Monthly Archives: November 2009

Getting Out of Your Own Way

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Henry David Thoreau was right when he wrote, “Go confidently in the direction of your dreams.  Live the life you imagined.”  As cast in truth as his words are, many find themselves shackled by messages  they’ve been given that lead them to believe being who they are can be dangerous. And for some of us, it was exactly that – dangerous. Parents, teachers, family members, clergy, so-called friends, along with romantic partners in life can  destroy one’s sense of value and worth by giving us the message that who we are is hideously flawed and if we’d only just live life the way they wanted us to, everything would be alright. Bullshit.

My message to you is a simple one. Disengage from anyone who does not and will not accept you for who you are. Do it. Lovingly if you can, but do it. Here’s the thing. If you have to give up who you are to be connected to someone in life, the results will be nothing but tragic.

One of the hardest things for many of us to do is give ourselves permission to be who we are and our opponent in this quest is our respective histories. Many have been told they are stupid, ugly, too fat, too thin, to weak, too intense, not intense enough, too dramatic, not dramatic enough, and so on. Another impediment to our giving ourselves permission to be who we are comes from those who have ignored us. Parents who simply ignore their children. What message does that send? The ignored child is being given the terribly inaccurate message that they have no value, else why would they be ignored?  The problem here rests with whoever is doing the ignoring. The problem does not rest with the one who is being ignored. But for a child who does not have the life experience with which they can gauge they way they are being treated, the results are brutal. No child deserves to be ignored.

Too often people in our life ask us to march to the beat of their drummer or some drummer they’ve decided is the be all and end all. This notion  is, in a word, bullshit. If there is purpose to our lives, and I believe there is, it is to be who we really are. What else could it be?  If you are one of the many who believes in God, and believes that God created you, why on earth would God create you if God didn’t want you to be you? I very much doubt God has a problem articulating on the creation front.

So, listen to Thoreau, “Go confidently in the direction of your dreams.  Live the life you imagined.”  It’s your life after all, and you deserve to live it as you.

Update on NY’s TBI Waiver

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The New York State Department of Health is looking for a not-for-profit entity to serve as the state’s neurobehavioral resource project. At least $400,000 in state tax dollars is available for the first year of the upcoming contract. The current neurobehavioral project has been headed for the past 15 years by Timothy J. Feeney who, as this blog as reported, who misrepresented and continues to misrepresent his credentials.

Mr. Feeney’s contract expires December 30 of this year. The concern now for survivors of brain injury like myself, along with health care providers and family members, advocates and others, is what standards will the DOH set this time and will the DOH be sure to vet those who contract with the state to provide support and services to people who live with brain injuries.

While the Feeney era may appear to be over, it ain’t over until it’s over, as the delightful Yogi Berra says.

The following is the standards the NY DOH is seeking for the director of the neurobehavioral project. While there seems to be an increase in standards, it concerns me that the qualifications being sought are absent any real clinical background in brain injury. In other words, one would have hoped a neuropsychologist or neurologist would be sought. You can review the grant funding application request in its entirety at:

http://www.health.state.ny.us/funding/rfa/0908031109/0908031109.pdf

To be qualified to be the Project Director, the individual should possess substantial clinical experience with persons with a TBI and/or a neurobehavioral disorder in community based settings. Project Director must have one of the following credentials:
(A)
A license and current registration to practice medicine in New York, and board eligibility or board certification in psychiatry with three (3) years of experience providing behavioral services; or
(B)
A license and current registration to practice psychology in New York State, and three (3) years of experience in providing behavioral services or traumatic brain injury services; or
(C)
Master of Social Work, Doctorate or Master degree in Psychology, Registered Physical Therapist (licensed by NYS Education Department pursuant to Article 136 of the NYS Education Law), Mental Health Practitioner (licensed by NYS Education Department pursuant to Article 163 of the NYS Education Law), Registered Professional Nurse (licensed by the NYS Education Department pursuant to Article 139 of the NYS Education Law), Certified Special Education Teacher (certified by the NYS

Education Department), Certified Rehabilitation Counselor (certified as a Certified Rehabilitation Counselor by the Commission on Rehabilitation Counselor Certification), Licensed Speech Language Pathologist (licensed by the NYS Education Department pursuant to Article 159 of the NYS Education Law), or Registered Occupational Therapist (licensed by the NYS Education Department pursuant to Article 156 of the NYS Education Law), and a minimum five (5) years of experience providing neurobehavioral services.

If you have suggestions or comments or concerns, please let this blog know, and don’t hesitate to contact:

Charlotte Mason

NYS Department of Health Office of Long Term Care Division of Home and Community-Based Services Bureau of Medicaid Waivers

99 Washington Avenue, Suite 826

Albany, New York 12210

Attn: Brenda Rossman
E-Mail: tbi@health.state.ny.us

The Bottom Dropping Out

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We are walking on the beach when the bottom drops out. It comes from out of nowhere. One minute I am walking along doing just fine,and the next, all my strength is gone. I feel like I’ve been unplugged. I am light headed. Christine immediately notices the change. She later tells me I suddenly went pale, started sweating, looked worried. I was worried. I was scared.

The very steep set of stairs leading off the beach is maybe 100 yards away. It feels like 100 miles away. I know I have to get out of here, get back to the car. I need to sit down. I’ll feel better, I think, if I can just sit down.

Walking slowly towards the foot of the stairs things aren’t getting easier. I want to lie down on the sand and sleep. I want to sleep in the worst way. I don’t lie down on the sand and go to sleep because I am suddenly afraid if I do I’ll never get up.

Christine gathers up our shoes at the foot of the stairs and we begin our ascent. As I start climbing the stairs I decide I will not stop climbing until I reach the top. I don’t care what happens. If I collapse, I collapse. I will not give in. I am not volunteering for whatever it is that is taking a run at me.  Am I making the smartest decision? I didn’t care then and I don’t care now. It was the decision I wanted to make and so I made it.

I know I’ve been sick for a couple of weeks and my sleep has been sporadic and while I had been feeling better, it is clear I tried to do too much too soon. That’s the way it is sometimes. It’s kind of like when your eyes are bigger than your stomach. After not being well for awhile your mind is often ready to take on a level of activity before your body is.

In the car I am feeling safer. We get to a roadside food place. I eat and drink a bottle of juice and feel a little better.

Later I rest. Talk with Christine. Quietly thank God I am still alive. Remind myself (as if I need reminding) that the days are numbered for all of us. And, I remind myself once more that no matter what, I should remember to live. So should we all.

 

On Suicide

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There is nothing easy about the subject of suicide and whenever the subject enters the realm of my awareness, I am internally stilled and quietly shifted into a chilly lonely place.  I’ve lost a mother, brother and birth-father to suicide and so know firsthand the carnage it causes. Reading this week about the suicide of Robert Enke, the goalkeeper for Germany’s National Soccer team brought tears to my eyes. The young man battled with depression and, reaching a point where he believed death was the only way to free himself of the pain he was in, ended his life. He as 32.

I am not against suicide in all instances. I think if one is terminally wants to end their life with the dignity, they have a right to do so. But suicide, the ending of one’s life, is like many things in life. The choice can be made for healthy or unhealthy reasons. I can tell you that in the instances of my brother, mother and birth-father, all three made the choice for unhealthy reasons which makes their choices all the more heartbreaking.

What I can say is this, when one is contemplating ending their life, it is likely they are feeling out of control of all their life and the ending of it is the one thing that do have control over. I think each individual deserves to discover that while they honestly and understandably feel like they are out of control, they are not. And if there is a way for them to discover they do have control, the have a right to know about it. Once the decision to end life is acted on, the light is out. However, when one explores the possibility that they have more say over their life than it seems and discover that this is so, lights go on.

Life is better with the light on because this way you get to live it.

Reasons to Go On

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There are dreams to be had and breath to be drawn, lest you think the sun has set, there are always reasons to go on

Movement shifts the land beneath your feet, the sky shifts as clouds pass by, and a songbird sends notes like jewels into the sweet morning air

There are dreams to be had and breath to be drawn, lest you think the sun has set, there are always reasons to go on

The morning coffee holds hands with the whisper of the day’s paper unfolding as sweet mist rain bathes the county fair

There are dreams to be had and breath to be drawn, lest you think the sun has set, there are always reasons to go on

……….even if you can’t see them you can be sure they’re there…for you too….they’re there