The Boy Who Taught Me How to See
“Sometimes the people we think we should feel sorry for are the ones who teach us how to see the world clearly“.
I was seven years old when my family moved to Anaheim–Garden Grove, California. We moved into a gated community. It wasn’t the best neighborhood, which is why the gates were there in the first place.
Our neighborhood was surrounded by Mexican and Vietnamese communities, and in 1977 there were often gang fights between the two groups. That was just part of the environment we lived in.
Another thing I remember clearly was that there were Catholic churches everywhere around our neighborhood. Right outside one of the gates near the building where I lived was a concrete wall with a metal gate between two concrete slabs. If you walked through that gate, it opened into a large park with a community swimming pool.
If you kept walking north through the park, you would eventually reach my elementary school, Woodbury Elementary.
I only went there for a few years, but so many things happened during that time. I could probably write a dozen stories just about that school.
Inside our condo complex there were several playgrounds. The main playground sat right in the center of the complex. It had a merry-go-round, a couple of slides, several swing sets, and a climbing structure. Everything sat on sand.
We spent entire days out there.
We built sand castles. We climbed. We ran around and played until the sun went down.
One day while I was playing with my friends, I noticed a boy sitting nearby on the sidewalk in a strange chair with wheels. A woman sat on a park bench next to him.
He wasn’t playing on the swings or the merry-go-round.
He was just watching us.
At first I kept playing with my friends, but I kept noticing him sitting there alone.
Eventually I walked over and asked him a very direct question, the kind only a child would ask.
“Why don’t you just get out of your chair and come play with us?”
He said he couldn’t.
I asked why.
He looked over at the woman sitting beside him. Later I learned she was one of his daytime nurses. She began explaining to me that he had a condition called muscular dystrophy and that he was completely paralyzed from his head down to his toes.
She had to explain to me what the word paralyzed meant.
She told me that he couldn’t play the way other kids played, but that he still enjoyed playing — just in different ways.
So I asked both of them, “If you play in a different way, how do you play?”
She smiled and said that if I got permission from my mom, they could take me back to their home and show me.
They had lots of things they played with there.
So I ran home and asked my mom if I could go with them.
I told her I had made a new friend who was in a funny chair and that his nurse said I could come over and play with his toys.
My mom said yes.
I ran back to the playground, excited.
I remember walking beside him and his nurse as she pushed his wheelchair. At one point I simply reached over and took his hand.
We walked like that all the way to his condo.
Inside, I met his mom. She made us lunch, played music, and brought out toys for us. She also brought out a small tray that fit over his wheelchair so he could have a place to play.
Then she brought out something really interesting.
An aquarium.
In California there were tiny little lizards everywhere, and he loved collecting them. They didn’t live very long, so he would usually have them for a week or so before replacing them.
We spent hours decorating their little world inside the tank — adding grass, sticks, and bits of plants to make it look like a real habitat.
Those were the first few days of our friendship.
Over time I learned that his family was very Christian and deeply involved in their church. Eventually they asked for my mom’s phone number so they could invite me to attend church with them.
Soon I was going with them to services on Sundays, Saturday services, and even kids’ church programs.
Eventually I joined a youth group called The Candle Factory.
He and I attended every Wednesday night for several years.
Our friendship grew incredibly close.
In fact, I spent so much time at his house that later in life, when my family would sit around talking about childhood memories, I often felt like I hadn’t grown up in the same house as them.
Most of my childhood memories were with his family.
After church we always went to Bob’s Big Boy for lunch or dinner. Every single time. We went to church four times a week, which meant we went to Bob’s Big Boy four times a week.
We also went everywhere.
Disneyland.
Knott’s Berry Farm.
Magic Mountain.
Six Flags.
Calico Ghost Town.
The Wax Museum.
Universal Studios.
His mom believed strongly in creating memories. She even bought us matching scrapbooks so we could keep souvenirs from every trip.
Tickets, receipts, little trinkets — anything that reminded us of the day.
Years later that scrapbook was ruined in a heavy rainstorm after being left in a box on my back porch. My daughter eventually discovered it and carefully salvaged what she could.
Today I still have a gallon-sized bag filled with those rescued pieces of my childhood.
Because of my near-drowning experience when I was younger, my immune system had been badly damaged. I was often sick and very small for my age.
Even as a high school senior I was only about 4 feet 1 inch tall and weighed barely seventy pounds.
Eventually doctors diagnosed me with Hashimoto’s disease and I began taking levothyroxine, which I still take today.
Despite my frequent illnesses, he and I were inseparable.
We went everywhere together.
Sometimes we even left the gated community on our own and explored nearby churches and little corner stores.
He had a huge crush on me.
He used to say that one day we were going to get married.
One time we even staged a pretend wedding in a Catholic church. His nurse played every role imaginable — priest, maid of honor, best man, flower girl, and ring bearer.
She was the best nurse anyone could have asked for.
Sadly, that dream of marrying never came true because my family eventually moved away when I was eleven years old.
But before that happened, there were many unforgettable moments.
One night his mother called my mom in the middle of the night.
He had become very sick.
Doctors believed he might not survive the night.
His condition often caused severe pneumonia, and when that happened he had to sleep inside a machine called an iron lung to help him breathe.
When I arrived that night, he was already inside the iron lung.
I sat beside him on a little stool. He wasn’t awake, but I could hear him struggling to breathe. His face was red with fever.
I began making promises.
I told him that if he made it through the night, I would give him one hundred kisses.
Eventually his mom sent me home.
The next morning she called again and asked my mom to bring me over immediately.
When we arrived, he was sitting in his wheelchair — alive.
And ready to collect on my promise.
His nurse had bathed him and dressed him nicely.
And I kept my promise.
It took forever.
But he laughed the entire time.
Another time, we secretly decided to raise money for the Jerry Lewis Muscular Dystrophy Telethon.
We collected coffee cans, milk jugs, and anything else we could use to hold money. Then we went door-to-door around the neighborhood asking for donations.
People were incredibly generous.
After about two weeks, we had containers filled with coins and dollar bills.
Eventually the nurse had to help us because we had no idea what to do with all the money.
When the telethon came around, she drove us to the event.
We carried in container after container of change.
They were so heavy.
To our surprise, we were invited onto the stage with Jerry Lewis himself.
Together we donated $22,000 that we had raised from our neighborhood.
Meanwhile, behind the stage, his nurse was on the phone trying to explain to his parents why their son had suddenly appeared on national television.
Later, the Make-A-Wish Foundation granted one of his greatest dreams.
At halftime during the Super Bowl in California, a helicopter flew him into the stadium.
On the field, the Los Angeles Police Department presented him with a German Shepherd puppy.
The puppy would later be trained as a police canine and then returned to him as his own dog.
It was one of the greatest days of his life.
Throughout our friendship we talked a lot about disabilities.
People often stared at him.
They whispered.
They wondered what was wrong with him.
But he once told me something that stayed with me forever.
People with disabilities don’t want to be judged for what they can’t do.
They don’t want people staring at the equipment they use.
They would rather someone simply walk up and ask them what their life is like.
Just like I did that day on the playground.
Because of that simple question, a lifelong friendship began.
He eventually graduated high school with honors, went to college, became a defense attorney, and built a successful life.
He married a woman who also had muscular dystrophy.
They lived together independently with nurses assisting them around the clock.
Doctors had predicted he would die very young.
Instead, he lived to be 36 years old.
In the end, pneumonia led to sepsis and he passed away.
But his life left an incredible mark on mine.
Because he was the boy who taught me how to see.
That moment changed the way I see the world.
“Have a story that changed how you see the world”?
