Author and TBI case manager Michael Paul Mason talks about his eclectic experience working with people who have sustained a brain injury.
[♫ jazzy piano music] [The Book Studio] Welcome to The Book Studio. I'm your host, Bethanne Patrick, and today I'm delighted to be here with Michael Paul Mason. His book, Head Cases: Stories of Brain Injury and Its Aftermath, is out from Farrar, Straus and Giroux. Michael, thanks for being here. [Michael] Thanks for having me on the show. [Bethanne] We really appreciate your being here. You are a brain injury case manager at the Neurologic Rehabilitation Institute at the Brookhaven Hospital. And so what does that mean? [Michael] Well, basically, as a case manager my job was to travel all around the states and assess people who had severe head injuries and try to help them find a place to get treatment, which was pretty much an impossible task, because there are so many challenges and barriers that people with brain injury face in our current healthcare system that a lot of times I just simply couldn't get them the forward motion that they needed. [Bethanne] Let alone a bed. [Michael] Right. Let alone a bed. There's millions of people right now in America with a brain injury, and yet there are maybe some 2,000 to 3,000 beds, tops, that specialize in brain injury, you can imagine how many people are vying for each bed. And on top of that, the cost of treatment is so prohibitive to so many people, that a lot of them just simply wouldn't be able to find a way to pay for it. [Bethanne] Well, that points me to something that is very interesting. You have a catchy title--which is, I'm sure, not what you were intending--but it's a word in the subtitle that really caught my attention, and that's aftermath. So even after the treatment, the lives of the people who have been treated go on with greater and lesser success. [Michael] Right. You know--this is one of the complicated things about the injury is that because it happens to our most complex organ, it completely changes all of our plans for the future; it changes your relationship to everyone else. It has an effect on every dimension of your life, and so the aftermath of the injury is as catastrophic as the injury itself. [Bethanne] It's really difficult, and this book is made particularly compelling by your sharing of personal experiences, and the most intense is your weaving in of a sweat lodge, time that you shared, into a story of someone you call Pony Soldier, who is a Native American himself. [Michael] Right. [Bethanne] And tell us a little bit about that and why you chose to put the story together the way you did. [Michael] Well, I first met Pony Soldier several years ago when he was in a psychiatric hospital, and he was getting diagnosed as having a dissociative disorder. But what had actually happened to him was that following a concussion, he developed a lesion in his brain, and he would experience these blackout periods where for two to three weeks at a time he would have no idea what would happen. And his family would find him--you know--working and living a different life and different identity, sometimes hundreds of miles away. So--you know--this was obviously a very complicated situation because this is not a wealthy family. They don't have a lot of access to information or resources. So this family is grappling--what to do with a family member who just suddenly vanishes. Well, prior to his injury, Pony Soldier was a spiritual leader to much of his community, and he actually led the sweat lodges. And so in order to really--you know--try to experience his perspective and his side of life and where he was coming from, I participated in a sweat lodge in Oklahoma. [Bethanne] Grueling. [Michael] Yeah, it was a real marathon for me. I mean--Pony Soldier was in fantastic shape when I first met him. He was kind of this Adonis, if you will, and in perfect condition in every sense of the word. You know--I went into it just as you see me here. Not the most athletic guy. But I gave it a good shot, and I made it all the way through the sweat lodge, but it was one of the most trying experiences of my life. [Bethanne] Well, it's fascinating reading, and the thing is you point out a great thing about Pony Soldier--he was in fantastic physical shape. And so many individuals with brain injury look perfectly normal, and they have such a hard time getting people to understand that they're dealing with challenges and with injury and with things that happen after the brain injury. And that's a real barrier to getting treated sometimes. [Michael] Well, it has--it's not a new barrier. In fact, brain injury has been such a huge problem in America because of the way it's been treated historically. It's always been an invisible injury, and so because of that people with brain injuries have often been sidetracked into either the mental health treatment route--and it's not a mental illness--or they've either been put into the developmental disability route, and it's not that either. So a lot of the problems that people face have to do with the fact that many states have created--and insurance companies as well--have created these policies that treat either mental illness or developmental disability, but they don't distinguish for brain injury. And so this has led to this systemic confusion that we experience and see today in our country. [Bethanne] It's a big problem, and I know you discuss it at length in different parts of this book, but there are also some moments if not of lightness, maybe we can call them clarity. And so what have you learned from some of your clients, and what can we learn? [Michael] Well, probably the most profound thing that I've learned is that humans have an unlimited and boundless potential to come back from almost any atrocity that they can experience. With brain injury, even the most devastating injury that I've seen, there was always this capacity for dignity and ability to connect on a very human level that the person showed, and their family as well. [Bethanne] Very important. [Michael] Yeah, one of the most fascinating things I've also learned in meeting with so many people with brain injuries is just what a profound sense of betterment can come from just simply having one person in your life that cares about you. I often tell people that that is the single largest outcome dictator--or predictor, I should say-- that you can see in the life of someone with a brain injury. If they have someone who loves them, they will do infinitely better than someone who is alone. [Bethanne] Very, very interesting. And one more thing before we close-- I know that you are working on a new book right now. Is that also from FSG? [Michael] That's correct. I have my second book coming out--well, working on it right now--with FSG. It's called The Human Assembly, and it's pretty much about the future of our bodies: what happens to who we are as we begin to make ourselves more and more replaceable. [Bethanne] Very interesting stuff, and right now Head Cases: Stories of Brain Injury and Its Aftermath is out in paperback. It's by Michael Paul Mason. Michael, thanks so much for being here today. [Michael] Thank you for having me. [Bethanne] You're welcome. Join us next time on The Book Studio. [The Book Studio - thebookstudio.com]
Posted on BrainLine April 1, 2011.
Michael Paul Mason is the founding editor of This Land, a monthly magazine based in Tulsa. Mason's first book, Head Cases: Stories of Brain Injury and Its Aftermath, is an exploration into the harsh realities endured by people with brain injury.
From The Book Studio, a WETA production. Used with permission. www.weta.org.