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Living With Joy

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I just finished reading one of the most amazingly beautiful books I have ever had the fortune to read.

Breathtakingly, soul-strentheningly beautiful.

I read it cover to cover in a day.

Yet, it will stay with me for quite sometime.

Buy it.  Today.  Read it.  Now.

Until I Say Goodbye: My Year of Living With Joy, by Susan Spencer-Wendel, chronicles her life after receiving a diagnosis of ALS (Lou Gehrig’s Disease) at the age of 44.  It is not a book of sadness, or pity, or anger.  It is a book of laughter and love and JOY.  In the book, Susan tells of spending a year making joyful memories for and with her loved ones.  With her husband, her best-friend since childhood, her sister, her children.  Separately and together.  Even as her muscles are failing more and more rapidly, she desires to infuse her life – her very spirit – with JOY.

Susan and I grew up in the same hometown (where she lives about a mile and a half from my brother).  She is my age.  We share the same name (I wonder if she wasn’t really in love with the name growing up as I wasn’t – I have never felt like a SUSAN).  We both have three children – one with Asperger’s (her last, my first).  Both two boys and a girl (hers in the opposite order as mine).  I went to high-school with her life-long best friend.  As I read the book, I could picture the landscape of South Florida.  I breathed it with every rich detail.  There where times when I would laugh out loud – back up – read it again – only to laugh even harder.

And there were times when I had to hold back the sobs.

As I was reading the book, I would occasionally stop and ask myself if I would still love it as much if I didn’t feel  a bit of a personal (albeit vicarious) connection.

And each time the answer was a resounding, “YES!”  And not just for the humorous well-written prose, but for the lesson she imparts.

As we are facing challenges in our lives, we have several choices.  We can fight it tooth and nail.  We can fall in to a deep depression.  Or we can accept it for what it – for what it will be  – and choose to be JOYFUL.

Not happy.


There is a big difference between the two words.  They are not synonymous.

We may not be HAPPY to be in the midst of the challenge.  But, in accepting it – or as Susan puts it, finding your Zen, we can open our minds and hearts to finding JOY in every situation.

It is such a hard choice.  And certainly, making the choice to be joyful is not the path of least resistance.  It is ever so much easier to feel anger.  Or to allow ourselves to slip into the caverns of despair.  Making the choice for acceptance is HARD.  You have to work at it.  And as humans, we don’t really like things we have to work at.

Oh, I am sure that there were times when Susan felt genuinely pissed off at her impending fate.  Yet, she made the conscious decision to accept that what will be will be.  There was nothing she could do to stop it.  There was nothing she could do to even slow it.  It was happening and there was absolutely nothing she could do to avoid it.  After all, isn’t life too short (and in her case, quite literally) to spend it pissed off or sad?

Such a very good question.

And one that makes me think that if she has been able to face her fate with such dignity and grace – surely I can learn to do the same thing.

Surely we all can.