by Kathi Koll
Finally, I drove into the hospital emergency entrance, parked, and ran through the swinging doors. I felt a rush of panic as I tried to find him. An administrator immediately took me into the ER where Don was lying on a gurney, just back from having a CAT Scan. We hugged each other tight. It was the first time I saw a look of fear in Don’s eyes. That unsettling look from my Rock of Gibraltar scared me. Don the eternal optimist was scared, and he knew why. The doctor told him that there was a blood clot in his brain. The science-speak for what happened was a vertebral artery occlusion, which resulted in a medullary stroke. Basically, a blood clot in his brain caused him to have a brain stem stroke. A clot buster called T-PA was administered straight into the clot through his microcatheter. Over the coming years, I would speak the jargon just as fluently as the doctors.
Understandably nervous about having a stroke, Don and I had joined a group of friends at UCLA three months earlier for a private tour and lecture with the head of neurology. UCLA was the number-one stroke center in the country at the time, and Don was happy to know it was in our back yard. As we left the meeting he said, “If I ever have a stroke, I want you to know that, whatever it takes, I want to be here.” Here we were at a different hospital, nowhere near where Don wanted to be. Hoag was our hospital of choice for many medical situations, but in 2005, their stroke center was small and brand new. It has grown immensely and is very impressive today, I might add. Don looked at me once again with that unsettling look in his eyes. I whispered in his ear, “You want to go to UCLA, don’t you?”
“Yes,” he said.
“Don’t take this personally,” I said as I told the doctor we wanted to helicopter Don out immediately. “It’s because of our recent experience at UCLA and my husband’s comfort level there. We don’t know you, and you don’t know us.”
“You’ll be losing precious time,” the doctor said, reminding us of that critical three-hour window. “There’s a good chance your husband won’t make it that long. You will be taking a tremendous risk moving him.”
“Don, this is your life. This decision has to be yours. I can’t make it.”
“Let’s do it here,” his voice was hardened with finality.
Before we could catch our breath, Don was being prepped for surgery. I didn’t leave his side for a moment and felt as if I was about to go into surgery, too. It was me. It was him. It was us. We were one, and this was our problem. Whatever the outcome would be, no matter how frightened we were, we were in it together.
There was a lot of commotion. So many, many people coming and going. My mind was racing, my feelings raw, my everything swirling. The experience was so alien to me. I was trying to hang on. This couldn’t be happening. I stayed close to Don and held his hand as he was wheeled down the hallway to surgery. But this was good that everything was happening so fast, right? He had done everything right. Time was on his side. Right? I just knew I’d see him again. This couldn’t be the end.
Everything had been so perfect this morning. So incredibly beautiful.
He looked at me one last time before he was pushed through the heavy double doors to the operating room and said, “I love you.”
I had no idea how long or how invasive the surgery would be. My family and Don’s rushed to the hospital, where we all waited in one tiny waiting room as time was ticking, ticking, ticking away.
After the surgery, the doctor looked weary but determined. “Don’s clot is as hard as a jawbreaker, but it’s surrounded by a softer clot. Every effort has been made to extract it, but it is just too close to Don’s brain stem, and the risk of removing all of it outweighs the chance of a piece breaking loose during surgery and damaging his brain stem. We could safely remove only the surrounding softer clot. Most of the clot has been removed, but there is still a part that will eventually have to be dealt with.”
I had no idea what a brain stem was or what its function was. “I know my husband,” I pleaded with him. “Go back in. No matter what it takes. He wouldn’t want anything left; he’d go for broke.” My inexperienced words fell upon deaf ears.
The next few hours felt like slow motion, a nightmare I couldn’t wake up from. I didn’t realize then that this was the beginning of my new life, a life that belonged in some obscure novel, not my reality. Not my life. Someone else’s life. No, this couldn’t possibly be me, be us.
My face was close to Don’s as he opened his eyes. He was looking at me. He smiled. He knew me. The first thing he said was, “I love you.”
Little by little, he regained consciousness, and during those late hours, I slowly started to believe all would be OK. The room was quiet, the lights dimmed. The doctor came in and explained the complication to Don. His utterly disappointed look of despair that the entire clot hadn’t been removed was heartbreaking. I stayed with him quietly for a few hours, not knowing what to say. We both knew there was still something bad in his head. Once again, time was ticking, ticking, ticking.
Finally, Don broke the silence, “Kathi, you’ve got to go home and get some sleep.”
“No way,” I said. “I can’t bear to leave you.”
“Kathi, you need your sleep,” he insisted. “We’ll deal with this tomorrow. Look in my medicine cabinet. I have some Ambien. Take one and get a good night’s sleep.”
“Please, God, save him,” I prayed as tears streamed down my face. “Please, God, don’t take him from me. I need more time with him.”
Just as Don had said, the Ambien sat on a shelf in his medicine cabinet. I stared at the bottle, realizing I had taken sleeping pills only for long airplane flights. Wonderful long flights meant an exciting place at the other end: Europe, Malaysia, Africa, South America. The list went on and on. Don had shown me the world. This time, I had no idea what world waited for me at the other end of sleep.
I looked around his small bathroom, touched the cool tile in front of his sink, and imagined him standing there only a few hours earlier. Who would ever imagine a man like Don Koll would be satisfied with a tiny old yellow-tiled bathroom with barely enough room to turn around in? It brought my thoughts back to the quietly charismatic man he really was. A man full of life without pretense. An ego big enough to bring illustrious success without making anyone feel like they were less. A true friend who always put family and so many others before himself and made everyone, be it a millionaire or a guy in the grocery store, feel like they were on his level. The man who let me be me. I grew up with self-confidence, but years of a not-so-perfect marriage with my first husband shattered that in many ways. When I met Don, I felt like a little bird in a cage. He opened that cage and let me fly.
I swallowed a pill using Don’s water glass, which made me feel close to him. I quickly got ready for bed and, staring at Don’s neatly made side, crawled under the sheets. I touched his pillow and cried myself to sleep, hoping the pill would take me out of my misery and into a few hours of emotionless rest.
I don’t think I had been asleep for an hour when the piercing ring of the phone next to me pulled me out of the Ambien abyss. I’m not sure how long it rang; I had a hard time waking to answer it. There was a man’s voice on the other end. “Is this Mrs. Koll?”
“Yes,” I said in a fog.
“I’m so sorry to tell you this, but your husband has taken a turn for the worse. You need to get to the hospital as soon as possible.”
“Is he alive?”
“Yes,” he said. “But it’s important you get here soon.”
“Oh my God. No.” I called my son, Kevin, right away.
“Mom, I’ll meet you there. I’ll be there, Mom.”
I could hardly stand up from the effects of the sleeping pill. I couldn’t think straight. I fell against the wall as I tried to pull on my jeans. I couldn’t find my car keys and had no time to look for them. Sitting on the shelf behind our bed were the keys to Don’s new little Bentley. I grabbed them and ran down the stairs to the garage. It had been a huge decision for him to buy it, because he felt driving a Bentley looked too p
retentious, but he loved the car. I said, “Come on, Don. If you want it, buy it. What do you care what people think?” I had never driven the car and didn’t realize the power it had. The thought of what I did brings chills to me now, but I wasn’t thinking about anything but getting to the hospital. Time was once again ticking, ticking, ticking.
I sped down the Pacific Coast Highway in the middle of the night and reached the hospital in record time. The back entrance was locked, and through sheer adrenaline, I pried it open and ran down the hall where Kevin was waiting for me. I fell into his arms sobbing. The doctor appeared within seconds.
“We have to go back in. We believe Don has had another stroke. We need to get the rest of the clot.”
Kevin and I sat speechless in the waiting room, waiting to hear Don’s fate. The doctor finally appeared in the doorway and asked me to follow him into a small room where the X-ray of Don’s brain was hanging in front of a light. He was encouraged that there was no clot.
Yes, it was gone, but we soon discovered that as it exited his brain through his blood stream, it damaged his brain stem.
We were now on the back side of the fence, the back side of the mountain, but it wasn’t the bottom of the sea.
I distinctly remember Don saying to me one day, “You know, Kathi, there are only three things in life that really matter: food, water, and love. Food and water enable one to exist. Love enables one to live.” I would imagine his buddies would be surprised by the simplicity of these words, but then again, maybe not. His close friends understood the depth of his feelings; only the outer fringe would have been surprised.
Those words resonated with me more than he knew at the time, and the strength of them was tucked away deep in my thoughts, to reappear after Don was ill.
Before Don, I never knew anyone who had suffered a stroke. In some ways, maybe that was a good thing, because I innocently felt if I did all I could and helped Don keep up his enthusiasm, we’d be back to our normal life within six months. I never knew anyone disabled, either. I had an unfair amount of experience with death and dying in my family, but I had no idea what someone disabled and possibly doomed to a quadriplegic life would possibly be like. Those thoughts didn’t even enter my mind then, because I thought Don would be “fixed” within six months, and this nightmare would be behind us.
I couldn’t bear to leave Don alone at the hospital in those first few weeks, but the lack of sleep was taking a toll on me. One of Don’s doctors, Dr. Michael Brant-Zawadzki, took me aside and said, “Kathi, you need some rest. Life is now going to be a marathon, not a sprint.”
I had no idea what he was talking about. The days and nights rolled into one.
The fear in Don’s eyes when he first opened them is still burned into my memory. He didn’t need to move or show expression; everything came through his eyes. They were piercing, frightened, helpless, and hopeless. I could feel him, sense him, and hear him. Not through voice or touch—only by the look in his eyes.
It’s hard to explain the true pain of it all or how either of us survived, but there was constant hope that threatened to be toppled by many disappointments. I counted the days and the minutes for any kind of movement to return. The first eighteen hours, I did not take my eyes off his toes. “You can do it, Don. Think of your days at Stanford when you were on the swim team, kicking your legs as hard as you could while gliding across the pool. Think of pulling back on the throttle of the F-86F fighter jet you flew in the Air Force. Think hard. Imagine you’re in your Porsche pushing down on the pedal to change gears. Think. Imagine. You can do it. Think. Imagine.” He tried so hard. Once again, I could see the determination in his eyes. The bewitching time was upon us and nothing.
The same problems affecting his movement were also affecting his breathing. He was put onto a ventilator with the hopes his diaphragm would regain its function within days. “Don, you can breathe. Think. Imagine. You can do it. Remember when you’d hold your breath while skiing? When you reached the bottom of the run, you gasped for breath, filling your lungs with air as if it was your first. Remember? You can do it again. It’s a memory, you know. Do it again. Please. You can do it.”
It was exhausting waiting for Don to move a toe, a finger, give an expression on his face, breathe. Every little goal reached was like climbing Mt. Everest, only the summit was always so very far away, and time was ticking, ticking, ticking away. Every day that passed was a slow realization that life would never be the same.
My heart was full of love and so full of pain. I couldn’t stop crying every time I left his room, but I couldn’t let him see me that way. I had to be brave for him; I had to give him hope, and the only way to do that was for him to derive strength from my positive attitude. Surely he would think he was going to get better if he saw the positive and unwavering optimism I had for him.
I was so scared, sad, confused, and helpless, but I was determined to keep it all secret. He couldn’t know any of it. I sat close to him, holding his hand, passing my hand gently over his forehead. I kissed his cheeks, his lips, and gently rested my face against his. All the while, my heart filled with sadness, which I knew his was feeling, too. I could see it in his eyes. I could see it when I wiped away his tears. My Rock of Gibraltar was silently crying, and it broke my heart. How could I make him happy? How could I give him strength? I started to realize that this would be my job. I would be in charge, but never let him know he wasn’t. Till the day he died, he was to be in charge and take care of me, which he did so many times with only the strength of his eyes.
My friend Alexandre de Borchgrave had recently written a book of poetry about love and life in honor of 9/11. I spotted it on the bookshelf one morning and grabbed it as I was scurrying off to the hospital, thinking it might be soothing for Don to listen to me read it to him. I quickly learned how much my reading meant to him. When the lights dimmed late at night in the ICU, I read it to him, and right before I left, I whispered a special memory we shared into his ear. Quietly I’d ask him to think of that memory as he went to sleep, and I would do the same. In a life that lost all privacy, these were our own special secrets never to be shared. Every night another memory took us away from our bleak reality and back into a world of happiness.
5
LOCKED IN
“My diving bell becomes less oppressive, and my mind takes flight like a butterfly.”
—Jean-Dominique Bauby
There’s no better description of our life than the one depicted in the French book-turned-movie The Diving Bell and the Butterfly. When Don first had his stroke, a friend recommended I read the book. The story is about Jean-Dominique Bauby, editor of the French fashion magazine ELLE, who suffered the same type of stroke as Don with the same devastating results, albeit Jean-Dominique never left the hospital. I’m glad I didn’t read it in the beginning. I wasn’t ready to witness the reality I was living.
I finally relented in 2007, two years after Don’s stroke, when the movie came out. I had experimented with all sorts of ways to help Don communicate and thought if I saw the film I’d learn something. I really didn’t know much about the story. If I had known, I might not have gone. My two girls, Jennifer and Brooke, insisted on going with me, knowing I would need tremendous support. The three of us sat together stunned, holding hands and trying to hold back our tears as we watched the story unfolding onscreen. It was my life; it was our family’s life, and it was Don’s life. The similarities were uncanny. I went home with the gift of seeing the story through the patient’s eyes.
As sad and difficult as it was for me to watch, I took away a very, very important lesson. Jean-Dominique couldn’t move, but he was the same man inside. It was the first time I really focused on the fact that the world looked the same from Don’s vantage point. He was looking out as he always had; only now, he looked different to all of us. Don couldn’t move, but he was the same man he had always been with the same intelligence and unwavering optimism for life.
The movie gave me an entirely new w
ay to look at people with disabilities. In the film, Jean’s old friends visited but looked at and treated him as if he was a child or had amnesia. They put their faces close to him and said, “Jean-Dominique, I’m your old friend, Pierre. We went to school together.” Jean peered at this friend, saying to himself, What’s wrong with you, you old fool? Of course I know who you are.
Like Jean-Dominique, Don started his day as he started any other day, and in a matter of seconds, it changed forever. Don awakened from his surgery completely “locked in.” He couldn’t speak, couldn’t move, couldn’t breathe. The touchstone of my life couldn’t do anything other than look at me, and the look in his eyes was one of total fear. For the first time he was looking towards me as his rock. His mind was intact, but that was all, and at that moment, I wondered if that was a good thing or not.
I’m not sure when he first realized his plight or the innermost thoughts going through his mind. I did recently learn that Don used to mouth to the nurses, “You know, this is my bonus life.” He never mouthed that to me. When I heard that, so many raw emotions opened up. I found comfort in knowing from those words that he knew he was supposed to die and was living a life he never expected to have, a bonus few get to enjoy. I find comfort looking back on how much he embraced the opportunity. If he hadn’t, he would have closed his eyes many years earlier. Don made it very clear over and over again that he wanted to live.
Time and time again people asked the hurtful question, “Why didn’t you just pull the plug?” One woman even said to me, “I’d never let my husband live like that.” I probably would have reacted that way, too, if I had not lived through it and come to understand the difference between being brain dead and being the same person without the ability to move. The hurtful conclusion people were alluding to is called murder. It’s the attitude that begs the question, “Why don’t you make your life and his life easier?” Life, unfortunately, can’t always just be a convenience.
