What will not be

I have reached the time in life when I am beginning to understand and accept some things will likely never be. I have come to believe, quite firmly in fact, that by accepting what will not be we are freed to accept what is and what will be.

Certainly accepting some of the things that will not be means experiencing sadness and, in some cases, loss, neither a particularly pleasant experience; but life is not ended by these experiences, nor is its value diminished. I accept, for example, and have accepted for some time now that I will never again have a relationship with family. Although I did not realize it nor see it coming at the time, my relationship with my family ended the day my father died. I was 15.

However, I have a friendship closing in on 40 years with Michael Sulsona; we are actually brothers at this point. His sons, Vincent and Philip, grew up calling me Uncle Peter and in my heart and soul they are my nephews.  And while I would have weathered the storms of life, Michael’s presence and the presence of his boys have made managing the storms a lot easier. I love them with all my heart. I am blessed.

I have come to believe too that at this point it is unlikely I will ever have the relationship with a woman that I’d like to have; one deep-heart committed under the same roof sharing the daily strides of life. There are few gifts in life more wonderful than waking up next to the person you love. But love and relationships have many forms, they are not cookie-cutter made, even though we are raised by well-intentioned misguided folks to think so. Once we gently disengage from that myth we are free to love in ways we  never thought possible.

And then there is my writing, the part of myself I am closest too. Getting a book published is not all about quality writing. What gets published proves that. Hell, while The Da Vinci Code had a good story line, it was some of the worst writing I’ve ever encountered; the only cliché the book left out was It’s quiet, too quiet.

When it comes to my writing, my job is to  write one piece of work at a time, send them out when they are complete, and then get to work on the next peace.

Life is good, not always easy, but good. Remember (please) that accepting what will likely not be will free you to experience what will be. And hey, when you notice you’re there when you wake up in the morning you know things could be a helluva lot worse.

Memo to BIANYS board and TBISCC members

The leadership of my state’s Brain Injury Association (BIANYS), Traumatic Brain Injury Services Coordinating Council (TBISCC) and the Department of Health are all fully aware of the damage being inflicted on the lives of brain injury survivors throughout the state by the aforementioned DOH and, because of their silence (complicity), the brain injury association and the council.

The BIANYS board of directors and the members of the TBISCC need to dump their “heads of state” and get the bows of both ships pointed in the right direction – a direction that really does advocate for brain-injured New Yorkers and, in the case of BIANYS and others,  not simply use those of us with brain injuries to fill their coffers and inflate their egos.

This September 12 the TBISCC will meet and have some presentation from Mt. Sinai Medical Center (which is all well and good but history shows that all the presentations given to the council over the years have not translated into a single proposal by the council to the DOH; feel free to email me and I will send you all the council minutes if you find this hard to believe) and then they will discuss a concussion bill which is important but they will not say a thing about the brain-injured New Yorkers having their TBI Waiver services cut or being discharged off the waiver altogether, nor will they say a word about waiver participants who are having their housing subsidies cut or ended putting some at risk of homelessness and death. A federal judge protected one life when he stopped the DOH from throwing a brain-injured senior out of her home and asking her for $24,000 in the process.

BIANYS and the TBISCC have been dead silent on all this, yet on September 12th there council chair Michael Kaplen will sit in all his pompousness and there Judith Avner the BIANYS executive director will sit in all her feigned righteousness and both will claim straight-faced to care about those of us who live with brain injuries. If either cared they would not be silent about the matters mentioned in this particular missive, but they are. The DOH’s Maribeth Gnozzio may or may not be there, but if the DOH actually cared about brain-injured New Yorkers Gnozzio would not even be in the picture. All three of these folks seem to be tiny-minded narcissistic control freaks and in the long run, are no more important than bird droppings on a windshield (my apology to the bird population).

The challenge contained in this blog piece is to BIANYS board members and council members. Do your leaders truly represent where you yourself stand when it comes to brain injury survivors? Are you really comfortable with the fact neither group holds the DOH accountable nor does either group live up to its mandate? Are you truly comfortable with the silence both groups exhibit in the face of the DOH’s brutality to those you claim to care about?

For example, I would urge BIANYS board members to carefully review the ebits the organization sends via email to its members. Look at the advocacy section in each and you will not find one example of BIANYS advocating for anything other than giving its support to the concussion bill.  I would urge council members to ask for and review council minutes over the years and see if you can find a single example of a proposal by the council to the DOH. Email me at peterkahrmann@gmail.com and I will send them to you. I will also keep your identity private unless directed otherwise. I’ve already talked with some in both groups.

I would urge members of both groups not to fear Avner’s anger nor Kaplen’s for that matter. Kaplen’s bellicose behavior would be rather funny were it not so disrespectful to colleagues and those he claims to care about. Hell, there was a time Kaplen represented me in a lawsuit against the state’s Crime Victims Board which, at the time, was trying to stop reimbursement for any and all phone therapy sessions for crime victims. Kaplen will claim he was the only attorney willing to help which was not true, he offered to help and in the process and tried to get the state to pay him $500 an hour for his efforts (he was helped free of charge in those efforts by others, by the way), money that had the judge not rejected his request, would likely have been taxpayer dollars. I asked Kaplen to speak with me first when the ruling came in so we could discuss how to release it to the media.

Can you guess how I found out the judge ruled in our favor? From a reporter, a reporter Kaplen had called and bragged to. It was then I called and left Kaplen a voicemail message explaining that he should feel a sense of joy that he had not taken this liberty, say, 25 years earlier, because in those days I would’ve simply taken him outside and kicked his ass.

While there will always be Kaplens and Avners and Gnozzios among us, there will always be Kings, Mandelas, Gandhis, Wiesels, Wiesenthals, Darrows, Greers, Steinems, Father Mychal Judges, and more. The question, therefore, is this: are there any of the mindset reflected in this latter group that are on the BIANYS board and the council? If there are, then the days of Kaplen and Avner should be short in number.

Living the day I’m in

Music jazz shape-shifts my morning and the daylight gently takes over the sky, and this day I know is well worth living. Yours too.

There are problems galore in life, some changing shape daily, some seem to cling, some flit and leave, but none take the life found in today, the day I’m always in. You too.

For me it’s Bruce, Beethoven, Jazz, Beatles, Dylan, and then some. For me it’s Dickens, Steinbeck, J.G. Farrell, Dos Passos, Garcia Marquez, and then some. For me it’s dawn breaking, thunderstorms, birds (all of them), a fawn drinking from mom across the way, wild turkeys pride-waddling ‘cross the yard, the soul-sound of a Red Tail Hawk, and then some. For me the all of life in my day makes my heart sing. Yours too.

And then of course the loss lived with, people gone physically forever (far too many, too many), days and times gone by, but all alive in my daily strides and lifted chin, and the gift of tomorrow which will always be me in the day I’m in. You too.

And so each day is always today a gift I know and am grateful for; it easily might not be here. And so, smiling at my presence in the moment I’m in, remembering to live. You remember too.

End the Kaplen-Avner Show

It will surprise no one to learn that New York State’s Traumatic Brain Injury Services Coordinating Council and  Brain Injury Association (I am almost repeating myself) are ignoring requests to look into the bogus complaint line for the TBI Waiver and investigate a state Department of Health’s directive blocking waiver providers from advocating for their clients at Medicaid Fair Hearings. It is sadly not surprising that the requests had to be made in the first place.

As readers of this blog will recall, the DOH never tells complainants the outcomes of their complaints. BIANYS, under the leadership of Judith Avner and, historically, of Michael Kaplen, entered into a contract with the DOH to answer complaint line calls knowing full well complainants are never given the results.

As long as council and BIANYS leadership are not held accountable by their members and, in the case of BIANYS, the board of directors, nothing will change, and the lives of brain-injured individuals in the state will continue to suffer for it.

Why are the requests being ignored? Because, if one agrees that actions speak louder than words, the leadership of the council and  the brain injury association (again I am almost repeating myself) don’t really care.  In fact, a July 5 publication in this blog reveals that the TBISCC has failed miserably to live up to its purpose which is, in short, to provide proposals to the DOH to best serve brain injury survivors in the state.  The only thing that falls into the category of a proposal is a proposed trust for brain injury survivors in the state that would also benefit the brain injury association.  Avner displayed some of her true colors by voting for the trust fund anyway even though doing so clearly violated the public officer’s law which council bylaws require members to follow.

Council chair Michael Kaplen’s penchant for self-aggrandizement  and adding cases to his legal coffers is well known. I remember a yearly best-practice brain injury conference hosted by the state’s Department of Health (they were around 2003 or 2004 when some of us noticed that Kaplen had deposited business cards from his law firm on every table in the conference; at the time he was president of the state’s brain injury association and then and now Judith Avner was the association’s executive director. A few of us went around the room and removed them.

Avner, on the other hand, is dazzlingly skilled at lip service. I’ve walked away from meetings with her thinking brain injury survivors are lucky she is around only to realize (at greater speed as the years have passed) that she didn’t commit to a thing, didn’t agree to a thing, and, above all, made sure BIANYS did nothing that even remotely held the DOH accountable.

One would like to think Avner and Kaplen would, in their heart of hearts, feel guilty for repeatedly letting brain-injured individuals down; but feelings like this require a conscience, something both  seem to be running short on.

As a friend of mine said recently, there needs to be a grassroots uprising in order to address the Kaplen-Avner show and, let us not forget the non-responsive Maribeth Gnozzio of DOH Fame. Perhaps it might be interesting to conduct non-violent protests at the homes of all three. It’s been too long since protests like this have surfaced in Chappaqua, Delmar and Tannersville.

Here is the agenda for the TBISCC Council meeting  September 12.

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

Empire State Plaza, NYS Museum Meeting Room A

(Concourse level of NYS Museum)

Monday, September 12, 2011

10:30 AM – 4:00 PM

AGENDA

10:30am – 10:45am Welcome

Review and Approval of Minutes from June 20, 2011 Meeting

10:45am – 11:45am Kristen Dams-O’Connor, Ph.D., Screening for Concussion in Collegiate Athletes, Brain Injury Research Center, Mt. Sinai Medical Center

11:45am – 12:45pm Brian Greenwald, M.D., Medical Director, Brain Injury Rehabilitation Program, Mt. Sinai Medical Center

12:45pm – 1:15pm LUNCH (members on their own)

1:15pm – 2:15pm Todd Nelson, Concussion Management Information/Guidelines, New York State Public High School Athletic Association

2:15pm – 3:15pm Discussion of Concussion Management and Awareness Act  (S. 3953-B)

3:15pm – 3:45pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:45pm – 4:00pm Public Comment/Summary/Next Steps/Adjournment