Tag Archives: brain injury

BRAIN INJURY INCLUDES ALL OF US

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– 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?

– Yes.

– 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.
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LETTER TO MY READERS

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Dear Reader,

Over the past weeks I have found myself so deeply disheartened at the absence of kindness, fairness, compassion and honesty on the part of my country’s leaders I’ve had a hard time moving the pen across the page. On nearly every front: political, business, religious, the media and more, I see choices driven by greed, dishonesty and a lack of respect for human life. I see New Orleans still in horrifying disarray and our young men and women being killed and maimed overseas. We have a federal government more wedded to political one upsmanship then it is to bringing our young people home and saving some lives – ours and the Iraqis. Any voiced concern for the environment, for the life of Mother Earth is, more often than not, an exercise in lip service. And, of course, the oil companies and the military complex continue tearing every dollar they can from the wallets and purses of a hard working public.

And forget about real regard and respect for law enforcment. In my last blog post I called for an Amber-alert type system to be put in place for law enforcement officers. I even sent it to some elected officials. No response. I sent it to some newspapers like the Albany Times Union and the New York Times. They did not publish it. Why? It was timely. State troopers had again been shot in my state and one was killed in the cross fire?

Despite all the aforementioned, none of us can afford to stay silent. I think it was Dante who said, and I am paraphrasing, The hottest places in hell are saved for those who remain silent in times of trouble. And so I will not, and I hope you will not, stay silent.

There are a few things on my mind now, goals I have, if you will, and I am asking for your help in achieving them.

1) I will soon begin publishing a series of essays on living life with brain damage. As most of you know, I live with brain damage as a result being shot in the head in 1984. Living with a brain injury, or a TBI (traumatic brain injury) is different every day. And given that nearly 2 million Americans suffer brain injuries annually (with more than 50,000 dying from them) and given that many of our veterans are coming home with brain injuries, the more people understand what it is like to live with one, the better equipped everyone will be to provide the deserved support. I am asking you to please make as many people as you can aware of these essays.

2) Given the recent Virginia Tech killings and our culture’s addiction to violence, I am looking to begin a college and high school speaking tour. Those of you who have connections in this area, please let me know. I will be acting as my own agent in this endeavor. I have lived a life that has included a wide range of experiences: being shot, homelessness, getting arrested, time in reform school, suicides of loved ones, loss of family, alcoholism, brain injury and PTSD. I have, as many of you know, given numerous speeches and I think life has placed me in a position to help young people (and adults) make the discovery that they need not be defined or controlled by the challenges they face. That their right to a good life does not deserve to be derailed.

3) Needless to say, I will continue, from time to time, to publish sections from the memoir in-progress and other nuggets.

I am asking all of you to please share this blog with everyone you know. Please ask people to join.

Lastly, from my heart to your heart, thank you for reading this blog. It is my sincere hope that joy, good health, happiness, love and a safe life are your constant companions.

I know what I wanted to say in this letter to you, I only hope I have said it.

Warmth and respect,

Peter S. Kahrmann
Berne, NY

DEAR BOB WOODRUFF

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Dear Bob Woodruff,

You and I and far too many others are survivors of traumatic brain injuries. You and I and far too many others who have survived traumatic brain injuries, or any trauma for that matter, have found themselves in the insidious grip of guilt. You and I and far too many others like us are guilty of nothing. Because you feel guilty doesn’t mean you are guilty, it means that is how you feel. It is a feeling, not a definition.

It was the explosion the wounded you, it was the gunshot that wounded me, it was the car accident or the fall or the assault or the stroke that wounded so many others. It is these events and these events alone that provide guilt its just living quarters

In recent interviews I have watched you and Lee take the wide-open courage step of letting people see what it is like to suffer a traumatic brain injury and what it is like to live with one. I have heard questions seeking to know how far back you are. Would you say 95 % they ask? As you and Lee and your family already know, the answer is not that easy and my thought would be, put down any instinct to measure and gauge that answer and live.

I work with survivors like us nearly every day and recently I asked them how they would describe living with a brain injury on a daily basis. There were answers like, Well, there are things we can’t do any more and other statements like they (the injuries) make it harder to manage our emotions and I don’t remember things as well as I did and I can’t talk the way I used to. In each of these discussions these answers would land on the table and we would all look at each other, shake our heads, and nearly in unison acknowledge that none of these answers come close to describing what it is like to live with a brain injury on a daily basis.

Here is what we did agree on. Living with a brain injury is different every day. In fact, living with a brain injury has one reality when rested and another reality when fatigued. We also agreed that none of us are defined by our injuries nor are we defined by the symptoms we deal with as a result of our injuries. We also agreed that none of us are diminished by our injuries, even though there have been and, for some, still are times when we feel diminished because of our injuries. We also know that there are times we are treated by others as if we have less value and less worth than others and that treatment too delivers an inaccurate message about who we are.

Years ago a very wise old man was asked what it was like to age. He paused and said, We are each like a lit light bulb. You have to decide, are you the bulb, which breaks down over time, or are you the light inside the bulb? We are the light inside the bulb, and that never dies.

The light of who you are, Bob Woodruff, is not gone. It is not damaged or diminished by the trauma you have survived. While you may not see the light all the time, while you may not see its luster and brilliance all the time, it does not mean it is not there all the time. From time to time life blinds us to the light that is our humanity’s unbending value and worth. Those moments of darkness do not mean the light is gone. Darkness, like emotion, are experiences in the moment and of the moment. Neither are definitions. The inner light and human value of all survivors is present all time.

Needless to say, the words written here apply to all of us for all of us in life encounter experiences that blind us to our worth, yet none of these experiences remove or diminish our worth unless we allow them too.

There is a nugget of American Indian lore I am particularly fond of. A warrior went to his chief and said, Chief, I have two wolves battling inside me, the good wolf and the bad wolf. Which one is going to win? The chief said, Whichever one you feed the most.

Keep feeding the good wolf as you are, Bob Woodruff. And remember, there will be times when people will ask for your attention and your presence and the healthier choice will be to say no and give yourself and your loved ones time away from all others. Saying no can prompt another bout of undeserved guilt, so here is another expression. Taking care of your self is not an act of disloyalty to anyone else.

Stay in the day, remember to live, and keep listening to Bruce Springsteen. You and I are very much in lock-step when it comes to the Boss. His songs got me through many a dark day and helped me remember that the light, for me and for you and for all of us, really is always there.

In his last album he sings We Shall Overcome. We will.

Warmth and respect,

Peter S. Kahrmann

BOB WOODRUFF, TBI AND HUMANITY

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I am with all my heart glad you are alive Bob Woodruff. I say that here first because when a friend of mine hugged me after I returned from the hospital after sustaining my brain injury, he said, “I’m glad you’re alive, I’m so glad you’re alive, I don’t know what to say” I realized I’m glad you’re alive is just about the most beautiful thing anyone can say. And so I say it to Mr. Woodruff now and I am grateful my friend said it to me just weeks after I was shot in the head, leaving the bullet lodged in my brain.

The ABC special last night about Bob Woodruff and so much more brought the harsh realities that come with traumatic brain injury (TBI) to the public’s attention like never before. He and his wife Lee (and their families) have, by allowing so many to see Mr. Woodward’s journey thus far, helped drive home the reality that those of us with TBIs are human beings, not remnants of human beings, not piecemeal human beings, not human beings to be used by greed-driven medical providers or greed-driven attorneys in order to fill their wallets and puff their egos. Those of us with brain injuries or with any disability for that matter, are still people.

While a disability might change or take away one’s ability to walk, see, remember, hear, talk, eat, or manage emotion or movement, it never takes away one’s humanity. Only humans do that.

THE AMERICAN BRAIN INJURY EPIDEMIC

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As a brain injury survivor and one who works with brain injury survivors I am saddened but not surprised that a leading expert in forensic pathology says former National Football League player Andre Waters’s November 2006 suicide was likely tied to brain damage suffered by Mr. Waters over his playing career.

The New York Times today said forensics expert Dr. Bennet Omalu of the University of Pittsburgh “determined that (Andre) Waters’s brain tissue had degenerated into that of an 85-year-old man with similar characteristics as those of early-stage Alzheimer’s and that if he had lived, within 10 or 15 years “Andre Waters would have been fully incapacitated.””

There is an epidemic of brain injuries in the United States and we, as a people, are playing catch-up. In some quarters we are waging the catch-up battle valiantly, but we have a long way to go.

I sustained my brain injury in 1984 when I was held up and shot in the head at point blank range. While I received extraordinary medical care, no one, and I mean no one, mentioned the words brain injury or brain damage to me. And so I left the hospital with a bullet in my frontal lobe, bone spray in my left temporal lobe, and a sharp awareness that I would be wise to avoid contact sports.

It would be nearly 10 years before I learned that the damage to my brain impacted my daily life in a very real way. I am far from alone and not even in the same room with unique on this front. Millions of Americans deal with brain injuries. Think this is an overstatement? Try these facts on for size.

– With more than 50,000 Americans dying every year from brain injuries, it is safe to say more than 1 million Americans have died in the 22 years since I was injured, including more than 150,000 children.
– 1.4 million Americans sustain brain injuries annually.
– In 1995, direct medical costs coupled with lost production cost the United States an estimated $56.3 billion.
– Many members of the American military wounded in Iraq and Afghanistan have suffered brain injuries.

If you think only football players or those in contact sports run the risk of injuries like those suffered by Mr. Waters, you are sadly mistaken. A couple of years ago I went to a conference on brain injury at Mount Sinai School of Medicine in New York City. A forensics expert showed that if you have someone lie down on their back, lift their head 12 inches off the ground, and let go, the skull is travelling 40 miles per hour when it strikes the surface.

We are not quite holding our own in this catch-up battle. There was, after all, no brain injury association on the national level until 1980. Now we have the Brain Injury Association of America, a wonderful organization. States have their respective brain injury associations, all deserving of their citizens support. I am a member and board member of the Brain Injury Association of New York.

Unlike cuts and bruises and broken bones, brain injuries do not heal. Yet the reluctance of so many to take simple precautions is mind boggling. I have seen the following scene too many times. A family is on a bicycle ride. The children are dutifully wearing their helmets (sometimes) while the parents are not wearing their helmets. Perhaps the parents think that adulthood means they are no longer beholden to the law of gravity. Or, perhaps, there is a bit of vanity at work, some concern that one’s hairstyle will get messed, or, some “real man” doesn’t wear a helmet because he is , well, a “real man”. Dazzling displays of reasoning for sure. Tell you what though, when you’re paralyzed and/or you can’t remember what happened five minutes ago, remind me to ask you who your hair stylist is, or what it’s like to be a “real man.” But then again, why should I bother? You won’t remember anyway.

If you are from New York State, you can contact the Brain Injury Association of New York, the one I belong to at http://www.bianys.org/

Contact the Brain Injury Association of America for information on a Brain Injury Association near you. Please visit their website at http://www.biausa.org/