Tag Archives: TBI

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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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/