It’s time to transfer to my powerchair, I wake, I’m helped up and in I go. From the moment my tush hits the seat I feel empowered, ready to go wherever my wrist dictates.
First stop, the kitchen, for my morning dose of coffee!
Sitting on the kitchen island is a tall cup of the miracle nectar, piping hot, bent straw in place. Next, raise my chair to drinking height, sip, sip… ahh.
S²D², Ground Hog Day, Rinse and Repeat.
The days blend together after a while, this includes the feeling that I’m witnessing life just whizz by at warp speed. I sit in the center of my home and I see my kids and wife going a mile a minute, in and out, buzzing past me.
Hi dad, by dad, as I sit.
I move about, never catching up, just when I do, they bounce in another direction. Yet as the blur of their movement leaves a visible trail in the light spectrum, like specter’s moving through time. I can’t catch them so I sit patiently, until they orbit me and notice… me.
It’s not them that has sped up, it’s me that has slowed. ALS has forced me to now experience life from a new vantage point, a much slower vantage point.
Patience is the mechanism by which we find the right pace to meet each other in this dichotomous universe we find ourselves in.
Time in a wheelchair, it’s a paradox.
“If I could put time in a wheelchair, the first thing that I’d like to do…is to slow, go so slow, like a Presence of divinity, just to know it with you…”
Juan, you fill my heart. While I struggle to sit still for 30 minutes, you are constrained to do little else. I’ll not say it is a blessing, for only those who experience it can know the complex intricacies…
You are a wonderful facilitator of learning to tease the blessing from EVERY situation. My heart is with you.