Linda E. Clarke
Once upon a long eighteen years ago, I got sick.
I was just finishing ten years of hospital-based ethics work, and at first I thought that the work had made me sick. I thought that the stress of hearing so many difficult stories, of witnessing so much suffering, was hurting me. I was wrong.
I was sick from a growth in my brain.
The growth was found after I’d shuttled from doctor to doctor, from appointment to appointment, from X-ray to scan. It took a long year. By then, my pain was clothed in shame. Undiagnosed pain does that: It draws the gaze of friends, family and providers. Everyone looks for the cause.
“Soul pain,” said one doctor. “Anxiety,” said another.
The surgery went well until, towards the end, I bled heavily. My brain was awash with blood; my ventricles (the brain cavities that produce spinal fluid) were filled with it. Afterwards, in the neuro ICU, the pressure in my brain was monitored and the blood, oh so slowly, cleared.
Winter melted into spring during the month I was there.
When I could finally open my eyes and look around, the world was far away from me–busy, occupied. Despite having visitors–my husband, my friends–I had no part in it. Being sick is lonesome: Pain is a great isolator.
I didn’t hate the ICU, although it continually baffled and surprised me. Nothing in my life had prepared me for living there–for the tubes in my brain, the sounds of the monitors, the recumbent figures of other patients around me. I had been sick for a long time and was still sick, although getting better. I needed the sanctuary of that place, the permission to stay apart from the world for a while longer.
Late one night, the ICU doors slammed open and the lights blazed on, pulling me from sleep. A band of people hustled a gurney through the door and towards the center of the unit. Watching from my bed, I couldn’t see the patient, but I did see the equipment piled on the gurney with her. As I drifted in and out of sleep, they settled her into bed, and her monitors’ sounds joined the unit’s ambient noise.
I soon learned her name, Moira, and that she had been in a serious car accident.
When Moira arrived, I was just starting to be able to get out of bed. At first I needed a wheelchair, but soon I was walking, slowly.
With the nurses’ permission, I gingerly left the ICU to walk the halls of the neurosurgery and trauma floor, just outside the door. I would unhook myself from the monitors, hang onto a pole my IV bag and the bag draining fluid from my head, lower myself carefully from the bed into my white running shoes and put my tartan bathrobe on over my gown.
I never ventured far. In those hallways I would smile at anyone who smiled at me. I usually ended up in the patients’ lounge, where I’d rest for a bit before heading back to the ICU to crawl into bed, hook up my tubes again and tumble gratefully to sleep.
Once in a while, on my hallway walk, I would meet someone who was there to visit a loved one in the ICU, and we would chat. That’s how I got acquainted with Moira’s father, a handsome man with thick grey curls, fair skin and dark brown eyes.
One evening I met him standing by the window, looking down on the city. He smiled and greeted me.
“Good to see you up and about.”
“It’s good to be up and about,” I answered.
“How long have you been in”–-he nodded towards the ICU-–”this place, then?”
“A few weeks.”
“How are you doing?”
“Fine, I’m doing really fine.”
We met one another that way many evenings. He would give me updates: Moira had suffered a serious back injury, and they would have to do surgery–they were waiting for her to stabilize; they still didn’t know if she’d walk again.
He would always ask how I was doing and compliment me on my progress. I would tell him that I was fine, and that I hoped his daughter would soon be as fine as I was. In some way, I realized, I’d become a touchstone for him–a marker of hope and progress. And for me, he was a chance to connect with someone who was from the outside, and Moira was a chance to focus on someone besides myself. It felt like life.
In the evening, with the day’s buzz of activity over and most visitors gone, the neuro floor and the ICU would settle into a sort of peace.
On my last night there, I stood by the hallway window and looked out over the city. The darkness outside the windows soothed me. The drain in my head had been removed, and I was feeling well; despite my nervousness, it was time to go home.
Moira’s father joined me. He held a paper bag in his hand.
“I hear you’re going home, then?”
I nodded. “Yes, finally. I’m going home tomorrow.”
“Well, I’ve got something for you,” he said.
He reached into the bag and pulled out a can of Guinness Irish Ale. I smiled at that; we’d talked once about Guinness, and how we both loved it.
“I know you can’t drink this yet,” he said. “But when you can, I want you to enjoy it. And when you do, I want you to promise me that you’ll raise a toast to Moira.”
He handed it to me, and I put it into my bathrobe pocket.
He kissed my cheek.
“I wish you all the best,” he said.
I watched him go back to the ICU, where I knew he would sit at his daughter’s bedside.
I looked out the window one more time. The world looked beautiful in the velvet darkness. Then I went back to my bed one last time.
Home wasn’t easy, not for a while, but time passed, as time does, and I could see normal life on the horizon. It was a dogged, one-day-at-a-time return. Summer was thick with heat, and the Guinness beckoned to me from the fridge, until the quiet evening came when I knew I could drink it.
I had, that day, cut the grass and had managed to stay on my own two feet. I felt proud, so we drank the Guinness, James and I–and we did toast Moira and her fine father. And life moved one step closer to being normal.
About the author:
Linda E. Clarke is a writer and performance storyteller. She has worked in healthcare humanities for close to thirty years. Her work started in clinical ethics, in three Toronto hospitals. She moved her story work into her ethics work and since then has published, performed, taught and directed widely on the value of story in health care and medicine. “I’ve worked with so many fine people, learned from the most generous of teachers. I have heard so many stories told from the deepest of places, and I have been changed by each of them.” She has been working on a collection of stories about neurosurgery, The Brain Tales, part of which is a collaboration with Michael Cusimano, her former neurosurgeon. Their story is being developed into a play, Dancing with Dr. C.