When Christine Ha was growing up, she ate a lot of Vietnamese food prepared by her mother. However, as a youngster, she had little interest in learning how to prepare her mother’s dishes. When Ha’s mother died of cancer when she was 14 years old, it seemed that she would never be able to eat her mother’s cooking again.
When I went off to college, I thought to myself, ‘I really miss mom’s comfort food and home cooking, so I’m going to teach myself [by] trying to reconstruct her dishes by memory,'” Ha explained to Dailion. “But when I went off to college, I thought to myself, ‘I really miss mom’s comfort food and home cooking,'” Ha said.
She started to reproduce dishes that reminded her of home via trial and error, and in the process, she discovered a passion for the culinary arts.
Cooking as a hobby has proven to be extremely rewarding for Ha. “There is something very satisfying about being able to cook something and share my dishes with others while also feeding them and making them happy,” she said.
While in the throes of college study and polishing her culinary abilities, Ha began to notice hazy vision in one eye. It was during her junior year of college that she first noticed the problem.
After seeing an optometrist, she discovered that she had optic neuritis, which is an inflammation of the optic nerve, and that she needed surgery. In order to determine the source of the problem, she visited various physicians and performed several tests, which resulted in a misdiagnosis of multiple sclerosis (MS), which may cause optic nerve irritation.
When Ha was finally diagnosed with neuromyelitis optica spectrum disease (NMOSD), he was relieved to learn that he was suffering from a rare and persistent brain and spinal cord condition that causes inflammation of the optic nerve and spinal cord.
In light of the fact that the symptoms of NMOSD are quite similar to those of multiple sclerosis (MS), Dr. Kristina Patterson, medical director of neuroimmunology at Horizon Therapeutics, says it may be difficult to differentiate between the two disorders.
“People with NMOSD are often misdiagnosed with multiple sclerosis (MS), but it is distinct from MS in that relapses are more severe and may result in irreparable damage and impairment,” Patterson said to Dailion.
Because relapses of NMOSD may result in lifelong impairment, she believes that getting a definite diagnosis as soon as possible is critical so that treatment can begin.
“There are FDA-approved therapy choices for persons living with NMOSD, so we urge that people speak with their healthcare professionals to determine the best course of treatment and management for them,” Patterson said.
While Ha was informed that certain therapies may or may not be effective in reversing her vision loss, she eventually lost her ability to see completely a few years after being diagnosed.
“It took many years and many obstacles for me to learn to cope with the uncertainty,” Ha said.
She also suffered from spinal cord inflammation, which impairs her motor and sensory abilities in addition to visual loss. Besides discomfort in the limbs or back, other typical symptoms of NMOSD include paralysis, limb weakness, motor impairment, and breathing difficulties, among others.
A will to learn, thrive, and master cooking
In order to cope with her diagnosis, Ha turned to her family and friends for support, despite the fact that it was difficult for them to comprehend what she was experiencing.
Everybody tried their best to assist, but it was still incredibly lonely for her. “Everyone had their own way of trying to help,” she added.
After many years of mourning the loss of her eyesight, understanding her sickness provided her with a sense of closure.
In her words, “equipping myself with information greatly helped… educating myself so that I understood the best what was happening to me and being an informed patient and advocate for my own healthcare.”
She found that turning to her culinary abilities helped her to regain a feeling of normality. After progressively losing her eyesight, Ha had to learn to navigate her way about the kitchen with less and less vision as time went on.
“With each successive loss of eyesight, it seemed like I was beginning again, having to learn how to wield a knife all over again or how to manage the hot cooktop over and over,” she said.
Cooking, on the other hand, enabled her to maintain some of her freedom.
As Ha explained, “[not] being able to drive, not being able to read my mail on my own, and other things like that made me feel like I had reverted back to a life of normalcy.” “It felt like if I could at least do one thing, which was cook something simple in the kitchen and feed myself or someone I care about again, that made me feel like I had reverted back to a life of normalcy.”
She was particularly talented in the kitchen when it came to savory dishes. According to her, “you can taste the meat and know that it needs seasoning or anything acidic.”
The visual display, on the other hand, remained a difficulty. As Ha said, “People eat with their eyes first, so when a meal is brought to the table, of course, you would exclaim ‘ooh’ and ‘ahh’ if the presentation is appealing.”
The absence of visual distractions helps her to concentrate on the taste of food — its flavor, whether it is balanced, its textures, and its warmth — rather than on how it looks.
As Ha said, “in some ways, I’ve learned to refine my other senses in the kitchen, and I have a more nuanced experience when I taste something than many individuals who are blind.”
For example, her sense of smell helps her evaluate if the garlic in the pan is raw, properly cooked, or on the verge of being burnt by the heat. Her experience has taught her that she frequently recognizes when something is about to catch fire before anybody else.
Also in the kitchen, her sense of touch is heightened, allowing her to more accurately identify things like whether or not she sliced vegetables in the same size.
As she gained confidence in the kitchen and learned to use her senses, Ha advanced to the next level when she was selected to compete on the third season of “MasterChef” in 2012. During the finals, she prepared her mother’s pork belly dish, which earned her first place.
When I was younger, I used to make that meal for my mother, and I wanted to pay tribute to her in the finale, so I made it for her. To this day, when I’m wanting comfort food, I make the same dish at home,” Ha added.
The dish is also available at one of Ha’s two Houston-area restaurants, which he also owns. Her accomplishments after winning “MasterChef” include writing a cookbook and hosting a culinary program for the visually challenged.
“When you’re going through a difficult period in your life, it’s easy to lose hope, but I believe my narrative is one of hope and of being able to overcome,” Ha said.
Spreading hope to the NMOSD community
As part of this collaboration, Ha has partnered with the NMOSD Won’t Stop Me initiative, which seeks to connect people living with NMOSD together via storytelling. She is paving the road by sharing her experience in order to let those who are suffering from the ailment feel less alone.
She also intends to serve as an inspiration to those who want to advocate for their own health.
When Ha was going through his ordeal, he wished there was something like this available. “I wish there was something like this when I was going through my ordeal a long time ago, but… I couldn’t find any resources, I didn’t know anyone else who had this disease, and it felt very isolating and lonely,” he said.
Other people living with NMOSD will benefit from the campaign, she thinks, by making them feel like they are a part of a community where they can discover resources and learn about their condition, as well as share their stories and discuss their successes and setbacks.
The fact that she was able to create a peanut butter and jelly sandwich after having recently cooked a complete Thanksgiving feast the year before, even though it looked little, she considers being an accomplishment. “[I] believe it is vital to hear other people’s tales of perseverance and overcoming obstacles.”
Members of the community will be entered to win a copy of Ha’s cookbook, and those who share their tales will be entered to win a spot at Ha’s virtual cooking demonstration.
“If you look at my table, you’ll see that I’ve endured. I’ve made the decision to be independent and to live my best life despite the circumstances that have been thrown at me, and this is true for everyone who is faced with the adversity of any kind. Whatever the obstacle — another condition, job issues, family obligations, etc. — “it is a process,” she said. “It doesn’t matter whether it’s vision loss or health-related. It could be anything.”
According to Ha, she learned the value of resilience as she went through the process of losing her eyesight and managing her illness.
In the beginning, I wasn’t sure whether I would be able to come out of this as a person who could be happy again one day, but I did, and I’ve been able to do things in life that I never thought was possible, so now I believe that if I can do it, so can anybody, according to Ha.