Kick-Ass Kinda Girl

by Kathi Koll

  How in the world could this be happening to me? I silently begged, Please, God. God, stop this, I can’t bear it. What have I done to deserve this? The memory of people saying, “God only gives you what you can bear,” was repeating over and over in my mind. I hate that expression. If there is a God, and God is good, he wouldn’t do such a thing. I never want to hear that expression again, and I’ll never say it to anyone.

  I had no idea what was going on in Don’s mind. I guess he was thinking what any man would be thinking who felt like he was “less of the man” than he was. I could see he’d had a nightmare that was so realistic he believed it was true, but was he starting to understand this, or was he convinced I had been unfaithful? I was devastated and could only hope he was questioning his thoughts and coming to the conclusion that it had been a nightmare. I could see that it had felt so real, was so deep beneath the layers of his imagination, that his struggle was to believe his thoughts or to believe me.

  My life had become a roller coaster. It had been eighteen months, and the emotions I was going through were taking a toll on me. I felt like I was walking around a volcano with my toes dangling over the edge. I was being a cheerleader for Don, a pillar of unwavering strength to my family and friends, but the whole time, I was faking it. They all thought I was strong, but inside I was shattered glass and each turn cut me deeper. The cuts pierced me to my core, and I was merely holding on by my fingertips.

  The loyal doctors were at their wit’s end with me, too, and kept saying, “Kathi, I’m a heart doctor; I’m a neurologist; I can’t deal with the enormity of your emotional life. You need to talk to a professional.” I was at my breaking point.

  One evening, some friends asked me to dinner. I left the house wearing my “I can do it all” face and holding all the feeling of the day within me, but the gravity of it finally came crashing down. I was driving down Sunset Boulevard playing the scene of the morning over and over in my head. The unfairness of it, the months of trying, the sleepless nights. I couldn’t take it anymore. I was depressed and completely deprived of a decent night’s sleep.

  I was staring at the road, not remembering driving from one stretch to another. I was in a trance of sorrow. Not feeling sorry for myself, but a hypnotic state of the last eighteen months swallowing me up. I was staring at the double yellow line. I kept driving, but I thought, If I went over that double yellow line, my pain would be gone. I kept thinking it, and there they were in my mind—my beautiful children, and yes, my husband who I loved more than any love I ever thought possible. I grasped the steering wheel tightly and knew I had to go on. I had reached a dangerous depth of depression, and no one knew it was to such a serious degree. I had hidden it better than even I thought I could.

  The next day when two doctors were visiting Don, I stood in the hallway talking to them and uncontrollable tears started to flow. I never wanted Don to have the guilt of causing me any kind of pain, so I made sure we were out of earshot. I looked at the doctors, who had for months been recommending I find professional help, and said, “I’m not crazy. I’m only acting crazy. What’s the name of the therapist you think I should see?”

  “I’m relieved you’re going to talk to someone, Kathi.” Dr. Liker quickly gave me her name. “No one can possibly go through what you’re going through without professional help.”

  “Will you call and explain my situation?” I was nervous to talk to a stranger about my life and didn’t want to spend the first meeting explaining everything. I wanted to get to the nitty gritty.

  Dr. Shpiner gave me fantastic advice. He said, “You know what it’s like to open a road map and then how hard it is to fold it back? Kathi, you don’t need to open the entire map. Only open the part of the map you’re dealing with now.”

  I walked nervously into Dr. Bonnie Berman’s office not knowing what to expect, but I got right to the point and told her how devastated I was at Don’s accusations. Dr. Berman understood and respected that mindset, and with that, we were off.

  “If Don wasn’t ill and treated you like this, what would you do?” she asked.

  “I’d probably get really upset,” I said, “and strongly, and I mean very strongly, give him a piece of my mind.”

  “Then why don’t you?”

  “Are you kidding? He’s a quadriplegic on a respirator. How could I even think of raising my voice to him? He’s fragile.”

  “Kathi,” Bonnie said evenly. “He has no right to treat you unfairly. You deserve the respect he’s always given you. You need to interact with him as you always have. It’s your life, too. You’ve told me you’re trying to make life as normal as possible for him; then act normal. It’s a two-way street. Do you think Don would be open to meeting me?”

  “I doubt it,” I told her. “Actually, I would be shocked if he agreed to meet with you.”

  Don was up in his wheelchair waiting for me to come home. He knew I was going to see a therapist and didn’t react to the idea one way or another, but when I walked in the door he was interested in what had happened. I casually mentioned the doctor would like to meet him, and to my utter astonishment he mouthed, “OK.”

  “When?” I asked, still shocked.

  “Today,” he answered.

  I immediately called Bonnie. “Do you think you could come up to our house today to meet with Don before he changes his mind?” I did not want to lose this opportunity.

  “I think I could rearrange some appointments and be at your home as soon as possible,” she said.

  By the time Bonnie arrived, Don was back in bed. I led her into our room and introduced her to Don. I took a seat next to him, and she sat at the foot of his bed. Within minutes she got right to the point. She asked Don all sorts of questions about how he felt about his manhood. I was shocked he was answering her, “Yes, I do feel less.”

  “Are you feeling like you can’t fulfill Kathi’s needs in the same way you did before you were ill?” she asked.

  “Yes,” he answered. “I can’t.”

  My heart was crushed listening to this conversation. The afternoon was filled with his emotions pouring out through lip-reading and the spelling board. I had never seen this kind of vulnerability from Don, and at the same time, I was in awe watching him convey his deepest feelings to a complete stranger. This was so unlike him. The depth of his hurt must have been unbearable for him to open up like this. I tried to hold back my tears, but it was impossible. Bonnie had him describe his dream, had me use every bit of energy I had left to argue my feelings and not let him get away with how he was treating me.

  As I walked her to the door, she stopped and looked me straight in the eyes. “Kathi, I heard your story before I came here, but this is much more complicated than I ever imagined. In the thirty-plus years I have been a therapist, I’ve seen a lot, but nothing like this. I think you’re deeply depressed, and if you’d like me to admit you into a hospital for a week, I will.”

  “I don’t want to go to a hospital. Just knowing that you understand my problems is a beginning I feel like I can work with.” I didn’t have to see Bonnie too often, but she helped me with the tools I needed to work with my complicated situation. It was constantly a work in progress. Don put me to the test. Through the wringer. I wasn’t going to give up, and I could feel it—I had passed his test.

  That day, I learned how important professional help is and wished I had sought it sooner. My friends and family had been incredibly supportive, but professionals can be objective where friends and family can’t always be.

  Friends have your best interest at heart, but they are never walking in your shoes and seldom have any experience with the problem at hand emotionally—or in my case, medically. My friends were very sympathetic, and I don’t know what I would have done without them, but in many instances, their advice did not come from experience. It came from their personal opinions. I welcomed all the ideas and suggestions, and many times it helped, but sometimes it was difficult. Medical suggestions would come up—friends excited
ly reading about and sharing new solutions and treatments—enthusiasm always came from a good place; but I often ended up feeling guilty that I wasn’t putting Don on a plane to wherever the newest possibility was. I appreciated their enthusiasm, but there were some suggestions that I knew were medically and logistically impossible, and I wasn’t ready to divulge the deeply personal reasons why. I ran everything by the doctors, but more often than not, I learned the “lay suggestion” had no bearing on Don’s case because they had no idea or experience with all its complexities. I could tell it hurt some people’s feelings when they felt they were being ignored, but at the end of the day, my steadfast focus was always Don’s well-being and happiness.

  Seeking a professional helped me deal with these delicate situations. The therapist I found was a much-needed sounding board who helped me develop a skill set that would aid me emotionally through many situations. Someone to talk to who had absolutely no skin in the game, no emotion, no one-sided opinions. I could say things I’d be too embarrassed to share with friends. I could vent my frustrations without feeling I was being judged. It was hugely beneficial for Don to meet with the therapist, too. As I said, I was shocked when he agreed. She immediately got to the heart of subjects I would never have had the nerve to approach, and I quickly learned he wanted to talk about his frustrations. He needed a facilitator to listen, to be a bridge between the two of us. He was a typical guy wanting to “fix” things, not skirt around them. He only met with the therapist once, but that one time was a lifesaver.

  Don’s vocabulary never included phrases like “no” or “I can’t” or “you should have.” His optimism was contagious, and luckily I caught it, otherwise my days and nights would have been completely unbearable. The mind is an interesting thing. Controlling it no matter how difficult it can be is a gift, especially when living in an unusual situation.

  “Don,” I cooed one morning, my face close to his, “Dr. Shpiner is visiting this evening. He won’t be in too much of a rush this time, so what do you say we greet him in our living room and make it a nice little casual evening like we do with our friends?”

  Don was lying on his side as his nurse was dressing him, listening and staring attentively into my eyes. His morning dressing routine was sometimes the best time for me to capture his full attention. He laid propped up on his side as his nurse rolled him from one side to the other to dress him. I knelt next to him with my chin resting on the mattress and quickly changed to the opposite side when he was turned. These early morning conversations, nose to nose, were a little trick I came up with to distract him and spare his embarrassment of being bathed and dressed by someone other than himself.

  I had reconstructed all his pants with Velcro on their sides and his shirts split in the back with soft ribbons. This way he could wear “normal” rather than “handicap” clothes and look as handsome as ever. Before Don’s stroke, he never much cared about what outfit I thought he should wear, trusting everything I suggested would coordinate. Now even this task was something he personally and fully embraced, savoring control wherever possible. Each morning I would hold up at least three or four different choices, and as if studying a finely shaded Monet, he made his choice for the day.

  “OK,” Don mouthed with his genuine, loving smile. “Let’s meet Shpiner in the living room tonight.”

  Looking out past the pool as the sun set over the mountains and peacefully sank into the Pacific, Don and I relaxed in our living room as we awaited Dr. Shpiner’s visit. I felt so adult in this room; the gilded clock ticking away on the mantel, exquisitely hand-painted silk cloth upholstered chairs, and the soft grey-blue chenille fabric covering the fringe-trimmed sofa tied it all together. We could have been in a Parisian pied-à-terre or a sophisticated apartment in Rome. No, we were in our own little jewel box in the middle of Los Angeles—the home we created for ourselves decorated with treasures we had collected together. Across the room a fire gently flickered and the amber reflection on Don’s face mirrored his contentment, or so I had come to believe.

  The bell rang, and I quickly greeted Dr. Shpiner as he walked across our courtyard to the side kitchen door he always used.

  “Bob,” I called, “this way. Come through the front door. Don is up in his wheelchair waiting for you. You always visit with us so early in the morning. We never have the chance to casually talk and enjoy our time with you.” My thoughts momentarily detoured to the time Don and I ran into his dermatologist in Century City on our way to a movie. He had never seen Don up out of bed and was shocked to see how great he looked, albeit in his wheelchair. Dr. Shpiner seemed to have the same reaction as he followed me and spotted Don waiting for him. I pulled up a chair for him to sit close to us, and we began the evening with short pleasantries.

  Our time together changed in a matter of minutes. The dark clouds slowly replacing Don’s smile were a sure sign a storm was brewing, but it was his eyes that always gave way to his true feelings. He looked straight into Dr. Shpiner’s eyes and mouthed, “Will I ever walk again?”

  “No,” Dr. Shpiner answered without hesitation.

  “Will I ever talk again?” he mouthed with precision, wanting to be completely understood.

  “No,” Dr. Shpiner answered.

  “Will I ever breathe again?”

  Time ground to a stop as Dr. Shpiner looked straight into Don’s eyes, and with conviction said, “No, Don, I am so sorry.”

  The air was as thick as London fog. I was holding in every raw feeling I had ever possessed. These questions…where had they come from all of a sudden?

  Don looked intently into Dr. Shpiner’s eyes and mouthed, “Then why should I live?” Turning to me, he mouthed, “I want to go to bed now.”

  I was devastated, and it was apparent Dr. Shpiner was too. It had been eighteen months since Don’s stroke, and our life was finally starting to have a semblance of acceptance. Don had been so convincingly optimistic that he had us all believing he was on a positive track mentally. I hadn’t taken into consideration that he wanted to hear the truth. The absolute, unadulterated, brutal truth.

  After Don’s nurse wheeled him from the living room, my eyes immediately filled with tears that quickly ran down my face. As I wiped the moisture from my cheeks with the sleeve of my blouse, I said, “Dr. Shpiner, Don will be gone by tomorrow. He doesn’t want to live anymore.”

  I quietly crawled into bed next to Don, trying not to wake him. Every nerve in my body hemorrhaged with sadness as I gently put my hand on his chest. It was pulsating to the rhythm and melodic sound of his ventilator. Don knew the truth now.

  Very early the next morning, I opened my eyes to the DK Team swirling around us, practically running into one another like a Three Stooges skit. Don was shouting in his own special way, “I want two physical therapies each day instead of one along with speech therapy and whatever else you all think I need.”

  “What’s happening?” Don’s nurse asked.

  I looked from Don to his nurse and back again, giving the biggest smile I think I had ever had. “Don wants to live. It’s a new normal. Let’s make it happen.”

  It was at that moment I realized Don had accepted his life. A mammoth moment important to every patient and to every caregiver. Accepting a new life was the only way I was able to chart the uncertain and compromising waters we were sailing through.

  9

  RELEARNING TO FLY

  “There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.”

  —Erma Bombeck

  For years after Don’s stroke, I never even considered going away without him. Our world-traveling ways seemed like a distant dream. Being a caregiver was more than a full-time job, and the thought of being absent came with a whole new set of anxieties and complexities.

  “Don, I just got off the telephone with Donna and Greg Econn. They’ve invited me to join them, along with Kimmy and Watty, for five days in the Dominican Republic at a home they’ve rented. What would you think if I we
nt too?” I nervously asked. I wasn’t sure what Don was thinking as he turned his head away from me. He had a pensive look on his face and seconds seemed like minutes. Was he upset with me? Did he realize I hadn’t been anywhere for quite a while? Was he worried about being home without me? “Don, I’ve talked to my kids, your kids, and some of our friends. Everyone is willing to take turns staying here so you won’t be alone with just the medical staff. Bryan and Paul volunteered, and they’ve been here since day one. You’ll be in good hands.”

  He turned back towards me, and with a half-hearted smile mouthed, “Yes, you should go.”

  I hugged him as best I could while not pulling on his trach. The darn trach and tubes were always in my way, but I knew how to carefully maneuver around them. As he watched tears filling my eyes, I think he realized how much this little trip was going to mean to me. I knew he was being unselfish. That was Don, and even with his challenging life he tried to find ways to give back to me.

  It was so hard to leave my children when they were young, but the list of instructions I left for their care paled in comparison to the list I made this time. Our home was finally running like a finely tuned clock, but any changes could throw it completely out of kilter. I couldn’t forget a single thing before I left, and those volunteers, or I should say angels, who were to stay with Don needed a lot of advice on how our days operated. Movie days were planned, outings to restaurants, partner meetings, and grandchild swim lessons at the house for Don to watch. My friend Jenny Jones filled many spots on the calendar to read to Don. “Kathi, I thought Don would enjoy a story from the Wall Street Journal or The Economist. No, he wanted me to read The National Enquirer to him,” she later shared with me when I returned.

  When I was on the plane, I couldn’t stop thinking about Don. Friends and family had encouraged me to go, saying I needed to take a little time for myself. I kept having doubts about that advice. I felt terrible without Don. My mind was full of memories. I could smell him and sense him sitting next to me. I could feel us arm-in-arm as we always were when our flights would take off, but he wasn’t with me this time. I was thinking about him in his blue cashmere sweater. He always wore that sweater when we traveled. Even though I was with a group of friends, I still felt so lonely without Don. It was impossible not to be scared that something might happen while I was away. Everyone told me that it was good for me, but I had a hard time being apart from Don.