It wasn't very long ago when talking about my dad intimidated me. I remember going to see a movie with my family when I was a teenager; we were early so we went to the mall to kill time. While we were there I took frequent trips to the washroom and spent strange amounts of time in stores by myself
"What are you doing Andrew?" Asked my irritated mother.
I mumbled a stupid answer that didn't make any sense. I didn't tell her I was trying to avoid being seen with dad. What if someone from school saw me? How would I explain it to them?
I was four years old when my dad learned he had ALS (Amyotrophic Lateral Sclerosis), a degenerative neurological illness commonly known as Lou Gehrig's disease. Most people living with ALS usually die two to five years after their diagnosis because they can no longer eat or breathe on their own. The progression of the illness is unpredictable yet relentless and there is no cure.
A few years after his diagnosis my dad could no longer breathe independently and he decided to use a ventilator. He wanted to prolong his life for as long as possible to be around for my two siblings and me as we grew up. My dad is still alive today but is now completely paralyzed. He has limited movement of his face and eyes and he communicates by blinking.
It was difficult to articulate my anxiety around telling others about my dad's disease. Maybe it was because I wasn't comfortable with people pitying my family, or maybe it was simply a difficult topic to bring up during everyday conversations. I couldn't relate to those who spoke publicly, and admirably, about their personal experiences with terminal illness. I was uncomfortable with the narratives that often seem to emerge that divide the sick and dying into categories: the survivors who won the fight and those who lost -- the ones who lived and the ones who died. There came a point when I decided that I had to overcome this anxiety and I did so by making a documentary.
I decided to chronicle the lives of another family living with ALS and I came to meet a young father named Brad Katz and his wife Deecla. Brad had three young children and recently learned he had ALS.
The similarities between our families were unbelievable: both fathers were diagnosed at a young age and had three small children at the time of diagnosis. They were both very independent and proactive men -- my dad was an ambitious young father and Brad was a technical wizard and amateur acrobat.
It took a lot of convincing to get Brad and Deecla to trust me as a filmmaker but they eventually agreed because they wanted an honest record of Brad's life that their kids could cherish in the future.
In spite of the similar circumstances between our families our two stories are very different. Brad knew he could not live as a paralyzed man and he chose not to use a ventilator. He died two years after his diagnosis.
Shortly before Brad's death, I remember speaking to Deecla about her decision to participate in the documentary.
"Initially I wasn't very interested in spreading awareness about ALS, that wasn't a large part of my decision," she said. "But after seeing Brad live with this terrible illness first-hand, I really want people to know more about it."
Spending time with Brad and seeing the unrelenting progression of the disease heightened my admiration for my dad's decision to use a ventilator. The future he chose was one full of uncertainty and unimaginable challenges. In spite of the two different paths they chose, both men expressed an admirable conviction in their choices, choices that, to many, would seem impossible to make.
Like Deecla, I never intended this film to be an ALS awareness tool but, while making it, I realized that this obscure disease really does need to be brought out of the shadows.
I now know that I can't let shyness get in the way of sharing my family's story. My documentary Just As I Remember screened at Hot Docs this April and l was thrilled when my dad told me he would be able to attend. This time, I entered the movie theatre proudly by his side.
For more information about the film: www.justasiremember.com