Monthly Archives: August 2011

This August Month

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If history has its say I will die in August.  August has three rather formidable anniversaries for me, the specific days of the month are not important  for this essay: my mother Virginia committed suicide in 1992, I was shot in 1984, and, my father died in 1969.

It may surprise you to learn that all in all August is not a depressing month for me. While the three experiences just mentioned all brought me to my knees, literally and figuratively to be sure, the fact I survived them and am alive and well and sober serves as a reminder to me that we human beings are far more resilient than we think. Yes, this includes you too. Whether you are able to believe this or emotionally experience this as true about yourself will have something to do with the moment you’re in right now. But I’m right, you are a human being with greater reserves of strength and resilience than you may, at the moment or at this time in your life, believe. because one believes they are absent strength does not mean they are, it means that is what they believe.

Now, while August is not a depressing month for me (I actually feel quite victorious on the day of the shooting, it’s twenty-seven years this month), it is an on guard month for me. A month when I am on a heightened state of alert. And this is all okay.

Having said all this, however, I am deeply saddened that I may have to say goodbye to one of my dogs this month and, if not this month, soon. Milo and I have been together since on or about 1999 and we are quite close. He is a brindle beagle-mix and has been my writing companion for years. Whichever room I’m in, that is where he wants to be. I’ve written many words with him curled by my feet. He has never criticized my writing nor, come to think of it,  me. Well, maybe he does get a bit huffy with me when I‘m a bit slow of the mark feeding him. We weren’t together long before I realized his primary goal in life was to eat all the food on planet earth.

I will hold him when he leaves this world. I will not let him be without my arms around him and words of love pouring into his ear. He will not be alone. No one should have to be alone in the end. And while I cannot protect myself and most from that fate, I can protect him. God knows he’d protect me.

While August and I may not be in love, we do have a close relationship. I respect him and I hope, after all these years, he respects me.

Is the Kaplen-Avner Show the problem?

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It is revealing but not surprising that the New York’s Brain Injury Association – not the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) or Department of Health – is announcing what the next TBISCC meeting will be about.  It is no secret that the leadership of all three groups are, figuratively speaking, in bed together. It is also no coincidence that Michael Kaplen and Judith Avner lead the council and both, until recently, led BIANYS. Avner is still the BIANYS executive director.

According to the BIANYS website, “The September meeting will be dedicated to a discussion of the Concussion Management and Awareness Act (S. 3953-B) which passed the legislature at the end of the session. Discussion will focus on recommendations on the implementation of that legislation to the Commissioner of the Department of Health.” The passage of the act is, without question, a positive step forward. For the council to provide recommendations is all well and good and certainly appropriate. How is it, though, that BIANYS knows, before it is a announced

It is also no secret that little if any evidence exists of BIANYS or TBISCC leadership ever taking the DOH to task for some of its rather brutal treatment of brain injury survivors and, not incidentally, its rather brutal treatment those who provide services to brain injury survivors. New York’s Brain Injury Providers Alliance, for example, has, for some time now, been rightfully pleading with the DOH for a statewide uniform billing policy and they are still waiting.

What is not appropriate and what is an act of disloyalty pure and simple to New York’s brain-injured individuals is the fact TBISCC and BIANYS leadership will do anything but hold DOH accountable.

Some examples:

  • The council was asked to look into the blatant injustice of the state’s TBI Waiver complaint line managed jointly by the DOH and BIANYS. Complainants are never told the outcomes of their complaints, a lack of due process by any measure.
  • With only one or two exceptions, the council has tip-toed around the fact the DOH has told TBI Waiver providers they cannot side with complainants at Medicaid Fair Hearings. BIANYS has completely avoided addressing this issue.
  • The TBISCC and BIANYS remain dead silent even though a recent article in the Albany Times Union  and this blog have reported DOH’s effort to use any excuse under the sun to discontinue housing subsidies for brain-brain injured individuals even when doing so would leave them homeless and jeopardize their lives. 

One question that needs to be asked is this. Is the Kaplen-Avner show the problem? A step in the right direction would be for  Kaplen and Avner to step down, then we would find out.

 

For my father

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In all times

And in all lives

There are moments filled

With the sincerest intimacy

You and I

Shared such moments

And I thank you

And love you

For those times

***

Note: I wrote this the day after my father died on August 16, 1969. I wrote it alone in his room. I was 15. My father was and is the greatest gift my life has ever given me.

Keeping it simple

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Many of us, and I am no exception, get so caught up in the perpetual swirl of life’s struggles that we forget to relax, breathe, keep things simple. We forget to live.

Whatever the struggles we each face, either by choice or by unavoidable circumstance, none deserve so much sway over our lives that we lose sight of what is truly wonderful about life, and what wonder is there for us to experience, even with the struggles.

As an advocate, primarily in the arena of brain injury, there is so much dysfunction and bigotry to address I can, and at times have, found myself doing little else, save for reading: a habit that has sustained me through the darkest times, that’s for sure. I live in state with a department of health packed with people who, with some very real exceptions, couldn’t care less about those who live with a brain injury. I live in a state with a brain injury council, called the Traumatic Brain Injury Services Coordinating Council, that has pretty much failed to live up to its stated purpose from day one. I live in a state with a brain injury association that, on the one hand is a remarkable and desperately needed educational presence on brain injury, and, on the other hand, claims to be an advocacy agency when it is not.

In short, the issues with all of the above could consume anyone whose instinct is to promote equal rights.

It is clear to me that being consumed by any one thing, even when honorable, is not healthy, and, in the long run, makes one less effective when it comes to this one thing in the first place.

When you think about it, what is advocacy for equal rights actually about? It’s about the right of every individual to be who they really are in life,  safely, equally.  In life means the ability to live life. To fall in love and walk down the street holding hands with the person you love. It means being able to go out for coffee or a meal or read a book. It means being able to watch movies, birds, people, sunsets, sunrises, thunderstorms, snowfalls, oceans, rivers, streams. It means being able to listen to music, laughter, wind, thunder, conversation, and so on. It means experiencing life, which none of us can do as well as we have a right to do if we are consumed by any one thing.

Keeping it simple so much means staying in the moment you’re in. As a friend of mine recently gone from this life said to me: “Remember, Peter, the moment you’re in is the only place you have to be.”

Early Morning Moment

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It takes them not long to see I am merely reading, or listening, or day dreaming. Soon they are flitting about all around me, sometimes flying past me like thrown darts, the sound of their wings, rapid joyous heartbeats. Their songs (so many I wish I knew them all) dance in the air, a kaleidoscope of jewels. And I feel and experience and believe with all my heart and soul that we are indeed friends. We are all together in this early morning moment that is, for now, one of exquisite peace. I am happy in tears.