Monthly Archives: July 2009

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.

The Courage to Love

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Maybe I am a foolish dreamer but I believe love – real love – is very likely the greatest gift life offers us. I think if you are afforded the possibility of real romantic love you are, well, a fool if you allow things like a single tattoo (which I don’t have) or facial hair (which I do have) to be deal breakers. You are equally foolish if you let the size of a woman’s breasts or the length of her legs guide your decision making.

It seems to me many have a plethora of reasons, some conscious, some not so conscious, for avoiding real love. What is his or her schooling? Have they been to college? What did his or her parents do for a living? She or he has a child already? He or she has been married before? She or he is five feet tall? Six feet tall?

It doesn’t take a genius to figure out that the human species is ineffably gifted at coming up with reasons to avoid real love. I remember many years ago going out with a woman for a brief time. We liked each other and all was going well and one evening over dinner she said, I’ve been meaning to ask, what sign are you? Not seeing the bear trap on the ground in front of me, I said, Libra. A look of unutterable horror came over her face. Oh Peter, she said, in a tone so troubled you’d have thought every one she knew just died, We don’t get along. Instantly realizing I was facing a mountain that called for oxygen tanks to summit, I said, What the hell we been doing up to now? She shook her head, put her fork down on the table and said, I should go. I agreed. She left. I finished my meal.

Now I know there are underlying reasons for why we run from or avoid the possibility of love. Nearly always these reasons are found in the soil of our histories. We’ve been wounded before, we’ve been betrayed before. We’ve turned our hearts loose before only to have them gutted. In some instances we were raised in ways that taught us we weren’t much worth loving. So, if you find yourself falling in love, or faced with the possibility of falling in love and being loved, just think, if you run, your history wins – again. Your history does not deserve that kind of decision making power. You do.

Living With Brain Injury – Part IV: Those Around Us

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When you face the challenge of a brain injury in life, there are several things you should be able to count, from those who love you and from those whose job it is to help you manage the injury: respect, equality, dignity, honesty and the best treatment available. What you do not deserve is disrespect, condescension, dehumanization, and dishonesty. Tragically, there is far too much of the latter.

Let me say at the outset that there a lot of things my state, New York, has right. It has a TBI (Traumatic Brain Injury) waiver, a form of medicaid reimbursement that provides services so some with brain injuries can live in the community and, in some instances, return to living in the community. There is no question that more people with brain injuries are living in the community as a result of the waiver.

However, there are problems, and while the problems might understandably call for finger pointing, finger pointing rarely gets us anywhere. The waiver is overseen by the New York State Department of Health. The TBI Waiver manual is a nice document, it says the person with the brain injury is the person who drives their treatment plan, or service plan as it is called in waiver parlance. Sometimes this happens, sometimes it does not. But the waiver is well thought out on this front.

What appears to be lacking in the waiver manual are regulations. There are guidelines for sure, but they are accompanied by a paucity of regulations, and that is troubling.

One thing I am sure of is this. For any therapeutic environment to be as effective as possible, it needs to be an emotionally, spiritually and physically safe place for the person getting the care. Key to this safety is, among other things, honesty. That the people who treat you or influence your treatment or the rules governing your treatment are who they say they are.

One problematic case that does call for finger pointing is the case of Timothy J. Feeney. Feeney has been a contract employee with the NY DOH for on or about 15 years and continues to refer to himself as Dr. Timothy J. Feeney when he is nothing of the sort. By his own admission, both his PhD and his Master’s Degree were obtained from Greenwich University, a non-accredited school that enriches countless diploma mill lists on and, I would imagine, off the web. On a resume of his provided to this writer by the state, Feeney openly lists Greenwich University. Greenwich U was a diploma mill that operated out of California and Hawaii until 1998 when it moved to Norfolk Island off the coast of Australia. It closed its doors and 2003. There is an Australian Government Alert available on the web that makes it clear Greenwich was not a recognized university in that country.

However, do not be quick to villainize the NY DOH in its entirety. Feeney’s contracts, also provided to this writer by the state, do not require he have any degree to head the neurobehavioral project for the DOH. One has to wonder who wrote the contracts? It is, I think, reasonable to assume that there are those in the DOH who are good and honest people who may inherited this hot potato.

The bottom line is this. Learning how to manage daily life when you live with a brain injury is hard enough. It becomes even harder when people aren’t honest with us. Any value they may actually have is entirely undermined once their dishonesty comes to light.

The Sweet Taste of Morning

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The first hour, the delicious sounds of birds singing, the light only just making its way into the day, water on for that exquisite first cup of coffee. This morning the ground wet from through-the-night thunderstorms, more glory! A look through binoculars at the vegetable garden (don’t want to miss anything), smiling at the sight of newborn tomatoes. From nothing but a seed they are? Well then, aren’t we all?

Then it comes, that familiar unwelcome chill of fear, a feathery slightness to it, momentary. I am in my home, the place to be. Water ready now, coffee made. This morning in my Hummingbird mug. My father and I deciding so many years ago that Hummingbirds are signs of good luck. The feather touch of fear still there I go stand by my books and the fear, like a frightened animal, flees. The comfort of books, the comfort of books runs so deep. All of them are my friends, with me always, each there own world living safely in my home. Good company always.

And I know this sweet tasting morning is extra special. I am seven years sober today. I am alive and I am me, fully me savoring the sweet taste of morning. It doesn’t get any better than this.

Fury Over the Lost PC

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On my writing table is a bust of Beethoven, a childhood hero of mine. He once wrote a short piano piece of fury and heartbreak called Fury Over the Lost Penny. It’s not a long piece but there is enough fury and heartbreak in it to last a lifetime. He wrote it after a coin he’d set aside for food fell into his piano and was lost forever. Well, that is how I feel this morning. My PC has crashed, crashed to the point it will not even boot up. I get these warning signs saying more damage will be done if Windows allows it to boot up. Been a long time since I’ve had an overwhelming urge to break any, well, windows.

Being on a fixed income this event is, in a word, a disaster. Worst of all, I’d just begun writing a piece that I fear is lost forever. All my other writing is saved, thankfully, but this piece I fear is lost and I loved it, as I love all the things I write, even when they suck, and most do. I’m writing this feeble piece on what can best be described as a Model T Laptop.

Lousy morning. The good news is I will be sober seven years tomorrow and don’t think I don’t know I’d be handling this a lot differently if I wasn’t sober.