For years, Darin Nakakihara used social media to show what life with ALS really looked like. When the time came for his final message, however, he did not want the people who had followed his journey to remember him only through illness or grief.

He wanted them to keep living.

Nakakihara had been diagnosed with amyotrophic lateral sclerosis on Nov. 9, 2023, after first noticing problems with his left foot. As the progressive disease increasingly affected his body, he began documenting the changes online, eventually building a community of about 148,000 followers.

His decision to share so openly grew partly from his own experience searching for information after his diagnosis. He found support groups, but he felt there were fewer people openly showing the everyday realities of ALS — including how rapidly mobility, independence and emotional well-being could change.

So he began showing those realities himself.

What started as a record of his own experience gradually became something larger. His posts helped people living with ALS feel less alone while also giving their families and friends a clearer picture of what the disease could demand.

In his final farewell, Nakakihara looked back not with bitterness but gratitude.

He told his followers that he was leaving life feeling deeply loved and thankful for the people who had prayed for him, sent messages, shared laughter and stayed beside him throughout the hardest parts of his journey.

Among those people, none received a more personal tribute than his wife.

Nakakihara described her as his caregiver and the person who had supported him throughout the illness, crediting her love with carrying him through experiences that became increasingly difficult as ALS progressed.

He also made clear that although the disease had taken much from him physically, he did not believe it had taken the most important part of who he was.

“This disease took a lot, but it never took my spirit,” he wrote.

His message also turned toward the future — especially the future his wife and daughters would now have to navigate without him. He asked the community that had surrounded him online to continue showing his family the same love and support they had shown him.

Then came the part of his farewell that transformed it from a goodbye into a challenge.

Nakakihara urged people not to spend too much time mourning him. Instead, he encouraged them to take the trip they had been postponing, call the friend they had been meaning to contact, watch a sunset and hold the people they love a little longer.

His final instruction was only a few words:

“Go find some joy.”

For someone whose online presence had become closely connected with an unforgiving disease, it was a fitting final message.

Nakakihara had spent much of his ALS journey showing people what could be lost. In the end, he chose to remind them what was still worth holding onto: relationships, ordinary moments, gratitude and the decision to experience life while there is still time.