Category Archives: TBI

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

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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.

Peace.

Mary Ellen Pesci: a woman that mattered

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If a loving heart, kindness, an endless supply of compassion, and an enormous amount of courage were lifelines, Mary Ellen Pesci would have lived forever.  Tragically, for those of us who knew her and loved her and for those who never got the chance to know her and love her, Mary Ellen died this past Tuesday. She was 55, way too young to be leaving this world.

I was only one of many whose eyes flooded with tears at the news that this angel of a human being had died.

Like me and far too many others, Mary Ellen lived with a brain injury.  She got her injury as a result of being hit by a car. Much of her life was rooted in a tenacious devotion to others who live with brain injuries. Her message to us was simple, pure, powerful, and true: you still matter. You count. Your value has not been diminished by your brain injury.

Mary Ellen knew that one of the challenges people with brain injuries face is managing a life in which some people tend to perceive us as somehow being less than we were before, as if, because of our injuries, we don’t matter any more. Nothing could be less true and she knew it. Remarkably, and I do mean remarkably, she was able to drive this message home with patience and kindness, even when faced with  the task of addressing people who talked about and to people with brain injuries as if they were just barely human beings.

She was on the board of both the Brain Injury Association of NY State and the Citizens Advisory Committee for the Town of Haverstraw. She was a consultant for the Traumatic Brain Injury Survivor Group and a facilitator a brain injury support group at Helen Hayes Hospital. On all fronts her compassion, bravery and devotion made its mark.

Mary Ellen Pesci was a woman that mattered, and for those of us who had the privilege of knowing her, she matters still.

 

Willing to fall down

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A brain injury is not a static being. One’s relationship with the damage changes overtime. I am no exception. It is also hard at times to determine how much is the injury and how much is rooted in one’s emotional configuration.

There was a time after the injury in which I could work 50 to 60 hours a week. That ended some years back as fatigue is an issue now. Keep in mind that a damaged brain is physically working harder than a non-damaged brain. It’s as if a six-cylinder engine is now running on five cylinders. It still runs, but it has to work harder to run.

I also deal with PTSD. So do many others with brain injury. PTSD (Post Traumatic Stress Disorder) is essentially a disorder that results from a trauma out of the norm. In my case it was being held up and shot in the head. I imagine the combination of living on the streets, being held under gunpoint for several hours before escaping, and being held up at gunpoint only months after the shooting also contributed to the presence of the PTSD.  The damage in my frontal lobe as a result of the bullet does not help. Of late, my isolating has spiked. It is rare I leave the house. I’ll put off shopping or going to the library until the last minute.

I do manage to get to the support groups I facilitate for people with brain injuries and I do manage to get to leadership team meetings for the Kahrmann Advocacy Coalition. I also get to meetings of New York State’s Traumatic Brain Injury Services Coordinating Council. I suppose I am able to break out of seclusion for the aforementioned reasons because lives are at stake, people’s equal rights are at stake, and spending time with fellow survivors of brain injury means a great deal to me.

I can tell you that the day-in day-out struggle with the PTSD-isolation is exhausting and upsetting. Those who know this terrain like I do, and there are many who do, will understand when I say it is not a matter of not wanting to go out. I do. It is a matter of breaking through what I call the fear wall. Today I succeeded in returning a book to the library. It was beautiful weather and my plan was to park and walk about the town. I couldn’t do it. I drove about the town for a short time and managed to stop at the market for a bit of food. There was a moment in the market when I was frozen still with terror. Part of me wanted to drop my shopping basket and run for the exit. Instead I finished my task and hustled back home.

Once home I realize that in that terror moment I was worried that the internal trembling would become so pronounced and debilitating that I would fall down. It then dawned on me that I need to be willing to fall down, push the edge of the terror envelope in other words and if it makes me fall down, so be it.

I will not give up, of that you can be sure. Why do I write a piece like this? In part I write it because there are many who face the same things I do and if they read this they’ll be reminded and reassured they’re not alone. And if there is anything I have learned in life it is this; the challenges we face become more manageable when we realize we are not facing them alone.

Gabby Giffords & some thoughts on head wounds

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Several years ago I was standing in an Albany parking lot talking to three other men who, like me, had survived being shot in the head at point blank range. One of us, I don’t remember who, interrupted the flow of our conversation and said, “Can you believe it? We’ve all been shot in the head and we’re still alive.”  A quiet moment followed in which each of us took this reality in. There was, then and now, an  ineffable and unbreakable bond between us. I feel the same bond with Arizona Congresswoman Gabrielle Giffords, who handed in her resignation today , as well as anyone who has experienced this form of mind-splitting, life-shredding violence.

What is rarely if ever talked about is a salient truth unique to head injuries, brain injuries if you will. When your head is wounded, whether by bullet, stroke, fall, accident, drugs, alcohol, and so on, the very place from which you experience life has been invaded, and, without mercy, damaged. I cannot and will not say one type of injury is worse than another. What I can say is there is a form of vulnerability one lives with after suffering what, in today’s parlance, is called an acquired brain injury. And acquired brain injury, or ABI, is any injury to the brain that occurs after one is born. The more commonly used term, TBI, or traumatic brain injury, is a subset of the ABI family in that a TBI is any brain injury resulting from an external event: fall, gunshot, accident.

I tend to think that all of us who have lived through these injuries live with this unique form a vulnerability, sometimes consciously, sometimes subconsciously, sometimes both. The question, or perhaps better put, the challenge we each face is this: are we willing to take part in life again knowing these things happen? My answer and my hope for myself and all others is, yes. Am I successful in this endeavor? Not always.  There are days on end when I cannot get myself out of the house. I do know I do the best I can.

I know this too; the three men I was in the parking lot that day are doing the best they can. Gabby Giffords is doing the best she can. Thousands upon thousands of Americans of every age and every walk of life are battling like hell and doing the best they can. Because we are all human, our best varies from day to day. Such is life. What I will not do, and I hope no one else will do, is give up. If we give up, then whatever life-villain damaged our brain wins. And one of the last things on earth I want to do is give the circumstances of my injury and the injury itself so much control over my life that they cause me to give up.  That is a power they don’t deserve – not ever.

The anxiety, PTSD, & brain injury wars

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One thing the trio of anxiety, PTSD, and brain injuries have in common is this; they are all in constant motion. None are fixed realities. Managing them is a task rife with unwanted undulations.   Managing them can also be exhausting not to mention, at times, heartbreaking.

My struggle with this trio stems from being shot in the head at point blank range in 1984, escaping from being held under gunpoint for several hours, a couple of years of homelessness, and the loss of five loved ones to suicide.

It would be lovely if willpower alone were enough to overpower this trio. It isn’t. Lord knows you need as much willpower as you can get too manage them. Don’t think for a minute I’m saying there is no place for willpower. There is. It’s a great ally. But it is not enough to win the day every day. The notion that we ought to be able to do so is flawed because no human being has total control over every aspect of their life. That is not how we are designed, and it sure as hell is not how life is designed.

From time to time when I have talked about my battle with this trio I’ll encounter some who seem to think I should just pull myself up by my bootstraps and get on with it. There is nothing unique about this experience. Many who face one or all members of this trio get the same response from time to time. Sometimes the response is genuinely well-intended. Sometimes the response comes from a kind of know-it-all arrogance (and ignorance), usually from people, who, upon closer examination, have some formidable challenges of their own in life and are deserving of compassion, though at the time they’re inflicting their judgment on you, compassion can be hard to come by.

Lately this trio has been all over me. Freezing me in place inside my home. Making the thought of leaving my home feel like I am walking into a blaze of gunfire without protection. It has been worse of late in large part, I think, because I know I have to leave the home I’m in and don’t know where I’ll be living next.

What I do know and am grateful for is the simple yet salient fact that I have accepted the presence of this trio as a reality. And because I’ve accepted their presence, I am better equipped to identify ways of managing them. Changes in meds, disappearing into a good book or a good movie, usually a foreign film, conversation with new and old friends, and my two dogs.

And then there is this, when I wake up each morning there is always a sense of joy at having made it to another day. That early morning hour with my first cup of coffee sitting by the fire in the woodstove is a gift that is never lost on me. It is also moment I hold fast too with deep appreciation when, in the worst of it, I am shaking like a leaf and waiting for the horrors to pass.