In upcoming weeks I will be speaking at several different hospitals about my husband’s and our family’s wildly varying experiences with hospitals and treating physicians during the course of his terminal illness.
I have been told no one remembers hearing from a patient’s family at hospital rounds. This does not surprise me. Who, after all, would want to continue revisiting and answering questions about such dark days? I do it in honor of my husband, a physician who dedicated his professional life to trying to deliver better health care to everyone.
While I am a great believer in telling people what they have done well, I think in this realm there is little room for improvement if one hears only the good stories.
It remains within my wheelhouse to recount the good and the bad in excruciating detail. As for my own style of delivery, which could not be more different than my husband’s gentle diplomacy; let’s just say my father-in-law never laughed so hard as he did when I once described myself as a wallflower.
I imagine that rarer still than hearing from a dying patient’s family about the details of his experience in the health care system is something I read this morning, which requires a gifted writer indeed: a patient’s own account of his prolonged, aggressive treatment for a rare cancer. He is in a position to write and speak about things I cannot, including the pain he felt from frequently-used medical procedures, from his treatment, and from the complications of his cancer; and to explain what it is like to be the patient thus afflicted.
Christopher Hitchins also wrote harrowingly of the physical sensations of his own experimental proton beam therapy for a cancer that proved terminal.
Such a writing style is something only the patient himself could offer: my husband could be nonplussed, even witty, in response to a medical development that would bring me to my knees. During his final seasons he frequently offered his own wry laugh lines–and even a practical joke just two days before he died–when he knew with mathematical precision how numbered his days were.
Writing about anything else, my style is that of a different person. But I only can think and write and speak about my husband’s ordeal through the one-note prism of bottomless sorrow.
On both technical and substantive grounds I am limited in what I can offer: I couldn’t even begin to describe my own labor pain, but for knowing that it paled next to my husband’s pain as his symptoms took hold.
Mark Dery’s “A Season in Hell” quotes Elaine Scarry: “physical pain—unlike any other state of consciousness—has no referential content. It is not of or for anything. It is precisely because it takes no object that it, more than any other phenomenon, resists objectification in language.”
There are many things I cannot describe and cannot convey. But I hope I can offer something: someone should know about the compassionate care my husband received, including the seemingly small acts which truly mattered and will be remembered–like the hospice nurse who came to our home to “declare” my husband, as the euphemism goes, and who spoke gently to him as she did so, addressing him as “Dr. Glennon” when there obviously was no need for her to speak to him at all. And after she was done she looked across the room at me, as I sat stunned and dissolved, and said my name and held her clasped hands to her heart. She knew she didn’t need to say anything else.
And people in a position to do something about it should know about the harsh, unfeeling way other health care professionals dealt with my husband. I’m the only one who can speak about that now, and try to ensure no other patient and family is treated that way again.
(c) 2012 Stephanie M. Glennon