Amazing Grace: Dean Harvey demonstrates courage, calm against rare and deadly disease

The 2010 Portland Marathon was supposed to be Dean Harvey’s last.

That’s what the doctors said. That’s what anyone with a passing understanding of Creutzfeldt-Jakob Disease would have said. This is not a condition that makes room for anniversaries. So last October, when friends and family of Dean pushed him on a three-wheeled chair through the half marathon, it was to make one of the final, happy memories. He stood and walked the last 50 yards under his own power. Cameras captured the moment.

Dean Harvey smiles next a Hawaiian sunset in August of 2010, on the day he renewed his wedding vows with his wife, Kathi. (Photo submitted by Kathi Harvey)

But Dean stretched his race with, and against, time. As runners line up on Sunday in downtown Portland to endure another annual race, consider this: Dean Harvey has endured another year with an incurable brain disease that is usually deadly within four to six months of the first symptom. He is on Month 22.

More than that, something inside Dean refused to yield even as infectious proteins invaded his brain, damaging one tiny piece at a time. Perhaps it’s the strength that comes from his parents, who moved to Oregon from Hawaii to be at their son’s side for the past year-plus. Or the love and support of his wife, Kathi, and their two children, ages 6 and 7. Or his many friends, and co-workers at Nike, where he was an executive for 15 years.

Something has kept this 47-year-old man, a former college baseball standout, going. And it is long past the time when he was prepared to say “Good-bye.”

“It all really comes from Dean,” Kathi Harvey said on Monday. “He has always been the most positive, encouraging, and inspiring person I’ve ever known. So it doesn’t occur to me to not look at it as a celebration of him being here.”

Unless Dean takes a dramatic turn for the worse – and that is possible, too – Kathi will walk the half-marathon on Sunday in honor of her husband.

The last time Dean spoke, and Kathi could understand him, was in August. A video of their wedding played on the television. It was their 11th anniversary. When the vows were spoken, Dean tried to say them along with the video.

“It was the best anniversary gift ever,” she said.

Dean cannot walk. For the past five months, he’s been eating pureed foods. He receives full-time care. And he knows he will die soon.

Months back, when Dean could still process his thoughts and speak them, he told Kathi he was leaving for a trip. “I’m going far away,” he said. “Going away, but I can’t take you with me.”

What bothered Dean was the feeling that he hadn’t packed enough for the trip.

Kathi reassured him that she would help him when it was time to leave.

The blessing in all of this, if there is one, is that there is very little physical pain associated with CJD.

Early in 2010, his symptoms began. He was having difficulty at work, forgetting things, missing deadlines. It was confusing and frustrating. He had to leave his job at Nike, where he was the general manager of Men’s Athletic Training, that June.

Dean Harvey (center) crosses the finish line with family and friends at the 2010 Portland Marathon. Harvey had been pushed in a three-wheeled chair through the half-marathon and got up to walk the last 50 yards. (Photo submitted by Kathi Harvey).

A San Francisco doctor diagnosed Dean in August of 2010. It’s CJD. And there’s no cure.

The doctor asked, “Do you have any questions?”

Dean had one.

“What would you do with the (remaining) time?”

The doctor said: “If it were me, I’d focus on my family and friends.”

That was easy for Dean. He already was doing that – and always had.Five days later, the family from Tigard was on a plane to Hawaii, where Dean and Kathy renewed their original wedding vows. Their children stood by them, as ring-bearer and flower girl.

The dementia continued and Dean’s cognition eroded away.

One night when Dean’s father was helping him to bed, Dean stopped abruptly, turned to his wife, and thought for a moment. “I have to kiss the lady good-night,” he said.

He couldn’t remember Kathi’s name, but the recognition has not vanished, even after the words are long gone.

Bob Wood, Dean’s boss for 10 years at Nike, stops by the house frequently to check on his friend or drop-off lunch. He leans over and begins to speak and witnesses Dean’s face come alive. There is something in the voice that Dean can still grasp onto.

“This thing is God awful,” Wood said, referring to the illness.

A year ago, when he could still carry on a conversation with his friend, Bob asked Dean how he could reconcile what was happening to him.

“I said ‘How do you feel?’” Bob said. “And he was at peace. This is the way it is. I’m going to spend the rest of my time with my kids. There’s no bitterness.”

Something in the way Dean lived, and in the way he is dying, there is a message for the rest of us.

Kathi has been journaling for more than a year through Care Pages. At last count, there were 791 followers of Dean’s story.

Many more will interpret what message, or lesson, Dean’s life has for the rest of us.

“For me, it’s a combination of the grace and acceptance that he has shown, along with fight and positivity,” Bob said.

Dean spent four years in Japan, heading up Nike Golf and taking on delicate negotiations while managing a new team. It was challenging work, and it was during that same time that his two children were born. He never complained about the assignment and the genuine warmth in his personality made it work.

“His patience and cultural awareness were really evident,” Bob said. “He was very effective in some pretty difficult situations.”

Dean was a rarity in other ways before his diagnosis. He was a nice guy who wasn’t afraid to be firm when it came to business decisions. And he was a fierce competitor, but also extraordinarily generous and never one to say a bad word against somebody else. Over the last 14 months, he has humbly accepted his fate and put his faith in God. He has persisted against the illness far longer than experts thought he could.

Kathi believes many of Dean’s traits are wrapped up in the Hawaiian word  “Imua,” which means “to go forward with spirit.”

Said Bob: “He just has a big heart and a lot of inner strength.”

Kathi describes the last year as a roller-coaster ride and for good reason. Periods of incrementally slow, steady decline are punctuated by surprising moments of clarity.

For much of the past two weeks, Dean was only able to ingest two or three Ensure nutrition drinks each day. Then, on Sunday, he woke up bright-eyed and hungry. He ate two eggs, canned pears, and more fruit after that. Monday and Tuesday, too.

It is incredibly rare that Dean has lived so long with CJD. Why has the disease moved so slowly? No one knows.

Eventually, Dean’s marathon is going to end. The finish line is coming soon.

The Imua will go on.

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