Filling up a lifetime

When he began feeling cramps in his left hand, Doug Oakley attributed it to age and figured he needed to eat more bananas. It wasn’t until he had trouble holding his hockey stick at the regular Tuesday night games that he went to see his doctor.

One appointment quickly led to another, until Oakley was sitting in a drab room in a Boston hospital with a neurologist who told him in a jarringly casual manner that he had amyotrophic lateral sclerosis – Lou Gehrig’s Disease. It meant that Oakley could well be dead within two years, probably within five years, and the descent – his body shutting down around him – would be a miserable one.

That was December 2008. You might assume he’s spent the time since with a blanket on his lap trying to comprehend a fate that is truly incomprehensible.

But here’s what Doug Oakley has done instead: He’s skied in New Mexico and the northern Rockies with his nephews; he’s blazed across the Canadian plains in a snowmobile; he’s drunk too much beer in beachside bars in Key West with his best friends from junior high.

He’s climbed mountains in Croatia to meet visionaries who claim to talk to the Virgin Mary. And he’s gotten on his motorcycle in Florida and ridden a four-corners loop around America, to Southern California, up the Pacific coast, and then along the northern border to Maine over the course of 26 exhausting days. Along the way, he gulped in the beauty of the desert, the mist of Big Sur, the grand patches of land in the middle of America – along with countless cans of beer, every one chronicled in Hemingwayesque fashion in a blog.

“He wants no regrets,’’ said his friend Michael Reilly. “While he’s able to do things, he’s going to do them.’’

When I caught up with Oakley this week, he didn’t look much different from the guy I knew growing up. His hair is gray now, the bags under his eyes a little fuller, his left arm, the affected one, usually tight to his body – the only sign of his disease.

At 47, he still carries that same mischievous look, quick with his (not always positive) opinion, street-smart more than book-smart. Back in the day, if you split a six-pack with Oakley, you drank the first two fast because you knew he was gunning for four.

He confided that the toughest times are late at night, when the phone isn’t ringing, when his mind isn’t plotting his next adventure or contemplating his next deal as a mortgage broker, when he’s in the dark with a future that he can’t prevent. “It’s quiet, nothing’s moving, and you feel the tremors – the body killing itself,’’ he said.

By day, he’s remarkably clear-headed. Of his trip to Medjugorje, Croatia, he said, “Most people pray to be healed. I just wanted to pray to be able to deal with this, to be a good example for family and friends.’’

Of his fate, he said, “Being dead is a foregone conclusion. As they say, no one gets out alive. Being a burden, that’s different.’’

Since his diagnosis, he’s helped raise some $60,000 for a highly lauded organization in Falmouth known as Compassionate Care ALS that assists patients and their families with the incurable disease. He’s not done.

Oakley hesitated uncharacteristically before confiding a dream: He wants to get a Winnebago, drive it to every state capital, and raise $20,000 on every stop. He wants to use the million dollars to build a retreat by the beach with CCALS in Falmouth for people dying of ALS and for their families.

He acknowledged the planning required, the many moving pieces, the fact that his time is fleeting. His wife, Patricia, said later, “Thinking big, having big dreams, it keeps him going,’’ and I could tell from his tone that he may be crazy enough to try it.

Where others might bow to death, Doug Oakley is trying to wring every last drop out of a well-lived life – a good example indeed.

Brian McGrory is a Globe columnist. He can be reached at mcgrory@globe.com.