Monday, June 29, 2009
Sunday, June 28, 2009
Last night I was quite despondent after seeing that my light chains had not improved confirming to me that the BMT did not work. Barbie lay next to me in my hospital bed to console me. Through the shared tears she wondered if this too were part of God's plan. Speaking aloud, I responded, 'Maybe it is God's plan that I will.....' I couldn't say the word; not in front of Barbie, but she knew. Just because I accept my eventual death, I will not hurry it through defeat and apathy. I have always accepted God's will and in so doing, have been blessed with the most fulfilled and happy life that a man could ever hope for. My faith in Him will not falter just because I am in temporary pain. Barbie and I agreed that we can deal with the intellectual preparations for the inevitable without opening that emotional scab just to reconfirm what we both already know. This is not denial; it is survival.
Today is better. Dr Blum, the infectious disease specialist, came by and gave me hope. I am determined to eat all that I can. Bishop Merrill called to say we were missed and that our friends are praying for us. And then my brother-law, Daniel, called from North Carolina. He is in medical school at Wake Forest. His wife, Emma, today gave birth to their second child and first son. He said that they had chosen a name for him. When he spoke the name, I was speechless; overcome by a profound sense of humility and honor. What a wonderful day it has become. A new soul has arrived and his name is Kevin Ezequiel Dison
Friday, June 26, 2009
Thursday, June 25, 2009
This is not a result of me going back to work, I have been like this for almost two months. It's just getting worse. Returning to work was wonderful. At work, I must always remember that I am the doctor and not the patient. As I tried to explain to a patient yesterday that at age 77 he need not worry too much about the prospect of prostate cancer he interrupted, "Stop right there, Doc, I plan on living to 107, don't you?" I stopped myself from saying what I wanted to, and instead said, "That's a great goal, don't ever give it up."
In the past, every time I felt really sick I would wonder, 'will I get better?' I always did. I have to believe that I will.
Health Score 62
Monday, June 22, 2009
Do not read chapter 5 first, go down and start with Chapter 1
Curiosity compelled me to inquire of this man’s fate after he gave to Arthur his remaining years. The illumination in his face as he described Eva’s performance disappeared, as if he had just exited a room full of light to one bordering on twilight. “He died three weeks later.” Arthur flatly stated. He went on to explain that the man had not given him his name in their final meeting. But he did live locally and one day Arthur recognized his picture in the paper associated with his obituary. Arthur wasn’t one to usually turn to the obituary page, but since their encounter, he had hoped to find the stranger through his imminent death. There was his name, his date of birth and date of death. His life reduced to one short paragraph. He had no surviving relatives, none mentioned anyway. However, the time and location of the funeral services were included.
He went on how the services were simple and respectful. The man was an attorney with a practice in town. He had a number of friends in attendance. One gave the eulogy and described his life in a way that Arthur knew was not reality. It was a list of things he did. It did not include why he did them or what he learned from them. Arthur felt that he alone truly knew this man, knew how he must have suffered with his ‘ability’, and that saddened him. Who would remember and tell his story? The true story? The service ended and Arthur began to walk home, to his empty house.
Suddenly his face changed again, back to the one lit by the memory of Eva. He seemed somehow to look younger than he did just seconds before. There was an excitement in his eyes as this new memory took over his countenance. “Then the most amazing thing happened!” He said with childlike excitement and began to tell me the rest of the story.
When he was done we both sat in silence. One word more would have been one too many.
He was looking again across the creek to some distant point beyond; not to some specific geographical location, rather to some point not bound by time or space. I looked too, eyes unfocused, toward the same point. Which point for me was as much mine as it was not his. We sat there in silence for a while and a sudden gust of wind sent a chill through the back of my neck. A random page of a newspaper blew by my feet. My concentration now broken, I noticed the lack of sounds; the playground nearby was empty. No birds were calling out to each other. The twilight had descended, but it was not yet dark. I looked at Arthur and mentioned the lateness of the hour and that my wife would be concerned at my tardiness. I stood to leave, not knowing what to say, but his eyes said it all. He then vocalized his thoughts with a simple thank you. His story was now mine. It was as if a burden had been lifted from him. But in receiving it, I also felt lifted. I, in turn, thanked him and slowly walked to my car.
In the ensuing months I would occasionally pass by the park on my way home from work to see if he might be there on that bench. I never did see him again. But I know that wherever he is, he is fine. I remember that day so vividly. His story changed the way I look at my own life. I arrived at home and tried to explain to my wife why I was late. She just gave me this funny look and moved to the microwave to reheat what was left of dinner. I was not ready yet to tell her the whole story. It would take time for it to completely become assimilated in me. I could not sleep that night. The last part of his account kept replaying over and over in my mind. As I searched for its meaning, his words continued to echo through my thoughts.
“Then the most amazing thing happened” Arthur continued. The cemetery was not far from Arthur’s house. He began to walk down a path that ran alongside a small creek to his left. On the right was a park, which at that time of day, was busy with moms and kids playing. There were people walking dogs as joggers dodged them on the various pathways through the park. Between Arthur and the creek was a straight row of pine trees, equidistant in spacing from each other. Arthur noticed something familiar in seeing these trees. Suddenly, his mind was taken back to that memory of his youth. Again he saw the fence posts from the car window.
But they were different now, they moved with him. He could see each post perfectly; no blur at all. The corn in the field also moved with him. It was no longer a memory. He was transported to the place of his memory, but the past had now become the present. He was no longer in the car, nor was he a child any longer. He was standing alone and everything was in motion: the fence posts, the corn stalks, the trees, even the clouds overhead. All was in motion and moving with Arthur at the same speed and in the same direction so it almost felt as if he were standing still, but he wasn’t. He could feel the motion. But the movement was not just forward, rather in all directions simultaneously. How could this be? He thought. All directions: up/down, side to side, backward and forward, became one. And Arthur was at the center. He could see mountains, lakes, oceans, sky; all in motion. He could not, however, find the sun. Yet, everything was illuminated. The light was unimaginably bright, but not at all blinding. Everything around him was bathed in this light. But something was missing. At first Arthur couldn’t ascertain the absence of something so natural, that it is only noticed when it is not present. Finally, he saw what he couldn’t see. He had no shadow.
He looked around everywhere, there was no shadow. He lifted his foot off of the grass below his feet; nothing but illuminated grass. He searched the skies for the source of light. He saw no sun, no moon, no stars; only blue sky and clouds. Then a thought, almost like a voice, but heard not through his ears, came to him. “The source of light does not cast its own shadow.” It stated. At first he did not grasp its meaning. Again the thought came, “The source of light does not cast its own shadow.” When finally it came a third time, the light filled his mind and he understood.
As Arthur had been telling me of this experience, he was looking down, sometimes with his eyes closed; almost as if he were attempting to see it again, and by focusing on any particular object in the present, he would lose his connection with the event being revealed. However, at this point in the accounting, he looked directly at me and said in an almost imperceptible whisper, “The light was me. It was me!”
“And then it start to rain” he said after a long thought, very matter of factly.
He described the rain as not what you would expect. It was not drops of water falling from the sky. It was a shower of words. As he looked up, words were falling toward him. And not just from above, but from all directions. The words themselves took on a form of multifaceted translucent structures; something like spheres, but without any rounded surfaces. Flat polygonal facets formed the surface. Each facet was a different color. But the colors would change as the word fell and rotated toward him. They were ever changing. He searched frantically for the word. He needed to find that one word which perfectly described how he felt at this moment. It seemed impossible as he was now surrounded by millions of words. Some were quite large with few facets and others smaller with many facets and rapidly shifting colors. The words nearest to him often represented feelings or ideas. Distant smaller words might denote the mundane functional symbols we use without thinking; table, pocket, email, pickle etc… He saw happiness float to his right. No, he had too many memories. Others he saw: joy, contentment, relaxed, relieved, charitable, loved. Each one he had felt in some way. But there was one; only one, that could be the summation of this perfect moment. He searched words near and far. Some words floated quite near to him, while others moved away at a rapid rate.
Time passage seemed as an eternity and then he finally saw it. High above and behind his left shoulder he caught the first glimpse. He turned toward the word and it filled his gaze. As it slowly descended something changed. The word became solid. It was no longer translucent. The facets became fixed in their colors. But each facet contained not just one color, but all colors simultaneously. However, they did not fuse into one white color nor were they split as one might see through a prism. All colors were present together, each one distinctly present and visible; almost as if layered, and yet each one on the surface. As the word descended, all other words became black and white and fell to the ground at his feet. They were immediately absorbed into the grass and disappeared. The one word fell upon him, enveloping his whole being, and he knew it was the right word. This was how he felt.
He was complete.
Time stopped. There was no past, neither could future be imagined. Only now was present. The moment filled his existence. The present is the gift we give ourselves. He swallowed the moment and made it his.
He was complete.
He was on the path again. The trees there on his left. The creek spoke to him as the water ran over the submerged rocks. He again heard the sound of chains on the swing-set with the yells and laughter of children. He saw the birds as they moved from tree to bush to ground and back up again, calling out in chirps and whistles all the while. He noticed he had stopped walking and was merely standing in the middle of the trail. How much time had passed? A single second, an hour? He could not tell. He began to walk home again for the first time. As he walked, his thoughts returned to the man who had given him life; who had given to him a new life.
His name was Shane.
Dedicated to Barbie
Whom I love with my whole new heart.
In Memoriam of
August 8, 1975 – August 14, 2008
Who gave me my whole new heart.
Within six months, Eva had regained her strength sufficient to begin dancing again. However, she now was driven like never before. She committed herself to dance every day except Sundays. Her passion only grew with time. Her mother made sure that she balanced her school work and what other activities she could convince Eva to participate in. But she seemed a ‘fish out of water’ anywhere else but the studio. Here she was the happiest. Her talent, rather gift for dance, became evident, not only to her own teachers, but regionally. Eventually, at the young age of 18, she was asked to join the Pacific Northwest Ballet Company. No one worked harder than Eva. Yet, no one could have enjoyed themselves more. When she was dancing, she became lost in her real self. She could express in form and motion what she could never find in words. She somehow felt the drive to fill a lifetime of desire in a few short years. She did just that.
Arthur knew that he did not have much time left. But he had few regrets. The one that did surface on occasion was that he would not be able to see his grandchildren grow to adulthood. He kept up on their progress. Mark was an excellent student and, like his father, was drawn to sports. He played Little League baseball and was the short-stop on his middle school team. Arthur was especially proud of Eva’s accomplishments in dance. He tried to go to every recital that his work schedule allowed.
Work; Arthur buried himself in work. It was who he was. It was what he knew. Some people, with the realization that they had only two years to live, would quit their job and attempt to fill their lives with as many extraordinary experiences as they could, travelling, skydiving, bungee jumping , etc… Things that they had meant to do for years, but had ‘put off’ because they were always too busy with the mundane. Arthur was content to work. He had already passed through more extraordinary experiences than he cared to remember. People still needed him; and he needed them to need him.
It was a little more than a year since he had added to Eva’s life when a stranger walked into his shop. Arthur, not looking up, said he’d be with him in a minute, as he put the last screw in the air filter casing on an old roto-tiller. He got up, wiped his hand ritualistically on an oily rag and approached the service counter. The man was older, older than Arthur by a number of years, but Arthur could not guess his age because of the youthful look in his eyes. His eyes; there was something familiar about his eyes. Arthur searched his memory for some glimpse of recognition but before he could do this the man exclaimed, “Arthur, it is so good to finally meet you,” And extended his hand to shake Arthur’s. Arthur, somewhat embarrassed as he stole a quick glance at his greasy hand, hesitated as he raised it. The man noticing his hesitation, with firm resolve, reached forward and grabbed it with both of his hands and only then said two words. “Thank you.” Arthur felt it immediately. He knew the sensation only so well, but had never sensed it in reverse. It was as if the river that had been carrying him for years was now flowing upstream. Arthur looked down at hand held firmly in the stranger’s hands, then, slowly he looked up into the stranger’s eyes and only now recognized him. With tears blurring his vision, he saw those eyes; that were his eyes, also mirrored with tears.
Arthur was speechless. The man, continuing to grasp his hand, finally broke the silence. “Arthur, as I am sure that you now realize, we possess the same …. ability.” He faltered on the word ‘ability’ which Arthur, only so well, understood. “You now stand there as shocked as I was when you gave me such a gift so many years ago in the hospital. For years, I tried to understand why you did it. How could you give so much to a total stranger, without even any explanation of who I was or how I was suffering, but you did. Your reason still remains a mystery to me; however, I am resolved to leave it as such.” He motioned to two wooden chairs next to the door and they both sat, positioning their chair to face each other. He continued, “I, like you, knew when I was going to die. It is never exactly seven years, but occurs usually within a month.” He added, “Possibly, you already know this.” He continued, “When you found me, however, I was terrified and angry because I still needed to live for a long time. That day in the hospital was not my time, I knew that I still had a few years, but that wasn’t enough.” The man paused a moment as if to consider the best way to proceed. “I have a son, had a son,” he corrected. “He had sustained a closed head injury in the war and could not care for himself. I was his sole caretaker. There was no one else.” Tears again filled his eyes. “You see, I could not die, I had to be there for him.” He took Arthur’s hand again and continued, “You gave me the time I needed. Without knowing why, you gave it to me.” The stranger’s eyes silently conveyed a gratitude beyond words.
“I have suffered with COPD, chronic obstructive pulmonary disease for many years. That day that you saw me in the hospital was from a particularly bad exacerbation. After you left, however, I recovered quickly, to the amazement of my doctors. I returned home to care for my son and continued to do so until his death 6 months ago. Without your gift, I could not have been there for him. I have spent the last five months looking for you; to thank you with the only gift that I had left. The gift of time.” He stopped and with a look of genuine satisfaction stated, “I have given you all the time that I have.”
Then the question came to Arthur’s mind. The question that he could never ask before because of the certitude of its answer. Since he was 21, Arthur had known the approximate day of his death. Now, for a brief moment, he experienced uncertainty. He had no idea how much time this man had given him. Torn between the relief of uncertainty and the habit of having known he struggled to ask and finally blurted, “How long? The man, understanding their lifelong shared dilemma, their gift that remained a curse to the giver said with a wry smile, “More than a few years, but less than seven.” And, in so doing, magnified his gift to include uncertainty.
Arthur was now just like everyone else; ignorant to the length of his life. In that moment he felt a freedom that he could not even remember having felt before. He audibly uttered a thank you. But the words fell flat compared to their intention. The man briefly shared a few other thoughts and insights that only he and Arthur would understand. Arthur, in turn, could voice his feelings about their shared ability and felt so relieved in doing so. An added gift was knowing that he was not alone. The fact that someone else had walked the path that he was on encouraged him. He would never feel alone again. And then, as suddenly as he had entered Arthur’s life, he stood, wished Arthur well, and was gone.
He stopped speaking and appeared to be lost in thought. There was a faint smile on his face as if he were remembering a cherished experience. In the silence, I wondered how many years had passed since this ‘reversal’ had occurred. There was no way to tell. The late afternoon sun still gave its warmth despite the occasional breeze. Hours had passed as he related this most extraordinary of stories. One could only wonder how it would end. But I felt that he had more to tell me, his audience of one. He had entrusted me with the story of his life; to not let it die with him.
He chuckled as the memory concluded and looked again at me and began, “It was only last year when I was able to see Eva perform as lead ballerina in the Pacific Northwest Ballet Company’s production of the Nutcracker. She was transcendent. It was the singular greatest moment of my life. She moved perfectly. Every moment of every day that she had prepared was fulfilled in that performance. In her lifts, gravity ceased. It was as if her partner was holding her down to keep her from flying. I sat mesmerized by her focus and form. But her presence was not at all technical; each moment was filled with emotion. I felt as if she were giving her whole life to us, to me; every sadness and every joy. I never felt more alive. That was the gift the he gave to me; to live to see her dance.”
Sunday, June 21, 2009
Saturday, June 20, 2009
Three days after the funeral, Arthur returned to the hospital. There was one particular nurse named Frances that had been quite attentive in caring for his wife. She always seemed to be at her side, keeping her comfortable and clean. Arthur wished to thank her and brought a two-pound box of See’s Candy. He never bought the pre-packaged assortment; rather he would hand pick the box, usually with his favorites. This tended mostly towards dark chocolates. He spoke briefly with Frances, thanking her and turned to leave when something caught his eye.
He noticed a man, sitting in a wheelchair in the hallway around the corner and out of sight from the nurses’ station. There was a green mask on his face supplying him with oxygen as the man struggled to breathe. Something about him drew Arthur inexplicably toward him. Arthur slowly walked down the hall in the direction of the man, not directly looking at him, so as to not indicate his curious purpose. As he approached and slowed, however, his intent became clear. The man looked up from his chair directly at Arthur. His gaze contained both a powerful focus, fixed directly upon his subject while simultaneously seemed to look beyond at some distant object, maybe real or metaphysical; Arthur couldn’t tell. But something about it seemed hauntingly familiar. He could not, however, place it. His eyes belied a tortured longing, something desperate and vacant. As they regarded each other, Arthur stretched his memory, frantically trying to recall where he had seen that look; seen those eyes before. In a moment, it came to him, and its realization shook him to his core.
Suddenly, without warning, and seemingly not in control of his own movements, Arthur was kneeling before the man; the fixed gaze never broken. The labored breathing was the only sound. With one hand on each of the sick man’s knees, Arthur did the unthinkable. He gave him life. Instantly, the look he saw changed to that of unimaginable astonishment. The man knew what had just transpired. As his eyes searched Arthur for an explanation, which would not, could not be found in this strange benefactor, Arthur stumbled up and backwards. In his previous experience with Randy and his wife, the recipient of his ability had no knowledge whatsoever of what they had received. This stranger somehow knew. Unable to process what had just occurred, Arthur, in a state of total confusion, turned away and half walked, half ran out of the hospital; his mind fixed upon those eyes that had captured him in the power of that terrible moment. He knew those eyes only so well. They were the ones that each morning looked back at him from his mirror.
What had he done? This question plagued him for the next month. How could he just give away 7 years of his rapidly diminishing life to a total stranger? It was not an accident, however. In that moment, his intentions were clear, no matter how mysterious the rationale. Who was this man? A week later, Arthur went back to the hospital, hoping to find the man, hoping for some answer, but he was not there. He did not know his name and knew that the nurses were legally prevented from giving him any information. He was confused. He had just lost and wife and a part of his life. The river now carrying him had push-pulled him in directions where he had no desire to go. Nothing could be changed now. He tried to convince himself that there was some greater purpose in this and received a little consolation. But this little consolation felt true, and it was all that he had, so he held onto it with the hope that, some day, he might understand. He returned to work.
Life slowly inched back to a sort of warped normality. People were kind at acknowledging his loss, but never quite knew what to say. They remained distant. This did not bother Arthur. His conversations with others remained superficial and consisted of cordialities and business transactions. His house never really felt like it belonged to him alone. It was not a house intended for one person. There was nothing in the house that did not remind him of his wife. He only felt at home when he was visiting his daughter in law and his grandchildren. It was there that he was finally alive again. He visited as often as he could. Eva and Mark were growing up so fast. Eva was becoming a young woman of grace and kindness. Mark was forever absorbed in exploring, reading and building.
There are those days in life, individual days, that become implanted in your memory because everything changes in a single moment. Images, frozen in time, like a painting on a wall. Arthur had too many paintings hanging already, only now to add one more. The call came on a Tuesday morning. He had just come back from the store and was making a grilled ham and cheese sandwich for lunch. His daughter and law spoke, although he barely recognized her voice. Through her broken speech he learned that Eva, now 13, had just been diagnosed with acute lymphocytic leukemia. She couldn’t continue through her sobs. Arthur promised to come immediately and hung up the phone. He slumped into a chair, sobbing, as the smell of burnt bread filled the room.
He thought, is God punishing me? Have I not suffered enough? How can a child, so pure and beautiful be made to suffer? Over the years, Arthur’s belief in God had grown. He did not blame God for his losses, but he wished that he understood what it was that God required of him. On this question, the heavens had remained silent.
When he arrived in Seattle, Eva was already in the hospital. The pediatric oncologist explained that they wanted to take an aggressive approach and start the process for a bone marrow transplant immediately. Eva continued, as usual, to be forever positive. She reassured her Grandpa that everything would be alright. A search for a suitable donor was initiated. Family members were tested first. Arthur hoped that he would be a match. As it turned out, the best match was Mark.
The bone marrow harvest was done as Mark lay on his stomach, his mother wanted to hold his hand, but Mark was too big for that. They heard the crunch as the large needle broke through the bone in his pelvis. Mark winced as they aspirated the bone marrow sending a terrible ache throughout his lower body. But he never uttered a sound. He knew that this meant life for his sister. He was the man of the family, and needed to act as such.
A week later, Eva received the chemotherapy that would kill her bone marrow, and hopefully the cancer cells as well. Two day later, Mark’s bone marrow was placed into her body. Initially she felt fine, however, a week later, things got worse. With a white count of zero, she developed pneumonia which then progressed to acute respiratory distress syndrome. Her lungs were filled with infection and fluid. She could no longer breathe on her own and was placed on a ventilator. Arthur was devastated. This sight was only too familiar. He remembered Randy has he suffered similarly. To see Eva like this was more than he could handle. The doctors would briefly rush in twice daily and say what was happening clinically, attempt to provide some hope, but their faces belied their fears. Arthur could hear them talking outside the room as they mentioned her less than 50% chance of survival. The next day she worsened as the ventilator, now at high pressures, could barely keep her adequately oxygenated. Arthur knew that it was his turn to intervene. The decision was no decision at all. Arthur could do the math; it was always and ever present in his mind. To give seven more years of his life meant that he would die soon; a few more years. To him, however, it was no sacrifice.
Eva’s mom had taken Mark to the cafeteria to get some dinner. Arthur stayed behind. Alone with Eva, he simply took her hand, spoke her name and gave to her the majority of his remaining time. Within two days, she began to improve. She ‘turned the corner’ the doctors would say and they removed the breathing tube. As her lungs healed, Mark’s bone marrow began to grow within her and replace the cancerous cells with healthy ones. She recovered completely. What Arthur did not know was that if he had not intervened, she would have recovered on her own. She would have remained healthy only to have a recurrence three years later. She would have died at age 16. His gift to her was to add seven years to her life from the time that she should have died. Eva would live another 10 years.
Thursday, June 18, 2009
Arthur had stopped speaking. My retreat into this mental digression had been momentary, but Arthur had noticed my inattention and decided to wait for my return. There was no impatience in his demeanor, but rather a mild sense of urgency to continue with the story. He needed me to hear it in its fullness. I thereafter remained attentive.
The realization that Randy died so close to seven years after Arthur had saved him confirmed Arthur’s greatest fear about his ability, and in so doing, created a new torment in his heart. For now he knew with certainty something he had only feared before. He knew when his wife would die. Arthur had hoped that his ability would somehow add seven years to a person’s life in addition to the life that they could normally live, this was only a dream of his, but he held onto it for these last seven years. To now know that, once saved, he and he alone would have the horrible knowledge of a loved one’s mortality date was more than he could bear. But so it was. And now he must live with the absolute knowledge of his own wife’s limited lifespan.
Two years prior, Arthur’s wife, while returning from a visit with her sister, was involved in an accident. Her sister lived 50 miles north of them in a more mountainous area of the state. That evening, the temperature had dropped below freezing. While maneuvering around one particularly tight curve, she hit a spot of black ice and lost control of the car. Attempts to compensate were fruitless and she went over the side of the embankment and down about 20 feet into a small river. The recent rains, however, had significantly raised the water level. The vehicle now lay flipped over with water rushing in and through the car.
There she lay unconscious, under freezing water, alone. The accident was immediately reported and EMT’s were at the sight within 7 minutes. However, the extrication was difficult, and it was calculated that she was underwater for 26 minutes before adequate resuscitation was achieved. She arrived at the hospital intubated on a breathing machine, hypothermic with multiple injuries, but her heart was still beating.
Was there even a decision here, Arthur thought as he arrived at her bedside in the intensive care unit? The doctors had reported her condition as grave. One doctor had just bluntly said, “She brain dead, there is nothing that we can do.” While some of the others wanted to wait a bit longer for the hypothermia to resolve. Her other injuries were also severe. She had sustained a closed pelvic fracture wherein she had lost a lot of blood and was being transfused. Her right tibia and fibula were crushed in an open compound fracture. She had four left rib fractures and a left kidney contusion. The doctors gave Arthur very little hope of survival.
They ran a second set of EEG’s 12 hours after her arrival and it didn’t look good. There appeared to be little or no brain function. Arthur could not wait any longer. He asked the nurse if he could have a moment alone with his wife. Kneeling at her bedside, he took her still cold hand into his and simply spoke out loud her sacred name and gave her freely the only thing that he could, seven years of his own life. He felt that it was a bargain, for he could not imagine life without her. It just felt so natural to do it; no more difficult than taking a breath.
There was no fanfare, there was no brilliant light. After about five seconds, she opened her eyes and recognized her husband, now standing over her, his eyes filled with tears. The only message that she could give him was a slight, but assuring, squeeze of his hand.
The next day, as the doctors were rounding, they were standing outside the ICU room where Arthur sat with his wife. They were discussing her case and were clearly at odds to explain what had occurred. Finally Arthur heard one doctor comment, “Well, I guess you’re not dead until you are warm and dead.” They left it at that.
She slowly recovered. Arthur was always at her side. The leg fracture underwent a surgical open reduction and internal fixation and eventually needed a skin graft. The pelvis, ribs and kidney were left to heal on their own. Months of physical therapy followed, but soon came the day when Arthur and his wife could go home.
She was alive and slowly getting better, but things would never be ‘normal’ again. She would always walk with a cane. However, a fiercely independent soul, she cringed at the idea of ‘being taken care of’. Slowly, though, they rebuilt their lives together. They made plans and eventually added a family room to the back of their small house and remodeled the kitchen. This was something she had wanted to do for years, but Arthur just couldn’t commit the time or money. However, Arthur’s approach now had changed. What if he only had seven more years with her? Could he afford not to make her happy? With the new kitchen done, Arthur’s wife developed her passion for gourmet cooking and always seemed so content whenever she would place a new creation in front of him for dinner. The dish would especially taste divine to Arthur on those few occasions where he would let himself remember that these moments shouldn’t actually exist. The loss of seven years of his own life never surfaced to a level of conscious thought. He was the beneficiary in this decision. At this point Randy was still alive and Arthur continued in his deluded hope with regard to the possibility of a prolonged uncertain departure point for those on whom he had used his ability.
The reality would be more than Arthur could handle.
The drive home from Seattle, for Arthur, was pure torture. His mind raced with the realization that to give someone seven years of his life meant seven years. There was no mercy in this fixed time; this knowledge of when the one closest to you would die. How could he live with the certain knowledge of when his beloved would leave him? Could he act relaxed, open or normal around her? He knew he could never tell her. That would be cruel. No, this was his burden to carry alone; his responsibility.
They arrived home; their fractured lives to rebuild. They had lost their only child and Arthur felt himself losing hope. Initially, he was angry. Why was he given this ability if its fixed knowledge of death caused him to despair? Time was now his enemy, each moment never to be recovered. Intellectually he knew that without this so called ‘gift’, (although he never thought of it as a gift), his wife would have died two years ago, and Randy seven years prior. But in the present, that was no consolation. Maybe it would have been better to not know the future and therefore not suffer in its anticipation the dread of the inevitable pain to come. But Arthur also knew what great benefits; even blessings had come from this life extension. Mark and Eva were in their lives. Randy’s wife had always been so loving toward them. His own wife was still there, and yet, in a way he already missed her. Arthur grieved deeply and forced himself to become numb to all of this by burying himself in his work. He spoke little, even less than normal for him. His wife tried her best to lift him from his self-imposed prison. But in that first year following Randy’s death, Arthur spent most of him time in the shop, dismantling and rebuilding small engines. This was something over which he had control.
One day there was a message from their daughter in law. Eva was going to perform in her first major dance recital and very much wanted her grandparents to attend. Eva and mark always brought them joy whenever they were with them. Mark was much like his grandfather. He could spend all day taking apart a clock, just to explore how it worked and then reassemble it into perfect working order. He was curious about everything, his questions were never-ending.
Alternatively, Eva never was still. She seemed to move in a manner both harmonious and synchronous with the movement of the earth, almost as if she stopped so would time itself. From age two, she was always dancing; sometimes to whatever music might be playing; often to the music in her head.
After Randy’s death, Eva’s mom used some of the insurance payment to enroll Eva in the best dance school that they could afford. Even at her young age, Eva excelled. It did not take much coaxing to get Arthur to close the shop for a week so that they could make the drive north.
When they arrived, Mark and Eva both burst out of the house, literally flying over the porch steps to race to the car to surround them with hugs. Both were speaking simultaneously to report on everything in their lives. Their pressure to report gave a sense that relating these facts was the most important thing on earth and the words could not be expressed fast enough. Arthur and his wife fought their way into the house with Mark and Eva alternatively jumping and skipping as they dragged them up the steps into the living room. Eva spent an hour with Arthur, explaining every move in her dance routine and using a vocabulary that Arthur did not recognize, pirouette, fouette, en croix…. She brought out the three costumes that she would wear in each of her dances and went on how she even had a solo. Mark, on the other hand was wearing a pathway in the carpet as he went back and forth to his room, each time bringing a different object made of Legos to show his grandmother; cars, trucks, planes, boats and spaceships. He was very careful to point out where the engines were and added the appropriate sound effects, an ability innate to all boys over the age of two.
Two nights later was the recital. They arrived early to get good seats near the front. As Eva danced, it was clear that she was in her element. Even at age six, you could tell that she really felt the meaning in the motion. The only description of the look on her face, as she moved across the stage with such purpose, was that of pure joy. She was lost in her own world of movement and music. The other little girls stumbled around, looking at each others’ feet for cues on the steps. If Eva made mistakes, and she didn’t appear to make many, she seemed oblivious to them.
The second to last dance featured her solo. Initially the piece began with all of the girls running in from either side of the stage and forming two parallel lines. The lines then pulled apart and formed an inverted “V” as Eva came forward in the center and proceeded to spin and jump as she moved across the stage. She was so happy. Arthur sat there transfixed. He felt something he had not felt in a very long time and it felt wonderful.
They stayed a few more days then drove home. As they passed through miles of evergreen forests, Arthur could not help but remember the look on Eva’s face as she danced, pure, unadulterated innocence. He realized that his self-imposed emotional exile was slowly killing him. Time, his mortal enemy, unrelenting and fixed, was winning. He knew he could not succumb to this passive attempt to escape pain. It was time to fight back.
He began to leave work each day at five and started taking Mondays off. He hired a young man who had just finished high school to help out in the shop. The quiet calm that had entombed him for the last year now gave way to incessant chatter from the young man set to the sound track of alternative rock. Justin, that was his name, talked of his dream of someday getting a motorcycle and riding across the country. He was a good kid, and learned very quickly. Soon Arthur felt comfortable leaving Justin alone to work on his own and even close up the shop for him. Arthur wanted to spend as much time with his wife as he could. Things improved in their relationship. They planned more trips together. In the past, when his wife would comment how she always wanted to see the American southwest, Arthur would change the subject or say that he was too busy. Now he acted on her casual comments knowing that they really reflected her true desires. He worked it out with Justin and his carpet cleaning manager, and they left for three weeks to explore the Grand Canyon and Mesa Verde. They created wonderful memories together; memories that, in later years, would surface with an ease that the denser, more painful memories, did not possess.
Things weren’t perfect. She still struggled to get around with her cane and would become frustrated, sometimes at the smallest inconvenience. Sometimes she would snap at Arthur for no reason, at least not any reason that he could surmise. Arthur would think, “Honey, if you only knew how little time we have left together, you would be more patient with me.” This made it quite difficult for him to bare this truth alone, but he would no longer hide from it. In those three years following Eva’s recital, Arthur now felt quite content to accommodate his wife, as he no longer blocked the suppressed dreams that she had carried for so many years. They went to San Francisco for a three day trip as she participated in a culinary master class. She created a grilled Sea Bass with a Dijon and dill sauce that was heavenly. She began to design and create mosaics and soon they were everywhere in the house. Initially the designs had a clear floral pattern, but soon she moved on to abstracts, focused more on color and radial dissymmetry. She stayed involved and Arthur stayed at her side. The last year of her life she began to slow down. Her energy began to wane. Her doctors had no real explanation for it. But she did not complain. Soon, she did not speak of travel anymore, other than to visit her grandchildren. She stopped creating mosaics, but she continued to cook as long as she could still stand. Discouragement or complaining, however, were not part her character. Arthur, of course, knew what was coming. Every morning he would wake up with the knowledge of how much time he had left with her. Should this knowledge cause him to drastically change what daily activities they should accomplish in the short time they had left? Did this extraordinary revelation of his require that their live become extraordinary? They still needed to eat, to bathe, to clean the house; such mundane tasks for such an extraordinary couple. But isn’t that what you do together? Arthur found that the most important thing he could imagine doing was just being with her as he slowly began to assume the responsibilities that had always been hers. The first time in their married life that he did laundry was a disaster, but she guided him through and soon it became routine for him.
The timing of her death wasn’t exact, but Arthur figured (remembering the date of Randy’s death) that there would be a 3-4 week window around when it would occur. As it approached, it became more difficult for her to get out of bed. He would assist her and they would sit in the garden, surrounded by a myriad of potted flowers and herbs, all setting on mosaics of various sizes and shapes. Often the only sounds were that of a small fountain nearby and the many species of birds that had taken up residence in their garden. If his wife knew that she was dying, and Arthur believed that she did, she never mentioned it. She would wake up every day, Arthur would help her dress, and they would spend the day together.
One morning Arthur woke up to find his wife struggling to breath. Not knowing what to do, he took her to the hospital knowing that she would likely never return to their home again. A multitude of tests were done, all inconclusive. The doctors spoke of different possibilities in the differential diagnoses, but Arthur knew that they were baffled and just guessing. She lay there with a green mask on her face which supplied her with humidified oxygen as she spent much of the time sleeping. Fortunately, she suffered no pain.
It was during one of these long sleeping episodes that Arthur experienced a memory. One of those vivid memories of one’s past that might occur when the mind is allow to shift into neutral and coast for a while.
Arthur was 7. Or he was 9? He wasn’t sure. His memory was like patches of blue sky seen through shifting clouds; fading, changing, with new patches of blue revealing themselves as others were lost. He was sitting in the back seat of the car. His father was driving, his mother, or maybe it was his older sister, was in the front seat. They were driving somewhere, they were always driving somewhere, and he was bored. It was a long straight stretch on a two-lane country road. As Arthur pressed his face against the window, he would play this game with his eyes to fight off the boredom. His memory now engulfed him and he was there. As they traveled, there was a long fence separating the road from the farmland along side. As he stared at the fence posts he would see different things. If he looked ahead at an angle more parallel to the road, he could differentiate individual fences posts as they rapidly moved toward him. If he looked straight out the window, perpendicular to the direction of their travel, everything was a blur. As hard as he tried to rapidly move his eyes back and forth, he could not make out an individual fence post. But, there was one particular angle that, if he looked on that one spot. He could see the solid, individual fence posts right at the moment that they were sucked into the blur. He would spend many minutes gazing at the transition. It helped if he let his eyes go slightly out of focus, trying (or not trying) to look at some imaginary point beyond the fence. Arthur noticed something. Just as the post became swallowed in the blur, they were angled. But he could not remember whether they were angled forward or backwards. He would rack his brain to try to determine which way they were angled. He had to know. Somehow this discovery became all consuming. It seemed that maybe this would somehow explain his life. Was he forever falling backward in time or tilting forward? It seemed that he was always caught in the blur. If only he could figure out its direction.
Suddenly, he felt himself in a river. The current was pushing him, or was it pulling him. As the water carried him, he wanted to get out. He saw a large rock to his right and maneuvered himself towards it. He grabbed it with both hands and immediately the current, that had be quietly carrying him, now became a rushing force; pushing-pulling him away from the solidity of the rock. His strength was no match for the force of time whose current would not allow him to stop.
Two days later she gently left this world. Arthur sat next to her bed keeping vigil. During her final hours, he spoke softly to her; reminiscing over the memories that they shared. She did not move. He held her hand as her breathing eventually slowed and then came, maybe one to two breaths in each minute. He stroked her long brown hair as she became still. Arthur waited alone with her for about fifteen minutes, slowly got up, and went home.
Tuesday, June 16, 2009
Kevin R. Anderson, M.D.
Wednesday, April 01, 2009
His words came out almost monosyllabic at first. With each question, it was like trying to pry open an old paint can lid to get a glimpse of the color inside. He was clearly cautious of me, a stranger. I had noticed him recently as I would walk through the park. He was always alone, but somehow he did not seem alone. I was drawn to him, I felt compelled to know his story. One afternoon I summoned the courage to approach him. As I neared the bench where he seemed perpetually stationed, I first noticed his face. He was not looking at me, but off into the distance beyond the creek. His face belied that of a man who appeared older than his years, but not old. I could not guess his age. It was almost as if each line in his face told a story, as story that contained his entire life, worn for everyone to see, yet no one to notice.
As I came near to sit by him he looked up at me; there was no surprise or annoyance at my interruption. His countenance seemed to welcome me, even if uninvited; it seemed that I was expected. I introduced myself and asked his name, “Arthur”, he responded. He looked up at me and I first saw those eyes. They didn’t seem to fit his face or anything else about him. They had the youthful fire of a 14 year old boy. And even as he looked directly at me, regarding me tightly in his attention, those eyes seemed to simultaneously look beyond me as if he saw something grand off in the distance. I was almost tempted to turn around to see what he was looking at, but I knew the gaze was not toward anything physical.
We began to talk, but not small talk. It was as if words were too precious to him to be wasted on idle chatter. He asked me some pointed questioned about who I was and what I did, not as an inquisitor, but as if he genuinely wanted to know me. I embellished a little too much about my accomplishments and feigned some sense of importance beyond the reality of my true self, but he took each response as sincere and un-judged.
Finally, as that train of conversation lulled, he became quiet again and looked off over the creek. Then I asked, “What about you, tell me about your life.” He turned quickly and again those eyes tracked me. With a slight squint he studied me, as if it was the most important thing ever, he studied me; seeing whether I could be trusted. Finally, not quite convinced, but rather committed, he began.
“What I am going to tell you, I have never told anyone else in my life. Not even my wife, you understand, not even my wife.” The last ‘my wife’ he added with powerful emphasis. “But it doesn’t matter anymore. I am at the end and it seems somehow more appropriate to tell you, a stranger, than anyone else.” And thus he began to tell me about his ‘ability’.
At the age of 21, Arthur had an ‘experience’. He apologized that he had not a better word to describe it. A religious man might have called it an epiphany. He just referred to it as the experience. One day he woke up and knew two things. First he knew that he had the ability to give seven years of his life to another person. It had to be volitional, never accidental. But he knew with complete certainty that he could do this. The second thing he knew was that he would live to be 84 and then die. He would not die until 84, unless he gave some of his years to someone else.
Arthur had no idea where this ability came from. Could it be from heaven, could it be hell, karma, the universe? He had no idea. At that time in his life he wasn’t a particularly religious man. He thought there might be a God or some enlightened influence out there, but he had no real inclination in the matter. He had just gotten married and was struggling to start a new carpet cleaning business. His wife was pregnant with their first and ultimately only child. This revelation caught him completely off guard. He tried to imagine that it was only fantasy, but he knew otherwise. He could not deny it, no matter how hard he tried.
The fact that he knew he would live to be 84 was strange to him, but at that time did not really bother him. At 21 you still think you are immortal anyway, however, that nonchalant approach to the weight of knowing the definitive date of your mortality would drastically change over time. Arthur was not a reckless man, so there was never any temptation to do something foolish in an attempt to intervene with fate.
He decided to just keep this knowledge to himself and hope that he never had occasion to use his ability. And so it seemed for some time.
His son, Randy, was born a few months later and life went on. He worked hard at the carpet cleaning business and eventually built a stable client base. He hired assistants and eventually a manager. He was not a rich man, but careful with his money and eventually leased a small shop in a strip mall and opened a small engine repair business. He loved tinkering with things, and while working on engines, there was little need for conversation. He and his wife were happy. Randy was doing well in school. And there were times when Arthur forgot that he ever possessed that ability.
Randy was a big kid, by age 14 he was taller than Arthur by 5 inches. He loved all kinds of sports, but especially wrestling. As a freshman in High School, he was already on the Varsity Team and only got better from there. Arthur attended all of his meets, even when they went to State. He was very proud of Randy and he kept all of the local news clippings of the meets stapled to the wall of his shop and was quick to point out Randy’s prowess to any customer that might be lingering near the wall.
Then the unthinkable happened. Randy was in his senior year and at a meet at another high school in the county that would determine who went to State. Everyone expected Randy to win. Arthur was there in the stands and Randy had done well all day. In his final match of the day, he was paired off with a lanky young student from the rival school. They were in the same weight class, but his opponent was a full two inches taller than Randy, and all arms. Somehow, in one of the moves, Randy was flipped over and landed on the back of his head and neck with the full weight of the opponent on top of him. There an audible snap and Randy went limp.
The room was silent. The opponent got off backing away with his arms waving frantically as if indicating, ‘It’s not my fault, it’s not my fault’! The coach and trainer were immediately at Randy’s side, not knowing what to do; they seemed to yell at him, “Can you move, are you OK?” But Randy could not move. Randy could not even breathe. He was awake his eyes filled with terror, as Arthur raced to his side in the confusion nobody even noticed that Arthur was there. Arthur cupped both of his hand around Randy’s limp hand and he said, “Son, I am here.” He then let seven years of his life slip into that of his son’s. Randy felt a gush of air enter his lungs and just said, “Dad.”
Randy never wrestled again. He did, however, recover completely. Ultimately, the coach and trainer just figured that he had the wind knocked out of him and left it at that. The truth was that he would have been dead within 4 minutes had Arthur not been there to use his ability. What happened, and no one would ever know, was a neck fracture between the 1st and 2nd cervical vertebrae. The bones subluxed and completely severed his spinal cord at that level. It is commonly known as a ‘Hangman’s Fracture’.
Arthur was, of course, thrilled that his ability had worked. Although he never had any doubt that it would. But there was so much that he didn’t understand. Would those seven years just be added now to a normal life span now that his son was returned to normal health? Or was his death a given, a predetermined event that had only been delayed? He pondered this for some time, but no answer came. He could only hope.
Randy finished high school and went to college at the University of Washington to get a degree in business. After his first year, he came home and married his high school sweetheart. A year later, Eva was born. And then 18 months later, along came Mark. Arthur absolutely adored his grandchildren, but there was always a special place in his heart for Eva. Her smile always reminded him of his wife. Eva was always happy and quite gregarious. He spent what time he could with them, even though they were so far away. Randy finished college and opened an insurance agency just outside of Seattle and did quite well.
Normality had resumed in their lives and Arthur had stopped wondering at what might happen. He just assumed that things would stay as they were and he lost himself in his work. Time passed.
It was a Thursday when the call came. Arthur was in the shop replacing a carburetor on a lawn mower when the phone rang. He briefly wiped his hands on an oily rag, succeeding in smearing the grease in a more even fashion. But, it didn’t matter; the phone was black with grease anyway. “Arthur!” his wife exclaimed as he picked up. He immediately noted the tremored fear in her voice. “Arthur, Randy’s in the hospital, they tell me he is really sick, it seems he fell in a river, I don’t know, it’s… can you come home?”
Her voice was frantic; she couldn’t seem to get the words out. “I’ll be right there, honey, just hold on.” Arthur thought as he drove home, Randy is 25, it had been seven years, is this it? Is it fixed in time, is there no leeway? His mind raced for an answer, a solution, he was good at fixing things, could he fix this?
They were on the next flight to Seattle and soon at the bedside of their ailing son. He lay there unconscious, unaware, on a ventilator, helpless.
Randy and a friend had been fly fishing in Montana. It was their second day out and the fish were biting better than the day before. Randy had caught two bass, his friend one. He loved the outdoors and spent what time he could in the wilderness. This was his second year making the trek to Montana and he hoped to make it an annual tradition. His friend suggested they move upstream where he spotted a small eddy. As they moved upstream, Randy lost his footing on a mossy submerged rock and fell backward. He hit his head and felt this immediate burning on his scalp. Disoriented he tumbled over in the stream, but his foot got caught between some rocks and, as he struggled to free himself, he found he couldn’t roll upright to breathe. He arched his head sideways as best he could to gasp for a breath but only found water there with a strong iron taste. What seemed like an eternity was only about ninety seconds. All at once, he was lifted out of the water by his friend. Coughing and spitting out river water, he could finally breathe. He put his hand on the back of his head and it returned covered in blood.
First aid was a clump of gauze pushed onto his scalp laceration that they had found in an old first aid kit that was in the truck. It only took five stitches at a nearby 24 hour medical clinic to control the bleeding. That night Randy and his friend joked about the whole ordeal, but they both knew it was time to head home and they cut their trip short and started the drive back to Washington. It was a twelve hour drive.
About two hours outside of Seattle Randy vomited. His friend asked if they should find a nearby hospital, but Randy said he was OK and they pushed on. By the time he arrived home he was weak and had a fever. His wife took one look at him and said that she was taking him directly to the hospital. Randy had called ahead and told her about the entire experience. He had assured her that he was fine and not to worry. But a wife knows, and she had been worried for the last ten hours. Her worry now turned to panic.
By the time they got to the emergency room, Randy’s breathing was labored and his pale face was covered with a mask of sweat. An hour later he was in the ICU on a ventilator. In those few seconds in the stream, he had aspirated water into his lungs and now had developed pneumonia.
Arthur and his wife sat there quietly as the only sounds in the room were the mechanical bellows of the ventilator keeping their son alive. Arthur imagined the sound as if it were coming from a giant grandfather clock, each tick, each breath, bringing him closer to the hour; but which hour? Was this the final hour? But time could not hear his silent pleas. Time is harsh, it is relentless. Arthur knew Randy would not recover. He thought about those seven years that he had lost and Randy had gained. But had he really lost them?
Randy’s condition worsened. His pneumonia was complicated by meningitis. A week later he died.
As Arthur related his story, I became aware of something I had never noticed before in any other person that I had spoken, or rather, listened to. It almost seemed as if he considered each word carefully before he uttered it. Each word was weighed for its value before insertion into the flowing stream of vocalization. The word alone then had to be placed in the right syntax with attention to vocal pitch, cadence, non-verbal/facial support and moments of silence. However, Arthur did this with such alacrity, that there appeared no awkward interruption or halted nature to his speech. It almost felt like a song.
Upon noticing this natural yet superlative form of speaking, my mind wandered to how different the use of words was in my daily life. Words were everywhere, but most of them useless. In my office, people are constantly talking, yet say very little. They complain, opinionate, gossip and judge. At my desk, I am inundated with email, few of which are actually written specifically to me. I am listed, copied, forwarded, replied and marketed. To open the internet is to dive into billions of words where the veracity of any given string of word combinations is difficult to ascertain. World events are reported instantaneously around the globe and the human animal, not yet evolved to process so much information so quickly, instinctively falls back into reaction mode. People don’t process anymore, they react. This is dangerous, for decisions made in this environment rarely look at the long term consequences. This is fueled by the voracious appetite of the media to fill its vacuum of airtime with content. Any content will do. Truth and facts are only tangentially required and usually biased or out of context. Spice it with emotion or fear, and you have a show. Thus perpetuating ever more words, reactions, words that fill every aspect of our conscious existence. We can hardly remember silence, or don’t know what to do with it when it suddenly arrives. I felt myself thrown into this sea of words, adrift with no direction, as a whirlpool formed beneath me sucking me down, when it became suddenly silent.
...to be continued
Monday, June 15, 2009
Soon it will be one year since Barbie and I began this website. At the time, I had no idea the impact that this endeavour would have on me. The wonderful feedback that we have received has carried us through some tough times. I remain unaware of its total readership. Some have suggested putting a counter on the site to see how many 'hits' we get. However, there is some bliss of ignorance as I assume there are only a small number of intimate friends reading this. Thus, I tend to write without self-censoring.
I wish to thank you faithful followers of our remarkable journey with a small token of gratitude. I want to share a story that I wrote. The kernel of this story of fiction came initially in a dream that I had while in the hospital for the stem cell transplant. As I awoke and lay there in the dark, the kernel took root and begin to grow into the story that I now share. Ultimately, it took over my waking thoughts in those quiet moments as one tries futilely to fall asleep. The only solution was to write it down.
I will post it in five chapters; the first chapter tomorrow.
I hope that you enjoy it.
Wednesday, June 10, 2009
Kevin R. Anderson, M.D.
June 5, 2009
It is a great honor for me to be able to return here to Yale to celebrate the life and career of Dr. Bernie Lytton. As a young faculty member here, Bernie was always a friend and a mentor. When one considers the process of becoming a doctor, it takes years to get where we are. Our education begins in college and medical school; followed by prolonged training in residency and fellowship in our chosen field. We continue to learn as we practice and study and research. This process never ends.
Contrarily, there is no such preparation to become a patient. It is abrupt, awkward and ultimately unsettling. All that defines us as physicians and surgeons is lost when we become ill. Namely, we lose control. Normally, in our ordered lives we call of the shots. As a patient, we are completely dependent on others. This transition is not an easy one.
May I share two examples which illustrate this on my own journey. Last year I was diagnosed with restrictive cardiomyopathy and primary amyloidosis. To confirm the diagnosis I underwent a right heart catheterization and cardiac biopsy. Afterwards, still lying on the fluoroscopy table, with a cordis in my neck, the cardiologist informed me that my cardiac index was 1.7, half of what I should normally be pumping. She suggested that I be admitted to the unit for a continuous dopamine infusion while I wait for the work-up to be done. My immediate thought was that dopamine is what we give really sick patients in the unit that are ‘circling the drain’. I certainly wasn’t that sick. My second thought was that of my work schedule. I had a full clinic the next day and many surgical cases the following week. She understood. I hadn’t yet become the patient. I then asked, “Will I need a heart transplant?” Her unexpected answer hit me like a sledge hammer. “Only if you are healthy enough,” She said.
She left me alone on the table to answer a page. As I lay there alone, I realized for the first time in my life the literality of my own mortality. It was as if someone had turned on a light and I could see the door at the end of the tunnel. Life, now, had an expiration date and death was on the calendar. I silently wept.
The following week, I was sitting in my office. I had just done two cysto cases and was waiting to return to the OR to do a percutaneous stone case and, finally, the laparoscopic nephrectomy that I had had to cancel from the week before because of my biopsy. The phone rang and it was my cardiologist. She simply informed me that the biopsy was positive for primary amyloidosis, kappa light chain type, involving my heart and that I would need to stop working immediately. As I thanked her and hung up it was as if my heart were already ripped out of my chest. This emotional pain was far worse than any physical pain that I would ultimately feel a month later when my heart was physically removed. I have always been defined by my responsibilities to others; I was lost not knowing who I was. But I still had work to do that day. I wondered if my fragile emotional state would affect my ability to operate. But as you all know; that is when the years of training kicks in. Whatever you are feeling, when you walk into the OR you leave your life outside as you focus on the task at hand. The case went beautifully. As I spoke to his wife after the case and explained that the tumor was contained. I realized that this man would now live longer than I would. But that was not a sad thought. It was oddly reassuring.
As I walked away, I became a patient fulltime. To be a patient is to wait, to wonder, to be poked and tested repeatedly, to be tired all the time, to silently be afraid, to feel alone in a crowd, to submit, to trust your doctor implicitly, to wait some more, to leave your family and friends behind, to be cut open, to be poisoned. To be a patient is to always hope even when no one knows the answer. To be a patient is to cherish the beauty of the moment.
The doctor as a patient has the special challenge of never second guessing your own doctor, to be completely compliant, even when you might do it differently. I avoided telling people I was a doctor so that they would not change their normal routine or protocol. To demand being treated as a V.I.P. is to risk sub-standard care.
Many people have asked me if I have learned anything from this experience and if I would be a different doctor to my patients. I have been changed profoundly. First of all I am extremely grateful, and the only way I can repay the gift I have been given is to give back. From the day I left my goal has been to return to work. This I will finally do in 2 weeks.
All patients, regardless of the severity of their condition, need three things. First, they need to feel that they are being heard. This is difficult as we often minimize or dismiss extraneous symptoms that to us seem irrelevant to the diagnosis at hand and explain them away as benign. We must train ourselves to accept their report with the weight that they assign it.
Second, a patient will never leave my office without hope. Not false hope, but hope in something that together we can do to extend either the quantity or quality of their lives; even if it is only to achieve a personal goal within the next two weeks. The quality of their life is directly proportional to the degree of their hope.
And lastly, I will remember than many patients feel very alone in their illness. I can help them by showing them examples, or introducing them to others who have overcome similar challenges.
I have been very fortunate to have outstanding doctors, caring nurses and friends and family who have supported me. But there are no words to describe the constant companionship that is the love of my life, my wife, Barbie. I owe her my life.
We surgeons are not usually a self-reflective group. We prove things by randomized double blind studies. Sometimes we are blind to the impact of our own life. Even though my life expectancy now falls below the mean, median and mode. I find a symbolic life extension as I reflect on the lives, that through my efforts, have been increased in years and those years filled with quality. Equally, I find the same fulfillment in having had the privilege to teach others, medical students and residents, this same art.
By this accounting, Dr Lytton, the consummate physician, surgeon and professor, should be near immortal. To all of you I give my heartfelt thanks. I am truly a lucky man.