#SOL16: Live Brilliantly

Birds Lifting (M.A. Reilly, 2010)

Family and friends surround my husband. It's his first day in palliative care and one friend has brought music. I'm given Mardi Gras beads to wear and do so. Think cocktail party without the booze. Clusters gather and chat, shift, chat again. Chairs from other rooms are procured. People move in and out of the room and I too am caught up in a lengthy conversation when I notice the loud quiet that surrounds Rob, who is reclined in the bed at the center of the room.

He's already leaving. A foot here and the other somewhere else.

I study him, this man who knows some secret of immense value that the rest of us cannot discern. He's my best friend, lover, confidante, husband, father of our child, business partner, co-writer, holder of my future plans. We were supposed to retire. We were supposed to travel the world.

A few hours after we learned that the cancer had metastasized to his liver, spleen, ribs, and sternum and that he was too weak to receive opdivo, I lean across him, sobbing--confessing that I do not know how to face a future without him.  He answers immediately.

"Live brilliantly," he tells me. "Don't you dare hide yourself. Don't you do that. Live brilliantly."

#SOL16: Palliative Care

Circa 1967 (M.A.Reilly, 2009)

I.

It's late and still the noises from the high flow oxygen machine and the air mattress machine fill the hospital room. It's nearing 3:00 a.m. and Rob and our son are asleep--Dev on a pull out bed, Rob in a hospital bed. I can't find sleep no matter how hard I chase it. Tonight, I just want to watch the two men in my life who mean the most.

In the palliative center of the hospital there is a different kind of silence. During the last 45 days Rob has been a patient on most every floor of this hospital from ICUs, to a step-down unit, to cardiac, orthopedic, surgery, and oncology floors. We are all exhausted here: bone tired from chasing the elusive cure that cannot be had while all the while missing the simplicity and certainty of home. In the hospital, the sounds of testing and response, gurneys being wheeled, disembodied calls of pain, vitals check, late night meds, and so on disrupt most moments of silence. There is always noise. Noise beyond the door and within the room on the hour, each hour.

I I.

But here, the hallways beyond patients' rooms are oddly quiet.  Here no one dressed in a hospital outfit delivers food at the prescribed breakfast, lunch, and dinner hours.  Talks of the next test, the next drug, the next procedure have been silenced. There is a kindness here that is consistent. It's all about comfort and there's a roominess that happens when scientific cures no longer masquerade as the discourse of hope.

Pass another caregiver in the hall and there's a sense of knowing one another.
We are deeply (other)wise.

Here, medicine and science, so pronounced in all aspects of the hospital take a backseat to hope and the still tangible desire for a miracle.

Here God is more in the house than not.