Darin Nakakihara — or just “Mr. N” as he’s known to everybody at Tustin High — is the kind of guy who calls teaching teenagers his true calling.
He’s the yearbook and video production teacher who radiates enthusiasm, the one cracking that huge smile like the sun parting clouds.
See, his own life was changed by a teacher who gave him a love of photography when he was still a student back at La Palma’s Kennedy High. That set him on the path to wanting to be just that kind of inspiring teacher himself.
In 2013, he started a YouTube channel and began using Instagram to help fellow educators better use visual technology in their classrooms. “When I first started vlogging, one of my goals was to help a million students — and I made that for sure.”
Because when the pandemic hit, those lessons became even more vital.
“It helped so many teachers out there be able to teach online,” Nakakihara said during a — what else — Zoom interview from his Laguna Niguel home.
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He knows he helped people thanks to all the messages from around the world he received. “By helping all those teachers, I helped all those students.”
So when the unthinkable happened, when, on Nov. 9, 2023, Nakakihara went to the doctor for what he thought would be a routine post-op checkup and instead learned he had ALS — a rare, incurable and fatal disease that attacks the nerves that control the body’s muscular functions — he had one immediate impulse.
He knew he had to teach his final, lasting lesson: How to live with dying.
Wearing a “go find some joy.” baseball cap, Darin Nakakihara keeps up his mood after being diagnosed with ALS a year ago. He is surrounded by his family: daughters Kendall, 24, from left, Madison, 28, Brooklyn, 27, and his wife Denise, In Laguna Niguel Sunday, Dec. 15, 2024. Nakakihara has been chronicling his story on YouTube maintaining a positive tone as he explains the frustrations and indignities of living with a terminal neurological disease. (Photo by Mindy Schauer, Orange County Register/SCNG)
Wearing a “go find some joy.” baseball cap, Darin Nakakihara finds joy hanging out with his dog, Harlow, in Laguna Niguel on Sunday, Dec. 15, 2024. About a year ago Nakakihara was diagnosed with ALS. He is chronicling his story on YouTube, keeping a positive attitude despite the frustrations and indignities of living with a terminal neurological disease. (Photo by Mindy Schauer, Orange County Register/SCNG)
Wearing a “go find some joy.” baseball cap, Darin Nakakihara finds joy hanging out with his dog, Harlow, in Laguna Niguel on Sunday, Dec. 15, 2024. About a year ago Nakakihara was diagnosed with ALS. He is chronicling his story on YouTube, keeping a positive attitude despite the frustrations and indignities of living with a terminal neurological disease. (Photo by Mindy Schauer, Orange County Register/SCNG)
Wearing a “go find some joy.” baseball cap, Darin Nakakihara hangs out at his Laguna Niguel home on Sunday, Dec. 15, 2024. After being diagnosed with ALS a year ago, he is chronicling his story on YouTube and managing to keep a positive attitude even through the frustrations and indignities of the terminal neurological disease. (Photo by Mindy Schauer, Orange County Register/SCNG)
Show Caption1 of 4Wearing a “go find some joy.” baseball cap, Darin Nakakihara keeps up his mood after being diagnosed with ALS a year ago. He is surrounded by his family: daughters Kendall, 24, from left, Madison, 28, Brooklyn, 27, and his wife Denise, In Laguna Niguel Sunday, Dec. 15, 2024. Nakakihara has been chronicling his story on YouTube maintaining a positive tone as he explains the frustrations and indignities of living with a terminal neurological disease. (Photo by Mindy Schauer, Orange County Register/SCNG)
Expand‘Die Trying’
“You know what the weirdest thing about hearing you only have a few years to live is? You instantly realize that all the stupid things you used to worry about were just that. Stupid.”
Nakakihara says this as he looks into the camera in the “How it feels to be diagnosed with a terminal illness” installment he recorded May 19, 2024, for the “Die Trying” vlog on his YouTube channel. He beams to nearly 17,000 YouTube subscribers and 25,700 Instagram followers.
After the shocking diagnosis, Nakakihara sat in his car in the medical center parking lot Googling amyotrophic lateral sclerosis, ALS. The doctor hadn’t provided much detail, and Nakakihara had only a vague awareness of the ice bucket challenge that had been a big thing on social media, and Lou Gehrig’s disease, the other name for ALS. He remembers reading, “life expectancy: 3-5 years.”
The gravity of it all came into focus.
He says the experience of telling his wife Denise when he got back from that doctor’s appointment will be with him all the rest of his days.
How she had been distracted on a work call when he returned home. She’d usually gone with him to appointments following a spinal surgery, but those had all been routine, no biggie.
How they had clung to each other, sobbing for so long in the kitchen.
Denise had fallen in love with her husband because of his zest for life and his infectious energy, she said. “At the end of our first date, I called my mom and told her I had just been on a date with the man I would marry. My heart simply felt safe in a way I had never experienced, and I could not picture my life without him in it.”
Now they would have to tell their three adult daughters — Madison, 28, Brooklyn, 27, and Kendall, 24 — and all the rest of their family and friends that they couldn’t take time together for granted. Time stopped being measured in years but in weeks, days.
Denise explained, “It is a roller coaster ride of emotions. Now it has become hour-to-hour as Darin’s disease progresses.”
Meanwhile, Nakakihara started searching social media for content that told stories about the everyday reality of people living in spite of a terminal prognosis. He didn’t like what he found.
“I didn’t want to watch sad videos. I wanted to watch real and authentic people who are going through what I’m going through. I knew I could help people by starting this vlog. So I didn’t even hesitate, because there’s just nobody doing what I do out there,” Nakakihara said. “The ALS associations around the country are doing everybody a disservice by only telling those sad stories.”
He wants to underline one message in particular: “I want everyone to understand I’m more than my diagnosis. This is a deeply human experience filled with moments of courage, laughter and heartache. Those of us that are traveling on this path are the same people we were before.”
‘Go find some joy’
Off and on for many years he’d offhandedly say “go find some joy” in his Instagram stories and YouTube videos. But after his diagnosis, the little phrase took on a deeper resonance. He started ending every story with it. Now it’s the name of his website where followers can buy merch like hoodies and hats with the logo. The proceeds go to the GoFundMe campaign set up for his medical expenses.
“It resonated with a lot of my followers and they commented on how it was a good reminder for them to be purposeful in their pursuit of joy on the daily,” he said. “My wife likes to say, ‘We make our own weather.’ Meaning we have a choice in how we perceive each day. After I found out I have a terminal illness, I had a choice to make on how I would live the rest of my life. Instead of asking why or feeling sorry for myself, I chose to be grateful and seek out joy.”
That’s not to say sugarcoat. “Mr. N’s” followers count on him to keep it real and just be himself — from navigating the hassles of insurance denials to the fun of a Father’s Day meal, from the frustration of slowly being disabled with no real treatment options, to the excitement of a family vacation to Hawaii, made possible with a new motorized wheelchair.
“My willingness to share my ALS journey is, absolutely, tied to my impulse to teach. It is also a direct reflection of my mission on social media. I think whenever you’re authentic and you’re not really trying to get an outcome from someone, people really gravitate toward that. They can tell,” he said. “I get messages every single day from people that express their gratitude for helping them through a very tough time.”
Sudden appreciation
“I can’t justify why Darin would ever have to go through this,” Denise shares in the vlog “I Have ALS. This is My Story.” “He has given so much. He has such joy in helping others. He’s such an incredible mentor and leader to so many young humans, people coming up in this world.”
She adds, “What I have come to realize is that it is a series of realizing there are losses, then there is grieving that loss, then there is reconciling that loss, and then there is the sudden appreciation for what exists still today.”
Yes, ALS is a greedy thief. It has already stripped Nakakihara of independence: He can no longer drive and is in a wheelchair. He needs help eating and getting dressed. This filmmaker who has been a freelance photographer since his freshman year of high school can no longer hold a camera. He can no longer play the guitar at church or dance “— and might I say, I was a pretty good dancer! I was an OG breakdancer and I used to DJ undergrounds. I thought all these things defined me,” he said.
Turns out, they didn’t.
So what does? Love for, and being loved by, others.
“My greatest source of strength is my wife Denise. She is my rock and has not wavered even once through this whole endeavor. We’ve been married 25 years,” he said. “I cannot believe how many people have shown up for me through all this. Our neighbors have rallied. I have friends that come and sit with me every day and my co-workers still check on me all the time. It’s...
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