had come to call “my father’s delusions.” Faced with a situation that was otherwise hopeless and interminable — for the only option remaining to us, unpalatable, never proposed and soon to be represented by the horrendous legal circus of the Terri Schiavo case in Florida, was to remove Jason’s feeding tube and starve him to death — my father needed a separate reality into which he could ground himself. He needed to see improvement, even if there was none, to find the heart and energy necessary to provide three years, nine months worth of daily caregiving for his much-loved youngest child.

I was not there doing that work. I was living in the Portland and making occasional visits to Texas. My heart broke in leaps and bounds, while Dad’s was carved and etched day after day, until only the scattered moraine of hope was left behind. Unless I was going to advocate for removal of the feeding tube, it was not my business to disillusion Dad of the beliefs that kept him going. When my brother’s long journey finally ended, it was Dad who called and through tears, wistfully told me, “Jason decided to leave us today.”

I would later hear echoes of his persistence and the power of his alternative realities in the way my father handled his own decade-long battle with prostate cancer. Knowing it had killed nearly every male in his immediate family tree, he approached the cancer as a condition to be managed, but not at the expense of his quality of life. Even in his last days, Dad never admitted the severity of the cancer’s spread, and as toxins from his malfunctioning liver bloated his legs to more than twice their size and forced him into the hospital near death, he was swearing he’d take care of things, such as his will, “as soon as this swelling goes down.” Not surprisingly, he died intestate.

For all the possible dysfunction in this story, it taught me to be sensitive to the narrative needs of people who are sick and those who care for them. Years after Jason died, when a beloved aunt, Liz, was battling lymphatic cancer and had fallen into a coma due to complications from chemotherapy, I heard the familiar conflicts arising. “Everyone is telling us we just need to let her go,” my cousin angrily bemoaned to me one night. “But we know she’s not done yet; she’s going to come out of this and live for a while more.”

My cousins turned out to be right. And Liz, in her own healing narrative, credited Hurricane Katrina for saving her life. A native and nearly lifelong resident New Orleans, she was living on Hawaii, and just emerging from the coma, when the hurricane hit. “Katrina saved my life because she made me so worried for my city, all my family and friends there,” Liz told me a year later. “If I hadn’t been distracted by that, I might have realized how sick I was just then, and I think I would have given up and died.”

Instead, she recovered, refused further chemo and got another 18 months of life, most of it good. During that time, Liz confided to me an awareness she would not prevail, saying, “What can I tell you but that I’m dying.” It was not a conversation she felt she could have with many other family members, knowing the depth of their attachment created stories in which she was to survive, but she acknowledged my ability to look death in the face and invited me into a dialogue about it. Her openness allowed me to videotape many hours of life story interviews with her, which after her death became an enduring gift to the family.

One never wishes to gain experience on a road paved with suffering, sorrow and grief — it’s far more fun simply to travel abroad — but these family members, with all their frailty, passions and unusual perspectives, taught me lessons about illness, dying and loss that have served me well over the years.

Above all, don’t deny people the stories they need cope with an acute and immediate crisis.

Which is why I never for a moment challenged my dear Marlene’s belief that she would prevail in her cancer treatment, nor denied her expressed expectations that the growths on her pancreas were “nothing.”

Experience compels me to keep a watchful distance from such beliefs myself, for they do not suit me personally. I do not want to sucker-punch myself, as the case might be, by packing the future with expectations.

I nevertheless cried, with happiness and relief, when one morning shortly after the procedure to examine her pancreas, Marlene walked into the bedroom with a note in her hand. Smiling, she handed it to me, and I read the words, “Benign. No malignant potential.”

She embraced my heaving chest and shoulders, stroked my tear-flooded cheeks and said, “See, I told you, and now here’s your evidence: It’s nothing.”

Tamara Webb, LPC, LMHC, is a writer and psychotherapist in Portland, Oregon. Contact her at tamara@fivebodiescounseling.com.