Tag Archives: TBI

Gabby Giffords & some thoughts on head wounds

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Several years ago I was standing in an Albany parking lot talking to three other men who, like me, had survived being shot in the head at point blank range. One of us, I don’t remember who, interrupted the flow of our conversation and said, “Can you believe it? We’ve all been shot in the head and we’re still alive.”  A quiet moment followed in which each of us took this reality in. There was, then and now, an  ineffable and unbreakable bond between us. I feel the same bond with Arizona Congresswoman Gabrielle Giffords, who handed in her resignation today , as well as anyone who has experienced this form of mind-splitting, life-shredding violence.

What is rarely if ever talked about is a salient truth unique to head injuries, brain injuries if you will. When your head is wounded, whether by bullet, stroke, fall, accident, drugs, alcohol, and so on, the very place from which you experience life has been invaded, and, without mercy, damaged. I cannot and will not say one type of injury is worse than another. What I can say is there is a form of vulnerability one lives with after suffering what, in today’s parlance, is called an acquired brain injury. And acquired brain injury, or ABI, is any injury to the brain that occurs after one is born. The more commonly used term, TBI, or traumatic brain injury, is a subset of the ABI family in that a TBI is any brain injury resulting from an external event: fall, gunshot, accident.

I tend to think that all of us who have lived through these injuries live with this unique form a vulnerability, sometimes consciously, sometimes subconsciously, sometimes both. The question, or perhaps better put, the challenge we each face is this: are we willing to take part in life again knowing these things happen? My answer and my hope for myself and all others is, yes. Am I successful in this endeavor? Not always.  There are days on end when I cannot get myself out of the house. I do know I do the best I can.

I know this too; the three men I was in the parking lot that day are doing the best they can. Gabby Giffords is doing the best she can. Thousands upon thousands of Americans of every age and every walk of life are battling like hell and doing the best they can. Because we are all human, our best varies from day to day. Such is life. What I will not do, and I hope no one else will do, is give up. If we give up, then whatever life-villain damaged our brain wins. And one of the last things on earth I want to do is give the circumstances of my injury and the injury itself so much control over my life that they cause me to give up.  That is a power they don’t deserve – not ever.

The anxiety, PTSD, & brain injury wars

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One thing the trio of anxiety, PTSD, and brain injuries have in common is this; they are all in constant motion. None are fixed realities. Managing them is a task rife with unwanted undulations.   Managing them can also be exhausting not to mention, at times, heartbreaking.

My struggle with this trio stems from being shot in the head at point blank range in 1984, escaping from being held under gunpoint for several hours, a couple of years of homelessness, and the loss of five loved ones to suicide.

It would be lovely if willpower alone were enough to overpower this trio. It isn’t. Lord knows you need as much willpower as you can get too manage them. Don’t think for a minute I’m saying there is no place for willpower. There is. It’s a great ally. But it is not enough to win the day every day. The notion that we ought to be able to do so is flawed because no human being has total control over every aspect of their life. That is not how we are designed, and it sure as hell is not how life is designed.

From time to time when I have talked about my battle with this trio I’ll encounter some who seem to think I should just pull myself up by my bootstraps and get on with it. There is nothing unique about this experience. Many who face one or all members of this trio get the same response from time to time. Sometimes the response is genuinely well-intended. Sometimes the response comes from a kind of know-it-all arrogance (and ignorance), usually from people, who, upon closer examination, have some formidable challenges of their own in life and are deserving of compassion, though at the time they’re inflicting their judgment on you, compassion can be hard to come by.

Lately this trio has been all over me. Freezing me in place inside my home. Making the thought of leaving my home feel like I am walking into a blaze of gunfire without protection. It has been worse of late in large part, I think, because I know I have to leave the home I’m in and don’t know where I’ll be living next.

What I do know and am grateful for is the simple yet salient fact that I have accepted the presence of this trio as a reality. And because I’ve accepted their presence, I am better equipped to identify ways of managing them. Changes in meds, disappearing into a good book or a good movie, usually a foreign film, conversation with new and old friends, and my two dogs.

And then there is this, when I wake up each morning there is always a sense of joy at having made it to another day. That early morning hour with my first cup of coffee sitting by the fire in the woodstove is a gift that is never lost on me. It is also moment I hold fast too with deep appreciation when, in the worst of it, I am shaking like a leaf and waiting for the horrors to pass.

KAC files grievances with NY State agencies

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The Kahrmann Advocacy Coalition this week filed formal complaints with the New York State Department of Health and the New York State Commission on Quality of Care for People with Disabilities after receiving reports that agencies overseeing the Traumatic Brain Injury Waiver in Long Island and New York City are taking a dangerously long time approving treatment plans for waiver participants. Moreover, it appears these agencies are often non-responsive to calls from waiver participants and are not providing the services they are required to provide while participants are waiting for services.

If these reports are accurate and it certainly appears they are, the behavior of these RRDCs are putting the lives New Yorkers with brain injuries at risk. Both the DOH and the CQC have indicated they will investigate these complaints.

It is important to note that this is not the first time KAC has warned DOH as well as the Traumatic Brain Injury Services Coordinating Council that the lives of waiver participants are being placed at risk.

The RRDC for Long Island is  Self Initiated Living Options, Inc. Suffolk Independent Living Organization (SILO) locate at 3680 Route 112, Suite 4 in Coram, NY 11727. Their phone number is (631) 880-7929. The RRDC for New York City is Visiting Nurse Association Health Care Services d.b.a. VNA of Staten Island located at 400 Lake Avenue in Staten Island, NY 10303. Their phone number is (718) 816-3555.

Messages have been left with both organizations voicing concerns over these troubling reports.

A win for all NY TBI Waiver Participants

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As a result of the relentless pressure brought to bear on the NY State Department of Health by the Kahrmann Advocacy Coalition, several sources across the state this week confirmed that last month the DOH  instituted a form letter that will inform TBI Waiver complainants of the results of their complaints.

The letter will identify the content of the complaint received, the fact the investigation was carried out, whether the complaint was or was not substantiated, and, if substantiated, the steps that were taken as a result. Moreover, if the complaint is about the Regional Resource Development Center – the RRDC is the agency contracted with the DOH to oversee the waiver in regions throughout the state which includes investigating complaints – or the investigation is not within the RRDC’s abilities, the complaint will be forwarded to DOH for investigation. This is a huge win for the advocacy community and for all New Yorkers who live with brain injuries.

KAC members who relentlessly pressured the DOH to institute a policy of informing complainants of the results of their complaints deserve the heartfelt gratitude of all who live with brain injuries and their loved ones. This change would not have come about were it not for their efforts.

It is also very important to make note the following. This confirmed information did not come from Deputy DOH Commissioner Mark Kissinger, nor did it come from anyone in the DOH in Albany. This is important to know for a few reasons.

  • It is very likely the last thing  the DOH in Albany wants to do is give credit to any advocacy group for this policy change.
  • It is very likely the DOH did not publicly announce the change because in doing so they would have to admit their policy of not providing complaint results has been unjust and immoral all along.
  • And just to fire a warning shot across the bow of the good ship DOH, don’t even think about linking this change to the fact the Brain Injury Association of NY State’s contract for answering the complaint line ended as of October 1. BIANYS was never the reason complainants weren’t informed of the results.  The sole responsibility for that inhumane policy rests squarely on the shoulders of the DOH.

The care-less leadership in NYS’s DOH & TBISCC

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I think I’ve reached the age where if someone is going to lie to me, the least they could do is make a little effort and be halfway good at it. Bad enough there are irresponsible, unethical people who have power over the lives of others, worse when those people lie and make the rules up as they go along, endangering lives of others in the process.

A November 5 article in the New York Times about the frightening state of affairs in New York State is chilling.  It also accurately reflects the kind of sloppy sub-standard oversight the New York State Department of Health has brought to the state’s Traumatic Brain Injury (TBI) Waiver

It is a well known fact that the DOH refuses to tell people who file complaints related to the TBI Waiver the results of their complaints. They never have. In fact, several Regional Resource Development Specialists, DOH contract employees who oversee the waiver in various regions throughout the state, have told this writer and others they are instructed not to provide the results.  Until recently when their contract to answer the complaint line ended, even the Brain Injury Association of NY State was never informed of the results.

This kind of mangled dysfunction may explain why Deputy DOH Commissioner Mark Kissinger  reminded me last week of the comedian Richard Pryor. Pryor used to tell the story of how his wife caught him in bed with another woman. “You gonna believe me or your lyin’ eyes?!” Pryor exclaimed. And so it was that when last week I emailed Mr. Kissinger asking – again – when the DOH was going to inform complaints of the results of their complaints, he wrote back saying the DOH does inform complainants of the results! Like I said, if someone is going to lie to me the least they could do is make an effort not to sound, well, like a fool. And so, I sent him the dates of complaints I filed in 2010 and 2011 and am still waiting for the results. I would be remiss if I didn’t tell you that a freedom of information request I filed this summer with the DOH asking for the results of my complaints was denied.

And then of course we have the chair of the Traumatic Brain Injury Services Coordinating Council Michael Kaplen who will never remind anyone of Richard Pryor. Kaplen, whose term on the council expired in 2004, still clings to his seat and chairmanship like his life depended on it. His true colors showed during the September 12 council meeting when he  immediately moved to adjourn the meeting  after the council was publicly informed  by this writer that the quality of lives and the lives themselves of waiver participants were at risk because of the DOH. And, when the DOH and New Yorkers with brain injuries could benefit from a TBISCC if it did what its supposed to do, provide proposals to the DOH to better the lives of New Yorkers with brain injuries, Kaplen cancelled the council meeting scheduled for November 15 and provided no follow-up date.

Neither Kaplen nor the DOH will explain the reasons for the cancellation. It has become clear that most if not all council members were given no explanation of the cancellation either.

Let me be clear, the TBI Waiver and the TBISCC are critically important to the lives of New Yorkers with brain injuries. They just need to be run by people who give a damn and who are inclusive in their approach.

Two things: if people suffer and or lose their homes or  lives because of the actions or inactions of the DOH, those in the DOH should be charged, tried, and, if found guilty, jailed. And if the DOH wants to, say, take one small step in the right direction, it might be interested to know that the New York City number it now gives out for the TBI Waiver complaint line belongs to someone who hasn’t worked for them in quite some time. And that’s no lie.