Author Archives: Peter Sanford Kahrmann

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About Peter Sanford Kahrmann

Writer, disability rights advocate, civil rights advocate.

Thanksgiving, Michael Sulsona & What the Fuck

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Many years ago, around 1975 I imagine, Michael and I are driving through Coney Island in his red Karmann Ghia. As we were riding along I find myself wondering how he is able to be so comfortable in his own skin. While we have only known each other a year or two at the time, you only have to be with Michael Vincent Sulsona for twenty seconds to realize you are with someone who has the capacity to accept his reality nearly the instant it occurs, and never lose his sense of self in the process. To put this remarkable capacity to accept in context, I met Michael not long after he lost both his legs in Vietnam at age 19; he was a Marine

Anyway, there we were driving along, and I ask, “What’s your philosophy on life?” He briefly considers this and says, “What the fuck.” I remember thinking, Wow, that’s cold. So I ask what he means and he says, “When things happen you have to know when there’s nothin’ you can do about it and say, What the fuck, and keep going.” If you think about, what he is saying, you’ll realize it is a deliciously Brooklynized version of the Serenity Prayer: God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Michael and I have been friends for about 35 years now. I think about writing about him but I always put the pen down knowing I don’t stand a chance in writing the difference he has made in my life. I can’t possibly articulate how much I love him, how he has, in a very real way, become my brother, how much his sons, Philip and Vincent mean to me, how I know that were it not for the solidity of their presence in my life, making it through some dark times would have been much harder.

Believe me, there are not many people I trust completely. There are some I trust completely when it comes to certain things, but very, very few that I trust completely in all things. And I can tell you right now, I trust Michael and his sons that much.

If I could do anything for Michael it would be to make some producers realize Michael is, without question, one of the best screenwriters and playwrights around. Likely one of the best my country has ever produced. He has had God knows how many plays produced, won a number of awards, and continues to produce work that is dazzling in its depth and scope. Michael is also proof the quality of ones work does not always have much to do with who buys it and produces it. Let’s face it, Dan Brown, of “Da Vinci Code” fame has made millions and, truth be told, his writing is so horrible he makes Danielle Steele look Shakespearean by comparison.

The genesis of this essay was a desire to write something for Thanksgiving. And while this essay does not do its subject matter justice, I am damned glad Michael, Vincent and Philip Sulsona are in my life. They are very much my family. And while nothing I write will ever succeed in telling them how much I love them, I’d like to say, being able to write anything about them is something I am very thankful for.

Living with a Brain Injury: Them There First Hours

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A few housekeeping things on the front end of this essay. First, no two brain injuries are exactly alike. Second, too many healthcare providers (and others) act as if they are alike and treat us as if they are alike and that does nothing by amplify the already formidable challenge of living life with a brain injury. Third, there are some similarities. One of them I will talk about here, is the fact that our relationship with our injuries changes over time. As we age, our physiology changes and we change.

Before I move on, let me say that the number one complaint I hear from survivors across my state and beyond is they are far too often treated like they are children. It’s true. I’ve witnessed it. Two facts to keep in mind: no one every suffered a brain injury and got younger, and no one ever suffered a brain injury and lost their individuality.  I was 30 when I got shot in the head and when I came to on the ground, damned if I wasn’t still 30 and, by the way, still Peter Kahrmann.

All of us who live with brain injuries face the task of learning how to recognize when the injury’s impact is present and then developing ways of managing that presence. Given that this presence changes, many injuries, for instance, are one experience when we are rested and another when we are fatigued, we are all, like everyone else on the planet, a work in progress.

Over the past months I have been relearning how to manage the first hours of my day. When I wake up in the morning I generally know the things I am supposed to do that day. Go to the store, make a phone call or two, write and answer some emails, get dog food, feed the dogs, go for a walk, work on the book, read, go to the market, and so forth.

Now, pretend for a moment, that everything I just mentioned represents a ball I want you to juggle without dropping. Not easy, perhaps impossible, which is exactly how I feel about being able to complete my day’s tasks when I wake up. Impossible! When I wake up and register the things I am supposed to do that day I am instantly overwhelmed, frightened, and positive I can do none of them. I can’t emotionally do the juggling and thus am unable to envision how on earth I will get anything done.

But there is good news. This early morning flooding is temporary. I have learned it takes my brain time to wake up and gather itself because, after being awake for a couple of hours, what felt impossible now feels very possible. And so, my early morning strategy is reminding myself that this too shall pass. So, I have my morning coffee, relax, read the news on the web, and wait for my brain to wake up.

Before I sign off here, a word to those in the healthcare field who work with us. If you don’t provide us with a non-judgmental environment that recognizes our individuality you will fail miserably in your stated desire to help us grow our lives. In fact, you will make the task of growing our lives and managing our injuries even harder. I know what I say here will make a difference to the many providers who truly do care. I also know what I say won’t make a damn bit of difference to the providers who don’t care. They’re out there too. I’ve seen’m.

Reality’s House

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Nothing but sweet talk times are long gone by

No sandcastle dreams on the horizon for this man

I’m singing soft beat rhythms in reality’s house

Striding true and steady in dreams come true

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Setting pen to paper here and my brother

Michael writing reality’s truth over there

We’re from the backstreets of hard times

Tapping out our words in reality’s house

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Not worrying now about tomorrows

Cause  tomorrows are bound to come

And when don’t no more for me my friend

I’ll have lived my time real in reality’s house

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So all you dreamers keep on dreaming

But don’t miss the magic of the day you’re in

‘Cause the magic’s here for you and

Your life living real in reality’s house

 

Getting Out of Your Own Way

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Henry David Thoreau was right when he wrote, “Go confidently in the direction of your dreams.  Live the life you imagined.”  As cast in truth as his words are, many find themselves shackled by messages  they’ve been given that lead them to believe being who they are can be dangerous. And for some of us, it was exactly that – dangerous. Parents, teachers, family members, clergy, so-called friends, along with romantic partners in life can  destroy one’s sense of value and worth by giving us the message that who we are is hideously flawed and if we’d only just live life the way they wanted us to, everything would be alright. Bullshit.

My message to you is a simple one. Disengage from anyone who does not and will not accept you for who you are. Do it. Lovingly if you can, but do it. Here’s the thing. If you have to give up who you are to be connected to someone in life, the results will be nothing but tragic.

One of the hardest things for many of us to do is give ourselves permission to be who we are and our opponent in this quest is our respective histories. Many have been told they are stupid, ugly, too fat, too thin, to weak, too intense, not intense enough, too dramatic, not dramatic enough, and so on. Another impediment to our giving ourselves permission to be who we are comes from those who have ignored us. Parents who simply ignore their children. What message does that send? The ignored child is being given the terribly inaccurate message that they have no value, else why would they be ignored?  The problem here rests with whoever is doing the ignoring. The problem does not rest with the one who is being ignored. But for a child who does not have the life experience with which they can gauge they way they are being treated, the results are brutal. No child deserves to be ignored.

Too often people in our life ask us to march to the beat of their drummer or some drummer they’ve decided is the be all and end all. This notion  is, in a word, bullshit. If there is purpose to our lives, and I believe there is, it is to be who we really are. What else could it be?  If you are one of the many who believes in God, and believes that God created you, why on earth would God create you if God didn’t want you to be you? I very much doubt God has a problem articulating on the creation front.

So, listen to Thoreau, “Go confidently in the direction of your dreams.  Live the life you imagined.”  It’s your life after all, and you deserve to live it as you.

Update on NY’s TBI Waiver

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The New York State Department of Health is looking for a not-for-profit entity to serve as the state’s neurobehavioral resource project. At least $400,000 in state tax dollars is available for the first year of the upcoming contract. The current neurobehavioral project has been headed for the past 15 years by Timothy J. Feeney who, as this blog as reported, who misrepresented and continues to misrepresent his credentials.

Mr. Feeney’s contract expires December 30 of this year. The concern now for survivors of brain injury like myself, along with health care providers and family members, advocates and others, is what standards will the DOH set this time and will the DOH be sure to vet those who contract with the state to provide support and services to people who live with brain injuries.

While the Feeney era may appear to be over, it ain’t over until it’s over, as the delightful Yogi Berra says.

The following is the standards the NY DOH is seeking for the director of the neurobehavioral project. While there seems to be an increase in standards, it concerns me that the qualifications being sought are absent any real clinical background in brain injury. In other words, one would have hoped a neuropsychologist or neurologist would be sought. You can review the grant funding application request in its entirety at:

http://www.health.state.ny.us/funding/rfa/0908031109/0908031109.pdf

To be qualified to be the Project Director, the individual should possess substantial clinical experience with persons with a TBI and/or a neurobehavioral disorder in community based settings. Project Director must have one of the following credentials:
(A)
A license and current registration to practice medicine in New York, and board eligibility or board certification in psychiatry with three (3) years of experience providing behavioral services; or
(B)
A license and current registration to practice psychology in New York State, and three (3) years of experience in providing behavioral services or traumatic brain injury services; or
(C)
Master of Social Work, Doctorate or Master degree in Psychology, Registered Physical Therapist (licensed by NYS Education Department pursuant to Article 136 of the NYS Education Law), Mental Health Practitioner (licensed by NYS Education Department pursuant to Article 163 of the NYS Education Law), Registered Professional Nurse (licensed by the NYS Education Department pursuant to Article 139 of the NYS Education Law), Certified Special Education Teacher (certified by the NYS

Education Department), Certified Rehabilitation Counselor (certified as a Certified Rehabilitation Counselor by the Commission on Rehabilitation Counselor Certification), Licensed Speech Language Pathologist (licensed by the NYS Education Department pursuant to Article 159 of the NYS Education Law), or Registered Occupational Therapist (licensed by the NYS Education Department pursuant to Article 156 of the NYS Education Law), and a minimum five (5) years of experience providing neurobehavioral services.

If you have suggestions or comments or concerns, please let this blog know, and don’t hesitate to contact:

Charlotte Mason

NYS Department of Health Office of Long Term Care Division of Home and Community-Based Services Bureau of Medicaid Waivers

99 Washington Avenue, Suite 826

Albany, New York 12210

Attn: Brenda Rossman
E-Mail: tbi@health.state.ny.us