“Do you know what the secret to life is?” Mom said as she squeezed my hand.
A strange dog, twice my size, was charging toward us. I clung to Mom's leg and tried to bury my face in the fabric of her pants.
“Don’t ever let them know you’re afraid.”She yelled and lunged at the dog, who turned and ran away.
Don’t ever let them know you’re afraid.
This was the secret weapon she gave me. I used this weapon, whenever I needed to be brave, through loose teeth, skinned knees, homesickness, and heartbreak.
Even after I grew up and left home, she was my constant. My secret weapon. A pillar amidst the chaos. This I understood before anything else. Before I understood mortality, or that mortality even applied to her.
It was about 9 p.m. when the phone rang one evening. She fell down again, can you come over, Dad asked.
Although it had been many years since she chased that dog away, she was still as brave and vibrant as ever. Until two weeks earlier, when she fell on the stairs and broke her foot. She forced herself to go to work as usual, but collapsed on the couch at night, complaining of pain and swelling in her leg.
When we arrived, she was hunched over and lopsided in a chair at the kitchen table, as if an invisible weight was tugging at her left arm.
“I’m fine,” Mom insisted, her body tipping and angling from the dead weight of her left arm.
Only the right side of her mouth moved, while saliva dribbled from the left. Her voice was raspy and muffled, as if lodged in her throat. Her eyes were only slightly open.
“I think she’s had a stroke,” Dad said. He held out her crutches, but she didn’t reach for them. He started pacing, picking up the phone and then putting it back on the receiver.
She leaned over and vomited on the floor. Twenty miles of country roads to the nearest hospital, an ambulance would take too long. I leaned over and hugged her tight. She wasn’t solid or steady. She was like an air-tight package that had just been punctured, the feel of something brick-hard becoming pliable in my hands.
We eased her toward the back door, her left leg dragging in its black orthopedic boot.
“It appears your wife has had a massive infarction,” the neurologist said to Dad.
We were in a small waiting room adjacent to the Emergency Room, just beyond glass front doors that read “There is Hope Here.”
The stroke was caused by a blood clot depriving her brain of oxygen, the neurologist explained. There was nothing he could do, he said, except admit her to the Intensive Care Unit. Strokes are only treatable within a narrow window of time. After the damage is too extensive, the risk of treatment outweighs the benefit.
I kept hearing words I didn't understand. Infarction. Contraindicated. Cerebral edema. Was he really talking about my mother, who just turned 60—a thin, non-smoking vegetarian who exercised every day? One moment, vibrant, the next, slumped over and drooling in a kitchen chair?
Don’t ever let them know you’re afraid.
The nurses in the Intensive Care Unit checked Mom’s neurological status every hour, shining a small flashlight in her pupils, pressing on her fingers and toes, and asking her to follow commands.
Her room was small, dark, and cold, with one wall of glass windows looking out at the nurse’s station.
At noon, the nurse shined the flashlight in Mom’s eyes and then left immediately.
“We’re losing her, aren’t we?” Dad questioned the nurse in the hallway.
“Her pupils are uneven. I’m calling the doctor.”
Within minutes, a neurologist arrived, accompanied by a neurosurgeon. The neurosurgeon was tall, with a boyish face—big brown eyes and dark hair. He wore a knee-length white coat with “Brain & Spine Institute” stitched on the left breast pocket.
“If we don’t operate immediately, she’s going to be brain dead in a few hours,” the neurosurgeon said.
He explained that cerebral edema, or swelling of the brain, was at a dangerous level. He wanted to remove part of her skull and remove the damaged brain tissue, to make room for swelling and to relieve pressure. Her skull would be stored in a sterile bone bank until it could be reattached.
I imagined the neurosurgeon drilling open her skull and cutting out the dead part of her brain. I wanted to scream. It seemed so hopeless, invasive, even primitive that this was the only option.
Dad signed the consent forms. They took her to surgery.
In the waiting room, someone handed me a small plastic container containing Mom’s diamond earrings. We panicked. We waited. Trying to make sense of things.
One neurologist suggested that the blood clot that caused the stroke originated from a larger clot in her leg, which likely formed when she fractured her foot. Another neurologist suggested that the clot formed in a hole in her heart known as a patent foramen ovale. A hole between the chambers of the heart that allows blood to travel through an unborn baby’s heart and body, while bypassing its developing lungs. A hole that is supposed to close at birth.
For the first time in my life, I had to face a difficult situation without my mother. I felt like I was going to stumble and fall. My eyelids were swollen and my vision was hazy. I couldn't keep track of things—time, people, my keys or jacket. Suddenly I understood that my mother would die—if not then, someday. And so would I. My entire life, I had somehow managed to keep the idea of mortality at bay. But suddenly mortality had slapped me in the face, showcasing our inevitable beginning and end, and this realization did not come gently. It came as I imagined them drilling open her skull and cutting out part of her brain.
After the surgery, Mom’s head was wrapped in a turban of gauze. Her right eyelid was bulging from the pressure of her swelling brain. Her tongue stuck out of her mouth beneath the endotracheal tube. Her chest heaved and a muffled, junky cough came out through the ventilator, triggering a shrill, screeching alarm.
We were hopeful. Mom had put her right hand up to her mouth and touched her breathing tube. Throughout the day, she wiggled her toes and fingers on her right side when asked: thumbs up, thumbs down, and a wiggle of her pinky. Purposeful movements.
But just before dawn her blood pressure was erratic. Alarms were sounding. She was terribly congested. Her temperature was almost 102. A nurse put ice bags and a cooling blanket on her.
“Let’s just see what the next hour brings and then go from there,” the nurse said. “This is the way it is with neuro patients. It’s like walking a fine wire fence. They could go either direction at any time. All we can do is read the symptoms and treat each one.”
We went through each night like this, walking the fine wire fence. Wiggle your toes. Squeeze my hand. We read to her, painted her toenails, and played music. I realized that we have the same ridges in our fingernails, and that our toes were exactly the same size and shape.
The noises haunted me. The whistling compression of air as the VenaFlow® sleeve contracted on her right leg, preventing the formation of blood clots. The beeps and clicks and alarms on the IVs and on the monitor that measured intercranial pressure. So many alarms.
I was haunted by a passage my sister read aloud from The Divine Secrets of the Ya-Ya Sisterhood, in which Sidda, the main character, contemplates the deep connection between mothers and daughters:
Sidda wondered about the subliminal knowledge that passes between a mother and a daughter. The preverbal knowledge, the stories told without words, flowing like blood, like rich oxygen, into the placenta of the baby girl as she grows in dark containment. Sidda wondered if, forty years later, she was not still receiving information from her mother through some psychic cord that linked them...
I was 29 years old. I was engaged. I owned a house. I had a career and a Master’s Degree almost completed. But I had never imagined life without my mother. The only thing as shocking and inconceivable was seeing her, my pillar, my secret weapon, crumble in an instant. One moment, bravely chasing away my demons, the next, a small, undefined mass beneath hospital bed sheets, ventilator tubing, and gauze. Would I, like Sidda, retain that deep psychic connection with my mother?
We had lost our center. On good days, we were giddy with hope. On other days, we cried and wandered and tried to prop each other up. We were in the embrace of friends, family, co-workers, and hospital staff who brought us meals, cards, flowers, and prayers. And life went on. There were bills to pay, plants to water, pets to feed. We had divided Mom’s life among us, and still we could not keep up.
One night, a family was standing around the bed of a new patient in the intensive care unit. All the lights were on in the room. Moments later, an alarm sounded.
“Code blue, CCU…Code blue, CCU…” a computerized female voice repeated. A woman screamed. Footsteps pounded down the hallway.
“NOOOOO!” the woman sobbed. More footsteps pounded down the hallway.
In the middle of the night, I lingered alone at Mom’s bedside, in this world of machines and monitors, where the sound of grief was profoundly louder than the combined chorus of many alarms. This world was foreign to me, and unsympathetic to those who don’t speak its language. I was terrified of the code blue. I was terrified that we would have to bury our mother.
At first Mom could not open her eyes or speak, so we held her eyes open while she used markers and a dry erase board to communicate. The move to the Rehabilitation Unit, including intensive physical, speech, and occupational therapy, brought a devastating awareness of her physical limitations. She would have to learn to swallow, walk, talk, and live with the use of one arm. After a month in a hospital bed, she could barely sit up in a high-backed wheelchair for five minutes before becoming dizzy and short of breath. The swelling in her brain had subsided, leaving a concave shape where her skull was missing.
She cried when she saw herself in a mirror. She laughed and then sobbed, sometimes so quickly in succession that you couldn’t distinguish one from the other. Some days she cried almost continuously—about Pearl Harbor Day, about never finishing her Master’s Degree, about things she never mentioned before. The doctors called it left neglect or emotional lability. Clinical explanations. “The shrink,” as she called him, told her to “control her emotions.” He persuaded her to take an anti-depressant. He visited a few times, and then disappeared. She searched for answers, questioning those she trusted.
“Why does God let bad things happen?” she asked the Chaplain and every Pastor who came to see her. But none of them had an answer.
Five weeks after the stroke, the neurosurgeon said it was time to put Mom’s head back together. He told us that he would re-attach her skull using four millimeter screws and some metal plates.
“Will you be using a power drill on my head?” Mom joked to the neurosurgeon, her voice soft and raspy. “I’m not entering any beauty pageants anytime soon so it should be fine.” On her good days, she had us all laughing.
In preparation for her second brain surgery, a radiologist placed a small umbrella-like device called an inferior vena cava filter in her abdomen to catch blood clots. Leaving only a minuscule incision, the radiologist positioned the filter via tiny cameras and small catheters, all so Mom wouldn’t pass another clot while they screwed her skull back on. Advancements like these have transformed major procedures like open heart surgery into minimally invasive procedures like angiograms, angioplasty, and stent placement, yet cerebral edema can only be treated by cracking open Mom’s skull and cutting out part of her brain. Modern medicine contains surprising juxtapositions of old and new, invasive and non-invasive.
After the brain surgery, she was awake, but groggy. Iodine was lightly smeared on her right cheek, mixed with blood. Her head was wrapped in white gauze. She said she couldn’t find her thinking brain.
“This brain says bad things,” she told us.
“Like what?” I asked.
“That maybe it should be like 'Million Dollar Baby.'”
I thought for a moment and then explained the allusion to Dad. “It’s a movie about a boxer who asks her coach to euthanize her after she becomes paralyzed.”
Despite her tremendous physical healing, from bedridden to walking with a hemi-cane, another type of healing—much more elusive, hard to treat, and slow to heal—had hardly begun. We were well trained in the use of wheelchairs, chair transfers, hemi-canes, and leg braces, but we were unable to deal with our own grief. I understood clinical terms like left neglect and emotional lability, but I couldn’t keep my family from coming unhinged. I feared random, unpredictable things, like the brain not having enough room to swell, or a clot smaller than the tip of a pencil causing a stroke. Most of the time I felt like I couldn’t breathe.
I was lying on a bed in a hospital gown, a Doppler ultrasound machine next to me, waiting to have a trans-thoracic echocardiogram that would reveal whether I had a patent foramen ovale like my mother.
“Have you had an IV before?” the nurse asked me.
“No, but I’ve given blood,” I replied.
“Oh, well this needle is about a third of the size. Don’t worry—I’ve done this a couple times before,” she joked, as she stuck me.
“At the end of the echo, we’ll be injecting agitated saline into your IV, and then we’ll watch it move through your heart,” she told me.
Jason, the echocardiographer, attached cords to my chest. “This is a Doppler ultrasound,” he said, applying a jelly-like substance to my chest and placing a flat, rectangular object there.
Suddenly my heart was on the monitor. It was stunning. A big oblong ball of pulsing light surrounded by darkness. It was heaving and thrusting and appeared to be divided in two.
“See this smaller side?” Jason asked. “This is your pulmonary side. It goes right to the lungs. All your veins feed back to this side. The other side is your systemic side.”
“My mom has a hole in her heart,” I told him.
“Ah, patent foramen ovale,” he said. “It means ‘the Window’ in Latin. It’s there so we can breathe without our lungs when we’re still inside our mothers.”
He started capturing pictures of my heart on the machine. He explained that if a patent foramen ovale is present, the bubbles can move from the pulmonary side to the systemic side, or from the right atria to the left atria, bypassing the normal route to the lungs and moving on to the brain and other parts of the body.
“Did you know the aortic valve is the point of highest blood pressure in the body? Look, the mitral valve looks like a fish mouth! Do you want to see your lung? Take a deep breath.”
I inhaled. My heart disappeared. I exhaled and my heart appeared again. I couldn’t help laughing.
“Our heart valves are actually like one-way doors,” Jason said. “Two of the valves contract at once and the other two relax. So it’s not really a pump. If your heart was really a pump, you’d only live five years and your heart would have to be three times as big.”
The nurse injected the agitated saline into my IV. Instantly I saw the right side of my heart fill with bubbles.
“See all the bubbles in the pulmonary side?” the nurse asked me.
Jason was suddenly quiet for the first time.
“Wait, let’s do it again,” he told the nurse.
“Why?” I asked, watching the bubbles move on the monitor.
“I don’t leave any room for doubt,” he said.
He took a series of digital pictures on the monitor. The muffled sound of my beating heart was audible through the machine as he captured the sound files for the cardiologist to listen to.
“So when do I find out?” I asked him.
“Next week,” he said.
But I didn’t have to wait. I saw the bubbles move to the other side. I knew I had my mother’s heart. The bad parts and the good parts. The hole that may allow a blood clot to travel to the brain, and her secret weapon—the kind of courage and strength she showed when learning to open her eyes, swallow, walk, talk, and adapt to the use of only one arm. Mortality may have slapped me in the face, but I could see now that I was capable of putting up quite a struggle.Don’t ever let them know you’re afraid.
Four months after the stroke Mom came home, walking with a hemi-cane and an ankle brace, her lifeless left arm in a sling.
Winter was on its way out, leaving an oozy, muddy, rutted-up earth. We sat at the kitchen table, watching the birds outside visit the feeder.
She started reading her daily devotions, using a pink index card to help her follow the line. Her hair had grown in around her incision.
I looked at the bird feeder to see my first robin of the season.
Her gratitude journal was lying open on the table.
“Our homes are our sanctuary from the world,” she had written. “Our lives are made up of all the little traditions and experiences we share with people. Cherish every moment.”
I knew there would still be difficult days ahead. Her physical wounds had healed but we had only just begun to redefine ourselves and our family.
“Did I sign up for this?” Dad joked, as he helped her walk to the bathroom. “I’m not sure this was in the contract. It must have been in the fine print.”
“You better make sure you have it in the fine print,” she laughed, turning to look at me.
The fine print. The unspoken part of “for better or for worse...in sickness and in health, to love and to cherish…until death do us part.” I looked at my parents, and thought to myself, this is what love is. This is the year I am getting married, and all around me, I see love in fine print.