My Illness — from My Daughter’s Eyes
How do you tell your child that you are dying? This is a tortuous question for any parent, but it is especially anguishing for those whose children are too young to grasp the finality of death. Children, I say. Well. Should I pretend I have a clear grasp on the finality of death? I hear talk of light too bright for the eye to behold. Of heaven, of hell. Of a darkness unknowable. There are things the mind simply cannot fathom.
What, then, can I expect my eight-year-old daughter to fathom, let alone my four-year-old? What can I tell them – what will I tell them – when that horrible moment forces itself upon me like some implacable beast from a dream?
I found myself back at our hospital, Johns Hopkins in Baltimore, on a semi-emergency Wednesday. Over the course of the past month or two my breathing has deteriorated to a point where walking up a flight of stairs results in several minutes of unquenchable coughing and rapidly restricting airways. It can be easy to lose yourself in an airless panic. As a kid with asthma, I experienced similar attacks from my bronchial infrastructure, the way the bronchial tubes, the branches of bronchioles, would swell up and block the exchange of oxygen. Your natural response is to breathe harder, as if you’d simply run some sprints and needed extra gulps of air. Gasping for more air made the swelling worse, however, a cruel trick of nature. Nor did it do a thing to facilitate the exchange of gases, of oxygen and carbon dioxide, the process we know as breathing. My father taught me to do the opposite of what seemed natural for a young boy. We’d sit on the bed or couch – I’d lay, he’d sit – and concentrate. He’d talk softly and I’d concentrate on the sound of his voice rather than the words he said. And slowly I’d lose the urge to breathe harder and faster and instead would veer to a conscious physical mellowing, a waking sleep with the breathing coming in steady, slow rhythms. Then, eventually, real sleep would descend.
At 44 I have built upon the lessons of my father with lessons from my daughter, an expert in all things zoological. She has taught me a great deal about sharks, for example. When she was about 4 years old she informed me that if I were to be attacked by a shark in a pool there would be no use in trying to talk my way out of it. Sharks don’t speak English. She has since taught me about lizards, snakes, turtles and crocodiles – all things reptilian. From her lessons, I’ve learned to turtle when I face the natural urge to gasp deeper for air. Turtles are very Zen creatures. Faced with a threat, they retreat into their shells, block out everything and seek strength and calm within themselves. You can kick them around, your dog can scratch and bark at them, your children can roll them down the slope into the creek. None of it matters to the turtle. You can’t break him. He remains cool and collected in his scratchy dome of shell. I try to copy him – sans the helpful shell. I sit back on my bed and relax my body to the extent that I can. I block out everything else, pulling an invisible dome about me. I hear nothing. Not the noise of that vacuum downstairs. Not the hum of the television. Most of all, not the cacophony of my thoughts. I shut these down with the discipline of a field commander. I focus on one thing: Relaxing my body – my stomach, my arms, my shoulders, my chest. I physically take control of my breathing, pulling back from the panicky-quick gasps for air and slowly, if shallowly, inhaling and exhaling. Soon enough, my normal pattern of breathing returns, and the incident passes. Only, the incidences were occurring more and more. My invisible dome was developing cracks.
My wife, Dena, had been wanting to schedule an appointment with my oncologist, Dr. Hammers, for some time now. Whether it was my restricted breathing or my turtle imitation that freaked her out most, I can’t say. We talked of moving up the date scheduled for my CT scan from Nov 8 to … sometime sooner. (That’s the best you can hope for with hospital administers and bureaucrats: sometime.) We didn’t have a clear plan as to what we would do if the scans were negative. I didn’t feel that my breathing had reached a point of requiring emergency care. And I wasn’t ready to give up on Afinitor, though in my heart I knew it wasn’t working, and turn to yet another drug that also probably wouldn’t work either.
Instead, I put Kate to bed and lay down with her to read her nightly bedtime story. Being Halloween season, I was reading Spooky Buddies, a tale about a remarkably politically correct and culturally diverse group of sibling puppies that take on an evil, if somewhat daft, wizard and his big-jowled Halloween Hound who want to take over the world and, well, do whatever wizards and hounds to do to the world once they have succeeded in their dastardly plans. As I read, however, I found myself unable to complete the sentences on the page. The harder I tried, the worse it came out. I began to sound like a bad actor that has just been gut-shot and needs to whisper in the ear of his companion – because, in the movies, you always have those last sentences left in you no matter how badly you’ve been shot. Fred, I just. Just want to say. I need. You to. Need you to look after my. Pet lizard. He keeps losing. His tail. The end result was that my reading was scarier than the Halloween story. Kate finally stopped me and told me I could rest for a minute. We laid there for a few moments while I caught my breath, no dome of protection. Only Kate’s hand in mine.
I went into my bedroom and asked Dena to please finish the chapter for Kate. And then I said, yes, I guess it’s time to talk to the doctor about moving up the CT scan. Maybe just after Halloween.
The next day I got a call from Dena at her office. Dr. Hammers wanted to see us immediately. After hearing the symptoms, he feared pneumonitis. Pneumonitis is an inflammation of the lungs that can severely restrict the airways and is among the top 15 causes of death in the country. It is also a potential side effect of Afinitor, and Dr. Hammer’s had had bypassed the bureaucracy and moved our entire regimen up to the next day: bloodwork, labs and CT scan. The rapidity with which he moved was unnerving, but in a way I hoped that I did have pneumonitis. It would mean that there was probably a drug regimen that would relieve the condition. The only alternative was that the disease was closing in, and for some days now I had begun to fear that was exactly what we were facing.
With CT scan in hand, Dr. Hammers walked into the examining room and informed me that I had a solid case of pneumonitis. I was to quit the Afinitor immediately. He wrote a prescription for antibiotics in case it had become infectious, as well as a prescription for steroids to make me agitated and piss off everyone in my family. (Well, he said it was to ease the inflammation in the lungs.) And, finally, he ordered oxygen. This, he said, would help with the breathing and ensure that oxygen was actually making its way to my brain. There was some evidence that my brain had been deprived, as I spent much of the day at the hospital working in obscure cultural references from the 1980s. Can we ever find the exit lane to Electric Avenue or forget Jenny’s number from the bathroom stall? (It’s 867-5309 for the Tweeters out there.) If you can answer yes, then your heart is colder than mine. At times, Dena confused my cultural hilarity with the possibility that I was about to faint. She kept asking me if I wanted to sit down. She’d look in my eyes to see if they were focusing. Bueller? Bueller? Bueller?
When Dena opened the door to take Kate to school, my mother asked her what time the oxygen company would deliver the tanks. Dena made one of those faces meant to say, Let’s talk about this when I get back, not in front of Kate but in reality said nothing at all, other than possibly My god, I’ve got a piece of pencil led stuck in my eye. There was a cool October chill in the air that came in through the door, and I watched them cross the street and head off toward the school. As they turned the corner at the end of the street, Kate stopped and asked Dena why people were delivering oxygen to the house. The question was not posed: What is oxygen and why do we need it. It was posed: I know Daddy’s sick. I know what oxygen means. Why are they bringing oxygen to the house? Kate had watched her great-grandmother die with oxygen tubing wrapped through her nose. She couldn’t have been more than five years old at the time but she was very fond of Dena’s grandmother, who was the archetype of the white-haired kindly old woman full of hugs and warm words, always working on a batch of oven-hot cookies. Whenever Kate has confronted death in her life – be it a sad death in a movie or the death of a pet – she has invariably fallen back to losing her great-grandmother. The result has always been an inconsolable grief that only time could cure. Wherever there is heartbreak in Kate’s world, there is her great-grandmother leaving for another world.
Dena looked down to Kate with no little anxiety and told her that the oxygen was to make me feel better. It would help with the coughing, she said, as that was something to which Kate could relate. Lately, after one of my coughing fits, she has taken to saying, “Cough you” – a kind of bless you for the coughing crowd.
“I don’t like it in the house,” Kate said.
“Don’t you want Daddy to feel better?”
“I do. Of course I do.” She stood silent for a moment and then looked up at Dena. “I just don’t want it to mean anything.”
Dena found herself unable respond. She knew what her daughter was telling her. Kate wasn’t asking any questions. She wasn’t asking whether the oxygen meant anything. In her heart she knew it meant something. In her heart, she held on to the memory of her grandmother. It wasn’t a question at all but a declaration.
Dena looked at Kate for a moment longer. “You can ask me anything you want,” she said, terrified of the question she knew was coming. She had so few answers. She and I had spent hours and hours discussing how to communicate with our children about what lay ahead and yet we were not closer to answers than Job.
But the question didn’t come. Not exactly in the form we have most feared. Not yet.
“Why is this happening to my daddy?” she asked.
“I cried,” Dena told me when she got home. “I just opened up and cried, right there in front of her.”
Other mothers and fathers were walking their kids to school, speaking of Halloween projects or tests that were approaching. Fallen leaves swirled everywhere on the sidewalk. The sky was gray and the light was low and the air was chill and everything that made Dena despise Fall because it only led to long dark days of Winter seemed to come bearing down on her.
And then the moment passed. Kate had no more questions. She didn’t want to talk about it anymore and walked on quietly for a while. The thinness in the air seemed to lift and, in the resilience of children, she began to discuss her Halloween project. She was going to need some glue and some more colorful paper. Her project was going to be spooky; it had to be spooky, she noted with the air of a movie director. That, after all, is what Halloween is about.
The air lightened just a bit, at least for a little while.