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.

 

Friends, Food and Fireworks

July 5, 2001

Lake Tahoe

Tahoe City had the big fireworks show for the tourists on Independence Day. Those who lived deep on the West Shore cities of Lake Tahoe (Tahoma, Meeks Bay, Rubicon. Homewood) stayed on the West Shore as much as possible over the holiday. The traffic was too much for trying to get anywhere.

But on the 5th, a fireworks show happened off the Homewood marina, paid for by contributions of those who lived there.

Early afternoon, I had taken Petie, Louis’ beagle, for a walk while Louis was mixing Grateful Dead CD’s inside. When Petie and I returned, I said, “It’s such a beautiful day, we should get out.”

Louis stepped away from his music, “We should take the boat out to watch the fireworks.” We called a few friends who all said, “yes” to a cruise on the lake.

Later, while we were packing up towels and an ice chest, I thought about a guy Louis had recently met. “What about Lewis? I said.

“Last time I saw him he said, ‘See you soon,’ but I haven’t heard from him.”

“Maybe he’s waiting for you to call him.” Louis thought for a moment. “You’re absolutely right,” he said as he picked up the phone to call Lewis.

We all met at Obexer’s Marina at 5:00. Louis and another friend were untying the cruiser that comfortably held six from it’s buoy to pick us up on the dock. Lewis arrived with bags of food. We loaded onto the boat and took her out to the middle of the lake.

Lewis retrieved his food and placed it in the middle of the boat for all to share. Chips and a bean salsa. I dove right in. “This is really good.” I said with my mouth still full of the bean and tomato goodness. “Of course it is. I made it. “ Lewis laughed.

The sun started to set, creating an orange Alpenglow behind the mountains. As the sky changed to pink, all six of us on the boat ooohed and ahhhed at the same time. The calm lake water perfectly reflected the pink sky. Pink was everywhere; across the open sky, passing the granite mountainside, and over the immense lake.

We tied up to the buoy as the sky turned dark and waited for the fireworks.

The first one shot off right over us.  We gasped as we saw the colors of the fireworks in the sky reflected on the water around our boat.

The weather was perfect. The lake conditions were perfect. We couldn’t have planned it better, yet it had come together in a few hours. Friends, food, and fireworks in beautiful alpine scenery.

As Louis and I drove back to his house in Meeks Bay, I said, “I loved the salsa Lewis made. No wonder he’s a chef.”

Louis stared at the road, lost in thought, then said, “I wonder if he’d want to cater a video shoot?”

As far as I know, Magic Louis and Chef Lewis are still friends today.

An Audience of Grief and Love

At dinner the other night, the topic of 9/11 came up. Here’s my story:

I’d headed to San Francisco prior to the next L&L Publishing video shoot. Louis had paid Johnny Thompson, magic mentor to Penn and Teller and Lance Burton, to shoot a video at Louis’ house, which doubled as L&L Publishing’s studio.  L&L made instructional DVDs for lay magicians, where famous magicians performed in front of an audience and then revealed the secrets of those tricks.

The day of the attacks, I was in my apartment in San Francisco. Louis was in his Lake Tahoe home. We watched TV together over the phone as the second plane flew into the building. We watched as people flew in the air to their deaths. We watched as the buildings came down and terror-stricken New Yorkers ran past the TV camera.

Wolf Blitzer announced all planes had been grounded.

I turned to face the blue sky out the window, trying to grasp reality. “I can’t believe this is real.”

“Come home, “Louis said. “Get back here where it’s safe.”

I wished I were already there, with him and his beagle, Petie, where I wouldn’t feel so alone and helpless. We’d been together for nine months. I had moved into Louis’ house a few months earlier, but had kept the city apartment.

Louis loved the remoteness of Lake Tahoe and the safety of his anonymous house on the side of the hill in Meeks Bay.

“What if the Golden Gate Bridge is blown up while I’m on it?”

I decided to stay in San Francisco until we knew what was happening across the country.

Back in Tahoe, we had tickets to see James Taylor in concert at the Reno Hilton the night of September 22. Eleven days after the 9/11 attack. We were numb after watching the images on TV for too many days. Life across the country was starting to resume, but nothing was back to normal.

Louis was lying on the bed watching TV. I was in the bathroom putting on makeup. “I don’t know how to behave tonight,” I said. “It’s a concert, but I don’t feel like singing or clapping.”

Louis agreed.

“All those people on TV are showing flyers of their loved ones. They haven’t accepted that they perished. How are we supposed to act happy when such a horrible thing has happened?” Louis turned off the TV, walked over to me and said, “It’s James Taylor. We listen to his music and try to forget for a few hours.”

We sat in row 11 of the concert area, outside the Hilton. When James Taylor stepped on stage, the audience clapped politely.  After a few songs James Taylor sat on a tall stool, his guitar on his knee, about to start another song, when a jet flew overhead.  He placed his right arm across the side of his guitar, looked into the sky and said nothing. No one spoke. Was everyone else wondering if it was a military jet from nearby Fallon NAS and if there was another attack happening, like I did?  Or was it was a regular flight from Reno-Tahoe airport just across the highway? Regular? I wondered. Would there be a regular flight ever again?

James Taylor continued playing his gentle songs. I had grown up with them. I knew them by heart; so had everyone in my generation, but tonight the songs had different meaning.

Fire and Rain – “thought I’d see you one more time again”…Is that what the loved ones of those who died in the attacks thought?

“I’m going to Carolina in my mind”… Because we needed to mentally retreat to a happy place? I didn’t want to go into my mind. It thought only of the dark grief of the past eleven days.

Something in the Way She Moves…”She’s been with me now quite a long, long time and I feel fine”… Who is ‘she’ and can she make us feel fine again?

After another song or so, James Taylor spoke of his daughter, Sally, a musician who had been traveling in Arizona with her band when the attacks happened. She had driven to Reno and was with him that night. He brought her on stage and there was something so right about father and daughter being together during this time, that I sighed, releasing some of the fear I had held in my stomach since 9/11.  They sang together and looked into each other’s eyes. Even from row 11, I could see love between them – the real, human emotion that kept us a part of the living.

A few verses into the next song and Sally started sobbing. She tried to keep singing, but we heard sobs of grief through the microphone. Her dad kept playing and with fatherly love, he held her gaze until the song was over. She cried throughout the rest of the song. When it ended, he enveloped her in a protective hug.  We could see her shaking shoulders from her heavy sobbing into her dad’s chest. Tears rolled down my face. Louis wiped his eyes. Everyone around us was crying.

Sally had allowed us to feel again. She was with us and gave us permission to break from the numbness that had settled over us for weeks after 9/11. She showed us her humanness and relieved us from trying to keep it together. We had been through an unspeakable tragedy as a country. Human lives were lost, fear had been instilled in us and we were afraid of living again.  Sally had cried her way into our hearts and she and her father had shown us how to find our soul.

No video shoot of a famous magician could have happened at that time, even if Johnny Thompson had arrived in Tahoe. No one was in a state to be amazed by distraction and deception. No magic could have made us feel better. We needed love, not illusion.

 

 

 

 

 

 

 

 

 

A Hurricane Practice

Tropical Storm Flossie came to the islands, but missed our part of Oahu. We were prepared and waiting. And waiting.

We received texts, tweets, broadcasts saying she was making landfall between 8:45-9:45 PM. I had a flashlight and my cell phone next to me, We had flashlights and plastic tarps, food and water. But no Flossie. No rain. No wind, A huge clap of thunder to let us know she was nearby, but we went to sleep that night to the eerily still, humid night.

She was a practice run for us and that’s a good thing, because hurricane Gil is now forming in the Eastern Pacific and behind him is Henriette. I feel somewhat comforted by our preparations, but we found work to be done.

1. Our skylight won’t close.  I imagined it getting blown off and leaving us with a gaping hole in our roof.

2. I don’t know how to turn off the gas and electric.

3. It gets really still and muggy during a storm. We need a battery-operated fan, or two or three.

4. I gave myself permission to eat gluten. When the power goes out, filling food is more difficult to make. Bread can last a while and doesn’t need refrigeration. (But we do need an air-tight container.)

5. I like light. Even without power we can still entertain ourselves with games, books, puzzles, but none of that can happen if we’re in the dark. Lanterns, lanterns, lanterns.

6. A reminder from an unfortunate man on Maui: Don’t use water while a thunderstorm is happening. (He still has tingling in his hand from a lightning strike while using the kitchen sink.) Wash clothes and dishes and bodies well before the storm.

The best part of our dry-run hurricane; we connected with our neighbors. We checked in with each other and made back up plans to help if needed.  Something i didn’t have before preparing for Flossie.

Waiting on Flossie

I returned home early from a trip to California to prepare for Tropical Storm Flossie. The stores were crowded this morning, but no lines out the door, no empty shelves. A 3.5 earthquake happened while inside the grocery store, but no one noticed it.

We’re hunkering in now. And waiting. Some passing rain. Sun. Clouds. Repeat.

Storm clouds gathering.

Mayor Caldwell (of Honolulu) has requested that everyone get off the roads by early evening tonight. I may cook or clean or write. But I’ll probably be on Twitter or Facebook unless the power goes out.

Update: Just received word that Oahu residents are asked to conserve water. A shower first, then I’ll conserve.

I’ll be tweeting @sfcyn.

 

Father’s Day

We went to the cemetery to place some flowers at a grave site. In case I forgot I was living in a very different culture, I was reminded at the cemetery. Families were gathered across the grassy knolls, sitting in chairs around a loved one’s grave, telling stories, and having picnics. Almost every headstone had fresh flowers placed at it.

Father’s Day flowers at the cemetery. I replaced the fallen flowers.

Family is a big part of the way of living here. Family can be extended relatives, it can also be friends and neighbors you consider family. You’ll hear the word “ohana” used frequently to express that feeling. As we placed our flowers and watered them, I noticed the stone of the grave site near us.

Does Hawaiian-style living promote longevity?

She lived to 107. Is a strong ohana the reason for longevity? She had no flowers on her grave and the stone next to hers seemed to be of her son who died in 1965. Was she the last of her lineage to pass? Did her ohana take care of her all those years? I cleaned off the stone as best I could and wished her a peaceful rest.

Historic Pearl Harbor Tour

Since today is Memorial Day, I’m sharing photos of our tour around Pearl Harbor on Saturday. The Pearl Harbor Historic Tour is offered this weekend as a collaboration between the National Park Service and the US Navy. The tour guide said we could take photos so here they are.

Arizona Memorial

It started to rain as we passed the Arizona memorial and battleship row. We’d stop there on our return. First we headed to Torpedo Alley. Aerial torpedoes easily destroyed ships that lined this channel.

Torpedo Alley

We turned back to the main harbor area. I was looking back at torpedo alley when I realized a submarine was in front of me.

I hardly noticed the submarine.

We tried to exit the barricaded section of Pearl Harbor. We had to wait for the Navy to open the gates for us.

barricades

Turning to our right we passed the other side of Ford Island on our way to the USS Utah memorial. It’s known as the “forgotten memorial” because it sits in an area where active military live. The remnants of the Utah moved me. I envisioned what really happened that day by viewing this sight.

USS Utah. The Forgotten Memorial

Here’s a closer view of the Utah.

We turned then, stopping to view the small entrance to Pearl Harbor.

The small entrance to the harbor.

It’s because the entrance is so small that when the USS Nevada was attacked, she was heading towards open sea when she started sinking. Knowing she would block the small channel, they beached the Nevada on an area to the left and before the entrance.

The monument for the brave crew who beached the USS Nevada in order for others to reach open sea.

Back in the main harbor area where the battleships are, we passed the shipyard. No Ka Oi means “the best”.

No ka oi = the best

We passed the Missouri. I’d been on it before, but had never seen it from the water looking at her starboard side.

USS Missouri

And finally we stopped at the Arizona. It was a choppy water day so we didn’t see any oil or bubbles, but the shrine is always poignant.

Thank you to all who serve our country. Let’s remember those no longer with us and the sacrifices they made.