Raising consciousness about issues connected to being handicapped, particularly using a wheelchair & problems with disabled parking.

Archive for the ‘terminal illness’ Category

Only the Good Die Young

Norma Pfaff Michel

Norma claimed to be five feet tall, but we always knew she was shorter.

My mother was a tiny woman, but her heart was huge.  Juvenile diabetics are often small in stature.

Her mother, Leona, had been a school teacher in Ashley, Ohio.  Her father, Fred, was a farmer who handcrafted furniture for extra money.  Norma Ann was their only child.

When she was seven, Norma contracted chicken pox.  It was a mild case, with only a few itchy spots.  Her return to school was days away when her illness took a tragic turn.

That morning, Fred and Leona woke to a silent house.  Anyone with a young child will understand the chilling fear experienced when waking up to a quiet pall, instead of an energetic grade school child exploding from her bed in search of breakfast.

Panicked, they raced to her room.

Norma was in a coma.

Her fever had spiked during the night.  At the hospital, she remained in a coma for two weeks.  The doctors didn’t expect her to survive.  When she finally regained consciousness, something was dreadfully wrong.

Norma was now a juvenile diabetic.

It appeared the high fever she suffered damaged her system.  She was very ‘brittle’, unable to engage in physical activity without upsetting her fragile blood sugar.  In one respect, she was lucky: insulin had come into use only the year before.  Otherwise, she would have died immediately.

As things stood in 1933, she wasn’t expected to live to adulthood.

The next few years were difficult.  Left with a enormous hospital bill but no insurance, Fred took a second job working for the Ohio Department of Transportation.  For three years, he worked a forty hour week for ODOT, coming home after to tend his farm.  He paid every penny of his daughter’s medical bills.

Leona dedicated herself to her daughter.  Norma fell sick easily, and spent a great deal of her time bedridden.  Leona saw to her education.  A kitten was brought from the barn to keep the sick little girl company.  She named him “Peter”, and remembered him fondly for the rest of her life.

Norma amazed the doctors by surviving into adolescence.  Fred’s furniture began selling for more money than he had ever imagined possible, enabling him to sell the farm.  They bought a home in town so Norma would be closer to school.

Though illness often kept her from class, Norma was popular with her fellow students.  She was a lovely girl, with bright blue eyes and a mischievous smile.  Her body wasn’t strong, but her bubbly personality charmed everyone she met.

One word described her perfectly: ‘vivacious’.  She was full of life, and always saw the best in everyone she met.

Because of her illness, she didn’t date in high school.  One boy had a big crush on her, but his parents wouldn’t allow him to court her.  In those days, teenagers from small communities usually married their sweethearts shortly after graduating from high school.  This boy’s parents wanted their son to find a healthy wife.

Norma believed she’d never find love.

Her best friend, Emma, was dating a nice fellow from the nearby town of Waldo.  Jim Coleman had a close friend who was in medical school.  When Jim introduced Emma to Don Michel, they both agreed he’d be perfect for Norma.

They arranged a blind date.

Later, both claimed they fell in love at first sight.

Jim was driving that night.  He’d picked up Emma and Norma before heading over to Don’s house.  When he climbed into the back seat, Don knew he’d met the woman he was going to marry.

Norma thought him the most handsome man she’d ever met.  Don was well over six feet tall, but the extreme difference in their height was meaningless.  Her sparkly personality was the perfect foil for his quieter, more serious demeanor.

They were married in 1950.

Mother was twenty-six when she married Dad.  Embarrassed by her more ‘advanced’ age—she was two years older—she was quick to shave a year from her official biography.  She piled her hair atop her head to appear taller, and wore high heels to minimize the height difference.

It wasn’t a perfect marriage, but I’ve never doubted their love for each other.   Mother wasn’t physically strong enough to be a true wife, in every sense of the word.  At the time of their marriage, the doctors believed she’d would die before age thirty.

Though Dad never admitted it, I believe he expected only a few years with his new wife.

He later told me that he knew Mother wouldn’t be able to meet his sexual needs, but he loved her so much, he married her anyway.  He wasn’t experienced in such matters, and thought he wouldn’t miss the sexual aspects of marriage.

To him, she was worth the pain her loss would eventually cause.

Dad fought a heroic battle to keep her alive.  She lived to be forty-nine, an astonishing age given her frailty and unstable condition.

When I was a small child, I didn’t understand how sick she was.  It wasn’t uncommon for her to simply not wake up in the morning.  The ambulance would take her to the hospital, and after a few days, Dad would bring her home.  To me, that was normal.

The first time I had to call the ambulance myself, I was about four.  Instead of being frightened, I was excited because I’d get to dial the telephone.  Dad kept the hospital’s number taped next to the phone, and made sure I could read it.

In those days, the heavy Bakelite phones had stiff rotary dials.  I tried to use one finger, like the grown-ups, but couldn’t turn the dial.  I resorted to using both forefingers.  The hospital number contained a nine, and I couldn’t turn the dial all the way.  It took several attempts to complete the call.

Dad arrived with the ambulance.  Nobody ever gave me a word of praise for what I’d accomplished.  It was just what I was expected to do.

Mother was terrified of snakes; even a toy snake was too scary.  When I was a toddler, a copperhead got into our cabin on Middle Bass Island.  Mother and Auntie Peg put the children on the table, and attacked the snake with brooms.   Screaming the entire time, they beat the snake to death, leaving the cottage filled with the stench of cabbage.

She was very sociable, and quite the ‘clothes horse’.  Dad joined every fraternal order available, so Mother could join the Ladies Auxiliaries.  She’d put on make-up,  suits with pillbox hats inspired by Jackie Kennedy, and get together with her friends for coffee.  Her mother was also a professional seamstress, so Grandma made her beautiful, original outfits of very fine material.

Mother had a fiery temper, but once she’d gotten the anger out of her system, all was forgiven.  Once, while we were downtown, she opened the door to exit her car.  An elderly man hit the door and knocked it off.

She marched out to confront the other driver.  With shaking hands, the old man struggled to remove his driver’s license from his wallet.  Mother stomped around him in tight circles, ranting that he’d nearly killed her and endangered her kids.

Without warning, the man collapsed at her feet, sobbing.

An instant later, Mother dropped to her knees and took the old man in her arms.   Rocking him back and forth, she crooned, “It’s alright, nobody was hurt.  Don’t cry.”

Once he started crying, all was forgiven.  She didn’t even care about the rough sidewalk ruining her expensive nylons.

Mother’s condition turned terminal when I was seven, but the adults didn’t tell my sister or me.  I remember coming inside for the evening to find Mother washing dishes in a dark kitchen.  She was going blind, and no longer needed to turn on the light.  I didn’t understand what was happening until two years later.

When I was in junior high, she started having strokes.  Her right arm was paralyzed, and she lost her ability to speak coherently.  “Go Disneyland, get giz-whiz” meant “Get me some ice cream.”

She was recovering from the first stroke when the second occurred.  Hearing a rhythmic bang from the bathroom, I found her having convulsions.  I had no idea what was wrong, but I knew it was bad.  She barely survived, and there was no further hope of rehabilitation.

One of the hardest things for me was that nobody believed me when I said she was terminal.  Everyone at school, even the teachers, seemed to think I was making up stories.  Perhaps they thought I was seeking attention, or making excuses for poor grades.  It was hard to care about classwork when I knew my mother could literally die at any moment.

Even my close friends, who knew Mother well, didn’t seem to understand how ill she was.  Occasionally, my friends came to visit her.  It amused me when Amy and Rita showed up and told me, “We didn’t come to see you; we came to visit Mom.”

I like the fact that my friends called her ‘Mom’.

Her bedroom became our living room.  The family would gather on her bed to watch television together.  I read magazines to her, and we laughed at Carol Burnett.  When the humans were absent, Mother had the family dogs and cats stretched out beside her on the mattress.

When I was twelve, she suffered a stroke so serious, she remained in a coma for four months.  The first month, Dad kept her at home, with an I.V. strung up from the light pole next to her bed.  He thought she was dying, and he’d promised her that he’d help her die at home.

That was the period when Dad went a little crazy.  He drowned his sorrow in booze.  After a month of this, my grandmothers went to court and had him committed.  They gained custody of my sister and me for the next year.

To everyone’s amazement, Mother survived again.  However, she’d aged so much during the crisis that I didn’t recognize her when they brought her home.  It took me nearly a year to accept the change.

Her circulation deteriorated, and her right leg was amputated below the knee.  She got a prosthesis, but before she really learned to walk again, a sore formed on her stump.  This time, her leg was amputated at the hip.

While she was recuperating, I came to visit her in the hospital.  She complained her left leg was cold.  The veins had collapsed.  Emergency surgery left her a double amputee, both legs taken off at the hips.

At this point, she became unwilling to eat.  When Dad realized she’d eat to keep from upsetting me, it became my job to feed her.  Our high school had three half hour lunch shifts; Dad arranged for me to have the entire ninety minutes off, and I went home—or to the hospital, if she was there—nearly every day to make certain she ate.  After school, I went home to feed her dinner, then was free to participate in after-school activities.

Once she was entirely bedridden, pressure sores became an issue.  In January of 1976, we could no longer care for her.  Dad was forced to place her in a nearby nursing home.  We brought her home each Sunday for a visit.

Mother was fascinated by the American Revolution, and thrilled by the American Bicentennial.  Once the celebration was over, however, she refused to come home for three weeks.

That last Sunday, she spent the day explaining to Dad what she wanted for her funeral.  Since I’d grown up with her garbed version of English, I’d become her translator.  As a result, I was the one interpreting for her that afternoon.  It’s a day I’ll never forget.

After hours of struggling to make her wishes known, she was finally satisfied that Dad understood everything she wanted.  She pointed at the phone with her left hand—virtually the only thing she had left that still worked.

“Now call,” she ordered.

Dad picked up the phone, and called Mr. Bennett, of the  Bennett-Brown Funeral Home.  Mother grew up next door to the Bennetts, so her dear childhood friend would be the man to bury her.

She returned to the nursing home, and refused her insulin.  A few years after her death, my grandmothers told me she didn’t want to ruin Christmas by dying during the holidays.

My father was stunned when she lingered for five days without insulin.  He didn’t want me to know what was happening, so I was forbidden to visit that week.  On Thursday morning, I woke to find Dad sitting on the edge of my bed.

He was crying, the only time I ever saw him actually weep.

“Mother’s gone,” he said.  “What do I do?”

We intended the funeral to be intimate.  Mother asked for donations to the Juvenile Diabetes Foundation in lieu of flowers.  When we arrived for the visitation, Mr. Bennett took us to the small room where she was laid out.  He showed us a display of the most beautiful flowers I’d ever seen.  Almost every one had a card inside, stating that a donation had also been made to her favorite charity.

“I want to show you something,” Mr. Bennet said.

He took us into the larger viewing room.  It was stuffed with bouquets.   They were stacked on every surface, and covered most of the floor.

“So many people ordered flowers, the shops here in town couldn’t fill the orders,” he told us.  “They had to send down to Columbus to find enough flowers.  I picked the best arrangements for her showing.”

Dad was never the same after Mother died.  He did remarry, but it wasn’t a happy union.  Although he’d been sober for years, he fell off the wagon when he lost Norma.  He died of a heart attack three years later, at the age of fifty-one.

There’s no doubt Dad’s alcoholism took its toll on his health.  He’d also suffered smoke inhalation a month before his death, re-entering our burning house repeatedly to save our pets.  He checked himself out of intensive care after three days, and no doubt that also contributed to his early death.

But I’ve always believed that my father actually died of a broken heart.  He just couldn’t bear to live without Mother.