Mary T. Shannon
Leaning against the hospital bed's cold metal rails, I gazed down at my husband lying flat on his back. Under the harsh fluorescent ceiling lights, his olive skin looked almost as pale as mine.
We'd been in the outpatient unit since 6:00 am for what was supposedly a simple procedure--a right-heart catheterization to assess the blood pressure in John's pulmonary arteries. Now it was 3:00 in the afternoon.
Before we'd arrived that morning, John had seen the procedure as a chance to take a day off from the clinic where he practices internal medicine.
"I think I'll go out this afternoon and hit a bucket of balls," he'd said as we drove to the hospital. "My procedure shouldn't take that long."
"Are you sure you'll be up to golfing afterward?" I'd asked.
"Right-heart catheterization is a simple outpatient procedure," he'd answered, as if talking to one of his patients. "The pulmonary artery pressure will probably be somewhat elevated, just like the echo showed, and then the pulmonologist will decide if I need another medication, that's all."
After thirty years of marriage, I knew better than to force the issue.
John had never had anything more serious than a cold. Now a potentially fatal illness, pulmonary hypertension, had pushed its way into our lives. Suddenly the world looked different.
When he'd finally recovered from the procedure, John went to get dressed. I watched the nurse strip his bed for the next patient.
"You know, his blood pressure is awfully high," she blurted suddenly. "You need to be prepared, because you're the one who's going to be taking care of him."
Before I could respond, she walked away. I was stunned. Does that mean he'll be bedridden? I wondered. That he'll no longer be able to work?
John emerged, and we drove home in silence. I was too afraid to ask him what the nurse might have meant. John had always been the strong one, the one I'd come to depend upon. Now all that was about to change, yet I had no idea how or when.
In the following weeks, John methodically got his financial and legal affairs in order, giving careful instructions.
"When I die, I want my ashes scattered over the McKenzie River," he told me one evening.
This was the river near Eugene, Oregon, where we'd taken a guided fishing trip when we were dating; the same river where, as a child, John had spent many happy times cooling off on hot summer days.
I nodded wordlessly, unsure what to say. Is this it? I thought. Am I going to lose my husband, my best friend? Don't we have any options? Maybe we should get a second opinion....
A physician friend encouraged me to ask John's pulmonologist for more information, and John agreed that it might help me. He gave her permission to fully discuss his condition; I called and left a message.
Almost a week passed. Then she called back.
"I've got a message that you called," she began, sounding irritable and preoccupied. "I've been busy and working long hours. You had some questions?"
"Yes, thank you for calling," I said. "After my husband's procedure, his nurse said that I needed to be prepared, that I'd be taking care of him--but I have no idea what that means. How progressive is this disease?"
"I don't know why you're listening to a nurse, who obviously isn't a pulmonologist," she snapped.
"Well, uh...I'm concerned," I stammered. "I just need to know if I should be making plans to take time off work to care for him."
"I'm not here to give you career advice," she replied crisply.
"No, I'm not asking for career advice," I said. "I'm just trying to understand what I need to do, it's all been so sudden, and--"
"Don't make me the target of your anxiety," she interrupted.
"I just need more information about what my husband and I are up against, that's all."
Quickly, she reeled off some medical jargon--I found it incomprehensible--and ended curtly, "Now is that all?"
By the time I hung up, I was in tears--and I still didn't have any answers.
Was she simply having a bad day? I wondered. Did my vulnerability mark me as weak? Was she struggling with a crisis of her own--buckling under the stress?
I didn't know. All I knew was that I felt beaten up and bullied.
When I told John, he was surprised and disappointed.
"I'm thinking of writing a letter of complaint to the HMO," I said. "The way she treated me was so out of line and unprofessional--as a medical social worker, I feel ethically obligated to call attention to it."
"You should write a letter," John said. "It'll make you feel better, and hopefully it'll make her think twice before she speaks to a patient or a family member like that again."
He read my letter, and we both signed it. Then we discussed his illness in more depth: the various treatment options; the possibility of surgery; what it would all mean. We knew we had a great many decisions to make--and that, ironically, we'd have to make them without turning to John's pulmonologist for the kind of support and compassionate care that John routinely gave his own patients.
Dropping the letter into the mailbox, I thought of Anne Fadiman's book The Spirit Catches You and You Fall Down. She describes a Hmong man who needs to go to a specialist for treatment. Instead of asking about the physician's credentials or skills, he asks, "Do you know someone who would care for me and love me?"
That's what I need, I thought. Isn't that what everyone needs?
Two months later, John had open-heart surgery--a pulmonary thromboendarterectomy to remove the blood clots that were clogging his lung arteries and causing his hypertension. It took the surgeon ten hours to remove all the clots--there were many more than the tests had revealed--but once the clots were gone, John was "cured."
Without the surgery, he would have lived another year or two at most; the surgery literally gave him a second chance at life. Now back home, he's fully recovered and feeling much better.
Ironically, I'm the one who still feels wounded by the experience.
Sometimes I wish I could talk to his pulmonologist again.
"It's not just your patients who need care," I imagine telling her. "Their loved ones may also be suffering. It wouldn't take much to ease their pain--a nod of acknowledgment, a hand on the shoulder, a listening ear. That's all they need...that's all I needed. Why was it so hard for you to offer that kind of caring?"
I don't suppose I'll ever know the answer.
But if she could hear the question, she might realize the power her words have to comfort her patients and their loved ones--her patients-by-proxy, like me--who also stand in need of healing.
About the author:
As a medical social worker, Mary T. Shannon has used narrative as an adjunct treatment tool with great success. After earning a master's degree in narrative medicine from Columbia University in 2010, she formed Narrative Connections, a private counseling and consultation firm specializing in using story and art in the healing process. She is currently working on a collection of short stories and has recently completed a memoir, The Sunday Wishbone. "I have been using story as a form of self-healing ever since I can remember."