Tuesday, December 20, 2016


The fatigue hits hard and suddenly.  It doesn't happen every day but it is definitely happening more often than it was, even only a week or so ago. I feel the fatigue in my legs, my arms, my jaw, my core, and my hands. My hands. My right hand is starting to curl over in a way that makes it rigid. Maybe rigid is not the right word. Like it is difficult to straighten out. Especially my pointer finger. Typing has become a bit more difficult, I am gripping the joystick on the loaner power wheelchair in a strange way, and writing has become a lengthy and laborious act. I was wiping off the kitchen table and counter today and I had a lot of trouble making my hand flat under the paper towel. So I ended up wiping with a fist.
Sarah is home now and we are falling into the routine of having five of us in the house instead of four. It is interesting to see how we adjust to some things quickly, like no time has passed, but other things need a bit more time. We have a lot more equipment in the house than when she was home for Thanksgiving, so its like having seven or eight people living here.  It was really nice to sit at the dinner table tonight and have the five of us banter, and laugh, and reconnect.
I have been writing close to three hours a day. It is like I have this motor inside of me that will eventually run out of gas. I know I will get to a point where I won't be able to type with my hands, and I might not be able to use voice recognition, so I want to get it all out. I feel compelled to run the motor. And when I am not running the motor I am thinking about how I will run the motor.  Some of what I am writing is quite difficult and very personal, and I spend some of my writing time crying to myself.  It is exhausting. The dogs don't really know what to make of the wailing sounds that come out of me as I sit at the computer for hours on end. Sometimes they mosey on over and just sit close. It is good to have dogs. Please don't feel bad for me about the crying. It kind of feels good. Cathartic. I know I have said that before.

I have been thinking about the concept of HOPE. I recently heard some of an interview Oprah did with Michelle Obama. She was discussing the concept of hope, and how we as human beings need to have hope. "What else do you have if you don't have hope? What do you give your kids if you don't have hope?"
Hope has become a much more obscure concept for me now that I am a PALS. Can you feel hopeful when there is no hope? How do you have hope when there is no cure? How do you teach your children to be hopeful when you struggle to be hopeful yourself?  Yes, these are the questions I think about as I lay awake at night. I have come to some conclusions.
I have hope that there will one day be a cure for ALS.
I have hope in the doctors and scientists and fundraisers that are doing all the good work to get to the cure. I have hope that my children will be instrumental in keeping kindness and generosity and compassion alive in our society. I have hope in the good people in this world to overcome the evil. I have hope that the kindness I put out into the universe will touch people, and they in turn will pass it on.
I hope to continue to find hope.

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