PORTLAND, OR – The first time that I met the man who would become my father-in-law, he showed me his gun cabinet. I was intimidated, not so much by the guns themselves but by the concern that I was not going to have a lot to talk about with a man who owned a half dozen rifles.

That would be a real problem because I was — and am — very much in love with his daughter.

John really just wanted to see how I was going to react.

He had a fairly mischievous sense of humor. I have no doubt that that sense of humor played a major role in his ability to cope when he was diagnosed with ALS, more commonly known as Lou Gehrig’s Disease.

John was diagnosed with the fatal disease in 2007. The average life expectancy is five years. Many are gone within eighteen months. Only ten percent live ten years or more, which put John in some rarified territory.

Five percent — including, most notably, physicist Stephen Hawking — live 20 years or more.

On Friday, after 12 years, John lost his battle.

There Is No Cure

What the disease does is rob you of your ability to control your muscles. You lose the ability to move your arms, your legs, eventually swallow, speak. Breathe. Your mind, your awareness are not affected but you become a prisoner in your own body.

It progresses — sometimes slowly, sometimes quickly. But it always progresses. There is no cure.

There is more that is not known about the disease than is known. It’s not clear why people get it, or why some do and others don’t. Researchers know that military veterans are twice as likely to develop ALS than non-veterans. But they don’t know why.

Beyond that, little is certain. In about 90 percent of cases, there’s no clear genetic link, and nor is there a clear lifestyle link.

The ALS Association states that there are about 6,000 people in the United States diagnosed with ALS every year and that, at any given moment, there are more than 20,000 people in the United States with the disease.

Meanwhile, the ALS Foundation for Life has the numbers at just more than 5,000 each year being diagnosed and as many as 30,000 having it any given moment.

More people die from ALS each year than from Huntington’s disease and from multiple sclerosis.

There is a drug being used to help treat ALS — Riluzole — but it is far from a cure. At most, it helps slow the progression of the disease, giving some patients an extra few months of being able to function at a higher level.

But even with the drug, the disease marches forward.

More Memories Than Expected

John was visiting us in New York. He had been having trouble with his arms that doctors had not been able to figure out, but it was not a huge concern.

We were walking along Wall Street and there was a slight curb. He stepped slightly wrong and fell. That happens all the time to people. You step funny, stumble, sometimes hit the ground. What stood out about it was how he made no effort to stop himself.

He just went down.

It took a while, but doctors eventually figured out that it was ALS.

Once that was official, with its prognosis of doom, Amy and I moved to Oregon to be close to him, spend as much time with him as possible.

Twelve years later, we are still here, able to focus on more than a decade’s worth of memories that we never imagined we would have — holiday celebrations, birthdays, shopping at Costco, dinners out, trips to the farm in North Dakota, Yellowstone.

For a while, even though it was clear that the disease was progressing, it was at a slow enough pace that gave hope this could go on for years and years — Hawking-like length.

That wasn’t to be.

It should have been heartbreaking to watch your father-in-law slowly robbed of function, to see him go from walking with a cane to a walker to a wheelchair to a higher-functioning wheelchair to being trapped in a bed; to watch as he lost the ability to cut a piece of food and then lose the ability to even lift a fork.

In the hospital bed that was installed in his home, he went from being able to speak and move a little to only being able to open his eyes.

During that time, even though he could not respond, he would look at us when we spoke, very much seeming to understand. In the last week, that was gone.

In his last few days, he didn’t really open his eyes.

Courage, Grace

My father-in-law was diagnosed with ALS at roughly the same time that my kidneys started to fail. As lousy as dialysis was, as lousy as I ever felt, all I had to do was look at how he was handling his situation and realize that it wasn’t worth complaining about, that complaining wouldn’t change a thing.

There are all kinds of courage, grace.

My father-in-law embodied the best of them.

He faced a disease that is a death sentence and pretty much smiled his way through most of it.

I have no doubt that he had tough times, felt frustrated, depressed. We might have heard him say that he was not comfortable, even ask for help. But I never heard him curse his condition, give in to despair.

He laughed, smiled, joked. As a result, we did the same.

Once he was admitted to the hospital with a severe respiratory problem. He was having trouble speaking but still had plenty of fight. When the nurse asked him if he had signed an advance directive, what did he want them to do to keep him alive, he had one word: “Everything!”

The nurse repeated, “Everything?”

“Hell, yes,” he responded.

When he was taken off his ventilator on Wednesday afternoon, the nurse said he didn’t expect John to make it past 5 p.m.

Everyone knew he wasn’t going to give up that easily. He made it until Friday morning.

He always had fight, grace.

ALS is the disease that was the subject of the Ice Bucket Challenge fundraising efforts that started five years ago this summer. The challenge has raised a lot of money — more than $130 million, of which $90 million has gone for research and millions more going to advocacy, care service, local chapters, and more.

It’s a start but not nearly enough.

I am thankful there are still people, like those who still do the challenge, fighting to find a cure, to raise awareness.

And thankful for my father-in-law for never giving up and teaching me to do the same.

ALS Resources:

The Linus Pauling Institute at Oregon State University

The ALS Association

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