Wednesday, May 17, 2017


I am enjoying the Spring. Things look different this Spring than last. Though I was home last Spring as well, most of my "free" time was spent on the toilet, or figuring out when I could eat, in order to then have the time to be sick, and then hopefully be able to go out. By this time last Spring my UC was in full flare, I was wearing my mofo/brace Phoebe, and I still didn't know I had ALS. I am pretty sure my colectomy had already been scheduled.
Fast forward to this Spring. I no longer have a colon, but I have no pain. I still worry about using the toilet but only because I can't get on and off myself, and all toilets are NOT created equal. Phoebe has been replaced by a hot pink power wheelchair who still remains to be unnamed. I am anticipating the scheduling of a feeding tube insertion. And the big one - now I have ALS.
I often think about how each experience I have is beautiful in its own way if only I didn't have ALS. Today is a perfect example. Kim (my home health aide and friend) came over this morning. We prepared one of my family's favorite meals (I supervised)),  she shaved my legs, we talked and laughed, she made me lunch, and I ate while she folded clean towels. What a great morning if only I didn''t have ALS.  Or when I get this gift of free time to write and think and meditate. All of that would never be if I didn't have ALS. And as I reread this paragraph I just wrote I realize that I am not sure if I am angry or thankful for the ALS. What is my perspective? I know that ALS has caused me to love more and harder, never take things for granted, and stop sweating the small stuff. I have met some amazing people because of ALS. So, in some twisted and bizzare way am I happy I am living with ALS? No.  Definitely not. But I guess perspective is not black or white.
Now that the weather is a bit more cooperative, I am often sitting my backyard on the deck. I tilt my wheelchair back to be able to see the very tops of the trees.  The tall, strong limbs touching the blue sky. The breeze just strong enough to make the leaves move and turn so you can see multi shades of green. It is peaceful and majestic. If my wheelchair had been in its regular seated position I would never have seen such beauty.
Last night I had the privilege of attending the Lawrence High School's Spring instrumental concert.  Greeting friends after the show, sitting in my wheelchair in the regularly seated position is awkward and it hurts my neck. I am really only seeing their midsection and it is not conducive to hugging.So I tilted my wheelchair back and changed my perspective. I got to see smiles instead of belly buttons, my neck didn't hurt, and the hugs were greatt!


  1. Maybe you should name the hot pink power wheelchair the Wonder Wagon! Your words always give me pause to take a breath.

  2. Powerful words and a great reminder that we should all be thankful and not sweat the small stuff. Thanks for sharing, Deb.