Monthly Archives: January 2012

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.

Remembering to live

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A close friend of mine who died last year used to say, “Remember, the moment you’re in is the only place you have to be.” This man helped me enormously on my journey to sobriety, something this writer could not have done alone. In July of this year I will celebrate 10 years sober and it is not an overstatement to say I protect my sobriety with the same ferocity as I’d protect my child. I am not in the least unique, nor am I anywhere near the first to say, anything you put before your sobriety you’ll lose.

More than anything, I don’t want to lose the chance each day gives me to live my life. Remembering to do so can be the challenge. Life is never short on distractions. These days I can get so caught up in the task and frustration of finding a new home that I forget to enjoy the quiet mystical beauty of the falling snow. I can get so caught up in living on a diet that largely consists of beans and vegetables along with the occasional bowl of oatmeal and fresh baked loaf of pumpkin bread that I forget to enjoy the fact that one of my dogs, Charley, is always sitting nearby with his head cocked in the diligent hope and undying belief that it is just a matter of time before a morsel of food hits the floor.

While it is true that life happens to us whether we like it or not, it is equally true that the wonders of life are there for our experiencing whether we like it or not; it is simply a matter of staying open to them which, in most cases, means staying present in the moment you’re in. Early this morning, for example, I went outside to put some mail in the mailbox. A crow perched in a nearby tree cawed good-morning and I responded with, “Hi, sweetie. Glad you’re here.” I’m glad I didn’t miss that moment.

None of us are absent the wanted and unwanted challenges of life. That’s a fact. But none of us are absent the right to live our lives in the moment we’re in and all the glory that can be found there.

Right now, as I write these words for you, there is jazz playing quietly in the background. Next to me is a mug with fresh-made coffee. Not far from where I sit a fire dances in the woodstove. My reading chair is near the fire and on the table next to the chair the book I’m reading, Thomas Hardy’s “Far from the Madding Crowd,” is waiting for me. Charley is curled up by the fire and McKenzie, my old and loyal German Shepherd, is sleeping at my feet. I’ll be damned if I’ll let the challenges of life, particularly the unwanted ones, rob me of remembering to live the moment I’m in. While there will always be challenges, there will always be a moment to be in; I just have to remember to live it. I hope you do too.

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.

When it comes to equal rights, it is personal

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I can think of no better time than now, Martin Luther King Jr. Day, to say a few words to all, including those who, if they abide by the requirements of their respective roles, are bound to the notion that people with disabilities deserve equal rights meaning, they deserve their freedom. There can be no freedom without equal rights. My disability is a brain injury as a result of being held-up and shot in the head in 1984.

In my state  of New York the struggle for equal rights for people with disabilities (and seniors) often finds itself confronting those who are seeking to save money at the expense of those rights which includes the right to live as independently as possible. In some cases this means having access to the services they deserve to make this possible. The struggle is, at times, with some of those who loudly pronounce their support for those of us with disabilities, but, when the forces that seek to deny us our rights raise their heads, they fall silent.

Over the years I have made friends and lost friends because I hold people, companies, agencies, councils, committees, and governments accountable for their actions. There are some who think that I start out holding these folks accountable publicly. Not true. In many instances, and, in some cases, for significant periods of time, I have held the aforementioned accountable in conversations behind the scenes. But when that fails, the dysfunction and the glaring disloyalty to their professed cause must be brought into the light of day. There is no doubt I have angered some and there is no doubt some have taken my actions personally.

I don’t advocate for equal rights to make people angry and I don’t advocate for equal rights to wound someone personally. Has it ever occurred to anyone that having your equal rights denied might make you angry? Has it ever occurred to anyone that having your equal rights denied is personal? When you lose your equal rights, you lose your freedom. For some of us with disabilities, losing our freedom includes losing our freedom to remain in the community! Our freedom to choose where we live, what we eat, what we wear, when we sleep, when we get up, where we go during the day, what we hear, what we see…   This is no exaggeration. I wish it was, but it isn’t. Just imagine losing your freedom in any or all of the ways just mentioned and then ask yourself if it wouldn’t make you angry. Ask yourself if maybe just maybe you might take the loss of your freedom personally.

There are some groups in New York who truly do practice what they preach. The Center for Disability Rights  headed up by Bruce Darling, a man I genuinely love and respect, comes to mind. On the CDR homepage, Mr. Darling writes, “Some people say we are never satisfied. Others try to portray us as complainers. I feel we just call it as we see it.” Thank God they do.  And what is it they do? They hold everyone accountable and, at times,  they do so publically. After all, sunshine is the best disinfectant.

And then too there is the extraordinary group, ADAPT, whose battle cry is, accurately and not surprisingly, Free Our People!  And, in my state, we have NYSILC, the New York State Independent Living Council, along with some  Independent Living Centers across the state who are indeed remarkable. But we need more groups like this. The fledgling Kahrmann Advocacy Coalition has, in a very short time, taken the role as the largest grassroots advocacy group for people with brain injuries in the state. Why? Because it was a huge void that needed (and deserved) to be filled.

If all that’s been said here and other places about the need for public advocacy for equal rights has not swayed you, then perhaps the words of the man whose day this is might help. Perhaps his words might help those who remain silent when the rights of any people are being denied to change their ways and speak out.

Dr. Martin Luther King Jr. said:

  • “Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.”
  • "A right delayed is a right denied.”
  • “In the End, we will remember not the words of our enemies, but the silence of our friends.”
  • “Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.”
  • “Our lives begin to end the day we become silent about things that matter.”
  • “The hottest place in Hell is reserved for those who remain neutral in times of great moral conflict.”

Let us also remember that the reason this day belongs to Dr. King, and therefore all of us, is because, like CDR, ADAPT, the NAACP and more, he called it the way he saw it, and he did so in a way we all heard, understood and believed.

We shall overcome.

     

Chasing home

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Late last year I wrote an essay for this blog called I Remember Homelessness. In it I said, among other things, hunger is a harsh master.  So is the notion of finding a home. If you’ve ever been homeless, or on the street as well called it during my days of homelessness, the fear it will happen again never leaves you. It certainly ebbs and flows, depending on life’s circumstances, but once it has happened, once you walked hours on end with no place to go, it’s possibility never entirely dissipates.

While I am not homeless, I am again looking for a home. I must move from where I am now no later than May 1 and am able to move as early as April 1. I am on disability, make some money from writing, and have a Section 8 voucher which on the one hand contributes towards the rent and on the other, limits the places one can rent. Because I live alone I have what is called a one-bedroom voucher which means the rent amount Section 8 will recognize is based on the expense of a one-bedroom dwelling. You can rent a two-bedroom if you want, but they lower the amount of rent they’ll approve because the utilities for a two-bedroom are more expensive than they are for a one bedroom. The unpleasant part of the equation is this; if you rent a two bedroom your portion of the rent goes up and the amount they’ll help you with goes down (and the 1% is whining about class warfare?).

And so the hunt is on. I’m looking in a variety of New York Counties as well as Western Massachusetts, parts of New Hampshire, and maybe even Vermont. The New York Counties include Delaware, Otsego, Dutchess, Greene, Rensselaer, Columbia, Washington, Schoharie, and Westchester. A couple of times I thought I’d found a place but, alas, not yet. My hope is for a cottage or cabin, even a mobile home, quiet setting, and dogs allowed. My old German Shepherd and my young Black Lab mix are family; we be in it together.

I’ve been on my own since I was 16. This is not the first time I’ve been chasing home. God willing, it will be the last.