A Daughter of ALS

Something I wrote many years ago.

I was seven. The blue patchwork quilt covered my dad as he lay in bed in our suburban San Francisco home. Dad pushed his pillow under his head. His blue eyes looked into mine. “I’m sick,” he said. “Really sick.”

“Like the Hong Kong Flu?” I asked. It was 1971 and in my seven-year-old mind, the Hong Kong flu was the worst imaginable type of sickness. I assumed Dad would stay in bed a few days then return to normal. No one told me he was going to die.

We visited our grandparents later that week.  While the grown-ups talked in the living room, my sister and I were told to play in my mom’s old bedroom. We played with Mom’s old dolls and pulled my grandma’s coats and sweaters out of the closet to try on.

An hour later, Mom told us to clean up. It was time to leave. When we reached the front door, my grandparents were waiting for us. My grandpa hugged me, held my face, kissed both of my cheeks and for the first time I remember, he told me he loved me.

Bridget and I walked to the Pontiac parked in the driveway. Mom ran ahead of us, opened the front door and told us to get in. I looked behind me to find Dad lying across the back seat.

Grandma rushed out the front door with a pillow and placed it under Dad’s head.

“I’ll get this back to you soon, Mildred,” he said.

“You don’t worry about that, Bill. You just take care of yourself.”

Dad lay motionless. Normally my sister and I fought over who was hogging more space in the backseat. That day we squished together in the front seat of the Pontiac and said nothing.

As we pulled out of the driveway, a deep frown crossed Grandma’s forehead. I watched her wave like a robot while we drove away. At seven years old, I knew something was wrong.

We drove home in silence. This was the day my grandparents were told their son-in-law had a fatal disease, ALS, Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease.

Over the next few years, I watched my dad get weaker. His fingers quivered; his arms shook unless they hung limply at his sides.  I had assumed he was tired, but people behaved differently. Neighbors dropped by bringing food. Adults spoke in whispers. Suspense filled the air and I held my muscles taut, waiting for whatever bad thing was out there to happen.

My parents started to disappear for days at a time when I was nine. Mom dropped us off at my aunt and uncle’s house, saying she and Dad were going on vacation. In reality, they visited the Mayo Clinic, Good Samaritan Hospital, clinics in southern California and Mexico, in search of a cure for the always-terminal ALS.

Before getting sick, Dad would carry my sister and me to bed each night. “Fireman’s carry, Daddy!” we’d shout. My six-foot four-inch father would throw us over each shoulder, carry us down the hallway and plop us both into bed. He’d tuck us in, tell us a story, usually about two little girls who were sisters, and kiss us goodnight.

After my father’s diagnosis, my parents decided it was best to give their daughters as normal a life as possible. Bridget and I knew Dad was sick, but we didn’t know he was going to die. No one told us what ALS was. All we knew was that Dad was getting weaker, thinner, and couldn’t do things anymore on his own. No one talked to us about death or the dying process.

I remember an evening in 1973. I was nine years old and playing softball with the neighborhood kids and their dads on our street in Los Altos. The mailbox, fire hydrant, and chalk-filled squares were the bases. My friend’s dad picked up the bat, swung hard and sent the ball flying down the street. Kids cheered and jumped trying to get the ball to the catcher and force an out. From left field, I stood with my mitt in hand and saw my dad awkwardly shuffle out our front door toward our makeshift softball field.  Since he now spent most of his time on the sofa or in bed, I hadn’t expected him to play.

He stood at home plate, the bat hanging in front of him and with both hands, tried to swing, but the bat only rose two feet off the ground. The ball flew above the bat.  I watched my dad, barely able to lift the bat, try again.  Not understanding my father was terminally ill; I was embarrassed, thinking he was just bad at sports. I couldn’t understand why the other fathers let him walk to first base and spoke encouraging words to him.

For a long time, I looked back at those instances, ashamed for thinking only of myself. It took many years to understand that I was a kid, a kid who didn’t know her father was dying and what that meant. I had spent the previous two years watching adults speak in whispers around me. It wasn’t the kind of environment where I felt secure enough to ask questions and at nine, I still didn’t understand that death was coming. I wouldn’t have known what questions to ask anyway.

From ages nine to eleven, I learned to keep quiet.  When I finally asked, “What’s wrong with Dad?” the only answer I received was, “He’s sick.”

One night when I asked Mom why she was fixing Dad a special dinner, she turned from the stove to face my eight-year-old sister, who was sitting at the kitchen table. Mom grabbed pennies from Bridget’s hand. Bridget had once choked on a penny as a toddler. Mom angrily said, “Give those to me” as she unfolded Bridget’s fingers and released the coins.  I watched my sister squeeze her fingers to her palm and yell, “Why? I’m not doing anything.” Somehow, I knew Mom was upset with my questions about Dad and why he needed a special dinner. All I knew was that I had made my parents upset. I didn’t know fear had gripped our household.

I learned to pretend that everything was normal, even though it wasn’t. I accepted their lack of explanations and moved on with my childhood.

My mother now says that hiding the fact our father was going to die and pretending we could have a normal childhood seemed like the right thing at the time.

As the disease progressed in his body, my father’s muscles weakened and, due to atrophy, started to die. He already couldn’t use much of his hands or arms. As the muscles in his tongue grew weaker, his speech suffered. He lost weight, especially in his legs. My father, a former high school football player and Army Sergeant, was emaciated. At 6’4”, he weighed 120 pounds.

Because he was no longer able to button buttons, buckle belts, or tie shoes, I helped my dad get dressed in the mornings.  One morning when I was eleven, I was buttoning my father’s shirt. He watched me dress him as his arms hung limply at his sides.  He looked down at me and said, “You have to take care of your mom and sister now. I can’t do it anymore.”

I stepped back from my father, stared into the carpet and knew right then that my childhood was over. I nodded and obediently walked to his closet, bent down to pick up a pair of shoes, and when I stood up I felt not only the weight of the shoes, but also the huge responsibility I now had of taking care of my mom and sister.

My father watched the disease ravage his body. I watched the disease ravage his mind. His frustrations of not being able to do what other thirty-eight year old men did made him angry. He kicked the dog when she was in his path. I watched as he slapped my nine-year-old sister from across the kitchen table for saying she thought peas were gross and wouldn’t eat them. In response, I gathered the dishes and left the uncertainty of the dinner table for the relative safety of the sink on the other side of the kitchen.  I figured he wouldn’t get mad at me if I were doing something a good daughter would do, like cleaning dishes. While standing at the sink, I’d stare out the window and watch the kids ride their bikes on the street. I wished I could get on my bike and ride away.

Mom had no idea about my promise to Dad. She had spent all her time focused on taking care of Dad and finding him the right medical professionals.

I overheard Mom talking to her mother one day. “The doctor says not to leave any washcloths near Bill, because ALS patients often try to suffocate themselves by stuffing washcloths in their mouths.” I tried to imagine wanting to die by putting a cloth in my mouth and stopping my breath. It seemed impossible. It was the first time I figured my father was so sick that he could choose to end his life via washcloth suffocation. What kind of illness was this?

Over the next two years, Dad’s anger consumed him. When anger gave way to depression, Dad spent all his time in bed or on the sofa and not a part of our lives. My mom took over. She became both mom and dad for her daughters.

Previously, Dad had been the one to play with us, but now mom, still making sure we did our homework and ate balanced meals, took over that role. She was our Girl Scout Troop leader. She took us to Hawaiian Hula lessons, football games in Berkeley, and origami class. She made sure we spent time with neighbors, friends and their families. My friend’s dad and brothers would take our Girl Scout troop camping. They taught me how to pitch a tent, build a campfire and cook over it, where to find water, and how to plan for inclement weather. I loved spending time at my friends’ houses. When their parents fussed over my well-being, I felt safe and loved.

My father’s parents had died when I was very young, but he had a brother and sister who lived nearby. During the years Dad was still at home, but sick, I had waited for his siblings to arrive at the house with food and books and offers to take us away for the weekend, but they never did.

They spoke to my dad, but never to Bridget and me. They helped him, but not us. Somehow, I took that to mean I must have done something really awful. Why hadn’t they ever come to check on me? Mom and Dad spent time away from home, visiting doctors and clinics, while I cooked for my sister and helped her with her homework.

As his illness took more and more of his body, but left his mind intact, Dad’s anger from dying of ALS destroyed his family. He blamed his wife and his daughters for not being there enough for him. Bridget and I, still being children, didn’t know how to help and no matter what Mom did, it wasn’t enough. Dad wanted to stop dying, but no one had a cure.

After years of being mother and father to two daughters and wife to a depressed, angry, terminally ill husband, my mother filed for divorce.  She realized she could give her daughters at least one parent who could be present for them, rather than subjecting us to a father who blamed us for everything and a mother who couldn’t humanly do enough for her dying husband.

Dad moved to a nearby condo, working with doctors, nurses and physical therapists. Left with only one parent, Bridget and I developed a relationship where, even though we fought constantly, we knew we only had each other to count on. No one else knew what it was like to have a father dying of a wasting-away disease. I didn’t mind taking care of my sister. It was a promise I intended to keep.

For my own protection, I chose to stop speaking to my father when I was 15. He had threatened to kidnap me. He had told me if I didn’t do what he wanted, that I wasn’t his daughter anymore. Eight years of dying and wasting away had turned my father’s mind to a place where he couldn’t leave his rage behind. He wasn’t my Dad anymore.

I realize now that being trapped in a body that wastes away, leaving your mind intact is a cruelty no human should endure. My father lived twelve years watching his body disappear, leaving his mind in a shell. I did see photos and finally had a few phone conversations with him. (He heard my voice, I heard him make grunting sounds.)

I had updates through those last years.

“Your dad can’t swallow.”

“He can’t blink.”

“He’s down to 98 pounds.”

“This is it, his lungs are giving out.”

The lungs were it. Dad died of suffocation in December 1983, a case history at the time, living longer than anyone else with ALS. The norm is 2-5 years. He endured 12.

I grew up believing I was on my own, that there was no help, that I was responsible for others, and that people always left. I lived each day in a state of panic, waiting for the next horrible thing to happen.

When I meet someone now who is losing her father to ALS, I wish her many things. As awful as it sounds, I wish her enough time to say goodbye and feel the love between father and daughter, but not so long as for ALS to dump its ugly anger upon her.

I want her to know it’s is not her fault her dad is leaving. I want her father’s family to show up and pay attention to her; ask her questions. I didn’t know about dying as a kid. I knew something horribly wrong was happening and I came to my own erroneous conclusions.  I wish those same aunts, uncles and grandparents will continue to be a part of the daughter’s life, letting her know she is loved and that sometimes, bad things happen but she doesn’t have to be alone.