What Remains

Amanda was the first friend I made at Royal West Academy, in Montreal. When I walked into art class as a new tenth-grade student, I scanned the room in quiet panic, noticing how everyone was already grouped together. Then I locked eyes with Amanda—the only other Asian girl in a sea of white students. She flashed me a grin, and I immediately made my way toward her.

We quickly became close friends. Over the next two years, we sat together in every class, laughing often. We stayed up late for FaceTime study sessions that often veered off topic. We organized summer trips to the Calypso waterpark, and I helped Amanda plan her eighteenth birthday party and pitched in with her family to set everything up.

We bonded over our shared experience as Asian-Canadian teenagers in a predominantly white community. As visible minorities, and as children of immigrants, we both struggled deeply with our identities and faced pressure to stay thin, study hard and excel.

Humor helped us to cope, and I deeply savored Amanda’s dry, sarcastic wit. She hates compliments, avoids all forms of physical affection and is blunt and straightforward. I could always count on her to share her unfiltered reactions. When I asked her if a new shirt was unflattering, she hesitatingly said, “Yes.” And when I cried over an A-, she exclaimed, “Oh, come on, Grace Lin!”

When we applied to university, in 2020, I was accepted into the medical program at the University of Montreal, and Amanda chose to pursue a psychology degree at McGill University, intending to apply to medicine after she finished.

We stayed close throughout college; then, during the COVID pandemic, we gradually drifted out of touch. We’d talk about getting together to hang out, but our schedules never quite lined up. Still, we regularly sent each other funny Instagram posts and TikToks referencing our inside jokes.

On May 12, 2022, I learned that Amanda had been diagnosed with amyotrophic lateral sclerosis, or ALS.

In fact, she’d been diagnosed the previous October—five days before her twenty-first birthday. Having struggled with various symptoms and exhaustive medical investigations since the summer, she hadn’t told anyone. Later, she confided that the illness had severely affected her gait: She’d had to be driven downtown to her classes. But she’d hidden this from her friends. Throughout all of our social-media banter, I’d never suspected anything was wrong.

Amanda shared her diagnosis with everyone, including me, through an Instagram post. It was, in fact, the only post on her entire profile. At first, reading the caption, I thought she was making a twisted joke. Then came disbelief. Then, sadness and pain—and finally anger at her for not telling me personally.

I felt guilty for being angry. I understood that I likely wasn’t her primary confidant anymore, and I recognized the emotional and psychological pain that she and her family must have been suffering. Still, I was angry at her, and at the injustice of the world.

A few hours later, Amanda texted: I wanted to text you before but its like thats kinda awkward, so I was like maybe insta is easier. She apologized for not telling me sooner and said that she’d wanted to, but didn’t know how to shift away from our previous lighthearted tone.

That night, we spoke on the phone for the first time since college. As we caught each other up on our lives, it was strange to hear her speaking more slowly than before, and with a noticeably nasal tone.

That summer, Amanda and I hung out nearly every week. I invited her to food festivals, parties and chalet trips with other friends. She came to my soccer games and sat quietly on the bench.

Before every event, we’d have the same conversation.

“I don’t think I want to go anymore,” she’d say, tugging at her shirt. “Everyone just stares.”

“Everyone will be happy to see you,” I’d reply, knowing it wasn’t enough.

She’d shake her head. “I am so sick of their pity.”

I never knew what to say to that.

She’d sigh, then say more quietly, “I look so different. I’ve gained weight…Don’t you dare leave me tonight, Grace Lin.”

The revival of our friendship has given me a whole new understanding of Amanda. She tells me how bitter she feels when she sees people our age experiencing new and exciting things. She shares the details of her medical follow-ups, knowing that I’ll understand.

Still, I never see Amanda as a patient—even when she lets me practice neurological exams on her. To me, she’ll always be the friendly girl I met on my first day at a new high school; the friend I laughed with endlessly in chemistry class; the one I can always trust for honest advice.

Amanda is one reason I work hard to see each of my patients through the eyes of their loved ones. I hope the medical professionals who meet Amanda—past and future—can see her as I do.

It’s been hard to stay in contact during my third- and fourth-year clinical rotations. We text on a regular basis, but meet only every few months. Each time we get together, she’s physically weaker. A stubborn refusal to use her walker led to a few bad falls; now, though, I never see her without her wheelchair.

Her hands are increasingly contracted, and her text messages are getting shorter. We don’t talk about it. She also has pseudobulbar affect symptoms (sudden, uncontrollable episodes of laughing or crying) and sometimes feels embarrassed to burst into laughter long after a joke has passed.

It’s difficult to think of Amanda being in an end-of-life situation. Despite her constant jokes on the subject, I tend to forget that she’s terminally ill—but every time I see her, I’m bitterly reminded that her disease has progressed. It’s hard not to show sadness when I see her, but I feel it’s my responsibility as her friend to keep our conversations light and full of humor, as they’ve always been.

Amanda tells me that she only truly felt the weight of her diagnosis when she deteriorated to the point where she couldn’t do basic tasks. Little is known about juvenile-onset ALS, and she feels scared facing an unclear prognosis.

Confined by her failing body and uncertain future, she doesn’t know what to do with her free time. An antidepressant has been added to her list of daily medications. She joins clinical trials—hoping not for a miracle but “to give back to science.” In one trial, she had to drink a foul-tasting medication; I tasted it once and nearly threw up. But she drank it uncomplainingly twice daily, “doing whatever I can to improve my chances.”

Amid it all, Amanda has found the strength and resolve to advocate for ALS awareness on Instagram and TikTok—platforms that we once reserved for humor.

I remember watching her position herself in front of the camera, hit the “record” button with shaky fingers, then say: “This aggressive and ruthless disease strips its victims of all autonomy, leaving only their brain and eyes functioning. As the body becomes just a shell—turning its owner into a prisoner within—the idea of what it means to truly live shifts. Simply being alive no longer equals living.”

Preferring to “die with dignity,” she has made the decision to have medical assistance in dying (MAiD), which allows terminally ill adults to ask their doctor for a pharmaceutical prescription to end their life peacefully.

Having Amanda as a friend and witnessing her journey with this illness has changed my perspective on life. It has taught me a lot. I’ve learned that grief is recurrent and can occur long before death itself. I have learned that illness and pain can reignite connections and build relationships. I often wonder guiltily if I would have put the effort into rekindling our friendship had she not been sick. And I’ve found gratitude for being able to do what I do—and for the problems I’m lucky to have.

I’m sad that Amanda can’t have the same options. With every step I take forward, I feel the ache of leaving her behind.