Thank you to the Anton Yelchin Foundation for choosing me for their Anton Yelchin 2020 Artist Grant!! ❣️

I wanted to share my own little journey in discovering who Anton was and I thought Anton’s story was important enough for a blog post.

Before I applied for this grant my limited knowledge of Anton was he was an actor and from the Star Trek movies. But in my typical love of research, I wanted to really learn about Anton before applying so I watched, “Love, Antosha”, a documentary about Anton's life spear-headed by his adoring parents. And, what I learned was Anton seemed like a true artist – connected to many creative facets outside of acting like, photography, writing, singing, music and an aspiring director.

As you go through the documentary, series of actors and directors who worked with Anton give you a sense of his uniqueness outside the mainstream Hollywood glow — he was someone who corralled many creative facets intensely dwelling inside him. Anton seemed like a genuine creative energy, sparked with a matching curiosity and freedom of expression – approaching creative synapses philosophically and emotionally. He seemed complex, thoughtful and a soft-spoken, compassionate intellectual. This wasn't about fame, this was about art and creative expression.

I learned of his journey to America with his Soviet-Union born Olympic figure skater parents who immigrated to America in the 90s as refugees with baby Anton.

Anton was their only child.

I learned that he and his family deeply worshiped each other, exhibiting a familial closeness not everyone is privileged to have. 

The three of them were each other’s best friends.

This made his death all the more devastating. I can only begin to imagine losing a child and the worlds that collide and explode — disintegrating reality into a trillion depths-of-despair particles. Most everyone loves their children but this seemed like a closeness not everyone achieves.

On Sunday, June 19, 2016 at 1 AM, Anton's friends found him dead, pinned between his still-running Jeep and his home security gate. Anton was 27. He died of blunt traumatic asphyxia due to a faulty 2015 Jeep Grand Cherokee gearshift that was part of a massive recall. Anton's Jeep had rolled down an incline and pinned him, leaving him incapacitated to express even a single breath. 

The irony of dying because he couldn't breathe is unreal since Anton secretly lived with a rare disease called Cystic Fibrosis (CF). CF is a respiratory genetic disorder that severely damages the lungs, digestive system and other organs. A defective gene causes mucus that normally is thin and slippery, to be thick, sticky and impassable — blocking airways and ducts. Cystic fibrosis is incurable, progressive and life-threatening, leaving those afflicted with a life expectancy between 30s, and rarer, 50s.

Knowing Anton had Cystic Fibrosis, when I listened to his voice you could hear it combined with the way he coughed. The quality matches some other people I know with CF.

As Anton got older his disease started climbing, becoming more intrusive, but it didn't stop him. He proved you can still be positive, push through adversity and make your deepest dreams a reality. He chased his passions and stayed true to his own creative integrity and craft by choosing roles that were character based over fame and typical blockbuster hits. 

Towards the end of the documentary I saw some of Anton's journals as he shared about his rare disease. Anton kept his rare disease a secret including keeping it from some of his closest friends who only learned about his Cystic Fibrosis after he died. I sensed that some of the reasons for this secrecy was he didn't want people to pity him as well as the concern he may not receive acting jobs due to his “disability”.

This is a common fear and reality for many people with disabilities. 

Near the end of Anton’s life he realized that he had always been quiet about his disease. He would research #CysticFibrosis on Instagram and see all the CF and disabled advocates freely sharing; proud and fighting so hard — something he always shied away from.

How can one be proud of something so difficult?

But he seemed to finally realize maybe now was the time to publicly share and that he should be proud because it is an experience most never have to face. 

Right before Anton’s freak accident he was in a place where he wanted to publicly talk about his rare disease and inspire others who were going through it...but then he died. Too soon.

As I watched the documentary I felt a kindred spirit with Anton as he conveyed how creative and curious he was, and that it was his disease that motivated him. Perhaps this is why he got so much done in his short life.

His experience compelled him to fall in love with his dreams. He had a genuine interest in all things people and unusual, and seemed like he tried everything. He was always thinking big and considered himself a student of life; a seeker; always pushing, always exploring — something I categorically relate to. My fascination with unusual characters, strange places and unique situations I’ve put myself in are for the same reasons. I want to experience the gamut of humanity and experiences. And in my quest to search for life and freedom I have some of the most amazing memories and stories with some of the most far out random characters — every one of them I’ve learned something from even if I only knew them but for a moment.

I think in the very same way my own progressive, muscle-wasting disease has affected my life, perspective and character, affected Anton in mirrored fashion.

Be Creative. Be Clear.

By the end of his story I saw Anton not as a Hollywood actor, but rather a kindred spirit; someone I could be friends with very easily.

In his short career Anton acted in some 69 films and tv shows, many of them independent. 

I’m making my way through Anton’s list of films.

He had dreams of one day directing and believed cinema should be used as a “tool to explore ideas of existential nature and our existence as human beings on this earth.” His dream of becoming a movie director was coming true as he received news that his first film was being funded.

But then he was tragically taken in a collided sequence of events. 

Anton’s parents still visit his grave at Hollywood Forever Cemetery every day. 

Irina Korina and Viktor Yelchin have since been major donors of Cystic Fibrosis research and began Anton Yelchin Foundation with the mission “to empower and support young people engaged in creative arts who face career challenges due to debilitating disease or disability.”

Through this pain I think they are doing something important in not only continuing their son’s story but beginning the advocacy he never got to do. As someone who has been a twelve year-long public advocate for my very rare and progressive muscle-wasting disorder that is taking me to complete immobility, I understand perfectly how difficult it is to be a public advocate for something that is a daily struggle. It’s not always easy and you don’t want people to view you only as a disabled entity, because we’re so much more. We are not defined by our physical attributes, yet it is our stories, life events, our passions and interests that outline the complexities of our existence.

We’re you, we just mobilize differently.

But I also feel pain that this was something Anton felt he had to hide about himself. There is a journey for all of us in coming to terms with aspects of ourselves, life, mistakes and struggles, and no matter how difficult it is to share, the good it does in telling others, “You are not alone.” is powerful.

Society often deals in “black or white” with very little nuanced discussion which leaves those who are on their own unique spectrums of ability or experience to feel shame and embarrassment over who they are. And, this is why I share my life so freely. I’ve always been in tune with other people’s feelings and loneliness. It’s an emotion I’m intimate with and have known my entire life. And since I know these feelings well, this experience compels me beyond my shyness and desire to be an anonymous shadow in the background.

It’s ok to share. And, it’s ok to remind everyone that all of us are just humans trying to figure this life out.

This is how we are more similar than dissimilar.

Thanks to Anton and his parents for this grant and for sharing Anton’s story with us. And, thank you for empowering artists with alternative mobility plans and chronic illnesses. 😉❣️❣️

Anton’s documentary about his life, “Love, Antosha” is currently streaming for free on Amazon Prime.

My art gallery

Follow my wheelchair travels, art and mini-memoirs at Instagram.com/kamredlawsk and Facebook.

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