Fred Dickey

Fred Dickey is a writer living in Cardiff, CA, USA

ALS Patient and His Family Deal with their Awful Reality

By Fred Dickey 

Originally published October 15, 2012

John Constans looks at his hands in sorrow. They no longer have the strength to trim a 737 jetliner or repair the water heater in the family garage — achievements that made John proud because he did them well, both large and small.

John loved his life’s work as a Navy pilot, PSA pilot, captain for US Airways and then as simulator instructor, passing on his skills to young pilots.

That’s gone.

John enjoyed his life as co-head of household with his wife, Lin, and father of two grown daughters.

That’s gone.

John is a gentle, kindly man with a supportive family and many friends.

That remains.

John has had his life invaded — actually, taken over — by a motor neuron disease that has no known cause but an unavoidable end. Its name is ALS. If you’re up on such things, you might call it amyotrophic lateral sclerosis, or you certainly know it by its more chilling name: Lou Gehrig’s disease.

The usual pattern of the disease leads rapidly to muscle weakness of the limbs, muscle twitching and cramping, thickening speech and difficulty in swallowing and breathing. Drugs are of little value.

At any given time, 30,000 adult Americans suffer from ALS. The condition is not contagious.

By any name, it is a torment with no cure. It leads the patient down a dark path to a respirator and paralysis of the entire body except the eyes. But the mind — the mind remains aware. And then, after a few years, death.

These are grim words, I know, but what other ones would you have me use that measures what John is facing? I am not going to sugarcoat his struggle, just as he determines not to do. I know these words do not shock him because he thinks of them every day. He knows them by heart. One does not diminish horror by refusing to speak its name.

The first day of the rest of John’s life was in July 2011. He couldn’t ignore worrisome signs that had grown more insistent over six months. The problem first caught his attention that January. While vacationing in Hawaii, he discovered that swimming was strangely exhausting. He dragged himself from the surf, then reminded himself that he was, after all, 66. He shrugged and forgot it.

But he gradually grew weaker and was often out of breath. Fatigue became troublesome. Certainly nothing near alarming, but enough to go in for tests. He underwent a lengthy diagnosis, then, finally, the results were in.

His wife, Lin, tells what then happened. “I learned later that they [doctors] have a protocol for these things: It should be the last appointment of the day, and that all other patients would be taken care of and out of the way. There is a certain way you’re told things, but it’s delivered straight.

“[The doctor] said, ‘This is what you have, and it’s progressive, and generally the life expectancy is three to five years. I just think you would want me to be truthful with you.’ ”

Lin continued: “When the doctor started talking about it, I can remember grabbing John’s hand. With the other, I was digging my fingers in. We were in shock.

“Walking back to the car, John said, ‘ALS. You know that’s what Lou Gehrig died of.’

“ ‘Yeah,’ was all I could say.”

John’s mind froze at the news. “I was stunned. I had no clue. No clue. How could this be?” But after a confirming diagnosis and further degeneration, he had to accept the truth.

And as doctors had told the couple, it started. Slowly at first, but everything worsened with the dulling certainty of a metronome.

It’s a disease that attacks the whole family, and must be fought by all. Red eyes are common in the house. Lin has geared up for the duration. She is John’s caregiver, and she’s practical about it.

“I think maybe I’ve gone back into ‘mom’ mode, taking care of all the little things for those dependent on you. As he can do less, I have just to do more. And so far I’ve been able to handle it. The physical part sometimes gets to me. I think I just ignored household repairs and things because I knew he was so good at it, but now he can’t do it.”

This is not a “Pollyanna” script. As Lin takes on functions that formerly were John’s and hustles to keep atop her real estate business, there is occasional impatience and frustration. She tells of changing a vacuum cleaner belt while he instructed. It did not go well, either mechanically or emotionally. But they understand that as roles shift, hurt feelings are bound to occur yet will quickly pass.

Lin’s gritty steadfastness has deepened John’s appreciation of his wife. His voice doesn’t sound quite so labored as he says, “She’s stepped up, big time … big time.”

Fortunately, they have avoided most of the usual money squeeze that goes with the disease because of excellent insurance and medical care from the Department of Veterans Affairs, which both praise lavishly.

•••

It’s June, and John can no longer easily stroll around their comfortable home, modest by the standards of über-upscale Rancho Santa Fe (where they live). John spends hours sitting in a soft recliner, but he can find little comfort. He often twitches and twists to find a better position and ease muscle cramps. Behind him, past the glass patio door, is the swimming pool that means nothing to him now and is no longer heated.

John says he can still drive a car. His coordination is fine, but his hand strength has so diminished that he has to turn the ignition key with pliers. “A year ago I was clueless. Had some minor issues with the disease, but doing OK overall. Now I get it. Breathing is a real issue, as well as walking, eating and speaking. Simple tasks are becoming more and more difficult. I can feel my body slowly shutting down.”

In July, the progress of his disease pushed ahead with the methodical pace of a trotting dog. “This week I got fitted for a power wheelchair. I can still cut my food and swallow, but I’m starting to eat more like a toddler than an adult.” His neck muscles are weakening to the point where he sometimes has to reach up and push back his slumping head.

He is in discomfort from the recent surgical implant of a feeding tube in his stomach. He has lost 30 pounds, mainly muscle mass, and the doctors want him to work toward regaining the weight. He is on a diet of 2,600 calories and can’t possible ingest that amount by his laborious eating, hence the feeding tube.

He can’t escape reminders of the disease. “I saw [physicist and ALS sufferer] Stephen Hawking on TV. He was in a motorized wheelchair and the only thing that moved were his eyes … scary.”

The Constans’ daughters, Ashley, 30, and Elise, 24, celebrated last Christmas at home as though nothing had happened. And nothing had. The parents elected to save the bad news for later.

Two days after Christmas, the daughters were shopping when they got a call to come home for a family conference. Elise remembers, “I asked what was up, and dad said, ‘You know what, guys? It’s not good.’ ”

Elise moved back from Italy to assist at home, and Ashley has helped organize fundraisers for ALS, as has Lin.

It’s August, and John is more aware of time and the value of it. Weeks, days, hours … just as he savors them, he’s more aware of their passing. He spends a lot of time thinking about who he is and who he has been. He reads some and watches a little TV, but it’s difficult to stay in one position for long.

“When I go to sleep at night, I think about certain stages of my life and what was I doing when I made this or that decision. It kind of gives me some peace. When I replay my life, I tend to go past the bad parts, the stupid stuff I did.”

He says he quickly becomes nostalgic, almost maudlin sometimes, as when he bursts into tears at the sound of a familiar song or the sight of a favorite movie. His thoughts, inexplicably, sometimes drift to the memory of listening to a Steppenwolf song, “Born to be Wild,” while in a holding pattern over an aircraft carrier off Vietnam.

He yearns to visit his boyhood home in Twain-Harte, a small town in the Northern California gold country. He aims to attend his upcoming 50th high school reunion in Sacramento.

“I think I’ve pretty much made amends with everybody I think I’ve pissed off,” he says with a smile.

Last January, John had to give up a job he enjoyed: teaching young pilots in a simulator for Boeing. He also could no longer deliver jets to distant destinations, something he relished in recent years. He truly loved flying. He loved planes, he loved his crew, he loved the sky. He even loved passengers.

I ask John how he is doing on the Kubler-Ross five-step stages of grief continuum, going from denial to acceptance. His dry humor flashes: “I guess I’m at acceptance. Denial didn’t do me much good.” Then, he adds, “You can only say, ‘Why me?’ so many times.”

John tries to talk to Lin about his no longer being with her. “She says it’s not time to talk about that. She’s more about keeping me going, not giving up.”

As summer turns to September, I can see the pain in his face as he twists his body in the chair, trying to escape discomfort. John tells me of his greatest despair — his morning preparations. “Before, I could shave and tie my shoes. Now, it’s an issue. Showering is a pain. I have to think about putting my feet into my undershorts and then my pants, and then getting my T-shirt on. Then I have to sit down because I’m tired. Every small daily function takes a lot of effort. I get tired having to work to breathe. If I get up from a chair wanting to do something, I’m already tired from just getting up. Normal daily activity is down to, ‘How can I survive the day?’ ”

The thought of eventually depending on others, even strangers, for help in the most basic, intimate bodily functions bothers him greatly.

“Much of the time my survival mechanism is my sense of humor, which I’m using more and more these days. However, as I look in the mirror I can definitely see the effects of the disease. I see a refugee from a concentration camp. Deep inside, I’m scared.”

Family things that have to be decided range from the mundane to the profound. Lin says, “We have to start thinking now about a van to be able to accommodate the wheelchair. John’s talking about finding a place in [Fort] Rosecrans to be buried.”

At the end of a lengthy conversation, I ask Lin what she most fears. Her eyes fill and her voice lowers. “That he might suffer.” Then, I ask what causes her to be hopeful. Her lip quivers and she looks down. “Nothing.”

I ask John, as gently as possible, if he has had thoughts of suicide. He chuckles and says that is the first thing his counselor at the VA always asks him. “I think about it, but I don’t see myself doing that. I can see why someone would go down that road, but I don’t want to do it. I just have too much support, and personally, my legacy, especially with my daughters, I wouldn’t want to mess that up.”

Asked about his thoughts on religion, John says: “I was raised in a formal church, but I’ve drifted away from that approach to a more self-directed spirituality. … Yes, I pray to God and ask for strength to get through each day. … I wonder what’s on the other side. I hope there’s something, but who knows?”

It’s October when I next see John, and the man who answers the door seems shrunken from the one I visited just a short time ago. John’s chin almost rests on his chest because of weakened neck muscles, and his arms and legs show little flesh below sagging skin. The short trip to the door leaves him gasping for breath.

“Don’t get out much, now,” he says. The high school class reunion in Sacramento didn’t happen, and the trip to the boyhood home in Twain-Harte is not going to. “That’s OK,” John says. “I’ve got good memories.”

He is coming off a disappointing trip into the operating room. Doctors wanted to strengthen his diaphragm to improve his breathing, but when they checked him arthroscopically, they discovered the diaphragm was not strong enough to receive an implant. The plan failed.

Recovering from surgery, he had an attack of ileus, an intestinal blockage that gave him what Lin says was “incredible pain” for several days.

He is almost totally nourished by his feeding tube now, as doctors try to load him with calories to forestall weight loss. Outside is a van modified for a wheelchair patient. It has been loaned by the family of an ALS patient that doesn’t need it anymore.

When it comes time to leave, I tell him I can let myself out, but he struggles to his feet and walks me to the door.

I look back toward the door and see not the same John Constans as in previous months, except for one thing: He’s still hanging tough.

•••

How do you measure a man’s life? Well, I don’t think you do. Only he and his family can do that, and ultimately, just himself. And, for John, that is what he values of what remains — time to make love glow and character strong. For that opportunity, he is grateful for every day left to him.

John knows he is heading into the unknown, a trip all must make, but each must make alone as supporting hands slip away.

John Constans is, like almost all of us, a resident of his own space and his own castle. When his day comes, he will be missed by his many friends, his aviation family, his family of hearth and home — and also, namelessly, by many thousands of travelers who were grateful every time the wheels kissed the tarmac gently. In all those years, not one of them failed to deplane safely. If he leaves any enemies, they are now in deep cover.

He will leave behind only his legacy, and that is what he is trying to shape with fading strength. Already the framework of that legacy is clear. It will be of a man who found his work useful and rewarding, who gave his friends and country loyalty and his family love. It will be of a man who looked this ugly disease in the face, and said, “I will not win, but the only thing of value you will take from me is life.”

John normally ends his emails with a circled happy face. I know it’s a cliché, but to John it means goodwill and good cheer.

That’s the way John Constans ends things.

Fred Dickey of Cardiff is a novelist and award-winning magazine writer who believes every life is an adventure. He welcomes column ideas and other suggestions; contact him at [email protected].

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