Tag Archives: Belvedere Brain Injury

Ramblings From a Writer & Advocate

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My blog “pen” has been still for a time now and I am pulled back to this page because I feel a kind of welcome connection to the more than 1,500 people that read this blog every month. Any writer not humbled by that kind of attention is a fool. And, I’ve missed you all.

I’ve been fairly active. I’ve written three short stories recently and am, dare I say it, fairly pleased with them. I eyed the possibility of trading in my car for a new one and was reminded that if  you want honesty in your life, you’re not likely to find it in a car dealership.  But most on my mind, at the moment, is a recent presentation by several healthcare providers claiming to be experts in helping those who live with the dual challenge of substance abuse and brain injury. I don’t know all the players but two of the presenters were Albany-based Belvedere’s Brain Injury Program and Northeast Center for Special Care in Lake Katrine, New York.  One of the people from Belvedere explained that Belvedere’s counselors have sessions with survivors in their cars for privacy.

Those I talked to who attended were not only not impressed, they were horrified. Survivors of brain injuries were referred to as “those TBIs” – TBI stands for Traumatic Brain Injury – and one presenter said a survivor he knew had been a garbage man before his injury and so was probably special ed anyway.  No matter how you hold that disgusting observation up to the light, it is packed with bigotry. Survivors were talked about like they were products and, well, less than human.

Do these fools not realize that when you say all TBIs you’re spewing the same kind of bigotry as the voices who say all Blacks or all Jews or all Latinos or all gays or all lesbians? And don’t miss that the people who offered these presentations were picked by their company owners and leadership to represent their companies and, one would suppose, their views. Troubling, very troubling.

Anyway, it is good to be back. More soon. My best to you all.

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Caring for Appearances and $ Only

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I have lived with a brain injury for more than 25 years now as a result of being held up and shot in the head in 1984. Since then I have met people who care and don’t about those of us who live with brain injuries. I’ve also met those successfully manipulate many, myself included, into believing they do care when in fact they don’t.

I can tell you from firsthand experience that those who work for the Brain Injury Association of New York State care with all their hearts and souls. They have helped me through some tough times over the years and I can honestly say I love the people who work there. I am proud to be a member and would tell anyone who lives in New York they are making the world a better place by becoming a member.

I know people in the New York State Department of health who care with all their might. I recently met with two DOH official who care and then some, so be careful not to write off government agencies and or employees as being absent compassion and caring. Moreoever, I know healthcare providers in my state and other states care with all their might.

I also know healthcare providers who don’t care. Who see us as a means of making money and or as a means to inflating their dysfunctional egos by seeking to and, in too many cases, succeeding in controlling our every move.

In my years of working with people with brain injuries I have worked with two company owners who both put on quite a show of caring. One, who has since passed away, I’ve come to realize really did care. Sadly, very sadly in fact, his personal demons got in the way of his acting on his compassion in a healthy way. The second owner continues to put on quite a show of caring but in fact continues to operate a program in which participants rights are too often not respected.

I was forced out of the latter owner’s place because I would not be quiet when I saw people with brain injuries being denied their rights. Do I hate this owner or the one referenced earlier? No. I hate the latter’s behavior and feel sorry for the arrogance that blinds him to the fact life happens to him too whether he likes it or not – just like the rest of us. Were he wounded in life, I’d help him.

Anyway, one day at a time.

I’ll continue to expose those who misstep on the human rights front and support those who don’t, and, thankfully, there are many people in the latter group.

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

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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.

Breaking Mountains

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It is time to come alive again and break me some mountains.

It has been my history to take on what for me are formidable physical challenges in response to life’s meaner blows.

Many years ago for example I joined and went to the McBurney YMCA on 23rd Street between 7th and 8th avenues in New York City almost daily as a way of breaking free of a year’s seclusion. A seclusion I’d gone into after being shot up and held-up at gunpoint in a matter of months.

Years later I would run two marathons in two weeks as a response to my mother’s 1992 suicide. I am a slow poke and with six marathons under my belt I’ve never run one under five hours.

And then there was the 175-mile bicycle ride in 2003 and the 1,000-mile bicycle ride in 2004 to strike back at my own brain injury and give hope to any and all who’ve sustained brain injuries or been beaten-down in any way by life. I did those rides while working for the Belvedere Brain Injury Program based in Albany, New York. I am not linked to Belvedere anymore for reasons I won’t go into – for now – bit I can tell you I wouldn’t recommend the program to a cadaver, much less a living being.

The year 2008 was in many way one of the most brutal I’ve been through in a life that by any standard has had its fair share of brutal years. As I’m sure you, my dear reader know, when life knocks you down you find out quick and certain who your friends are and who are, well, full of shit.

For me 2008 and some of 2009 was cement-thick with depression. A kind of physical immobility took place, I had been frozen still by life, largely as a result of treatment inflicted on me by the above mentioned Belvedere, more specifically, its owner, John Mccooey. My days would consist of staying tucked under blankets, sitting at the computer trying to write, reading, watching movie after movie, and, other than a weekly workshop I would facilitate with some extraordinary people, and attendance at meetings linked to a 12-step program I belong to, that was a out it. The all of me had grown still.

Like a slave breaking free of chains and shackles, I have begun to break free in the past few months, so much so I plan on breaking mountains. Let me explain. Back when I was getting into the intense bicycle riding I named the task of reaching the top of a steep climb, breaking hills. I’d see a steep climb coming up and say, I’m breaking that hill.

And so it is with mountains. There is the 3500 Club in the Catskills, a club you become a member of when you climb all 35 of the 3,500 foot or more mountains in the Catskills. Four of them you have to climb twice, once in warm weather, once in winter. I began this quest a few years ago and plan on resuming it in three weeks.

Next, or maybe even along with, I will take a run at being a 46er, someone who has climbed the 46 highest peaks in the Adirondack Mountains.

I will call the task of reach summits, breaking mountains. Like I said, it is time to come alive again, and break me some mountains.

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