On death’s door, I fear the night: A tale of appreciating the greatness in your life

I am for Team Gleason! No white flags!

If you’ve been hiding under a rock or living in Canada, and don’t know this story, watch the new documentary about Steve Gleason.

Its raw, real, and completely inspiring.

It’s about an ex-NFL player for the New Orleans Saints, who inspired the world through his battle with ALS.

It’s 5 years of his memoirs in video format, directed to his son.

For myself, this all took a much more personal touch for a couple of reasons. For one, Steve Gleason was 34 at the time of his diagnosis, the same age I just turned…

And secondly, ALS has a personal connection with my family. But more on that later.

It was touching to see his dedication through the roughest of conditions, his perseverance to never give in, and his commitment of his life to treasure the most important things.

I just watched the documentary the other night by myself when it was late.

Bad combination for controlling emotions, right?

The last time I teared up this much was another father and son moment in a movie, but it was fictional. I will save face and not say what that movie was… and it was a loooooong time ago and late at night. Give me a break! Ok?

Anyways, back to the film at hand…

In Steve’s words:

“In January 2011, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) A disease. Terminal. Approaching 34 years of age, I do not fit the typical ALS criteria as I am ‘too’ young. An Outlier.”

What a lonely and devastating diagnosis…

So young, so ready to continue contributing to the world and the wonderful people within it…

Like I said, I had just turned 34.

I feel like my life is just starting to take off, I couldn’t imagine dealing with a blow this severe as well as he did.

He’s gone through 5 years of hell, but to him, he’s viewed it as just a different game to conquer.

If he can do so much with such limitations, I think we can all live at a higher level and do more, at least for the sake of our posterity.

“I believe that there is more in my future than in my past.”

  • Steve Gleason #37 (Saint Steven)

Wisdom; so deep and so profound.

He said this about a year into his ALS battle. Even though he was expecting a short time to live.

He’s now lived a lifetime in the past 5 years.

He has gone the distance and then some! He has inspired a football team, a city, a nation, and the world. He has created a not-for-profit that has raised awareness, funds, and even changed legislation. He is still living and fighting in Spokane, Washington.

No white flags! To the end…

For me and my family, the battle with ALS has a personal significance.

A few years ago my cousin’s husband (one of these shining examples of a true hero in my eyes) was diagnosed with ALS.

He deteriorated so fast, it was hard to believe. It was devastating to watch from afar, I couldn’t imagine how my cousin did it, how she coped with it everyday.

At that time they had just bought a house and none of the landscaping was done, and they had boys that needed space to get their energy out.

So I can’t remember who, but some good saint offered our families expertise and manpower to build a fence and deck and do some landscaping.

I remember everyone changed their schedules to get this done and set aside a day to finish it all. And we have a big family and extended family, which helps.

Some people drove a long distance to get there and then it poured rain all day long. Of course…

Though the sky was dark and the mud was thick, I think there was an equal level of cheer among all those that came to serve that day, knowing that losing shoes in the mud, being completely soaked and dirty and exhausted was nothing compared to what he was going through.

He inspired us as he fought that disease to do more than we normally would. I think knowing it was for only one day made it even easier to accomplish.

What if you had to do that every day? And knowing that the conditions were only going to get worse.

That’s why people that decide to fight until the end, knowing it will will only get harder, inspire me more than anything. Those that put their all into whatever they do, despite knowing failure is more than possible, are the true heroes.

Let your best stand for what it is. If it’s not sufficient it’s ok, you’ve done all you can”, said Gleason to his son.

And through this he has found a way to be the best father he could possibly be.

Gleason exclaims, “From a father to a son…Put yourself out there and risk to be seen and fail because that is the way you grow and find perspective.”

Why don’t we teach our kids this?

Is it because we will be there when it happens and it’ll be too painful to watch them fall on their face?

I believe that we need to teach our kids to do this, but often I lack the courage to actually let it happen.

We want to protect them from the big bad world, and everything in it.

We need to face the fears of life as he did with an authentic and vulnerable approach.

And one of those fears within us all is the fear of the end.

The fear that we will not be here forever.

The fear that one day, through no fault of our own, we will be forgotten; left off the tongues of our descendants generations past us.

In his rare moment of weakness, which was more than justified, he says,“I’m afraid to die…I fear the night.”

Everyone fears these things, but that did not stop him from battling back. This was his game to win, but there would be yards gained and yards lost.

I fear the night.

When the dews of heaven dry up

And when the light of day is compromised.

When the angels are drowned out,

And God seems to have withdrawn.

When the greatest of great are sunken,

And the best of bests are dismayed.

I fear the night.

When blindness prevails,

And deafness overtakes.

When the dumbing effects take control,

And I am left empty.

Though I fear the night,

The night has no claim over the hero’s soul.

– Known

Life will take on dark moments and often dark seasons, but we are meant to have these lows, and to fight through them because they make us stronger, better, more humble, more understanding, and we can then inspire others around us to do the same.

It breaks my heart to see people go through trials like ALS, it’s such an abrupt illness, sometimes people go within a year, but also because it’s heartbreaking when bad things happen to good people.

I know there is a reason for it, and my hat is off to a guy that has never sounded the retreat, and never raised the ‘white flag’.

The way he wanted to give every ounce of his being to others going through the same or similar trials, and to his son, makes me wonder why we even complain at all, about anything.

I guess I’m speaking more to myself.

I have 3 boys. I hope I can be the hero for them; the hero that stands when I want to quake.

“What dads do:

They pass on the best of themselves to their kids.”

  • Steve Gleason #37

If you have kids, stop and kiss them, and give them everything in those fleeting moments when they still let you hold them.

Those of you that don’t, you can be an example to others. Let’s live more honest and authentic lives, so others can find strength in us and us in them.

Be a hero. For those that will go after us and for all those on our path.

“From adversity, heros are born.”

  • Team Gleason

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