Monthly Archives: February 2012

Moving to the Berkshires

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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.

Michael Kaplen needs to go

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If I could flip a switch that would completely remove one person from the world of brain injury, Michael Kaplen would vanish.

Apparently, the fact his term on NY State’s Traumatic Brain Injury Services Coordinating Council ended in 2004, coupled with the fact elections appear to be way overdue for the position of council chair, a post he clings to like Linus clings to his blanket, means nothing. The agenda released for the TBISCC’s meeting on March 1 (see below) reveals Kaplen has no intention of addressing either of these issues. One  hopes council members and the New York State Department of Health will hold him accountable, even though doing so may result in a Kaplen hissy fit.

Living with a brain injury is a formidable challenge and then some. But we are not the only ones facing tough challenges.  The challenges the New York State Department of Health  faces in it relationship to services for New Yorkers with brain injuries are formidable to say the least. So too are the intensely formidable challenges the Brain Injury Association of NY State faces in its work. 

But here’s the difference. When I talk with BIANYS leaders like Judith Avner, the executive director, and Marie Cavallo, the president, there  are things we agree on and things we disagree on. What all three of us have in common is this; we all truly care. When I talk with Mark Kissinger, Deputy Commissioner for the DOH, and Mary Ann Anglin, a division director for the DOH, there are things we agree and disagree on. But again, what do we have in common? We all care.

I don’t believe for a millisecond that Michael Kaplen cares. I don’t think he cares about anything but Michael Kaplen. I can also tell you that if you ever want to speak with him and can’t find him, just take out a camera and he’ll appear before your eyes in a flash. One particular rather self-serving behavior of Kaplen’s provides, perhaps, a clue to what he is all about. Past BIANYS board members as well as this writer remember times at board meetings that he would go around the table and place a business card – from his law firm – at each person’s place at the table. One year at the NYS DOH’s Best Practice Conference, at a time when Kaplen was the BIANYS president, a couple of us noticed that he was going around the entire room, which seated 1,000 people if not more, placing business cards from his law firm on each and every table. To this day he may not know that I went around the room and, with the help of an ally, removed nearly all the cards.

It will surprise few, if any, that when the BIANYS board voted on a well-designed ethics policy, every board member voted in favor, except for Kaplen. He chose to abstain.

In my opinion, Kaplen is a bully. I have seen him threaten to embarrass every member of the BIANYS board of directors because there were some who had an opinion that differed from his. In fact, his behavior was so nasty,  the board had to break so some members could gather themselves. One board member, a woman with a brain injury who was at her first meeting,  was so frightened by Kaplen’s behavior she was shaking.

In one of the first TBISCC meetings I attended I watched an exchange between Kaplen and Mary Ann Anglin. Ms. Anglin was asking a series of perfectly reasonable questions. Kaplen could not have been more unpleasant or acted more put out if he’d gone to Actor’s Studio  to master the display of both conditions.

At another TBISCC meeting an American Veteran in attendance who lives with a brain injury asked a question of a presenter. The veteran was immediately pulled up short by Kaplen who sternly explained that now was not the time for him to be asking questions. When, moments later, two council members offered to give their time to the veteran so he could voice his question, Kaplen yelled at them. Like I said, he’s a bully, and like most bullies, he’s a wimp.

Kaplen has also taken his runs at me. A few years back he represented me (with significant help from another attorney behind the scenes) in a case against what was then called the NY State Crime Victims Board. On one occasion I left him a voice mail with some questions. He then left me a voice mail angrily telling me not to ask him stupid questions (this from a man whose law firm claims to act with compassion towards people with brain injuries). Then, when the judge had the case under review, I left him a message telling him that whatever the judge decided, we needed to talk to determine how best to roll out our response to the media.

Can you guess how I found out the judge ruled in our favor? A reporter called me to ask me my response to the ruling. Who told the reporter? Right. Kaplen. And so, I decided to have some fun. I left Kaplen a voice mail. In it I told him that he should be grateful that it was not 25 years earlier because had he done this back then I simply would’ve taken him outside and slapped the sh*t out of him. He later whined that I’d threatened him. No, I explained, I did not threaten you. I simply explained what would’ve happened to you 25 years ago, so, be happy; you’re a lucky man.

The world of brain injury in New York is not lucky to have Michael Kaplen in their midst. It is my hope the council will stand up to his bullying and cut him loose.  If they do, then we can all be lucky together. And then, we can all focus on the difficult challenge of supporting each and every New Yorker with a brain injury in their just quest to reach their maximum level of independence.

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As promised:

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

875 Central Avenue, Albany, New York

(Main Conference Room)

Thursday, March 1, 2012

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome

Introduction of New Member

Review and Approval of Minutes from

September 12, 2011 Meeting

10:45am – 12:00pm New York State Five Year TBI Action Plan

Carla Williams, Deputy Director, Division of Long Term Care, NYSDOH

12:00pm – 1:15pm LUNCH (Members on their own)

1:15pm – 2:00pm Impact of MRT proposals on TBI and NHTD waivers:

Medicaid Managed Care and Repatriation of individuals served out of NYS

Jason Helgerson, Deputy Commissioner, Office of Health Insurance Programs and NYSDOH Medicaid Director

2:00pm – 2:30pm Coordinated Medicaid Managed Care Program for Individuals with TBI

Joseph Vollaro, PhD.

2:30pm – 3:00pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:00pm – 3:30pm Public Comment/Summary/Next Steps/Adjournment

Mary Ellen Pesci: a woman that mattered

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If a loving heart, kindness, an endless supply of compassion, and an enormous amount of courage were lifelines, Mary Ellen Pesci would have lived forever.  Tragically, for those of us who knew her and loved her and for those who never got the chance to know her and love her, Mary Ellen died this past Tuesday. She was 55, way too young to be leaving this world.

I was only one of many whose eyes flooded with tears at the news that this angel of a human being had died.

Like me and far too many others, Mary Ellen lived with a brain injury.  She got her injury as a result of being hit by a car. Much of her life was rooted in a tenacious devotion to others who live with brain injuries. Her message to us was simple, pure, powerful, and true: you still matter. You count. Your value has not been diminished by your brain injury.

Mary Ellen knew that one of the challenges people with brain injuries face is managing a life in which some people tend to perceive us as somehow being less than we were before, as if, because of our injuries, we don’t matter any more. Nothing could be less true and she knew it. Remarkably, and I do mean remarkably, she was able to drive this message home with patience and kindness, even when faced with  the task of addressing people who talked about and to people with brain injuries as if they were just barely human beings.

She was on the board of both the Brain Injury Association of NY State and the Citizens Advisory Committee for the Town of Haverstraw. She was a consultant for the Traumatic Brain Injury Survivor Group and a facilitator a brain injury support group at Helen Hayes Hospital. On all fronts her compassion, bravery and devotion made its mark.

Mary Ellen Pesci was a woman that mattered, and for those of us who had the privilege of knowing her, she matters still.

 

Sexism on display with the support of silence

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It seems a prominent Rick Santorum supporter and members of the Republican leadership have taken a pledge to do their best to alienate all American women in part by treating them as if they are nothing more than chattel. Many members of both sides of the aisle are supporting this effort by their silence.

In a television interview today with MSNBC’s Andrea Mitchell, Foster Friess, the last living Cro-Magnon man and Santorum backer, addressed the issue of contraception by saying, “"This contraceptive thing, my gosh, it’s so… inexpensive. Back in my days, they used Bayer aspirin for contraceptives. The gals put it between their knees, and it wasn’t that costly." Mitchell was visibly stunned: “Excuse me, I’m just trying to catch my breath from that, Mr. Friess, frankly.”

As if this view of women was not despicable enough, three Democrats walked out of a House Oversight and Government Reform hearing on religious liberty and the birth control rule when only men from conservative religious organizations were allowed to testify. 

I must apologize for calling Friess the last living Cro-Magnon man, he has a sibling, fellow Cro-Magnon man, Republican Virginia state delegate Bob Marshall, who said, "The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children.”

It seems clear to me that the forces or racism, sexism, and bigotry towards the disabled are surging to the surface, and, I suspect, historians and sociologists will eventually conclude that the antecedent to these un-American trends was and is the election of the country’s first black president.

While all this disturbs and sickens me, what disturbs and sickens me even more is the silence of so many elected officials on both sides of the aisle. They would be wise to remember Dante Alighieri’s accurate warning: ““The hottest places in hell are reserved for those who, in times of great moral crisis, maintain their neutrality.”

 

Days of contemplation

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As I begin setting these words down I am listening to Bach’s Brandenburg Concertos, music my father would listen too when he wanted to relax and release the tensions and anxieties of the day. I listen to them now, not just for the same reasons he did, but to bring him close to me. The day my father died my ability to feel safe being me in the world died with him. I was 15, he was 55, way too early on both fronts.

I am inflicting no special form on this essay, other than that of staying with my thoughts and setting them down as accurately, openly and honestly as possible. If I am going to set this down for you to read, you deserve all three elements.

Recently I have been contemplating how best to shape what I currently see as the home stretch of my life. There are certain things I know for sure:

  • I want to write. Not just offerings in this blog and for remarkable publications like the newspaper Independence Today, but short stories and novels and, finally, the completion of a memoir.
  • I will stay involved in advocacy, especially now, when the penchant for budget cuts combined with the forces of greed and out-of-control egos have already done damage and threaten to do more damage.
  • I know that while we have been estranged for some time, the door to my life will always be open to my daughter. I will not go into details here, but no matter the past, there is no person on planet earth that I love more than I love my daughter, not a single one. It would be nice to have time for just the two of us.
  • I would like to travel, though God knows how this will come about given the poverty that currently has me by the throat. But there is time, and there is much I’d like to see: the Grand Canyon (wouldn’t mind living in it as matter of fact), Germany, so I could, finally, make a childhood dream come true and stand in a room the Beethoven was in. And then, of course, England to visit the haunts of Charles Dickens and company, Russia to visit Tolstoy’s home, France to visit all kinds of places including those directly linked to a relative: Jean Jacques Rousseau.
  • I would like to read all the classics ever written.
  • I’d like to break the bonds of PTSD and go outside more than I do.

The current challenge is to find a new home, not easy when you have no money and when your pickings are shaped by rents approved by HUD (Section 8), but, thankfully, not impossible. If I could pick a destination it would be Western Massachusetts. We’ll see, I need to stay open to all reasonable possibilities.

Step one is find a home, then, one day at a time, make the things I know for sure, some just dreams at the moment, come true.