Tag Archives: traumatic brain injury

AFTER TRAUMA, REMEMBER THE BASICS

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Life happens to us whether we like it or not. All of it, including trauma, and the numerous experiences that fall under the umbrella of trauma: accidents, acts of violence, the death of a loved one, the loss of a job, home, friendship, the onset of disease or disability. The list goes on.


There are no magic answers to managing trauma other than to give yourself permission to go through the experience and seek the kind of support, not that you need, but that you deserve. There is something else too. Remember the basics.


When I say remember the basics, I mean exactly that. Do your best to remember to bathe or shower. Don’t forget to wash your hair, brush your teeth, wash your clothes, change your clothes. If you’re having a hard time finding your appetite, try to eat some healthy foods. If you find you can’t stop eating, again, healthy foods. Your body deserves as much respect as your heart, mind and soul. Remember to keep clean sheets on the bed. If you are prescribed medicine, remember to take it. See if you can tidy up your living area from time to time. If you find yourself struggling with these things, try and let someone know. I don’t for a second think you need help or need support, I think you damn well deserve it. We all do when life takes a hard run at us.


If you are struggling with the basics it does not mean there is something wrong with you. It does not mean you are flawed person or, for that matter, a weak person. It means that you are a human being and there are times life dishes out experiences that still our regular life patterns and knock us down. No matter how difficult and grueling the experience of being one can be from time to time, being a human being is a good thing. It may not always feel that way, but I believe it always is that way.


Allow yourself your humanity. When you remember the basics, even if you can only manage some of them, you are remember to take care of yourself in a very real way. Taking care of the basics forces us to remember ourselves, and tend to ourselves. And that, I promise you, is a healthy thing – and a healing thing. Remembering the basics is you taking care of you. And if there is anyone you deserve support from – it is you.



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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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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