Michael Paul Mason Talks About Unlikely Heroes
BrainLine got the chance to catch up with Michael Paul Mason about his role as a brain injury case manager and writer and talked with him about the unexpected heroes he works with every day.
Rob Rabe in the early '80s was this quintessential American young jock. He was a point guard on his basketball team. He was the star quarterback of his high school. And shortly after graduation, he gets in this terrible car accident where he gets in a collision involving a drunk driver. He actually I believe is pronounced dead at the scene and then begins making some noises and eventually his life is saved at a hospital nearby. However, when he comes out of this lengthy coma, his family learns that he doesn't have the ability to move anymore. He had suffered a brain stem injury, and this impaired his motor abilities. And so he went through a very lengthy recovery of a couple of years in a hospital. And this is actually unheard of now. Most people, their insurance simply doesn't allow for a couple of years time in rehabilitation. But that's exactly what he received. In his home state of Iowa at that time, there were no resources to speak of, and so his mother advocated with many other families who were in similar situations. And together, this group of families actually created such a powerful network of advocacy that they got a brain injury rehab up and off the ground in Iowa. Now it's considered one of the premier brain injury rehabs in the entire US. But this rehab was in part created because of Rob's injury. Many years later, Rob became a director at his own rehabilitation center in Colorado. And incidentally, his mother contracted cancer, and one of the few places available to her was Rob's center. So he ended up extending life-giving services to his own mother who had given just the same type of care and love decades earlier. He was in turn there for her when her life needed help. In the case of Rob Rabe, the single most important factor for his growth and recovery and his rehabilitation and his productive life has been his family. And time and time again this is what I see in the lives of brain injury survivors. Those people who have at least someone who loves them-- it may be just a friend, but if they have somebody, their level of outcome will far exceed that of someone who doesn't have any family member or loved ones. I believe an individual can make a tremendous amount of change even within their community. And I think that that's essentially how reform is going to happen and how I've seen reform happen. In your own city, you can advocate aggressively. You can be the squeaky wheel. You can go to people who provide services or who are specialists and ask them for advice. You can contact your state head injury administrator and volunteer to sit in on advisory councils. You can do very practical things as well. You can give brochures to the coach of your child's football team or volleyball team and let them understand how to react to a concussion-- these simple educational things. One of the most frustrating things about brain injuries is that a huge majority of them could have been avoided. And I can guarantee you that of the 1.6 million people that sustained a brain injury, none of them had anticipated it. Not a single person is ever prepared for brain injury. And that's also one of the most harrowing things about the injury. There's one case that I've been working on, a young woman with a seizure disorder. Her stepmother and I have been talking for about three and a half or four years now. The young woman still has not received the kind of help that she needs. But this mother contacts me almost religiously about once a month asking if anything has changed, asking me who she may be able to talk to to make things different for her daughter, giving me updates as to what is going on. She is in a very difficult situation. She's in a very poor state that has very few supports for her. She's a single parent taking care of this stepdaughter of hers, and it essentially is her life. She is a full-time caregiver on top of being fully employed. And nobody is telling this woman thank you or paying her for any of her services. If anything, it's costing her everything. And all she really wants is for her daughter to get better. She hasn't given up hope. I respect that. I've seen heroes in the most unlikely places. I do draw my encouragement from family members. I mean, talk about Sisyphean struggles. These people who care day in and day out for a severely injured person, just the amount of devotion and love that they exhibit is uncommon. It's really amazing to see the selflessness at work there.
Posted on BrainLine December 1, 2008.
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.