A sad, but triumphant farewell: Carrey Robinson Dewey

As a sportswriter, I deal in wins and losses. Those are usually pretty black and white. Someone crosses the finish line first. Someone scores more points.

It’s pretty rare that a person makes you reconsider terms you’ve used every day for decades.

That happened for me today as I stood in the appropriately named Epiphany Church in Anchorage, with hundreds of others celebrating the life of Carrey Robinson Dewey, whose four-year battle with ALS ended last Thursday afternoon at the age of 46.

I’ve shared a couple of stories from her journey with you here. I thought it only fitting that I give you a final update.

Carrey Dewey with her husband, Eric, their children, Colleen, Anne Marie and Ian, and other family members at the ALS Association’s 2018 Walk to Defeat ALS.

Carrey Dewey died of ALS. But the disease did not beat her.

What does winning, in this case, look like?

It’s an entire service that barely grazes on the years of suffering ALS caused, but instead remembers the triumphs, the laughter, the love and the unfathomable courage.

It’s saying goodbye to the people in attendance with a letter written to them personally, read aloud, thanking them for the light they shared, and expressing gratitude — yes, gratitude — and asking them to continue to embrace her family.

It’s having a Graeter’s Ice Cream cart in the reception afterward with the words, “A Gift from Carrey” above it.

It’s having had the foresight and creativity to dictate the details of your goodbye, even if she couldn’t dictate the timing.

Carrey Dewey suffered from ALS, and did not try to hide the suffering, in fact sharing it for anyone who wished to see. But she also didn’t let it stop her, no matter how much it slowed her down. In her final weeks, she went to see her daughter in “Beauty and the Beast” at Stopher Elementary. She went to Easter Mass. She went to her son’s musical at St. Patrick’s School. She made one, final trip to Dee’s Crafts. Even without the ability to move her arms or hands, she continued to write, eloquently, about her struggles, hopes and fears. Five days before her death, she was part of the ribbon cutting for the start of the Annual Walk to Defeat ALS.

No. They haven’t found a cure.

There are some things out there that will kill us if they befall us. And of course, in the end, something will get us all.

ALS killed Carrey Dewey. And that, to put it in stark terms, sucks.

But it didn’t beat her.

It should be no surprise. One thing she said during an interview in January continues to typify her approach:

“Whatever light that I shined on people … carry that light. This is not going to end when ALS is done with me. I would like to see people continue to put their faith into action. It’s been just a beautiful gift that I’ve received.”

I know as her family picks up and begins this life without her presence, they’ll miss even the ALS-related trials that were so difficult. They’ll miss every minute of her presence. But she gave her family and friends an example and spirit of which they can be eternally proud.

Even after she was gone, she still ran the show. ALS could take her grip and her strength. But it couldn’t keep her from dropping the mic.

For those who have been moved or inspired by her story and wish to get involved in helping in some way, one of her final posts on her blog deals with the subject. Click here for more.