There are so many beautiful people in my life, and I still do not reach out. It is glorious that others reach out to me, regardless of my silence.
Due to brain and body fatigue, I will jump to my partial-but-current update. I am beginning conversations with my doctors about getting a feeding tube. My newest diagnosis of gastroparesis is eating me for lunch. MS has now taken charge of my G.I. system. Descriptors must wait because typing with one hand is cumbersome and slow. Plus, it’s my left hand. My right hand’s atrophy showed itself during my last 2 terms at PSU in 2011. By the time I received my forever wheelchair, April 29, 2017, I was officially a, “claw hand.” Writing or typing became dictation. Only recently I realized typing with one hand is easier than correcting dictation snafus.
MS took a lot of liberties with my body, and I’m not that attached to having it all back because of the great and expansive opportunities to learn about myself. I still maintain that MS has been, and is, my great teacher. This is absolutely not a wish for anyone (ever, on the face of the earth) to get MS.
When I was training as an unpaid respite caregiver for Kaiser Hospice (a volunteer) in 2005 (or 2006), one workshop was given by a reverend in charge of Hopewell House in Beaverton, OR. He passed around a bowl with small strips of paper, each strip folded to hide its message. Each trainee was to choose one. Before passing the bowl around the reverend informed us that we were getting ready to ‘hear’ a diagnosis with the slip of folded paper, and after reading the diagnosis, we were to sit silently for 5 minutes, imagining ourselves, our lives, and all implications on our world going forward.
It was a very long five minutes, especially because I was shocked at how deeply I was feeling this pretend diagnosis. When I opened my slip of paper I thought, “‘HEART FAILURE’, I have all sorts of things I can do for that.” Yet the deep stirring of loss gripped me so fast that I was shaken with it. I nearly wept even knowing this was a sort of thought experiment.
When the eternal 5 minutes were over, the reverend said, “life doesn’t give us a brochure that allows us to choose our illnesses.” His wording was much more compelling poetic prose, and I was profoundly affected.
For now (explained in a future post), I’ll continue to say: this is me, writing.
P.S. My 2-minute plan actually takes close to 2 hours, but I knew that going in. And it is satisfying in a way that is thankfully indescribable.