Not long after the surgery, I went to the country with my husband. He was eager to show me the completed interior renovations of our cottage, which we had agreed to do the previous fall, before I got sick. He was bursting with pride. He loved the country. It was his place to reconnect to his soul and let go of the worries of day-to-day life. But as I walked through the house, I told him that if I should die, he would have a really easy time sharing his home with another woman since nothing about it reflected me. I know that it was a horrible thing to say, and my words crushed him. But at the time, I didn’t really care. I am a city girl, and I did not want to heal in the country, but because I was not allowed to be alone, I had no choice. Jon had thought that he would work from the country for the summer, enabling me to have a peaceful place to gain back my strength. He made sure that there was always someone with me if he had to return to the city for any reason. The only problem with his decision was that this was Jon’s safe place, not mine. If I was mean, it was too bad. He would have to deal with his hurts and disappointments on his own. I was nobody else’s therapist at that moment.
My doctors told me to take at least three months off work. I had nothing to do except think about me. I was in the depths of pure narcissism, and I relished it. Look at that—finally, I came first.
The kids were away at summer camp, and all I knew was that I was stuck in the country for the summer. How could I heal in a place I barely recognized? I knew I was depressed, and truthfully, I was rarely depressed. These were foreign feelings to me. I may be a happy and content person by nature, but what I needed now was to explore that dark and dreary place. I had always encouraged my clients to go there if they needed to, but then get out. I found myself stuck there, reveling in the muck like a pig playing in mud. There was a part of me that needed to really understand what misery and anguish felt like.
My days seemed endless. Jon was happy helping landscape our property. He was getting his needs met and was probably thrilled to be away from my gloomy presence. I was not exactly fun to be with. I watched him closely from my window. He is a big man, but he moved around easily and effortlessly. He loved the hard work. Chopping trees and digging trenches were therapy for him. He could go on for hours, sweating and loving every minute of it. I am long and lean, and I found myself exhausted just walking around the house. I both envied and resented his well-being. I had always taken good care of myself, whereas he simply ate and drank whatever he wanted. How could I be the one who got sick? For the first time in my life (and I hope the last), I truly felt that life wasn’t fair. I felt like a lost lamb, weak and vulnerable, and oh so very sorry for myself. I needed to mope and bemoan my fate. Thank goodness I had my dog, Scruffy, for no matter how miserable I was, she thought I was perfect.
I stayed in this dark, bleak place for more than a month, until one day I couldn’t take it anymore. We must have had twenty people working on the property daily. There was constant noise from morning until night. Privacy was difficult for me to find. One evening, I took my first post-surgery bath. It had been well over a month since I was able to bathe, and it felt like an eternity. The wait was finally over. I lit some candles and placed them all around the tub. I dimmed the lights, turned on some quiet music, and could hardly wait to get in. Bathing is one of my favorite things to do. Whenever I travel, I try to find a hotel with a bathtub. I must look like an actress in a television commercial advertising bubble bath. As soon as I slip into the tub, I can feel all my aches and pains begin to drain away from me. I become peaceful and calm. Even if I only have five minutes, it is well worth it.
Within moments of sinking into the tub, I felt myself, at last, becoming tranquil. Much to my chagrin, not five minutes later, a bright light shone through the bathroom window directly over my body. I let out a blood-curdling yell. Jon had organized for night lighting to be placed high in the trees to give the property a magical feeling. Of course, it could only be installed and tested at night. Outside my drapeless windows was a team of men setting up the lighting. I quickly crawled out of the bathtub and slithered along the floor to exit the bathroom. I felt that there was no hope for me. I so desperately needed peace and quiet.
The next day was a Friday. I tried to have a quiet breakfast, but some machine was making so much noise that I could not contain myself any longer. There are times when anger is really good. In this case it was what I needed to push me into action. At about 11 a.m., I called Jon into the house and I became completely hysterical. Perhaps he thought I was being irra-tional, but it didn’t really matter. All I knew was that if I did not have everyone, including him, leave immediately, I was going to have a nervous breakdown. I told him that I didn’t care if he had to pay the men their full day’s wages, they just all needed to get out, and to get out now. I must have really scared him, as the look in my eyes made him realize that I was not kidding around. Like a little boy, he asked me where he should go. I told him that I didn’t care, but he just had to leave. He made me promise to call him if I wasn’t well. Knowing it was the only way to get rid of him, I agreed.
There it was: peace at last. I closed the gates around the property and, for the first time in a month, sat outside, quiet and alone. It was so beautiful. I had never noticed all the work Jon had done. He was creating an oasis for me. It was to be my own private sanctuary, a place to go when I needed to feel whole. I was so busy being angry and self-absorbed that I had missed the point of everything he was trying to do. All the trees, all the bushes, all the greenery were filling my poor little lung with oxygen and life force. I know in my soul that this was the moment when I chose to live. I proceeded to cry for two hours, pounding the ground and singing, “I am alive as the earth is alive. I have the power to create my freedom.” Over and over again, I sang, until I had no more breath. And for the first time since the surgery, I fell into a beautiful, peaceful sleep right there on the grass.
So I had decided I needed to live, but now what? It was roughly four and a half weeks post-surgery, and I was still quite fragile. I hated seeing myself this way. It was time to get down to business and climb out of my hole. I looked like a scrawny little girl. I needed healthy food, fresh air, and a good pair of running shoes. My first walk was only for a third of a mile. I huffed and puffed like an old woman but was very proud of myself. I was dealing with a bunch of broken ribs, so anything that rubbed against the incision hurt. I had to go braless for the first time in my life and felt like quite the rebel. Just the thought made me giggle.
That night, I wanted some semblance of normalcy, so I decided it was time to get intimate. It had been a long time, and sexless living was not for me. I was on a mission. I bathed, creamed my body, and with great determination tried to seduce my husband. Poor Jon was terrified. He didn’t know where, or even how, to touch me. Everything hurt, but I pretended to whimper with delight instead of pain (I do not think he was fooled). The entire episode should have been a Saturday Night Live skit, because it really was quite contrived.
Then I heard the sound. It was a sound I will never forget. It sounded like a glug, glug, glug, swishing back and forth. You know the sound you might sometimes hear when you have had too much to drink and your belly feels like it’s jiggling full of water? I was stunned. I first thought the sound was coming from outside my bedroom window. I was mortified when I realized it was emanating from inside my now half-empty chest cavity, and I burst into tears. I was filled with some sort of liquid. This was a sound I had never heard before. It was confirmed. I was a freak, some sideshow in a circus! Why didn’t anyone warn me? Was this subject taboo? Did my doctors think that sex was no longer a possibility for me, just because I had one lung? Could they not have prepared me in some way? Surely, I was not the first person to experience this. I already had to adapt to so many changes, and I had no idea what I was going to do about this. I felt embarrassed and humiliated. All I had wanted was to feel normal. This episode confirmed for me that everything I had considered at one time to be normal would never be so again. It was an extremely painful realization.
Many questions flooded my mind, and I required answers. I needed to know if I was going to sound like a babbling brook for the rest of my life. I knew that I had to sleep on my left side for three months so that my heart wouldn’t move over too much, but then what? How were my ribs going to stay up without my lung? What would fill that space? Would the liquid remain there forever? Bodies were not built to exist without internal organs. My doctors did not have many answers for me. I was basically told to be patient, that all the answers would be revealed in time (which I suppose meant they did not have a clue), and that this was all part of the healing process. Their responses disappointed me, and I came to realize that I would have to find out the answers on my own.
I might have appeared normal to the outside world, but I knew there was nothing normal about my insides. I could not escape myself. It didn’t matter what Jon did or said. He could not relieve my misery. The only time I found true solace was with God and my dog, Scruffy. To them, I was still whole, no matter what was taken away from me. To them, I was perfect. As far as sex went, for now it was definitely out. I was not ready for any part of it. It would be a few months before I would venture to try it again. As the old adage goes: time really does heal all. I learned that I had an amazing ability to adapt to new situations, and in time, I learned to thrive once again.
Once I make up my mind to do something, I rarely look back. Being disciplined by nature, I knew that I would have to work really hard to become physically active once again. I think the reason I loved dance so much was that movement was effortless for me. I never thought of it as exercise. I thought of it as freedom! Since I was no stranger to pain, and no one told me not to, I pushed my body until I could barely breathe, rested a bit, and then pushed it some more. Sometimes my heart was beating so rapidly, I thought it would literally jump out of my chest. I was not just Susan Wener, a woman recovering from lung cancer. I became Susan Wener, a living, breathing science experiment.
Day by day, I gathered my strength. I thought I was doing really well until I heard myself on a telephone answering machine. I sounded breathless after just a few words. My inhalations echoed loudly, and I whistled and wheezed as I spoke. Not great for someone who did a lot of public speaking. I wondered if those days were over. Was I going to be reminded of lung cancer every time I spoke? Would everyone I talked to immediately know that something was out of sorts? First it was my hair that I thought gave me some kind of anonymity. Now what would keep me from being continuously exposed? Was I going to have to redefine myself once again? How many more adjustments was I going to have to make? I was curious about how the doctors were able to determine that I would be fine following the removal of my right lung. Just because a person can live with only one lung doesn’t mean everything will be fine.
About four months after the surgery, my empty rib cage collapsed. I could barely look at myself naked in the mirror, as one side of my chest was indented a full two inches. I looked lopsided but was grateful that I was able to hide it with my clothing. I was always shy about my body, but this was no longer about being shy. I felt deformed. My doctors told me that eventually things would return to normal. I wasn’t waiting to see if they were right. I went to see a wonderful osteopath who told me that the rib cage was compressing my liver. I worked with her for over three years two to three times a week to eventually put it back in place. But according to the doctors, I was doing just fine because I was indeed breathing! They have no idea how each little bump in the road adds up, making recovery a trying ordeal.
Sometimes, in the quiet moments, I remembered the words of that palm reader who told me at the age of twenty-seven that I would have a life filled with illness and then die young. Those words no longer kept me up nights as they had so long ago, but somehow they never left my memory bank either. If an early death was to be my fate, then I was determined to live each moment fully while I was still here. I would not live a wasted life. I would not bemoan my fate. I needed to find the strength to go on, no matter what the outcome. Someone once said that healing begins when treatment ends. Physically, I was mending well; now it was time to place my attentions on healing mentally and emotionally.
The summer passed, and I was called into my new oncologist’s office. After reviewing my case, the tumor board recommended chemotherapy. “Here we go again,” I thought. I refused to follow the doctors’ advice and determined that this time chemotherapy was not for me.
My doctors were frantic. I was only forty-one years old. They were scared that I would die. My first oncologist, who no longer worked in Montreal, called me from Texas to try to persuade me. My surgeon also called me. But my husband had my back and supported my decision. Try to imagine this scenario: Doctors begging me to take chemotherapy, meeting my husband behind my back, hoping to convince him to influence me. A husband barely hanging on, knowing that a second cancer was one step closer to the grave. And me refusing to listen to medical advice. Was I in denial? Did I have a few screws loose? Had I lost touch with reality completely? I don’t think so. This time I did my homework. There was absolutely no statistical data available that indicated I would receive any benefit from chemotherapy once the lung had been removed. My decision to do chemotherapy after my colon surgery had not prevented me from getting cancer a second time. There was no way I was going to put my body through chemotherapy just because the doctors could offer me nothing else. I was steadfast in my beliefs. Nothing anyone said would make me change my mind. I decided that the lung was the last remnant of any existing cancer in my body. Although some of those around me thought I was in la-la land, I felt myself firmly planted on the ground. I had a strength and determination growing inside me that had never existed before. I kept thinking that I needed a different approach from the one the doctors were offering me. In Chinese medicine, health is determined by balancing all of the organs within the body, along with the mind and spirit. When all systems are in balance, it is difficult for illness to exist. I was looking to shift the imbalances that may have allowed the cancer to spring to life and take root in my body in the first place. I needed to get to the source. Something was missing from Western medicine. Why were my blood tests always perfect? Why couldn’t the diagnostics used by traditional medicine warn me of irregularities long before three tumors were discovered in my lung? Here I was again, with so many questions. I wondered if they could ever be answered to my satisfaction.
I had decided to go rogue, and from the moment I made my decision, I never looked back. I was not afraid. If I was going to die, I was going to die my way. I was quite peaceful. I thought that I had come to terms with the idea of death long before. What I came to realize, now that its possibility loomed before me once again, was that the concept of death is like peeling an onion. With each layer comes a different understanding. I am not sure that I will ever truly understand them all until death becomes my personal experience, and perhaps not even then. What I am left with are moments of fear. I have learned to not be defined by them. I simply watch and notice as they change with each new experience.
When I was eighteen, I nearly died from mononucleosis. I was sick for more than six months. There is not much you can do to treat that disease, and rest is usually the only medicine. I developed secondary infections in my ears, nose, and throat. Eating became impossible. I am five-foot-five and generally weigh about 115 pounds. I was so sick that my weight plummeted below eighty pounds. Just before I was transported to the hospital, I had a strange out-of-body experience. I did not see God, or that notorious white light. But I did realize in that moment that my consciousness was on the ceiling, and I felt myself watching the entire scene from above. Nothing hurt me any longer, and I was fully aware of everything that was happening. I saw my small body lying in my parents’ big bed. My mother was crying, but I felt fine. I was semiconscious and unable to tell her that I was all right. It was then and there that I decided that one day I would work with people who were seriously ill.
—
When we are sick, we spend far too much time worrying about whether we will live or die. It would make so much more sense to think about how well we could live, or even how well we could die.
Death is inevitable. We cannot hide from it. We will never escape it. It is a part of the human condition. This doesn’t mean, however, that we cannot enjoy our lives, even if death appears closer than we might like.
I find it very interesting that when we go to a cemetery and look at a tombstone, the date of birth and the date of death are what appear most prominently. Everything that exists for us, however, takes place in the space between the two. That’s where our focus needs to be: in the space between.