I GOT LUCKY ENOUGH TO SEE THE LUKI & THE LIGHTS NYC PREMIER

I wasn't invited. I wasn't emailed with a formal offering. I didn't have my name on a chair but I had a chair nonetheless.

Around 4:45 PM on March 22nd, The ALS Association posted that LUKI & The Lights would be "taking to the big screen for the NYC premiere". It didn't give a time or information on its closed attendee status. But I wanted to see it and had been waiting for the announcement of when it would become available. So like any good Zillennial, I looked up the theater the post tagged, and show times. 6 PM. Tickets weren't available but I figured it was a glitch since once again, no notice of it being closed to the public.

So down the 1 Train and a short walk later, I saw the step-and-repeat banner and the mini red carpet. There's no harm in going in; so march right in there I did. I was told it wasn't open to lil ol' me. But I smiled, and shared a little, and boom...I had a ticket and free popcorn.

Now, if you aren't aware, my dad was diagnosed Summer of 2016. Since it's a similar story to Luki, it makes sense to share. He broke his ankle on Father's Day weekend. He fell while getting off our boat. I wasn't there. I was at Firefly Music Festival and had just entered the site from our campground when my sister called. She never calls so in the miracle it was to even have service, her name on my phone was that much scarier.

We (the siblings) weren't aware that the injury wasn't healing / there was more to the story until a few months later. But I won't forget that phone call and the gut feeling that it was beyond the simplicity of a broken ankle.

But back to the present day, and sitting alone in the beautiful Cinema Village. Luki opens with a precursor, a message from its creators. However, it's not the animators or the director but the couple who have birthed this story as a way to explain ALS to their children. Sascha and Anjo needed a way to explain Anjo's diagnosis in the simplest terms but also convey the severity. He was 35 at the time and both their daughters were younger than eight.

I started my tears. It was and is heartbreaking to see such a young family be engulfed by such a difficult illness. It's intense for me to know those girls' only memories will be the late stages. It's cruel to think they won't get to see the Barbie Dream House in Florida with their dad, or have him throw them a Sweet Sixteen, or even go through the teenage phase where he "ruins your life".  It's the ache that they'll never know both the joy of their dad at all their graduations and the horror of him teaching them how to drive. But my heart goes to those little girls for more than that; it's more than the big moments. It's being able to go to a restaurant and not pre-measure the length between tables for ADA compliance. They'll never know parking the car in the back of the lot just to stroll under the sun a little longer rather than praying there's a handicapped spot open at ALDI's.

But once again, the movie hasn't even begun.

Until the lights dimmer and the music starts..

LUKI & The Lights has no dialogue. It's an educational film that is medically accurate and aims to help parents, grandparents, etc explain ALS to younger children across the globe. However, the whole "universal message" and "no dialogue" thing...makes it more emotional.

Luki, like my dad, had an injury that caused the tests to begin. Luki is a young robot with a light on each hand, arm, thigh, shin, throat, and so on. He has the brightest bulb in the center of his chest. He works in an office during the day and plays soccer with his two best friends until sunset and on the weekends.

His left hand light has difficulty staying on. He is challenged with his house keys and it's hard to type at work. After a soccer injury that was caused by his light going in and out, the doctor is introduced. Next, we see an x-ray of Luki's. It's his full body on a large screen. We see the doctor motioning that his hands will turn off, his legs will flicker and go black, then his throat, and eventually that bright light in the center of his body. It's so simple, so boiled down. Within a 90-second introduction of the medical journey, the only outcome is spelled out.

I don't succeed, but I do my best to avoid thinking of those lights related to my life.

As we continue, Luki is in high spirits. He is quickly moved to a motorized wheelchair but the smile never leaves his face. He races his friends around the hill and through their neighborhood. He cheers on the sidelines as the other two play soccer together. He isn't defeated and this is wildly all too familiar to me. They say laughter is the best medicine and this is something that my father firmly believes in. You don't have a good day, you MAKE it a good day. Luki and my father alike MAKE the most of each day whenever possible.

He goes to shout a hoorah for his friend after a goal, but instead the light flickers and goes dark. He's lost his voice.

Luki's story, unfortunately, needs to come to an end to serve its purpose. We see Luki on his bed with his two best friends at his side. He is being supported by breathing tubes. He doesn't look sad or angry. I wish there was a better way to describe the look other than the cliché "peaceful" or "ready" but he was. There are flashbacks of his friends' memories with him, through the illness and, not from beforehand. It's recollections of their love when being his caretaker. It's gruesome yet wholesome.

And then he smiles ever so slightly and the last light flickers and dims in the most emotional way. It needs to be seen to be grasped. I can't do the animation or power of the final scene justice with my silly little words.

Our theater lights come up and I'm doing my best to sniffle away my tears. I was speechless yet full of thought. I'm so happy that this movie now exists but so broken-hearted that it'll be played.

There were speeches and questions from the panel that put it together. Global Neuro YCare, the ALS Association, and Stitching ALS Netherlands were the forces that brought Sascha and Anjo's story to life. Emotionally, I couldn't stay for the business discussion. Unfortunately, on the way out- I did hear that Anjo passed last week after the debut in the Netherlands. So yes, I left sobbing on that note being the last in the song.

It would be foolish of me to not take this chance to also highlight the ALS Ride for Life Organization. It's an organization that I've trusted, donated to, and am looking forward to working more closely with soon.

But once again, I'm so happy that this movie now exists but so broken-hearted that it'll be played. But if this story/post/diary entry means anything, please remember to make the most of every day that you have, for yourself and with the ones you love.

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And Dad, I know you'll read this as my biggest fan and email subscriber. I'm sorry that this is the hand. You might've "ruined my life" when I was fifteen but you've also given me the biggest personality, humor, handsome genetics, and literally the "How To Win Friends and Influence People" book. I didn't get your math skills, but I have your wicked memory (when it comes to everything but trimming the hedges) and there isn't a moment that I don't replay. Thank you for being the most wonderful parent, an example of a gold heart, and a hype-man for mommy. I love you and hope for many, many more "do you wanna go to the Flats?", "Let's go Buffalo", and "Can you just get me a bowl of cereal?" together.