On the first day of the school year in September 2005, my wife Karin was diagnosed with a life-threatening, aggressive form of breast cancer. We had three children age seven and under.
Karin, being a here-and-now, one-step-at-a-time kind of person, coped more calmly than me. Desperate to regain a feeling of control, I coped with my shock and distress by springing into hyper-focused, goal-directed action. I focused my efforts on trying to connect us to expert services. My take-charge manner was very necessary at that stage, but my high need for control could have become a problem beyond that point.
During our first appointment with the oncologist, he astutely recognized my personality type and assertively told me to step back and let him take over. He told me to not check test results on the online patient records system (I am a doctor in the same hospital). He cautioned me to not try to research and interpret medical information or make treatment decisions: he was in charge. At that moment, I felt like I had been standing outside my burning house with a garden hose after calling 911. Several fire trucks with lights flashing and sirens blaring had pulled up. I felt I had been politely but urgently pushed aside, told by the fire chief “You can step back now sir!” I was anxious relinquishing control, but at the same time immensely relieved.
From that time on, we just showed up for treatment and hoped for the best – we simply put our energies into engaging fully in daily life. We focused on the priority of taking care of our children, our relationship, spending time with extended family and friends, and doing meaningful work.
Many people urged us to be more ‘proactive’ about ensuring Karin’s health. We received a lot of unsolicited advice from many different quarters regarding treatments, alternative therapies, and healthy lifestyle measures which were said to be assured to beat the cancer and prevent recurrence. Most of the advice, while well-intended, involved measures lacking any reliable evidence.
Karin and I were painfully aware of the prognostic uncertainties of her cancer. We had a strong sense that there was nothing we could do to alter the not very reassuring statistics of the best available medical treatments. This realization was deeply unsettling, and the urge to deny it and believe otherwise was very strong.
When you’re diagnosed with cancer, it’s natural to wonder “What did I do to cause this?” and “What can I personally do to re-take control and improve the outcome?” But this need to identify causes and solutions in order to feel in control is a double-edged sword, fraught with potential for guilt and self-blame. The reality is that most of the factors causing cancer are either random or so biologically complex that for practical purposes, we can regard them as random, and beyond our control.
Most people don’t like the idea that . Studiesi show that when we feel insecure and lacking control, we are even more likely than usual to . Patients commonly over-estimate the role of their own actions or lifestyle in causing their cancer and in determining the future course of their illness. Too often, people become excessively obsessed with things like diet, when what they really need to do is focus on the things in their life that give them meaning, and matter most to them.
Furthermore, many people cope with adversity by believing that life events happen for a cosmically intended reason. This belief too is a double-edged sword: while it can comfort some people, others, whose adversity seems to have no redeeming features, feel anguished or alienated by the inevitable question ‘Why me?’ In my psychiatric practice I have counseled many such people, whose experiences with illness or catastrophic life events have left them struggling to come to terms with the randomness of life.
Twelve years later, Karin remains in remission (though she did have a recurrence five years ago, which fortunately turned out to be minor, after several frightening weeks of uncertainty). One is never really out of the woods with cancer.
Despite all the anxiety and uncertainty, or maybe because of it, Karin’s and my experience of her cancer heightened our sense that our lives are suffused with meaning. I don’t want to romanticize the experience with the selective memory of hindsight, but some of our most moving and meaningful interactions with people occurred in our time of crisis. We were the grateful beneficiaries of very much kindness and caring. We had a great sense of clarity of priority and purpose. Relationships mattered most to us. For quite a while we didn’t ‘sweat the small stuff.’ We have tried to keep these lessons in mind, even though human nature relapses much more surely than does cancer, and we find ourselves ‘sweating the small stuff’ all too often now.
To be clear, all this meaning was made by us and by our support system and by other caring people; everyone was doing their utmost to make the best of a really bad situation. I don’t believe that the meaning of such a life circumstance is predetermined – none of the good that came from it was ‘meant to be’. (How can anyone in good conscience judge their own circumstances as having ‘happened for a reason’ when thinking about their own positive outcome, knowing that others have unmitigated tragic outcomes?) Nor am I endorsing the ‘cult of positivity’ surrounding cancer – I would never suggest that ‘cancer was a blessing’. It could have turned out very badly. We fully recognize that our positive outcome was heavily determined by dumb luck.
Coming to terms with randomness is frightening, but it does liberate us from the tendency to blame ourselves for illnesses we didn’t cause. It also ought to stop us from judging others for their misfortune. And an understanding of randomness should make us think twice about pressuring people with unhelpful advice of unproven therapies that are based on .
People with different personalities differ in how intensely they need and expect to be in control of their livesii, and in their level of anxiety when experiencing a lack of control. As a naturally high-control person myself, relinquishing it when circumstances required doing so did not come easily to me. My work now often involves trying to help patients with high-control personalities like mine who are experiencing random adversity to recognize the limits of their control. People like us need help letting go, tolerating uncertainty, and focusing on living life to the full, as meaningfully as possible. Here and now. Each day is precious and uncertain. In this way, cancer is just like life in general, only more so.
i. Whitson, J. A., and A. D. Galinsky. “Lacking Control Increases Illusory Pattern Perception.” Science 322, no. 5898 (Oct 03 2008): 115-7.