Resilience, creativity, and adaptation have been key in transitioning from a physically capable existence to a predominantly cerebral one.
September is Muscular Dystrophy Awareness Month. During a recent annual checkup with my neurologist at the UCI ALS and Neuromuscular clinic in California, I gave them my signed picture book, Yumi and Monster, that I wrote and illustrated, inspired by my progressive disability. I’ve been living with a progressive and ultra-rare muscular dystrophy (GNE Myopathy) for almost 30 years. There is no treatment, including no real viable treatment research currently for my condition. And so I continue to progress into the abyss.
So much has happened, so much has changed, so much has been seen and experienced. Through every progressive milestone, I ask myself, “Can I handle more?” Sometimes I’m not sure. To stay proverbially alive, thankfully, I’ve found ways to adapt—found new interests to replace lost loves in this process of life, this degenerative disease, like drawing, cooking, and driving.
I’ve been going to the UCI ALS clinic for years. They can’t do much for me, but I go to document my progression. The staff has always been supportive of my art, like when they attended my second art show ever in 2018, helping me sell out by purchasing a piece that continues to hang in their ALS office today (slide 4). My former UCI neurologist moved a couple of years ago to start an office in a new state. When opening, she asked if she could buy a print, ‘Zebra Tales,’ which is not on ‘ParkerGillingham’; a female collective who handles selling my prints. So I made a special Giclee print and now it’s up in her office. I’m told many patients inquire about it (slide 5).
Zebra Tales is special because I drew it for Dana Anahalt; a New York woman I met on Instagram. We were friends for years, but never met. We planned to. If you followed me long enough, you know what a long, complicated, horrendous, and obscenely rare list of health conditions Dana had that would make you breathless, leaving her blind, bed bound, unable to eat or speak as she mysteriously degraded for over a decade.
When Dana was able to speak and type, which was very little due to many conditions such as CPRS, I learned of grueling medical stories like when her insurance tried to take away her breathing machine, a device that was literally keeping her alive. She had to fight insurance in the dying state she was in. Dana is just one example of millions of people going through illness and disability who have to deal with a morally corrupt system.
Dana ultimately died in 2022. We never met. I didn’t share her death when it happened…and I haven’t since. It was awful and sad. Making art was her connection to the world during the horrific pain, though, like many invisible conditions, you wouldn’t be able to tell as she looked fine in photographs taken from her bed. Putting makeup on was her connection to the living. Despite all this, she was as sweet as can be. When she could, she curated darker surreal art for her IG page (@shewalkssoftly).
Zebra Tales is inspired by rare disease patients like Dana and me, who are often referred to as “zebras“. Zebra stripes have become a representation. ZT was the last personal illustration I drew before focusing on starting and finishing, Yumi and Monster. I’m hoping to get back to drawing personal art with the last 2 working fingers I have left before I no longer can (drawing with my thumb on an iPhone).
“We are the Zebras; the rare, complex, undiagnosed, and multi-systemic disease patients attempting to heal in a medical system designed to see only horses. Our stories often remain untold, neglected, or invalidated in the current medical paradigm. But we have the power to touch hearts, open eyes, and expand minds beyond reductionist diagnostic practices. By sharing our challenges and experiences, we help raise awareness of the need for compassionate, accessible care in complex medical cases.” -Dana Anahalt
I sent this Zebra Tale piece to my former neurologist for her practice, and I’m happy that a little bit of Dana’s story gets to live on and be a point of interest to those who live the same kind of life.
Below is an IG post I wrote in September 2025, the night before Yumi and Monster released. Sentiments are the same today:
September 1, 2025 / “Instagram VS Reality. My picture book, Yumi and Monster, which I've been writing and illustrating for almost 7 years, is out tomorrow, September 2. The moment that inspired this story happened in 2012, 13 years ago! So, this picture book has been a long time coming. It's also my debut. It is inspired by my rare and progressive form of muscular dystrophy.
This should be an exciting time, but admittedly my emotions on my first Book Day Eve are varied. In true form, I thought I'd be honest and share how I've really been feeling about my impending Book Day.
I almost sent a version of this confession to my agent in response to a recent text, but I decided to share it here. This should be the happiest time, but mixed emotions are more accurate. As I neared completing the book and reaching milestones, there have been sprinkles of tangled emotions.
My story is really coming out. You can want something while simultaneously being afraid of it.
Fear has been a significant part of my journey; an integral part of my decisions and advocacy since 2006, shaping my life in countless ways. Even during my teen years, when early signs of an enigmatic, ultra-rare muscular dystrophy cast a shadow over my future, fear was a constant companion.
Since our return from Asia, book emotions have been predominantly melancholic and grief-stricken, rather than filled with excitement. This sentiment has persisted throughout the year. I've been diligently going through the necessary steps and getting what I need done for my book. But there’s been a part of me that didn't want to celebrate the completion of my book, completely bypassing launch parties and events for bed instead. Sometimes, I just don't want to be seen. Being the focus is not as appealing as it may be for some.
The completion of my book also signals yet another imminent loss; my first and last book that I will illustrate due to weakened fingers. Drawing will very soon be another loss to add to the list of past loves.
It's not that I'm not grateful. I'm immensely thankful and aware of the difficulty in even getting a publisher to believe in you. Not to mention the incredible publishing experience I've been fortunate enough to have. My Yumi team is amazing; they believed in me and pretty much let me do whatever I proposed. I know this isn't the typical experience, especially as a first-time author-illustrator, so being grateful couldn't even begin to express how I feel, but like everything, there's more.
I’ve been drained and feeling down. My body is progressing, of course, but this milestone feels like another "crucial" one. Just like when I lost the ability to use my legs, raise my arms, and feed myself, this next milestone of very limited finger mobility has left me unable to even hold a drawing utensil or spoon anymore, making me feel like I have at other major milestones, scarily asking myself earnest questions like, “How am I going to keep doing this?"
What's been nagging me these days?
My body's bitter diatribes combined with the daily screaming news, and watching my 17 1/2-year-old senior dog with dementia progress with every rising and setting sun… Watching my beloved Pippi with such frustration and confusion as her body deteriorates to near immobility is… heartbreaking. I know her looks and thoughts too well, and the realization that her days are numbered is more than I can bear; a part of every daily thought.
My body is in increased pain and fragility, sparking vulnerability most have never experienced. The news of millions of the most vulnerable from disabled kids to elderly who have lost their healthcare just so the ultra-rich can have more yachts. The news of kids and people being taken by nameless masked men, based on how they look, denied their rights and due process, and illegally deported to foreign jails, children worldwide suffering from famine, and bombings causing mass murder and disabilities. Babies orphaned and burned alive by our bombs—the grief, the crimes against humanity...I wish I could say that this is new, but it's not. Whether it's Gaza, Sudan, or the Yemen famine our tax dollars created years ago that continues to take lives today, humanity never learns, repeatedly playing the broken record of human history. We continue to fall for the manufactured consent of power, annihilating our neighbors. The inhumanity, selfishness, greed, the power struggle, exploitation, and systemic abuse, physically, financially, and sexually—are all just a few floating thoughts lately. Going through any of this calamity as a disabled person consumes my daily mind.
There's also the fear of a book release, my story itself, because it means more people will be watching me, more eyes to witness my failures, more pressure, more responsibility, more people to hate me when I make a mistake, more people to watch me give up, more to witness my progress towards complete immobility with only the ability to blink, or worse, the rare case of tracheotomies or death.
I don't mind being a public advocate. I believe it's important, but sometimes it can be draining to be the poster child, especially when I'm actively going through stages of grief—playing the playlist of loss on repeat. This isn't something in the past; it IS happening every minute, every hour, every day since I was a teenager… so you’d think I'd be an expert at it by now, but every milestone is new. The loss & vulnerability can feel like I'm surrounded by concrete, unable to move, be seen or heard, with only my dreams and thoughts to escape.
The grief is always looming, but there is satisfaction in knowing, through trial and error, that there’s always more if we continue to explore. So often life doesn’t look like we had planned, and because we evaluate each other and our lives by a very linear structure of what a life is supposed to look like, most of us are constantly unhappy because we’re looking at what isn’t instead of what could be. This is a lot of what my message in my picture book, Yumi and Monster, is about, where the forlorn Monster, representing my muscular dystrophy, only knows that his purpose is to follow Yumi, and he invites her to be a part of him using only the words, “Let’s explore.”
As my picture book, Yumi and Monster, is released, I'll be participating in more interviews, podcasts, speeches, and after being an advocate for nearly two decades, I'm used to this, but it can still be challenging, especially considering the vulnerability that comes with my advocacy.
If you know me, you know that I'm not very good at hiding my emotions. My husband often says that I'm an open book; my feelings evident. This picture book, which essentially represents the thesis of my experience, is likely to evoke tears during book events and readings. Don't be sad for me. Think of my tears as droplets of love...for everyone who feels alone and has struggled, because I've been there, and many days, I still am. It's natural to feel uncomfortable being vulnerable and to cry in front of others, especially strangers, but I made a conscious decision a long time ago to be honest about the disabled experience, and the earned tears are an inevitable part of this journey.
Be an explorer of life and an explorer of the self. Not every situation is as it seems. It’s up to us to try to mold our life to be the closest to the vision of who we are. For myself, it is not untrue that I have lost pretty much all physicality; but my mobility is not gone, it’s transferred to my mind. While the constant loss of the physical is excruciating, I can tell you that living in and through your mind is also a beautiful place to be.
Through the turbulent times of disability and chronic illness, I try to remember there’s always more and to promise myself to keep trying. I'm looking forward to everyone finally seeing my book for the first time, especially for so many of you who have been following and supporting this story since the beginning. Cheers to disability visibility! Cheers to being explorers. 🌟” -September 2025 IG post.
#KamsWheelsTravel @ https://www.instagram.com/kamredlawsk
read Dana’s 2-part story @ https://www.kamredlawsk.com/blogblog//zebra-tales-1
And
https://www.kamredlawsk.com/blogblog//zebra-tales-2