Category Archives: TBI

LIVING WITH THE BRAIN INJURY GHOST

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Living with a brain injury is so hard sometimes it breaks my heart. I wrote those words to a friend of mine recently and as soon as I wrote them I knew this essay had finally begun. I’ve tried and failed to write it many times before. Writing about life with a brain injury is like trying to paint something in constant motion. It is nearly impossible. The brain injury never, and I mean never, stays still. Living with a brain injury is like living with a ghost.

I suffered my brain injury in 1984 when I was held-up on the streets of Brooklyn and shot in the head at point blank range. While doctors left the bullet in my brain because removing it would have resulted in more brain damage, no one told me I had a brain injury. I never heard the words traumatic brain injury, or TBI, the injury considered the signature injury of the current wars. The basic gist was this: No, Peter, you can’t play contact sports anymore and we are going to put you on anti-seizure medication for at least one year as a precautionary measure.

It would be 10 years before I learned I was living with brain damage, that the brain damage was impacting and damaging my life and, as a result, some of the people in my life.

If you think my story is unique, think again. Tragically, I am not alone. The brain injury epidemic in this country has been going on for a long time. More than 50,000 Americans die from them every year, including 7,000 children. More than five million Americans live with disabilities as a result of them and nearly 1.5 million Americans sustain brain injuries annually. Every 23 seconds an American suffers a brain injury. The Brain Injury Association of America reports that “(d)irect medical costs and indirect costs such as lost productivity of TBI totaled an estimated $56.3 billion in the United States in 1995.”

The brain injury ghost lurks everywhere and, as I imagine ghosts to be as rule, it can be highly unpredictable. It can be influencing your life experience and you don’t even know it. It can permeate light, sound, fatigue, anger, sadness, pressure, hunger, thought, perception, darkness, touch, balance, speech, memory, movement, coordination – in other words – everything and anything that you are.

Why is this so? Because your brain is your life manager. It is the filter through which you and I experience life. No doubt some will read this and say I am leaving God and spirituality out of the mix. Not so. It is through this miraculous life manager that we are able to experience God and spirituality in the first place.

But, like poltergeists, brain injuries can be mischievous, controlling, sneaky, dishonest, cruel, misleading and so forth. They can be so insidious at times that it may take you awhile to realize, if, in fact, you ever do realize, that they’ve been running the show and wrecking your daily life and, in many cases, the daily lives of others. Very often the people you like and love most. These ghosts can vandalize our daily life. They can be scary.

Yet despite these harsh realities, far too many who say they want to help and support those of us living with brain injuries have little if any idea of what it is like to live with one. In some instances, they are so predisposed to certain views, beliefs and motivations that they will never have any idea what it is like to live with brain damage.

In some, I would like to think, rare instances, the inability to understand is rooted in the fact they simply don’t care. We brain injury survivors are seen as a way of making money. Some health care providers are more about gutting and manipulating an already pitiful and unforgivable health care system than they are helping survivors ascend to their maximum level of independence.

Some in Washington and across the country squawk about the Canadian and French health care systems. They complain these systems are socialized medicine. They hope we will hear the word socialize, convert it to the word socialism, convert that word into the word communism, think them synonyms, and recoil in horror. Spare me.

Here’s how I see it. Everyone has health care coverage in Canada and like minded countries and no where near everyone has health care coverage in my country. When you are sick or injured you want health care. When you’re bleeding profusely in an emergency room you don’t give a rat’s ass whether your health care is socialized or managed care; you want the health care. In fact, you deserve it.

WORKING WITH BRAIN INJURY SURVIVORS – ESSAY #1

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Too many New York State health care providers who offer community-based services for those of us who live with brain injuries do not focus enough on the role the injuries play in our daily lives.

This neglect happens for a variety of reasons, some understandable, some not. However, the results of this neglect can be devastating for the survivor, their loved ones, and the caregivers themselves.

One can be sure the same problematic dynamic described here runs the risk of hindering services for the veterans returning home with brain injuries, or TBIs as they are more commonly called. TBI stands for Traumatic Brain Injury. I’ve often wondered if there is any other kind.

Before I go on here, let me say that Life Growth, something I teach, calls for the absence of judgment. Therefore, we must be careful not to judge anyone in this essay. While all of us are responsible for our choices, inflicting judgment on what is behind each others choices is, one, a waste of time, and two, often wrong, and three, makes the journey of dealing with the real challenge posed by brain injuries all the more difficult.

I have been in the field of brain injury for more than 13 years now and have lived with a brain injury since 1984 when I was held up and shot in the head. When it comes to getting your brain injured, trust me, that’ll do it.

My state of New York has the Traumatic Brain Injury Waiver, a form of Medicaid reimbursement for services provided to those survivors living in the community who qualify. While it has its imperfections, it is, in its design, an extraordinary start. Since the New York waiver only came into being in 1995, which historically puts us at the beginning of this journey, it is a terrific start.

One of the flaws though, which those in the New York State Department of Health would acknowledge (and it is not their fault at all), is the waiver does not cover all brain injury survivors in the state, only those who qualify for Medicaid and meet some additional criteria.

Before I get to the healthcare providers, I do want to offer a suggestion to New York’s DOH. Add a mandatory provision in the waiver that requires providers to draft a discharge plan with the survivor’s input as soon as they come onto the waiver.

There can be no doubt that the waiver already seeks to support survivors in the community with the least amount of services necessary; so the mindset of the waiver from jump street is to encourage independence. However, were discharge plans mandated from the beginning, the provider and the survivor would be consistently working towards complete independence from services, which will be possible for some and won’t be possible for others. However, it sets an appropriate tone.

Back to the healthcare providers who are, for the most part, a rather gallant lot. Working with survivors of brain injury living in the community is a new endeavor and so there will be honest mistakes. Nevertheless, we are wise to use all the information at hand in our work and here is where some providers fall tragically short.

The neuropsychological assessments for many survivors across the state often sit on shelves and accumulate dust from lack of use. Not using a survivor’s neuropsychological assessment when working a survivor is like trying to deal with broken bones without using x-rays.

Neuropsychological assessments can provide a real window into the daily realities and challenges faced by the survivors. They can help mightily in identifying the specific areas where the brain is injured and, as a result, provide a better understanding of any deficits in the cognitive realities the survivor copes. As a result, neuropsychs can play a key role in helping determine the most effective course of treatment.

Neuropsychs can also help track changes the injury is causing over time, both positive and negative. Yet too many providers leave them sitting on the shelves or, in instances were the survivors do not have neuropsychs, make little if any effort to get them one.

Last couple of thoughts for this essay (there will be more essays on this topic). Over the years of working with survivors there are some common themes that are, unless addressed, truly problematic and, for those of us who are survivors, annoying, to put it mildly. I’ll deal with one in this essay. Fatigue.

Too often providers treat fatigue in survivors as if it is something we should just snap out of it. Go splash some water on your face or drink a cup of coffee: two truly bad ideas. First, the water won’t do anything other than make our faces wet and the coffee is risky business. When someone drinks a caffeine drink and feels a burst of renewed energy, watch out, it’s a lie. All the caffeine does is turn off the “voice” in your brain that is telling you that you are tired. In short, the caffeine gets your brain to lie to you.

When you live with a brain injury, your brain is working harder than a non-injured brain. You used to have an eight-cylinder engine in your car; one of the cylinders blows out, now you have seven cylinders. True, the car still runs, but the engine is working harder. And so it is with brain injury. When we are tired, we are tired. We are not faking it.

In this instance, we are not the ones who need to wake up.
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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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KAHRMANN INTERVIEW: A BOOK ABOUT WORKING IN THE FIELD OF BRAIN INJURY

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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

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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.