Monday, December 16, 2013


Home for the week, burning off vacation before the year end.  Nothing great planned like a trip to Vegas or Mexico.  Well, wait.  Great things planned like cleaning the  house!  Not the regular cleaning but doing the stuff I've been putting off forever.  And now, with the guy's ALS stuff going on, there's a sense of urgency to getting these things checked off the list.

He can't lift his arms beyond waist high.  3 months ago, he could lift chest high.  Now it's waist high.  Try it. Keep your elbows at your hips and try to lift your hands no higher than your waist.  Imagine getting dressed. Eating.  Reaching for jelly at the grocery store on the high shelf.  Brushing teeth.  It doesn't work out too well.

My vacation plan = rearranging to make his life easier.  I have tupperware and big bowls on a low shelf. Plates, bowls, glasses on high shelves.  Isn't that sort of the way we do it?   Those will be switched so he can reach the stuff we use most often.   Rearrange the closet and make his clothes lower.  I have to go to the hardware store and get key rings - those metal circles - and put them on his zippers.  Gripping zippers is tough and I think if he hooks his finger in one of the rings and pulls, life could be a little easier.

It's these little things we take for granted that make things so difficult.  Trying to think of new ways to make life less frustrating.


  1. My sister is Donna Byrne, my name is Lisa. I was married for 2 years when my husband got sick. 7 months in the hospital and I brought home a 6'3" quadrapelegic! Talk about thinking "what the fuck!" I feel your pain girlfriend big time! I know what doesn't kill you makes you stronger, but come the f.... on! I was already a complete and utter character. When is enough enough! Just letting you know there are others like you out here! I'm hanging in there by a very thin thread, and it's people like you that let me know I'm not alone. Pleease stay strong, and know I understand! In addition I cry bullshit to what doesn't kill you makes you stronger! All my thoughts are said to you with much compassion and love.

  2. Lisa - Thanks for your message. I'd like to find out more about your situation - I wonder if this comment reaches you? I'll check with Donna to see if it's ok to contact you. Somehow, it is a comfort to know there are others - regardless if you even know them - sharing your situation. I really appreciate that you took the time to comment.