It’s never too late

I recently ran across a wonderfully uplifting quote by Victorian writer George Eliot (Mary Anne Evans): “It’s never too late to be who you might have been.” And that, my dear reader, is very much the template (I wonder what Ms. Evans would think about this last word) for the next phase of my life.

One of the things few understand about living with a brain injury is that one’s relationship with the injury, the brain damage, is not a fixed thing. Living with a brain injury is, in a very real way, living with an influence that is in perpetual motion. This, of course, requires perpetual management of the injury. And so, for me, fatigue is more of a factor than it was, say, when I suffered my injury early one overcast summer morning in 1984. I’d been held-up and shot in the head at point blank range. I was 30. For some years following this, once I returned to work, I was able to work, 40, 50, 60 and more hours a week. But, as I said, a brain injury’s role changes. On our about 2005 or so, my ability to work regular hours came to an end.

Do not, for a moment, think I am saddened by this; I am damned glad to be alive to do anything.

The thing is, when fatigue is a factor, like it is for me, one needs to be selective about where one invests one’s energy. For me, for now, it will be invested in writing. If I am offered a speaking engagement or asked to conduct a standalone seminar or presentation of some kind, I’d be inclined to accept (depending, of course, on the issuer of the invitation). I will also keep my “foot” in the advocacy arena. But, writing will be the focus, quite possible for the rest of my life.

Why writing?

At first glance, not an easy question to answer. Perhaps the closest I can come to answering the question accurately is this: writing and books have been my constant companions for as long as I have memory. I have several boxes (this is not an exaggeration) filled with journals I’ve kept over the years. As for books, well, let me just say that I recently donated something in the neighborhood of 15 boxes of books to the Salvation Army leaving me with something along the lines of 45 boxes that are waiting for me to unpack them.

Now that I think of it, the answer to Why writing? is actually simple and obvious: I can always go there. So it is with books. They always give me a place to go.

My life has taught me something about loss. The unbiased hand of death plucks people from our midst, often without warning and, equally often, without any damned good reason I can think of.

And then, of course, life too happens to each of us whether we like it or not. I was not planning on getting shot and living with a brain injury. I was not planning on experiencing homelessness when I was in my teens and I know damned well I wasn’t planning on enduring the suicide of my mother and, perhaps the most savage blow of all, I was not planning on my father dying when I was 15. Hell, when I was 15 I was dancing a principal role with the Joffrey Ballet and was expected by the ballet world to have a stellar career as a dancer. But, my father died and 16 weeks later my mother placed me in reform school and all that had been came to a crashing end, including my life with a family. But! I could always write what I was thinking and feeling and I could always find a book to read. Because of them I always had a place to go.

And I would not be denied.

When I was homeless, or lived on the streets as we called it then, I became dazzlingly skilled at stealing paperback books off the rotating wire racks in pharmacies; not an easy task when one considers that one feature factored into the design of each and every one of those wire racks was that they emit a loud squeak when turned. I could tell you I’m sorry  I stole all those books but this has been an honest essay and I see no reason to change that.

Anyway, this is enough for now. I have to go somewhere (this is where you smile).

Some thoughts on NY State’s TBI Council

For several reasons, immoveable objects all, I will not be able to attend the meeting this Friday of the New York State Traumatic Brain Injury Services Coordinating Council (TBISCC). Given this, I thought I might offer a few thoughts about the council (the council agenda will be presented at the end of this missive).

There is no doubt that the TBISCC, were it blessed with healthy leadership, could play a very healthy role in the lives of New York State residents who live with brain injuries. There is certainly no harm, nor do I think anyone in the state’s Department of Health would be upset, were the council to live up to its mandate and offer healthy proposals so that the state might better support the right of those living with brain injuries to live as independently as possible.

In order for this to happen, the council must free itself of the self-absorbed rather unpleasant likes of Michael Kaplen. As an earlier piece in this blog explains, Kaplen’s term on the council expired in 2004 . This fact has not stopped Kaplen from acting as the council’s chair.  The council’s vice-chair, Judith Avner, saw her term expire in 2003, yet she too remains on the council.

Kaplen and Avner are wrong to continue in their current posts when their terms have long since expired. Council members need to step up and address the issue. This writer, as readers of this blog already know, thinks Kaplen needs to leave the world of brain injury altogether, the sooner the better. However, the council would benefit from Avner’s continued presence as a representative of the Brain Injury Association of NY State. She is their executive director. While I do not think BIANYS members ought to be on the council proper since BIANYS receives funding from the New York State Department of Health, I think it is critically important that BIANYS have a firm seat at the table as a non-voting council member, much like various state agencies do.

There are some good people on the council and, though we’ve clashed from time to time, there are some good people in the NY State DOH. This next meeting will be a litmus test for all. Will they allow Kaplen to just push on forward as if he is still the chair and say nothing? Or, will they hold him accountable, and dismiss him from the council, or, document he has been reappointed by God knows what fool, and then hold elections for the chair and vice-chair of the council?

If the council acts as if its business as usual, and Kaplen is allowed to remain at its head, then every single person in the room has brutally betrayed the very people they are pledged to serve, New York State residents who live with brain injuries and their families and friends.

 

 

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

875 Central Avenue, Albany, New York

(Main Conference Room)

Friday, April 20, 2012

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome

Introduction of New Member

Review and Approval of Minutes from

September 12, 2011 Meeting

10:45am – 12:00pm New York State Five Year TBI Action Plan

Carla Williams, Deputy Director, Division of Long Term Care, NYSDOH

12:00pm – 1:15pm LUNCH (Members on their own)

1:15pm – 2:00pm Impact of MRT proposals on TBI and NHTD waivers:

Medicaid Managed Care and Repatriation of individuals served out of NYS

Jason Helgerson, Deputy Commissioner, Office of Health Insurance Programs and NYSDOH Medicaid Director

2:00pm – 2:30pm Update on Stakeholder Committee Discussion of Coordinated Medicaid Managed Care Program for Individuals with TBI

Joseph Vollaro, PhD.

2:30pm – 3:00pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:00pm – 3:30pm Public Comment/Summary/Next Steps/Adjournment

Memo from a man with a brain injury: Who is listening?

This month is national brain injury awareness month and I wonder who is listening? Who is listening to us? To those of us who are actually living with the injuries? Never enough people, I can tell you that.

I have lived with my brain injury since I was held up and shot in the head in 1984 and I’ve worked in the field of brain injury since 1995. There is nothing unique about my experience when I tell you that it was 10 years before anyone every said brain injury to me. There is also nothing new in my pointing out that there are still too many folks who see us and treat us as if we are less human than we were before we were injured. There are those too in the field of brain injury who see each of us as a cottage industry, a way they can make as much money off us as possible by inundating us with services while never bothering to learn a damned thing about the brain in the first place.

There are those too, those poisonous messianic types, who treat us as if we are nothing more than some bacterial presence in some petri dish to experiment with. I heard of one program director from Kingston, New York way who told the wife of a man with a brain injury that there needed to be a funeral to morn her husband’s death so he, this slimy a program director, could lead the effort to recreate him. Didn’t matter to this cretin that the husband was sitting right there in the room listening to this, once again listening to yet one more person talk about him like he wasn’t even there, like he wasn’t even human.

The craft, and working with those of us who live with these injuries is exactly that, a craft, is, from a historical perspective, a new one. There are some remarkable people and some remarkable providers in my state and elsewhere who are trying with all their might to do their best by us. God bless them all. They are not only up against the newness of the task, they are too often up against regulators who don’t include them, or us for that matter, in the design and implementation of the services. Some of these regulators are truly well-meaning and some don’t give a damn. But it is like that on all fronts in life. Some care, some don’t.

For those who do give a damn, and there are quite a few of you, there a few things to remember. First, a brain injury is not a fixed being. It is in constant motion because it is a brain injury. It is one experience when we are rested, another when we are tired. It is one experience this year, and another experience the next. The role my brain injury plays in my life now is very different than the one it played a few years ago. It is hard enough to live with these damned things, don’t make it harder for us by treating us like we are less human and less valuable than you are.  You are morally and factually wrong to treat us as if this was the case.

Also, don’t under estimate us. Not only when it comes to managing our injuries, but when it comes to managing you. Remember something, we’ve been shot, hit by moving vehicles, suffered strokes, been attacked, been devastated by roadside bombs, fallen of buildings, and much much more – and we’re still here. We’re people that deserve all the support that’s out there, and we’re also some of the last folks you want to bully.

And for those of you who, like me, live with a brain injury, please remember this; you are not responsible for your injury, you are responsible for managing it. For those whose injuries are from addiction or suicide attempts, you are are not responsible for your injuries; the villain behind your injury was the disease of addiction or the wrenching life-pain that led you to want to leave this world. In other words, you are human beings, then and now, complete human beings. No one should treat you as if you are less than a complete human being, not even you.

Remember to live, remember to live.

Peace.

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.

 

Willing to fall down

A brain injury is not a static being. One’s relationship with the damage changes overtime. I am no exception. It is also hard at times to determine how much is the injury and how much is rooted in one’s emotional configuration.

There was a time after the injury in which I could work 50 to 60 hours a week. That ended some years back as fatigue is an issue now. Keep in mind that a damaged brain is physically working harder than a non-damaged brain. It’s as if a six-cylinder engine is now running on five cylinders. It still runs, but it has to work harder to run.

I also deal with PTSD. So do many others with brain injury. PTSD (Post Traumatic Stress Disorder) is essentially a disorder that results from a trauma out of the norm. In my case it was being held up and shot in the head. I imagine the combination of living on the streets, being held under gunpoint for several hours before escaping, and being held up at gunpoint only months after the shooting also contributed to the presence of the PTSD.  The damage in my frontal lobe as a result of the bullet does not help. Of late, my isolating has spiked. It is rare I leave the house. I’ll put off shopping or going to the library until the last minute.

I do manage to get to the support groups I facilitate for people with brain injuries and I do manage to get to leadership team meetings for the Kahrmann Advocacy Coalition. I also get to meetings of New York State’s Traumatic Brain Injury Services Coordinating Council. I suppose I am able to break out of seclusion for the aforementioned reasons because lives are at stake, people’s equal rights are at stake, and spending time with fellow survivors of brain injury means a great deal to me.

I can tell you that the day-in day-out struggle with the PTSD-isolation is exhausting and upsetting. Those who know this terrain like I do, and there are many who do, will understand when I say it is not a matter of not wanting to go out. I do. It is a matter of breaking through what I call the fear wall. Today I succeeded in returning a book to the library. It was beautiful weather and my plan was to park and walk about the town. I couldn’t do it. I drove about the town for a short time and managed to stop at the market for a bit of food. There was a moment in the market when I was frozen still with terror. Part of me wanted to drop my shopping basket and run for the exit. Instead I finished my task and hustled back home.

Once home I realize that in that terror moment I was worried that the internal trembling would become so pronounced and debilitating that I would fall down. It then dawned on me that I need to be willing to fall down, push the edge of the terror envelope in other words and if it makes me fall down, so be it.

I will not give up, of that you can be sure. Why do I write a piece like this? In part I write it because there are many who face the same things I do and if they read this they’ll be reminded and reassured they’re not alone. And if there is anything I have learned in life it is this; the challenges we face become more manageable when we realize we are not facing them alone.