Love in the Time of Sickness: December 4, 2012

December 4, 2012 New York City / Florida

“But I don’t want to go among mad people,” Alice remarked.

”Oh, you can’t help that,” said the Cat: “we’re all mad here. I’m mad. You’re mad.”

“If you want to see David before he dies then you have to fly to Florida today.” My estranged sister, Marie, of almost my whole life rattles off like an item on a to-do list as my hand clutches the phone tighter against my ear in disbelief. The muscles around my mouth tighten up and begin to twitch. My hands start trembling and within seconds my head feels like it is detaching itself from my head. I hear a loud blood-curdling wail like the one I always imagine when I look at Edvard Munch’s ‘The Scream’ and then I realize the frightful howl had come from me.

Marie books the wrong flight to the wrong city and has me do the same believing it is the fastest way to get there. She’s always assumed she has all the answers having been in therapy for over 30 years and having become a Buddhist at the height of its popularity in the 1990s. We end up having to drive yet another two hours after landing in Florida to get to Shands Hospital in Jacksonville. It’s a difficult drive because on top of everything we’ve stopped speaking to each other. Being in her company is never comfortable. After hugging me at the airport earlier and telling me she missed me, her eyes welling up with tears, once we’re on the plane slips back to being the mean person she always is to me.

“Don’t talk to me during the entire flight,” she instructs as if out of the two of us it is her who is the adult. “I have to read this book.”

I peer at the cover. It is the Tibetan Book of Living and Dying.

“And,” she continues, “don’t tell Angie I’m going to read some of this to David.”

“Why are you going to read any of that to David?”

“For his transition into the next life,” the words drip with hostility because I am not the enlightened creature she is.

Just before midnight, 14 long tortuous hours after her phone call of that morning, we park the car, and make our way through the cavernous deserted hospital to the intensive care unit where we find David.

What I see is shocking beyond all of my dreaded imaginings while on the way to him.

David’s body is motionless. He’s lying in the middle of a large room on a hospital bed hooked up to all kinds of beeping machines with green blinking dots and rapidly changing numbers. The right side of his body is slumped grotesquely to the left almost as if he is broken in two. Pillows are wedged beneath the right side of his body from his face down to his thigh to keep him from slumping even further.

But even his visibly broken body isn’t as terrifying as the restraints. Both wrists and ankles are anchored tight to the bed frame. His paralyzed right side and his good left side.

Everything is topsy-turvy and inside out and nothing makes sense.

If David has suffered a physical stroke at this moment I suffer an emotional one which will hold me in its grasp for years into the future.

Afterwards, when I become immersed in hospitals and nursing homes and the health care system concerned only with the bottom line, I would come to know the U.S. Department of Health and Human Services concluded that hospitals failed to report more than 40 percent of deaths related to restraints to The Centers for Medicare and Medicaid Services (CMS). So that at a moment when David is at the cusp of death instead of being comforted the hospital put him at risk of dying from either strangulation or aspiration.

Marie stands to the left of him while I stand to his right. What I don’t fully realize is that he can’t see me. The whole right side of his body is paralyzed and his vision has also been affected.

“David,” we both say at the same time. His eyes open up really wide and his pupils begin darting around the room like free floating marbles as he tries to find us.

I place my hand on top his icy one. It feels more like rubber than skin. His fingers don’t respond to my touch.

He weighed approximately 280 lbs before the stroke and had been as fiercely strong as a lion. I’d recently watched a film on rescuing a beached whale and her baby. For some reason as my eyes follow the contours of his body, lying there still, he appears to me to look like a sea creature. Like the baby whale waiting for someone to help him. The lion in him is gone.

My body involuntarily jerks away from his lifeless form. I feel my back hit the wall behind me and my legs go numb. I drop to the floor crumbling like pieces of dry orange leaves carelessly trampled upon. My knees point in one direction. My shoulders point elsewhere. I’m askew. My sister gives me the evil eye placing one finger in front of her lips warning me not to cry. I place both my hands over my mouth to muffle the primal screams.

I semi crawl back to David’s bedside and pull myself up. His right eye is limp and droopy with long teardrops sliding down the side of his face and into his ear. I fish for tissues and dab at them unsuccessfully.

His eyes finally fix on our bobbing heads above him. He recognizes us.

I’d heard Angie tell Marie as we parked and she was leaving that David hadn’t made a sound. Nothing for a couple of days.

David’s eyes suddenly lock into mine and he opens his mouth wide. Two terrifying loud guttural cries come out which he repeats frantically. To me they sound like two different pitched sounds. High low. High low. High low. “Help me! Help me! Help me!”

“David, let it out, it’s okay to cry. Let it out,” Marie places her hand on his shoulder. “Let it out, it’s okay.”

“He’s trying to say help me,”

“No, he’s not,” she retorts.

“David, are you trying to say help me?” my eyes are glued to his terrified contorted face.

He stops screaming. We exchange a knowing look he slowly moves his head forward in a yes.

“We’re here to help you,” my sister and I say in unison. “We’re here to help you.”

. . .

“Would you tell me, please, which way I ought to go from here?’