Shifting Turning Shifting Again

Rockin’ soft slow in this sweat dripping ride

Her dreams slide in deep deeper measure

The sunset outside the window curtains daylight

As we’re dreaming the skin to skin moving embrace

Shifting turning shifting again

Her feathered hair curve frames her face

A magic dipping neckline driving sculptors

Mad while feathered tongue drifts down

In crevice wonder glistening nipple

Shifting turning shifting again

Some men dream in minutes some

Men dream in hours some men

Dream in minutes and seconds but

I dream sweet tasting lifetimes

Shifting turning shifting again

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A Sister’s Love

The film is testimony to the love and loyalty between two sisters: Sabine and Sandrine Bonnaire. Sandrine is a famous and truly gifted French actress and Sabine is her younger sister, an extraordinary woman in her own right who lives with autism. The film is a 2008 documentary called, “Her Name is Sabine”. It is written, directed and produce by Sandrine.

This brilliantly done piece of work is riveting, wrenching and testimony to the dehumanizing and destructive impact of too many healthcare systems around the world. This loving and unblinking look at how an unprepared and at times uncaring system may well have done more to damage Sabine’s ability to manage life than the autism. Sabine’s experience is anything but the exception to the rule. I have seen the healthcare system in my own country destroy lives and demolish hope. I watched the film online on Netflix online at times could not see the screen through the tears.

I have been blessed with the experience of seeing some truly special relationships between sisters. My ex-wife Paula and her sister Tracey had and have a bond so loving and close no power on earth can sever it. I knew four sisters: Diana, Cindy, Nora and Sylvia that were and are dazzlingly close. Like Paula and Tracy, watching them in a room together was so much fun that going to a movie, Broadway show or concert was boring by comparison. There is no doubt the bond between Sabine and Sandrine is just as deep and just as glorious.

While I will not give much of the film away because I am hoping you will make a point of seeing it, there are moments that make you cry and moments that make you laugh. A wonderful example of the latter was when Sabine is going swimming at an indoor pool. When she is checking in she says to the man at the counter,”Go fuck yourself.” When the woman with her points out this might not exactly be the most effective approach, Sabine looks at the man and says, “Bonjours monsieur. Don’t go fuck yourself.”

Sandrine and Sabine make another powerful point in this film. People with disabilities are people too. They deserve equality because they are equal. Not because we ought to be nice enough to let them think they are. Neither do they deserve to be medicated into oblivion, enslaved in houses and institutions. They deserve their freedom. It ought to be criminal act when giving people their freedom is deemed to be too tall an order.

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For two mother’s who know more than most: Patty Black and Paula Gudell

Don’t Forget to Say I Love You

Many hearts long to hear the words I love you and many hearts struggle to say themWhen these three life-giving words remain unheard and unspoken, the suffering and destruction cannot be measured.

Those raised not hearing these words often struggle to say them. Some say actions speak louder than words. More often than not this is true, but not in this case. Now when it comes to saying I love you.  The notion that people should know we love them misguided and it is not the point. There is something deep in our child hearts that hungers and deserves to hear these words.

My last conversation with my mother Virginia took place on the phone three days before she committed suicide. She had said she was going to commit suicide. The last words I said to my mother were, I love you, Mommy. The last words she said to her son were, Thank you, Peter. When I hung up the phone I crumpled to my hands and knees and sobbed. I sobbed because I didn’t know if I was going to be able to save her life (I couldn’t!) and she couldn’t say, I love you.

I inflict zero judgment on those who struggle to say these words. More than likely the people who were and are deeply precious and important in their lives never said I love you to them. Somehow, some way, this pattern needs to be destroyed. And for those of you who have not heard the words I love you from people in your lives, please don’t give up – and don’t forget to say, I love you.

Summiting the Sacred Days of August

The three sacred days of August for me are the 12th, 16th and 24th.

The 12th marks 17 years since my mother, Virginia, ended her life. The 24th marks 25 years since I was held-up and shot in the head. The 16th marks the 40th anniversary of the biggest hit I’ve ever taken in life, the death of my father at age 55. I was 15.

Now, if you think this essay is steeped in sadness and heartbreak, then you don’t know me. It’s not. The sacred days of August are days I plan honor. They are days etched in pristine unblemished memories. They are days I intend to celebrate in an uplifting way.

On the 12th I will celebrate and honor my mother’s  life; on the 24th I will celebrate  the blessing of keeping my life; on the 16th, I will celebrate the greatest gift life has ever given me: my father.  While my father left the world far too soon, his presence in my life has kept me going during some of the darkest times and allowed me to share some of the best of times with him.

And how, you may be wondering, will I celebrate these days? I plan to climb a Catskill Mountain on each of these days and, as my custom has it, leave a twig on the summit. A twig you ask? Yes, a twig.

Some years back I was visiting my father’s grave in New Jersey. It was more than 20 years after his death. It dawned on me that by this time his body had begun to decompose and so had become part of the soil.Realizing this it dawned on me that his body was now part of the soil that was feeding the oak tree the grew right next to his grave which meant that my father was present in this beautiful tree!  Trees shed small branches from time to time. And so I gathered some up to take with me. By having these twigs with me, my heart knows I have part of my father with me.

And so, when I reach the summit of the mountain on these three days, I will leave one of the twigs there.  My father deserves to reach the summit. After all, he is now, always and forever the summit of my life.

Charles Dickens & Disability Rights

I have come to believe disability is in the eyes of the beholder. In fact, the inability or unwillingness to grant someone their humanity because of a challenge they face on the physical or cognitive front is the biggest disability of all; it is the very disability that denies people their freedom.

For some time now I have wondered how best to reveal the dehumanizing treatment people with so-called disabilities often endure. I say so-called because those who do not see the humanity of others are the most disabled of us all.

I have both seen and heard so many examples of dehumanizing and humiliating treatment it’s hard to know where to begin. I know of one instance where a director of a brain injury program in my state told the wife of a brain injury survivor, who was sitting right there listening to this, that a formal funeral needed to be conducted for him because he no longer existed and that his wife needed to allow this program director and his team to recreate him. The director added that it would be a good idea for her husband to attend.

I know of another program where a workshop facilitator with the compassion level of Mussolini locks the doors to the room when a workshop begins and berates those who may need to use the bathroom for not having gone before the workshop. Moreover, he denies people admittance to the workshop if they are late. I have personally heard this “Mussolini” in action, bellowing down a public hallway to survivors, “Okay now, let’s get moving, workshop time. Lets get moving, kids!” Keep in mind he was talking to about four or five adults, one of whom was a squad leader during the Vietnam War. When “Mussolini’s” behavior was brought to the attention of the little dandy of a company owner, he said something to the effect of, Oh my, that just can’t be possible. I’ll look into it, which means, of course, that he won’t do anything of the sort.

So, my point is, it is easy to give you examples that will, if there is a heart beating in your breast, break your heart and turn your stomach.

But it was a sentence from an extraordinary two volume biography of Charles Dickens by Edgar Johnson that opened my eyes to what may be the best way of telling this story. Dickens himself lived a brutally rough childhood. His family was sent to debtors prison and Dickens, his hopes of becoming an educated gentlemen being, in his youthful mind, forever lost, found himself working in a blacking factory. All his life Dickens wrote with a keen awareness of the brutal circumstances faced by the poor and the punitive way they were treated by society. It is still true in too many instances in my country and it is certainly true in the way people with so-called disabilities are treated.

But Dickens understood that revealing harsh realities by merely telling of the horror was not the most effective approach. Instead, Johnson writes, “it was Dickens’s aim not to turn the stomach but move the heart.” And so we have Oliver Twist and David Copperfield and many others who move our hearts.

And so I have determined, that here in this blog, and in a book that is beginning to make its way onto the page, I will try to move the heart. Yes, like Dickens, I will reveal the horror of things as I have done a bit in this essay. But, when the horror of a behavior is linked to a human being you care about, the “Mussolini’s” of the world are more likely to be overthrown, which is as it should be.