Find Someone To Love

Monday, 13 February 2006

As we approach the Hallmark-run, commercialized V-Day, I thought I'd post a more touching essay someone sent me from an ALS website....

ALWAYS LOVE SOMEONE ALWAYS

By Noah benShea

This is the first in a series of articles for The ALS Association by ALSA National Laureate Noah benShea.   Look for Noah benShea’s articles online at www.alsa.org and in upcoming editions of A Reason For Hope.

It is a few weeks ago. I am at my office working on this message.

I receive a phone call from a woman who says her name is Jan.

She tells me,  ”I read about your appointment as National Laureate of ALSA, and that you lost your father, and I lost my mother, and I hope I am not disturbing you but I just wanted to connect, needed to connect, and, and….”

And she runs out of words.

And I say to her, “You are not disturbing me; we are family; the anguish of ALS and the triumph of the human spirit has bound us together, forever, as family.”

And she cries.

And I listen.

And when I hang up, I can hear a hundred thousand voices still on the line, needing to be heard.

And if it is the silence between the notes that makes the music,

then this is what I heard in the screaming silence of people

whose lives have been touched – and muted - by ALS.

For people with ALS life is divided into two distinct time periods:

Before I learned I had ALS, and after.

Before I had ALS anything I had to deal with could be tough, but I could deal with it.

After I had ALS, there was nothing tougher I had to deal with.

This is first in a series of messages I will be writing for ALSA.

And it is only fitting that the first of these is directed to those at the very front of the front lines, those with ALS. Unfortunately, too often modern medicine – no matter its best intent - takes people and turns them in to patients. However long before you were a newly diagnosed, or a warrior well beyond being diagnosed, you were and are a person, and in these efforts I do not write to the disease, or to you on your continuum as patient, but to you as person, and to your fears, and your courage, and your struggles, and the quiet private heroism of your day to day living. Courage is not the absence of fears but how we wrestle with them. And bravery we discover is often fears that have said their prayers.

On the day you or someone you love is diagnosed with ALS the Cosmic Van and Storage Company pulls up and your previous self is picked up, and packed up, and moved into a separate world, into a time suddenly and completely separate from a memory of a life a lifetime ago where no matter the trapeze act of one’s life there was always and still a safety net. My previous self was packed up crated on a hot summer day in 1985. My previous self left the room on the same day I entered a small, green room with my mother, and my father, and a sad eyed doctor, and heard my father diagnosed with ALS.

My previous self was of a mind that my big, strong, supportive, loved to laugh father was mortal but impervious, and my mother whose strength of character was tidal could survive any event intact, and anything that life could throw at me I could shield with a turn of a phrase, a strong cup of coffee, and the right attitude.

What my previous self was about to discover was that if you want to give God a good laugh, tell Him or Her your plans. That life is what happens while you’re making plans.

There’s a story told of two friends who share a life long love of baseball. The friends promise each other that who ever dies first will come back and tell the other if there’s baseball in heaven. And one day, Phil passes away. A year later Mort is walking down the street and sees Phil. “Oh my gosh Phil, I miss you.”

“And I miss you too,” says his friend. 

“But now that you’re here I need to know, is there baseball in heaven?”

“Well,” says Phil, “I’ve got some good news and bad news for you. The good news is that there’s baseball in heaven. The bad news is that you’re pitching tomorrow.”

In 1985, in a hot, small, green room, my father got the news he was pitching tomorrow. Even if tomorrow was five years later, even if he was in denial, and anger, and fear, even if my brothers or I would have taken our father’s place on the mound. Even if we made it clear to the Big Team in the Sky that they had picked the wrong guy. 

Every guy we soon came to learn was the wrong guy. Every woman we soon came to learn was the wrong woman.

Few of us have a calling in life for what we are sometimes called on to do - or comes knocking. And still the call comes. Destiny we discover doesn’t need a forwarding address. Destiny makes house-calls.

What makes us all blood brothers and sisters is that we all bleed. When we feel we can’t carry on another step, when we feel ourselves buckle under loads that burden and bend us, when we struggle with feeling alone and unseen, this is not our isolation, though we may feel isolated. Rather it is our shared humanity and our shared courage of everyday living, and herein our shared heroism.

My father didn’t yearn to be a hero. He would have been just as happy to live out his life hugging his wife, cradling his grandkids, and eating his favorite giant guacamole dripping burrito in complete anonymity. But things didn’t work out that way, and the tough lesson to swallow was that when things don't work out the way we want life isn't arguing with us - only with our plans.

You and I know what ALS is, and what it does. It doesn’t matter if we know this in poly-syllabic statistical scientific terms. It does matter that we know it up close and personal, too up close and too personal. And it does matter that I know it like you know it, and I wish I didn’t know it just the way you wished you didn’t know it.

Like you, I have learned that tears falling long enough can scar rocks. And I’ve seen the scars of ALS’s graffiti. And I’ve read the scarred tears on a wall of souls. And this is what the sign says to me, and this is what I have deciphered as the lesson that perhaps, perhaps will get any of us through the night even at high noon: Put your faith not your fears in charge.

Imagine if you will for a moment that this life is a wagon that we have been assigned to pull. And inside of each of us are horses of fears and faith that we can call on to pull this wagon. But all of us have many more horses of fear than faith, and if we put any of our multiple fears at the lead of the line of horses, our fears will not take the lead, our fears will be afraid to go anywhere, and inspire only fear in the rest of our energies that are in harness. But if we take even a single horse of faith and put it at the front, our faith will take the leap, and our fears will follow, and indeed our fears will fuel our faith, if we dare to put our faith and not our fears in charge.  Put your faith not your fears in charge.

Several years ago, in Tanzania, a school librarian found herself as the sole tourist on a safari. Sleeping in her tent one night, she was awakened by the earthquake-like trumpeting of a herd of elephants heading her way. Fearing for her life, and completely without experience in coping with this fear, the woman reached for her diary. With all of life’s determination she furiously scribbled the only line that would later be readable: “Real women do not get trampled by elephants!”

In all of our lives there are elephants bearing down on us. Or it feels that way.

Helen Keller wrote, “Security is mostly superstition.” We are often separated from our fears only by tents of superstition we have pitched in the night. What transforms some of us into Sheena, Queen of the Jungle, is not the form-fitting leopard skin but the form of our character. Character is seldom formed overnight but often in the soul’s dark night. Greatness is rarely achieved when things are great. Things don’t have to be great for us to be great. An army of sheep led by a lion will defeat an army of lions led by a sheep. Put your faith not your fears in charge.

To any of you who are reading or hearing these words and have ALS please know that I do not presume to know your problems from your perspective.  I cannot presume to know your pain nor presume to know your solution.

I can however presume to speak to the courage that it takes for any of us, all of us, to deal with the day to day.

All of us are alone marching together. The shared humanity of our fears, the anguish, the isolation, the day in day out struggle for those with ALS, and those who love them, and those work in the cause are common to all of us. The experience of fear however is always individuated. And this aloneness is common to all of us who have been blessed with life but only given a mortal’s time line and never know when our time is up. Yes there is baseball in heaven, but one of us, some one of us, is always pitching tomorrow. My friends, we are here alone together.

Five years after my father’s previous self was crated up and packed away, my father took his leave. But he has not left. He has passed, but he is not gone. The veil between the worlds I have discovered is porous. Those who have left have not left us. They have left us instead to tell their tale, left us to fight the fight, left us to rage, rage against the dying of the light.

To all of you at the front of the front lines, here is a promise. By your lives we will find cause to live, and by our living make a difference, as you did by your daring to live, and we will never forget that, ever, and we hold your truth close, and in doing so hold you close, forever.

Just before my father passed, I finished writing a book entitled Jacob the Baker. Here is a story from that book that I wrote to help me and my father through the night. May it be a source of strength for you, as you, in your struggle, are a source of strength to so many.

“Jacob,” asked Mr. Gold whose days dangled by a thread, “where do you find the strength to carry on in life?”

“Life is often heavy only because we attempt to carry it,” said Jacob.

“But I do find strength in the ashes.”

“In the ashes?” asked Mr. Gold.

“Yes,” said Jacob with a confirmation that seemed to have traveled a great distance.

“You see, Mr. Gold, each of us is alone. Each of us is in the great darkness of our ignorance.

And each of us is on a journey.

“In the process of our journey, we must bend to build a fire for light, and warmth, and food.

“But when our fingers tear at the ground, hoping to find the coals of another’s fire, what we often find are the ashes.

“And in these ashes, which will not give us light or warmth, there may be sadness, but there is also testimony.

“Because these ashes tell us that somebody else has been in the night, somebody else has bent to build a fire, and somebody else has carried on.

“And that can be enough sometimes, that can be enough.”

All of us are on a journey.

All of us are trying to find our way.

On that journey, people with ALS have a message for all of us:
Always Love Someone.
And a reminder to love themselves.
Perhaps one day we’ll all come to understand what ALSA really stands for:
Always Love Someone Always.
Noah benShea Copyright 2005 All Rights Reserved

For more information about Noah benShea, go to http://www.alsa.org/news/article.cfm?id=609.

http://www.alsa.org/news/article.cfm?print=1&id=653
©2006 The ALS Association. All rights reserved.