Who Suffers the Most?

I have been thinking much on the subject of loss, in regards to brain cancer patients and their primary caregivers. The question came up in a recent support group conversation about whether it is the patient, or their closest (primary) caregiver who suffers the most. Due to both the cognitive and physical impact of brain cancer, patients often have to give up favorite activities or subject matter expertise for which they were known professionally. Think of the accountant who can no longer manage their finances, or the ski instructor who can no longer ski, let alone instruct. Brian had to sell his motorcycle and no longer sails.

I chatted with Brian on the matter, and we each have our own takes, but the general consensus was “it depends.” For Brian, he found the best path to happiness (for him anyway) was to embrace his current situation and look back on his former life with fondness versus regret. He has many happy memories of riding his motorcycle and no regrets for selling it when he could no longer ride safely.  He has kind of a unique take on life, but he does not think of having to set aside various activities in a negative light. He prefers to appreciate the goodness that he has now. With that in mind, he commented that he thinks I am often more hung up on his losses than him. It is true that I am not nearly as Zen about this all as he appears to be. He could also be riding the wave of denial, but it seems to be serving him at the moment, so who am I to challenge it. 

Initially, I was fired up to expound that caregivers can experience even more loss than their patient, and I was ready to rattle off various scenarios in which I suffered more. (How noble of me, lol.) But the more I (over)thought about it, the more I feel like this horrible journey is not a suffering contest. There is no prize for the one who suffers the most. You can always find others who suffer more than you, but that does not diminish your own pain. Think about the famous person who seemingly has everything and then ultimately takes their own life (Kate Spade and Anthony Bourdain come to mind as examples). I have lost much in this journey of care-giving for a spouse with Glioblastoma, including leaving my career, but I feel extremely lucky that Brian has been stable as long as he has. At the same time, the specter of recurrence hovers ever in the background. I try to honor the positives and acknowledge the negatives and live somewhere between the two ends of the suffering/celebrating spectrum. Some days I am better at it than others.

It also feels disingenuous to even suggest anyone other than the brain cancer patient would suffer any more than the patient would. They are literally losing part of their mind – the thing that makes them them, and ultimately lose often their very life to this diagnosis. Is it even possible to suffer ‘more’ because you bear witness to their loss as well as experience your own? But yet I have to ask, why do we proclaim that the patient suffers more, or even try to compare suffering between patient and caregiver?  It seems to me that we all suffer in one form or another and there is not a need to designate the patient as the ultimate sufferer. 

But perhaps I am missing the point. I certainly believe that honoring the self-hood of the patient is paramount. As the primary caregiver, I cannot count the times I have had to protect my patient from well-meaning others, outside the inner circle, who either vastly under (or over) estimate their capabilities And the idea of losing one’s personhood is truly gut wrenching. To imagine it happening to ourselves is almost unfathomable and then to watch it happen to our loved one defies understanding. That said, do we truly ever know the suffering of another person and who are we to say our own suffering is ‘less than?’ 

Supposedly, Viktor Frankl said, “Never compare suffering. Everyone has their own Auschwitz.” 

Brené Brown said, “Empathy is not finite, and compassion is not a pizza with eight slices.”

Maybe the greater question in all this is why is self-compassion so hard? Why do we look for ways to extend it to others and believe there will be none left for ourselves?