I know that many of us feel pressurized at this time of year, and act like folks under pressure, but I tend to think that the end of year holiday season tends to bring out the best in people. What’s also true is that while many of us anticipate the best of times with family and friends, many of us day in and day out need to be heroic just to get through the day to day.

And while it’s impossible to honor all those who are heroic, I’d like to share with you a couple of very private and very real stories about heroism.

The back story is this. My father died of ALS, Lou Gherig’s disease, and a few years back, I was asked to serve as the National Laureate for the ALS Association. In that role, and out of my own experience, I have repeatedly born witness to what matters most in life and the day to day heroism of daily living.

In every one’s life there comes a time when something happens that so impacts your life you can’t help but discover what really matters most. Certainly anyone impacted by ALS knows this reality because after the diagnosis of ALS, the day to day suddenly disappears and each day matters more - more than you dare to imagine.

I thought the subject of What Matters Most was particularly relevant for emotional survival in the face of ALS because even when staring at devastation people can, with day to day heroism, rise to higher levels. And I wanted to honor and share those private triumphs. To do less would diminish the human spirit and let the illness triumph.

Story One: PURE GOLD

When we are young we are inclined to think that success in life is measured by how much you can grab. As we get older, and perhaps wiser, we come to understand that real success life is realizing what you don’t need, what is unessential, and what matters most.

In some way this is similar to the smelting of gold. Heavy ore is crushed under pressure and what is not necessary is taken away. What remains is what is truly valuable, what matters most.

This story was sent to me by Matthew J. It made me cry. It also reminded me of the real power of love and that the drama of ALS can also be the heart’s triumph.

“My wife and best friend Adelle and I have been married for 23 years.  Adelle was diagnosed with ALS in July 2002.  

“Now almost everything I married Adelle for has been taken away. Before she was diagnosed Adelle was the kindest, most wonderful person I've ever known.  Now - she is more so . . .  

“I loved being with her everyday - we were never apart – now she is a permanent resident in Hospice.
I loved talking with her – now her voice is silenced.
I loved walking with her – now she's totally paralyzed.
I loved being intimate with her – now we've not been together in over four years.
I loved her wonderful cooking – now frozen dinners are the norm.
We had a wonderful home – now it is lost - mortgaged to pay for ALS expenses.

“BUT WHAT MATTERS MOST  ? ? ?
Our LOVE for each other is stronger than ever.
“Our faithfulness to one another is stronger than ever.
We have a wonderful son (17 years old).  He's wiser than ever.  He's more independent than ever.
We appreciate the non-material things more (things that cannot be bought).
I value the limited time I have left with Adelle.  Time with her is precious.
           She's prettier than ever
           She's sweeter than ever
           She's kinder than ever   

         “ALS has given us a clearer / crisper vision of WHAT MATTERS MOST in life.   ALS has tested us in ways most people never experience.  I feel honored to be married to such a wonderful woman - this test has made her a better person – and it has tested me as a husband, father and man.  I was in heavy combat during Vietnam - and although that was absolutely terrible - it ended in 12 months.   ALS isn't that merciful - it scrapes, tears and grinds a family - right to the core - right to our marrow.   But we are emerging - as refined gold – pure gold - without dross.”

A lot of us spend our lifetime in the pursuit of fool’s gold. This is not because we are fools but because we spend our lives pursuing what every one else tells us and advertising sells us, as what matters most.

For some of us it is only an earthshaking event, good or bad, that can cause us to wake up and smell the truth. For some of us even waking up to the nightmare of ALS can have the transforming power to see what pure gold is.

At the end of his letter to me, Matthew wrote:

“Adelle’s sweet spirit remains - sweetened more by this  terrible trial called ALS.  She remains my best friend - and my hero.  Thanks for listening . . ..”

Thank you Matthew and Adelle. Thank you for your love and by your love your reminder. You thank us for listening. And in some way that is my prayer. I pray that all who are reading this are listening and remembering what matters most.

STORY TWO: THE CURE

When I was a child I was plagued by nightmares. On reflection these were probably not any worse than most kids have, but I was the first born, and my mom was super loving, and so she dragged me to the pediatrician for a cure.

I don’t remember what he asked me, or if he asked me anything about what might be causing my fearful nights, but he sure had the cure. He prescribed these giant capsules that I was to take before going to bed. The prospect of having to swallow the monster pills was greater than any monster under my pillow, and I soon assured my mother that the dreams had stopped.

Sometimes struggling to deal with something we never would have signed up for serves us in ways we never would have requested. And sometimes takes us to a better place even if we have to go through hell to get there.

Often what matters most doesn’t just knock on our door, it kicks our door down, stomps into our life, and screams at us to pay attention. Surely such a visitor is ALS. ALS will get any of us to sit up and pay attention and not only think about what matters most but what matter’s least and what we may have been foolishly paying for with our lives.

This story was sent to me by Debbie E. I can only imagine it must have taken a great deal of courage for her to share her honesty and at the same time her honesty was her cure. Alcoholism is one of the biggest bear traps in life’s jungle. Anyone who doesn’t think so is all the more vulnerable. Debbie’s discovered her cure in discovering what matters most.

“Thank you for asking me to write something. It would be an honor.  Here goes: The day was December 5th, 1989.  I was actually living with my Dad and Uncle because my life had been so impacted by alcoholism that I had no place else to go. They generously took me in. Then, while we were sitting at dinner, my Dad announced that he had been to the doctor that day and was diagnosed with Lou Gherig's Disease.  We cried over our cocktails, and it was at that moment that I knew I should never take another drink. What mattered most was that I got to spend time with my Dad during his last year, until we met again. 

“I thank God for that moment in time, because He opened my eyes to see that life was not about drinking, but it was about being there for others.  As a family we went to support groups together, we laughed, we cried and we prayed.  After God took my Dad home, I knew I was supposed to return to school to become a Therapist. I never took another drink after that day and I know that my Dad is watching and smiling -- I know he's proud.”

When we are called into court and asked to give witness, we are told to hold up our hand and swear we will tell the truth, the whole truth, and nothing but the truth. All personal transformation begins with self-witnessing. But that means we must in our life, and in our life’s struggles with our biggest demons be prepared to tell the truth, the whole truth, and nothing but the truth.

Debbie’s grand inquisitor in the court of life was ALS. And her cure, her triumph, wasn’t only her recovery from alcoholism, but sobriety in the time remaining with her father, and a reminder of what matters most for the whole rest of her life. Debbie’s victory on top of triumph was that she went on to become a therapist and an ally to others.

ALS didn’t give Debbie back her life. Debbie did that. What ALS did was give her and can give any of us is the opportunity to rise to our highest level at times when we feel the lowest.

It was General Patton who said, “Success is how high you bounce after you’ve hit bottom.” Surely, somewhere in that bounce, somewhere along the way, who among us will not have an opportunity to learn what matters most. Here’s to all of us who are trying. And trying again. You are not alone. Remember that!

If you would like to write to Noah or send him your story about What Matters Most please do so to: Noah@NoahbenShea.com