Imagine living with a machine that controls your emotions. The machine is not some kind of automated Dr. Feelgood enabling you to program your preferred mood each day. You do not control the machine. The machine controls you. During the day, it sits on the end table by your couch and at night it is several feet from your bedroom door. You must always remain within hearing distance of its alarms.
The Emotion Machine has a small, digital display panel with numbers on it. When the displayed number hovers in the mid-90s, you feel pretty good. You don’t get too ecstatic because the number could slip at any moment and not go back up again. You have been conditioned by past experience to not get too hopeful. If the number goes above 95, you start to relax and your outlook improves. If it stays in that range, you begin to breathe a little easier. The tight ball of stress that resides in your chest loosens up and your breaths get a little longer and deeper. If the machine reads 100, you are ecstatic and feel like confetti and colorful balloons should fall from the ceiling.
When the number drops below 94, a wave of panic washes over you and your heart rate quickens. Conversation slows to a minimum. You are sad that the number has gone down, but try not to focus on it too much. You step away from the machine, put the dishes away, switch the laundry, do anything, and hope that the number edges back up by the time you return. If the number stays below 94, you feel frustrated and that frustration sometimes sours into bitterness. The volume of your inner dialogue increases. “What did we do to deserve this?” “What are we doing wrong?”
The most dreaded number is 91. When the reading is that low, the number begins to flash on and off and a jarring, high pitched alarm begins to sound. You can silence the alarm, but only for 40 seconds, not long enough to run to the bathroom, maybe just enough time to refill your water glass. If the number does not rise above 91, the alarm comes screeching back on. The alarm keeps you on edge. There is no time to do any distracting chores now. You have to stay within arm’s reach of the Emotion Machine so you can silence the alarm when it goes off. If the number does not go back up, you may end up back in the hospital and you will have to stay there until the numbers return to an acceptable level.
You can never turn the Emotion Machine off. If you did, your loved one might receive insufficient Oxygen to the brain or even suffocate. You fantasize about smashing the machine to pieces with a baseball bat. You believe there was a time before you lived with the Emotion Machine, when you could cheer yourself up by calling an old friend or watching a cherished movie, but you can hardly remember what that felt like. These interventions are powerless in the presence of the Emotion Machine.
The Emotion Machine is real. It is not taken from the pages of a science fiction story or dystopian novel. It is a piece of home medical equipment called a Pulse-Oximeter that my wife Courtney and I lived with for almost two years. We needed it to monitor our daughter Lucy’s blood oxygenation level and heart rate from the time she came home from the Beth Israel NICU in November 2014. Lucy has Broncho-Pulmonary Dysplasia, also known as Chronic Lung Disease, as a result of her extremely premature birth. She came home from the NICU requiring 24/7 Oxygen support, a feeding tube, and a Pulse-Oximeter. She also came home at the worst possible time: the start of cold and flu season. It turned out to be an incredibly rough winter. Lucy was admitted to Children’s Hospital just ten days after leaving Beth Israel, the first of four admissions between November and February. When she wasn’t in the hospital, we were at home in preemie prison, eyes obsessively fixated on the Pulsox, fearing she could fall apart at any moment and end up back at Children’s. It was during this time that I first wrote about the Emotion Machine.
We made it through that first winter, but our hope and expectation that Lucy would come off Oxygen by Spring were dashed. She still had a long way to go. After many fits and starts, we were finally able to wean her off Oxygen during her waking hours in September 2015. During a clinical visit, Lucy’s pulmonologist said that going forward we could just spot check her. For the first time in Lucy’s life, we turned off her Pulsox. It felt liberating and surreal, but also scary because we were so conditioned by over a year of continuously monitoring her.
Lucy’s next hurdle was getting off of Oxygen while sleeping. We still had to put her nasal cannula and Pulsox back on when she went down for naps and again at night. We conducted a sleep study off Oxygen, but her lungs were still not strong enough. Her pulmonologist decided to play it safe and kept her on nocturnal Oxygen through the winter. In early Spring, we did a second sleep study. She didn’t pass, but she was getting closer. A few weeks later, we tried again and she came incredibly close to passing. Her pulmonologist said he was comfortable pulling the Oxygen, but it would be like quitting the marathon after running for 25 and a three quarter miles. She had turned the corner of Hereford Street and we all agreed she had to run the last half mile down Boylston and cross the finish line. A few days later, we did a fourth sleep study and received the results. She passed. A year and a half after leaving Beth Israel, she had crossed the finish line and was cleared to come off of Oxygen.
It was the first week of May. We felt we might possibly get the Spring and Summer we had hoped for the year before. Lucy was liberated from her nasal cannula and we were finally liberated from the Pulsox. With her pulmonologist’s approval, we put Lucy in her first play group. We felt it was important for her to play with children her age, but this was the first time we felt her developmental needs outweighed the health risks. We looked forward to Lucy’s Dedication, which we hoped would be a joyous celebration of Lucy’s progress and an opportunity to express our gratitude for all the support we have received from the community here, our First Church family.
And yet it was not meant to be. A week after coming off Oxygen, Lucy began developing some nasal congestion. After two days, she appeared to be struggling. We attached the probe to her toe and turned her Pulsox back on. She was not maintaining her minimum Oxygen saturation level and we had no choice. With tears rolling down her cheeks, Courtney placed the nasal cannula back in Lucy’s nose. It had been nine days since she was cleared to come off Oxygen and almost nine months since she last required Oxygen while awake.
With the help of our home nurses, we executed our sick plan of albuterol, nasal suctioning, saline nebulizer treatments, and chest PT, but it proved to be a losing battle. She had to go back to Children’s. Our expectation was that she would be placed on the pulmonary floor, where she was well known by the doctors and nurses, and the 24/7 medical care would help her fight the cold and come off Oxygen again.
But within two days, Lucy began to fall apart. She was transferred to the Intermediate Care Program and given high flow Oxygen through a nasal mask. The attending physician was either in her room or nearby checking in at all times. The nurse kept cranking up her Oxygen support: 6 liters, 8 liters, 10 liters, 12. When she reached 15, I asked how high they could go. “Technically 20,” the nurse said. Lucy seemed to be holding steady until she started drifting to sleep and all the air meant for her lungs began escaping out of her open mouth and her numbers started dropping into the mid-80’s. This wasn’t safe. We alerted the attending and urged her to do something. There was a frenzy of activity as Lucy’s room filled to capacity with medical personnel. She was rushed emergently to the Intensive Care Unit and placed on BiPAP with a full face mask. She had not required this level of support since her admission in December 2014. If BiPAP did not open up her lungs, she would have to be intubated for the first time since she Day 20 of life.
We had already cancelled Lucy’s Dedication service, which had been scheduled for May 22. We spent that Sunday with Lucy in the ICU and I posted the following message on my Facebook page:
An emotional day following a challenging two weeks. We should be getting Lucy dressed and ready for her Baptism, a celebration with friends and family of all she has accomplished, her fighting spirit, finally getting off Oxygen support, and getting through the winter without so much as a cold. It seems like a cruel joke now. Instead, we will spend the day at Children’s Hospital, where she has spent the last week in the Intensive Care Unit battling pneumonia, her 219th day in the hospital since birth.
Courtney and I were not surprised Lucy ended up at Children’s, but we were shocked by how far back she fell. I keep thinking of the Myth of Sisyphus. We had never pushed the boulder so far up the mountain. We had not gotten to the top yet, by far, but we had certainly come a long way in terms of pulmonary health (while still pushing the boulders of eating, speaking, and walking). Last week, as Lucy required more and more Oxygen support and the ICU team raised the possibility of intubation, that massive stone came rolling down the mountain and nearly crushed along the way.
The Myth of Sisyphus. From where in my memory bank did that story spring? I do not know precisely, but in that moment I was taken back to that ancient Greek myth and its iconic image of a man struggling to push an immense boulder up an impossibly steep incline.
In our second reading, we heard an excerpt from The Myth of Sisyphus, an essay by the Algerian born French philosopher Albert Camus. I had never read this book until a friend recommended it after reading my Facebook message. As it turns out, what most interested Camus about this myth was the moment after the stone has fallen and Sisyphus must make his way back down to the plain to resume his ceaseless work. “It is during that return,” he writes, “that pause, that Sisyphus interests me…. That hour like a breathing-space which returns as surely as his suffering, that is the hour of consciousness. At each of those moments when he leaves the heights and gradually sinks toward the lairs of the gods, he is superior to his fate. He is stronger than his rock.”
This was the precise moment when I took to writing about and sharing my emotions. The boulder had rolled down the mountain. Lucy was starting to recover from pneumonia and Courtney and I had a moment to pause and reflect on what we had just experienced. I ended my post on a positive note:
Lucy is feeling a lot better and seems to be on the road to recovery. We hope to move out of the ICU today and back down to the pulmonary floor. Her beautiful smile, which we did not see for over a week, has returned. Her perseverance, courage, and feisty will to survive inspire us every day and this day is no different. It is a sad day of loss, and I accept that. It is also the day we begin to push that boulder back up the mountain.
At that moment, we knew that Lucy was stronger than her rock. As a family, we were stronger than our rock. As a beloved community of caring and mutual support — with phone calls of concern, Facebook messages of hope, dinners brought and shared in the family room of the ICU — we as a beloved community were stronger than our rock.
A few months ago, I had a long phone conversation with an old friend with whom I had fallen out of touch. We had a lot to catch up on and, in sharing some of the events of the last two years, I made the following statement: “I wish I could snap my fingers and make all of Lucy’s health problems go away, but I would not do it if it meant that all we had experienced had to be erased like they had never happened.” This was not an assertion I had ever made before. It was not even a formed thought in my mind before it escaped my lips. It came right from the heart. But was it true? I’ve spent a long time pondering that question and have roundly concluded that it is true, that it must be true.
What Lucy has experienced is her story. It is what makes her Lucy. It is our family’s story. I would not trade it in, even with all the fear and anxiety it entailed. For even in the midst of that suffering, there has also been profound joy. I would not give up the friendships we have made and maintained with our NICU family who cared for Lucy during her most precious hours and days and nurtured us as parents. I would not give up the opportunity to know and learn from the incredibly dedicated mothers and fathers we have met through the NICU and through our support group for parents of children with complex medical needs. I would not give up Lucy’s incredible Early Intervention team or the countless laughs and triumphs we have shared as we worked together to help Lucy learn to stand and walk independently, communicate with spoken words and signs, and eat and drink by mouth. I would not give up the sheer joy we have experienced when Lucy reaches a new developmental milestone, not when expected, but only after months of painstaking work, perseverance, and patience.
In our first reading, we heard a passage from Dr. King on the need to react to suffering, not with bitterness, but by transforming it into a creative force. Our personal ordeals, he asserted, present us with the opportunity to transform ourselves and heal the people involved in our tragic situation. Both King and Camus were saying something deeply profound: that it is through our struggles and in our suffering that we achieve our humanity.
Camus concludes his essay by leaving Sisyphus at the foot of the mountain because, he observes, we always find our burden again. Even as he prepares to take up his rock and begin his ascent, his struggle itself “is enough to fill his heart. My Facebook post said nothing about Lucy getting off of BiPAP or her Oxygenation levels improving. Instead, I simply wrote that Lucy’s beautiful smile had returned. That was enough to fill our hearts. This is how it has been from the beginning. In spite of all the challenges she has faced, Lucy’s spirit has always been one full of happiness and her joy spreads to all those who meet her and get to know her.
Camus left Sisyphus on the foot of his mountain and that is where I will leave you: in an ICU room on the 11th floor of Children’s Hospital where one evening, amidst alarms and wires, monitors and medical equipment, a family of three is sitting on colorful floor mats playing with borrowed toys while a mother and father relish with delight because their daughter’s smile had returned.
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