As mentioned in my first post (The World Still Out There), this blog grew out of succinct administrative updates I sent out to a cyber-community (under the umbrella of Lotsa Helping Hands) of family and friends eager to do whatever they could to help us after my husband’s diagnosis. The posts gradually grew more descriptive (if not outlandishly long-winded), and I found writing them vastly therapeutic.
“The Waiting Room” was one of the first posts that followed my husband’s death:
I have used the phrase “I’ve got good news and bad news” for comedic purposes, but I never used the words “I’ve got bad news” until the Monday Jim was diagnosed, when I quivered into a friend’s voice mail: “It’s Auntie Steph. I’m with Jim at the Lahey Clinic and we have really bad news.”
I couldn’t break the news to my family, but for calling my younger brother the next day and saying his name in a way that made him ask if he should pull over the car.
When I asked if he was driving, his drawn-out, somehow multi-syllabic “yes” made it clear the question had been delivered as if I had asked, “Are you sitting down?”
Jim never used the phrase “I’ve got bad news” with me or our children.
Perhaps the closest he came was the night of his diagnosis, when we both independently tried to make arrangements with our sons’ friends to get our sons home–without panicking them–as soon as possible.
Of course, there is probably no better way to ensure panic will ensue than to alert someone to the possibility of panic. (My elder daughter later apprised me I also need to eliminate from my repertoire the opening line, “I don’t want to freak you out, but . . .”)
Only after his death did I realize what it was about Jim that kept him from ever having told us “I have bad news” about himself.
I began to understand this a few weeks afterwards, when I became increasingly irritated at the way someone else’s patient was prattling in another doctor’s waiting room.
The woman was morbidly obese and in her sixties. When she checked into the orthopedist’s office she launched a loud, HIPAA-to-the-winds conversation which she made impossible not to overhear.
After checking in with the receptionist and being told she could have a seat, she continued gratuitously to discuss her past cancer treatments. No one had asked her about this: all the receptionist needed was her name. But she announced she was doing quite well, although she mentioned being uninterested in hewing to portions of her internist’s advice. (Her internist, whose name she broadcast to the room, happened to be ours.)
Jim probably had had countless patients like this one. In fact, our internist may well have inherited this very patient from Jim’s primary care roster.
I sat in a seat only a few feet away, waiting for one of my daughters.
The woman made her way to a seat in the waiting room. After a few minutes, a nurse opened the door to the examining rooms and called the woman’s first name. She looked up.
The nurse introduced herself by name, then directed to the woman the rote pleasantry, “How are you?”
“I’m a survivor,” the woman announced theatrically, in place of a “Fine, how are you?” She made the declaration as if the fact of surviving cancer evidenced some personal virtue on her part.
It seemed somehow inappropriately self-congratulatory to me, admittedly still awash in the unfairness of my husband’s affliction. “Survivors,” Mihaly Csikszentmihalyi wrote in Flow, occupy a select and worthy position: “The ability to take misfortune and make something good come of it is a very rare gift. Those who possess it are called ‘survivors,’ and are said to have ‘resilience,’ or ‘courage.’ Whatever we call them, it is generally understood that they are exceptional people who have overcome great hardships, and have surmounted obstacles that would daunt most men and women.” Implicitly, I think, “survivors” in this sense do not anoint themselves as such.
Although he did not survive his cancer, Jim was such a man.
Jim, however, would not have given this interlude a second thought. Analyzing my own irritation and resentment in that waiting room gave me yet another window into Jim, and another way in which to aspire to grow up to be like him.
I realized Jim never would have made the fundamental assumptions that the woman in the waiting room seemed to be making (or at least that I, through the prism of my own grief, was hearing): that no one else in the room was likely to have experienced problems as substantial as hers, and that survival somehow is earned.
To the contrary, just as Jim had told me (when in pain so profound it required his first emergency hospitalization and I asked him to assign it a number so I would know what to call ahead to notify the oncologist to streamline the admission) that other’s pain “could always be worse”; his compassion made him assume others had it worse than he.
His default position, even when he knew he was dying—indeed, possibly especially then–was to assume his own good fortune. It would not have crossed his mind to ponder how long whatever he was thankful for might last, or fear that it would be taken away.
He never complained about his illness. It was more than just inherent optimism, but a state of grace.
I would look around a radiologist’s waiting room and see much older patients, and assume many of them had made choices which contributed to their condition.
At least once, Jim read my inner thoughts as I made this kind of internal survey of a particularly antique crowd.
He leaned down and whispered to me, “Other people are allowed to get older.”
Where I railed against losing my young husband; Jim recalled patients younger than he, and considered himself lucky to have lived to see all of his children become teenagers, and three of them graduate from high school and become young adults.
I saw overwhelming, endless days ahead dealing with the emotional fallout of his death for our children and, selfishly, for me; and he saw something everyone has to endure, and from which those left behind have to move on.
For any ordinary mortal facing his own death—and most certainly had our roles been reversed—I imagine there would be not just self-pity, but a symphony of self.
So far was Jim from viewing himself as the center of all things—so opposite was his life perspective than that of the narcissist—that he reduced the Most Momentous Experience a human can endure, dying from a terrible and inescapable disease process, into “one of those things” everyone has to deal with.
Being a pancreatic cancer patient, Jim said to his colleagues early on, easily could become a sad and uncompensated full-time job. He made it into something else entirely.
In an indelible moment during all of the endless hours we spent entrapped within the health care system, I am sure my voice was contorted with grief for a future without him there with us.
Imperturbably, as always, despite his increasing and by then ever-present pain, he told me, “You’ll get through it. Lots of people do.”
There is no rational sense in which it is easier to be the dying spouse than it is to be the surviving one: when it was suggested to me that my role was the more difficult one, I responded that I never had to say goodbye to my children.
But Jim truly believed my role was harder than his; he knew his suffering, his time, and therefore his very capacity to worry about us were finite, and that my capacity for worry is infinite.
There simply was no self-pity in Jim. He told me it would be harder for me in precisely this way: he would be gone, and I would have to go on, without him, for whatever came our way next.
Jim’s concerns were for others at every step of the way, and he felt that his was a shared experience—of everyone’s ultimate shared fate–to be openly discussed, and assumed that others had it worse.
Jim would not use the words “I have bad news” about himself because, no matter what he had to say, and even during the months he had lost so much, he never assumed he was the unluckiest man in the room.
In fact, as long as he had the capacity to form thoughts, and despite everything he had been through; even when he came home to die, he truly never considered himself the unluckiest person in the room.
(c) 2012 Stephanie M. Glennon
I am reminded for some reason, of the Tao of Pooh, a book that really made an impression on me when I was in my twenties and trying to make my way in the world. Jim had an amazingly balanced look at his impossible situation. Though one never knows how he/she will react given such a diagnosis, I am pretty certain I would be in a complete panic. To the outside world, Jim was as cool as a cucumber. I think his acceptance helped to guide us all through an unimaginable journey.
This quote’s for you Steph:
“It is very hard to be brave,” said Piglet, sniffing slightly, “when you’re only a Very Small Animal.”
Rabbit, who had begun to write very busily, looked up and said: “It is because you are a very small animal that you will be Useful in the adventure before us.”
― Benjamin Hoff, The Te Of Piglet
Steph,
I know what Jim meant regarding who has the harder role, the patient or the spouse. When I was sick, I felt that Gary had a much harder role. I had treatments to try. Gary had to sit by and be supportive. I knew exactly how I felt and how I was doing emotionally. Gary had to try and figure it all out because words can’t describe exactly what is going on. Most importantly, I was grateful it was me instead of my family. That gave me comfort, and I am sure Jim felt the same way.
You have amazing strength! Your blog has helped me and many others. I am sure of that. My friend, Kathy, who lost her sister this fall, wrote and said she can relate to what you have written, and it has helped. I thank you for sharing your thoughts and experiences.
I wholeheartedly agree. Jim took so much joy in every moment, and seemingly always had that smile, whether from the joy of family, the exhilaration of a slide down the hill, or the droll quip. Nobody could ever consider him the unluckiest person in the room.