If you’re going to lie to me….

I don’t ask for much in life other than respect, so, if you are going to disrespect me by lying  to me, the least you can do is make an effort to make it a good, show a little creativity for God’s sake.

I’ve decided to rummage around in my mind and, perhaps the minds of others, to develop some fun, at least for me, responses to people who lie to me so brazenly and obviously I don’t know whether to burst out laughing and ask them if they’re joking or simply stupid enough to think I believe them, or smack them upside their “head” with a verbal dagger that says, we both know you’re lying and you’re such a self-absorbed little twit you’re going to stand by your stench-rubbish anyway.

Anyone who knows me knows I have no ability to be silent when someone’s rights are being denied. I don’t care of it’s people with disabilities, people who are Jewish, African American, Latino, Muslim, veterans, members of the LGBT community, women, etc., etc., I’m not about to stay silent. People who know me also know it is very likely, particularly of you are a public official or someone in a position of authority, that I am going to expose your bigotry for all to see. 

All that aside, let me say there is a special place in hell for people whose claim to care about the rights of others is nothing more than lip-service smoke screens. A form of dishonesty so glaringly obvious I want to grab them by the throat and say, “Why not grow some backbone and say out loud that you don’t give a rat’s ass about these people and you just care about money and power?” 

What’s somewhat amusing is the feigned indignity performances I get to see when I call someone out for lying, for being a hypocrite. They put so much effort into their performance (without exception they’re lousy actors) I’m surprised they don’t snort and dribble out of the corner of their mouths, go into convulsions, and start speaking in tongues. Some feign astonishment to such I degree I expect them to allow their simian roots to take over and start pounding their chest.

Many of the lies I see these days  come from those who claim they are committed to protecting the rights of New York residents who live with brain injury disabilities. Since their commitment is limited to the effort it takes to say they are committed, the least they could do is make a commitment to develop their lying skills. I’ll probably catch them anyway, but at least catching them might pose a sliver of a challenge. However, exposing them will not.

So, here’s the thing, if you’re going to lie to me, make an effort, or give us both a break and shut up.

Twenty-Eight Years Ago Today

Twenty-eight years ago today I was held-up on my way to pick up my cab and shot in the head at point blank range. The bullet remains lodged in the frontal lobe of my brain. This is not a depressing day for me, not at all. In fact, as others who have survived similar moments have said, today is a second birthday of sorts.

What is worth noting is that it would be 10 years after the shooting before I would hear the words, brain damage. My experience is not unique. I know people with brain injuries all over this country and many went years before hearing the words brain injury, traumatic brain injury, TBI. Many of us were left to deal with the effects of brain damage not knowing that brain damage was the force behind the problems we were grappling with. We were, in  a sense, managing life blind folded, hands tied behind our back. We did our best, but it is hard to be successful when you don’t know or don’t understand what it is you’re up against.

All this is why it is so important for any state with a brain injury program to make sure those who design an implement the program have a solid working knowledge of the brain.

But this is not my reason for writing this today. My reason for writing this today is to share some thoughts with you. There is little doubt in my mind that you too have faced or are facing challenges that feel as if they have total control over every aspect of your life. I am here to tell you they don’t. They really, really don’t. The truth-telling, right-sizing equation goes like this; because something feels like it has total control doesn’t mean it has total control. It simply means it feels that way.

Believe me, there were times the damage to my brain felt all powerful. There were times too that the idea of returning to life after the combined experience of some kid put a gun to my head and firing and then another guy puts a gun to my head less than nine months later had so much power I did not step foot out of my house for nearly a year.  Were it not for some close friends who were my neighbors at 286 East 2nd Street in NYC, I don’t know how I would have stayed clothed and fed. In time, and with treatment, and the support and love of close friends, I began to reclaim my life and leave the house. 

And then there is this, you have a relationship with life and all the elements that come with life. I have a relationship with my brain injury. I have a relationship with the the Post Traumatic Stress Disorder that is, today, my number one opponent. There are still days I can’t get myself to leave the house. The point is, these relationships are no different than relationships  between two people. They can be healthy or unhealthy. The challenge is this. Don’t let the elements of life that look to impeded your freedom to be you of have decision making power. Relieve them of decision making power every chance you get. There may be times you can’t. Okay. Relax. Don’t worry. Get some sleep, wake up the next day,  do your best.

The last thing these life-impeding elements deserve is to be behind the wheel of your life. That is your rightful place.

Thanks for listening. Take care of yourself. Remember to live.

Silence from New York’s DOH

A letter to a DOH official asking her to investigate how several million dollars of state taxpayer money has been paid to a project run by New York State contract employee Timothy J. Feeney who does not have the credentials he says he has has been met with silence.

A July 25 letter to Patricia Greene Gumson of the New York State Department Health has gotten no response. The letter, copied to others in and out of the DOH, asked Ms. Gumson to investigate how it was that Timothy J. Feeney received three five-year contracts with the DOH despite the fact he misrepresented his credentials. Was there a vetting process and, if so, what was it? It is critically important for the readers of this blog to avoid villainizing the DOH as a whole. There are quite a few honorable people working there and straightening things out while dealing with the ineffable web of bureaucracy is no easy task.

However, Mr. Feeney himself indicates that some in the DOH knew about the problems with his credentials. According to unsolicited e-mail this year to readers of my blog, some in the DOH knew Mr. Feeney did not have the college degrees he claims to have. In his e-mail, Mr. Feeney said, “The Department of Health, the state office responsible for the Neurobehavioral Resource Project, is well aware of my educational history, the source of my (college) degrees.”

For nearly 15 years now Mr. Feeney has headed up the Neurobehavioral Resource Project for New York State’s Traumatic Brain Injury Waiver. The Project is arguably the most powerful influence on the waiver across the state. There can be no argument  that the TBI Waiver is a blessing to the state and desperately needed as it affords many with brain injuries to live in the community. However, there can also be no argument that survivors of brain injury, their families and other loved ones, along with the hard working companies that provide waiver services across the state have a right to expect people to be who they say they are.

As readers of this blog already know, Mr. Feeney claims to have a PhD and Masters degree when he has neither one. The letter also asked Ms. Gumson to look into how it was that none of the three contracts that some might see as jerry-rigged didn’t require the person heading up the Neurobehavioral Project to even have a master’s degree.

In short, Mr. Feeney’s degrees were received from Greenwich University, a diploma mill located in Hawaii and California in the 1990s before moving its operation to Norfolk Island off the coast of Australia. Degrees from Greenwich have never been recognized as valid in the Australian mainland and have never been recognized as valid anywhere in the United States of America. Greenwich, not to be confused with the prestigious University of Greenwich in England, closed its doors in 2003.

Brain injury survivors, the families and other loved ones as well as waiver providers across the state deserve answers. Here are some but not all the questions that ought to be answered.

How productive has the Neurobehavioral Project been?

  • Are referrals to the project responded to, completed, and followed up in a timely manner?
  • How many admission holds were placed on Waiver Providers across the state at the direction of Mr. Feeney? 
  • How many survivors were tossed off the waiver by Mr. Feeney?
  • What has Mr. Feeney and the Project’s impact been on Medicaid dollars?
  • How many Medicaid dollars were spent based on the reasonable belief that Mr. Feeney was Dr. Feeney?
  • Would any Medicaid dollars been saved had Mr. Feeney not represented himself as Dr. Feeney?

Another letter to a DOH official way up the ladder is on its way and has been copied to a wide range of people. I have faith that the DOH will do the right thing. Mr. Feeney’s contract expires the 30th of this month. Were it to be renewed, or were some maneuver like awarding the contract to a company who would then hand leadership over to Mr. Feeney to happen, more folks would need to be taken to task.

It is hard enough living life with a brain injury, it is hard enough adjusting to the reality that a loved one has a brain injury, and it is no easy task providing quality services to those who live with a brain injury for providers who try to keep their companies afloat despite low reimbursement rates. To manage all these challenges only to find out one of the most influential entities in the state is not who they say they are is not only unjust, it’s immoral.

Living With Brain Injury – Part V: Where Are the Employees?

It would be interesting to learn how many people living with brain injuries are in management positions  in the companies providing services to people with brain injuries living in the community. Not many. I can think of one provider that has an individual with a brain injury in a management slot.

The last company I was affiliated with was the Belvedere Brain Injury Program in Albany, New York, and, sadly, in Syracuse too. In the end, not a pleasant experience. Once their substance abuse program got underway and a plethora of survivors began to complain they were being denied their right to choice, I began advocating for them. I was soon told to leave.  I have no reason to believe conditions have changed and  no one running the show  has a brain injury. But this affront aside, the larger picture begs the question, how many people with brain injuries are in management positions in companies like Belvedere? Given that the answer is hardly any, the next question is,Why not?

Is one of the reasons why not may be that many still cling to the belief that those who live with brain injuries can’t do the work? Not so. Bob Woodruff, as good and decent a man as God ever created, lives with a brain injury and is back at ABC News dazzling in his work as always. Is another reason that some companies know that someone with a brain injury might not take kindly to the way survivors are treated by the company?  It’s kind of like creating a group of companies to provide services for veterans and not having any veterans on staff.

Keep in mind, there is such a thing as warehousing in some community-based programs.

Wouldn’t you think that any company providing services to people living with brain injuries would work hard to  get  people with brain injuries on staff because, deep breath now, they might be well suited to tell you what it is like living with a brain injury and thus help you design a more effective program?

Perhaps I’m not the one to ask. After all, I have a brain injury.

Living With Brain Injury – Part III: The Isolation Challenge

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.