April 10, 1979:
Caucasian woman, age 43, in a coma for the past 6 days.
Diagnosis: meningo-encephalo-myelitis.
Cause: unknown virus.
Prognosis: possible death, possible permanent brain damage,
possible total paralysis — perhaps something better.

A muffled noise — a male voice. I can’t make out the words. Who’s talking? Like straining to see in a snowstorm, I detect only the blurred outline of a person. Now it’s clearing a bit. Three figures hover over me — clad in white. Surgical masks cover the lower half of their faces. The three pairs of eyes, peering from above the masks, focus on my throat. I catch a glint of steel in a hand — it’s a scalpel!

What are they doing? My God, are they cutting my throat? They must be surgeons. Is that you, Daddy? Taking care of me? No. We had your memorial service several years ago. Your surgical residents felt you were like a father for them. And of course, there was lots of praise for your apparatus that enables heart bypass surgery. You will ever be known as “Dr. John H. Gibbon, Jr., inventor of the heart-lung machine.” You performed the first successful heart bypass operation ever performed on a human when I was a senior in high school in 1953.

But why am I the one beneath the surgeons’ intense gaze. Why are they cutting my throat?

Their task took but a moment, for they have already disappeared.

A nurse’s face became visible, framed like a portrait by white mist.

“The doctors explained very clearly to you what they were going to do before they began,” she said.

I must have looked puzzled, for she added, “They made a quick incision in your throat and inserted a tracheotomy tube. A machine will now breathe for you.”

I know what machine it is! It’s an artificial respirator! That’s the machine the residents were developing in Dad’s surgical lab when I worked there for my college job. The apparatus was designed to push air into the patient’s lungs during open chest operations.

But why am I connected to this machine now? My chest is not surgically open. It must not be expanding and contracting adequately. How prophetic! The machine we were developing over twenty years ago is now keeping me alive!

I became closer to Daddy, while working in his lab. I remember as though it was yesterday that very sad day we shared. It was two years after Dad’s first open-heart surgery and I was thrilled to have a chance, for the first time, to see him perform open-heart surgery.

The surgical lab buzzed with preparations during the days preceding the operation. Everyone in the lab had a role in the operation. My job was to deliver blood samples to the laboratory for analysis.

Dressed in a surgical gown, I stood proudly beside Dad’s machine as the operation began. Bright lights glared down on the doctors clustered around the operating table. It was difficult to recognize these masked strangers as the men and women I worked with every day in the lab. But I knew which eyes were Dad’s. His calm, firm commands let me know how the surgery was progressing.

“Scalpel.”

“Forceps.”

“Suction.”

I knew the chest cavity was being opened, for I had watched similar operations on animals.

“Tubing.”

“Clamp. There, that one is in place.”

Dad must have inserted the tubing into one of the large vessels bringing venous blood to the heart.

“Now screw down the clamp, slowly at first, to get the blood flowing into the machine. Good. What’s the blood pressure?”

The technician responded.

“Fine. Now restrict it all the way. Blood pressure still OK?”

“Fine,” was the report.

Dark maroon blood began to slide down the screens in the oxygen-filled chamber. Bright red blood collected at the bottom of the screen, for it had absorbed oxygen and released carbon dioxide much as it does in our lungs. The blood was then pumped back into an artery on the other side of the heart, and from there to all parts of the body. The machine was doing the work of both the heart and lungs, so the surgeons could operate on a relatively dry, bloodless heart.

“Let’s get a check on the oxygen and carbon dioxide,” Dad said to the doctor managing the machine. He handed me two samples — one dark venous blood, the other bright red arterial blood. I took the precious containers, and sped through the hospital corridors. I took long rapid strides.

Shiny waxed linoleum. Don’t run in school halls or hospital corridors. Must not slip and brake the vials. They’re depending on me.

I reached the lab and handed the blood to Joyce. Fifteen minutes seemed like an hour as I waited impatiently for her to determine the level of oxygen and carbon dioxide in the blood. Finally, Joyce put the results in my hand, and I quickly retraced my steps to the operating room.

The results were satisfactory. Soon I was sent again to the lab with two more vials of blood.

But this time, when I returned with the results to the operating room, I could tell something was wrong. All eyes were riveted on the operating table. There was not a sound. The patient had been disconnected from the machine, but the heart had not resumed beating. I cowered just inside the door watching the drama that wasn’t supposed to be happening.

“Stand by,” Dad said. “We’re going to give it another shock. Ready?”

“Go!”

The body arched with the jolt of electricity, and then sank back onto the table. Another tense silence.

Then came the dreaded report from the doctor monitoring the blood pressure.

“I still can’t get a reading.”

The process was tried several more times, but it was no use. All I could see of the patient was her feet. Slowly, before my eyes, they turned a light blue-gray color. I had never seen a dead person before.

Without speaking, the team mechanically went about the job of putting away the machine and cleaning up the room.

I carried my own despair home. Daddy arrived several hours later, looking grim. Silently he put his arm around my shoulders. We didn’t discuss what had happened. Dad seldom verbalized his emotions to us kids. I think he didn’t know how.

“She was a young woman your age,” was all he said.

That was the last operation he performed with his machine. “The younger surgeons can do it,” was the only explanation. But he was only fifty-three years old.

Dear Daddy. Did you stop operating with your machine because you associated that woman with me? I miss you, Daddy. You made me feel safe in the world. I wish you were with me now.

Exhausted, I closed my eyes and slipped back into my still, blank space, glad someone else was in charge.

Through the haze I see Arthur’s face. His brow is furrowed, eyebrows close together, with two little vertical creases between them. Poor Arthur. He’s worried. I wish I could speak. I would tell him how peaceful I feel.

Don’t be sad, Arthur. Remember our happy times together. Those early years were filled with folk dancing and trips in your van. You must have known that the way to a woman’s heart was through her children, for you included Mike and Jenny, then only eight and six, in everything we did. They even came on our honeymoon with us. Remember? You painted “Just Married” on the side of the van before we set out for Montreal to explore Expo. When we came to a toll station, the kids hid in the back under the blankets until the men at the toll station had read the “Just Married” sign. Then they would pop up and wave as we drove off, delighted at the astonishment on the faces of the toll keepers.

You are fading, Arthur dear. I can’t see you clearly. Don’t worry. I am serene here with my memories. A neutral fog envelops me. It’s not the ominous fog one experiences in a boat out on the open ocean when the shoreline disappears — not a wet exciting early morning fog before the noonday sun burns through to reveal a crystal clear day. Just a neutral, rather peaceful fog, muffling all sound, softening all lines — stillness.

The mist is parting.

I see my brother, Johnny, standing outside the window. He smiles and gives a little wave. Tears glisten on his cheeks.

Johnny is crying because I am ill. How sweet of him.

Do you remember, Johnny, teaching me to throw a football — to put a spin on it and catch it by bringing it in to my body, kind of hugging it? And climbing the big tree in the back yard? My favorite spot was a Y where three branches made a comfortable seat. I was good at tree tag, swinging from one branch to another, or carefully balancing while scooting along a branch with a leg dangling on each side. But you were better, and always won. Big brothers are supposed to win.

And there were games of Kick-the-Can, Hill-Billy, and Rover-Red-Rover with the boys from across the alley. I used to play baseball and football with you guys, too. But when I got to be 11, my femininity got the better of me, and I preferred to sit on the steps and watch Billy, Joey, you, and the others.

Remember the night I came floating up the stairs, all starry-eyed, to your room on the third floor. I told you my secret: Billy and I had been talking in the makeshift clubhouse in the far corner of the back yard. When we parted, he kissed me good night. It was my first kiss and Billy was my first love. I was twelve.

It was an asset to have a brother two years older. I could ask you the meaning of any dirty word I heard. Then I’d pass the information along to my girlfriends. And dancing. At Mum and Dad’s New Year’s Eve parties, with the women wearing fancy long dresses, you would twirl and dip me as if we were in a Broadway musical. After the New Year was ushered in with Auld Lang Syne, we would gather around Mum at the piano and sing Christmas carols in harmony. We sang harmony while washing dishes in the summer, too. I didn’t want to miss out on washing dishes, because there was always a gang of us singing spirituals, intricate rounds, and some popular songs like “Good Night Irene” and “Don’t Fence Me In.”

It was the early 1950s, and I thought you sang and played guitar better than Elvis Presley. You even looked like him. My high school boyfriends never managed to measure up to that standard.

You and I drifted apart in our twenties and thirties except when family crisis — divorce, serious illness, and Dad’s death — periodically brought us close again.

Now you are outside the window of my hospital room with tears in your eyes because of me. I feel proud to have such a brother — a competent male who permits himself to cry.

I love you.

You are fading now, Johnny. I am tired. I let the fog close in again.

Two weeks later, I received a love note from Johnny in an enormous scrawl on legal size paper. He calls me by my nickname, Palsie, or Pal for short.

My Dear Dear Pal,

I’m writing just to tell you how much I love you and how much you’re being alive means to me. When you were in a deep coma we all — and the doctors too — thought you would die.

You know, one of the memories that came to me then was of us practicing kissing so the noses wouldn’t get in the way — do you remember?

My memories about you are all full of a bouncy quality — even from Antioch. (I don’t mean like Tigger.) Then when you smiled when I visited you in the hospital, tubes and all, it was that same vibrant life of you, shining. And of course we cried, partly even in relief that the core of you was safe. Forgive my relief, for I know you face terrible fears, but the center of the person you are is there.

Well dear, that is all I wanted to say now — just a love note from your brother who feels he is with you whenever you need him.

Johnny

The bouncy Tigger reference is to the Winnie the Pooh character.

Often I would have a glimpse of “my nurse.” I never knew her name. She was young and pretty. When she cared for me I felt her gentleness envelop me like a warm bath. I couldn’t talk because of the tracheotomy tube in my throat, but she seemed to understand what I needed. She told me to breathe out (or was it in?) to ease the gagging sensation as she sucked out the gunk in the trach tube in my throat, making a noise like a straw getting at the bottom of a milkshake.

But then a fateful day came.

“I’ll be off duty for a few days,” she told me. “Another nurse will be taking care of you.”

“Oh, no. Don’t leave me,” I pleaded silently through tear-filled eyes, since the tracheotomy made me mute. “You’re my mother, my lifeline. I can’t live without you.”

She left me anyway. And I did survive.

When my nurse returned she explained to me that nurses in intensive care are intentionally rotated every five days or so to keep them from becoming too attached to a patient who may be dying. A good compromise, I suppose, between the nurses’ well being and the patients’ need to bond with their primary caretaker.

Soon my vignettes began to follow one another with a vague sense of sequential time. Gradually, I became aware of my present surroundings.

One day as the mist cleared I saw my nurse preparing to brush my teeth. “Would you like to brush them today?” she asked. I nodded.

The nurse put toothpaste on the brush and handed it to me. I dropped it.

My hands don’t work! I can’t even hold a toothbrush!

“Don’t worry,” she said, sensing my dismay. “I’ll brush them tonight. You can try again tomorrow.”

But my hands didn’t work the next day either.

Indeed, during the whole six weeks in intensive care my hands hardly functioned at all. Arthur got me a color TV, but I was too weak to push the remote control button. More important I couldn’t push the button to summon my nurse. The staff solved this problem by moving my bed close to the nurses’ station. I learned to summon the nurse by making a clucking sound with my tongue against the roof of my mouth. The sound resembled my great Aunt Hat’s “Tch-tch-tch” when she disapproved of me.

Soon I began to use this clucking sound to my benefit. In my six weeks in intensive care, one of the primary duties of the nurse assigned to me was to suck the phlegm out of my throat so the trach functioned properly. None was as gentle as my first nurse was. One nurse was really rough; she always caused me to gag. So I’d look around to make sure she was not in sight before I made my “Tch-tch-tch” noise.

My older sister, Schatzie, visited me in the ICU. Her given name is Mary, but she was called Schatzie by a German nanny when she was very young, and most of us in the family have never called her anything else. It means something like “Sweetheart.” Her visit brought back memories from my childhood.

I remembered as an eight-year-old, my love for Schatzie was mixed with feelings of admiration and envy. The poem she wrote when Granny died was lovely and I wished I could write like that. She also organized a play group of nursery school children during the summer — their parents paid her. I couldn’t possibly do that either. Mother tactfully muted my feelings of inadequacy by pointing out that Schatzie was four years older than I. And besides, she reminded me, I had other talents, such as singing and dancing. I missed Schatzie when she went away to college, and loved her visits back home when we would talk and try on each other’s clothes.

Communicating with her was less frustrating than with others, for she seemed to read my lips easily — or was it my mind? We smiled and agreed it must be our forty-three years of close acquaintance.

Schatzie was with me on the thirty-sixth day of hospitalization, when they took the tracheotomy tube out of my throat and the feeding tube out of my nose. There had been times when the tube to the trach had been disconnected. Now I realize this was to wean me gradually from a respirator. During one of these self-breathing sessions, the doctor instructed me to put my finger over tube opening in my throat. The he told me to speak a couple of words. I did it. No problem. I don’t remember my first full sentence after the tube was removed. But I do remember the first food.

Schatzie propped up my head and shoulders slightly on a pillow. “I’ll feed you,” she said. “Try some of this.”

I took a little taste. Red Jello! Delicious!

I once heard about a small starving community that decided their little bit of food would go farther if they fed it to each other, for the love evoked by that act would enhance the nourishment of their meager rations. So it was that day. It wasn’t the gelatin that nourished me most. It was the love from Schatzie that came with it.

She once told me what pleasure she felt when she cared for her babies. Now I was the privileged recipient of her tender loving care.

My children came to visit me, also. The visits of eight-year-old Benjie were stepping stones toward the realization that my motor function was seriously impaired. Young children are usually not permitted in intensive care units, but Arthur managed to get special permission for Benjie to come and see me. In preparation for his visit I asked Arthur to bring something for us to play with, since I couldn’t communicate verbally. He brought a Simon toy.

“It works like this,” Benjie said. “I push the colored buttons and it makes a tune.”

He pushed five buttons and the toy made a five tone tune.

“Now it’s your turn. You try to push the same buttons to make the same tune, and if you’re correct it rewards you.”

I was dismayed to find that I was too weak to push the buttons.

So I tried communicating by writing. With thick magic markers a friend had brought me the day before, I tried to write. The letters were an inch tall.

“Hi Benjie. Bring cards next time. We will play Rummy 500.” Benjie replied by writing a note about his school: “We have a tooth chart.” And he drew 32 teeth on the next page. (The first page, reduced in size, is reproduced on page 16).

Benjie looked critically at my page.

“The first two words are almost as good as mine, Mom,” he said encouragingly.

I smiled. My writing was pathetic, ludicrous, humorously abominable. But it would get better. After all, I could now hold my toothbrush in a two-year-old type fist to clean my teeth. It was a challenge.

Benjie brought cards the next time he visited, but that also proved to be discouraging, for my hands were still too weak to hold them.

These early stages of my illness must have been very hard on those around me. Seeing Benjie was a great pleasure for me. It didn’t occur to me that it might be upsetting to him. I didn’t know how I looked. They don’t provide mirrors in intensive care. Years later, Ben told me I had tubes all over — meaning the trach tube going into my throat, the feeding tube in my nose, and an IV in my wrist. (He would have missed the catheter in my bladder.) A male cousin in his early thirties came to visit and felt so distressed to see me in that condition that he had to leave the room. How much more distressing it must have been for Benjie.

Alas, after six weeks of nurturing attention from the nurses in the Intensive Care Unit, I was to be moved to a regular hospital room. Before my departure the nurses decided they should do something about my hair. The return of sensation and movement to my head and arms had been ushered in with excruciating pain. Every nerve on my head screamed, “I’m hurt!”

I couldn’t stand to have my hair brushed. I had long hair and by this time it was a mass of tangles. It was an omission of compassion that the nurses ignored my hair for those many weeks. And it was an act of compassion that the day before I was to be moved they tackled the job, somehow washing and brushing my hair as I lay on my back in bed.

It was a touching closure to my experience in the intensive care ward, where TLC accompanied every administration. But, I was not fully aware of how special that care was until I was moved to the ward and felt utterly abandoned.