Amanda Tam: Speaking for people who have no voice

Diagnosed with ALS in 2021, Tam earns her Bachelor of Arts in Psychology
Amanda Tam receives the ceremonial tap on the head from Chancellor John McCall MacBain during the Arts convocation ceremony on June 7Owen Egan / Joni Dufour

In the fall of 2020, Amanda Tam was living a life pretty typical for a McGill undergrad. Working towards a BA in Psychology, Tam was doing her best to balance school, friends, part-time work, and outside activities. She was starting to think about life after school – moving out of the family home and starting her career.

But in January 2021, Tam’s body began sending signals that something was wrong. “I noticed fasciculations in my fingers as well as my left index finger bending,” she says. “I began to feel weak in my legs, and my gait pattern was changing slowly, making running challenging. I also lost my grip strength, finding it hard to open Ziplock-sealed bags.”

Ever the fastidious student, Tam started researching the symptoms, and her findings were not good. In October 2021, just five days before her 21st birthday, her worst suspicions were confirmed. She was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a debilitating terminal disease rarely seen in young people.

Following the initial diagnosis, a number of Tam’s friends and family members suggested she suspend her studies. Staff members at the Neuro urged her to take a reduced course load to reduce stress. Tam would have none of it. “I’m stubborn,” she says with a laugh.

“After spending 17 years of my life dedicated to school, it didn’t seem right to quit at the finish line when I could clearly see it,” she says. “My goal was to complete my degree within the three years it would ‘normally.’ I was determined to be done within the full-time student schedule. I took a summer semester in 2022 and took five courses (15 credits) in both semesters this last year.”

Support team

But Tam would be the first one to tell you that stubbornness only goes so far.

Worried that people would look at her differently, she originally kept her condition a secret from everyone but her boyfriend and immediate family. When she finally told others, she was amazed at how they rallied around her.

“People couldn’t be more supportive, providing their time and energy to get me to my appointments, spending time with me at the hospital, and offering me notes from class if I couldn’t make it,” she says.

Tam also praises the support she received from McGill’s Student Accessibility and Achievement office; Daniel Pratt (an assistant professor in the Department of Languages, Literature and Culture; and the staff at the Neuro – especially Dr. Angela Genge.

“Dr. Genge is a phenomenal doctor and a trailblazer for all women. She is a globally recognized physician and I trust every decision she makes with me,” says Tam. “She pushes science forward for ALS and I couldn’t be more thankful to have someone like her as my doctor.”

Voice for the voiceless

Remarkably, given the devastating nature of ALS, Tam has remained resolutely positive. Her father, Peter Tam, looks at her with amazement.

“She’s everything to me and my wife. When she was diagnosed it shattered our universe. Everything we thought was going to happen in her future totally changed,” he says. “After the initial diagnosis, I couldn’t understand how well she took it. I was falling apart. But Amanda just stayed strong, stronger than I ever imagined.”

Peter Tam says a lot of that positivity can be traced to his daughter’s determination. “She’s always had goals and has always worked so hard to achieve those goals,” he says. “Ever since she was a child, she always said she wanted to graduate from McGill. And she still has goals. She wants to work, she wants to travel.”

“She mentions that her and her boyfriend are thinking about getting a place together – and, being her father, I want to keep her as close to me as possible. So, I tell her, ‘you can live here!’” he says with a laugh. “She just gives me a look and the conversation stops.”

“In the end, I just want her to live her live her life as fully as possible.”

Raising awareness

“If I compare myself to people my age, I sometimes feel sad as they have their life and careers ahead of them, and I was stripped of that opportunity,” says Amanda. “I knew that if I sulked around about being terminally ill, my situation would not change. I didn’t want people to pity or feel sorry for me so I wouldn’t do that to myself.”

“Many patients try to separate themselves from the disease, and I know I am more than just a disease, but I also learnt to live with it instead of fighting it. Most days, I don’t think about it because this is what my life has become, and I think this mindset is what’s keeping me strong.”

Tam chronicles her medical journey on Tik Tok with an ongoing series of short videos – mostly using humour.

“I definitely use it as a coping mechanism. I think its important to stay positive as much as possible and if I can find a way to poke fun at my situation and to share it with others, why not?” she says. “I am very private, but I knew it was important to educate and spread awareness of such a rare disease. Many people only know it because of the ice bucket challenge, but I want my platform to provide humour still while sharing my situation with others.”

Peter Tam recalls that soon after the initial diagnosis, Amanda had a new goal. “She said, ‘I’m going to use my voice for all those people with ALS who have lost their voice.’ Then she started Tik Tok, she’s been interviewed many times… she’s out there. I’m so proud of her.

On to the next adventure

On June 7, Amanda Tam sits on a bench outside the white Convocation tent on Lower Campus. Just minutes before, she had walked across the stage to collect her Bachelor of Arts in Psychology. Eschewing tradition, Convocation organizers agreed to let Tam accept her undergraduate degree before everyone else (PhD and Master’s recipients usually go first) because her condition leaves her fatigued.

Tam is smiling, smiling because she made it. Three years, just as she planned.

“Getting to the finish line was a whole obstacle in itself,” she says. “But I couldn’t be happier with the outcome. This was always my dream school ever since I was a kid. Being able to graduate and have McGill as my alma matter is super cool.”

Tam is also smiling at the whole Convocation experience, from the “chaos” – “I was in everybody’s way!” – to the pomp and circumstance – “I didn’t know the tent was going to be so grand. It was very McGill.”

And she is smiling because she gets to share the moment with friends and family. “It is really special because they’ve gone through all this with me – especially my parents – driving me to appointments and moving their schedule to fit mine,” Tam. “Everyone is so happy.”

But the indefatigable Tam saves her biggest smile for when she is asked about the immediate future. “This summer I’m going to Punta Cana with my friends and then to Spain and Portugal,” she says. “I want to travel as much as possible and experience different cultures. I want to do this while I still have my mobility and can walk,” she says.

“I want to do as much as possible on my own terms and independently.”

If you would like to help Amanda Tam travel to new countries, visit her GoFundMe page

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P-O
8 months ago

This is something I guess we’re gonna see more and more often as the pressure to succeed increases steadily each year. It will not always manifest itself through ALS, but in many other ways as well depending on the different genetic predispositions. Humans are not built (or any other life forms in fact) for continuous stress. Remember the good old Hans Selye from McGill and his theory on stress. How about we collectively learn to listen to our body when it asks us to take a break? How about we build a world where there’s room for everyone instead of… Read more »