I read a striking story about a doctor and triple amputee named B.J. Miller who brilliantly converted his personal tragedy into a gifted calling in the field of palliative care.1 I’d don’t think of palliative care as something for us and would like to stay as far away from it as possible, but as I read the article many philosophies and values held by this dying young man struck me as being similar to our own. For example, the story highlighted a 26-year old named Randy Sloan who was dying from mesothelioma and went to Dr. Miller for end-of-live support.
“He would say to me, ‘Mom, all I want is one ordinary day.’ ” He was sick of being sick — just like he’d been saying. He wanted to go back to living, as best he could.”– Randy Sloan’s Mom
Living with leukemia sucks because, until Ewan is cured and 5 years out from the start of his remission, he is considered “sick”. We know there are still cancer cells in his body; they don’t actively aggravated him but they are a looming threat. Therefore, oral, IV, and IT chemo is constantly being prescribed. Ewan is sick from treatment. Ewan looks sick – pale in color, sallow in eyes, bald, with downy, frayed fluff dotting his scalp. But, at seven years of age, he doesn’t give it much thought. He thinks of things like playing games, watching movies, being with friends, doing what his siblings are doing. There are many days when he has less energy and feels nauseous. I can see it on his face that he is sick of being sick and just wants to play Mancala or Uno or go to school and do the things that other seven year olds are doing.
In the same way that Dr. Miller sees to it that his patients get to play themselves out, I own the responsibility for helping Ewan play himself out.
My job is to help him live relatively ordinary, relatively satisfying present moments that are strung together. I just cancelled a pre-admit appointment for Ewan so that he could keep his 10 minute piano lesson.– Ewan Lill’s Mom
1. Mooallem, Jon, “One Man’s Quest to Change the Way We Die” The New York Times Magazine. Jan. 3, 2017