Tuesday, February 11, 2014

Holding pattern

Things seem the same.  Back in a routine.  The rollercoaster is coasting.  Luther's arms are the same:  he can do some stuff but not much stuff!  But they haven't gotten worse.  He's still walking, talking.

The speech therapist we saw at the VA told us it's great the ALS hasn't affected his throat/speech a lot.  It's a little - I notice it - but not a lot.  He thought this meant it gave Luther more time.

We've worked out a few glitches in our communication.  Geez - why is that so tough!?  I know my parents - married 53 years - talk about how they're still learning to communicate after all this time.  I guess I shouldn't be so surprised we haven't figured it out.  However, it feels critical to get it figured out.  If we don't communicate effectively now, there will be a point he literally won't be able to.  We need to understand each other really really well right now.

Not much is happening and everything's happening.  We're talking to a realtor about wheelchair accessible homes.  What to do with the home I have.  We're going through stuff, purging.  It feels a little morbid but also feels lighter, too, if that makes sense.  Luther has a bunch of meetings with the VA:  adaptive driving, wheelchair stuff, occupational therapy.

Life is full of dichotomies - opposites.  Light and dark.  Feeling content with a routine but underneath the surface, life is moving at lightning speed.  Love and sadness.  Wanting to hang on to every moment, every thing yet feeling the need to let go of not only the physical but the emotional, too.

I suppose life is always like this but we tend to not notice.  We skate through - or sometimes plod along - our daily routines.  Now, there's a spotlight on everything.  Another dichotomy!  It's good and it's bad.   I have a sense of urgency about things that makes me feel crazy at times and then I have a sense of apathy that makes me want to hide under the covers... stay still.  Maybe it's trying to keep time from marching ahead?

I'll enjoy the momentary sense of routine as long as the illness lets me.  

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