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.

Mary Ellen Pesci: a woman that mattered

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.

 

The Cost of Advocacy

Before I get started here, let me say that nothing but the end of my life will stop me from advocating for every person’s inalienable right to equal rights. Okay, now that we’ve got that out of the way, let’s begin.

It was early 2008 when I found myself in the Hannaford Supermarket talking with my friend, Eric. It was not long after I’d had all my workshops for brain injury survivors slammed to a halt and my income removed on a dime because, in short, I would not turn a blind eye or remain silent when witnessing people with disabilities, in this case brain injuries, being denied their rights and treated as if they were nothing more than wayward children.

How you doing?” Eric asked. Eric, I should say, is someone I worked with for years and a man I genuinely love like a brother.

I’m alright,” I said, “When I get really down I think about King and Gandhi and Medgar, and given the fact they were assassinated, I’m not doing too bad.”

Sounds like you were assassinated,” Eric said. In a way, I knew he was right. I also knew I was alive and could and would continue advocating for people being denied their equal rights.

During this time I’d begun looking into rumors that a man who headed up a neurobehavioral project for the New York State Department of Health did not have the credentials he said he did. In time the investigation would reveal the rumors were true, he was claiming to have college degrees he did not have and had been presenting himself as this in his job for the state and in his private professional work for well over a decade.

Now the thing about investigations, an honest following of the facts, if you will, is sometimes what gets uncovered bruises people you like and care about and or leads you to discover people you thought were totally honest and honorable were not that at all. If you are wedded to the truth, you keep going, because, if you are an advocate, you know your work is not about you, it is about the ongoing effort to make sure all people are given their equal rights, period.

I lost a friend as a result of the above referenced investigation. A man who was, in my view, one of the best and most seasoned advocates I know. Still is, I am sure. However, people he cared about were wounded as a result of what I uncovered. I can’t help that and certainly didn’t intend that. I also can’t help where the facts led. If people knowingly took part in a process in which survivors of brain injury, their families, and healthcare providers were being misled, there are consequences. Can’t and won’t help that either.

But here’s the thing. The pain or wounding I’ve endured and the pain and wounding my honorable friend endured are nothing in comparison to the pain and wounding people with disabilities live with day in and day out when they are being treated like they are little children or being denied their equal rights. Which is why I will keep on advocating and I know my friend will too.

For those wondering who my friend is, I will never tell you. Why? Because he is a good and honorable person who, like me, is imperfect, and I’ll be damned if I am going to wound him because a moment came along in his life when his loyalty to a misguided person he loves blinded him to the greater good on the advocacy front. After all, like me, he is only human, and is allowed the imperfections that come with that condition. After all, he has equal rights too.

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.