Kick-Ass Kinda Girl

by Kathi Koll

  I called my friend Dr. Horacek, and he recommended that his wife, Chery, and my close friend Nettie Dart go to the meeting the next day with me for support, especially since they had helped me evaluate alternative facilities. I’m not sure I could have done it without them. I was taking a huge step trying to bring Don home, and their emotional help during the meeting was tremendous. I needed “a team” too. The same group was at the long table, but this time I felt stronger and ready for them. Sort of.

  After much negative discussion, I finally said, “This is UCLA, and you’re supposed to be a teaching hospital, right? Instead of fighting me on this, why can’t everyone come together and help me? Maybe this teaching hospital will learn something from our experience.”

  Dr. Shpiner was starting to come around.

  “What are you going to do if the electricity goes out at your house?” Dr. Vespa asked. “Don will only live a short time without his respirator working.”

  “I’ve already thought of that and have bought a backup generator,” I replied coolly and confidently.

  “Does Don realize he probably won’t live long doing this?” he asked. “There are just too many obstacles and possible emergency situations.”

  “Why don’t we all just walk down the hall. We can ask Don what he thinks.”

  Drs. Dobkin, Shpiner, and Vespa followed me into Don’s small cubicle in the ICU. Don listened to all the pros and cons (mostly cons) coming from the doctors.

  “Don,” Dr. Vespa finally really looked at him, “there’s a good chance you’ll die at home if you do this.”

  Without a second of a hesitation Don mouthed, “I want to go home. I understand. I would rather die at home.”

  With that, all three doctors went into action and said they’d help me make it happen. It was forward momentum, and for us, that was a breath of fresh air.

  For months, I had been watching all the medical personnel working with Don very closely. Nurses, respiratory therapists, physical and occupational therapists, speech therapists, care helpers. I knew who I liked, who was good, and most importantly, who Don liked and didn’t like. A number of the nurses and respiratory therapists had jobs outside of UCLA on their days off, so I started approaching the ones I felt would be a good fit with the idea of working at our home on their off days. “Come on, just try it,” I would say. “I promise it won’t be a miserable job, and I won’t be difficult to work for. We have a pool you can relax by on your time off.” Was that ever a naive statement! But it sounded good at the time—I was selling and selling hard.

  I found a wonderful doctor, Dr. Harley Liker, to come on board the first year and help me coordinate with Dr. Shpiner on Don’s care. I was able to put a small team together, and from there it grew. I had no idea how to order medical supplies, equipment, clothes, or any of the other myriad of things I discovered we needed, but together we started making it work. We were the DK Team, and once people signed up, they were committed. Scheduling was overwhelming. Don could never be left alone, so there couldn’t be any gaps on the calendar. With time, my makeshift medical center ran like clockwork, but oh how complicated it was medically and emotionally in the beginning.

  Finally home

  The day, then the hour descended upon us, and there was so much more to do. I was anxious to make it work and couldn’t wait to get Don home; but at the same time, it scared me to death. Lists were being checked, crossed out, and double-checked. Just getting the right hospital bed was a challenge. Who would have thought I needed a bed with a scale? Well, of course I did. Don couldn’t stand on a scale, and taking his weight every day was important. Just getting the huge Stryker bed into the house was a challenge. It took twelve men. The supplies were mind-boggling. The custom wheelchair to fit Don’s unique situation as a quadriplegic, the lift to get him into the chair and/or bed, the standing board, whatever in the world that was, the chucks under him to roll him from side to side when dressing him, the leg compressions, thermometers, syringes, a defibrillator, extra tracheotomy tubes (or trachs) for emergencies, poles to hang IVs…The list went on and on and on.

  Don’s situation meant 24/7 care, and he could never be alone for the rest of his life. This kind of care wasn’t going to be paid for by insurance and didn’t come cheap. Fortunately, Don’s success prior to his stroke made all of the necessary care financially feasible. Right from the outset I told him, “Don, I just want you to know that if we need to spend every last penny you’ve made, it’s OK with me. You made it, and this is the time in your life that you should spend it to give yourself the best life possible.” I could see relief in his smile as he mouthed, “I love you.”

  I stood next to him in the ICU as we waited for all the paperwork to be completed. Don’s patience wore thinner the longer it took. Finally, we were off. Before this, I didn’t know that one could “hire” an ambulance, but over the next several years, we did it hundreds of times. I wondered what Don was thinking as he looked out the back windows of the ambulance at so many familiar sights. Trees, homes, and buildings he most likely always took for granted. Now he was seeing them with another chance at life, and the dream of going home becoming a reality. As we drove into our driveway for the first time after so many long and emotional months, I couldn’t help but feel a bit proud that I was making it happen. So many months, so many serious health scares, so many people saying, “He’ll never go home again,” and “He won’t live long,” and here we were.

  Dr. Shpiner was there to make sure all went smoothly, as he did for the rest of Don’s life, along with Dr. Liker. About an hour later, Dr. Dobkin arrived. He sat in the living room with me for quite a while trying to calm any fear I had. “Kathi,” he said earnestly, “make sure Don doesn’t just live to exist. Make sure he exists to live.” It became my theme for the kind of life I would help Don have for the rest of his life. This was our new normal, and I was determined to make both our lives as normal as possible.

  Part of looking normal was making sure our room didn’t look like a hospital, so I insisted that all supplies needed close to Don be put into our beautiful antique side tables. Someone recommended that I roll up our area rug and work on the hardwood floor so that spills would be easy to mop up. “No,” I insisted. “Everyone needs to be a little more careful. We can always have the carpet cleaned, but our room and life are going to be as normal as possible.”

  Hospital Central was in the guest bedroom next to our room. We stored some often-needed supplies there, and the medical crew made it their headquarters. The bulk of the supplies took over our garage. On top of our home overflowing with medical supplies, the laundry never stopped, which was only made worse because I had so little time to do it. There was so much I had to buy an additional washer and dryer.

  I still believed Don would be back to normal in six months and off the respirator in a week or so. I rearranged our third bedroom as my own temporary living space, never thinking I would stay with Don in our home ICU, but when I mentioned it, the disappointment on his face was too much for me to take. There went my little space of privacy, but I loved the fact he never had a second thought about me being right there with him. I couldn’t bear being far from him anyway. It was just another part of our new normal.

  I moved our king-sized bed into storage, but I kept the beautiful fabric-covered headboard behind Don’s hospital bed. I had to improvise and used the blow-up mattress we had for the grandkids. I ended up sleeping on it for nine months—I optimistically thought everything would get back to the way it was, so why buy another bed? Every night, Don practically barked at the nurses to help get my bed blown up. He was always trying, in the only way he could, to take care of me.

  Going to sleep that first night Don came home was a bit awkward. I always slept in a nightgown, but I was in a room with complete strangers, one of whom was a man. I couldn’t wear a nightgown in front of these people. In all the careful preparations made to bring Don home, I had overlooked that logistic. Surely I had some forgotten set of pajamas in my b
ottom drawer. Negative. I found my old grey sweatshirt and sweatpants instead. I also came across some of the provocative little teddies I’d wear with him. In the midst of the overcrowded hubbub that had become our bedroom, I gave myself a private moment to cry as I wondered if I would ever wear them with him again.

  Putting sheets on the blow-up bed was like living a scene from a Chaplin film, but I didn’t think it was funny. I’d wrangle them around one corner, and they would slide off as soon as I moved on to the next. I couldn’t let that get in the way of the elation I felt being back in my own bedroom with the man I loved, so I went into the garage and got my sleeping bag. I could hardly believe that after months without Don in our bedroom, I was finally sleeping with him again—albeit on a blow-up mattress, in a sleeping bag, wearing sweats, with strangers watching me. It was all so weird and unreal, but I was in dreamland having Don home, right next to me with my arm around him.

  Just one short month later, we all got an amazing little dose of joy—something Jennifer has always seemed to bring in the most difficult times. I remember the birth of each of my grandchildren just as vividly as the births of each of my own children. In my day, not many of us knew ahead of time what sex the baby was going to be, but nowadays, it’s only a mystery if you enjoy the surprise like my daughter Jennifer. Her first baby—and my first grandchild—was a boy named Flynn, and eighteen months later he was joined by “Little Kathi.” Her birth came only a few months after Don’s debilitating stroke. The entire family was looking forward to her arrival with more excitement than usual. A day to escape the misery at home and welcome a new life into our family.

  Don and baby Kathi

  Before Don’s stroke, Jennifer had stopped by the house holding an envelope.

  “Mom, the doctor just gave me the report showing the sex of my baby. It’s in this envelope. I just don’t think I can have it at my home without peeking inside. Would you take it and store it away for me?” She bolted out of the house just as quickly as she’d popped the question. I stood in the kitchen staring at the envelope mustering up all my strength to not look inside.

  What made her think I could resist? I thought. While I was staring at it, I heard Don coming in the front gate from work. “What are you looking at, Kathi?”

  “Well, this envelope contains the sex of Jennifer and Rick’s baby.”

  With lightning speed he grabbed the envelope out of my hands. “I think I’d better take this and hide it away before you cave and look inside.”

  That was that. The secret would be safe with him.

  Exactly four months after the stroke, the baby was due to arrive. I was so excited to greet my new little grandbaby into this world that I awoke early. Don was already awake and staring at me. The minute I caught his eye he gave me a big smile. He knew the day of the C-section had finally arrived, and the thought of a precious little baby would bring joy to all of us.

  I dressed quickly and raced to the hospital. The entire family arrived full of anticipation and excitement. We all had our guesses of what the baby would be. I took my place in the delivery room alongside my son-in-law, Rick, as I had done for Flynn’s birth. Within minutes I heard the doctor announce, “You have a beautiful little baby girl.” Rick headed out to the waiting room to tell everyone, with me in tow.

  I arrived home in the early afternoon, anxious to share the news with Don. “So,” I asked, “what do you think the baby is?”

  “I know what it is,” he mouthed with a sly little smile.

  “Well then, what it is?”

  “A girl,” he quickly answered.

  “How do you know?”

  “I peeked. I’ve known all along.”

  My jaw hit the ground. He was the guardian of the secret and had opened the envelope within minutes of taking it from me. I was glad he did. I think it gave him a lot of pleasure knowing we didn’t know that he knew as he listened to us speculate month after month.

  I couldn’t help but think, Good for Don. Here he is paralyzed and on a respirator, but he still has a great sense of humor.

  Of all Don’s legacies, the one that touches my heart the most is how he influenced the grandchildren. They spent their formative years with “Grandpa in the Wheelchair,” which has given them a level of comfort and familiarity around disability that many children their age will never experience. They’ll grow up with the opportunity to share that empathy with others.

  8

  THE TEST

  “You may have to fight a battle more than once to win it.”

  —Margaret Thatcher

  In some ways, the first eighteen months were the most difficult. The adjustment period of our new life was the most challenging I’ve ever experienced. My home was a small world within itself. It didn’t take me long to respect the staff who cared for Don. They loved him and it showed. The saddest challenge was Don’s fear I’d leave him, and boy did he put me to the test. I learned later that testing people was innate to him. I even witnessed it firsthand shortly after he had his stroke, when a business associate unsuccessfully tried to take over his company.

  Sometimes it takes something catastrophic to make a change in one’s life. Yes, my life changed when Don had his stroke, but that was his test. Mine came a bit later and practically put me over the edge. I had felt depression before, like a wounded bird looking up at a wobbly branch after a gust of wind. How could I not have, with everything that I had already been through?

  I felt that unbearable pain and fragility at Don’s bedside. I had survived so many hardships, but this new kind of pain was uncontrollable.

  Within the first four or five months of Don’s stroke, he asked me out of the blue if I’d like to have a boyfriend. I was shocked and hurt by the question, which put his feelings to rest. “Are you kidding, Don?” I sobbed. “How could you possibly ask me that? What would put that question in your mind?”

  I wondered if he was being unselfish or testing my loyalty. I must admit that during the first eighteen months after his illness, I was missing a physical life more than I ever thought possible. I didn’t share these feelings with Don, other than to tell him that the smell of him still sent me into orbit. It was true, and I thought sharing this with him would make him feel good about himself. It did make him smile. The loss of intimacy was driving me crazy, but time brought on a numbness that was a welcomed respite. I guess the expression “If you don’t use it, you lose it” came true, but in my case, it was a God-given present. The thought of being unfaithful to Don didn’t enter my thoughts for a moment, but fantasies of him were what helped me carry on as I closed my eyes for the few precious hours of sleep between awakening to help turn him or an alarm going off from one of his machines.

  After 9 months of sleeping on a blow-up mattress I graduated to a hospital bed. Weird as it seems to picture two hospital beds pushed together, we had some wonderful evenings. Someone told me that laughter was an important ingredient to wellness, so I purchased a DVD of Robin Williams. Don was loving every minute of the show. I could hear his silent laughter. Once the show was over, I helped ready him for bed. I crawled under my sheets with my bed pushed next to his and stretched my arm across his chest, burying my hand behind his neck—a habit no hospital bed could break. I cuddled up to him as much as possible, knowing if the beds moved slightly I’d fall between the crack; but as I closed my eyes, I could feel only the closeness of his body, his illness a million miles away. We had spent the evening laughing, and now we were in our own little unconventional dream world.

  I awakened early as usual and forced myself to quickly get out of bed. If I stayed too long in my little cocoon, I’d start thinking about too many things that would turn my few blissful hours of sleep to sadness. Even now, if I lie in bed too long, my thoughts get the better of me, and the shadow of a sad cloud can freeze me from moving forward. The day started like all the rest but quickly turned very dark. Don was angry with me. This had happened before, and I realized that even though he had been happy when he went to sl
eep, he had 24/7 to think, think, think, and that could take him a million miles away. He thought about every second of his life, and he now had the time to do so.

  This particular morning, he was unusually agitated with me. I couldn’t imagine why. We’d had a fun evening the night before. He was happy; I was happy. We had only gone to sleep, albeit awakened for medical reasons a few times within the early-morning hours. Now he was looking at me with deep disdain.

  “Don, are you upset?” I asked.

  “Yes,” he mouthed.

  “Are you upset with me? Did I do something wrong?”

  “Yes.”

  “I only went to sleep. I helped you through the night. What could I have possibly done to upset you?”

  “I saw you,” he mouthed. “I saw you get in that black car with that guy in our front courtyard. I saw that same guy at the restaurant at another table waiting for you.”

  “Why are you saying this to me, Don?” This was a nightmare I never imagined. He was breaking my heart. It was all untrue, but he was adamant and impossible to reason with. The hurt I was feeling was so far beyond anything I could ever explain. I had done nothing. If I had, I would have felt better—I would have been failing at some kind of a cover-up for unfaithfulness; but the reality was that these accusations had come out of nowhere.

  He wouldn’t let up. I was sobbing so hard I could feel myself gasping for breath. He showed no sympathy for my tears. I was giving my every living moment to this man, the love of my life, who had just turned on me, and why?

  “Why, Don?” I questioned. “Where is this coming from?” I could barely speak. “What proof do you have, Don?”

  “I was standing in the entrance hall next to the front door and watched you leave with him,” he mouthed.

  “Don, that’s impossible; you were having a nightmare. Don, you can’t stand.”

  He stared at me for a very long time. I felt the ice of his feelings running through my body. His piercing look made me crumble, and the tears on my face were finding their way down my neck.