KAHRMANN INTERVIEW: A BOOK ABOUT WORKING IN THE FIELD OF BRAIN INJURY

An Interview with brain injury survivor Peter S. Kahrmann regarding his plans to write a book about what it like to work in the field of brain injury for more than 13 years.

– Why now?
– Several reasons. I’ve been in this field for a while and have, I think, seen the best and the worst of it. Last year I learned I had a heart condition, which in itself might not end my life, but it certainly reminds me that none of us is here forever, and because I think the world of working with people who live with brain injuries is particularly vulnerable.
– In what way?
– Well, from a historical perspective, it’s a fairly new field, especially working with people with brain injuries, with disabilities who live in the community.
– That sounds as if there are some great opportunities.
– Absolutely true. And if people come into the field or are in the field to truly help survivors gain their maximum level of independence, it is a beautiful thing. And I know quite a few people, I mean really good people, who are in this field, this arena for honorable reasons.
– And, of course, there are others.
– You’ve got people in this field who are in it for nothing but the money. You’ve got others who are in it because they want the world to think they are these great and wonderful benefactors when they are anything but. You’ve got some who could give a rat’s ass about survivors and their families because they are just a means to an end.
– How so?
– Okay, let’s say I come up with a new medication that if it sells will make me a ton of money. Being seen as some cutting edge person and making the ton of money is what I really care about; all I want the survivors to do is take the med.
– Does that happen?
– I think it probably does, but what I’ve seen is something analogous to that.
– For example?
– I’ve seen some who think they and they alone have the answers and know better than anyone else who goes about inflicting their will on survivors, providers, and, when folks like these have too much power, especially power in high places, they can be hard to stop.
– You’ve worked in New York.
– Yes.
– New York has a brain injury waiver, the TBI waiver.
– Yes, and if you read it and its design, I think you be hard pressed to find a better one. The whole design of the waiver, which itself is a form of Medicaid reimbursement for providers who work with brain injury survivors in the community who are poor, or who have put there monies in a trust in order to get waiver services, is pretty special. It’s consumer based.
– What’s a consumer?
– Somewhere along the line, the decision was made to call survivors consumers.
– Like a consumer in a free market place.
– I suppose so. I don’t know any survivors who like the term, although I’m sure it’s well intended.
– What would survivors like yourself preferred to be called.
– People.
– …Hard to argue with that.
– That’s not what some would say.
– What do you mean?
– One of the common challenges faced by people with disabilities is dealing with people who treat us as if we are less smart, less valuable, even less human than other folks are. The whole issue at its core is very much a civil rights issue. Blacks, gays, lesbians, Latinos, Asians, the Irish, Italians, have all, at one time or another, been treated as if they were lower class, less than others. There are several poisons in the mix but one of the deadliest is that those who hold the reins to your ability to stay in the community wield a great deal of power. And some are more than willing to say, tow the line, do what you’re told, or out you go.
– That sounds vicious.
– It sounds vicious because it is vicious. Greed, the lust for power, money, are all poisonous in and of themselves. Lincoln once said, “Most men can handle adversity but if you want to test a man” or woman’s “character, give him power.” I’ve seen good people turn rotten and spoil because of it. Some don’t see it, and in their hearts believe they are doing the right thing for others, some see it, know it and are so messianic they don’t care. And then there are the wolves in sheep’s clothing.
– Really?
– Sure. They come across as nice, kind, caring people yet behind the scenes will stab people in the back without blinking an eye.
– Has that happened to you?
– Oh God yes, more than once.
– Is that why you are writing the book?
– No. It will certainly be part of the book, but no. I’m writing the book because I think I can. I want to write it honestly, with integrity, and with the sole purpose of telling the truth about my experience as best I can.
– Aren’t you angry at those that you say have stabbed you –
– And others –
– And others in the back?
– Sure. But it’s part of the journey. I try to teach people to be angry at the behavior, forgive the person. Hate the behavior, not the person. Hate the bigotry, don’t hate the bigot.
– That’s not easy.
– True. But it’s easier than walking around with hatred in your heart.
– Okay, Mr. Kahrmann. We need to pause here. We’ll continue this interview again soon.
– Great, talk with you then. And thank you.
– Thank you.

A SEAT AT THE TABLE

In one way or another I have been a human rights activist for nearly all of my 54 years. I was raised in a civil rights family. Our minister marched with Dr. King. I can remember the Sunday service after Dr. King was assassinated when the reverend Bill Daniel took all of us to task for Dr. King’s murder. We all play a role in creating a society where things like this happen, he said. He was right.

In his 1963 letter from a Birmingham jail Dr. King wrote, “Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” He was right. He was right then and he is right now.

When we talk about justice, we are talking about freedom. Each is an appendage to the inalienable right of every human being to be who there are safely in the world around them.

And so it is with an allegiance to freedom and justice for all, along with an unflinching awareness that we are all threads in a single garment of destiny, that I try with all my might and heart to apply my voice to the fight for the right of all people to be who they are safely in the world around them. Safely doesn’t just mean physical, moral and spiritual safety. Safely also means social and cultural safety. To achieve these, equality is required. To achieve true equality, freedom is required. To achieve freedom, a seat at the table of social, political and cultural discourse is required.

For 13 years now I have worked primarily with people who have survived brain injuries. I have worked in both long term and community based settings. There have been times where I have found myself in a position of having to confront patterns of behavior and patterns of decision making that, intentional or not, deny survivors their right to have an equal say in the management of their own lives.

Over the years I’ve seen malicious patterns of oppression. I’ve seen the poison of dishonesty and the insidious tool of threat used as manipulation tactics. These threats are often linked to the person’s ability to keep the services needed to retain their level of independence in the community. Cruel? Absolutely. Illegal? Should be.

Dr. King said, “We know through painful experience that freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed.”

I can tell you from personal experience that being one of the voices that demands freedom can take its toll. It can be hard and grueling and painful to endure. But I don’t mind. Yes, I get scared at times. Yes, I am at times deeply worried I will lose everything. But I will not retreat into silence when I am, in some instances, attacked on a very personal level by the forces of injustice.

Here’s the thing. I would be more scared were I to retreat into silence and tuck myself away in some corner of the world and there sit idly by as the forces of injustice had their way. Such a retreat would be tantamount to my enlisting in the forces of injustice. And that, I can tell you, would take a toll on me that I am not prepared to endure.

LETTER TO MY READERS

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

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

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.