Monthly Archives: July 2009

Living With Brain Injury – Part III: The Isolation Challenge

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Isolating yourself from the world is an all too common occurrence among those who live with brain injuries, myself included.

For those who know me from a distance, this acknowledgement on my part may surprise them. I give speeches and facilitate workshops and seminars and so forth, but other than that, getting out of the house and into the world around me is no easy task, and, in the world of brain injury, I have a lot of company.

There are reasons I have three dogs and a vegetable garden. They all get me outside and once I am outside, away from home, and engaged in a task of some kind, I’m fine and enjoying myself. I love wonderful conversations and bookstores. I hope, for example, that heaven itself is a book store and there I will find an endless supply of books not published  on earth written by Dickens, Tolstoy and Steinbeck and others. I love the sound of laughter, especially the sound of a baby giggling; I’m not sure there is a sound anymore heartwarming than that.

But it is breaking the isolation barrier and getting out of the house in the first place that can be the “Mount Everest” challenge.

When I work with others – and on myself – the are some basic Life Growth tenets I teach. Life Growth is a life-management philosophy and protocol that gives back to the person their individuality and identifies the challenge – not the person – as the opponent. For example, I am not my brain injury. I have a relationship with it and I am the one who deserves to be guiding my life, not the injury. It is the same with isolation. It is not who I am, none of us who struggle with it have our character and worth defined or diminished by it. But, like in any relationship, we do have some say.

The very first step for those who face the isolation challenge is to accept that the challenge is real. It seems to me that any hope of gaining freedom from this or any challenge slips from our grasp if we don’t accept the reality of the challenge in the first place. I would not be celebrating seven years of sobriety this month if I did not accept that I deal with the disease of alcoholism. I would not be able to write these words to you if I did not accept my eyesight was getting bad and, as a result, got me some glasses that let me see the damned words in the first place. (Are you smiling? I hope so. There is no reason for sadness as we discuss this. Isn’t it kind of nice that we get to connect with each other like this, through words, isolation or no isolation?)

The emotional equation goes like this: You have to accept it in order to manage it and you have to manage it in order to get free of it.

What those of us who know us should not do is judge us. We get trapped in isolation for a reason,  not because we are lazy or weak and need to simply snap out of it.

As to why the challenge of isolation is so prevalent for those of us with brain injuries, I’m not sure there is any one set answer, though there may be. Part of the answer for many of us, I think, is this. When you are traumatized with a brain injury, no matter the cause, your it can’t happen to me syndrome is gone. The task then becomes taking part in life knowing these things can happen, so it is no wonder so many of us hunker down in the perceived safety of our homes and stay there.

But then here’s the question, the key question in my book, if we surrender to the isolation, then the very trauma and presence of our injuries now robs us of taking part in life.

Let me ask you, who do you think deserves to be in charge of your ability to take part in life, you or the injury? I vote for you – and – by the way – for me too.

 

Kahrmann Acceptance Speech

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Note to the reader:

On June 5 the Brain Injury Association of New York was kind enough to give me this year’s Ted Weiss Advocacy Award. It is the second time they have given me this award and I am deeply grateful. A United States congressman from 1977 to 1992, Congressman Wiess was an advocate, not just for his constituents, but for all people. He was particularly fierce in the arena of healthcare, not blinking when taking on shoddy health practices for veterans, in nursing homes and more. It is a humbling experience to have my name linked in any way to so honorable a human being as Congressman Ted Weiss.

At this year’s conference I gave an acceptance speech which has prompted an enormously positive response. It is one of the few speeches I actually wrote beforehand and it was recorded. In light of the intensely positive response, I am publishing the text of the speech here.

Ted Weiss 2009 Advocacy Award Acceptance Speech

Before I get started let me first tell you that my favorite movie is, It’s A Wonderful Life. In that movie there’s a scene where Clarence the angel tells Jimmy Stewart that every time you hear a bell ring it means an angel has gotten their wings. I have decided that every time I hear a cell phone ring, say, during a speech, it means an angel has gotten their wings. That’ll make it easier for all of us.

For me, advocacy is an allegiance to the one thing all of us have a right to expect – equality. Advocacy has to be a tenacious alliance with an individual or group when their equal rights are being threatened. We hold these truths to be self-evident, that all men – and women – are created equal, that they are endowed by their Creator with certain inalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

These rights – your rights – will die on the vine of hope if they are not given the water of respect and the sunlight of dignity. Your voice and mine play major roles in this task.

We’ve lost some extraordinary voices this year, a man I never met though I’m sure was deeply special, he was a drummer, Patrick Cavallo[1], and two who worked in this field, Frank Pierce[2] and Mark Ylivisaker[3]. Like many of us, both men knew the difference between those who really knew them and those who merely sought to use them. Neither man allowed the latter group to distract him from helping others. And, by the way, they’ve got their wings.

While it is true that time will still all our voices, I believe the voice of the human spirit lasts forever. The human spirit is alive and well in each of you: it lives in those of you who teach us you do not have to stand up to stand tall; it lives in those of you who teach us you do not have to have sight to have vision; and it lives in those of you who teach us you do not need hearing to know the sounds of injustice.

There will always be some who look to rob others of their equality because they are more concerned about fattening their wallets and thickening their bank rolls. I know there are people like this because I’ve met them and been wounded by them. I have heard their sweet sounding sugar coated words packed with arsenic. I’ll say one thing for brain injuries, I’ve never seen a fat wallet or thick bank roll protect someone from getting one.

Like other advocates, I have endured the efforts of those who would like to silence me.

But I will not be silent.

I will not be silent when I see anyone – any of you – being treated as if you are some form of diminished humanity. I will not be silent because what I am really talking about here today is freedom – your freedom and mine. The freedom to be who you are – safely – with equality – in the world you live in.

And when it comes to preserving our freedom, silence is never an option.

It is a wonderful life. Remember to live it. Many of you have earned your wings already.

Thank you, I love you all.


[1] Brother of BIANYS president, Marie Cavallo

[2] BIANYS board member, brain injury survivor, veteran

[3] Clinician know worldwide for his remarkable and innovative work with survivors of brain injuries.

Maceo thinking, “That’s One Ugly Bitch”

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Maceo in Willie’s Diner sipping coffee staring down at the morning paper thinking, Man, that’s one ugly bitch. Looking  across the table at Murphy, all 280 pounds of him, he says, “Don’t she get uglier by the day?” and points his chipped coffee mug at the picture of Sarah Palin under a headline announcing the Alaskan governor’s resigning from office ,  “She’s resigning because she thinks she can,” he looks down at the paper, studies a moment, reads out loud,  “fight for our children’s future from outside the governor’s office.”

Murphy chuckles, swallows a belch, says, “She could help kids more maybe if she did it from outside the country,” pauses, then adds, “She did get fuckin’ ugly quick.”

Maceo, smiling now, says, “Like, you know, you meet someone and maybe they look, you know, alright and shit, and then they’re real nice and soon they look nicer and nicer. Well Palin’s the reverse of that shit. McCain picks her and I think, Now that’s one hot looking lady.”

Murphy nods once. “Yeah, that lasted.”

“Five minutes tops.  She starts talkin’ about she knows foreign policy and shit ‘cause she can see Russia from Alaska.”

“Good glasses, man.”

“She got ugly fast.”

Murphy nods agreement. “That’s one ugly bitch.”

If You Need Me

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If you need me, I’ll be there, with kind arms waiting, no furrowed brow for you.

Daylight comes and daylight goes, dreams seem to do the same, but I tell you

If you need me, I’ll be there, bringing you a cup of tea sweetened with a smile

From me because you are you and that’s all you need to be

If you need me, I’ll be there.  In coming storms or in the thick of pain, during times

Of hunger and lost hopes and lives, I’ll be there, in your dreams, in your heart always

If you need me, I’ll be there, in the song of the morning birds, the early day sun glowing

Warmth into your heart, because I love you, you know that, I am there, you can hug me

If you need me, I’ll be there, in the quiet and in the loud, in the darkness and in the light

In the rhythm of your footsteps in the morning and in the night I am there always

If you need me, I’ll be there, because you are you and that’s all you need to be

In life and past it, I’ll be there, loving you, always, because you are you and I am me

We Are Not Children, We Are Not Slaves: Living With a Brain Injury – Part II

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It would be understandable but inaccurate to blame the New York State Department of Health for the existence of problematic companies that provide services under the state’s Traumatic Brain Injury Waiver. The DOH does not have unlimited resources in staff or funding.  Over the years I’ve had largely positive experiences with the DOH. There are people there who care deeply about those who live with brain injuries. I do not for a second envy the unwieldy and baffling bureaucracy they are asked to negotiate daily.

Historically, the waiver is new. It only came about here in 1995 and 14 years in existence does not a perfect program make. I think all would agree the waiver is a work in progress and so it should be, always. I think the DOH understands this and I applaud them for their efforts. Yes, there are issues and problems, but is this not the case with all new things?

One of the tools the DOH does not have – but deserves – is enough people to thoroughly survey and expect the companies that provide waiver services. Again, this is not because the DOH does not want to keep track of things. Budget realities and  skewed priorities (not of the DOH waiver staff’s making) get in the way. Moreover, the reimbursement rates the companies are paid for providing waivers services are so low they would be laughable were the results not so tragic. And the tragedy  on this front is at least twofold. Because of the low reimbursement rates these companies are hard pressed to stay afloat (some do not), and those of us who live with brain injury are saddled with so many hours of programming every week  fatigue takes over and puts us at risk in a very real way.

Consider this for a moment. When the brain is damaged, no matter the cause, there is now less brain doing the work. It’s as if you had a car with a six-cylinder engine and one of the cylinders blows out leaving the engine operating on five cylinders. The car still runs, but the engine is working harder. And so it is with brain injury. We still function but our brains are working harder, so fatigue is a major, major problem. When some of these companies pile on the hours of programming, the toll it takes on those of us with injuries is brutal.

Some companies load up on programming hours because they honestly,  but mistakenly, feel it is effective, others load up on  programming hours because they are all about making money and only see those of us with brain injuries as a way of doing just that. The hell with the damage it does. There’s plenty of us to go around. Keep in mind,  something like 1.5 million Americans suffer a brain injury every year.

– to be continued