I read this NYT piece, Are We Going to Let John Die? the other night and am only now just getting around to linking to it. It got me riled up, and like a successful Op-Ed piece should regardless of where we stand, it made me think about the issues involved.
From a research standpoint, health care reform remains on my mind these days. Right now, I’m looking at the civil rights movement, the early AIDS movement, and the disability movement and their influence on chronic illness. In terms of catalysts and goals for the chronic illness community, certainly health care reform is a significant issue. (Stay tuned, as I have a lot more to say about all of that…)
But when I move away from the books, journal articles, and interviews and look at daily life, and the recent content of this blog, I can see I’ve moved away from policy and reform a bit. This past spring and summer, it was hard not write about—from watching webinars that explored private versus public insurance to digesting the health care conversation with Bill Clinton to discussing the particular needs of patients with existing chronic illness, the subject was always fresh in my thoughts.
But lately, not so much. It’s still in the headlines, and I still read the articles. It’s still the topic of morning radio shows, and I still listen to NPR. Yet despite my cognizance of it, and its obvious importance to me as a patient, it hasn’t crept into my own titles and hasn’t been featured in my own writing.
The difference? Honestly, I think a lot of it has to do with the fact that this summer was relatively calm in terms of my health. I could manage the juggling act and stay on top of things with enough mental energy to engage in the dynamic conversation. Since September, I’ve spent 6-7 weeks acutely ill. Now, I am used to this cycle. If you’ve read this blog with any regularity, you’re probably used to it, too. It’s just the way things are when you’re blessed with dodgy lungs and a pathetic immune system and other medical complications right now.
On the positive side, I can say the infections haven’t been as bad or lingered quite as long as they normally would because of the very proactive, very aggressive preventive protocol I have been following since last March.
I’m a walking risk/benefits analysis, really.
While the cycle is all too familiar, what distinguishes it right now is that my workload has never been more intense. When infections sap my energy and consume my already scant hours of sleep, it hits me even harder. Or, to be more blunt, when I am sick it takes every ounce of energy and focus I have to just make it work, to get through the day and accomplish the tasks I need to in order to stay on track.
When I am sick, I fall off Twitter. I become a comments slacker on other blogs, my response time to e-mails takes a notable dive, and I beg off pretty much every commitment. I enter the Black Hole where the only things I can focus on are trying to get air and not falling behind in work. I read articles without comment, I skim headlines without linking.
In short, at times I am too busy being sick to contribute in any meaningful way to the conversation of the very health care reform that could define my patient experience.
Ironic? No, it’s inevitable. It’s life with chronic illness.
I get sucked into the Black Hole of silence even with a ton of local family and friend support, with an amazing husband, a relatively flexible career, a world-class hospital 10 minutes away, a healthy stubborn streak, and twenty-nine years of experience living with illness. Oh, and with very good health insurance.
Scary, when you consider the millions who cannot say the same.
(Also inevitable, rather than ironic: what keeping that wonderful health insurance has cost me so dearly in so many other ways, and how precarious it feels nonetheless.)
I guess I can tell I’m starting to improve. The ability to be riled up is always an encouraging sign.