Thanksgiving Story: ALS, My Father-In-Law, And What I've Learned

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 has a fairly mischievous sense of humor, something that I am sure has contributed to his ability to cope with the fact that he has 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 18 months. Only 10 percent live 10 years or more, which puts John in some rarified territory.

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

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 awhile but doctors figured out that it was ALS.

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 and sometimes quickly. But it always progresses. There is no cure.

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

Beyond that, little is certain. In about 90 percent of cases, there’s no clear genetic link. There is no clear lifestyle link.

About 6,000 people in the United States are diagnosed with ALS every year, and there are more than 20,000 people living with the disease at any given moment in the U.S., the ALS Association says. 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, that disappears.

It should be heartbreaking to watch your father-in-law slowly robbed of function — a regression from walking with a cane to a walker to a wheelchair to a higher-functioning wheelchair. That is the path that John has been traveling.

There should be few things worse than watching your father-in-law lose the function of his legs, and arms, his hands, the ability to cut a piece of meat, the ability to even lift a fork to his mouth.

It should be excruciating to watch your father-in-law, who loves to travel and stroll through national parks, lose his ability to walk, then even to stand.

It's a matter of shifting focus, seeing something else.

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 look at was 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 and grace.

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

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

I have no doubt that he’s had tough times, been frustrated and battled depression. You might hear him say that he’s not comfortable, or ask for help. But I’ve never heard him curse his condition, seen him give in to despair.

He laughs, smiles, jokes. As a result, you do the same.

Even about one month ago when he was admitted to the hospital with a severe respiratory problem and was having trouble speaking, he was a man with plenty of fight. When the nurse asked him if he had signed an advanced 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.

It has been a rough fews but they are slowly getting easier. They are hopeful that he will be home for Christmas.

And for that, I am thankful.

For all that he teaches me about courage, I am thankful.

For all that he teaches me about life and love, I am thankful.

For having him in my life, I am thankful.

ALS is the disease that was the subject of the Ice Bucket Challenge fundraising efforts a couple of years ago. it raised a lot of money. But not enough.

I am thankful that there are still people fighting to find a cure, to raise awareness.

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