Saturday, November 1, 2014

Some things you don't want to see...

Do you want to see your future?   Good, bad, ugly??

This is what going to a support group is like.  Or watching or reading something about ALS.   It's hard to hear or see what's in store.  It's hard to hear how tired or desperate or angry people are. Sometimes it's even hard to hear or see people being awesome!  Hard in a different, sort of raw and emotional way.

We decided not to see the ALS movie "You're Not You" for a couple reasons:

I don't want to watch a movie star depict the life we lead.  Neither does Luther.  I'm glad for the awareness, for sure (although I don't think the movie is too popular...).   But it's never really the life we lead - that would never make a great movie.  I'm sitting here in my long undies and a sweatshirt, Luther's downstairs watching college football.  We don't have a kooky home health care worker leading him on crazy adventures.

There are enough real life documentaries to watch, to support, to spend our time opening our hearts to this struggle:

Patrick O'Brien's had ALS for 10 years.  10 years!!!  He's been filming his "journey"  (I hate that word - like it's some adventure down the yellow brick road) - he's been filming his disease.  The documentary is coming out later this year.

Hope for Steve.  I follow this couple on Facebook.   Her attitude toward being a caregiver changed my perception of the choices I make in the face of living with ALS.

This is the story of Tempt One - a 30 year old graffiti artist.  The first link is an recap of the amazing technology that's come out of his disease called the Eye Writer.  The second link is the documentary.

We'll continue to go to support groups.  I go to therapy - which, at times, is like going to the gym.  I never want to go but I'm glad I did once it's over.  I get tired of facing things, of talking about ALS. But facing those fears or anger is good.  It lets it out and gives us space and time for the good stuff.

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