categories: Cocktail Hour
We are lucky to have this beautiful essay on facing death by my former student and current friend, Tara Thompson.
“Sometimes you wake up. Sometimes the fall kills you. And sometimes, when you fall, you fly.”
—Neil Gaiman, The Sandman, Vol. 6: Fables and Reflections
The doctor shows it to me on my CT scan as I prop myself up in the bendy, mechanical hospital bed where I’ve spent several consecutive, restless nights with an IV trickling into my veins. You see, here, he points to the computer screen, that’s fluid, which isn’t good, and this is where most of the damage is, scar tissue in your upper lobes. (I’ve been told already by other doctors that this recent lung disease is probably from the chemo and radiation I had years ago for my former disease: leukemia. How many diseases must one person have?) The pneumonia is colonizing here, he says.
Colonizing? I think that was the word he used. With the IV Dilaudid, Phenergan, and antibiotics coursing through my body, I visualize a colorful map of the thirteen original colonies and images of Pilgrims and Indians fighting each other. These lungs I am viewing stand alone on a textbook page or pixilate on a computer screen. They are not the ones inside my body.
The day after I return home from my four-day hospital stay, hung over from all the medication, I tell my sister, Whitney, on the phone that I haven’t left a mark on the world, and who knows, I could be gone soon, what with this pulmonary illness that has infiltrated my lungs, leaving lacy patterns in the upper lobes like doilies floating among debris.
But I haven’t done anything, I say to Whitney, I haven’t made a difference at all. I can’t even leave any kids behind. No husband. Nothing! I moan, out of breath. Neither of us likes moaners or whiners or complainers, and even as I hear myself saying the words, I hate myself for doing so. I don’t want to be this person. It wasn’t supposed to turn out like this.
My cat, Webster, whirls like dust around my ankles. I barely see him but know he’s there. He needs a new home. Soon. Due to this lung stuff and the fibrosis. Now, there’s another word to Google. Fibrosis. And interstitial lung disease. Two things to Google.
Whitney asks me if I read the obituaries. No, I say, do you?
Yes, she reads them every day in an actual newspaper that arrives on her concrete driveway in a cul-de-sac in a family-filled Mississippi neighborhood, many miles away from my North Carolina townhouse.
Most people live average lives, she informs me. Most people don’t leave a big splash on the world but just live quiet, normal lives. Who’s to say what a great life is?
The next day she texts me: In today’s obits we have a retired seamstress and a retired homemaker who enjoyed gardening, painting, and crafts. See what I’m saying?
No one wants my cat despite his glossy black coat, clear green eyes, and flawless health record. At age ten, he is too much of a risk. What should I tell him? Age discrimination is a bitch.
When I’m in a quiet room or lying in my bathtub after the water has stopped running, I hear a subtle flutter in my lungs. A hummingbird’s whir. It’s not alarming on its own, but it’s scary in my life’s context: two bone marrow transplants to fight leukemia in my mid-twenties, including full body radiation, loads of chemo, and harsh drugs. It’s twenty years later; I don’t think I was supposed to make it this long. Survival has its consequences.
Text from Whitney: Obit for the day: 64-year-old retired intensive care nurse…enjoyed reading, traveling, and caring for her pets.
I must undergo an echocardiogram at Duke Medical Center because my new pulmonary specialist is concerned that in addition to my lungs, my heart, too, may be compromised from the treatments that kept me alive so many years ago. The bright-eyed female technician decides to use me as an example to illustrate specifics about the echo machine to another young woman, a resident doctor. You don’t mind, do you? the resident asks. I don’t; I am a great specimen. It’s a skill you acquire over time.
The technician pushes the device (a transducer) around my chest, which is spread with slick gel. She and the resident study the screen along with me, although I have no idea what I’m looking at. It’s an amorphous blob with an area that looks like a small mouth opening and closing. So, you have pulmonary disease as a result of the bone marrow transplants? the technician asks, making small talk as she tries to nudge the device under my ribs. You never smoked or anything? I stare at her bouncy chestnut hair and shiny barrettes. Right, I say. All that chemo and radiation.
It’s like what we always say. The resident pipes in, confident in her seniority despite her youth. You just trade one disease for another.
A couple years ago, I learned on Facebook that a childhood friend, a veterinarian, had committed suicide. I knew her in elementary school, before my family moved away to a different town. She remains permanently young to me, a sliver of life in a faded snapshot, standing beside me, elbows touching mine as I blew out the candles on my birthday cake. She had traveled to Africa to save goats and pigs and horses; Rwanda to work on AIDS prevention; Pakistan, to field-research diseased donkeys. There are photos and articles published in journals about her lust for life and goodness of heart. A very long obituary.
She ended it at age forty-four with medication she gave the animals to put them to sleep, the ones beyond repair. She will never grow old, corrode, slump over with brittle bones. She will never wheeze on a lung machine or need an oxygen tank to breathe. After they cremated her, a friend posted an image online of the clear plastic bag containing her ashes, alongside photos from her life and an invitation to the Nevada desert location where the ceremony would take place. There was her existence, leaping from my computer screen: a youthful woman with vibrant colors juxtaposed with a dull bag of ashes to be scattered.
The pulmonary doctor at Duke e-mails the results of my echocardiogram: The heart seems to pump well and there is not any scarring of the heart sack (which can occur sometimes after radiation or chemotherapy) …good news. Ha! What does he know about my heart’s scars, which I can assure you are too numerous to count?
I recall my early twenties—prior to the leukemia—when I pursued an acting career. I posed for several photographers for headshots and publicity-type photos. One of the photographers I worked with had been in a fire as a child. His face was patched with varying shades of skin, like a quilt—skin lifted from different parts of his body and grafted onto his face. Some of it looked hardened and callused, and the overall effect was distorted. I tried not to stare as I thought about how difficult it must be for him to live with all those scars on the outside.
My sister comes to the rescue. She will take Webster. We will fly him to Mississippi where he will join her robust family: four cats, two dogs and two kids, in addition to Whitney and her husband. They will protect him and his clawless front paws, which make him slightly vulnerable. It will be a big adjustment for him, as he is a bit of a loner. But we creatures adapt to survive, do we not?
This is not the first time my sister has saved me. Her bone marrow was a perfect match for me when I was diagnosed with chronic myelogenous leukemia (CML) and needed a transplant. When I had a recurrence two years later and needed a second transplant, she saved me again. Her marrow kept me from dying years ago, and even now, a mutated version of it courses through my body, through my bones, keeping me alive.
I find myself reading online obits lately, and this one jumps out at me: Age eleven, an avid rock collector, also enjoyed building with Legos… An amazing big brother to his little sister… I hear my sister’s voice: Who is to say what a great life is?
There are times when I feel that I cannot take another blood test, ER visit, needle under my skin. Cannot swallow another purple, pink, yellow, white pill. I study the side effects printed on the info sheets enclosed with one of my most recent drugs (yet another drug to combat this lung issue), and I examine the long-term consequences of taking it. I search online for more information. WebMD and other medical sites paint a dismal picture: Potential for tumors after taking drug over an extended period of time. Potential for other types of cancers.
But I’m banking on the present, not necessarily the future. In a way, the resident doctor at Duke was right about trading one thing for another. If I have to choose, I’ll take the present.
Whitney texts me photos of Webster gazing up at the camera phone, his green eyes sparkling from the flash. He can’t play outside with the other cats but he has found a private spot inside a large closet with a window in the master bathroom. He perches on the wide window sill and watches kids cavorting in the cul-de-sac, birds perching on tree limbs. Perhaps he sees a cat scoot by from time to time. My sister has informed me that despite their attempts to coax him out into the rest of the house, Webster seems happiest in his little space. He tiptoes out of the closet to be pet and held by the family when they are nearby, and he sometimes ventures into the adjacent master bedroom at night, stalking around the room in the dark and returning to the closet before dawn. I wonder what the shock of the sudden change in his life has done to him. Adjustments can take a long time.
I lounge on a sofa in a friend’s living room, watching Game of Thrones. It’s season four, episode eight: Robin, a sickly boy who has been sheltered and overprotected in a castle his whole life has recently been given the powerful position of “Lord” after his mother’s death.
Robin is terrified of going out into the world, where so many dangerous things lurk, where he could die. Baelish, his stepdad, tries to calm him down, telling him that people often die from everyday causes (“People die at their dinner tables. They die in their beds… Everybody dies sooner or later…”) and that instead of fearing his inevitable death, he should spend time focusing on his life, which lies before him. “Take charge of your life for as long as it lasts,” Baelish tells the boy.
I get a chill as I watch; Baelish is speaking directly to me. It’s a shift in mindset: don’t focus on dying, focus on living.
The more damaged your lungs are, the prettier they look on the screen—at least that’s what I’ve concluded so far, based on my observations of X-rays and CT scans. Like butterfly wings filled with flecks and intensity. A doctor once informed me that she knew of a case in which a person had one lung removed, and years later, the remaining lung began regenerating a new one in the vacant space, much to everyone’s surprise. I’ve thought about that a lot lately, and instead of an ugly spongy lung, I find myself envisioning a bright yellow sunflower growing slowly into the void. Brightening the darkness.
Back home, I jot a note on a scrap of paper and place it on my nightstand: Focus on how you will live.
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