This month, I’ve been and will be doing a couple of talks at universities in celebration of Asian-American and Pacific Islander Heritage Month. I’m constantly reminded of how I’ve been given this platform to advocate and raise awareness for those often socially marginalized—particularly women, Asian-Americans, the vision impaired, and the disabled. Winning “MasterChef” was cool, but I’m well aware of the bigger picture. Like Spiderman, “With great power comes great responsibility.”
Even the books I’m reading—A Spool of Blue Thread by Anne Tyler and The Light of the World by Elizabeth Alexander—touch upon the “other”: the elderly and adopted, in the case of the former, and the grieving and diasporist, as in the latter. Literature exists to help us understand others who are not like us; like food and the arts, it serves a connective purpose, exposing the universality of humankind, however frayed.
I think about this phenomenon often—the coexistence of both the celebrated differences yet commonality we all have as humans—and it makes certain things that much more important.
Because I was an only child and lost my mother when I was fourteen, I learned to be independent from an early age. When I was diagnosed with Neuromyelitis Optica/NMO when I was in my mid-twenties and lost my vision, it was very difficult for me to accept the fact that I could no longer drive my own car and shop for my own groceries. My independence was the casualty of my NMO, and it took a long time—probably five years or so—for the final acceptance of my diagnosis.
When I was first diagnosed with NMO twelve years ago, it was still called Devic’s disease, and the only resources I could find online were one-pagers from the University of California, San Francisco, and a practice in the United Kingdom. That’s it. There was no Guthy Jackson Foundation, no NMO support groups, no NMO Diaries blog.
It became not just a desire, but a necessity, to raise awareness about NMO. I was tired of everything assuming I had multiple sclerosis or, better yet, scoliosis. It bothered me that nobody knew what NMO was, including medical staff I came across at various hospitals and clinics. I’m okay with NMO being considered a rare disease, but I did not like that it was an orphan disease.
My blog, The Blind Cook, was started in part because I wanted to raise awareness about NMO. In fact, my very first post for the blog on July 23, 2010, was entitled “Living with NMO” and discussed my new treatment plan. I’ve spoken about NMO at all my keynotes, and I’ve helped out with various GJCF fundraisers and events.
I believe we all have at least one thing we’re passionate about, and our purpose in life is to be an advocate for such things. I care about the literary arts, the culinary arts, the blind community, the disadvantaged, physical and mental health, my family and friends. These are the things for which I fight and bleed.
Maybe you haven’t found what you’re passionate about or what you’re meant to do in life, but I urge you to keep looking. The happiest people are those who feel they have a purpose on this earth. Once you accept, you become aware, and then you’re ready to advocate.