It’s Rare Disease Day, so I wanted to share an honest snapshot of what a progressive rare disease can feel like.
This progressive rare disease has broken my heart a hundred times in a hundred different ways, but it also has been healing.
If even a celebrity is left on their financial knees due to illness, then how do any of us stand a chance?
Actor Van Der Beek died of colorectal cancer on February 11, at age 48, leaving behind six children and a wife. James was diagnosed in 2023. He died 2.5 years later. Colon cancer is the leading cause of cancer deaths among those under 50 and the second leading cause of cancer overall.
Instead of James spending his last days focused on what mattered most— his family, friends, and final moments with the world and self— James’ last 30 months were filled with figuring out not only how to stay alive, how to pay for it, but as the breadwinner, thoughts of what would become of his beloved family after he’s passed.
The mythology that if you work hard enough, you’ll have access to life has been broken with James story. The dilemma of paying for a multi-million-dollar cancer treatment is a story for many Americans, except this one is a celebrity. A GoFundMe campaign created for the family of the late James Van Der Beek has raised more than $2 million. But this is not the story for everyone.
A new year, Instagram vs Reality. So far, the new year has brought the invitation to speak and share my story + debut picture book, Yumi and Monster, at Pixar in the spring AND at LA Children’s Hospital during Rare Disease Week. Normally, I don’t share before they happen, but the excitement of Pixar + Children’s Hospital is too much. This and Yumi and Monster winning an award are my big 2026 news, but the reality is I’ve not been well, and this year has already been a challenge.
This photo is from New Year’s Day 2 years ago. How I look and feel since December is more like the second photo.
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! 💕
Instagram VS Reality. My picture book, Yumi and Monster, which I’ve been writing and illustrating for almost seven years, is finally out tomorrow, September 2. The moment that inspired this story happened way back in 2012—13 years ago! So, this book has been a long time coming. It’s also my debut picture book, and I’m both the author and illustrator. The story is inspired by my rare and progressive form of muscular dystrophy.
This should be the most exciting time in my life, but I must admit that my emotions on my first Book Day Eve are complex. In true form, I thought I’d be honest and share how I’ve been feeling about my impending book day throughout the year.
The DEl war serves as a catchall manufactured distraction to disparage - a great distraction from the real cover story: the wealthiest man in the world, an unelected official, has unchecked access to our government, including pushing out top officials & illegally gaining access to Americans' payment system...
What does it mean to be a mother or motherly? Is it just a noun for biological reference, or is it also the act of caring for others, biologically yours or not?
Today is about acknowledging the living moms, but I typically mention those we don’t think of.
*Actually, Mother’s Day was formed in 1870 by mothers who called for anti-war activism and a more just, peaceful society, not the corporate holiday we celebrate today.
This photo is Jason and I visiting my orphanage last year. We are Korean American adoptees. I was abandoned at birth, and my Korean name, ‘Young-eun Kim,’ was given to me by nurses. They named me after the clinic I was born in. I only recently realized they did this so my biological mother could recognize my name if she was ever to search for me in the future…
Medical expenses are the leading cause of bankruptcy in America. We're also the only first-world country without universal healthcare, yet we have the most expensive healthcare system globally.
It shouldn't be controversial to believe that a person's class shouldn't dictate whether they live or die. The idea that class is a reliable indicator of worth is problematic.
🌟 Cover Reveal + Preorder!🌟
I am overjoyed to announce that my debut picture book, Yumi and Monster, is releasing September 2, 2025, and is now open for preorders!
🩷 Preorder on my website @ https://www.kamredlawsk.com/yumi-and-monster
“There was a complete emptiness in children’s culture in Germany after the war. When all the Nazi books and culture had been thrown away, there was a vacuum, and then Pippi came and filled it up.” - Astrid Lindgren
For the last couple of years, I’ve been consulting on the new PBS Kids series SKILLSVILLE, an animation that encourages kids to “power up” the skills they need for success in future careers and everyday life!
McMahon's directive is to oversee the department until she is no longer employed, making it clear that eliminating the ED as part of its "anti-DEI" agenda is the ultimate goal, which could mean that poor and disabled kids won't have a seat at education and opportunities.
For disabled people there’s an extra enigmatic layer around dating, relationships and intimacy. ‘How is this going to work?’ is not a question relegated only to prying eyes from strangers, yet also an internalized ember burning deep within. When you have an accident or are born with a disability and reach the age of sexual intrigue, no one tells you how sex works in this (new) disabled body. In fact, many doctors say your life, including your sex life, is over as they told me.
Nearly 1 in 4 adults across the world are lonely. The loneliness epidemic in America, with 58% feeling like no one knows them well, is highest amongst the young than those over 65.
With technological advancement and more access to instant social “connection” we’re (allegedly) more connected than ever, so why are we so lonely.
In this book I give you my heart — all the struggles, feelings of loneliness, isolation, uncertainty and unworthiness. I know I keep saying so, but I truly can't wait for you to see what I saw so many years ago when I fell. So much of me is evident in this story and how I chose to present such a moment. I wanted to be careful and nuanced in how I portrayed this part of disability. I sincerely hope you’ll love it.
In ‘Verdant Embrace’ Melissa aims to celebrate the intersection of art, nature, and the human experience while exhibiting how beauty and strength can thrive in unexpected forms. Melissa’s narrative aligns with mine as someone who has been living with an extremely rare, progressive, and genetic muscle-wasting condition, GNE Myopathy. A mutation. Just as all of nature is. Just as your blue eyes are. Mutations can create devastating disorders or beneficial adaptations and aren’t as random as once thought. Mutations are essential to evolution. Every genetic feature of every living organism was the result of a mutation first. What is natural is beautiful for it leads to life, just like bodies and minds are that are alternate to the statistical median…
My Wheel Girl is at Los Angeles’ Hammer Museum.
“Breath(e): Toward Climate and Social Justice” is an exhibition that’s part of Getty's initiative PST ART: “Art & Science Collide". Featuring works by hundreds of contemporary artists, scientists, and activists with topics ranging from climate change and environmental justice to the future of AI and alternative medicine, you can find PST art in museums & institutions across the region.
While looking at the Detroit skyline from my tiny studio apartment, I made the impetuous decision to visit Korea. This would be my first time back in 20 years, since my adoption at age 4 by a white family in Michigan. It was the summer of 2003, and I booked my ticket two weeks before departure. This was also the period when the mysterious weakening of my legs had begun (the first signs of my genetic neuromuscular disorder that made me a full-time wheelchair user), and this hastened my sense of urgency, despite feeling nervous about traveling alone.
Lost in Thought. Lost in Me. Lost in You. Lost in Japan.
As you know, I’ve been wheelchair traveling around Japan. It’s been 3 weeks today, and we have 12 more days here before we head to Taiwan and Korea. So far we’ve completed Tokyo, Matsumoto, Takayama and Japan Alps and Nagoya. We’re working on crossing off our last 2 cities before we leave Japan.
May 27, 2024 @ 3:45AM / Takayama, Japan
I’m awake and in insurmountable pain. Fatigue has cloaked me from sky to floor. My chronic stomach is no friend of mine. I could never explain the pain I’ve been in behind the smiles. The smile is genuine as I’m able to ignore pain when I’m truly inspired to live while traveling or creating, but eventually my body catches up and reminds me who is boss. My will is constantly pushing against my body, and I’m just an innocent bystander watching it happen.
Collectively, we hold a diverse array of stories, hell-bent resilience, softness, power, stories to tell from our bellies, talents, style, humor and dreams—and though we all hold disability in common, our individual stories tree-branch into a variety of perspectives; further contextualizing the simple narrative the disabled community has unfairly been dealt.
Oliver, a passionate humanist, deeply cared for his patients and people. Read his books. His work helped humanize the stories behind patient cases; an example of what a good doctor should be. He put humanity into medical care; humanizing his patients by not focusing on what they were “missing” and instead, armed with exceptional curiosity, looked for the richness in differing experiences; a perspective he could never have but took the time to ask.
When you find out you’re going to be disabled, one of the first things you may think of is sex and dating. “How is this going to work?” is not a question relegated only to curious prying eyes from strangers yet also an internalized one that can burn deep within.
The phrase, ‘Disability Is Not A Bad Word’ comes from the need to tell society that, yes, we may be disabled, but this does not mean our lives are smaller than yours. We are not smaller than you. It means we are not monoliths or riddled with only sadness-void of agency or worth-as you may immediately suspect. It means we are full multi dimensional beings with abilities, desires, contributions, passions and dreams with the capability to influence love and eroticism. It means we have all the same range of emotions and quality of living as non disabled people.
I've become afraid of my body. I appreciate her and all she has carried us through, but I'm still afraid. I'm afraid of new treacherous body tales, new pain and an uncertain future. I'm afraid of its fragility. I'm afraid of the inevitable.
When you’re disabled vulnerability inevitably surrounds your every move (or lack thereof). You're vulnerable in ways most people don’t have to think of, and if you require a lot of assistance like me, vulnerability comes without a choice or modesty-from required help with all bathroom exchanges to getting dressed to needing help in every single daily act.
This is me.
When I’m finally tired of having no independence.
When I’m finally tired of dripping fatigue.
When I’m finally tired of unrelenting pain.
When I’m finally tired of losing everything I love.
When I’m finally tired of being tired.
It is easier to get a gun in America than a wheelchair. This is not an anti-gun post, this is an anti-do nothing post in the face of an undeniable problem.
The opportunity to share my personal story through my debut picture book, as the author-illustrator of Yumi and Monster, at Pixar was an incredible core memory experience. The best birthday gift I could have received.