– The word is getting out that you are planning a book on your experiences working in the field of brain injury.
– Almost. A book about living with a brain injury and working in the field.
– Where does it stand right now?
– Planning it in my head. It’s a narrative of the experience. What I’ve encountered, seen, experienced. People I’ve met, worked with, the survivors, their families, and the healthcare system itself is a character.
– Is it a tell all book?
– You mean like a gotcha piece?
– No. It’s a tell the truth book. When it comes to programs that provide services to those of us with brain injuries living in the community, it’s essentially a new field. So there’s a real mix on the results front as everyone is on a learning curve.
– So mistakes get made?
– Sure, but that’s part of life and not necessarily a bad thing at all. As long as the motivations behind people’s actions and choices are in a healthy place, mistakes are growing pains. When the motivations turn poisonous, then the process becomes diseased, and that’s pretty tragic.
– You seen that?
– Sure. It’s like any field, really. Some folks in it are amazing, some aren’t. Some are honest and honorable, some aren’t. What the field is missing, at least in my state, is real thorough oversight. Too often, those that are in the field for the wrong reasons are not held accountable. There are people in the Department of Health in my state for example that I like and admire and then there are others I don’t. I know one woman, the wife of a survivor of brain injury, who has filed complaints on her husband’s behalf and the DOH looks into it, or says it looks into it, and then tells her the complaint was unfounded. The curious thing is the DOH never talks to her or her husband during the investigation. That’s kind of like a mechanic signing off on the health of your car without ever looking at the engine.
– The book will focus on what you’ve encountered in the field as well?
– Absolutely. There have been times I’ve had to educate people I work with about the impact my brain injury has on my life. More often than not, they were great, got it, and translated the knowledge into their work. Other times, they’d nod, say yeah, okay, and then march on as if I’d said nothing.
– Sounds frustrating.
– In a way. But I think more than anything I was grateful to be alive to be in the position to try to help people understand, not just my injury, but the injuries others live with as well.
– What’s your next step in the book process?
– I’m working out a questionnaire for bunch of people, about demographics. One of the amazing things about those in the field of brain injury is their diverse backgrounds. People from different fields. Different educational backgrounds, different economic backgrounds, and more. While it’s not the main thrust of the book, its material I want to lace into the book. I mean look at me, I’m a high school drop out with a GED and a few college credits, and a former New York City cabby. So you have a real rainbow of folks.
– So the questionnaire is –
– Just to get peoples demographics collected so when I interview them I can focus on their experience and not waste their time with things like what types of jobs have you worked at or where did you go to school or where’d you grow up. When I meet with people to interview them I want to focus on the content of their experience in the field.
– And survivors?
– I will absolutely be talking with survivors and their families, absolutely, I’ll be sending the same questionnaires to them for the same reason; survivors, like those in the field come from every background you can imagine. Same with the advocates.
– It’s as if brain injury in a way includes all of us.
– Now you’re getting it.