by Kathi Koll
When Don awakened, I stroked his forehead with my hand, leaned over, and kissed his cheek. I kissed his lips as I always did. He kissed me back. I could feel his pain, his fear.
It was a story I only saw in the movies. Not a story of normal people like us.
In the cubicle next to Don at UCLA was a beautiful young Swiss girl who was in a coma. My thoughts turned to her often, especially in those first months of recovery as life seemed so unreal. The actor Robert Wagner and his wife, actress Jill St. John, visited her regularly because she was taking care of their horses at the time of her accident. She left their barn with one of the horses, and it came back without her. She was found unconscious on the side of the road in a canyon I grew up in riding horses as a child. We knew RJ and Jill casually, and they stopped by to see me and give encouragement to us as they passed by our little section on their way to see this young girl. They were incredible with her and took care of her as if she were their child. Her parents arrived from Switzerland not speaking much English. I sat in the waiting room with them hours upon hours. My heart bled for this mother and father in a strange country with a beautiful young girl barely alive and in a deep coma.
“Would you like to meet her?” they asked in their best English.
“Yes, I am honored that you are asking me.” I took them to Don’s bedside first and shared our story in my broken French and the little bit of English they could understand. “This is my husband, Don.” I had told him all about their beautiful daughter, so he understood who they were and their unquestionable compassion and hope. He used every bit of energy to give them a slight smile. It was all he could do to show his respect.
They guided me into their daughter’s small room. The walls were covered with family photos and pictures of her favorite horses, music they knew she liked playing quietly in the background. They gestured to step closer so they could introduce her to me. She loved the small canyon where her accident happened, and since I’d grown up there, her parents felt it would make her feel closer to me.
“I grew up in a very special little spot in Los Angeles called Sullivan Canyon, where I rode horses and she had her accident. As a child, I thought I was the oddball of my friends. They had side-walks in front of their homes, and I lived in a canyon with a stream, hiking trails, and horses. Of course it was just the opposite—my friends envied me for living in ‘the country.’” I squeezed her hand and whispered into her ear. “I used to ride up the trails beyond the hiking paths of Sullivan Canyon, over the mountain and deep into Rustic Canyon with my friend Cecily Waycott. We would put our cans of soft drinks into the stream to stay cold as we rode on up the canyon before riding back to sit by the bank to eat our lunch. I’ll cherish those idle days of summer, riding my horse everyday.” If she could hear me, maybe she could relate to this, and maybe the magical descriptions might take her into a cloud of happiness. I tried to think of anything I could do to make the afternoon somewhat normal, which was anything but. She was an incredibly beautiful young girl who had been robbed of her life.
6
OUR NEW NORMAL
“Normality is a paved road: It’s comfortable to walk, but no flowers grow on it.”
—Vincent van Gogh
When am I going to wake up?” I was crying, sweating, screaming. I couldn’t breathe. “I want to wake up. I want out of this nightmare. I’m sick of people saying, ‘You’re so strong. I could never be so strong.’ I don’t want to be strong. I don’t want this to happen to me. What do you think I’m going to do, people? What choice do I have?”
I felt like I was in a nightmare, but I couldn’t escape because I was awake in my new reality. I had no idea what that meant or what lay ahead for me, but I was awake and couldn’t go back to the life I knew.
A nurse came in and gently whispered into my ear that a priest was outside. My God, a priest is here for Don’s last rites, I thought.
“Is he dying?” I asked. The doctor had said he wouldn’t live through the night, and when he did, the doctor said he wouldn’t live long, but I was optimistic. “It must be the end,” I said to the nurse.
She squeezed my hand and said, “Monsignor Baird would like to visit Don.”
Monsignor Baird walked in, wrapped his arms around me, then gently put his hand on Don’s shoulder. His words were words of comfort, not the last rites. Comforting thoughts before praying by Don’s bedside. Don’s eyes never left the priest, and I could see in them a feeling of comfort, of safety. Don wasn’t an overly religious person, but that night, I saw him embrace pure spirituality for the first time.
At first, Don and I could only communicate through the blinking of his eyes. “Don, give me one blink for yes and two blinks for no. Don, let’s look at this like a sporting event. We’re on the same team, and I mean to win. Give me one blink if you’re in or two blinks if you don’t want to play the game.” I’ve never been keen on calling an illness a war, and I felt better thinking we were going into a competition. He closed his eyes tightly and then opened them once with determination. I knew he was in and wanted to live. For the rest of his life, the doctors would question him regularly and ask if he wanted to be resuscitated in case of an emergency. He always indicated yes. Don wanted to live, and live he did.
As days turned into nights and nights turned into days, I started to realize that things weren’t going to change as rapidly as I had thought. Don’s doctor took me aside and said, “Kathi, you need to take care of yourself, or you’re going to burn out.” I needed sleep, but the thought of leaving Don alone in a hospital full of strangers was frightening. I came up with the idea of having family and friends spend each night with Don so he wouldn’t be alone. The answer to my request was overwhelming. Family and friends from junior high school, college, and business signed up and rotated sleeping next to Don on a small cot night after night in the ICU. The comfort it brought to both of us—especially Don—was indescribable. Even Don’s college friend Ron Tomsic took shifts, despite having just endured a double knee replacement. He brought bags of ice to put on his knees while lying on the cot next to Don. It gave him a sense of security and kept him from feeling alone. Throughout the years, he had given so selflessly to others, it was inspiring to see him receive that support from others now. It was a show of love towards him he never knew existed.
As days and then weeks marched on, Don’s face regained movement. From the neck up he was starting to look like his handsome self again and could mouth words. He talked like he always did, but without a voice; it became a frustration that haunted us the rest of his life. I soon learned that many words are formed the same way, but the sounds are different. He’d get so incredibly frustrated if I couldn’t read his lips. There were many attempts to use cutting-edge tech like eye-gaze technology, and even doctors from other hospitals who truly believed they could help Don speak again gave their best efforts; but it just wasn’t in the cards for us. We tried as many suggestions as seemed reasonable for Don’s condition, but in the end, we had our own language and communication that we made work for us. I devised a spelling board to use when it was impossible to understand him solely through lip reading. He hated it, but boy oh boy, when he wanted himself understood, he’d use the board for as long as it took. The board was numbered down the left side, and each number had a line with letters of the alphabet:
1 A B C D
2 E F G H
3 I J K L
4 M N O P
5 Q R S T
6 U V W
7 X Y Z
I asked him to mouth which line the first letter of the word was on. Once we got the line, I pointed to letters one at a time, and he’d mouth the one he needed. When I choose the correct letter, I wrote it on a white board for him to see, and we would move on to the next letter. A sentence could sometimes take thirty minutes. One day, Tom Foster, his friend and attorney of many years, was at our home. Don was intent on Tom understanding every thought he was conveying. Tom left dripping in sweat and said, “Kathi, how do you do it?�
�� It was nice to know someone else understood the frustration and stamina it took. Not only was Don determined to live, he was in charge of his life and his ideas. His thoughts were his and his alone. I was attracted to his strength from the outset, but now his strength was more impressive than ever.
Way before Don’s stroke, I was sitting next to our friend Mike Niven at a dinner party. He said to me, “You know, Kathi, Don is one of the few guys I can describe as a man, not a boy, and there are very few of them.” He was so right. He was my John Wayne, my knight in shining armor, the man on the white horse.
Days turned into weeks. There were slight improvements, but few, and time wasn’t on our side. Each day that Don didn’t regain movement was closer to the reality that he never would.
Our story quickly made news in our community. All sorts of stories were flying around, and word spread quickly from coast to coast. At first, no one knew what kind of fight Don was really up against both physically and emotionally, but support came rolling in as soon as everyone knew. I even received a lovely orchid and letter from Prince Charles. Among the hundreds of emails and letters I received were two separate, very heartfelt ones from President and Mrs. Bush. They couldn’t believe how great Don had looked and acted so recently, and now his life was hanging by a thread. Of all the letters from the people we felt so fortunate to have connected with, one that has always stood out to me was from a total stranger. A man wrote to us saying that Don had helped him change his tire on the side of the road one night. He said that he never expected a man like Don to stop for a man like him, but that was the striking thing about Don: He made everyone feel important because he treated every person like they were special. It was so touching to see the breadth of people he affected with his kindness and generosity.
Catherine Ross, a local doctor, heard what happened and invited me to come to her home to meet her and her husband. He had suffered an injury when he was thrown off his horse and had become a quadriplegic, although he was not on a respirator. That was the day reality hit me like a ton of bricks. My entire family—Jennifer, Kevin, Brooke, and brother Don—accompanied me to their home about forty-five minutes from ours.
“Oh my God, there’s a ramp.” The pit that had been growing in my stomach during the drive to the Ross home solidified and sank. Jennifer, Kevin, Brooke, and my brother Don and I walked up to the door and rang the bell. A man in a wheelchair answered. I had never met anyone like him before. His wife, Catherine, stood beside him, and together they welcomed us into their home. He wasn’t on a respirator, so he could talk, a luxury Don never regained. He operated his wheelchair by blowing through a straw. Graciously, he gave us a tour of their home and explained how he lived day in and day out.
He started by showing us the Hoyer lift that lifted him from his chair to his bed, then took us to see how his van was outfitted with a hydraulic lift to place him and his wheelchair next to the driver. I was overwhelmed with gratitude that complete strangers reached out to help, but at the same time, I did everything I could to not cry as he showed us how he turned on his TV and lights. This couldn’t be happening to me. To us. Please, God, help me, I silently screamed. I didn’t see how I could do this, and I didn’t want to.
I returned to the hospital shaken from the experience and nervous to talk to Don. He knew where I was going, but I felt certain he wasn’t ready to hear the grim details. I feared he’d lose hope. The minute I arrived, he was intent on telling me something. It was obvious he was anxious and determined for me to understand him. I held up the spelling board, and he blinked one letter at a time until I could read his message: You have to get me to UCLA, or I will die.
UCLA was—and probably still is—the number-one stroke center in the country, and I knew Don felt his best chance for any kind of recovery was to be in a major hospital. Arranging for Don to be transferred to the ICU Neurology Unit of the UCLA Ronald Reagan Medical Center within a few days was no small feat. Because the unit was small, we had to wait for a spot to become available, and there was a lot of red tape on both ends. Finally, after almost missing our opportunity when the bed originally intended for Don was filled, we made the slow drive from Newport Beach to UCLA by ambulance when another bed opened up within a few days. Dr. Yince Loh, the Fellow studying under the head of the unit, Dr. Paul Vespa, admitted Don. Over the next three months, I camped out at the hospital. Everyone knew me, and I knew all of the staff. It became my life, and I very quickly grew to understand and respect the incredible dedication of the medical world.
Smiling through his challenge—forever the optimist
Early one Sunday morning after having been in the ICU for a few weeks, one of Don’s main doctors, Dr. Robert Shpiner, called me and asked if I could meet him in the cafeteria. My heart sank. Please no, I thought. Please no more bad news.
I could have asked any number of willing family members or friends to accompany me, but for some reason I felt that I needed to go alone and face whatever he was about to say to me. My gut said it wasn’t good. Dr. Shpiner was sitting at a table towards the back of the room. I took a seat across from him, and he uttered those dreaded words. “Does your husband have all his affairs in order?”
I was shocked at what I was hearing. This was UCLA. This was the place my husband felt confident in. They were going to fix him, save him. Why was Dr. Shpiner saying these dreaded words to me? Following my life-changing discussion with Dr. Shpiner believing Don wouldn’t last long, days rolled into weeks and then into months. Don defied the doctors yet again. He was gathering believers.
I never thought about our next step. I wasn’t counting the days, weeks, or months that we had been at UCLA. Time didn’t seem to exist. One afternoon, Dr. Vespa took me aside and said, “It’s time for Don to move. He’s stable, and we can’t do any more for him. We’re not a convalescent hospital.” I had no idea what to do. He scribbled a few suggestions on a piece of paper and handed it to me.
I was stunned. He wasn’t fixed. Where were we going to go? I called our good friend Dr. Ken Horacek who had been a sounding board to me from the start. He had a few suggestions, but few places take patients on a respirator. Our close friend Jim “Watty” Watson, who had been a source of strength to me and Don, visited one place for me, but afterward he called and said, “No way in hell can DK go there.” I was at my wit’s end. Don had no idea the dilemma we were facing, and I didn’t think it was wise to share it with him.
Two of my best girlfriends, Nettie Dart and Chery Horacek, Dr. Horacek’s wife, volunteered to visit some prospective places with me. There were only two that were willing to accept Don. The three of us climbed into Nettie’s car and took off. The first place was hesitant when they heard Don’s condition. The second was a little more willing and tried to console me by telling me that every afternoon Don would be wheeled into an arts and crafts session that they were sure he’d love. Arts and crafts, I thought, they have to be kidding. My husband, who a mere three months ago was traveling the world and running a successful business, was going to spend the rest of his life watching someone making teepees with Popsicle sticks?
The three of us walked to the parking structure. My girlfriends had their arms around me. I knew they were holding back tears, but I was outright sobbing.
Time was running away from me, and I couldn’t catch it. The hospital was putting pressure on me, and I had absolutely no idea what I was going to do. I was ducking the doctors for fear the subject would come up. I finally sat down next to Don and tenderly shared our dilemma. He looked at me and mouthed, “I want to go home.”
Home? It hadn’t crossed my mind. How in the world could I ever make that happen?
7
THERE’S NO PLACE LIKE HOME
“What counts is not necessarily the size of the dog in the fight—it’s the size of the fight in the dog.”
—Dwight Eisenhower
I would like to move Don home. How could we possibly make that happen?” If Don wanted to be home, I at least wanted to see if it w
as an option.
“I’ll bring it up with the team, but to be frank, I can’t imagine it working,” Don’s doctor told me. I wasn’t sure who “the team” was “Basically, in order for us to release Don home instead of to a facility, our decision will have to be unanimous.”
I must have looked frustrated because his face softened.
“We’ll call a meeting to discuss it with you.”
Dr. Vespa found the idea unlikely and felt he’d be back in the hospital within a week. Dr. Dobkin, who was in charge of Don’s rehab, was a positive, but Don’s main doctor, Dr. Shpiner, also had his doubts. The lack of enthusiasm made me nervous for the meeting, but I was determined to sway them. I walked into a conference room at the appointed time and found about twenty people sitting on either side of what seemed like a very long table. The sight of all these people really shook me up. I wasn’t ready to discuss Don’s situation with so many strangers. I thought I was just meeting with the three doctors, so I felt completely blindsided. As their questions started coming at me like darts—albeit tactful darts—I started to cry. Someone slid a box of tissue in front of me, but I couldn’t stop crying. The additional people were actually there to discuss all sorts of care for Don and had great intentions, but I just wasn’t emotionally prepared for that conversation. It was evident that we wouldn’t be able to get done what we needed to, so the meeting was canceled and rescheduled for the next day.