Hello, my name is Noah benShea, and I am the National Laureate for
The ALS Association. I am honored to be involved in this historic effort to bring
greater awareness to Lou Gehrig's Disease and the need to fund critical
research to bring new therapies and hopefully a cure to those with ALS. Like
any other kid who grew up around baseball, I never dreamt my life would
be entwined with the life of Lou Gehrig. But then, if ALS teaches us anything,
it is that life is not a dream.
In 1990, I lost my father to ALS. To this day I still have more
anger than peace, more questions than answers. Nevertheless, over time I
have learned a few things about coping with ALS even though most of the
education came from feeling beat up, watching my mother get pummeled by events,
and simply witnessing my dad's daily honored courage in the face of fear and
fate. The few words you are about to read aren't intended to be the final word
on the question at hand but are the best I can do in trying to offer you a few
words, when the truth is that words generally fail in life when you need them
most. And it is with the humility of knowing this that I invite you to read on
because I believe my heart is in the right place - right next to you in the
corner where you feel cornered. At least that is where I have attempted to park
my best intentions.
How do I, tell my family, particularly my children, that I've got
ALS?
It always seems to me that the toughest place to begin with any of
the tough issues in life is with ourselves. So perhaps before we get around to
trying to tell anyone else what has got to be devastating news, the place to
begin is by having a conversation with ourselves. Before we think of breaking
the news to anyone else, I think it serves us to make sure we are being
straight with ourselves. The truth starts at home.
This doesn't mean we don't say anything until we are past anger,
denial or the like, but it does mean we are being straight with ourselves about
what we're feeling facing this monster.
From being honest with ourselves, we can begin to find our way
with others. If we can be self-loving in the face of the facts, then we have
a much better chance of being other-loving when we share the facts with others.
And while we can't presume how others will take the news you share
with them, neither can we presume where the news is going to take you - and
living with this uncertainty is certainly the first fact that needs a face to
face. Suddenly, for both patient and family, what we have to face is that all
the previous presumptions we had about life were just that, and for most of us
this is the hard news of the human condition as much as the diagnosis.
In no small way, facing ALS forces us to face what it means to be
a vulnerable human being. And the usual tactical avoidances of having plans,
being busy or being young are all washed away leaving us nose to nose with the
dragon whether that dragon is ALS or simply facing the fact we're all growing
older and soon will get yanked from the stage of our day to day dramas,
comedies and triumphs.
Still, at the end of the day, what do you say to your family and
your children? Tell them that you love them. And you need their love. And when
things get tough for them it will be tougher yet for you. And what will hold it
all together is the knowledge that though we will be pulled apart this
experience can also pull us together.
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Posted by Noah ben Shea, National Laureate, The ALS Association
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