Rage, Rage Against the Dying of the....
Last year around this time, I blogged about a friend of mine who discovered he had cancer. It looked catastrophic from the beginning, meaning from the beginning of the diagnosis, which pronounced latter-stage metastases around the lungs and spine. I have this fantasy that the diagnosis might have been somewhat different had Jason (not his real name), a freelance musician, conductor, and teacher, had health insurance and access to a regular doctor. He didn't. He managed to see a doctor in April 2009, but it wasn't until the fall that he got admitted to a hospital, County-USC, and that was because he showed up to the ER too debilitated to be legally denied entry. In other words, he had to be in crisis in order to trigger appropriate medical treatment, treatment that cost a lot and that he might not have required all at once had he had regular access to a doctor all along. When Jason got sick, or realized the extent of his sickness, we agreed that he was a poster boy for health-care reform, public option and all. At the time of the diagnosis, that debate was raging full force, and Jason was so riled up about the opposition, he was thinking of blogging about himself and his trials with the public health care system--the care of last resort for anyone without insurance, including talented and educated sorts like him.
For some shock value, he considered posting pictures of one large, surreal-looking tumor that extended several inches out from his chest; it looked for all the world like an infant monster from the movie "Aliens" leaping into being. Morbid, maybe, but Jason was full of energy then, indignant and determined to protest the broken system by exposing his own life and, most importantly, by getting well.
I talked to Jason last week. Over the last year, he's careened from despair (County USC dispensed with him fairly quickly and gave him little time to live) to deliverance (he got into clinical trials at City of Hope and responded positively to treatment). Both have run their course. At the close of this year he's at home in South Central where he lives, getting hospice care and focusing on staying comfortable.
He told me he's ready to go. He's written a memorial, and is putting the final touches on a living will. He doesn't sound depressed, just a bit disappointed that his life (he's about 50) is on a course he thought he wouldn't have to take for many years, if at all. But he says it's wonderful to wake up and not have to go anywhere or make an appointment; the complete restfulness is, for lack of a better word, healing. If only it were.
I am sorry about Jason's situation, angry at the thought that it could have turned out better. At the same time, I admire his resolve. I'm in awe of it. I struggle with the awkwardness of conversation, which in the context of all that Jason has been through is no struggle at all. I realized yesterday that all talking is like defying gravity, another way human beings stay upright and moving forward, even if the talk is nothing more than chit chat. But when someone succumbs to gravity or is in the process of succumbing to it, you can only watch or listen. Words--your words, mine--won't do.
This image was taken from the Anoto Group under the Creative Commons License.
