Purpose//

When My Husband Suffered from a Stroke, I Thought My Entire World Had Fallen Apart

Turns out, a new life was just beginning.

Photo Taken In Taipei, Taiwan
Photo Taken In Taipei, Taiwan

October 27, 2005—the day that changed everything. The peak of the mountain—or was it the bottom of the sea? I had two lives with Don, and this day was the dividing line.

Every moment of that day is etched into my memory, starting with waking up in Don’s arms. We had a habit of sleeping nose to nose with my leg wrapped around him, like two pieces of a puzzle never to be separated. He slowly started kissing me, distracting me from my scheduled appointment with the subcontractors I was about to meet but quickly forgot. It was a way we started many mornings, but this one wasn’t like others. I distinctly remember thinking at the time that something was really different. What was it?

Our lovemaking had always been as good as my imagination could take me, but this morning was special. It was better than I could ever possibly imagine. It wasn’t the mechanics; it was something much more. Every nerve in my body felt completely loved. I didn’t want it to ever end. Life couldn’t be this good. How could I be this happy? Feel so in love? As we quietly rested in one another’s arms, I glanced out the window and spotted a boat cruising by. The early morning light on the bay sparkled through our partially opened blinds, and I could hear the soft sounds of seagulls in the distance. My thoughts drifted to how ideal my life truly was. I didn’t want the moment to pass, but true to form, Don sprang up and was ready to get on with his day.

Whether or not the housekeeper was coming, our normal routine was to make our bed together. This was Don’s habit, probably starting with his prep school days at Harvard Military School where, as a Prefect in charge of younger classmates, he always won the prize for best-kept dorm room. The teachers didn’t know his room was merely a “set.” He found a shed behind the school where he convinced his classmates to “keep their sh*t” so their room always looked perfect. Those early days instilled in him an unbreakable habit of beginning the day with a perfectly made bed. We actually had fun standing across from each other and taunting one another about whose side looked better or who could finish faster.

Over a breakfast of scrambled eggs, I reminded Don that we were meeting the contractor next door to start remodeling the home we had recently purchased. I waited patiently while Don read the paper before I brought up a few remodeling questions. Originally when buying the house, Don’s intention was to tear it down and build something new. Normally I would have loved that idea, but this home was built in 1927 and had an impossible-to-replace uniqueness. We had agreed that we would do some minor changes, live in it for a year, and then decide to keep it or scrap it. I secretly felt that that was Don’s idea of quieting me down and during that year he’d slowly work me over with new house plans. Knowing this was in the back of his mind, I figured he’d be conservative on some of the remodeling decisions. I wanted this to be a fun experience for both of us, so I said slyly, “Don, can you just say yes?”

“What do you mean, Kathi?” I wasn’t asking with the intention of taking advantage of him, but I didn’t want us to start out bickering over little things like cabinet knobs.

“Please just say yes.” OK, I admit, I sounded like a little girl.

“Go next door while I finish the paper,” he said, ignoring my pleas. “I’ll do the dishes and meet you in twenty minutes.” Obviously he just wanted to finish reading without listening to my chatter, and the dishes were a small price to pay.

I met the team upstairs in what was to be our new master bedroom. It was long and narrow, and it was closer to the bay than most homes along the strip because it was built before the city setback rules. With windows on three sides, the view was unobstructed and gave the feeling of perpetually living on a boat. The carpet had already been pulled up, and the guys were eager to get started. All of a sudden, I heard the front door fling open and the sound of Don running up the wooden stairs. He burst into our room, all energy and enthusiasm. After shaking hands with the men, he picked up a hammer and threw it into the wall. “It’s my tradition when starting a new home,” he explained with a broad smile in response to the contractors’ startled looks. “It’s the same thing I’ve always done ever since building my first home in the early ’60s with my cousin, Kenny Koll. I even did it in the custom home I built for my friend The Duke—that’s John Wayne.”

There was a moment of stunned silence.

“Well, I’ve got to get to the office. You guys work with Kathi.” He looked toward me with a twinkle in his eyes. “And by the way, yes.”

“What does yes mean?” one of the guys asked imitating his tone. “She knows,” Don replied, never taking his eyes off mine. That bittersweet morning was the last time I saw Don as the man.

I knew on “the front side of the fence.” Don and I had planned an intimate dinner party for that evening at our home in Beverly Hills with our friends Susie Egans and the late, great Jerry Weintraub, the famous Hollywood producer. Jerry’s list of interesting friends could fill a book, and we loved that our names were among those he held dearest. Don first met Jerry years earlier when they were amongst the first members to serve as President Reagan’s presidential appointees to the Board of Trustees for The Kennedy Center in Washington, DC. They came from very different worlds, but bonded through mutual admiration for one another and a similar zest for life. We had recently run into Jerry, and he and Don talked about how fun it would be to rekindle their friendship. This was to be their reunion dinner and the path to a new friendship between Susie and me. Secretly, I had hoped we’d receive a last-minute call from Jerry pleading for us to include his pals George Clooney and Brad Pitt. Sadly, I was the one making the last-minute call.

I left Newport early to prepare our home in Beverly Hills for our little party. Traffic on the 405 between Newport Beach and Los Angeles was backing up, so I called Don to suggest leaving his office a little early to avoid the gridlock. Within minutes, he called me back and said, “I think you better call Jerry and cancel tonight.” Don was the last one to ever cancel an engagement at the last minute, unless there was a darn good reason.

“Why?” I asked, more surprised than concerned at that point.

“I’m not feeling well,” he said. “I’m feeling kind of punk.” We had been in Scotland a few weeks earlier, and he hadn’t felt well on the trip. He thought it was the flu and just couldn’t seem to kick it.

“What are your symptoms?”

“Half of my face feels numb,” he said. “My balance is off, and I’ve been slurring some words.”

My heart sank, and my panic spiked. “Don, do you think you’re having a stroke?” He said he didn’t know but was about to leave for the hospital with his son-in-law.

A stroke had always been Don’s biggest fear. Both his father and sister had died from them during their fifties, and Don battled the aching dread he would succumb to the same fate. He visited his doctor regularly, took prescribed medications, exercised with a trainer most mornings, and did everything he thought would help to avoid what he felt would one day be his demise. Sure enough, his actions and attention to health helped him live more than two decades longer than his father and sister. We often talked about the difference it made in our lives to lose family so young. We had to become stronger because they were no longer there for us to lean on.

He stayed on the phone with me while I raced off the freeway to turn around and head back south. He sounded OK, and as he spoke, I kept thinking this had to be a false alarm. He’d be fine. He was just being overly cautious. If there were a problem, surely everything would be OK because he was getting to the hospital within the cru- cial first three hours. He said he’d call me as soon as he registered, knowing it would be tough for me to get there beforehand with traffic. What normally could be a two-hour drive at rush hour took me only forty-five minutes. I’m a fast driver, but this time I broke all the rules—not only speeding, but also taking the carpool lane alone. Those forty-five minutes seemed like hours. I was so scared I wouldn’t get to him in time for whatever was going to happen.

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 backyard. 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 dispair 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 charis- matic 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 pretentious, 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.

Excerpted Kick-Ass Kinda Girl: A Memoir of Life, Love and Caregiving with permission Copyright © 2018 by Kathi Koll 

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