6/27/2026
Last week I came across the story of Liu Kaixin—a writer, artist, and advocate for people living with rare diseases. Ever since reading about her, I wanted to write something but kept putting it off.
This morning, during my usual run, I found myself thinking about her again. Without realizing it, I picked up the pace and ran much faster than usual, yet I didn't feel tired. Perhaps I was inspired by her story.
So I decided to write about her—not only to share her remarkable journey, but also the thoughts it has inspired in me.
What impresses me most was not merely the unimaginable suffering she has endured, but the extraordinary life she has built despite it.
Those of us blessed with good health often take for granted ordinary activities like breathing comfortably, sleeping through the night, or simply enjoying a good meal.
For Liu Kaixin, none of these are ordinary.
For more than a decade, she has been unable to eat normally. She survives through a feeding tube through her nose, with liquid nutrition slowly entering her body for twenty hours each day. She sleeps only about four hours a night. Her heart depends on a pacemaker. When she lies down to sleep, she requires a ventilator to help her breathe. Years of her illness has reduced her weight to as low as 29 kilograms.
A person in such circumstances could easily allow illness to define her. She refused.
Instead, here is what she's accomplished. She graduated from the Central Academy of Fine Arts in Beijing and later spent three years studying in the United States, earning a master's degree in Visual Arts Administration at New York University. It was during her time in America that genetic testing finally confirmed her diagnosis of Ehlers-Danlos syndrome (EDS). Throughout those years, she faced repeated hospitalizations and life-threatening medical crises entirely on her own.
After graduation, she joined a publicly listed AI company as the CEO's assistant, maintaining a demanding full-time job for more than seven years while undergoing continuous medical treatment and frequent hospital stays.
She later held her own art exhibition, To Be Continued, published two books—May You Live Freely and Boldly and May We Grow with Serenity—and has continued to paint, write, and speak publicly on behalf of people living with rare diseases.
Many of her paintings and much of her writing were completed in hospital rooms and intensive care units.
As I read her story, I couldn't help asking myself: Have we been wasting the ordinary life that she longs so desperately to have?
Good health is a blessing. But so many of us take this blessing for granted and failed to live a fulfilled life like her.
We Cannot Choose Our Circumstances, But We Can Choose Our Response
This is what moved me most about Liu Kaixin's story: her response to her circumstances. She wasn't able to choose the body she was born with, the rare disease she inherited. But she could choose how to respond. Instead of surrendering to despair and pessimism, she chose to live like a normal person: study, create, read, write, work, and contribute as fully as she could.
She once said: "The strength people see in me already exists within themselves. I am only a mirror."
"My greatest wish is not to become an inspirational figure. It's simply to be an ordinary person who doesn't have to live with severe pain every day."
She refuses to portray herself as a hero who conquered illness. She refuses to romanticize suffering.
Most of Us Have Been Dealt Better Cards
Life deals each of us a different hand. What ultimately determines the course of our lives is not the hand we are dealt, but how we choose to play it.
Many people enjoy good health yet slowly let the time slip away. We keep telling ourselves there will always be tomorrow. Another year passes. Then another.
Liu Kaixin has never had the luxury of assuming there will always be a tomorrow. She experiences everyday the fragility of life. That is precisely why she uses each day so preciously.
What She Taught Me
She reminded me that I still have lungs that breathe freely, legs that can run, and a body far healthier than hers. If she can create such a meaningful life despite her limitations, I have even less excuse to waste the gifts I have been given.
Life deals us the cards. Our choices determine how we play the hand.
