Memo from a man with a brain injury: Who is listening?

This month is national brain injury awareness month and I wonder who is listening? Who is listening to us? To those of us who are actually living with the injuries? Never enough people, I can tell you that.

I have lived with my brain injury since I was held up and shot in the head in 1984 and I’ve worked in the field of brain injury since 1995. There is nothing unique about my experience when I tell you that it was 10 years before anyone every said brain injury to me. There is also nothing new in my pointing out that there are still too many folks who see us and treat us as if we are less human than we were before we were injured. There are those too in the field of brain injury who see each of us as a cottage industry, a way they can make as much money off us as possible by inundating us with services while never bothering to learn a damned thing about the brain in the first place.

There are those too, those poisonous messianic types, who treat us as if we are nothing more than some bacterial presence in some petri dish to experiment with. I heard of one program director from Kingston, New York way who told the wife of a man with a brain injury that there needed to be a funeral to morn her husband’s death so he, this slimy a program director, could lead the effort to recreate him. Didn’t matter to this cretin that the husband was sitting right there in the room listening to this, once again listening to yet one more person talk about him like he wasn’t even there, like he wasn’t even human.

The craft, and working with those of us who live with these injuries is exactly that, a craft, is, from a historical perspective, a new one. There are some remarkable people and some remarkable providers in my state and elsewhere who are trying with all their might to do their best by us. God bless them all. They are not only up against the newness of the task, they are too often up against regulators who don’t include them, or us for that matter, in the design and implementation of the services. Some of these regulators are truly well-meaning and some don’t give a damn. But it is like that on all fronts in life. Some care, some don’t.

For those who do give a damn, and there are quite a few of you, there a few things to remember. First, a brain injury is not a fixed being. It is in constant motion because it is a brain injury. It is one experience when we are rested, another when we are tired. It is one experience this year, and another experience the next. The role my brain injury plays in my life now is very different than the one it played a few years ago. It is hard enough to live with these damned things, don’t make it harder for us by treating us like we are less human and less valuable than you are.  You are morally and factually wrong to treat us as if this was the case.

Also, don’t under estimate us. Not only when it comes to managing our injuries, but when it comes to managing you. Remember something, we’ve been shot, hit by moving vehicles, suffered strokes, been attacked, been devastated by roadside bombs, fallen of buildings, and much much more – and we’re still here. We’re people that deserve all the support that’s out there, and we’re also some of the last folks you want to bully.

And for those of you who, like me, live with a brain injury, please remember this; you are not responsible for your injury, you are responsible for managing it. For those whose injuries are from addiction or suicide attempts, you are are not responsible for your injuries; the villain behind your injury was the disease of addiction or the wrenching life-pain that led you to want to leave this world. In other words, you are human beings, then and now, complete human beings. No one should treat you as if you are less than a complete human being, not even you.

Remember to live, remember to live.


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