Six tips for navigating challenging circumstances I learned from my wife’s terminal Illness
My wife Marcia spent her entire professional life, more than 41 years, as a crisis manager advising high-profile clients and organizations. On September 3, 2019, she found herself in one crisis even she had trouble navigating. A CT scan revealed that she had stage 4 pancreatic cancer, considered one of the most lethal cancers. It has the lowest survival rate and one of the shortest life expectancies of all cancers: a median of three to six months after diagnosis, by some accounts.
On February 10, 2020, 160 days after her diagnosis and a month after her sixty-eighth birthday, Marcia passed away in her sleep, at peace with herself, her family, and the world around her.
Our 5-month bout with a medical tsunami, and our coming to terms with life’s end, was different from what you might expect. We were both hit hard of course. The first few days after diagnosis, when confronted with the possibility of impending death, were other-worldly. But my wife was exceedingly clear: she did not want to see her life as a tragedy. She saw her life as bigger than the tumors taking over her body. Although she undertook heavy-duty chemos and understood their low probability of working, she decided she had already led a successful and fulfilling life … even though she wished it wouldn’t be cut short. It took some time, but with a clear-eyed, expansive approach she adjusted to the new realities. She had already won and would not be graded by the impact of a disease that medicine could not control.
By hoping for the best but preparing for all eventualities, we were able to discuss everything; leave no stone unturned; and develop medical, legal and life plans that made the most of each moment and transcended the disease. We dedicated time each afternoon for free-floating conversation about the meaning of life and death, taking some of the scary edges off of the unknown and freeing us up the rest of the day to watch movies, read, take waterside walks or engage in other pursuits. We undertook projects to help others that added intense meaning to Marcia’s remaining time and left legacies that will endure long after her passing, We found miracles in the mundane and discovered the closer you get to the end, the more intense life can become.
In contrast to our approach, large numbers of patients and their families are not properly prepared for death and are caught off guard with little time to make tangible and intangible arrangements for, and come to terms with, the end. Many patients and doctors avoid speaking about the prospect of dying. It is well documented that the medical profession generally is focused on curing disease and solving problems but is less adept at treating the patient as distinct from his or her medical condition. At the most critical moment—when patients may not know their prospects and the pros and cons of various treatments or may be in denial when they desperately need clarity—some doctors shirk what may be the most important conversation of a patient’s life. And some patients don’t want to face the inevitability that life ends at some point, opting instead for tracks of treatments that can do more harm than good, certainly to the quality of one’s last chapter.
Failing to address the prospects of dying can lead to unnecessary, costly, and unwanted procedures and engender emotional turmoil and confusion for everyone involved. Avoidance denies the patient the empowering right to live his or her remaining time as he or she chooses.
All cancer is terrible; all terminal illness is. And no one is immune. But while we may not be able to control how, if, or when we get it; how it behaves; or how effective treatment will be, we do have a choice. We can ignore reality, put on blinders, and succumb to the typical, seductive drumbeat to cheer up patients and avoid speaking about the possibility of death. Or we can accept reality and acclimate ourselves to address the cancer as best we can. Rather than ignore the elephant in the room, it is far more rewarding to manage life threatening circumstances with eyes wide open so that we could experience our final days, weeks and years with purpose.
This clear-headed, unencumbered approach can be applied to any medical condition and even other circumstances. It simply means thoughtfully assessing a situation—medical or otherwise—understanding the realities involved, making adjustments, taking constructive action within the confines of what is feasible, and preparing for all reasonable outcomes. It may mean accepting hard realities and making the best of a situation. It may mean making the best of your life, one shortened by illness.
If you are facing a monumental challenge or life threatening illness, here are six ways to help navigate your way through:
See your life as bigger than any condition. Whatever your problem, be it medical or other setback, seek to shock-absorb it by recognizing that your life is bigger than the problem. It may take awhile to come to adjust to the full dimension of a jarring event, so be patient.
Avoid narrow societal thinking. Before undertaking a medical or other course of action, consider its risks and benefits, the probabilities of success, the likelihood and impact of side effects, alternative approaches, and the overall effect on your quality of life. Act thoughtfully, not mechanically. Don’t succumb to “conventional norms” that may involve distortion and not apply to your circumstances.
Set your life plan, making every moment count. Your life plan encompasses your medical plan but is far broader. If you’re beset by a serious condition, reserve time for breaks and engage in activities that reflect your values and elements of adventure and wonder, however small in scale. Take scenic walks and car rides; have a drink or meal in a place you’ve never been to, especially places that bring you closer to nature and life’s core elements; engage in projects such as those that help other people, thereby rising above your condition and leaving a lasting mark.
Speak about everything, leave nothing on the table. Dedicate defined time and space to speak about the possibility of dying or other difficult subjects, thereby freeing yourself to engage in life-affirming pursuits during other times. By airing uncomfortable subjects to a loved one or trusted confidant you can put borders around them and allow others to help contain the scary loose ends.
Be an activist, keep moving. Albert Einstein once said: “Life is like riding a bicycle. To keep your balance, you must keep moving.” Take one step at a time, but keep going forward. Even completing small tasks adds a sense of accomplishment and fulfillment.
Confronting impending death or other calamity is extraordinarily challenging. We might not be able to change reality, but we can decide how to deal with it and find opportunities to cherish the time we have.
Richard S. Cohen is the author of forthcoming book The Smooth River: Finding Inspiration and Exquisite Beauty during Terminal Illness. Lessons from the Front Line. For more information visit www.smoothriver.org.