The Nature of Hope
I love being fooled by a twist ending to a movie. I remember rolling off the couch in disbelief when it was revealed at the end of the Sixth Sense that – spoiler alert – Bruce Willis had been dead the whole time. And I could watch the last scene of Usual Suspects on a continuous loop, endlessly fascinated by the slow unfolding realization that the Kevin Spacey character is Keyser Soze.
According to cognitive scientist Vera Tobin, two phenomena help explain our vulnerability to being fooled. One is confirmation bias. This is the tendency to seek information that confirms what we already believe. If we believe someone is guilty of something, we will view every action that person takes through a lens of suspicion. More than likely, we will find the evidence we need to support our suspicion. To put it another way, confirmation bias means that you have to believe it to see it.
. This is the tendency to lean too heavily on the first piece of information we hear, failing to correct it even as we encounter new information. Research in psychology has shown that when confronted with information that runs counter to our held beliefs, our response is to become more hardened in our existing position. Once an expectation has been set in our minds, it takes more than objective facts to dislodge it.
These days, I find myself going over in my mind certain scenes from our last six months with Aaron. Like watching a movie for the second or third time, I now see those scenes very differently from how I experienced them in real time. Looking at pictures taken of Aaron during our last few days in Arizona, for example, it is obvious that he was in worse physical condition then than he was when we arrived six weeks earlier. Not only had he become frailer, I seemed to not notice that the tumor on the side of his head continued to get larger, despite the treatment he was undergoing.
On the surface, it is obvious now that my desire for Aaron to get better led to confirmation bias. Throughout those six months, I continued to seek out “evidence” that a cure was possible. I remember sitting in Arizona reading an article about the early promise of immunotherapy as a treatment for some cancers. Never mind the qualifications that it was working for some people, with certain cancers, at specific stages of the disease. All I needed was something to confirm my expectation of a cure for Aaron.
Anyone who has had the misfortune of a journey similar to ours will understand the strength of anchoring. The early news about Aaron’s condition was all positive. The tumor came out cleanly; there was no indication of cancerous cells in Aaron’s lymph nodes; and several treatment options were available. I remember the oncologist telling us that if plan A doesn’t work, we will move on to plans B, C and D. The anchor was set. From that point, as the news grew increasingly grim, I kept going back to, “but you said…”
Why is it that the clues to Aaron’s worsening condition that are so obvious in hindsight were missed in real time? Was I in denial? Was I delusional? Or was I simply too afraid to see things as they were? I believe now that what I was experiencing during those months was a mix of anxiety and fear, peppered with a bit of denial. Remarkably, I discovered myself relying on the countervailing force of hope as my means of coping.
For me, hope was that sweet spot of comfort somewhere between denial and despair. Despair is simply the absence of hope. Trust me: despair will kick hope’s ass every time if you let it into your head. Had I given in to the despair, life would have felt like an emotional freefall with no sense of where the bottom was. Mindfulness meditation and lots of self-talk were the only defenses I had against the slow and steady encroachment of despair.
And then there is denial. To the extent that despair can take you to dark places void of hope, denial can give you a false sense of hope. Maybe avoidance is a better word than denial. It is the difference between pretending something isn’t there (denial) and staying away from something you know is there (avoidance). The paradox is that hope sometimes requires a hearty dose of avoidance to sustain it. The problem is that false hope, borne of this avoidance, is inherently unstable. You simply can’t go on avoiding the truth when evidence is mounting right before your eyes, despite your confirmation bias.
What stands out to me most in hindsight is how we were able to sustain a sense of hope over those six months. The alternative treatments created the big HOPE, that “you never know” feeling that left the small crack in the door. But hope in real time was experienced in smaller bits. In order to sustain the feeling of hope, we had to make our world smaller. We hoped for a good night of sleep for Aaron; we hoped that he would have a good day with his friends; we hoped that his back pain would subside for at least a little while; until in his final weeks we hoped that he would have the energy to get through the day.
What amazes me now is the depth of honesty and sincerity around the hope for these little things. The reason is because it was all we had. Perhaps the greatest testament to the durability of hope came from Aaron the day before he died. He was tethered to an oxygen tank full-time. He had stopped eating. Atrophy had taken the muscle off of his bones. He was on a constant drip of fentanyl at a high dosage. His mobility was restricted to being picked up and moved between the hospital bed that we placed in the family room to the electronic recliner that we bought for him.
That morning, Aaron had a particularly difficult time getting comfortable in the bed. I went to the medical supply store and purchased a wedge-shaped pillow to put under his legs, thinking it would relieve some of the discomfort. I returned with the pillow, hopeful (that word again) that it would work. To everyone’s delight, the pillow did the trick. With Aaron’s fate outside of our control, we did the one thing we could do. In that moment, we all felt good.
It was at that moment that Aaron informed me that while I was gone to the medical supply store, he and his mom talked about having a physical therapist come in and help him regain some strength. Imagine that. Twenty-four hours from death and Aaron was focused on what he could do next. Did Aaron really believe that he could get stronger? That is beside the point. Aaron never abandoned hope that there was a next step he could take to squeeze out as much life as possible, regardless of the eventual outcome.
We were told in October of 2016 that Aaron’s cancer had progressed and that the only remaining treatment had a 10% chance of working. The only way to respond was to live every moment fully by focusing only on those things that mattered in that moment. We did what we could do, we thought what we needed to think, and we felt what we needed to feel to make that moment the most important one in our lives. For us, hope meant living fully in the 10% we were given.