The gifts a movie legend left me

While you might recognize Val Kilmer from iconic films like “Top Gun” or “Batman Forever,” the first of his movies I saw was probably one of my mom’s favorites, “The Saint.”

It’s the story of an orphaned con artist who, stripped of his own identity in childhood, assumes aliases based on Catholic saints to live on the run. But his life changes when he’s hired to steal research from a brilliant scientist who ends up seeing and loving him for who he is.

It’s fun for me to get to share in my mom’s favorite media, and because she loves Val Kilmer movies, we watched his 2021 documentary, “Val,” shortly after its release on Prime Video. Composed of a vast collection of home videos and narrated by his son, who sounds just like him, the film tells the story of the actor’s life through his own eyes. And through my mom, it was within this story that I discovered my own deeply personal connection to Kilmer.

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Finding similarities and connection

Among the footage from the documentary are scenes from the hospital stay that led up to Kilmer’s throat cancer diagnosis in 2014 and subsequent tracheostomy surgery. But before any of that, he filmed his own arrival at the emergency room where he was wheeled in on a gurney without knowing what was wrong.

Living with SMA, I’ve also visited the emergency room a few times, and I received a trach in 2011 at the age of 13 amid a lengthy hospitalization and life-threatening illness. I’m grateful to have only hazy memories of this traumatic time and no video footage to replay. I largely piece together my knowledge of these events with stories from my mom, who remembers the whole thing.

I admire Kilmer’s bravery in vividly revisiting and sharing these moments. Through his camera lens, I could almost feel his fear and confusion during that time. Or maybe that was a resurfacing of my own emotions from long ago. Perhaps it was a bit of both, our individual experiences intertwining in a shared human experience.

As his cancer progressed, Kilmer eventually lost his ability to speak, which I also find relatable. My trach surgery saved my life and provided necessary access to my airway, although the original tube was slightly too large. It allowed air to pass freely through my lungs but not above the trachea, where the vocal cords are located. As a result, I was left without a voice for months before Mom and my medical team decided to try a smaller tube.

Until my speech was restored, I communicated with the sign language I had been learning with and from my mom prior to my illness. Finger spelling — spelling words in sign language — became the most effective method for us to communicate, and we taught it to some family, hospital staff, and home healthcare workers as well. Even so, it was hard for me to participate in real-time conversations.

I don’t know how Kilmer faced challenges in daily communication, but through the mediums of film and art, he found profound ways to communicate with global audiences, including me.

A positive representation

At the conclusion of the documentary, my mom asked what I thought. Despite my perpetually opened windpipe, my throat suddenly felt compressed with emotion, but I managed to utter, “I’ve never seen someone like me on TV before.”

Of course, I’ve seen lots of people like me on TV. There are characters with similar personality traits, and disability representation in media is rising. I even wrote about a beloved new “Doctor Who” character in a wheelchair.

But the only other times I’ve seen trached people on TV have been in unrealistic (yet entertaining) medical dramas or stigmatizing commercials that I believe do more harm than good. By returning to the public eye after his diagnosis, Kilmer became the first real person authentically and positively representing people with trachs in media that I’ve witnessed. And I needed that on a soul level. Because he chose to allow this part of his life to be seen, I felt seen, too.

To Kilmer, with thanks

Our whole family was saddened when Kilmer died on April 1 at the age of 65. I wish I’d published this sooner so he could’ve known what an impact his story had on me, but I hope these words may still honor him and offer some comfort to his children and others who knew and loved him.

If Kilmer could read this, I would simply wish to tell him thank you for the gifts he gave me. For living boldly and abundantly for all to see, with a trach and all. For contributing to a more positive future a scared 13-year-old in a hospital bed would one day experience and offering connection and affirmation to the woman she became. And for creating the inspiring role that became my favorite of his: himself.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.