“You don’t have to be good,” Mary Oliver absolves us at the beginning of her beloved poem, Wild Geese.
You don’t have to be good.
I have been craving that absolution since my diagnosis. Cancer is (like pregnancy) a condition that awakens an irresistible urge in others to give well-meaning, unasked-for advice. To be a good cancer patient is to exercise and eat vegetables and, of course, stay positive.
In 2009, a professor at the University of Waterloo gave positive affirmations to people who felt bad about themselves (I’m a lovable person!). The impact, however, was not particularly positive. Instead, these study subjects felt worse about themselves after repeating the statements or considering how they might be true.
That the admonitions to “Be positive!” and “Stay strong!” are well-meaning does not absolve them of their harmfulness. They’re not only useless (as all emotional directives are – “don’t cry” and “don’t be mad” being my favorite examples). These directions also have the tendency to foster a nagging sense of guilt. Am I going to make myself sick if I don’t keep a positive attitude? Am I doing cancer “wrong”? Am I killing myself by feeling, today, as if this whole cancer shebang is more than I want to bear?
You don’t have to be good.
The emotional impacts of cancer have not been linear or predictable. I have felt sublime joy in just being alive, cried with happiness seeing the delicate pattern of spots appear on the pavement as it rained. I have fewer down days than I did before my diagnosis: I am no longer as prey to that miasma of angst that comes from no discernible source. I know what is wrong. I know what my fight is.
But there are also times when I am expecting happiness but find some other, darker emotion in its place.
At 6pm last Monday night, my oncologist called with my latest scan results. “I’ve looked at them myself,” he began in a voice that betrayed nothing, “but I was waiting for the radiologist’s report. They are, in a nutshell, good.”
I learnt a new word: sequela. The aftereffect of a disease. The shadows in my liver were “sequela” – not tumors anymore. The spots under my skin were “residua”. There was even a chance that the spots in my lungs were just scarring.
The results were so good that my doctor put on the table an option we’d never considered before: stopping chemo for two months and waiting to see what happened at the next scan. From the two hard paths, a third had emerged. It seemed almost miraculously easy compared to the others: a period of respite with no treatment failure to worry about and no chemo to endure.
It was wonderful news to give to my parents and family. I felt lighter, physically. I had shuffled back a few steps from the morbid edge of my own mortality. I could let my eyes lift from dirt and ashes and squint toward the horizon.
But I can no longer see the future like I could before this disease. The good news let me think about re-entering the world, gave me freedom to consider what I wanted to do with my days. Yet, beyond the next two months, the horizon remained obscured.
Only 15% of Stage IV patients have a long term response to chemo. The most likely outcome is that the tumors start growing again in the next few months to a year. To look toward the horizon doesn’t give me a sense of spaciousness, of time, anymore.
When I tell people about the results, they want to know how I feel. They want me to feel happy, for this news to feel (to be) unambiguously good. Some even want to give me credit for these results, for staying strong and positive and for doing all the “right” things during treatment. It is credit that I do not feel is deserved, that can only be given because they didn’t witness the days when the burdens of the present and the bleakness of the future were altogether too much.
You don’t have to be good.
You don’t have to feel good.
(And we should probably stop telling people to stay positive).