I'm Not Dead... Yet! (44 page)

After the towers collapsed, all cell phone signals were lost. It was the most frightening time in my life until the phone rang and I heard from Carleen Hussung Simone. (Karla and I introduced Carleen and Winston when I ran the New York Marathon.) Lyric was safe with Carleen’s mom Alleen and they were heading up-town to Carleen and Winston’s apartment.

But the phone never rang for Sam Ellis. Val didn’t make it down those stairs.

Valerie Silver Ellis died in the towers on that day. We lost our dear friend, and like so many families, to say we were ‘at a loss’ is an understatement—we were never the same; we will never be the same.

9/11 has a history with all of us. If having heart surgery makes us appreciate every single breath we take, September 11th is another example of the existential world we live in and to… love and appreciate each moment of life.

I dove back into work and my writing. The moments in
Open Heart The Musical
which had to do with life and death had now become more personal and meaningful to me. With this momentum and purpose we sped to the next incarnation of the show, which had a run at the Falcon Theater in Toluca Lake as a musical workshop.
Open Heart
starred Karla (of course), Stan Brown (my ex-master student extraordinaire from the real USC), and me—writer-composer guy who couldn’t breathe when he had to sing. That was a tough one. But we were successful and our hopes to go to New York with the show were brighter and brighter.

I can’t condemn everyone in TV
because that would be false and unfair, but the business of making TV shows became surreal, Fellini-esque. The ‘I Don’t Care’ Syndrome was now an epidemic and that seemed to lead to a lack of quality control which in turn seemed to change the face of television and bring us ‘reality TV.’ In my early years as a TV director, I was always so enthusiastic that we could build comedy beginning on a Monday and shooting on a Friday. It reminded me of theater on steroids: get the show up and running in 5 days. Unfortunately—when an Executive Producer shot an entire season of a show and then walked up to me with a straight face and asked, “Have we been shooting film or video?”—the fun, creativity and fulfillment began to be bleached from my soul.

I began directing TV because it was fun, creative and fulfilling.

I stopped directing TV because it took on a personality of a rabid, demented, possessed mania that started ‘at the top’ and suddenly the director became a worthless traffic cop who was pushed aside by the show-runners and every DGA rule was broken as the writers, creators and show-runners refused to follow protocol and began giving direction to the actors and too much money was at stake for anyone to stop the madness. You will find many top directors who will secretly corroborate my beliefs but would never ever jeopardize their paychecks for their families by being foolish enough to yell it from the hill top (or write it in a book…)

Karla helped get me out of the self-destructive cycle I was in as a TV director; always believing that everyone should care; thinking foolishly that we were trying to make the best shows possible, rather than facing the truth: we were filling time and space in between commercials.

There are many ways one can be an advocate for a loved one, friend, family…. One way is merely to listen with an open mind and then take over, control the situation because ‘the one in need’ cannot fend for his or her self. Of course, there are 99 other ways to do it, if 100 means, “Get out of my way—it’s going down like this!”

Karla and I began as “children” (mentally) when we faced my first open-heart surgery and we were like most people I know, completely under-educated and so confused that we had no idea what to ask doctors, surgeons, nurses friends, and family—we didn’t know how to reach out for help because we thought we were completely taken care of by the hospital. Never, ever believe this to be the case. We are basically just numbers, bodies, flying in and out on the conveyer belt of life and the pursuit of health and insurance. We learned the hard way: by becoming experts through necessity and practice (4 open heart surgeries are rare so if at first you don’t succeed, try, try again to not get suffocated in fear, paperwork, bewilderment, ignorance and the lack of mental endurance needed to run this medical marathon, whose rules change constantly.

I have already and will continue to point out that Karla became ‘my’ advocate because without her help, there are so many things I would never have been able to accomplish—some of those things are as simple as just getting a ride home after hearing news that is life-changing. But, then there are the obvious: questions we all forget to ask, so someone does research on Google and prepares and brings a pad of paper—and is not afraid to ask delicate and sometimes embarrassing questions. Karla also became my defender: “Robby is asleep now and we should not wake him up.” As simple as that seems, it’s huge. Food. Karla brought home the bacon and prepared it, too (even though it was fake bacon with no nitrates). Healthy foods. Foods to avoid. Medicines and when to take them—on an empty stomach—on a full stomach. These things seem trite but honestly, they are life-saving and are a daily requirement. Being tough at a doctor’s office: “Excuse me but we’ve been here for over an hour…” Yes, being the bad guy, “Robby cannot walk there, please bring him a wheelchair. Do I have to say it 5 times?” The mountain of endless paperwork that can put the advocate in the hospital.

There is also the ‘responsibility of the “mood-game-changer” that goes with being the advocate. I’d say that like on an athletic team, this is a character issue that is undeniably dominant in its essential significance, but it doesn’t show up on a stat sheet after the game. The ability to keep things ‘light’—funny—to be able to deflect the ominous and see it coming just as a cornerback sees the tight end sneaking into the middle of coverage to gain crucial yardage—the advocate plays great defense with peripheral vision and denies considerable yardage gained by negativity by seeing it coming and being the ultimate team player.

I recently had the opportunity to be an advocate for someone I love dearly after an operation in Dallas. (I’ll refer to her as ‘Mrs. Smith.’) The operation made Mrs. Smith’s legs swell with fluids post operative. I knew this to be normal but no one said a word to her that this was a possible side effect from surgery. Instead, with Mrs. Smith becoming bloated and her legs swelling to a painful size, a nurse mentioned that she might have internal bleeding from the operation, and uttered the words no patient ever wants to hear: “They may have to take you back into surgery.”

This caused quite a disturbance in the room. In the meantime, the nurse was taking Mrs. Smith’s vital signs. I noticed her blood pressure was not only stable, but it was better than mine. I also looked at her heart rate and it was at a steady 63 beats per minute (very good). Finally, I saw that her oxygen saturation was 100 percent. Perfect. My knowledge immediately told me that if she had an internal bleed that was causing the swelling, her vital signs would tell us a different story, rather than all being very stable.

Because of the hysteria that the nurse had caused by announcing a possible trip back into surgery, Mrs. Smith’s surgeon made it into the room and in the most contemptuous and aloof tone, told her there might be internal bleeding because “sometimes things get nicked and we have to go back in and repair the bleed.”

I looked at His Arrogance and muttered: “Her blood pressure is stable. Her heart rate is that of a runner’s,” (the patient was an avid exerciser) “and her oxygen saturation was at 100 percent. Wouldn’t one of these vital stats be rising or plummeting if there was an internal bleed and the body was reacting to internal trauma? Wouldn’t it be a more likely signal, based on her vital signs, that her body is reacting to the surgery itself with protective fluids ?”

He turned his up-turned nose at me and as if it were the hardest thing he ever said in his life, “Yes. You’re probably… rrrrrrright.”

But he refused to give up there—and honestly I was glad. He ordered Mrs. Smith to have an immediate contrast dye MRI.

We were all slightly relieved because even though my own medical history gave me reason to believe Mrs. Smith did not have an internal bleed that might warrant her return into surgery, I still wanted every precaution to be taken to make sure the Mrs. Smith was okay. And really—what could go wrong with a contrast dye M.R.I.? Oy.

So, in about a half hour, Mrs. Smith was returning from her procedure when I noticed that her bed was actually bypassing her hospital room!

I jumped to my feet and ran into the hallway and asked, “Where are you taking Mrs. Smith?”

“This is not Mrs. Smith. This is Mrs. Garcia!”

I was told this by a short volunteer who was very proud of the work she was doing and wanted to be ‘super-responsible’ according to her.

“I assure you—this is Mrs. Smith! This is not—NOT—Mrs. Garcia! Look at her wrist band. Look at her chart.”

She grabbed her chart—and it was the chart for Mrs. Garcia.

“This,” she said with great pride and assurance, “is Mrs. Garcia.”

By this time, Mrs. Smith managed to say, I am not Mrs. Garcia. I’m Mrs. Smith.”

“No. You are not! You are Mrs. Garcia!”

This continued like a Marx Brothers skit as it turned into a tug-of-war with Mrs. Smith’s bed—with me at one end and the volunteer at the other, struggling for the control of Mrs. Smith-Garcia’s destiny.

Finally the floor nurse showed up and took over and put ‘Mrs. Smith’ back into our—the correct—room.

But where on earth was Mrs. Garcia? (It sounded like a children’s game, like Where’s Waldo.) To this day, I still imagine poor Mrs. Garcia floating from procedure to procedure traveling around the hospital and never quite making it back to her room.

Being an advocate is like being a Man Friday, ready and willing to help in any and all ways. A good laugh, a sense of strength but not bravura, and always a calm voice is good math for any advocate.

Sometimes, just showing up means the world to a patient. I have a friend and former student, Kyle O’Tain, who is like a brother to me. He is miraculous and has the spirit of a champion. Kyle needed a lung transplant and was hours away from death. Just having certain people show up at his bedside gave him strength. People who had no reason to be in NYC came by planes and trains to be remind this unique young man how remarkable he is. I’m so thrilled to say that Kyle got his lungs and even though he still must face the harshest reality of all, Cystic Fibrosis, he can now breathe for the first time in his life. His remaining years will be about the quality of life not the quantity; Kyle understands this and spreads love every moment of his life. He’s a hero of mine.

Please sign up to be an organ donor. It’s easy to do when you get your driver’s license, but you can also have this placed on your I.D. for people who don’t drive and live in big cities like New York. Spread Life. Spread Love. Become an organ donor. And while I’m at it, please go to your local school or Red Cross and give blood.

(Thank you…)

I went back to the ‘cardiologist to the stars’
right before we left Hollywood—one year later, as instructed. He quickly came into my room, and with gallant urgency, told me I had a problem. No wonder I couldn’t breathe.

“Thank God for the tests!” he said.

“I didn’t take any tests,” I said quietly.

“What are you talking about?” he asked. “I’m holding your tests right here. These tests clearly show…” His face blanched. I could not have directed it better. His honest horror was absolutely perfect. Cut, print—that’s the take!

The ‘cardiologist to the stars’ looked at the date on the tests and read that they were from
last year
. Yes. He was reading
last year’s tests
.
For the first time.

I realized my cardiologist was merely a TV Executive in a white lab coat. I knew Hollywood was just not for me anymore.

If this was the best I would ever feel physically, it was clear that we had to change the game plan. Immediately. Everything in Hollywood was a reminder of judgmental attitudes, inflated expectations, greed…did I say greed?

Karla and I have spent our lives dreaming; we were ready for another adventure. The screening room in my brain projected that we would ‘go to Carolina in my mind.’ And soul. It was a rhapsodic, etherial vision of North Carolina. A place where I could
breathe
.

It was the fall of 2002. Lyric was still at NYU; Zephyr was now in the 5th grade. We talked with Zephyr about making this life-change, and he was on board. I went online and bought tickets for a flight to Charlotte. I was finally dreaming again!

But Karla’s job was navigating everyone’s well-being, and Zephyr would be missing school in L.A. if we left now. So she asked me if we could put off our trip until he had some vacation days.

In a moment of absolute clarity, I turned to Karla and said, “Are you going to save my life by getting me out of here or not?”

Our intention was to drive
through North Carolina, looking for a beautiful places to live near a university: Davidson, Duke, UNC, NC State, NC School of the Arts.

We stayed with our good friend Dee Rinker
in Davidson.

Her daughter Audrey, a Duke grad and a phenomenal young woman, nannied Lyric while we shot
Modern Love
in 1989. Dee and her husband Dave (the USC architect who designed the Koger Center) became our close friends. After Dave died, Dee moved to North Carolina.

Dee was a a great sounding board and mentor. She lived on Lake Davidson, where Karla and I went swimming and kayaking with Zephyr, dreaming about living on a lake. No matter my limitations, I never stopped exercising after my second surgery. My goal was to give my family a great quality of life—and I didn’t want to be the one ruining that opportunity.

Dee called Kay and Frank Borkowski. Frank was the Chancellor at Appalachian State University. When she told them our plan, Frank and Kay said “Do not let them leave the state without coming up to Boone.” They invited us to spend three days with them at the Chancellor’s house and take a look around. “It would be a lovely place for you to teach and Karla and Zephyr will adore it up here.”

‘Up?’ I kept wondering what they meant by ‘up.’

Dee drove us ‘up’ the mountain: 1,000 feet; 2,000 feet; 3,000 feet… We had lived at 6,800 and skied at 10,000 feet in Park City, but that was thirty-five minutes from a great hospital and an international airport in Salt Lake City (important things on Karla’s checklist). Boone was two and a half hours away from anything that looked like civilization to us. When we saw a permanent sign that read:
Fog Likely Next 8 Miles.

I thought, ‘All year round? Whoa!’ Karla said, “Darling, I think this might be a bit remote.”

There was one way up to Boone from Charlotte and one way down without going forty miles out of the way. (Since we’ve moved, they’ve widened the ‘narrow’ road up the hill.) Navigating the narrow winding road cut into mountain probably was a piece of cake for the locals, but huge trucks flew past us heading down the mountain at speeds that took my breath away. (I finally had a reason not to be able to breathe!) This drive was the perfect place to teach the ‘Doppler effect’ in a sound class. If you were brave enough to de-claw your fingers from the seat of your car, one could record pitch rising in tone as a truck approached our car, and sliding down the musical scale as it passed while its sonic wave lengths changed.

The last thirty minutes revealed the incredible timeless beauty of the Blue Ridge Mountains: heavenly vistas in all directions, with the highest peak Grandfather Mountain in the distance.

Route 321 was the main drag bringing us into Boone, and we were disappointed to find it looking like any other strip mall laden suburban town in America. No official city planning going on here. A local candidate had put up a good fight to ban billboards a few years back, but was voted down because as we were told, “Mountain people are independent. They don’t like to be told what to do on their property.” Hmm...

None of this boded well for us or our expectations.

When we arrived at the Chancellor’s home we were greeted with open arms by the Borkowskis. Frank had been Chancellor at Appalachian State for ten years, enhancing its national and international reputation, taking it from a quaint teachers college to #4 on
US News and World Report’s
top public universities in the South. Frank and Kay looked at the world from an artist’s perspective—both talented musicians. They saw what we had accomplished at USC and were anxious to have me take a full time position in the Theatre Department. Frank’s vision was for me to create filmmaking classes as a bridge between the Theatre and the Communication Departments.

Showing us around the small but well planned campus, students everywhere greeted Frank, stopping to shake his hand and giving him the thumbs up sign—it was obvious he was well loved. This time our first stop was
not
at the football stadium (where they had one of the best Division II schools in the nation). It was so refreshing to go to the different buildings of education without being wooed by the athletic department.

Finally, we arrived at the building that housed the Theater Department. It was… whimsical. Lovely. The Chair and faculty seemed passionate (passionate is not a derogatory term when it comes to teaching). Frank introduced me to the Dean who was thrilled I would consider a position at Appalachian State. He wanted me to keep my ‘working professional’ status, in film, TV and theater projects, including our New York-bound musical,
Open Heart
—bringing national recognition to the school. Suddenly I felt like I wouldn’t mind trips away, knowing I would return to Boone.

Karla wondered if Frank had plans to retire any time soon. If we were going to change our lives and relocate here, it was important to know the man who had the vision, who valued what I could bring to the program, would be there to support me.

Kay said, “Oh no, we plan to stay here at least two and a half or three years.”

The smell of the country air was sweet and lacked the ‘chromatic brown’ smell of Los Angeles. Yes, after all our years in Hollywood, I can say it with certainty: chromatic brown qualifies as an adjective for the scent of LA smog. So the Benson-DeVito clan began a conversation, keeping our options open and our possibilities pure (to quote a Karla DeVito song):

“Are you sure this isn’t a bit remote for you?”

“What if something happens to your heart? It’s a two and half-hour drive to Charlotte. Impassable in fog, or a blizzard.”

“They have helicopters. Don’t they?”

“Do we need to buy a gun?”

“We have no friends here.”

“Did you say a gun? I don’t want a gun!”

“Did you say a helicopter? Helicopters are scary.”

“Helicopters aren’t scary. Guns are scary.”

“I’ve heard about crystal-meth labs up in dem dar hills.”

Then the gut checks became more positive:

“I don’t want to make fun anymore. This place - and the people - it’s pretty cool.”

“They have a great public school system for Zephyr.”

“I loved my public school education. Hurray for public schools!”

“Zephyr loves basketball. We’ll get Mountaineer season tickets.”

“The University is small but Frank has it on a great path.”

“Kay and Frank are our friends.”

“I still don’t want a gun.”

We threw out our long list of North Carolina destinations, looking no further than Boone. And that was that.

The gorgeous surroundings of the Blue Ridge Mountains
gave us butterflies in our stomachs, legs, any and all places butterflies can exist in adventurers. We experienced this heady feeling before, when we went to South Carolina and Park City.

Telling my family that we were moving again was difficult. For seventeen of the twenty one years Karla and I were married, we lived within a 5-mile radius of my parents. Or should I say, my parents lived and sister lived in a 5-mile radius from me. They were the ones always trying to keep our family close. And I was the restless one who would always seek new adventure. What made this decision more urgent was the need to flee the business that loomed over my every move, every phone call, every trip to the grocery store in Los Angeles. My second heart surgery left me with no physical reserve to push through. I had reached my limit.

I tried to be stoic and foolishly hide most of my problems from my parents—so they weren’t acutely aware of my situation. I was in real physical and mental trouble. When I’d mention the creative(-less) forces I had to deal with daily, my folks would remind me I was generalizing and say I would eventually find the right fit. But they had been out of the business for years, so how could I expect them to understand my plight? I’m sure my dad, in my shoes would have done the same. I’m sure of it. He raised me ‘right.’ My heart felt like it would explode in Los Angeles. Although I would desperately miss my parents and my sister, leaving was a matter of survival.

Our house in Toluca Lake sold quickly
and when we returned to North Carolina we went looking for a home.
Lyric suggested we look for ‘cow property.’ Cow property? A pet? A cow?