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When her life is over, she’ll have lived

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Elsie Tellier

Elsie Tellier’s Harvard experience, starting with her decision to apply, is inextricably tied to her diagnosis. She was 12 when she learned that she had cystic fibrosis, a progressive and lethal lung disease that claims most patients before age 40. As she and her family grappled with the news, Tellier made plans for living her life to the fullest.

“My hope is to be productive and do good things with the time I have left,” said the Leverett House senior, who is studying sociology and classics. “I have a life plan to do what I can to help others.”

Born in Winnipeg, in the Canadian province of Manitoba, Tellier was an infant when her mother died. An aunt who helped raised her — a Mexican physician who served poor communities in her home country — was “a driving force” in the future Harvard student’s youth, sparking a passion for humanitarian work that last summer led her home to Manitoba to interview foster families for senior thesis research on indigenous children with fetal alcohol spectrum disorder.

“My province is very poor,” Tellier said. “It can be very shocking and very sad. Ten-year-olds shouldn’t be killing themselves because they aren’t given the help they need.”

Elsie Tellier.

Stephanie Mitchell/Harvard Staff Photographer

Michael Stein, co-founder and executive director of the Harvard Law School Project on Disability, taught Tellier in a Kennedy School course on global disability law and policy and serves as her faculty adviser.

“Having to engage with additional challenges has given Elsie experience and expertise in being a problem-solver, and a well-balanced perspective,” he said. “Her experience here is both one of great community and great friends and institutions and mechanisms, but there are also times when someone like Elsie can feel isolated, with her perspectives unacknowledged. Still, she doesn’t come out of a negative experience with bitterness or sarcasm, but instead sees it as a learning experience.”

Tellier is open about her loneliness, and pretty much all aspects of the battle she is fighting with no-nonsense bravery. Her social media posts range in topic from fashion, faith, and queer life to her College work, her love of “Star Wars” (she has dressed as Princess Leia for the past three Halloweens), and her disease.

“I have become more open about it because I wanted to know other people,” she said. “I look fine to a lot of people if I’m not wearing my mask, and some people feel it’s taboo and awkward to ask me questions. For me, there’s nothing embarrassing about it.

“I have to choose my every day very carefully. Sure it would have been fun to have roommates, but I need my own bathroom because other people can make me sick. I have to recognize my limits and be OK with that.”

Tellier treasures her Friday game nights with the Harvard-Radcliffe Science Fiction Association — “anything vaguely nerdy” — and is president of the Harvard College Disability Alliance, a group that advocates for a more accessible campus.

She also stays connected to others fighting cystic fibrosis.

“Having a terminal illness that’s not cancer is a different culture,” she said. “For CFers, dying young is the norm. You feel like your life is happening faster than everyone else’s and you become used to losing friends at young ages.”

And she is constantly grieving a baseline of health ever in retreat.

“Something is always being taken away from me,” she said. “For example, I’ve suddenly developed painful esophageal spasms. I can be sad about it, but I have to accept it and move on. I’m already getting arthritis, and I’m learning to deal with it. Being sick is my full-time job, and the rest comes later.”

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