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, but I must admit that my emotions on my first Book Day Eve are varied. In true form, I thought I’d be honest and share how I’ve been feeling about my impending book day throughout the year.
I almost sent a version of this confession to my agent in response to a recent text, but then I decided to save it and share it here. Back to the point, right now should be the happiest time ever, but mixed emotions are more accurate. As I neared completing the book and reaching milestones that signaled its really coming out, there have been sprinkles of tangled emotions. My story is really coming out. Surreal. You can want something while simultaneously being afraid of it.
Fear has undoubtedly been a significant part of my journey. It has been an integral part of my decisions, and advocacy since 2006, shaping my life in countless ways. Even during my teenage 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 in July, my book emotions have been predominantly melancholic and grief-stricken, rather than filled with excitement. This sentiment has persisted throughout the entire 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 book launch parties and events for bed instead. I just don’t want to be seen. Being the focus is not as appealing as it may be for some. There’s also the fact that the completion of my book signals yet another imminent loss; this is my first and last book that I will illustrate due to weakened fingers. Drawing will soon be another loss to add to the list of lost 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-year-old senior dog with dementia who is progressing with every rising and setting sun, and 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. My body in increased pain and fragility, sparking vulnerability most have never experienced. 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.
The news of people being taken by nameless masked men, denied their rights and due process, and illegally deported to foreign jails, children worldwide suffering from famine, bombings, causing mass murder and disabilities, and 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 or the Yemen famine we created years ago that continues to take lives, humanity never learns, repeatedly playing the broken record of human history. We continue falling for the manufactured consent of power, annihilating our neighbors. The inhumanity, selfishness, greed, the power struggle, exploitation, the systemic abuse, physically, financially, and s3xually—are all just a few floating thoughts lately.
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, and more to witness my progress towards complete immobility with only the ability to blink, or worse, the rare case or tracheotomies and death.
I don’t mind being a public advocate. I believe it’s important work, but sometimes it can be draining to be the poster child, especially when I’m constantly going through stages of grief—playing the predictable playlist of loss. This isn’t something that happened in the past; it’s something that IS happening every minute, every hour, every day since I was a teenager. You’d think I’d be an expert at it by now, but every milestone is new. The loss and vulnerability can feel like I’m surrounded by concrete, unable to move, unable to be seen or heard, with only my dreams and thoughts to escape.
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 are always 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 those 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 crying 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.
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. Come by tomorrow and let’s celebrate Yumi and Monster’s BOOK DAY! Cheers to disability visibility! Preorder & share. 🩷
Preorder Yumi and Monster everywhere books are sold online, at your local bookstore & indie shops like bookshop_org @ https://bookshop.org/p/books/yumi-and-monster-kam-redlawsk/22325108
or my website @ Kamredlawsk.com/yumi-and-monster
Love,
Kam, Yumi and Monster
Follow book updates @ https://www.Instagram.com/kamredlawsk
#YumiAndMonster #KamDraws
