The next morning the phone rang at 6:30 a.m. Karla picked it up quickly trying not to wake the baby. It was the nurse from UCLA saying Dr. Guzy wanted to see me today — as soon as possible. Could we arrive by 7:30 a.m.?
Karla said, "Yes. We'll be there." We stared at one another for about 15 seconds, both of us realizing this was not a movie and no one was going to yell 'Cut!'
We arrived at UCLA and I stared into Karla's beautiful, brown eyes. She looked so vulnerable, so young. This is when it hit me: whatever was happening to me was also happening to the people I love.
I could handle the pain; I could handle the fear; I could handle the unknown — because eventually I would become familiar with the unknown. This was going to happen to me whether I liked it or not. The unknown for me would become tangible. Karla, my parents, my sister — they would always be in a void of some kind. They would never feel the pain, only imagine the depth of it. I've learned their unknown is much more frightening than being the vessel experiencing the corporeal. Feeling things physically is concise and substantial — whether pain, discomfort or mental anguish. I, at least, would have an understanding and familiarity with this dark unknown. On the other hand, my loved ones would always be in the dark, unknowing ...
Whatever was about to happen to me became secondary. Whatever ordeal was ahead, my goal would be to keep my loved ones feeling safe. Never was there to be a single doubt; I would show no hint of fear. That was my duty. Now I truly was 'The Slave of Duty!' Soft? No edge? Ha! The ironies in life are comical. (I prefer my sarcasm served with a restrained tang of mockery.)
At 7:30 a.m, I watched the cardiologist carefully, studying him as he took a sip of water, smacked his lips, then looked 'beyond' us — avoiding any emotional connection — and with stolid temperament said, "Robby, you're going to need open-heart surgery."
My eyes went straight to Karla; she was trying to hide a flush of fright. I now had a real-life, highly dynamic task to use all my skills to protect Karla from her imagination. I began writing the script in my head (why couldn't Eric Roberts get this part?):
Close-up: Robby. We hear his (corny) voice-over.
From this second forward, no one worries. I'll be the best patient to walk the Earth and we'll get out of here as fast as possible. I'll heal and be back to work in no time. It will almost be as if I never had open heart surgery. And no one I love will ever feel vulnerable or frightened.
That was my script. I was simultaneously writing it as the cardiologist was talking. Happy ending — we needed a happy ending. Sure, conflict was good, but this would be a Disney film. The surgery will be shot with no blood. I'll heal in a montage. Our first weekend will be boffo box-office and Karla is already smiling. That is a smile, right? Crap — she's wincing. What is the Doctor saying? I watched his lips moving. "First you'll have to go through a series of procedures. Some will be slightly uncomfortable. Others will be invasive. We need to know everything we possibly can about your heart before we open up your chest."
"So, um ... " Karla was trying to absorb that image and still ask good questions, "Robby doesn't have heart disease, he has something wrong with a valve?"
"Robby's arteries are perfect. But, he has a congenital defect called a bicuspid aortic valve. Instead of three leaflets, Robby's aortic valve has two."
Bicuspid Aortic Valve
It's actually basic mechanics: simply put, a perfect aortic valve has three leaflets that open and close. This action allows blood to be pumped from the heart and sent to the body as they open, and stops blood from leaking back into the heart chamber as the leaflets close. Because I was born with only two leaflets, my heart was not performing properly and the pumping action progressively became highly inefficient.
Theoretically, this also explains why I felt better when I exercised. Exertion made my heart work harder and in doing so, it forced more oxygenated blood to the places that made me feel ... alive. My valve was now so damaged and the leakage so severe, that my heart had become enlarged to the point of looking like a "saggy water balloon." But I was not thinking about that, I was thinking: Maybe we should walk over and see what's playing at the movie theater down the street in Westwood. What I wouldn't do for some pop and a box of Hot Tamales... (Thank God Karla is taking notes!)
Somewhere in there I did hear the doctor say I'd need surgery in the next two weeks, as I was in danger of heart failure. And all along I thought I ate too much candy, not enough fiber, was over-stressed and was a hypochondriac.
Dr. Guzy's nurse handed us a few ever-so-slim pamphlets about heart catheterizations, valve replacement, and open heart surgery — but my eyes couldn't stop staring at the diagram where the foley catheter goes into the penis and stays in the bladder, thanks to the inflation of a small balloon. It may be juvenile, but that ... bothered me somewhat. Okay, a lot.
I kept thinking, 'It's amazing how little information we need for a surgery where they're going to saw my chest open and try to repair my heart. I'd get a bigger manual if I were buying a toaster.'
From I'm Not Dead ... Yet! by Robby Benson. Copyright 2012 by Robby Benson. Excerpted by permission of Valor Editions.