I asked Dan and David
to do a guest blog
here it is:
May 18, 2017
Mark asked David (Chertok) and me (Dan Jaffe) to blog about him.
Here is a visitors-from-afar perspective. I know this is too long, but I broke it up into categories (and David added his own to mine for a unified blog, so "I" is "we", well at least sometimes):
I have a colleague who says "courage" as a way to end every conversation. It is a greeting, like a goodbye--see you later. Now, Courage, real Courage, flows from Mark's every breath. From the beginning of a conversation to its end. From each movement; from each swallow of a bite or drink.
Where Have We Been?
Here is what we have reminisced about: Carman 12. We all grew up together. Mark remembers smoking the shit out of a joint on Carman 12 with David and me. We both deny the memory, for professional reasons. I recall Mark teaching me second semester calculus on the eve of the final exam, because until then I thought I did not really need to study. Such patience as I crammed my way through. The Carman 12 cast of characters, many still in touch—even if 1 degree removed. Mark's Spring Semester Junior year in Israel. He and David travelled to Turkey and Greece. Mark remembers that David met some Midnight Express heroin dealer-like person in Istanbul and brought him to meet Mark and Shelley Levine; David of course remembers no such thing.
More recently, we all reconnected at reunion 25. I visited in Big Sky with my two sons a few years ago. Howie has no recollection but he showed us the mountain. Mark and Jackie and their Howie visited with David and Hannush in Tel Aviv a year and a half ago, and Mark and Micah a few years before. They claim David knows all the best eateries.
How Is Mark?
He is still Mark. He is the same Mark. He still makes me laugh. He still has a glimmer in his eye. He still has a beautiful smile. He still has a crazy-sweet disposition. He still can make great conversation. He still laughs. He still has an incredible appreciation, understanding and acceptance of human folly. He still loves, a lot.
How is Mark's ALS?
It sucks worse than I imagined. I had never known a person with ALS. Mark cannot control his muscles from the neck down. His mind and his senses are completely intact. The good news is that he can think, smell, taste, see (like an eagle) and feel (literally everything, clothing wrinkles included) just fine. He enjoys food and we all enjoyed a great bottle of Willamette Valley Pinot last night.
Mark's inner organs seem to work pretty well (lungs need a little help now and again). The cruel part is that even though Mark cannot control his limbs or torso, he senses pain whenever something is painful, just like the rest of us. Imagine how stiff you would get being unable to move. He feels stiffness, pain, discomfort. Oh, and he sleeps poorly, when he sleeps. Sucks. These symptoms (pain, stiffness, can't scratch an itch, need attendants for routine needs) cause incredible frustration, torture in some ways. Mark weathers it very well. Despite the most frustrating of circumstances imaginable, he always knows and shows his love and appreciation.
How is Mark's Spirit?
Remarkable. He takes incredible comfort from the love of/from his family and friends. He has an absolutely astonishing group of caregivers and volunteers from his Big Sky community. People who love him enough to feed him, help him with the bathroom, cook, clean, foot massage him asleep. People who have taken the time to learn how to work the incredibly complicated chair Mark is stuck in. And if Mark's Big Sky community is the periphery of support, Jackie is the Core (and Howie is in there too). Courage and strength. Courage and strength.
With empathy, and an outpouring of love, Dan and David.