Jiang Mengyuan

MY brother Jiang Lai suffered from a rare disease called Duchenne muscular dystrophy, losing the ability to walk on his own by the age of 9. He gradually lost some control of his arms as well. When his illness forced him to drop out of middle school and left him wheelchair bound, the computer in his bedroom became the only way he communicated with the world.

Eventually, equipment designed for his recovery exercise sat unused in a corner of his closet, as the muscular dystrophy got so bad that even those exercises became an unbearable burden for him. Without fully understanding his situation, I became the only person who treated him as if he were just a normal boy who chose to study at home. What I saw was that a keyboard and a pen made my brother an author. Over the course of a year, while he was in his creative mode, I lay on his bed and watched the birth of his first book.

My parents did not tell me much about my brother’s disease, not until years after his death. They kept everything to themselves and tried whatever methods they knew to ease my brother’s pain. Most of the time, before he lost control of his limbs, he remained at home. With my parents guiding him, he exercised on the living room floor whenever he could find the strength and withstand the pain.

It was not the ravages of his disease that most impacted my developing sense of identity. Instead, it was the way he dealt with what life had handed him. My brother focused his energy on what he still had instead of what he already missed. Even when his condition was so bad that his fingers could no longer hold the mouse and move along the keyboard, he chose to continue the story orally and let my mother and me do the typing.

The last time I saw him was the night before I went to America. I was 11 and he was 18. Before I left his room, he gave me a red envelope with the money he had earned from the publication of his book.

My brother’s death was an obstacle for me, but by the time I lost him, he had already taught me how to handle the toughest challenges in life. He had taught me that those who are lucky sometimes are the ones who confront their misfortune and find the opportunity in the luck life grants them. His death was sudden for me, but he did prepare me to face this loss. I wasn’t to wallow in what I no longer had, but rather I was to recognize what I did have. I had my brother’s inspiration to propel me forward toward a life with meaning and grace.

The outcome of the lesson that my brother taught me came up years after his death. Two years ago, I started to search and interview families of young patients struggling with uncommon diseases: From Jiajia, I learned the power of a family’s understanding and compassion; from the case of Cai, I understood the power of belief reflected in the grandma when almost everyone told her that there was no hope for her granddaughter; Xuanxuan taught me the force behind a positive attitude, even when it comes from a child; Yaoyao made me see the importance of persevering, despite overwhelming challenges; the case of Ming and Tingting involved two lessons and Ming demonstrated the power to overcome the irreversible damage to one’s physical body while their mother Qin showed me the strength of a truth seeker.

The future I envision is one where the potential for profits from new drugs does not alone drive research dollars. The future I dream of will be one in which researchers are driven to find answers for even the rarest of diseases because with each successful answer, the possibilities for more relief to all patients do exist.