How My Dad's ALS Lesson Saved My Life 16 Years After He Died
My dad and I had a tough relationship. He was 46 when I was born. From stories, it sounds like he was a little bitter about me being born because I “ruined” his golden years. So maybe that was the cause. Or maybe he just didn’t know what to do with me. I wasn’t like my siblings. I still am not like them. I tend to be more emotional, a loner and someone who tries desperately to make everyone happy. He was big into politics and community service, so I joined in his causes to prove to him I was good enough.
He had a heart attack when I was 5. I don’t remember much about it except that he had staples all the way down his chest. He’d become angry more easily. So his job switched him to the night shift.
For many years he became the man who slept in my mom’s bed during the day.
That was, until he became sick.
I was 14 when it happened. It started with him not being able to turn the car key. I remember watching as he reached over the steering wheel and used his left hand to turn the car on. He looked at me and told me not to tell my mother.
He then started having trouble walking.
That’s when my family had him go to the doctors.
He went to doctor after doctor, each trying to eliminate what he could possibly have.
I didn’t really get it. I also didn’t really think much of it.
In October of 1999, he was diagnosed with ALS.
It was the first time I ever saw my dad cry. He sat in the living room with my sisters and my mom crying about how it wasn’t fair, how it didn’t make sense. I was confused, and my sister pulled me aside to explain what ALS was.
ALS, better known as Lou Gehrig’s disease, is a motor neuron disease where the neurons of the muscles are damaged or killed, causing the body to paralyze.
It has no known cause. And it has no known cure.
And my dad had it.
For six months, I watched his disease progress.
But in those six months he taught me the lessons I needed 16 years later to live.
Sixteen years after his diagnosis, I was diagnosed with Stage 3C ovarian cancer.
Much like my dad, I didn’t see it coming. I was diagnosed in the middle of surgery for something else and woke up a cancer survivor who had been split from breast bone to pubic bone. They’d removed multiple organs.
Memories of my dad immediately came back as I laid in ICU.
And so the lessons once taught, ones I never realized were things I would need, came to use.
In the time after his diagnosis, my dad had to retire from his job. He had to stay at home and learn to depend on people and ask for help — something that pained him greatly.
Suddenly, I was stuck in a hospital bed, dependent upon everyone around me. I couldn’t stand on my own. I needed help walking, going to the bathroom, sitting up and doing everything I had taken for granted for years.
I kept thinking of my dad and how he gave in to the need for help. I remembered not caring about what it looked like and just helping him stand, helping him to the bathroom, giving him medicine and doing whatever I could. I never looked at him as weak or pathetic.
So even though that’s how I felt, I had to push those feelings aside and learn it was OK to ask for help.
The other lesson was a bit bigger: My dad was also always saying thank you to people. It was weird because he wasn’t always that way until after he was diagnosed. He told me once that sometimes people need to hear you appreciate them or else they lose faith — faith in you, in society and in the world. Plus, the world is different when you know you have little time left. You learn what matters.
My mom will tell you I spent my entire time in the hospital thanking people. I thanked the nurses, the doctors, the cleaning people, my mom, my boyfriend, everyone. My dad was right. You really do learn to appreciate everything.
Another lesson taught me on how I wanted to handle my life: I always was bothered that my dad never wanted a feeding tube when he began to struggle with eating and that he stopped going to physical and occupational therapy. He told me one night when I stayed up with him that you have to one day choose between quality and quantity. He had chosen quality.
In the course of making medical decisions, my family and loved ones have been shocked at some of my choices, but I now understand my dad’s perspective. I’d rather go out knowing I lived my life rather than just survived it. Surviving isn’t living to me; it’s holding a space.
But the biggest lesson I learned and the most important is what really has kept me alive.
One night when he was really struggling I was the only one awake caring for him. Often, my mom cared for my dad during the day or the nurses did, and I stayed awake with him all night but slept during school. We always seemed to watch “Indiana Jones.” It always was on the History Channel late at night, and my dad loved those movies. It was one of the few things we truly had in common.
He had been drifting in and out of hallucinations all night. I was exhausted from trying to keep up with them, making sure he didn’t try to run off again like he had done a few days earlier or when he began screaming that he saw a car accident when he hadn’t left his chair in days. I laid on the couch on my side with one eye on the TV and the other on him.
I always could tell when he had stopped hallucinating. His eyes were no longer fixed and he sat up more.
He smiled and gestured to the TV. It was the surprise dinner scene in “Temple of Doom” where they are served snake, bugs and monkey brains. I was snickering. The scene always made me laugh.
“Jo, you need to remember to always eat your monkey brains.”
I looked at him confused. “What?”
“I need you to always remember to eat your monkey brains.”
“Are you hallucinating again? That’s disgusting.”
“No, Jo. You always need to remember to laugh. Don’t always be so serious or else you’ll miss things, new things to try or important things. Just laugh and eat the brains. Like me.”
I just shook my head. “Sure, Dad.”
And we went back to the movie.
I’ve often thought of that conversation and how my dad was after he was diagnosed. He always played around after diagnosis. One day when I came home he used his breathing machine to pretend to be Darth Vader when I walked in. He even pretended one or two hallucinations to see what he could get away with. He made fun of his own hallucinations. He laughed more after getting his diagnosis than I heard him laugh in my whole life.
I didn’t understand that lesson until a couple months after my diagnosis.
I sat by myself for the first time in months when I was alone in my house. I’d had my mom there forever, and when she left, my boyfriend stepped in. But now there were no nurses, no caregivers. It was just me left to fend.
I had spent months crying every day, unsure if I’d ever get better, often hurting so badly I’d give anything for the pain to stop.
I sat in the chair and stared at my scar. I could still see the little pin prick marks from the line of staples that had held me together. And my mind drifted to my dad.
For the first time in a long time, I began to laugh.
I don’t know why it struck me as funny, but in that moment is when I realized my dad was trying to tell me how to truly live life.
I wasn’t living feeling sorry for myself and crying. I was wasting what I had.
I got up and went to the bathroom, where I stood staring in the mirror at myself. I smiled in the mirror.
I looked ridiculous. My clothes were enormous, my hair was all over the place from lack of care, my scar looked like something out of a Batman movie, and I just looked like a totally messed up version of myself.
And I giggled.
I decided I was done being sorry.
So I began to find the humor in things. I made jokes and was sarcastic with the nurses at my oncologist’s office. They would grow to love when I came and would begin picking on me from the moment I arrived. My doctor and I began sparring back and forth to the point where interns were told I was feisty and to be prepared.
I took it further with refusing to wear normal wigs and wore bright blue, purple, pink, white, and black wigs with wild hats and headbands.
I bought fun t-shirts for chemo like my Budda t-shirt that says, “Let Shit Go” or my dinosaur in tar t-shirt that says, “I woke up this way.”
The more I found ways to laugh, the more I was able to handle what was going on.
I didn’t take things too seriously. Don’t get me wrong — my health was serious, and I did cry, but I could move through it by finding the humor in everything.
Each thing I got through got me better. I walked on my own, I drove again, I could do normal things like grocery shop. I could work. And I got braver. I went to a conference in Chicago alone, and I began finding ways to improve at work.
And my laughing and being happy made it easier for my loved ones. My mom calmed down, even though some say she’s still overprotective. My siblings understand when I’m laughing I’m OK, but if I cry it’s something serious. It put my friends at ease and made them less afraid. People stopped treating me like I was made of glass, and I became more than just another cancer patient. I was me again.
Laughter is what gives me strength. It’s what helps me push through the bad. It’s what keeps me grounded and rooted in myself. Laughter makes me a person, not my disease. If I had kept going at the rate I was before that day when things switched in my head and I saw my dad in my scar, I don’t know if I would be where I am today.
I’m still alive and laughing.
My dad passed away April 1, 2000 at home. He fought hard, but I like to think he had the last laugh since he died on April Fool’s Day, when we had to spend the whole day convincing people we weren’t joking that he had passed away.
We had a hard time together until those last six months of his life. I often wish I got more time with the dad.
But his last six months of life have saved my life 16-18 years later.
I just had to remember to eat my monkey brains.
Dedicated to Thomas Joseph Wilson Jr., 3/3/39 – 04/01/00
Happy Birthday, Dad, wherever you are.