Monthly Archives: December 2009

2010: Rethinking It All & Thanking My Readers

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By and large 2009 has been a rewarding year for me.  It’s had it’s blows but all years do, nothing new there. The readership of this blog has more than doubled from last year. At times more than 2,000 viewed these pages in a given month. While a large majority of the readers are from my country, there have been readers from around the world: Canada, Israel, Saudi Arabia, Great Britain, France, Slovenia, India, Korea, Ireland, Columbia, Romania, Brazil, Australia, Morocco, Norway, Paraguay, South Africa, Thailand, Taiwan, Luxemburg, Croatia, Spain and so on.

I cannot tell you how grateful I am to those of you who visit here, whether you are stopping buy one time or, like more than I ever imagined, you stop by regularly. You can be sure this blog will keep going. In fact, this is the 228th piece I’ve written for it this year alone.

This year has had some fine realities:

  • I am still sober and without my sobriety, none of what is wonderful in life would be available to me.
  • A workshop I began in early 2008 for survivors of brain injuries and others continues to flourish and will celebrate its second anniversary in early 2010.
  • My friendship with Michael continues to show us both we are brothers, and my love for my nephews: Vincent and Philip, and now Jay, is as powerful as can be. My love for Frieda, Michael’s wife of the heart, runs so deep she is, without question, family to me too.
  • I saw Tischa Toon,  my childhood friend, who I love very much, for the first time in years, met her husband, David, a beautiful human being, and saw pictures of their sons.
  • I have a group of wonderful male and female friends and am forever grateful.
  • The survivors of brain injury, their loved ones, and all others who come to my workshops and those I have met throughout this state are people I genuinely care about and, in many cases, genuinely love. Whatever good I may bring to their lives pales in comparison to the good they bring to mine.
  • My advocacy has done some good this year, I hope, and for those who know that streak in me, you can be sure it is as alive and well and as tenacious as ever.
  • I met Christine Mansfield in Cape Cod and fell completely and utterly in love with her. And just in case that wasn’t enough, I met her daughters, Emily and Anna, extraordinary young women in their own right, and love them both.
  • I am on the New York State Council on Independent Living and I can tell you that is one spectacular group of people.
  • Although on disability, life is wealthier than ever.

This year, like any year, has had its not so fine realities as well:

  • My friend Jimmy died too soon at age 57. There is a little less light in the world with him gone.
  • I met some who offered lip-service friendships with love and loyalty firmly tied to the foundation of hot-air.
  • While there are some positive signs and things may be looking up in my state for people like me who live with brain injuries, we are not out of the woods, and I and those connected with me around the state are paying close attention.

On the horizon:

  • There are some new steps on the advocacy to be taken this year, one is already underway, the formation of a statewide coalition of brain injury survivors so that we too will have a unified voice.
  • I will devote more of this year to writing than ever before and may cut back in other areas to do this.
  • I am quietly adding things to my bucket list and will be acting on them.
  • I will begin writing a piece this year revolving around my experience of my state’s relationship with those of us who live with brain injuries
  • And more….

In the meantime, please take care of yourselves and each other. Don’t forget to say I love you to those you love. They deserve to hear it and you deserve to say it.

And, remember to live. Thank you again for reading this blog.

Warmth and respect to you all,

Peter

Meeting Sinclair Lewis

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In 1930, Harry Sinclair Lewis, better known as Sinclair Lewis, became the first American writer to receive the Nobel Prize in Literature. I finished reading Main Street (1920) yesterday and it is no wonder he won the Nobel. Not only can the man write, but his eye for social injustice was extraordinary and far ahead of its time.

Main Street is a story that in many ways speaks to the need for equality for women.

I began reading Arrowsmith (1925) this morning. Arrowsmith, the story of Martin Arrowsmith, who becomes a doctor for all the right reasons, is a book that speaks to the moral corruption of the healthcare system (then and now, by the way). The priority of the patient’s welfare is firmly placed in the rear view mirrors of financial greed and regulations too often created and kept in place by individuals who walk around with inflated views of their own importance, ‘cause by golly we are the enforcers of these regulations and so, by golly, y’all ought to sit up and take notice of us, and remember to act intimidated when we walk by or behave dictatorially towards you in a meeting or on a page.

I watched how one such official left the room recently at the end of a meeting. I had the distinct impression her day would have reached perfection had all in attendance bowed as she passed by.

Hypocrisy abounds, then and now. Lewis’s book, Elmer Gantry (1927) uses a fictional character, Gantry, to expose the wounding hypocrisy of those preachers who represent anything but Christianity. And, of course, there is his novel, It Can’t Happen Here (1935), about an American president who does his level best to be a dictator (Bush and Cheney anyone?).

Meeting Sinclair Lewis for me is meeting a friend. I plan on gobbling up a biography or two and, while my writing is not in the league of his writing, my will (and willpower) to expose the hypocrisy and harm being done in my society is.

Sanctuary

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All of us deserve a sanctuary in life, more than one if we’re lucky.

I find sanctuary on the page, a place to come to, go to, a place that as long as I am breathing is always there. It is a place where I can read the words of others and a place where words from my pen can spill out and try to find their way. My words may not dazzle or be of any particular value to anyone but me, but they are mine, and, over the years, we have become good friends.

Words are living things, individuals all. They have expression and scent and color and tone; they come in all different shapes and sizes.  They are, for me, great company. I  don’t know how I could go through life or if I’d even want to go through life without books.

I could no more survive the absence of books than I could the absence of air.

The Frontal Lobe: Riding the Waves

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Emotion is the fuel.

Many of us who live with frontal lobe damage have to wait for a wave of emotion in order to get things done. Absent emotion, many tasks lapse into stillness. Years ago I worked with a young man  whose physical functioning made it impossible for him to manually power a wheelchair so a power chair was ordered. He’d sustained his brain injury from a motorcycle accident. The day his power chair arrived he was overjoyed.

Once he was situated in the chair I said, “Okay bro, rock on. Kick your injury’s ass.” He drove that chair out into the hall, made a right and drove down the hall a good 20 yards or so, navigating the chair beautifully. He then came to a stop. I caught up with him and said, “You can do it, don’t let the injury control you, go for it.” And off he went, but this time only half the distance he covered the first time. After a time, no matter what I said, he didn’t drive the chair.

Confused, I talked to a neuropsychologist.  She explained what was happening. “The emotion provides the fuel for the action.  It temporarily overrides the frontal lobe damage. As soon as the emotion fades, the injury takes over.”

And so it is that many of us who live with frontal lobe damage wait for those waves of emotion to get certain things done. I do this with my writing. There are all kinds of things I want to write, I’m working on three books for God sakes. But unless I can locate an emotional wave to ride, I can’t get myself to the writing table. It is the same with this blog,  I have ideas for essays, but unless I can locate an emotional wave, I can’t get them written.

Those who work with brain injury survivors need to understand this, if they want to be effective in their work. Too often I have heard those with the symptoms of frontal lobe damage referenced here referred to as lazy, which is brutally and abusively wrong. Laziness has nothing to do with it. The part of our brain that serves as the ignition to begin a task doesn’t work. While the engine is there, the ignition is not. Emotion is needed to hotwire the engine so we can begin the task, so we can ride the waves.

Caring for Appearances and $ Only

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I have lived with a brain injury for more than 25 years now as a result of being held up and shot in the head in 1984. Since then I have met people who care and don’t about those of us who live with brain injuries. I’ve also met those successfully manipulate many, myself included, into believing they do care when in fact they don’t.

I can tell you from firsthand experience that those who work for the Brain Injury Association of New York State care with all their hearts and souls. They have helped me through some tough times over the years and I can honestly say I love the people who work there. I am proud to be a member and would tell anyone who lives in New York they are making the world a better place by becoming a member.

I know people in the New York State Department of health who care with all their might. I recently met with two DOH official who care and then some, so be careful not to write off government agencies and or employees as being absent compassion and caring. Moreoever, I know healthcare providers in my state and other states care with all their might.

I also know healthcare providers who don’t care. Who see us as a means of making money and or as a means to inflating their dysfunctional egos by seeking to and, in too many cases, succeeding in controlling our every move.

In my years of working with people with brain injuries I have worked with two company owners who both put on quite a show of caring. One, who has since passed away, I’ve come to realize really did care. Sadly, very sadly in fact, his personal demons got in the way of his acting on his compassion in a healthy way. The second owner continues to put on quite a show of caring but in fact continues to operate a program in which participants rights are too often not respected.

I was forced out of the latter owner’s place because I would not be quiet when I saw people with brain injuries being denied their rights. Do I hate this owner or the one referenced earlier? No. I hate the latter’s behavior and feel sorry for the arrogance that blinds him to the fact life happens to him too whether he likes it or not – just like the rest of us. Were he wounded in life, I’d help him.

Anyway, one day at a time.

I’ll continue to expose those who misstep on the human rights front and support those who don’t, and, thankfully, there are many people in the latter group.