My blood’s boiling

It is rare indeed when I get so angry the urge to be physically violent takes over. I got that angry (and then some) this morning when I read a Facebook post from the person I love and trust the most on the planet announcing he was on his way the VA Emergency Room because he’d received a letter from the VA giving him a hearing date so he can prove he is missing his legs. Michael Sulsona,a Staten Island resident, is a 62-year-old Vietnam veteran. A once (and always) United States Marine. He is an award winning playwright and screenwriter. He lost both  legs above-the-knee during the war in January 1971 when he stepped on a mine. Recently the VA has taken a merciless run at him and, no doubt, many others. First, it sends him notice informing him  it wants to reduce his disability because, it explains, he is only missing his feet. He recently quipped, “Hey, no one whose ever met me has called me the guy who’s missing his feet.” 

When it comes to veterans who’ve experienced the flat-out horror of combat, I don’t give a damn who you are; I don’t care if you’re Republican, Democrat, Conservative, Liberal, Libertarian, Independent, Tea Party, Coffee Party or no party, you (and I) are well-advised to show respect (I think most Americans do) and treat them with respect. Don’t even think about pretending you understand what they’ve been through.You don’t because you can’t. And, when you see any of them getting brutalized by the system, like the entire country is seeing now in the latest disgrace of veterans suffering and dying because of bogus Veterans Administration waiting lists, you should speak up.  Also, if you think the mistreatment of veterans goes on under this White House’s watch only, you’re dreaming. It’s gone on for years under Republican and Democrat administrations.

Were there justice for veterans like Michael, never again would they have to worry about receiving quality healthcare in a timely manner. Never again would they have to worry about having enough money to pay the bills and function comfortably in life. Never again would any of them find themselves in the humiliating position of having to prove the wounds of war, particularly when those wounds are so glaringly evident.

Moving to the Berkshires

It is now all but certain that I will be moving to the Berkshires in Massachusetts on May 1. While it will be the first time in my life that I’ve lived anywhere but New York State, there are a few things that need to be said at the outset.

First: I will always be a New Yorker. Second: I will not end my involvement with the world of brain injury in New York. In fact, my new home is on or about 25 miles closer to Albany than where I live now. Third: Now and forever I will remain a NY Yankees, Giants, Rangers and Knicks fan. Having gotten my love for and loyalty to New York memorialized, let me say that I am genuinely happy and excited about the move. One of the first place’s I will visit once I settle in will be Edith Wharton’s home called The Mountain. I’ve read number of her books and in my view her work is one of the greatest things about American literature, any literature for that matter.

I have, of course, mapped out the area’s public library system and am overjoyed about that. More than anything though, I am looking forward to settling into a new home that I do not have  to leave. I want to pare down my focus in life to two primary areas: writing and advocacy. If I am lucky, travel would be nice.

I will deeply miss some new friends I’ve made where I’m living now, people I genuinely love and care about. But, as my closing in on 40 years of friendship with Michael Sulsona proves, you don’t have to live in the same locale to remain active friends. Michael lives in Staten Island.

And now, the process of moving. Here is exactly how I feel about moving. American playwright Lillian Hellman once said, “I hate writing, I love having written.” For me, I hate moving, I love having moved.

Getting Shot in the Head

I was 30 years old in 1984 when a wild-eyed teenager put a gun to the left side of my head and pulled the trigger. The bullet went through my skull in front of the left temple, tore a path through the left side of my frontal lobe before coming to a stop in my right frontal lobe. Bone spray was blasted into the left side of the brain.  I underwent brain surgery in which a large subdural hematoma was removed. The wound was cleaned and the bullet was left where it was. Doctors knew  more brain damage would result if they removed it.

No one told me I had a brain injury and back in the day, this was the norm. Words like brain injury and traumatic brain injury and terms like TBI had not found their way into common parlance. My marching orders were, We’re going to put you on anti-seizure meds for the first year as a precautionary measure and no, you can’t play contact sports anymore. No one said I was living with brain damage. It would be years before I learned that mood swings and short tempers and bursts of anxiety were reflections of the damage done to my brain. It would be years too before I understood why some activities exhausted me and others did not.

Fortunately, for Gabrielle Giffords and others who sustain brain injuries today, some things have changed for the better in my country. Now there is an increased awareness of brain injuries, that the injuries themselves present a range of lifelong challenges. Brain injuries don’t get all better and go away. What has not changed, or, if it has, it hasn’t changed enough, is how people with brain injuries, meaning people with disabilities, are treated. Too often people with brain injuries (and other disabilities) are treated as if they are both less valuable and, in a very real way, less human than others. Nothing could be further from the truth.

When I hear of someone getting shot in the head and suffering brain damage as a result, I almost instantly think, Please don’t let anyone lose sight of them, meaning, let no one lose sight of the fact no matter damage, no matter the personality of the disability, the person is still there. The whole of their value and humanity is not diminished.

When I hear of people being shot shot in the head, it moves me beyond description and I feel an instant bond with the person who was shot. When the person has been shot in the head, there is a unique sense of connection. Over the years, I have known a number of people with gunshot wounds to the head, I can think of eight at the moment. I remember a moving moment in 2002 when I was standing outside on a sunny day talking with three other men, all of whom had been shot in the head. One of us, I can’t remember who it was, quipped, “Can you believe we’re all talking here standing up?” to which another said, “Hell, can you believe we’re all here?”

We were all shot in the head and we all live with brain damage. And that is the reality that Gabrielle Giffords is dealing with and will deal with for the rest of her life. As my closest friend in the world, Michael Sulsona told me that day after I was shot. “Remember, you control it or it controls you.” Michael knows. A former and always in his heart U.S. Marine, Michael lost his legs in Vietnam.

One of the unique rarely talked about realities of getting shot in the head is this. The head is the sanctuary from which we experience our lives. It is there that our thoughts and feelings are shaped, emerge, and have their say. Our heads are, in a very real way, the center of our universe. And so, when you are shot in the head, the very sanctuary from which you experience life has been ruthlessly invaded, and an ineffable form of deep-seeded vulnerability results. It is, for some, the toughest challenge of all.

Gabrielle Giffords will not function entirely the way she functioned before she was shot; there will be differences. The bullet went through the left side of her brain, home to the speech center, so there may well be differences in her communication. Only time will reveal the personality of the brain injury she is dealing with. Here is what we don’t need time to tell us for sure. Gabrielle Giffords is still Gabrielle Giffords; her humanity and worth is not diminished. To treat her as if she is less than she was before is to give the shooting, the brain injury and, for that matter, the shooter, far more control than they deserve.

We are not our injuries, we have relationships with them, we are not defined by them.

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Five weeks after shooting

Living With A Brain Injury – April 2010

No brain injury is the same no matter its cause and a brain injury is never a static thing. It’s role in your life changes and shifts for a range of reasons. It is one experience when you are rested and, in all likelihood, another experience when you are tired. In a state of fatigue the brain is not as able to compensate for the damage. Aging too impacts the role the injury plays.

As one who lives with a brain injury my responsibility  is to keep an eye on its role in my life and do my best to manage it. My injury is a result of being held up and shot in the head in 1984. There is one immoveable truth that stands tall in the face of this or any disability or disease for that matter. They d0 not define who we are unless we allow them too and the most certainly do not define our value in life.

My closest friend, Michael Sulsona, lost his legs in Vietnam and another good friend of mine, Jim Cesario, suffered a spinal cord injury. Both men use wheelchairs. Both also deal with people talking to them in very loud voices because for some odd reason people think if you use a wheelchair you’ve suffered hearing loss. Go figure. Both men, by the way, stand way taller in life than most people I know.

No matter the wounds of life,  you are not gone.

It seems to me one of the keys to improving quality of life is acceptance, your capacity to accept the reality that is you. This requires honesty. For me, I’ve accepted I am an alcoholic (I will be eight years sober this July 12) and I have accepted that a brain injury and PTSD are present in my life. By accepting the realities you face for what they are, you stay right sized and by keeping them right sized you do not lose you in the process.  That to me is the greatest discovery of all. No matter the wounds of life,  you are not gone.

There are still days my fear and anxiety stop me from getting out of the house, or drive me out of my backyard and back into the house, but even so, I am more than okay. On those days I am by no means a defeated being. I am surrounded by books and the house is filled with music and, of course, the bird feeders are filled with wondrous visitors.

Your most powerful weapon

No matter what you are facing in life, you are not gone. I can tell you too that honesty, which is the core fuel for one’s capacity to accept, is your most powerful weapon.

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2010: Rethinking It All & Thanking My Readers

By and large 2009 has been a rewarding year for me.  It’s had it’s blows but all years do, nothing new there. The readership of this blog has more than doubled from last year. At times more than 2,000 viewed these pages in a given month. While a large majority of the readers are from my country, there have been readers from around the world: Canada, Israel, Saudi Arabia, Great Britain, France, Slovenia, India, Korea, Ireland, Columbia, Romania, Brazil, Australia, Morocco, Norway, Paraguay, South Africa, Thailand, Taiwan, Luxemburg, Croatia, Spain and so on.

I cannot tell you how grateful I am to those of you who visit here, whether you are stopping buy one time or, like more than I ever imagined, you stop by regularly. You can be sure this blog will keep going. In fact, this is the 228th piece I’ve written for it this year alone.

This year has had some fine realities:

  • I am still sober and without my sobriety, none of what is wonderful in life would be available to me.
  • A workshop I began in early 2008 for survivors of brain injuries and others continues to flourish and will celebrate its second anniversary in early 2010.
  • My friendship with Michael continues to show us both we are brothers, and my love for my nephews: Vincent and Philip, and now Jay, is as powerful as can be. My love for Frieda, Michael’s wife of the heart, runs so deep she is, without question, family to me too.
  • I saw Tischa Toon,  my childhood friend, who I love very much, for the first time in years, met her husband, David, a beautiful human being, and saw pictures of their sons.
  • I have a group of wonderful male and female friends and am forever grateful.
  • The survivors of brain injury, their loved ones, and all others who come to my workshops and those I have met throughout this state are people I genuinely care about and, in many cases, genuinely love. Whatever good I may bring to their lives pales in comparison to the good they bring to mine.
  • My advocacy has done some good this year, I hope, and for those who know that streak in me, you can be sure it is as alive and well and as tenacious as ever.
  • I met Christine Mansfield in Cape Cod and fell completely and utterly in love with her. And just in case that wasn’t enough, I met her daughters, Emily and Anna, extraordinary young women in their own right, and love them both.
  • I am on the New York State Council on Independent Living and I can tell you that is one spectacular group of people.
  • Although on disability, life is wealthier than ever.

This year, like any year, has had its not so fine realities as well:

  • My friend Jimmy died too soon at age 57. There is a little less light in the world with him gone.
  • I met some who offered lip-service friendships with love and loyalty firmly tied to the foundation of hot-air.
  • While there are some positive signs and things may be looking up in my state for people like me who live with brain injuries, we are not out of the woods, and I and those connected with me around the state are paying close attention.

On the horizon:

  • There are some new steps on the advocacy to be taken this year, one is already underway, the formation of a statewide coalition of brain injury survivors so that we too will have a unified voice.
  • I will devote more of this year to writing than ever before and may cut back in other areas to do this.
  • I am quietly adding things to my bucket list and will be acting on them.
  • I will begin writing a piece this year revolving around my experience of my state’s relationship with those of us who live with brain injuries
  • And more….

In the meantime, please take care of yourselves and each other. Don’t forget to say I love you to those you love. They deserve to hear it and you deserve to say it.

And, remember to live. Thank you again for reading this blog.

Warmth and respect to you all,

Peter