Category Archives: brain injury

Breaking Mountains

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It is time to come alive again and break me some mountains.

It has been my history to take on what for me are formidable physical challenges in response to life’s meaner blows.

Many years ago for example I joined and went to the McBurney YMCA on 23rd Street between 7th and 8th avenues in New York City almost daily as a way of breaking free of a year’s seclusion. A seclusion I’d gone into after being shot up and held-up at gunpoint in a matter of months.

Years later I would run two marathons in two weeks as a response to my mother’s 1992 suicide. I am a slow poke and with six marathons under my belt I’ve never run one under five hours.

And then there was the 175-mile bicycle ride in 2003 and the 1,000-mile bicycle ride in 2004 to strike back at my own brain injury and give hope to any and all who’ve sustained brain injuries or been beaten-down in any way by life. I did those rides while working for the Belvedere Brain Injury Program based in Albany, New York. I am not linked to Belvedere anymore for reasons I won’t go into – for now – bit I can tell you I wouldn’t recommend the program to a cadaver, much less a living being.

The year 2008 was in many way one of the most brutal I’ve been through in a life that by any standard has had its fair share of brutal years. As I’m sure you, my dear reader know, when life knocks you down you find out quick and certain who your friends are and who are, well, full of shit.

For me 2008 and some of 2009 was cement-thick with depression. A kind of physical immobility took place, I had been frozen still by life, largely as a result of treatment inflicted on me by the above mentioned Belvedere, more specifically, its owner, John Mccooey. My days would consist of staying tucked under blankets, sitting at the computer trying to write, reading, watching movie after movie, and, other than a weekly workshop I would facilitate with some extraordinary people, and attendance at meetings linked to a 12-step program I belong to, that was a out it. The all of me had grown still.

Like a slave breaking free of chains and shackles, I have begun to break free in the past few months, so much so I plan on breaking mountains. Let me explain. Back when I was getting into the intense bicycle riding I named the task of reaching the top of a steep climb, breaking hills. I’d see a steep climb coming up and say, I’m breaking that hill.

And so it is with mountains. There is the 3500 Club in the Catskills, a club you become a member of when you climb all 35 of the 3,500 foot or more mountains in the Catskills. Four of them you have to climb twice, once in warm weather, once in winter. I began this quest a few years ago and plan on resuming it in three weeks.

Next, or maybe even along with, I will take a run at being a 46er, someone who has climbed the 46 highest peaks in the Adirondack Mountains.

I will call the task of reach summits, breaking mountains. Like I said, it is time to come alive again, and break me some mountains.

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FRANK IN MY HEART

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A man I’ve grown to love very much over the years will likely leave this world soon. He is under hospice care as I write these words. His name is Frank. I’ve never known anyone more loving, nor have I ever known anyone with their feet more firmly planted on the granite landscape of integrity. When he does leave this world there will be a little less light in the day and a little more light in heaven, of that I am sure.

Like far too many of us, Frank is a brain injury survivor. It is in the world of brain injury that I met him and discovered his passion for justice and fairness, his wondrous tenacity and his seemingly endless willingness to give to others while asking nothing for himself in return. He is, I might add, well known for speaking his mind. More often than not, lovingly and gently. But, believe me; he can ratchet up the furnace when needed. Not a problem.

On one occasion, Frank spoke his mind directly to me in a way that I will never forget, always treasure, and, in a way that caught me completely off guard. I had just arrived at a podium to speak at conference hosted by the Brain Injury Association of New York. I can’t remember why I was speaking that day but I do know room was packed with an audience numbering in the hundreds. Having arrived at the podium the first words I said were, “I love all of you.” And then it happened. Unbeknownst to me, Frank was sitting in the center of the audience directly in front of the podium. He stood straight up and said in a loud voice filled with heart and soul, “And we love you, Peter!” I knew he meant it. Frank meant everything he said and you can’t say that about too many people, at least I can’t.

Frank told me a few years ago that words I’d said to him had helped him decide not to give up. Who Frank is and who he has been to me has helped me not to give up. Now, in this moment, as Frank moves ever closer to his departure, I find myself wanting to work even harder in life to give hope to those who feel there is none, help someone unfurrow their brow, lift their chin, square their shoulders, raise their eyes.

While Frank may soon leave this world, he will never leave my heart, nor the hearts of the many, many people who love him dearly. Frank will always be in our hearts. Death doesn’t get everything – not even close.
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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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