FROM DISBELIEF TO ADVOCACY: A SON RESPONDS TO HIS FATHER’S ALS DIAGNOSIS
Published in DYING TO MEET YOU June 23, 2021
Brett Wilson was just 22 years old in the summer of 2019 when his father Rick was diagnosed with ALS.
ALS stands for amyotrophic lateral sclerosis and is a fatal nervous system disease.
In Canada, Rick was unable to secure a definitive diagnosis and so he travelled to the U.S.
“The verdict that he ‘might have ALS’ was not good enough for us,” Brett explained. “We needed clarity about what is essentially a death sentence of a disease since ALS involves a usual prognosis of a 2-5 year lifespan after the onset of symptoms.”
While awaiting confirmation of the disease, Brett refused to believe that his father had the terminal illness.
“I refused to believe it or talk about it,” he told me. “I kind of shunned my extended family who wanted to talk about it and, of course, for a while, it’s all they would talk about.”
Once Rick received the formal diagnosis, Brett remembers that his own life became “a cloud of stress.”
His grades took a hit in his fourth year of university and he marvels at how something about which he had previously known next to nothing became a consuming and omnipresent reality.
Brett offered the analogy, “When you get a new car, it’s the only one you see on the road and you start to see it everywhere. That’s what it’s been like for me with ALS.”
Rick began getting treatment in the US and undergoing clinical trials for a disease that currently has no cure.
With the particular trial available only in the U.S., Brett says that his father was in a “loop of quarantines” each time he crossed the border and he lamented that his father sometimes faced hassles from border security for his back-and-forth travel amidst the pandemic.
When I asked Brett about how his father handled the diagnosis, he said that his father conceals his emotions well but that he sometimes expressed guilt for putting a burden on the rest of the family.
“Sometimes he would say, ‘I’m sorry,” and I always thought, ‘C’mon, Dad. What do you have to be sorry about?”
That is Rick’s character, Brett attests.
“It is as though everything else is more important than what is happening to him,” Brett told me with clear admiration. “He always tells my mom he feels better after the trials, but that is probably more for her sake.”
Still, Brett could detect to some extent the toll the loss of muscle control was having on his dad.
It was hard for Rick to be demoted from some of his work responsibilities and, since he enjoys being active and fixing things, it was difficult when he fell over once when trying to fix a fence.
I asked Brett to share with me about the impact of the diagnosis on his family life.
To this he said, “The diagnosis definitely brought my family closer together. It helped my relationship with my sister. It has been hard to see my dad in a declining state but, at the same time, I want to be there for him. This is a big conflict internally and, I guess, it’s the conflict between selfishness and selflessness. Of course I’d hope I could be more selfless. At the same time, we try to maintain normalcy around my dad and maybe tell some jokes to lighten the mood.”
Following Rick’s diagnosis, Brett’s younger sister raised more than $20,000 toward ALS research and his mother became very personally invested learning all that she could about the disease.
Seeing his mother and sister’s contributions inspired Brett ask himself what he could do.
Having had a longstanding passion for politics, Brett started working in federal politics in the fall of 2020.
“When I got to Parliament Hill, I thought to myself: I’m here. I have a parliamentary email account now. Let’s see what I can do.”
A positive kind of sibling rivalry motivated Brett to challenge himself with the thought, “If my sister can raise 20k on Facebook, let’s see what I can do with a staffer pass.”
Brett launched what he is calling the “Race to 338” campaign – his personal initiative to try to meet with every member of the Canadian House of Commons to brief them about ALS.
Since his family does not have much interest in politics, Brett considers himself the black sheep in the family. Still, they are appreciative that he has found his own way to let his personal passion intersect with the need to advocate for his father and for others living with ALS.
“I have taken a 180-degree turn from not wanting to talk about ALS at all to now, it’s all I want to talk about,” Brett noticed in a moment of reflection on the whole trajectory.
When I asked Brett about the reactions he gets from MPs, he says that what struck him most was when a particular MP received the informational paper he shared with him and took the initiative to discuss it point-by-point.
What does Brett want legislators to know about ALS?
“I want them to know that it is very time-sensitive. Also, ALS does not only affect the person who has it; a person’s spouse, children, and even his parents are impacted. I was once in this category – oblivious until my family was inside it. Now, with my dad’s diagnosis, all of our lives are shaken and so when I have meetings with politicians, I try to help them to see it a bit better from inside the experience.”
As Rick approaches two years since receiving the diagnosis, Brett feels an increasing sense of urgency. Accordingly, it can be disheartening when a politician is non-committal or gives only a tacit agreement to set up a meeting “when the timing’s good.”
Next, I asked Brett what he wants his father to know by all his efforts and advocacy.
“I haven’t necessarily expressed it like this before,” Brett started, “but I guess I want to tell and to show him that we’re fighting for him, for him to know that he is definitely the one inspiring me to do this.”
I also asked what Brett has learned from his father’s character in the midst of this struggle.
Brett says it was in the context of a TV interview that he heard his dad share a favourite verse from scripture: “Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” (Phil. 4:6-7)
“I don’t know if I could have his strength in his position,” Brett admits. “His strength has definitely changed my mindset toward having peace in the chaos and trusting the plan. When I watched his interview, I thought: I ought to try to live up to that.”
Now, Brett is resolved to trust the plan of meeting with as many politicians as possible to raise awareness while trying his best to maintain his peace amidst the difficult circumstances.
So far he has met with 17/338 parliamentarians in order to brief them on the disease and to get their verbal commitment to take action whenever any pertinent legislation comes up in the House of Commons.
“This is something I intend to finish,” he says. “Once you’re a part of it, you want to finish what you’ve started.”
Brett recalls his days in high school rowing where the mantra was, “You don’t stop until you hear the horn.”
“The horn is a cure for ALS,” Brett says with determination.
It was moving to learn of this father-son relationship and it made me recall what C.S. Lewis said of George MacDonald – that his relationship with his father “was the earthly root of all his wisdom. From his own father, he said, he first learned that Fatherhood must be at the core of the universe.”
All the best to Brett in the Race to 338 and beyond as he honours his dad by his efforts.