Los Angeles celebrates Yumi and Monster!!! I finally celebrated 7 years of writing and illustrating my debut picture book on a beautiful afternoon at Annabelle’s Book Club with a packed bookstore of friends and followers listening to me read Yumi and Monster, followed by a conversation and book signing. My book sold out at the event, and all it’s because of you! 💕
For this celebratory book post, I want to share what this rare disease, disability, and book journey has meant to me and the major themes & takeaways that I tenderly threaded throughout Yumi and Monster.
“This progressive rare disease has broken my heart a hundred times in a hundred different ways, but it also has been healing…” — journal excerpt, April 2025
For 30 years, I’ve been living with an ultra-rare form of muscular dystrophy (GNE Myopathy) that progresses to complete immobility, and in rare cases, death. There is no cure. My condition is not stagnant; it keeps playing like a film reel on a never-ending loop—a story of loss, grief, and love, a bittersweet whispering background tune to the soundtrack of my life. This shadow of constant loss moves with me as I move with life.
“Resilience, creativity, and adaptation have been key in transitioning from a physically-capable existence to a predominantly cerebral one.” — Kam Redlawsk
Yumi and Monster is like my living thesis, highlighting a deeply personal journey of acceptance, disability, resilience, being different, the uninvited, and change, not unlike an adventure so many of us, disabled or not, are forced to embark on in our lives. Monster is the kawaii personification of my muscular dystrophy that follows me around.
In the era of disability advocacy where accessibility, sociopolitical justice, and empowerment dominate the scene, all important topics I too advocate on, Yumi and Monster was meant to highlight a less discussed vignette that is equally important, not to mention universal: grief, loss, and acceptance. What do we do when faced with the uninvited?
Often I feel the topic of emotions is undervalued by society and even sometimes criticized by disabled advocates when one is honest about the associated grief with a disabled life because, I think, out of fear of inviting pity, a perception and reaction that the disabled community has been fighting against so we can be seen as humans, not pathetic throwaways. For myself, though, I think teaching society to have nuance is crucial, especially in these times when the art of nuance has scarily been lost to serve division.
It is unfair not to be able to express the stages of grief for the perceived protection of an overall newer narrative: that disabled people are only happy and empowered about their disabled life, when all sides simultaneously can and do exist. No matter how confident one is, everybody has had to go through the stages of grief and acceptance of loss and a new life, and so this story is for them because facing ourselves and our emotions is crucial to move forward.
My diagnosis searching days, and post-diagnosis was a very lonely time. I was a teenager, going through uncertainty alone. Nobody believed me or listened, so when I was old enough to be my own advocate and discovered what was happening to my body, I was lost in a drowning pool of what to do. Receiving a final diagnosis after 5 incorrect diagnoses was a relief, but it also left a voluminous hole in figuring out what this new life would look like, which had already been greatly misinformed by negative societal messaging, including a medical paradigm that told me my life was over and to quit trying because of my prognosis.
A slice of my story is represented in Yumi and Monster. Through this grievous journey, I’ve had to dig deep, and after decades of living with this condition, I’m still exploring and learning.
Below are important Yumi and Monster themes and takeaways.
💕SCARY EMOTIONS:
Our emotions, and how we interact with them, are an essential ingredient of not only being human but how we proceed in life. Unfortunately, much of culture throughout history has devalued the importance of emotions, reducing it to a “woman” thing when it is the origin of all human behavior. Men have unfairly been tasked by society the most, not being allowed to be “emotional” for the sake of the myth of what masculinity means.
Yumi and the Monster is about disability, but it is also about the importance of having an open dialogue with the uninvited shadows of our lives. It is about emotional sensitivity and the emotional stages of our struggles and changes that happen throughout life.
A cornerstone of my advocacy for 20 years has been vulnerability and sharing about the associated emotions of a progressive disability. I chose this path of advocacy because it was intimate, honest, and less discussed. No matter who we are, no matter what race, gender, cultural, or religious beliefs, no matter what land we are from, where we are united is that we all feel the basic emotions of love, anger, disparity, loss, and grief. Whether in this land or another, we are all virtually the same: we love and worry for our family and children’s future and safety, and we’re just all trying to make it through this life.
There will always be divisive talk, highlighting the ways in which we are different, which is why I chose to advocate on how we are similar to bridge humanity and understanding… and in this conversation of basic and essential emotions that we all experience, it was my hope that people would come to understand more about disability through a human lens because so often I think, non-maliciously, this assertion that disabled people have nothing to offer is aided by a lack of exposure. I can tell you to give me accessibility or bark the rules of engagement, but a change is never more genuinely accepted until people really understand why, and so I’ve spent my advocacy vulnerably opening myself as a human to explain what life is truly like as a disabled person.
When I observe humans, there is an obvious, intense expulsion of our emotions at everyone around us, stuffing and twisting our feelings in the name of avoiding our past and emotions, to the point of being convinced that we rid our pesky struggles into obscurity when all we did was give them more power.
The primary message of Yumi and Monster is for us to contemplate and face our emotions rather than avoid them. Much like Yumi avoiding Monster by talking him to the woods where she plans to lose him, we too are taught to shove our feelings down, incorrectly thinking we have outsmarted our struggles and tragedies through avoidance, but one can never truly avoid themselves because so much of what we are and what has happened to us is present in how we interact with the world.
From the leaders of our household to the leaders of a country, our emotions and how we react and interact with them are vital to who and what we become. At the end of the day, so many of us are products of our past and childhood, and then we spend much of our life trying to process, make sense, undo, avoid, outmaneuver, repeat, or compensate through false bravado. But self-avoidance only leads to negative and detrimental leakage at the expense of everybody else, including oneself.
The byproduct of avoidance is the conditioning of destructive behavior and the development of unsavory and toxic character traits like the bullied becoming the bully, overly compensated-for insecurity, thin skin, abusive, addiction, a chip on the shoulder who views everyone as prey and competition, anger, rage, obsession with power, arrogance, and incessant need for attention. For some, instead of expelling all their trauma onto everybody around them, they instead go inward with anxiety, self-destruction, self-loathing, insecurity, addiction, and depression. So at the helm, Yumi and Monster is about the importance of non-avoidance and the necessary emotional stages and acceptance one must travel in order to become healthy people.
It’s okay to say it hurts. Great minds like Einstein and Darwin regarded true intelligence as not intellectual knowledge but our ability to adapt and have emotional intelligence, and I would agree.
💕JOURNEY to ACCEPTANCE:
Years ago, when I was advocating for treatment development for my rare condition, I realized that most people will never see treatment in their lifetime for the thousands of diseases and conditions that exist, so it was important to me to discuss how one proceeds in life if one never sees treatment, which has to include the process of mourning and grieving when one is entering a life of disability and illness.
The journey to acceptance requires an emotional relationship with oneself, and this is what Yumi and Monster is ultimately about. The Monster represents the disease that follows me around and the shadow of not wanting to be who we are. Yumi’s acceptance of Monster leads to a peaceful coexistence because she learns to stop viewing the uninvited, the monster, as an adversary or an enemy, and rather something to form a relationship with.
One of my favorite quotes is by Carl Sagan: “The beauty of a living thing is not the atoms that go into it, but the way those atoms are put together.”
Yumi is not only about the acceptance of disability but being different and the importance of this as we learn to observe and embrace the differences between us, which is so essential to the human condition, especially today when being different and diverse is targeted and fear-mongered as anything other than what it is.
Yumi and Monster’s last line, “I am only me because of you.” epitomizes the overall message of my picture book. It was important that the message not be the typical overly toxic positivity about disability and differences like, “You’re awesome! You’re a superhero! You’re the best!” My story makes no claim of these things; it simply states that everything that we are is because of all that has happened to us in our lives, and that this is a beautiful thing worth acknowledging, that each of us is entirely a unique copy. I didn’t want to tie the ending in a pretty bow, citing that Yumi has grown to “love” her shadow and that everything is awesome and solved. I didn’t want to repeat the narrative that you have to love your disability; telling disabled people how they should feel or grieve and rather conveying a message about learning to live with it on your terms.
💕EVOLVING STRUGGLES INTO A RELATIONSHIP:
In 2012, I was still walking, using a cane and leg braces to tame my wobbly gait. We had just moved to San Francisco from LA. One day, I fell. Unable to get up, I had to wait on the floor for an hour while I waited for Jason to drive home from work to help me up. Suddenly, as I waited, I saw him. A furry gray foot appeared in the doorway, and I immediately thought, “Ahhh. He’s the reason for all my falls.” After my fall, I drew the original illustration that inspired Yumi and Monster. I immediately saw this scene as a relationship with the muscle-wasting condition that follows me around. At the moment, I saw it as an animation in my mind, with Yumi and Monster having a similar relationship to Calvin and Hobbes, but with more sentimentality and life’s darkness.
Monster’s name is not meant to call my disease or our struggles a “monster“. Monster is just his name and a vehicle for personifying my rare disease; it was never about calling disability bad or good. In fact, it’s the opposite; I’m saying don’t view your struggles or change as the enemy, see them as a relationship and something you must work with in order to live a healthy life.
💕 CURIOSITY and EXPLORATION:
A saying I dislike is “curiosity killed the cat,” implying a negative association with being curious when it is a central part of being human. We are wonderers, wanderers, explorers; it is written in our history.
Monster is mostly nonverbal, and this is by design, as well as the only sentence Monster repeats, “Come explore with me.” In the beginning of this book, the publisher suggested adding more dialogue to Monster, but it was really important to me that he have few words, so that the focus is always on Yumi and her journey as Monster is only a personification of the disease that follows her. Monster encouraging Yumi to explore (her situation) represents how I’ve lived my life, especially after becoming disabled.
Despite doctors telling me that my life would be over because of my disability, I’ve lived my life more than most, including traveling the world in my wheelchair, skydiving, parasailing, diving in the Great Barrier Reef, and hopping around different careers and skill sets alongside a debilitating body. I credit my life to exploration, curiosity, and an open mind.
We view life as linear. We are told life should look a specific way, so when things don’t line up, we perceive ourselves as failures as if there’s only one way to live life. This same thinking applies when society sees a disabled person, where all they can see is one unmovable narrative: disabled people are pitifully sad and useless. This linear thinking has destroyed a lot of lives and stunted potential.
Society has told us there is something wrong with us if we are different, and then we do further damage by holding ourselves to this lie. It is true, I can’t walk. But, as I often say, I don’t find walking a particular talent. I have all these other skills like being a designer, artist, writer, and yet my story is still restricted to “damaged goods” just because I cannot walk or lift my arms. If I had believed society’s silly rules, I would’ve never lived my life, residing in a shut-in life, holding nothing but shame for who I am forever more. This is where exploring comes in.
Change and impermanence are hard to accept, but there is always more if you explore. Nothing is ever as it seems, and for every end, there is a beginning. Always explore your situation and know there is more; all it requires is creativity, adapting, and focusing on what you can do, not what you can’t.
💕REPRESENTATION and DISABILITY VISIBILITY:
I’m a big believer of what we don’t see, we don’t know. As an Asian American adoptee, I grew up in the Midwest bubble of an all-white community, and this greatly misinformed me about the world, people, life, and differences. I grew up being bullied for how different I was, told to go back to my country, and that I didn’t belong. I didn’t see anyone like me, so being different became the vein of my existence curating a self-loathing child. What we don’t see we don’t know, and I most certainly rarely saw others like me, including in the media. I felt forced to assimilate for survival to the point that as a kid I forgot I was Asian and saw myself as white, creating a startling realization one night when I was 12, looking closely at my face as I washed it, to the sinking moment that I really did look different. And then disability began as a teen, but I didn’t understand what was happening with a name until my early 20s, further pushing me into the different and outsider realm.
Everyone wants to belong; this is an essential human need. We are designed to be interpersonal. “DEI” is not about giving everybody a team participation award; it’s about giving visibility to all the ways one can be human to build a more aware, tolerant, and understanding society. Unfortunately, curiosity, understanding (of history and people), and compassion have been given a “DEI” label, making it an easy target for fear-mongering and vilification against what is different, including different ideas, all scarily to a listening audience. But “DEI” is really nothing more than having a curiosity to want to know people and stories that are completely different from you, and that this compassionate curiosity is not as scary as we are being told.
Disability is the largest minority group worldwide, and yet we are still kept at arm’s length by society when we are the only identity group that any human can become a member of at any moment in their life. Always remember, I am advocating for your future self. Disability is not as far from you as you think and is the center of what it means to be human, as our bodies are designed to be impermanent. But there’s been this fear of disabled people that includes dehumanizing and omitting us, and a big contributor of this behavior is the misinformed messaging of what it means to be a disabled person, which has been aided by the severe lack of visibility of disabled people in culture and media. WHEN we (disabled) are seen, we are only represented as pitiful, sad, ghoulish…monstrous… another subtle reason for choosing a monster as the character, representing how society views us.
Representation seems so inconsequential, but a story like Yumi and Monster, giving visibility to a cute and cool disabled character that uses a pink cane, subtly enters the subconscious of society and the disabled person, slowly changing our unnecessary fears and hurtful misconceptions. This miseducation is easily solved by having visibility. Representation can change minds and hearts: for a society who views disabled people as less than, the same society who told me that I should give up on my life after being given a diagnosis of muscular dystrophy, and for the disabled person who can only carry their image in shame because everybody else does. Nobody deserves to live in shame for who they are or the things that have happened in their life. This is why all my creative efforts go into disability visibility.
As an adult, I wonder if I wouldn’t have hated who I was as much if I had seen myself in the world. The years of feeling lonely through my childhood as an adoptee created a very dark little mind disguised by a happy cute face, as the rare Asian in a small-minded community who told me I didn’t belong, and then years of struggling to figure out the life of a disabled person as I avoided succumbing to the low societal expectations of disabled people.
It’s OK to be different; in fact, I encourage it. The visibility of all our differences does nothing more than educate, build confidence, understanding, and bridges.
💕Completing Yumi and Monster has truly been a dream I never knew I had. Building this picture book has made it evident to myself that I am both a visual and word storyteller, and that this is just the beginning of my storytelling adventures. Yes, I wrote and illustrated a children’s book, but I consider myself a storyteller and advocate first, so of course I will write more children’s books (Yumi and Monster is the first and last book I will illustrate… unless I finger-illustrate a book…), but I also want to develop my storytelling voice for adults.
Now that Yumi and Monster is finished, I have many creative plans. I plan to pitch Yumi as a feature animation. In addition, I’ve been encouraged to write a memoir. I’ve been consulting on some films and have many film ideas of my own…perhaps I will write them as novels first. I’m a documentary nerd and I’ve always wanted to film a documentary. Jason and I want to develop designer disabled vinyl figures. I want to use the rest of the physicality and time I have with my fingers to continue with my personal illustrations as I’ve been practicing drawing with my finger on my phone because I can no longer grasp a pen. I have ideas for installation art that centers around disability, being different, emotional vulnerability, the human condition, societal repeats…so yeah, I feel like I’m just beginning in my creativity.
I now understand what my mind has been telling me since I was a kid, that I’ve always had a storyteller’s mind, and that I visualize and experience thoughts and ideas cinematically. Storytelling is incredibly powerful. It can change minds and hearts, and it can build understanding. I love the crafting of visual elements, treating each scene like a compositional piece of art that supports the mood and emotional state. So I look forward to what’s next.
Celebrating the culmination of 7 years with all of you was truly wonderful. Thank you to Annabelle’s, who opened their beautiful bookstore to Yumi and Monster, and my agent, Lilly, who drove up from San Diego to celebrate with me and did a wonderful job as the last-minute MC. Lilly has been an incredible partner, friend, and publishing mentor, and I can’t thank her enough for believing in me, my story, and Yumi and Monster. And last but not least, I’m most grateful to Jason for being the MVP behind every single thing I do. I couldn’t do it without him.
Reading my book at Annabelle’s was actually my first time reading Yumi and Monster in America and the first time to children. My first book reading was actually in Japan to fellow GNEM patients like myself, and for my book release, I was in New York, but I didn’t do any readings and spoke to crowds of adults, so reading my book in front of children versus an adult audience in NY were both wonderfully unique experiences. With adults, I’m able to discuss more in depth on Yumi and Monster subtext and universal themes, and with kids, the satisfaction of seeing their intent focus as they follow along in their book while I read the words to my story is magical.
The most gratifying reaction I have received for Yumi and Monster is that this book is for everybody. Introducing my book to kids at Annabelle’s, and watching random kid customers excitedly gravitate to the Yumi and Monster cut-out, or adults who would read my book in the store and buy it right away, sometimes several copies, told me that people got it, which was such a concern for me as I tried to balance a story for both children and adults.
Thank you to everybody who came out to support Yumi and Monster!! I apologize for the delay in my public gratitude. Ever since celebrating with you, I’ve had highly unusual migraines where the light from my screen has been enough to make me scream, but please know I am grateful for your presence. There will be more book events, readings, and signings in the coming months. I may or may not be putting together a little California holiday book tour, so stay tuned. 🩷#YumiAndMonster
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