Saturday, March 16, 2013

Whiting: Couple copes with ALS, beats odds | charlotte, one, writes ...

Hanging with the McNeills of Irvine takes a little getting used to. As with many couples, Ed McNeill does most of the listening and his wife, Charlotte, does most of the talking.

But this couple is different. Ed has struggled with Lou Gehrig's disease, also known as ALS, for 33 years ? more than six times longer than doctors expected him to live. Like theoretical physicist Stephen Hawking, Ed uses a speech machine to communicate.

Ed and Charlotte McNeill of Irvine have been married 48 years. Although Ed has had a 33-year battle with ALS, he is writing his fourth book, one character at a time.



But nothing, not even paralysis, keeps Ed from enjoying life. Along with watching his grandchildren play, he also writes books.

A former Marine company commander ? and his service may have contributed to his ALS ? Ed knows how to persevere. And so does Charlotte.

With a laugh, Charlotte shakes her head in wonderment over how their marriage is like so many others in so many ways.

Although Ed can't talk, the couple still argue ? and still laugh.

? ? ?

Conversing with Ed requires exceptional patience. As we talk, his caregiver helps him choose his words on a tablet, letter by letter. We eventually agree to a series of emails. His answers are woven in this column.

Not only does the couple endure Ed's ALS together, they also suffer the loss of a child. Their middle child of three daughters, Maura, died of a drug overdose in 1994. She was 27.

After 48 years together, the McNeills share several secrets about staying married. One is as simple as their "in sickness and in health" vows. Both strong Catholics, they take vows seriously. Another secret has to do with humor.

Of their long-lasting love, Ed jokes, "I like to think it's because I'm so charming or my personal magnetism ? but Charlotte may have other ideas."

Charlotte chuckles as she shares a story that reveals how difficult it is to be a caregiver ? and how important it is to maintain a sense of humor. Five years ago, she ran into one of Ed's former doctors. After letting the physician know her husband was still alive, the doctor joked: "Really? I'm surprised.

"I would have thought you would have strangled him by now."

As we talk, Charlotte makes grilled cheese and tomato sandwiches ? mine with crust, Ed's without and cut into small pieces so his aide can feed him. It's a reminder of how serious things may get.

Ed's wheelchair, which supports his head, is designed to assist with everything except eating and breathing. For now, Ed can do those things on his own.

But if it comes to a feeding tube and breathing machine ? and the McNeills pray for a cure to ALS ? Ed plans to let nature take its course, to die with dignity.

I tease Ed for being such a handful. His eyes twinkle and he smiles broadly.

? ? ?

Since being diagnosed with ALS, Ed has written four books. To write, he must have someone strap his arms to moveable supports and ? if it's a good day ? Ed slowly types with two fingers. He uses no outline, limits his research to what he remembers and keystroke by keystroke slowly transforms an imaginary world into a story.

"I become one with my characters and try to think how they would react and think in a given situation," Ed says. "Knowing where I'm going would spoil the experience for me ? that's why I never use an outline."

I ask why he hasn't written about ALS. That, Charlotte explains, would destroy much of the reason Ed writes. His books create an alternate reality. I'm reminded of one of Ed's characters running, something Ed hasn't been able to do for decades.

In his latest book, "Downsized," Ed writes about a boozy newspaper reporter who is laid off. Again, I tease him, this time for sneaking into the Register's newsroom for research. He grins, laughs silently and shakes from head to foot.

An excerpt: "He walked the empty neighborhood streets for about an hour, reminiscing about the happier times he and Glenda and the children had shared (living in) their dream home. When had things changed? He couldn't pinpoint the start of the decline.

"Aw, the hell with the past. I've gotta repair the future before I have none."

In some respects, Ed could be writing about himself. When he was 11, his mother died and Ed was placed in an orphanage. Ever since, Ed is all about the future.

With a determinedly positive outlook, Ed explains, "I have a few things on my bucket list when a cure is found. Among these is a trip to Israel, to walk the Holy Land, and finish writing my life story, 'Humble Road,' with a happy ending."

In the meantime, Ed looks forward to a certain meeting.

? ? ?

In Ed's bedroom, there's a prominently displayed photo of four men in their 70s. One is Ed, happy as heck regardless of the fact that he's no longer able to stand shoulder to shoulder with his old friends.

Just as they do every year, the men will come together in September in San Diego. Ed shares that his pals exemplify the Marine motto, semper fidelis ? which means "always faithful" ? or semper fi for short.

"They all live on the East Coast," he writes. "That should show you how much they are willing to sacrifice to spend a weekend with an ill buddy. I'm sure none of the three think it's a sacrifice."

The reunion is about personal bonds. But it's also a reunion that plays out in surprisingly similar ways across the nation.

After much debate, Veterans Affairs in 2008 agreed that ALS is considered a service-related disease. Most of the early research focused on Gulf War veterans. But eventually studies concluded that men with any history of military service have a 60 percent greater risk of contracting the disease than men with no service.

Charlotte says the VA decision has saved them from going bankrupt. Above Ed's bed, there's a ceiling lift, something he calls a "sky hook." Nearby is a recently remodeled bathroom that allows Ed to roll in and shower.

Without VA benefits, neither would exist.

As I say goodbye to Charlotte, she mentions it's been a quarter century since she had an in-depth conversation with her husband.

Perhaps in the future, Ed will talk. Perhaps not. Still, as the years slip by, two words will endure.

Always faithful.


David Whiting's column appears four days a week;


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